Tag Archives: Spinal CSF Leak

Arachnoiditis, Spinal CSF Leak

ARACHNOIDITIS AND A SPINAL CSF LEAK: FINDING HOPE ON THE JOURNEY

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“Hope is being able to see that there is light despite all of the darkness.”

Desmond Tutu

Today I want to write about HOPE, because hope is one of the strongest forces that can guide us through immensely dark seasons. Love is always the power that truly drives all I do. But hope brings energy to keep on going even when its presence is only the flicker of a flame in the darkest of nights.

”It’s always something, to know you’ve done the most you could. But, don’t leave off hoping, or it’s of no use doing anything. Hope, hope to the last.”

Charles Dickens

Today I am writing to remind you & myself that hope always lives & always remains even when everything appears hopeless. At those times we can often only see unending disaster & pain. Which can feel completely overwhelming to endure. But when we find hope we discover little rays of light that begin to glimmer & shine in the midst of the darkness.

So today I hope you will join with me and choose to HOPE again. In whatever area of life feels hopeless to you at the moment – I pray that you will find the energy to...

Hope, hope to the last.

Six Years of struggle

It’s six years ago this week that I fell from a small step ladder whilst painting & my life took what seemed like a major detour into a long term neurological nightmare. In early 2015 I was diagnosed with a concussion, then post-concussion syndrome, then a spinal CSF leak/ low pressure headaches. However, it wasn’t until the summer of 2020 that I was also diagnosed with arachnoiditis during one of my worst flares/ relapses I have ever had – as I wrote about in ‘Butterflies in the Dirt & A New Diagnosis.‘

This is my ongoing story since that time. My real life story that reminds us that sometimes hope surprises us when we chose to stay the course. Sometimes it turns things around in ways we never imagined or expected. If we will just hold on hope can bring better days again.

Summary of My Ongoing Progress

In general, it’s been mainly good news regarding ongoing progress in my recovery since the new (but old) diagnosis of chronic arachnoiditis. There have been some great results over time from my new ongoing treatment protocol to reduce spinal canal nerve/ arachnoid inflammation & help to ease the pain of the damage already done. This includes various medications and a personal physio plan of continuing to walk a few miles a day over 2-4 separate walks and gently stretching my spine regularly.

Successful treatment has meant that I am now managing to be upright and do things for stretches of on average 10-12 hours at a time before I need to lie down to rest. I can then get up and do even more after 1-2 hours rest.

Which is massive progress because during the year following April 2019 (my last bad relapse/ flare) and my hospital admission after actuely relapsing in July 2020 – I could only manage a maximum of 4 hours upright in one go – normally only 2-3 hours max. I then needed at least 2 hours lying down flat before getting up for maybe 2 hours again, and that was how my whole day went! So all the very high levels pain and debilitating head pressure issues are much improved since I had the IV steroids (methlyprednisolone) in hospital and then continued under an arachnoiditis treatment protocol. My walking is also much stronger and generally good and my mental clarity much improved so I can do a lot more in the day at home & for our church as well as maintain a helpful walking routine. 

Combination of Medications that Help

I continue to take 5mg prednisolone (steroid) every other day and 75mg diclofenac (anti-inflammatory that crosses the blood-brain barrier into the spinal canal) the day in between. I also take 4.5ml a day of LDN (Low Dose Naltrexone) as recommended by a US specialist & other arachnoiditis suffers. (This is not available on the NHS for arachnoiditis but prescribed & purchased privately from a registered LDN trust clinic. Although my GP & Neurologist have been informed I am taking it). I also take Omeprozole 20mg to protect my stomach and some other supplements including Pregnenalone to help nerve regeneration, Turmeric capsules for inflammation, Omega 3, calcium to protect my bones, vitamin B complex, magnesium & vitamin D. 

Intracranial Pressure Headache Improvement

Interestingly, what we previously assumed were classic low pressure/ spinal CSF leak positional symptoms have greatly improved too with the treatment. Which suggests the arachnoiditis inflammation was probably more of a problem on that level than we all previously realised. Which is perhaps good news for other patients that might improve on medication and with more walking and gentle stretching too. IF they could have an arachnoiditis/ spinal canal inflammation element to their ongoing symptoms.

Much Less Debilitated

The main positive thing that has changed since the new diagnosis and treatment is that I am currently much less debilitated and do not need to lie down much at all. I can also manage a lot of the pain & symptoms better – by keeping moving, regular long walks, lying down when the pain and head pressure gets too much, being quiet for a bit… and in the meantime I can do & achieve a lot more as I said above, especially as my mental clarity is much better than it was.

Summary of Recent Improvements

So the never-ending battle continues but 2020 brought new gains that I never imagined could come without more invasive procedures. That experience this year has been something of a miracle in our lives. My husband feels that I am currently the best I have been in the whole nearly 6 years… and I would probably agree with him in many ways. Although there are elements of the lower spinal pain and stiffness that are perhaps worse than other times on my journey.

The Freedom Found in a New Perspective

I think understanding the new diagnosis helps a lot too with management and mentally/ psychologically dealing with it all. It really has been very liberating to understand some more of my strange symptoms & behaviour over the past six years better in hindsight. This is why seeking out more answers can be so helpful to patients like me. Especially those with rare conditions – because it helps you to understand yourself better & gives more explanations for why you sometimes act and respond in the ways that you do. Which is so helpful for your holistic health.

I really do believe in cases of rare illnesses that there needs to be more doctor & patient partnership in understanding new diagnosis. Doctors often do not have the time to fully research and understand more unusual conditions. But if patients and doctors can choose to more humbly learn together then that can help everyone. This is especially true in our newer age of the internet and online support groups. Patients often have the time to research, learn & explore things doctors just don’t have the time for when they meet very few patients with those conditions. This subsequently means that listening doctors can then help a patient understand it all better too, because patients often lack the wider knowledge of medical complexities that doctors are much better placed to help them understand.

In my own story I am still immensely grateful for every doctor who has had the humility to patiently listen carefully and to think outside of ‘normal boxes’ to help very unique patients like me hopefully discover more answers to unique questions about their medical conditions. Those doctors are very precious to us, especially when they help us over the long term so get to know you a bit more personally too.

Radiological Evidence of Arachnoiditis

We have at least made some progress on this level since my last blog article too. My scans have been looked at by a few different doctors now including neuroradiologists, neurologists, a neurosurgeon & an arachnoiditis specialist. The conclusions coming from all avenues is that there are various ‘suggestive features’ of arachnoiditis as well as some possible mildly Adhesive Arachnoiditis (AA) elements on my MRIs. This includes my lumbar spinal nerves being situated more towards the side and back of my spinal canal (first seen in retrospect on my first March 2015 MRIs which would support my theory that a biological predisposition as well as the fall and leak were the trigger – because those scans were done before I had had any spinal procedures). As well as some possible areas of mild clumping & nerve adhesions forming & some inflammation of the cauda equina nerve roots.

This is all actually all very in line with a diagnosis of chronic arachnoiditis. It is usually a clinical diagnosis based mainly on symptoms, but over time people will often display suggestive features of spinal nerve/ nerve root inflammation, swelling and positional shifting, which may also cause spinal cysts forming (incl. tarlov, arachnoid or similar cysts – as I have). Patients may also begin to show some suggestive, possible or probable mild nerve root clumping and adhesions evident on their MRIs etc.

Clinical Rather than Radiological Diagnosis

It has been reported to me that I have enough suggestive features of all of these elements to help support the clinical diagnosis of arachnoiditis. Although not enough to support a radiological diagnosis of adhesive arachnoiditis or cauda equina inflammatory disorder.

These findings are also in line with my own experiences of treatment. I had previously read that the steroid & anti-inflammatory meds will only really work on those in earlier stages of illness progression. So my radical response to both the IV steroids given in hospital in July/ August 2020 (500mg IV methlypredisolone a day over 5 days), the subsequent steroid taper and taking anti-inflammatories, in addition to lots of walking & some gentle stretching would support the theory that the arachnoiditis is present and potentially dangerous to me, but it has thankfully not yet advanced to a more severe permanent type of adhesive arachnoiditis.

This supports my theory that we may well have thankfully stopped a more ‘adhesive episode’ taking hold this summer. I really was extremely unwell and in unimaginable levels of pain in my lumbar & sacral spine and legs. Which without treatment could have well done more permanent damage to my spinal nerves – had we not halted its progression through aggressive treatment.

Arachnoiditis and especially AA can progress very quickly when it severely flares. This is why it’s of paramount importance that people are diagnosed & treated via a clinical diagnosis before it is so serious that it is more evident on MRIs.

Treatment will always work best BEFORE the damage has become permanent & radical enough to clearly show on scans. Specialists also tell us that scan evidence does not always correspond with symptom severity anyway. As with a lot of other conditions like spinal CSF leaks.

So the earlier it is treated the better. Ongoing treatment can also help to halt progression through flares. Which is of great value to me and other sufferers of this awful misunderstood condition. Knowing how to treat it can potentially stop devastating, irreversible damage to people’s spines and whole nervous systems.

ONGOING SYMPTOMS

Despite all the improvements – for which I am incredibly thankful – the reality is also that I believe I still have permanent damage to my spine from the arachnoiditis/ leak – because chronic pain is a normal significant daily part of my life. It is just much more contained than it used to be. This again would align with what is being seen on my MRIs.

CHRONIC NEURO PAIN IN MY SPINE & HEAD

It often feels like a ‘carpet burn’ sensation – like when the top layer of skin has been gashed off – but deep in my lumbar/ sacral spine and upper neck in particular. Or definite nerve pain and pressure flares in my spine & head. Sometimes that builds to more pin’s sticking into me/ stabbing pain. It also means my spine is very stiff which also leads to a lot of leg stiffness & leg pain too. Although lots of walking helps this. Also various movements such as bending, lifting, twisting, straining make all this worse.

PINS & NEEDLES

I also get regular intermittent pins and needles/ buzzing in & all over my legs and feet & sometimes in my hands and other places. I understand what people mean by saying it feels like ‘bugs crawling on you or under your skin’ (paraesthesia) but to me it’s distinctly pins & needles – but it’s like a buzzing that pulsates and moves about on the inside of my legs and all over the surface of my skin. Thankfully it has improved a lot on how it was during my last ‘flare’. These days it’s more annoying than debilitating and thankfully my feet no longer ‘burn’ like they did in the summer.

I HAVE TO KEEP MOVING: ‘RESTLESSNESS’

A key ongoing symptom feature for me (that I have heard is very typical of arachnoiditis) is that remaining sitting and standing in one position for too long exacerbates my all my symptoms, including spinal & head pain, leg stiffness, pins & needles and the feeling of pressure in the back of my head, whole head and upper neck which leads to more fogginess and sometimes even very bad nausea or hot flushes. I have often recently wondered if this is partly a CSF flow issue – as once I start moving around again or walking – it improves. The sensation is that my intracranial pressure builds in my upper neck & whole head – but it improves through gentle movement. Even lying down for a while can cause this to happen. The minute I get up my legs are all stiff and weak and my ears pop from the pressure changes.

What this means is that I can begin to feel very agitated and distracted if I have to stay in one position for a long time. This could be read by others to be an anxiety issue or simply a deep restlessness. But I now know it’s mainly simply a typical symptom of arachnoiditis, due to build up of pain and discomfort to high levels and the body’s natural reactions to that pain and discomfort in my spine, legs & head. As the video explains well.

CSF FLOW & PRESSURE ISSUES

This would tie in with various arachnoiditis specialist’s theories about CSF flow issues and high intracranial pressure problems related to arachnoiditis. On that level I have wondered if it’s possible that the small leak that has been identified in my ventral cervical (in my neck) spine by my NHS Intracranial Pressure MDT could possibly help regulate my pressure rather than distinctly making things worse and causing typical low pressure symptoms. Which I guess could tie into my cranial scans never actually showing low pressure/ SIH.

It may also explain some of my confusing symptoms that at times over the past 6 years have completely baffled neurologists as to whether it was low pressure, high pressure or another headache type or combination. I do often wake up with a headache or at least a ‘pressure filled head’- in the night or early in the morning and I especially struggle with very weak & stiff legs and a ‘full head’ if I have to get up in the night or early morning for the loo.

Although the CSF flow and pressure theories are mainly based on my own observations of my symptoms – I don’t really know the truth of it all of course. I have come to believe it’s all FAR more complex than my doctors & I perhaps previously realised regarding CSF / ICP / arachnoiditis links. Which again would make much more sense of my own medical journey over the past six years. Arachnoiditis is known to both sometimes increase intracranial pressure, but is also known to cause you to leak or seep spinal fluid too. So that again explains more about why my intracranial pressure dynamics are often all over the place & may well continue to be pretty messed up long term. Which would also tie into my general hypersensitivity to any pressure changes. Although again all these things have currently improved to less debilitating levels since treating the arachnoiditis which shows how interlinked it all is with the inflammation as well.

STRUGGLES WITH SITTING DOWN

Thankfully I can sit for much longer than I could – but only either with a very straight spine or leaning slightly forward. Although it is never a comfortable position for me and will make my head and spine pain & pins & needles worse especially after a 30mins to one hour or so. I can also feel very sleepy and nauseous after a while sitting which can makes me yawn obsessively (I again think it’s an ICP increase thing). So I again often have regular ‘getting up breaks’ when sitting alot. I will also be extremely stiff when I get up and have to get my legs moving quickly to get them working properly again.

Travelling sitting in a car is particularly bad for me too. If I travel in the car or drive I sit in a very strange position with the seat really far forward and very straight or slightly leaning forward. I have also invested in a ‘wedge cushion’ to use if a passenger – to help align my spine better in the ‘bucket’ type seats, which seems to help. Bucket seats are known to be very bad for arachnoiditis/ AA sufferers.

ONGOING PHONOPHOBIA & PHOTOPHOBIA

My head is still very sensitive bright and flashing lights, fast moving images & to the layering of sounds. I still struggle with lots of noise at the same time. Like music with a beat, or music in the background with talking, or a combination of other general noises. The music I listen to these days tends to be quiet & acoustic and I usually listen with headphones in my ears to block out some of the other sounds. But all this is much better than it has been for a long time and this Christmas I have been able to tolerate flashing lights much better than in previous years.

TALKING WHILST WALKING

Talking & walking is much better for me now which has been helpful when it’s one of the only ways to see people during the pandemic restrictions. But sometimes it’s still a bit of challenge especially if my head is already a bit flared. One of my worst movements whilst walking is attempting to turn my head to look at things or to talk to someone. That will immediately fill my head with pressure, make it cloudy and cause a lot of pain and pressure in my upper neck. The same thing happens moving my neck to look up or down. So my key is to walk with my head facing forward and my spine very straight.

SINGING

I love to sing, especially with my husband, but singing has often been a key test of how bad my symptoms are since my accident. At their worst I cannot sing (or hardly speak) at all. Even during the first half of 2020 (pre-arachnoiditis diagnosis) my husband and I would often sing for our online church since the pandemic closed church buildings. But I would have to practice lying down then would only get up to record or live stream. But since my new treatment plan I can also sing more. A good example being our recording of Oh Holy Night for our Online Carol Service. I have not been able to properly sing this carol for the past five years especially because of how high it goes at the end. Normally singing that high would cause my head to full with pressure, make me feel drunk & cause me to need to lie down. But to our joy this year I managed to record this at home & this was actually done after a number of practices & a couple of takes – so that has been some encouraging progress.

GOING TO THE LOO

Going to the loo still a problem for my head & bladder. It still feels like either my pressure is increasing or I am quickly losing spinal fluid as I wee – as my head almost immediately feels very strange, full of pressure & my ears will often pop more showing a quick clear pressure change (like happens on a flight). It is also still often uncomfortable on my urinary tract which will still feel a bit irritated for a while before and after I have been. But it’s all much better than it has been in a while & especially in the summer. Previously I could often only go for a wee directly before lying down. Emptying my bowels also makes my head worse especially if there is any straining at all – which I avoid at all costs. Straining is not at all good for leaks or arachnoiditis.

MOVING FORWARD INTO A DIFFERENT SEASON

So it’s a mixed picture of massive gains made in the second half of this year, combined with a reality of continuing to manage many ongoing symptoms.

However, for the first time in a long time I have made much more progress & found many ways to stay busy & occupied within all my limitations. This has included helping the shift to more online church through video creating, editing and social media & website development. These are all things I can do, as and when I can, standing, sitting or lying down, either on my smart phone or for shorter bursts on the laptop. I also continue to help provide pastoral support – alongside my husband – for people in our church & connected to us. Although even a lot of this has had to shift online or over the phone this past pandemic year.

“The real work, the hardest work, is to pick up the pieces and decide how to put them back together again. The new thing that emerges may not work the way it used to, but it can bend and stretch and change us in ways we come to treasure even more.”

Suffer Strong – Katherine & Jay Wolf

That quote is precious to me because it describes my journey well. The past six years have been a marathon journey of learning to accept, adapt, stretch, bend & change according to my current abilities & limitations. My life journey since my accident has in no way been linear. Sometimes it’s been as changeable as shifting sands. Just when you get used to being able to do even more – you again simply crash, burn & relapse.


In those times of disappointment, in those moments I wasn’t sure I had the energy to start another recovery journey again, I found that I had to find ways to acknowledge the grief & pain but then allow myself to bend, change & be moulded anew. In those places I had to let go of finite disappointments & focus on…

A bigger Picture. A bigger Person. A bigger Presence.

… to carry me through.

Until, yet again I have found myself in the more peaceful place of slightly calmer waters. Having let go of who I once was and embracing the life I have been given now. Whilst choosing to allow it to be used to be a blessing & make a difference in others lives.

So that is the infinite hope that I cling fast to. A hope that is not based on the life I imagined, but is based on something far more significant. The the life I was given to live. So I must embrace all that it is – and attempt to use it for good. To make the difference in our world that only I can make. Reaching the people that I was uniquely called to love. And trying to offer hope to others overwhelmed by hopelessness.

Part of that process is continuing the task of simply telling my complicated never ending story – in the hope that it may become a ray of hope in someone else’s darkness. So today I want to tell you again to never give up. Instead choose to…

“Hope, hope to the last.”

Remembering that good can come again in our lives… IF we will only keep holding on and enduring for another day, another difficult season. However impossible that sometimes may feel.

“We must accept finite disappointment, but never lose infinite hope.”

– Martin Luther King, Jr
A long walk at Bradgate Park, Leicestershire over the Christmas holidays. It’s the first time in 5 years I have managed to travel over there and go for a long walk with my family. It marks another new achievement since being on the new treatment protocol.
Here is my new summary video of my whole medical journey as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

For more posts of my arachnoiditis diagnosis please see the arachnoiditis menu above.

ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)

A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review

For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.

SPINAL CSF LEAK INFO: Here is a brilliant 2 min animation about Spinal CSF leaks. For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org. Please see this May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition.

Arachnoiditis, Spinal CSF Leak

BUTTERFLIES IN THE DIRT AND A NEW DIAGNOSIS: ARACHNOIDITIS AND A SPINAL CSF LEAK

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“When you look another human in the eyes (or read their stories) and see how they’ve found strength in the face of their suffering, it makes you sit up with a little more hope.” – ‘Suffer Stronger’

Katherine & Jay Wolf (my addition in brackets)

Butterflies In The Dirt

I walk a lot at the moment. And if you know my recent story you will know the profound beauty in me just saying that. But walking still isn’t always easy for me because it can both help some symptoms and exacerbate other ones, especially my head pressure issues as well as my back and legs. But I am so grateful to say that it’s been getting easier again recently – since my recent new diagnosis and treatment plan. I can now walk much further and far more than I have been able to since before my last relapse in Spring 2019.

We are so blessed to have beautiful countryside five minutes from our house. And this seems to be butterfly season. Lots of white and colourful butterflies are flying around.

But often I see them like in this photo. Resting in the dirt. Being still for a moment on the dry, cracked and broken path. And through them God always reminds me….

You can always find great beauty in the broken dirt of life. If you choose to truly SEE it.

 

‘Could I have Chronic Arachnoiditis?’

Where do I start on the whirlwind of the past month or so? A couple of months ago I had only ever vaguely heard of something called arachnoiditis. And to be honest I was at a stage where I was far too weary for much new medical research. But that word ‘arachnoiditis’ kept coming back up, it kept being thrust back into my view – however much I tried to avoid and run away from it.

I believe now it was Divine providence – sweetly nudging me to pay attention. Because I would soon need that information in a critical way.

So I began to read and research yet again – another condition – another lead… and as I did my mindset went from a ‘no that can’t be me’ to it becoming quickly apparent how well the diagnosis fitted with my whole medical journey since my ladder fall in January 2015. It was actually a very timely speedy journey of revelation – that only by God’s mysterious grace – soon coincided with my most horrendous relapse/ flare ups in the whole 5 years I have been ill – that soon had me hospitalised for two weeks.

I am actually still in a state of both partial shock and partial wonder that following so many clear acts of Divine providence (key things and key people coming together at the right time) – I finally got the correct treatment I needed that perhaps reversed a more severe or even catastrophic injury to my spine.

A Unique Story

Here is my ongoing holistic medical story in its ongoing messy glory. It’s messy – because I am a typically messy human. I don’t fit well in others ‘boxes’ because I am unique. So although I share my story in the hope it might help others, assist their loved ones in understanding and to help any members of the medical profession to understand these conditions and their long term impact on their patients; I also want you to know that my story is my own unique story.

Of a unique body with a unique biological makeup, a unique accident and a unique resulting neurological injury.

That has caused me untold suffering for 5 1/2 years.

However, one reason I write is that perhaps my unique case can help shed more light on others unique cases too. Our stories are simply that – the truth of what is happening in our life as a WHOLE person. The truth of a complicated and rare medical journey in a complicated and unique human being.

I am not sure where to begin this next chapter in my story apart from to describe the events leading up to my hospital admission and the revelation that we may well be dealing with chronic spinal canal nerve inflammation as well as a spinal CSF leak.

Spinal CSF Leak

I do not have time in this blog article to explain my medical history since I fell off that ladder in January 2015. And how I fell onto my head, neck and spine very hard. How I was diagnosed with post concussion syndrome, then finally 2 months later a spinal CSF leak. (See this original article). I do not have much room here to explain that my current NHS ‘intracranial pressure MDT’ have seen evidence on my MRI of a small CSF leak in my neck (cervical ventral spine). To read more about that please see this blog article.

PLEASE NOTE: Many of my ‘arachnoiditis symptoms’ started after that fall alongside the ‘spinal csf leak symptoms’.

They have always been very interconnected. Apart from the severe lower back/ sacrum pain. (That got worse over the latter months to years after that original fall). However, many of these key symptoms were there from that first week after I fell – it’s just the more severe pain was more in my neck rather than lower spine the first few months (Query – maybe it could have started as ‘cervical arachnoiditis’ around the potential leak site following the trauma & spread as arachnoiditis can?). My neck certainly took much impact in a funny position with my head hitting a raised ledge. All the main bruising was all down my right arm and pain into my middle fingers. I have always had major nerve issues and acute stiffness in my neck (although that is also typical of SIH neck pain). Although I also developed the severe leg weakness & gait issues and whole body tingling/ spasms & jerking etc from that first week – so I am not sure how it all works together.

And just to state here: I have not had a medical procedure in or near my spine since September 2017.

 

This Relapse/ Flare Story

This relapse actually followed my typical pattern of relapse (last one Spring 2019). There was no clear trigger this time – although in hindsight Covid lockdown brought changes to my routine that might have added to things. For about 2 weeks before it fully hit me I began to feel more unwell than usual. My forever troublesome back/ sacrum area was getting worse again and that was causing me to often lay down more than my head. I felt like I had 100 tiny pins stuck in my sacrum and down my legs. My legs started getting markedly weaker especially towards the end of short walks. I had more pins & needles in my legs, feet, saddle area, arms and hands. My head and ‘normal leak symptoms’ were also clearly worse.

So we typically asked those questions – ‘Am I doing too much?’ – ‘Perhaps I need more rest?’ – ‘Perhaps I have a virus or even coronavirus ‘(I even ordered a test). But this time there was something else. I felt like a had a UTI – and my bladder didn’t feel right. I just felt like I constantly needed the loo and there was a constant burning around those nerves too. And that’s bad for me because for years going for a wee makes my head much worse. So it was all just so painful for me. So I did a urine sample for the GP nothing came back as abnormal. Everything was getting increasingly painful & exhausting.

Then my symptoms do what they always do when I relapse or flare – like my last one in Spring 2019…

Everything suddenly EXPLODED!

Symptom Explosion

A day came – a Friday – when I got up as normal. But it was tough. It was really very tough. And within half an hour my body was flooded with that overwhelmingly debilitating draining feeling from my head down. A feeling I have known so many times. The feeling that came when I first got ill around 48 hours after my ladder fall in January 2015.

A Sense of Being Unbelievably Unwell

At that point my worst symptoms all very quickly returned: the inability to speak, the slurring, the slowness to respond. Then came the weak legs giving up and the having to pull myself back to bed. Then as I lay down back came the twitching, the jerking and the spasms. And the feeling that I may just pass out any moment – but never really do.

I cannot explain how awful it is to experience that. But it is not uncommon for me. That has been my normal since the start from after my fall – when things are bad.

But this time some things were worse. Mainly my back. The nerve pain exploded, I could no longer lie on my back at all, it was all down my legs. It all burnt, stabbed and tingled. The pain was just getting worse. I could hardly stand or walk at all.

I just felt weird, my whole body was full of pins and needles, both inside the whole of me and all over my body. A bubbling, strange sensation in my whole body – feeling stuck in another world. Mind can’t think – I struggled to process & respond.

I then started struggling to be touched by anyone. Everything was hypersensitive. Everything hurt so bad and people touching me would often just make me twitch, jolt & spasm.

Two Wonderful Doctors

By this time our (including two key doctors) minds had been opened to consider a new diagnosis of chronic arachnoiditis. As I said before – as I began feeling more ill the past two weeks I again had read more. And as I read about its symptoms, triggers, biological predispositions, links to spinal fluid flow, leakage & seepage, multiple spinal procedures and the presence of spinal cysts. It rang too many bells to ignore. So I had sent information to the two main doctors (from two different hospitals) who know my case well. My current neurologist and a doctor who has generously followed my case and CSF leak updates for years even after me moving on from their hospital. They had both already agreed that it was something that needed considering. I ticked so many boxes already … as shown in this list I made into an image.

In the end after updating our more local hospital doctor contact about my worsening symptoms that Friday, he called on the Saturday & spoke to mainly my husband – as by then I was struggling to talk and respond at all. After listening carefully about what was happening and asking various questions – he advised us to call an ambulance and then kindly in advance explained my case to the consultant neurologist on call. I am so deeply grateful for this doctor who has had so much patience and humility over the years to listen and understand my whole medical journey, in a way that he became the advocate I needed. He was my voice when I had no voice. Especially as my husband could not be with me at all due to Covid lockdown and seeing as I often feel so intimidated, scared & anxious around new doctors due to my case being so complex – especially when my speech and thought processes are so impaired.

Admission via Ambulance

The ambulance crew came and by then I was in such a whole body nerve pain flare I was very hypersensitive to touch, examination and even having my blood pressure (BP) done. It was all excruciating and would just make me jolt and spasm. I could only slur and half speak with very delayed responses. They thought I had either a stroke or meningitis. Although the stroke team at the ED soon ruled that out and the medical doctor who saw me was baffled but knew I needed to be admitted. And although struggling to speak – I managed to direct them to my medical files to read my history (as I lacked the ability to explain it myself). And after a couple of days on a medical admissions ward – I finally made it to Neurology.

At this time I had ALL the red flag symptoms for arachnoiditis/ lower spinal canal nerve inflammation/ and things were only getting worse.

Brain and Lumbar Spine MRI

I had to be very deeply sedated for my brain & lumbar spine MRI as I could not lie on my back for more than seconds to minutes without spasming/ twitching or jolting. Which really would not work in an MRI machine.

However the MRI was read as clear for both low CSF pressure/ SIH (which is normal for me) and adhesive arachnoiditis/ cauda equina inflammation or compression/ epidural fibrosis and anything else considered etc. Although interestingly at first they also missed reporting a possibly key piece of the puzzle due to seeing it as an ‘incidental’ finding.

Tarlov Cysts

I have at least 1 or 2 Tarlov cysts in my sacrum. Which I now know can both potentially cause cauda equina inflammatory disorders (CEID) but can also be the result of that inflammation. They keep not being reported from my multiple scans (I had to view my own scans and ask in 2017 for the confirmation I had a Tarlov cyst/s – but were told they are ‘incidental’.) Which I already knew is not necessarily true because Tarlov cysts can actually also become symptomatic after a fall. You can actually leak or seep spinal fluid from Tarlov cysts and they can effect normal spinal fluid flow to cause intracranial hypertension (high pressure headaches). They can also cause issues with sitting down and effect your lower extremities & bladder & bowel function. This video from a German Neurosurgeon who is a ‘arachnoiditis and Tarlov cyst specialist’ even describes Tarlov cysts as a form of arachnoiditis as well as often an additional feature. He later discussed it further here and shared his experience in surgery is that everyone with Tarlov cysts has evidence of a form of arachnoiditis. So they are VERY relevant to my condition. (See here for Dr Tennant’s bulletin on this or other medical articles below).

Other Spinal Cysts & Potential Connective Tissue Disorder

I also have an arachnoid cyst in my brain. Multiple prominent meningeal diverticula cysts in my thoractic & cervical spine. And a small pituitary cyst (I am under Endocrinology for but has remained unchanged). Could any other of these also be more than just incidental findings to my wider case – could any of them be part of a bigger picture of spinal canal inflammation/ collagen weakness/ biological predisposition – which can all be connected with arachnoiditis and spinal CSF leaks and seepage? (My NHS CSF leak team were already very mindful that about 30% of ‘leakers’ leak from meningeal diverticula.)

My Dad also has some undiagnosed key features of Marfans syndrome (including pectus excavatum & more recent heart problems) and he is tall with long thin limbs like me – which could mean I am more pre-disposed to all these things genetically (50% chance if he does have some Marfans). There are also some hypermobility features in other close family members. Although I have never been hypermobile AT ALL and was very healthy until my fall. But perhaps any such genetic predispositions could be hiding in my spine. I do have a mild scoliosis of the spine. My Mum also died six years ago following complications after surgery to remove a massive benign brain tumour. So there is a family history of neurological abnormalities there too.

Lack of Knowledge or Expertise to View scans

The first issue with scans is that arachnoditis can be very hard to see on scans until it becomes adhesive and even then many neuroradiologists miss it due to lack of experience with the condition.

The other main problem I have is that I am most doctors’ and neuroradiologists’ first known or one of their first known recent cases of arachnoiditis. Many of them do not know much about spinal CSF leaks either. So they lack experience of the conditions. I have also been informed by more expert neuro-radiologists/ doctors that you really need head to toe axial MRI images with IV contrast and/ with both T1 & T2 weighting and VERY experienced eyes to diagnose features of arachnoiditis or spinal nerve inflammation or even actual AA. (Although I am hopefully due more scans soon more like this soon and have been seeking out more experienced eyes to view them). One of the articles below also suggests that the use of ‘stir cycle’ images on MRI might help to spot the neuro-inflammation.

Pls note: I went on to get radiological support for the diagnosis.

Medications

Whilst waiting for the MRI and deciding what to do, Neurology put me on pregabalin for the excruciating nerve pain, pins & needles & hypersensitive reactions etc. Diazepam for the spasms, jolting and jerking, paracetamol, laxatives. And I was already prescribed zopiclone by the GP that I tend to mainly only use during ‘flare ups’ because I always develop severe insomnia. (Another typical arachnoiditis symptom).

The combination of these medications did help me and eased some of the symptoms and allowed me to sleep more. I finally got my voice and mental clarity back so could begin to self advocate again and help the doctors to better understand my case and journey. But I was still stuck lying on my side with legs that hardly worked, bladder & bowel issues and pulling myself to the bathroom whilst walking on tip toes because my feet burnt & legs hurt too much to have my feet flat on the ground.

Dual Hospital Team

By then my more local hospital neurologist got in touch with my specialist low pressure/ spinal CSF leak neurologist (from another UK NHS hospital) who at that time happened to also be treating a friend of mine (from the online leak support groups) for early onset arachnoiditis following various spinal procedures at another separate hospital. So he was learning fast about the condition.

That friend has also been the absolute star who first provoked me to start looking into arachnoiditis due to her sharing her own very courageous, but deeply devastating recent journey of getting a spinal CSF leak following a lumbar puncture (multiple attempts) from another different hospital that went very wrong.

Then in embarking on the journey of getting that fixed she developed acute arachnoiditis. (If it is diagnosed and treated with (IV) steroids in the first 60-90 days you can completely reverse it and prevent it becoming adhesive) (Read this medical article for further details)

So she and my normal neurologist (whom she had approached for help) had already been learning so much – which was one of the timely things that helped me so much in my own time of desperation and need. For that special friend – I am forever grateful.

IV Steriods

It was finally agreed by my hospital Neuro team, my normal specialist neurologist (from the other hospital) and the hospital anaesthetist who had done two of my epidural blood patches in 2015/16 who was also involved – to trial me on the emergency treatment for arachnoiditis. Mainly as the risks and side effects of the treatment were lower than the risks of leaving me with a potentially severe arachnoiditis flare up which could be causing me more permanent damage & adhesions.

So they trialed me on 500mg of IV steroid methylprednisolone – the first dose carefully observed but I responded very well and straight away felt a boost of more clarity, energy, eased symptoms and stronger legs. So I then I had a total 5 days of 500ml IV steroids methylprednisolone.

Results of Steroid Treatment

The results of the 5 day treatment were actually quite dramatic in reversing this flare up.

The main change was probably to my legs. I could finally walk more normally and started walking up and down the ward, then out in the wider hospital, then I ventured for 30 mins to 1 hour walks around the grounds. This often included walking up 6 flights of stairs to the Neuro ward. This was a million miles away from willing & pulling my unimaginably painful, burning and tingly legs to the nearest bathroom.

My mental clarity returned so that I went from hardly being able to speak, to speaking with more clarity on the other medications, to finally being able to have hour long conversations and speak to the staff and other patients more easily.

The back pain, pins & needles and burning reduced considerably. I could lie on my back more (although still very tender – but that has been normal for years). I had a lot less leg pain. My photophobia radically improved and I could remove my sunglasses and stop covering my head. The meds had dealt with a lot of the jolting and twitching – but that now completely disappeared. I still had positional head pressure that got worse the longer I was upright – but I could be up for so much longer than when first admitted. My bladder and bowel also began to function more normally (although going to the loo still makes my head worse).

I did so well that I was finally discharged 2 weeks after my admission. Having not been able to see my husband, kids or any other visitors due to Covid lockdown restrictions.

Diagnosis from my Normal Neurologist

The next day I travelled to see my wonderful normal spinal CSF leak specialist Consultant Neurologist who was given the task of continuing my follow up. He had been kept informed about what had been happening during my stay at the other hospital and had been consulted. But obviously again still took down all the history of recent weeks and did his own neuro examination which actually showed after two days off the IV steroids some things were getting worse again and I found the examination more distressing again especially in my back and legs.

So he made a clinical diagnosis of arachnoiditis (we cannot know if it’s become adhesive at all over the years without scan evidence – so that needs to be investigated) as well as a spinal CSF leak.

He put me on an oral prednisolone taper as well as diclofenac (for neuro-inflammation), pregablin, omeprazole (to protect stomach) and very occasional use diazepam if needed (only used so far for travelling as sitting in the car for long journeys can still be torture). Restoring the (oral) steroids helped to again reverse things getting a bit worse again after the IV treatment ended.

Improvements Continue

It’s still early days but I can report that my legs continue to get stronger and I am now walking at least three times a day from 20 mins to 1 hour at a time. (I have not been able to do that since before my last relapse in April 2019). I am keeping this routine because walking and gentle stretching is thought vital to help stop the disease progression and nerve adhesions developing. And walking and gentle stretching exercises can potentially help any scarring and adhesions that might already have been there. My 5 year journey has also shown my best times came from more walking (but within balance) when I was able to. So that gives me confidence that it is of key importance.

So I am thankfully doing much better than I was.

A key feature being I can be upright a lot more than I have been able to for over a year and my head is much clearer than it has been for a long time. I still have many issues – so fatigue or the sacrum nerve pain is often the main thing still causing me to lie down to rest currently – although my head issues are always present too.

But I am so happy that we have perhaps reversed me moving more permanently into a more severe category of disease progression at this time and for that I am so very very grateful and thank all my doctors who worked as a team to help me.

The Tennant Foundation

I have to also say here that I am immensely grateful for all the expertise, medical articles, research and even direct emails from the founder of ‘The Tennant Foundation Arachnoiditis Research & Education Project’. Although in his late 70s and retired from clinical practice Dr Forest Tennant continues to offer so much advice, support, research and help to patients with arachnoiditis, AA or chronic cauda equina inflammatory disorders (CEID). It is his hard work and ongoing research (amidst others) that has helped myself, my dear friend who helped me & my specialist Neuro and many other doctors learn so much through his work.

Useful Links from Arachnoiditis Experts including Dr Tennant….

‘Arachnoiditis – Taming the Most Painful Pain’ video
https://youtu.be/VGuS1iTuhLo

Arachnoiditis: A Clinical Update https://www.practicalpainmanagement.com/pain/spine/adhesive-arachnoiditis-no-longer-rare-disease

Patient & Family Handbook for Adhesive Arachnoditis http://arachnoiditishope.com/pages/wp-content/uploads/2019/02/Arachnoiditis-Handbook-5th-Edition-2019.pdf

Then this was also helpful to myself & my doctors… Dr Sarah Smith: The Arachnoiditis Syndrome http://www.arachnoiditis.co.uk/index.php/information/medical-papers-2/124-the-arachnoiditis-syndrome-dr-sarah-smith

And this other article of hers is interesting and highlights that a normal MRI does not rule out the diagnosis of arachnoiditis. https://www.practicalpainmanagement.com/pain/spine/adhesive-arachnoiditisa-continuing-challenge

And this: Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) https://www.practicalpainmanagement.com/pain/spine/suspecting-diagnosing-arachnoiditis

Ongoing Journey

So I am at the start of a new medical journey… As well as 5 1/2 years into it. I am still not well or normal by any means. But I have made massive improvements since this recent flare & in many ways on how I have been for about the past year since my last relapse. I still have intracranial pressure issues. I still have major sacrum nerve pain problems – but less than I did. It’s also very hard to know what could be directly related to the arachnoiditis/ possible AA/ chronic cauda equina inflammatory disorder because these can all effect spinal fluid flow and can cause leakage, seepage and can cause spinal cysts to form/ grow which can then add to inflammation issues. My head seems better than it has been in a long time – but still has many issues.

What is simply the spinal CSF leak? What is connected to the new things were are learning about now? It’s hard to know.

Multiple Spinal Procedures

I still believe this all started as a direct result of that fall and my biological predisposition. I had so many of these symptoms for the two months before my first ever spinal procedure (a lumbar puncture to check pressure which was a 7 at the time). However, my multiple spinal medical procedures (1 diagnostic LP (OP 7), 4 BEBP, 2 LP’s for Cisternogram (OP 10) & CT Myelogram (OP 11) and 1 LP accident instead of an EBP), may well have added to my spinal nerve inflammation issues in different ways. I often found EBP could clearly help some things but as time went on they could also could cause flare ups of intense pain in the following weeks/ months too. We often wondered if this was due to Rebound High Pressure issues, but perhaps it was also (or perhaps more of) an inflammation flare.

My CT Myelogram in September 2017 also caused a seizure within a couple of hours of the procedure (perhaps that was partly due to both the horrific pain, contrast irritation or me staying lying flat afterwards). My already acute symptoms then became even worse – including my weak legs, restricted gait and ‘drunk head’ sensation. So they admitted me – then requested an EBP (although the first attempt became another LP unfortunately). I then had a massive spinal and non-positional head pain flare for at least two months after that (although interestingly I could also be upright more than before the EBP). But the constant pain and often nausea around that time again- at times- left me feeling suicidal as it was so unrelenting. Until I instinctively started walking rather obsessively – which again may have been my saving grace back then as walking can help prevent adhesions forming.

I am NOT Angry with Doctors who Tried to Help me

I feel no resentment at all towards the doctors who requested those procedures or did them. They were trying to help me with ongoing debilitating low pressure headaches as best they could and didn’t always understand these other complications well. Many of those doctors also fought their own battles to try and help my case at the time – so how can I be angry with them doing their best for me according to what they knew then? Also some of those same doctors have been wonderful at listening – and absolutely instrumental – in helping me now which helps the sense of learning together. And learning together means learning through both the good and the bad – especially in rarer/ misunderstood conditions. So as long as they will now also learn lessons from my case in being much more aware of complications such as arachnoiditis and spinal nerve inflammation, then I remain grateful for all their help on my journey.

I DON’T expect doctors to know what they just don’t know. But I DO expect them to listen, learn and consider with humility when new possible complications and complexities emerge they may have little current understanding of.

Other Previous Flare Triggers

Also I have equally had flares/ relapses due to a second bad trip and fall in May 2017 or over-exercising perhaps without also reducing neuro-inflammation (esp a few weeks following my second EBP in November 2015 from which I had actually seen much low pressure symptom improvement). However, I tried some heavier exercise due to all the residual neck, spine stiffness, pain and ongoing head issues – but this ultimately lead to a serious pain and awful symptom flare including severe insomnia 6 weeks after the patch & my first serious mental health crisis.

I have had other flare ups perhaps triggered by long car journeys, or even plane or bus rides, like in April 2019 after a holiday to Italy which again also caused a very serious mental health crisis too due to severe insomnia and constant unrelenting awful pain. See my A Window into a Suicidal Mind blog post. (‘Bucket seats’ like in many planes & cars are reported as really bad for arachnoiditis/ AA patients). And perhaps this time the Covid lockdown added to the flare because I was doing a lot less walking and natural physio (shopping & driving locally) than before which I now understand is so important to stop disease progression. We must keep walking and moving to stop nerves sticking and clumping together.

The Next Step

The next step is hopefully to continue with a low dose anti-inflammatory/ steroid treatment and gentle exercise protocol. But that is all to be discussed further with my GP & Consultant Neurologist. I also need more appropriate scans and to get them read by someone with more expertise. (I am currently waiting for a further outpatient MRI at the hospital I was admitted to.)

I know from experience that having the ‘evidence’ many doctors like to see isn’t always possible. But not having it doesn’t mean you do not have these conditions. (It took 4 years and multiple scans for a neuroradiologist and neurologist to spot a suspected spinal CSF leak in my neck.) I know people whose scans have been read for years by top neuroradiologists, neurologists and neurosurgeons who have all missed CSF leaks, arachnoiditis or AA that has only been picked up by a specialist on those same scans some years later.

Sometimes we unique patients do not ‘tick all the boxes’ or give the desired evidence – especially with rare / misunderstood conditions – as I wrote about in my widely shared post ‘Dear Doctor, A Letter from Your Naked Patient.’ But it doesn’t mean we are not exceedingly unwell.

Sometimes the truth is there – but it’s hiding – and can’t be seen by most doctors until someone more knowledgeable gets involved or those same doctors spend a lot of time researching these conditions to make the necessary connections. Also arachnoiditis will often not show on scans unless it becomes adhesive.

Which is why a clinical diagnosis and emergency treatment – without scan evidence – can be vital in preventing potentially catastrophic adhesions and nerve clumping which may only show on scans once that patient is significantly permanently disabled by the condition.

Gratitude for Doctors

I will keep on pressing forward. Seeking more answers. Looking for the correct treatments and working with some of the wonderful doctors I have supporting me on this journey – both old & new.

Without an open minded and open hearted multi-disciplinary team of doctors across two hospitals coming together to help me in recent weeks. – including the two key doctors who have followed/ dealt with my case for years – my current prognosis could no doubt be even more bleak. I have never been THAT bad and so many red flags were being raised that I was perhaps moving into realms of more permanent spinal damage if left like that. Especially if things could have been becoming more adhesive.

Some people with severe adhesive arachnoiditis can end up paralysed, partially paralysed and incontinent and possibly with intractable pain syndrome IF they do not receive the right treatment and ongoing treatment protocols at the right time. So if someone is in a seriously debilitating ‘red flags’ flare, like I was, then it should be considered a medical emergency.

The Joy of Gratitude

I am so deeply deeply thankful for all the support I have had from my ever faithful, constantly sacrificially loving and understanding husband and very resilient teenage daughters. As well as many wonderful doctors, other fantastic medical staff, our family, special friends (already battling these conditions), our church family who have cooked and prayed hard for my family and looked after us and many many more supportive professionals and friends. And that gratitude and wonder is something I will allow my mind to keep pondering, to keep meditating upon – even whilst I continue on my journey of enduring what is often the burden of unimaginable daily struggle & pain.

… Although at this moment in time that is a bit easier than it has been for a long time.

Because to remain grateful in suffering – to keep remembering all the abundant love, support, care, kindness and compassion you have been shown by God and others – is a big part of always seeing that beauty in the brokenness.

As I keep being reminded of every time I see, yet another, stunningly designed, beautiful butterfly resting in the broken and cracked dust & dirt.

There is always beauty to be found – even in the dirt. IF we will keep our eyes & heart open to SEEing it.

“When we are grateful, we are most fully alive. Gratitude allows us to absorb every possible pleasure from a moment…. When your heart is full of gratitude, life paints itself in far brighter and more vivid colours…Life becomes an endless celebration… There is always something that fills you with joy & unleashes hope and inspiration.”

From ‘Uprising’ by Erwin McManus
Here is my new summary video of my whole medical journey as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

For more posts of my arachnoiditis diagnosis please see the arachnoiditis menu above.

ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)

A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review

For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.

SPINAL CSF LEAK INFO: Here is a brilliant 2 min animation about Spinal CSF leaks. For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org. Please see this May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition.

Spinal CSF Leak

Enduring the Pain of a Chronic Spinal CSF Leak

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“Try to understand others. If you understand each other you will be kind to each other.”

John Steinbeck

Trying to understand others is a big motivating force in my life. I have learnt from experience over the years that the more we can TRY to understand others – and they TRY to understand us – the kinder we will be to one another. Ignorance about others’ lives and what they have had to deal with in the past, or what they currently face now, is often one of the reasons we misunderstand and judge others behaviour and words. Listening and more understanding, on the other hand, is often the key to treating people with more love, grace & compassion in every way.

This is one of the reasons I have tried to tell my own story over the past five years as honestly as I can. To help me to understand and process my own journey. To also help others to understand me. But probably most importantly to try and help others suffering to not feel so alone and misunderstood.

I want to use my writing abilities to be a public voice and advocate for the suffering and oppressed – to help them express and understand the inexpressible within themselves and to help those around them to also understand. Whilst also providing a window to those in the medical profession to help them understand spinal CSF leak patients better.

“Speak up for those who cannot speak for themselves; ensure justice for those being crushed.”‭‭

Proverbs‬ ‭31:8‬ ‭

Many doctors have no idea how much damage they can physically and mentally do to their spinal CSF leak patients due to their own misunderstandings and ignorance of the condition. As I wrote about in Dear Doctor, A Letter from your Naked Patient.

My Background Story

In January 2015 I fell off a small step ladder whilst painting and hit my head and spine hard. Although a little dazed and bruised at the time, I generally felt OK. But over the next 48 hours I started to feel more and more unwell until I was left predominately stuck in bed in a dark room (to read more about that see my original Living with a Spinal CSF Leak post or Surviving the Storm post). At first I was diagnosed with a concussion, then post-concussion syndrome. But finally after admission to hospital 8 weeks later with things not improving and in some ways worse (on my third trip to the ED) – I was diagnosed with a spinal CSF leak.

Although my cranial and spinal MRIs were deemed normal at the time, I was diagnosed after 2 weeks of observation on a NHS city hospital neurology ward where it was obvious I only ever felt well lying completely flat. I also had a diagnostic lumbar puncture which was low (7). (Although I would never recommend using LPs to diagnose because of the high risk of a new leak and the fact that about 60% of leak patients will not show low pressure anyway*). I also then had 5 much better months directly following a blind lumbar 30ml epidural blood patch before fully relapsing again that September.

I have now had 4 blind epidural blood patches – all gave me obvious consistent relief for weeks to months. Although never fully and always transient. I have also had countless MRIs, a cisternogram and a CT Myelogram. Although it is only recently that my UK CSF leak team have flagged seeing a suspected leak on my spinal MRIs.

High & Low Pressure Fluctuations

Over the past 5 years I have experienced months of being almost constantly flat in bed and months of being upright all day (following epidural blood patches). But never symptom free and always struggling with hypersensitive reactions to normal pressure changes in my skull. At times after blood patches my symptoms have also typically seemed to shift into a more high pressure pattern of getting worse lying down and better upright. Although those times were also very confusing – as they often are for many spinal CSF leak patients who experience hypersensitive pressure fluctuations. Which can be even more heightened after treatment/ healing.

I have discussed this with a number of people over the years. There is an online support group for patients experiencing symptoms consistent with Rebound High Pressure symptoms and treated for such symptoms.

My friend Lisa’s experience of pressure fluctuations and rebounding from low to high pressure following spinal CSF leak self healing is documented here. (Also found at Series 2 Episode 6 here: www.nationalmigrainecentre.org.uk/migraine-and-headaches/heads-up-podcast/)

Micro-Managing ICP Equilibrium

We were actually recently discussing over Twitter how spinal CSF leak patients both before and after treatment/ healing become experts in ‘micro-managing their ICP (skull pressure) equilibrium’. Bending, carrying, lifting, stretching, straining, going to the loo, shouting, singing, twisting, exertion, opening stiff jars, lifting a full kettle, travelling on bumpy roads, stress & anxiety etc etc all tend to send pressure bursts/ waves into our head. Which when we are leaking, just seem to also make us leak more until it builds and we can no longer maintain a manageable pressure equilibrium in our skulls.

So to manage the condition, I have to ‘micro-manage’ my ICP. For me this means avoiding many of the things I mention above as much as possible or plan them before I lie down to rest. I also ask my family to lift/ carry/ bend for me as much as possible. I use a ‘litter picker’ stick to pick things up off the ground. I often try to delay using the loo until before I know I can lie down where possible. I also stand up most of the time I am upright because sitting makes me worse far quicker for some reason. (Perhaps due to the location of the leak and the stretching of the dura from sitting down.) Keeping my spine completely straight is my key to more upright time. And reducing the ‘pressure busts/ waves’ in my skull which build up to make me progressively worse until I cannot tolerate the symptoms any more.

How it Feels To Have a Spinal CSF leak.

Please note these symptoms are there every day without fail. This pattern is consistent each and every day.

The best way to explain it, is like an ever-increasing overwhelming dull pressure/ intensity in the head. As it gets worse (over minutes to hours depending on how acute the leak is), you feel more and more detached from the world around you. That feels a bit like being drunk/ or using ‘gas and air’ – but accompanied by a heavy, pressure pain. The pressure is in the whole head but I feel it particularly in the occipital area, in my neck and behind my eyes. At its worst it is accompanied by a ‘pulling sensation’ which leaves you feeling like your head is being pulled into your neck. Or that your neck isn’t strong enough to hold your head up. Also many of the nerves around that area hurt more and more.

It just builds and builds until your brain starts shutting down. You can no longer think straight, process well, everything feels impossible, you become disoriented and confused and you can feel very very nauseous and I sometimes even want to gag. Although never actually vomit like some people do.

I also get pain in the bottom of my spine which gets increasingly worse. So I have described to others that it often feels like I have a metal rod going through my spine with a clamp at the bottom of my skull/ top of my neck. And one at the bottom of my spine. The sensation is then like someone is tightening the clamps either end so that my spine is being tightened, shortened and my skull is being pulled into my neck.

I imagine that it’s simply the sensation of your brain ‘sinking/ slumping’ into your skull because of the intracranial hypotension. Caused by the lack of spinal fluid to keep your brain in its cushioned, buoyant place. I think then this causes me to feel tension throughout my spine hence the clamp feeling.

The overriding feeling is…

‘I CANNOT COPE.’

I cannot cope…. with this intensity in my head.

I cannot cope …. with this level of pain & trauma.

I cannot cope …. with thinking and making decisions.

I cannot cope… with attempting to formulate words to explain what is happening.

I cannot cope …. with attempting to function whilst my body and brain feels like it is shutting down.

I cannot cope …. with this impossible illness.

My husband says I become vacant, distant and increasingly slow to respond as it becomes obvious that I am in a bad way.

Those feelings just increase until you feel like…

I CANNOT COPE WITH ANYTHING!!!
I MUST LIE DOWN & REST!!!!

You then think about the best quiet place that you can lie down flat in that moment….

Like a drug addict needing their fix….

…. Or a person in perpetual excruciating pain needing a morphine injection.

It’s obsessive.

My ‘morphine’ or ‘drug of choice’ is to lie down.

Morphine itself doesn’t work nor do any other pain killers. ONLY lying down/ resting works. Hence the debilitation.

The Impact of Lying down To Rest

As I lie down flat I feel a wave of relief as, almost instantly, things get easier. It can take anything from seconds to minutes to begin to feel the easing of symptoms. Although if things have got too bad because I have pushed myself too long, gone out for a longer walk or if I have just been on a longer car journey, it can take up to an hour-plus for my symptoms to fully calm to more manageable levels – where I feel more fully relaxed again from the extreme tension and trauma in my brain and body.

But as it does ease, it’s like your head slowly begins to clear. The intensity gradually eases. The ‘clamps’ loosen. The pain begins to dissipate. The brain fog and confusion gets better.

I can finally think and talk more clearly again.

I feel more normal again … although never fully normal. Never how my head used to feel before the accident.

At my worst times – when I was probably leaking most acutely – after being upright too long (sometimes a matter of minutes) I would not even be able to walk or talk properly. My speech would become slurred and incomprehensible. My legs would turn to jelly and I would struggle to walk without holding onto things to pull myself back to bed. And everything would feel like a dream.

My brain would just begin to completely shut down.

Until I would HAVE to lie down, as if being saved from drowning in pain, trauma & confusion… and after 5-10 minutes of lying flat I could think and talk more normally again.

Countless doctors and nurses in hospital over my various stays observed this which helped confirm the diagnosis at that time.

Those were more my classic spinal CSF leak symptoms. My problems with doctors came when those times were extended to hours or even most of the day of being upright. Especially after epidural blood patches. That is when many spinal CSF leak patients fall through the ‘text book diagnosis’ cracks. Into the ‘chronic migraines’ or ‘NDPH’ (New daily persistent headache) or chronic fatigue boxes.

And yet I know hundreds of patients in the UK/ world wide who can be upright most, or even all of the day, with spinal CSF leaks still evidenced on their scans or found in exploratory surgery – proving that it is possible, and actually more common than once thought (as any up-to-date research on the subject will tell you). Some patients with all the symptoms but no scan evidence turn out in exploratory surgery to have a thin membrane covering the leak which stops them fully healing but provides enough covering to not show on scans and give them more upright time. Some of these patients started off leaking through a simple lumbar puncture, but were previously told by doctors that they definitely could not be leaking still, and suggestions made that they ‘spend too much time on Google’ or it is simply ‘all in their head.’ Which regularly pushes very unwell patients into deep despair.

This is part of what makes this condition very difficult to endure.

The fact is that lying down not only helps much of the intense, traumatic pain. But it also helps my focus and ability to concentrate so much. This means that I often opt to lie down to write messages or emails to people, or talk on the phone for extended periods – simply because I can ‘think straight’ lying down – much better than I can upright. Especially if I have been upright for a while.

I normally write most of these blog posts lying down too.

Current Symptoms

I currently find I have about 1-4 hours upright AT A TIME. Generally more first thing in the morning and if I am well rested. Before things get too unmanageable and I have to lie down again for 1-2 hours to recover. I am then up for a while then down again throughout the day. I have also learnt to generally try and pre-empt when I really need to ‘get flat again’ so it doesn’t get too bad. Otherwise I can’t cope and it takes me longer to recover. Some days – like today – I am more up and down like a yo-yo for shorter time’s to try and avoid longer periods flat and do more writing or things on my phone lying down.

This has actually all been much easier for me in COVID-19 ‘lockdown’ because being at home all day means I can plan my lying down breaks much more easily. It’s extended periods upright outside of the house which are hardest for me.

However, as much as lying down is my ‘painkiller’ of choice. I must tell you that it doesn’t always ‘make all the pain go away’.

We Do Get Pain Lying Down Too

I live with a constant underlying dull head pressure and pain to varying degrees. Since my accident I have never had a fully clear head without any pressure, fogginess or pain at all.

Not one day, not even for one hour.

I imagine that everything is so messed up, inflamed and damaged in my head and spine these days and with my ICP equilibrium. That the pain and feelings of pressure (to differing levels) never really fully leaves. And often if I ‘over do it’ either upright or trying to do too much lying down. (A lot of typing, reading or talking). I can get a different type of headache on top of my normal one. A very painful more frontal headache, combined with a feeling of pressure and nausea. That can really stop me in my tracks for a bit. I actually feel it a bit now as I write this on my iphone whilst lying flat. I imagine it’s partly the exertion of holding my phone, and typing a lot on it. Whilst also concentrating to write. Sometimes normal painkillers can help this additional headache a bit but not always.

That kind of headache makes me feel very sleepy and I yawn a lot to try and release the pressure. If I then get up I often feel my ears popping as if my pressure is trying to equalise again. I still obviously have a lot of problems regulating my skull pressure.

I must also add here that I can also get those ‘pressure bursts’ I mention about being upright – lying down too. If I stretch, move or turn over too quickly, speak too loudly or even ‘pass wind’ (funnily enough – that’s how sensitive my head is!!!) I get a tangible wave of dull pressure and pain into my head. That can also make me feel rather light headed for a few minutes. But it normally eases again lying down if I am still and quiet for a bit – but not always.

The Vicious Cycle of Stress and ICP Regulation

Stress is also a MAJOR problem for spinal CSF leak patients. Due to the natural increases in ICP stress and anxiety brings – it is one of our worst enemies. Which is a major problem when our symptoms and the resulting debilitation are SO stressful, and at times traumatic, to deal with. I fully believe that the 2-3 major mental health crisis’ I have experienced were in seasons of major stress caused by the trauma and exhaustion of dealing with the illness and trying to get medical help long term. As well as experiencing relapses and pressure swings post treatment.

That is when I go from manageable head pain (if I have consistent lying flat breaks). To unmanageable, perpetual, excruciating, persistent head pain.

Upright AND lying down.

It is the EXTRA PAIN (on top of the normal more positional spinal CSF leak symptoms) that pushes me ‘over the edge’. And that level of pain feels impossible to deal with. That is what happened when I fully relapsed last year and later wrote this article as a window into the torturous suicidal mind.

At that point I had relapsed again and was desperately unwell physically AND mentally. I saw my neurologist in May 2019 and we were rather confused as to whether my symptoms could be high or low pressure related. Due to some features that looked more like high pressure linked to terrible symptoms on a recent flight to Italy on holiday and previously head pressure and pain lying down and in the night/ early morning. Although after an ‘acetazolomide trial’ (a drug used to reduce ICP) made my symptoms doubly worse until I could hardly move, walk or talk upright at all. It became clearer that it was probably another low pressure relapse. And after a few weeks following the full relapse my symptoms fell into a clearer low pressure pattern anyway of symptoms being greatly reduced lying down. (Especially once my sleep was restored & extra Neuro pain helped by medication from the GP – Mirtazapine, Zopiclone & Nortriptiline which was approved my my neurologist.)

These confusions about pressure are very very common as there are so many symptom overlaps between high and low pressure and their differences are often not clear cut. ** They can also have paradoxical symptoms which can confuse many. I know people with low pressure sounding symptoms that turned out to have IIH. It is also possible to have high ICP/ OP readings from intracranial monitoring or LP AND a spinal CSF leak. (I know of many people who have had normal or high pressure readings (one with an OP of 45 and I have heard with someone with over 50) WITH an evidenced spinal CSF leak. So it’s never a simple process to know what is going on.)

Also Rebound Intracranial Hypertension symptoms following treatment – although increasingly documented are often sneered at or laughed at by most neurologists. I was onced asked by a neurology consultant secretary after none of the neurologists in the office had heard of it… “did you see it on google Mrs Hill?” in a sarcastic tone. It’s this kind of experience that just leaves you feeling stupid about the complexity and debilitation of your symptoms. I replied, “Yes you can find it on google – can I send all the links so someone can actually consider it.”

Holistic Calmness to Manage Symptoms

So, regarding all this, and as I have previously written about – holistic calmness is often the key to managing a chronic spinal CSF leak. But calmness is not easy to come by when you deal with the stress of everything I have described above. Calmness for me has to go so much deeper than for the average person to try to maintain enough balance to keep my symptoms under control.

I tried to explain this once to a friend of mine who is also a doctor. My ‘normal ups and downs’ are so exaggerated by this condition that I imagine what to ‘normal people’s’ body and mind might feel like small changes in equilibrium – to me is felt so much more acutely. Hence some doctors will perhaps purely attach such issues to a patients lack of mental and emotional stability, rather than recognising the underlying physical medical problem creating these ‘mental and emotional’ swings and issues.

Mental Health & CSF Leaks

As I have explained again and again to both patients and doctors – You cannot separate the physical and psychological in any medical condition… But especially in this condition. I like to call the combination of the physical and mental in spinal CSF leak patients and during recovery as ‘a big ball of mess!!’ Where it is impossible to know where the physical ends and psychological begins.

You just cannot separate them.

Especially due to the way this condition effects our ICP (head/ skull pressure) and how that then both responds to stress & triggers stress.

When I say: ‘I CAN’T COPE!’ It’s not normally because I cannot cope in my mental health – per se. It’s mainly that I cannot function physically in that moment so then cannot cope any more mentally with the physical trauma of those symptoms either.

Once I lie down for a bit “I CAN COPE” much more.

But anyone will tell you when you are in a lot of pain or feel really really ill physically – you also struggle to cope mentally too. So the more I try and push my body to do what it struggles to do physically, the more pressure that puts on me mentally and emotionally. Causing this vicious circle where the physical and mental simply feed off one another and you can end up in dangerous places psychologically too. This is why many spinal CSF leak patients can have both underlying depression & anxiety AND be prone to major mental heath crisis’ when their body and mind pack in after trying to ‘push through’ for too long. I believe we are massively more at risk of complete physical and mental breakdowns than the normal population.

I never had any mental health issues at all before my accident. All my problems have always been directly linked to my medical condition – as confirmed by both psychiatrists and the counsellor I have seen since.

Why I Share My Story Publicly

So there is more of my current story of battling a spinal fluid leak (and at times more recovery) for 5 1/2 years. This condition is still so often so unrecognised, under-diagnosed and so misunderstood that it causes many patients untold amounts of extra pain and distress.

This is seen again and again and again when you hear the hundreds of stories in the private Facebook UK and International Spinal CSF leaks and recovery support groups. Most patients have a MAJOR battle to be heard and it causes them untold trauma physically & mentally that can effect them well into the future. Even if they can and do more fully recover in the end.

That is one of the reasons I continue to share my story. To be a voice for others struggling – as much as for myself. To try to reach some who are suffering so deeply and feeling so alone and misunderstood. And to help their family, friends and maybe even their doctors understand this condition better.

Case Update

In my own case – I am still working with my UK NHS specialist neurologist and his intracranial pressure team to try and find a way forward to help me. At the moment this includes considering Digital Subtraction or Dynamic CT Myelograms to try and locate the actual leak site (which is often very complex and hindered by the fact that my last CTM caused me to seizure) or trying a fifth blind epidural blood patch as these have helped a lot in the past.

Although the current pandemic had delayed all that somewhat. And our NHS – although wonderfully free at point of access – is also often very very slow. Particularly for patients needing multiple scans and procedures to help them with long term conditions such and this.

So mostly I have had to learn how to live with this awful condition and find the best life I can within all of the pain and restrictions. And this is where I am immensely thankful that with the help of my amazing husband, family, church family, many friends and the spiritual support from my faith. As well as some wonderfully supportive doctors I have discovered on my journey. I have found a way to live and enjoy life – amidst all of its pain. With God’s help I have found purpose, meaning and hope even amidst so much personal destruction.

So I want to encourage all those reading this today. That even if your life will never return to what it once was. There is still more beauty, joy and meaning to be discovered here and now. It will take a lot of grieving, support and wrestling through the journey. But to find more meaning within it perhaps you could reach out to support someone else, help educate others about CSF leaks, volunteer for one of the CSF Leak charities or find new creative ways to use your skills & expertise to make a difference in our world.

Your Life May Never Look Like How You Once Imagined It

But maybe rather than giving up hope we need to re-imagine a life that IS worth living. Through grieving the losses deeply – accepting our new reality – but then by finding a new way of living. Here and now. As many others have had to do before us.

My story is a testimony that it is possible to rediscover a new way of living even when you are not yet well. A spinal CSF leak is not the end of everything.

It may be the death of the life you were living, or imagined you would be living.

…But sometimes it is also the beginning of some new things discovered that can be even more beautiful than what you knew before.

“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.”

Dale Carnegie

UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.

Here is my new summary video of my whole medical journey as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

This post is a continuation of my Living With a Spinal CSF Leak post that I wrote 3 years ago. To read more about my spinal csf leak journey then please see the Spinal CSF leak tab in the top menu.

*Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic over 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

**Please also see this other in depth 2018 medical paper about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate diagnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others. 

God & Spirituality, Suffering & Grief

Finding Peace in the COVID-19 Storm

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It feels stormy out there right?

Everything is so strange. In one moment our whole world has changed. A surreal season which we are struggling to understand. To catch up with or comprehend.

And as time goes on…

We all know people deeply affected by this world-wide tragedy. Those who got sick and recovered. Those who never did recover and so sadly lost their lives. NHS & care staff working on the frontlines dealing with new levels of stress, pressure and anxiety that those of us stuck at home can hardly fathom. Our day to day lives so completely transformed.

Will we ever return to the normality which was once known?

Can we truly find peace in this uncontrollable storm?

Our chaotic unpredictable universe is reminding us of how out of control our lives often seem. We have again recently all had to face our own mortality and brutally realise how fragile we truly are.

Is anything certain any more? What does the future hold for any of us?

It feels stormy out there for so many. But it also often feels stormy in here too – right? Within us, in our chaotic minds. In our homes, families, relationships and lives.

Chaos is not at its worst outside of us. It’s actually most dangerous when it takes over within us.

How can we find stillness in chaos? Is it even possible without escaping from, or numbing away, our anxious thoughts? Or in trying to escape or distract ourselves from the reality of the current major struggle in our world?

These are important questions. Ones that I have had to dig so much deeper into and wrestle with a lot over the past five years since I fell off a ladder in January 2015 and sustained a debilitating brain/ spinal injury that I still have today.

In that one moment my life suddenly rocketed out of my control. One day I shifted onto a new life path I was never meant to take. A place I had not planned for or envisioned to live or endure.

These current restrictions due to the Coronavirus lockdown are actually not so strange for me, because the past five years have kept me predominately at home anyway. And for many hours a day lying down to control debilitating brain and spinal pain and other symptoms which means I still spend an awful lot of time in bed or on the sofa.

So many times my life felt devastated, as the restrictions and debilitation overwhelmed me. I watched so many around me continue on with their ‘normal’ lives whilst mine remained somewhat ‘on hold’ and out of control.

…. until ‘one day’ I would hopefully get fully well.

Then things could return to ‘normal’ I could again shift back onto the path I should be on.

But I never did get well…
I never got to take back control…
My old ‘normality’ never came…

So I have had to learn how to live here. To find a haven of peace even when the storm rages. To let go of my need to try and take control of my, or others, destinies. To climb out of the box of ‘normal living’ to embrace new spaces found in the ‘abnormal’ reality here.

It’s not an easy journey.

I know that so well.

It’s painful! It’s full of grief.

But it’s full of wonder and profound new discoveries too.

The letting go of control.
Of embracing a new way of living.
Allowing old dreams to fade.
So that new ones can arise.

I have had to adapt, I have had to change so much so as to find a new way of life that can be lived in this place. To discover new hopes and dreams within all of the restrictions. Rather than constantly grieving the life I hoped to be living right now.

I have had to dig deeper. To find peace and stillness – even when life doesn’t look like how I imagined it before.

Through all of my wrestlings I have discovered a deeper peace that I know is always there to be found. If I will continue to ‘let go of the old’ and ‘embrace the new’. Settling in my heart that change must come and that life can still be lived in the midst of all the restrictions and pain.

I must look for the firm foundation amidst all of this shifting sand.

Where is this unchanging peace found?

In my experience there is only ONE true and reliable avenue to discovering lasting peace. A peace that is described and experienced as ‘passing all understanding’. It’s unfathomable because it is not based on your circumstances going well. It’s not reliant on a peaceful place being found. It’s not even discovered only when everything is quiet & still.

Because for me… true peace is not the ABSENCE of something. It’s not a place where there is no longer struggle, pain or discomfort. Instead my experience of peace is the PRESENCE of something far more beautiful.

To be exact – my peace is the PRESENCE of SOMEONE!

A person who is always there and will never leave me, because He forever lives with me. He constantly dwells within me. He is all around me and will never forsake me.

My peace is a person… yet He is also a supernatural force.

My peace is so gentle … and yet He is also known to roar.

My peace is abundantly loving… and yet He challenges me each day.

My peace upholds me… even when I can no longer feel Him there.

My peace is Jesus Christ.

The tangible stillness that guides my life’s ship through the storm.

A place where He is fully in control even when everything within me feels like a storm.

An indescribable presence, so still, so restful, so easy. Where the heavy burdens I have been carrying are lifted. And His gentle yoke of unconditional love and undeserved grace is left in its place.

He is the ONE who has won my heart with the beauty of His unending Love.

He is my ultimate calm.

So many people misunderstand my Saviour. But it doesn’t mean that He is not there. He is always standing patiently, glimmering in the shadows of our lives. Knocking at the door of our hearts. Willing us to let Him in. Desiring us to allow His Light to radiate into our dark places and shine through our broken pieces into our hurting world.

So that we can experience the supernatural power of His peaceful presence. An unimaginable Love that takes you over as He enters in. Awakening you by the grace that He plants within.

In His peaceful presence there is a realignment of His Spirit and your soul. You find that you become restored back to who you were always meant to be. You discover the purpose for which you were created. You finally discover what it really means to truly be ‘me’.

In His presence the striving will cease as His supernatural rest takes over as He does His own work in you. His peace descends as you cease resisting who He made you and who you were designed to be.

I wonder – do you know that peace yet? Have you experienced its stillness?

Do you feel it now?

I feel that peace. The deep calm of knowing Him and Him fully knowing me. It emanates through and from His Spirit who came to live within me the moment I fully surrendered. The time that I was born again into His family. The occasion that I was made fully new.

He is my peace.
My love, my life, my all.

Do you desire to feel deep peace today? Has anxiety taken you over and you long for even just a taste of peace again? For normality to be restored? To discover the joys of how life used to be. To go away somewhere, to retreat back to your favourite places of beauty & joy. To return to a life that was more ordered and controlled, when your plans were not put on indefinite hold.

Well He is here for you – if you will call out His name.

His name is Jesus.

Call to Him today.

He is always waiting, always willing and always longing for your call.

Jesus said, “”I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.””

– John‬ ‭16:33‬ The Bible ‭‬

We will have trouble in this life. Our broken world is full of it. If we can avoid it today – it will somehow reach us tomorrow. But Jesus transcends the trouble in our world. And with your permission that presence of peace can enter into your own personal chaos.

You simply have to…
Let go.
Surrender,
And dare to let Him in.

You cannot earn peace. You cannot muster up enough positivity to win it as your reward. You can only surrender to Him and allow Him to do His deep work within you. Until peace begins to take control of all that you say and do.

I assure you – once you start to taste and experience the glorious fruit of His peaceful presence, you will be ruined for anything else.

Because peace is not a place. It is not an absence. It is not even an escape.

Peace is a person.

Peace is a presence.

His name is Jesus.

And you can experience Him now.

IF you will surrender and let Him in!

“Deep peace of the running wave to you.
Deep peace of the flowing air to you.
Deep peace of the quiet earth to you.
Deep peace of the shining stars to you.
Deep peace of the gentle night to you.
Moon and stars pour their healing light on you.
Deep peace of Christ,
of Christ the Light of the world to you.
Deep peace of Christ to you.”

– A Gaelic Blessing
Spinal CSF Leak, Suffering & Grief

Waves of Grief in Chronic Illness

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Yesterday was a hard day. A day where the horrible constant pain and nausea nagged and taunted me the whole day. A day where grief again came as waves that wouldn’t stop washing over me.

Reminders of loss, of restriction, of the shackles of chronic illness.

Grief doesn’t just come when people die. (Although that is one of the worst kinds.) Grief comes wherever there is loss in our lives of things that were important to us.

There is often a lot of things lost with chronic illness.

Grief brings an anxiety that attacks you. An inner pain that can take your breath away. A deep sense of loss and forced change. A feeling of being somewhat out of control. Not knowing what the future will look like. Unsure that you will always find the strength you need to hold on.

The grief is real – yet unwelcome.

Grief is the uninvited visitor who barges into your life, to brutally remind you of everything that has gone. You don’t want it there – you fight, resist it and want to chase those thoughts and feelings away.

Sometimes you can: You find a way to refocus. To remember all the good things still left to enjoy. But some days the battle rages: You spend all day exhaustingly trying to dodge and jump wave after wave…

Until in one moment – it catches you unawares – and crashes over you again. You want to scream, cry and shout out all your pain. All the heartache. The weariness of the constant battles. You want the world to know that you don’t want to be like this. You don’t want to live like this. This is not how it was meant to be. You don’t have the energy to keep facing these levels of pain and suffering.

But there is absolutely nothing you can do but try to flow with it. To try and wade through the turbulent waves. In the fight to find that deeper peace again.

Sometimes you just have to grieve. Sometimes you have to allow yourself to lament as David did in the Bible Psalms. Sometimes you must take a moment to face the reality of the struggle. To say how much it all hurts. To acknowledge how unfair it feels.

To speak the REALITY, that these days you perhaps rarely share.

I honestly get so tired sometimes of the relentless battles I have no choice but to fight.

“Confessing weakness is the doorway to hope. It marks the end of self-reliance and the beginning of letting grace do in you what you could never do for yourself.”

Paul David Tripp

Grief is such a painful word. It’s even more of a painful feeling.
It takes you over from the pit of your stomach. As you remember how things used to be. How you hoped they would remain. The person you thought you were and would be. The life you always had in mind.

Which no longer exists… Like it did before.

A significant part of my life died five years ago. My health was shattered after one fall. I have honestly forgotten what good health feels like. I don’t remember how it feels to have a body and brain that works normally. To not have this constant pressure and pain in my head and spine. It’s constant screaming for my attention. Pulling me to distraction.

I want to be present… Here with you in this moment… With others. Focusing fully on the things I need to do. Focusing fully on this time with you. But this illness, the never-ending pain keeps pulling at me. Taunting me. Shouting at me. Demanding my attention. Trying to take over my thoughts. The relentless noise in the background of everything I do.

Sometimes I just need to speak it out. To get it outside of my own mind.

To tell you how it feels. To let someone else struggling know that I go through it all too.

And in this moment I feel it with you. You are not alone. I am present with you in this distressing place. I am here with you in…

The grief. The pain. The shame. The constant distraction. The doubts that you will make it. The exhaustion of the fight.

But that is not enough is it? To acknowledge such a terrible thing and then to leave it there with no hope. With no way forward. Because that place is too hard to stay long term. That place leads to darker and more deadly places where despair takes hold until all life is squeezed out from you.

We can’t deny it. But we must find a way through it.

Otherwise we might drown.

“Occasionally weep deeply over the life you hoped would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have.”

John Piper

Some days the battle is harder. Some days it is a little easier.

But when those horrible waves of grief do come, I am learning to let them BE for a moment. To acknowledge them – to voice them. Denial never helps – it only builds then bursts you open one day to levels that are unbearable. So I must learn the patient endurance again as today I attempt to rest as much as I can, and wait for the waves to still a little more. Returning to a more steady place I can again find the strength again;

To re-frame. To refocus. To SEE with new eyes the beauty that is still here.

It’s in the facing and accepting of grief that we find a new way forward. A journey of many wrestlings where we MUST learn how to accept the things we cannot change, whilst having the wisdom and courage to change the things we can.

Neither living in denial nor getting pulled into the pit of despair.

Gratitude helps that. To see, remember and focus on all the wonder still around me. My loving husband, family, a beautiful home, food on the table, amazing friends. The opportunity to write, to see others, to encourage and teach different people through church, to make a small difference in someone else’s life. To remember all the things I can do amidst all the restrictions…

… To continue to love and to be loved.

To see beyond my own pain and allow it to produce a deeper sensitivity to others pain –physical, mental and emotional. To know that learning how to deal with my own personal battles – gives me new wisdom to help others deal with theirs. The goal that in overcoming each day – I can help someone else overcome too. To stay and fight to see the wonder still around us, the hope that can still be found.

I have to again remember that my life has purpose and meaning within all its restrictions and despite its debilitation.

This is not always as easy as it sounds. The theory is good, the practice can be so hard. Because when grief comes – it not only reminds you of what is lost, it also tries to steal everything you have left. It can paralyse you as it attacks your confidence, your peace, your mental stability, your ability to know you still have purpose and worth.

“Suffering is never abstract, theoretical, or impersonal. Suffering is real, tangible, personal, and specific.”

Paul David Tripp

Grief can pull us into itself – into ourselves.

It’s suffocating. Distressing. Disconcerting. Disconnecting.

But we have to both accept it – whilst also finding a way through it. We know we can’t stay here. Without it pulling us into dark places that are full of despair.

We have to choose to wrestle our way back into brighter places. Where we can see and be thankful for what we do have. Where hope for the future can return – despite what that actually looks like. A place where we can again see that our life matters, it has purpose and can lead to new adventures, to new places.

However, to embrace the new we must first let go of the old.

That is why we grieve.

It’s in the letting go.

It’s in the feelings of loss.

But it’s also in the letting go that we discover more freedom. In accepting what has now gone – we become more open to discovering a different way of life that is still worth living. It may not look how we imagined it. It will probably still be full of a multitude of challenges. It doesn’t mean the pain will all go.

But as we again let go of the reigns, as we stop trying to stay in control. End trying to compare our lives to an idealistic fantasy that doesn’t actually exist. Whilst we learn to accept that life can be full of things that seem to go wrong. We can also learn to ‘let go’ and discover a glorious deeper surrender in the here and now. Surrendering to a new way, a new plan and new purpose that is ordered by One who is greater than we are – if we will seek Him. A way forward in hope – even in midst of the brokenness of our world and our fragile humanity.

A way that is full of love and life. Despite the pain and restrictions.

But to embrace the new we must grieve and lay down the old. Otherwise we will never see the beauty in this season. We will never witness new birth coming from dead things. The new shoots of spring, of new life, coming from the death and desolation of the winter.

So sometimes we just have to let the waves of grief come. I have to simply allow them to break over me. And even though sometimes I may rawly feel their brutality. I hope that I can keep holding on through them to discover the beautiful horizons, that although perhaps currently hidden, still remain to be explored and discovered on their other side.

“I know it’s all you’ve got to just be strong. And it’s a fight just to keep it together, together. I know you think, that you are too far gone. But hope is never lost. Hope is never lost. Hold on, don’t let go. Just take, one step, closer. Put one foot in front of the other. You’ll, get through this. Just follow the light in the darkness.”

Jenn Johnson ‘You’re Gonna be OK‘

To explore how I find a deeper strength to face the reality of living in a broken world with a debilitating chronic illness please see “Suffering Into A Deeper Spiritual Awakening.”

To read more about my 5 year journey with a spinal csf leak please click on the SPINAL CSF LEAK heading above or read this post: Living with a Spinal CSF Leak.

For more posts since my ARACHNOIDITIS diagnosis please see the arachnoiditis menu above.

Spinal CSF Leak, Suffering & Grief

Five Years Ago: A Poetic Reflection of my Spinal CSF Leak Journey

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Five Years ago this week…

I fell from a small step ladder.
Five years ago this week – my life took a dramatically different turn.
Five years ago this week – I got sick and have never fully recovered.

Five whole years…

Of enduring
Of fighting
Of grieving
Of accepting

But also five whole years…

Of learning
Of growing
Of loving
Of living

One fall. One injury.

Changed so much.

My girls were just 7 & 10 the day I fell.
They were there watching me paint.
They saw it all happen.

The fall.

The getting up again.
The dusting myself down.
The continuing to paint.

The next 48 hours where their mum got more and more ill.
The constant medical, GP, A&E visits, followed by multiple hospital stays.
Seasons of me being stuck lying down flat for months on end.
Followed by the seasons (post epidural blood patches) of being upright all, or most of, the day.

They have seen it all!

The turmoil and struggle.
The wrestlings and pain.
Their mum so different.
Our lives forever changed.

Never to return to who she once was.

Lives dictated by multiple restrictions.
The never ending storm of tragic depictions.
We have had to learn how to ‘live here’ to ‘find life’ amidst all the challenges.
To find a way to live in, and through, the never-ending seasons of chaotic pain.

Sometimes life doesn’t look like we imagined it to…

We always believed I would get well!

In days…then weeks…then months…then years…

Surely I would get well again?
Surely I wasn’t such a bad case?
Surely ‘normality’ could and would be restored?
Surely the longed-for redemption would come?
Surely this, or that, treatment would work?
Surely time would bring the full healing that I need?

But ‘normality’ never came.
It remained elusive.
At times tantalisingly near.
But always on shifting horizons.
Never to fully appear.

The start of last year was another journey towards that goal.
Following a year of healing with a good trajectory. Feeling better, things improving.

Until that haunting plateau returned.

I again stubbornly kicked and pushed against it.
Determined – this time – to fully overcome.
As I tried to win the never ending bid for freedom…
I brutally whacked right into that figurative brick wall.
Running at full speed.
Determined to this time to make it fall.

It didn’t fall.

I did.

Shocked and dazed I crumpled into the mud – yet again…

Completely spent
Totally wrecked
Utterly broken

I dramatically relapsed in the Spring – physically and mentally.
I shouted and screamed internally – again.
I fell into the pitch blackness of total despair.
And I grieved like never before.

‘How am I supposed to keep living like this?
I cannot do this any more!’

Four and a half years of pain and struggle had taken their toll.
Four and a half years of fighting to be heard, and get well, had left its open wounds.

I had nothing left to fight with.

It was tough to come back from that figurative fall.

But we did find a way again.
In God we discovered a resilience that can only be found in Him.
His Words provided a way forward – an indescribable peace within.

There is always a way forward if we don’t give in.
There is always beauty to be found – even amongst the mess.
Always a light shining somewhere – even in dark places.
Always a deeper love to be discovered – even amidst intense pain.

IF we can keep following the light.
IF we can keep focusing on its radiating beauty.
IF we can allow ourselves to be guided into new horizons.

New mindsets.
Hidden joys.
Intense loves.

IF we choose to never give up…

Only then…

Can we find a new life.
Can we find a new depth of love.
Can we find new purpose.
Can we find pathways to new adventures.

If we will simply stay the course.

Who knows what tomorrow might bring?
Five years ago this week…

I fell off a small step ladder whilst painting.
Five years ago this week I tasted of the devastating debilitation of a spinal CSF leak.

I wouldn’t want to relive these past five years.
I wouldn’t want anyone else to experience those depths of struggle.
So I will fight and keep speaking out until our stories are heard.

Until change comes.

But I also know…

That I wouldn’t want to go back to who I was before that week either.
I am changed forever.
But the change is not all bad.

There has been something deeply beautiful about this impossible journey.

A profound way where excruciating pain teaches you what ‘living’ truly means.
A hard and winding path that brought many wonderful and inspiring people – whom I never would have known.
A wandering that has at times felt aimless – but has also led to glorious discoveries.
A stormy voyage that has shown me stunning new spiritual landscapes and revelations previously uncovered.

Five years ago this week I fell from a ladder.
Five years ago this week I got a life-destroying spinal fluid leak.
Five years have passed of leaking (& at times somewhat recovering).

But never getting fully well.

But regardless of the pain, the suffering, the seeming wrecking of so many many dreams.

I have lived.
I have loved.
I have learnt.
I have grown.
I have spoken out.
I have used my writing.

In the hope that one day things will be different.
Perhaps other families will be saved our pain.
Maybe one day someone’s similar journey will be easier.

Simply because,

I ran the relentless marathon first.
Refused to give up.
And told my never-ending story – despite all of it’s indescribable pain.

“I abandon my addiction to the certainty of life
And my need to know everything
This illusion cannot speak, it cannot walk with me at night
As I taste life’s fragility…
I can’t pretend to know
The beginning from the end
But there’s beauty in the life that’s given
We may bless or we may curse
Every twist and every turn
Will we learn to know the joy of living?”

(Looking For a Saviour – United Pursuits)

UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.

Here is my new summary video of my whole medical journey as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Please see this  May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

Spinal CSF Leak, Suffering & Grief

Dear Doctor, From Your Naked Patient

10 Comments

Dear Doctor,

Perhaps we once met, perhaps we never will.

Regardless of which it is – today I just want us to try and understand one another better. Because if we can TRY to understand one another more, then perhaps we can work together to help your patients find more holistic healing and hopefully make your job a little easier too.

I decided to try and connect with your heart today, because I know that under all those important professional masks, doctor degrees, awards, uniforms, stethoscopes, sometimes fancy clothes and endless medical guidelines….

You are simply human like me.

Today, you might be my doctor and I might be your patient.

But perhaps yesterday, today or tomorrow we will equally face the same or similar challenges in our lives. The kind of personal difficulties and traumas every human faces at times. The types of trials and wrestlings that are simply common to our humanity, and a normal part of our broken world.

Maybe tomorrow you may even face the horrible illness I am facing today. Or perhaps one day you will find that one of your loved ones is in my ‘patient shoes’ – and someone else is in your own ‘doctor shoes’.

So please could we connect as equals – as human to human.

Rather than my inferior condition to your superior position. Or my entitled demanding to your service providing.

Please would you take a moment to humbly listen, as I attempt to open my heart to you today?

First, I need you to know some of my own story for you to understand me better. To know that I have been very unwell for nearly five years now. In January 2015 I fell off a small step ladder and that one moment changed my whole life. And from that moment I was catapulted into a life of constantly being someone’s patient.

… Maybe being your patient.

During that time I have met some wonderful doctors who were able to connect with me, listen, and who tried to help me as much as they could. I appreciate them more than they will ever know.

They were bright lights in immensely dark places.

But most of the time I have met doctors who didn’t really understand. And some who didn’t seem to even want to try. I met many doctors who treated me as another inconvenience in their very busy day. Another form to fill and box to tick. The nameless, faceless puzzle to try and solve that day.

You see dear doctor…

I have a condition that you may not know much about. And even if you think you do know a lot about it, if you spent a couple of hours in my home listening to me and my family you would probably find that you don’t know as much as you think you do about my complex case. Even many ‘top neurology specialists’ don’t truly understand my condition – even though many of them think they do.

And because of that, some of you have unknowingly added to my pain, giving me wound after wound that I am still healing from today.

You see, for the past five years I have been battling a spinal CSF leak. Perhaps you have heard a bit about them. Patients can get them after lumbar punctures, epidural anaesthetic injections or spinal surgery. Recently more doctors are realising that spinal fluid leaks resulting from these procedures are probably more common than previously recognised. The truth about their devastation seems, in the past, to have been hidden – mainly because many doctors only knew of the classic acute PDPH (post dural puncture headache) symptoms; they didn’t know that you can be leaking spinal fluid and not be stuck flat 24/7. It’s possible that you can be upright a lot of the day, but still be very, very ill. Experiencing all sorts of other horrible, debilitating, distressing, rarely recognised and widely misunderstood neurological symptoms.

I acquired my leak from that step ladder fall in January 2015. More of that original story is here if you want to learn. All my scans – until recently – failed to show IH (intracranial hypotension) or evidence of a leak in my spine.

And yet….

Every single day since that ladder fall I have felt exceedingly unwell. I have not had one fully pain free day. I have not experienced a single day when my mind was clear and my brain worked like it used to.

I need you to know – dear doctor – that every day is a struggle for me. I have fluctuated between being bed ridden for months on end, to months of being upright all day.

And everything in between that as well.

But never well. Never normal. Never knowing the health I used to know.

I could never fully explain to you how impossible it has sometimes felt to live like this.

Recently – after more than four years – my UK NHS specialist team think they have located my CSF Leak in my cervical spine, a ventral leak, hidden at the back my dura on new MRIs. We are currently waiting for new scans to be read and reported to confirm and categorise the leak and work out a better way forward.

I was diagnosed with a suspected spinal CSF leak two months after my original fall. For a while they thought it was post-concussion syndrome – until I was finally admitted to hospital after my third trip to A&E. An understanding neurologist finally picked up on the fact my symptoms only went away lying down. Since then I have had 8 separate MRIs, a radionuclide cisternogram and a CT myelogram of my brain and spine. Until recently, they ALL failed to show any evidence of a spinal CSF leak at all.

Can you imagine how hard it is to be so very, very ill, but lack the vital evidence that definitively PROVES to you that I am leaking CSF from my spine?

I know I am as ill, and sometimes even much worse, than some of those who have the scan evidence you want to see. And yet I know that some of you still doubt me, and I know that some of you still don’t think it’s all quite true.

Even though…

  • Research shows that at least 25% of spinal CSF leak patients don’t show classic signs on their brain MRI. *
  • Medical papers show that around 50% of patients don’t show the leak on spinal MRIs.*

And yet I still often feel that I have to ‘prove’ to you how ill I really am.

That my lack of evidence is my own curse.

My own fault maybe?

I have been there with you. Lying flat in a hospital bed as you have towered over me, asking question after question, requiring me to prove myself to you. Feeling like I am a criminal standing in your ‘doctors court’.

With you as the ‘appointed judge’ over my medical destiny.

Do you know how deeply you have wounded me?

To be unbelievably and traumatically ill with a ‘apparently rare’ brain condition, and then find I also have to summon up energy (I don’t have) to ‘fight my case’ in your ‘doctors court’.

Challenging me to PROVE how ill I really am.

Do you know what damage that has done to me?

You probably have no idea how much it has affected me these past five years. How much it wears me down. How much it has infected my mental and emotional stability. How much shame I have had to carry.

Simply because in your busy, overwhelming, important – and often under-valued – job, some of you seem to have forgotten that your patients are simply human.

Just like you!

We share a fragile humanity.

I know that to some of you we are simply different diagnoses that come and go. Some more complex than others. Some that don’t quite fit the ‘diagnosis box’ you are trying to force us into. Simply ‘medical cases’ – charts, scans and notes – that walk into your busy world one day…

… never to be seen again.

Do you realise how much it messes with our heads?

The reason I am writing to you today is in the hope that somehow, I can re-connect with your human heart. Maybe – just maybe – we could get better at understanding one another again. So that we don’t have to end up with all of these painful misunderstandings and confrontations, which can sap your energy just as much as mine.

I know as patients we also need to realise that you are only human too.

That you are not ‘miraculous supernatural healers’ that can defy the laws of medicine, physics and nature. You are simply humans, trying your best to help other sick humans heal up and get well. Many of you wish you could do more for us – not less. You are bound up by the ‘system’ that controls you, by ‘modern medicine’ with all its exhausting bureaucracy, targets and restrictions. We know that there are those of you with equally broken hearts who wish you could offer us more than you do.

I am sorry that we sometimes forget that you are human as well. When we get lost in our own vulnerability, shame, pain and confusion and lash out at, and blame, you unfairly. I am sorry when we also fail to treat you with the kindness, compassion and gratitude that you deserve, as you work with systems that often overwhelm you and bring you crashing to your own exhausted knees.

But today, I can only speak from what I know. I can only try and share from the heart of a very broken patient, who knows that things really do need to change.

You are all overworked and overwhelmed in many ways. And yet some of you seem to be more connected to your own humanity than others. Some of you seem to know how to connect with your patients heart to heart. Some of you achieve this despite all the many challenges of your role.

So I want to say thank you. I know that you are the ones listening to me more openly today.

Recently I have been thinking more deeply about what ‘being a patient’ can feel like for us and how to try and help you understand more – dear doctor. Especially for those of us stuck lying completely flat in a hospital bed due to a spinal CSF leak.

But also as A VOICE for your many other patients as I try to explain what it feels like for us to enter your normal vocational world.

You see, for you, the hospital is your workplace. For us, it’s often an immensely distressing place.

We are not normally there by choice, but because we know that there is no other way to get well than to come to you. So when we enter your ‘hospital work place’, we often feel so vulnerable, so confused, so distressed, so exposed, and often in so much pain.

One way to describe it to you is that we feel like we are metaphorically simply naked and exposed for you all to see.

You may not have ever been a deeply vulnerable and distressed patient yourself – so we know it’s hard for you to fully empathise and understand – but if you want to try and understand us better when you come to see us…

Can you take a moment to imagine and picture what it would feel like if it were you lying on that hospital bed, fully naked – so exposed, vulnerable and ashamed – with absolutely nothing to cover you up?

Our own masks, worldly titles, fancy clothes, make up, hairstyles and badges of honour have ALL been snatched or stolen away. So we are subsequently feeling so cold, so messy, so vulnerable, so distressed, so confused and so naked – whilst you are simply getting on with your daily grind in your normal place of work.

Please be kind to us. Please be patient with us. Please listen carefully to us. Please TRY to understand us.

Don’t stand at the foot of the bed and tower over your patient – she feels small already – take a minute, sit down, listen…Try to understand. Realise you will never understand. Try anyway.”

– C. Sebastian*

Dear doctor, we feel small already… please don’t make us feel even smaller.

In our smallness you can often appear so big, so important and so intimidating. You are covered in all your doctor masks, doctor clothes, doctors badges and medals of honour, and talk with your important-sounding ‘doctor speak’.

Sometimes we don’t even understand what you are saying.

Because you are not talking to other doctors; you are talking to your naked patient who already feels so very small and so very stupid lying down in that hospital bed.

Please listen carefully to us before you attack and accuse us of not feeling as ill as we say. Please open your minds to the fact that just because we don’t fit your boxes, it doesn’t mean we are not truly very, very sick.

You are meant to be our healers – not our accusers.

Dear doctor, you should know that after leaving your hospital or doctors office and perhaps never seeing you again, over the past five years I have experienced two intensely excruciating complete mental health collapses. I have also found myself close to those places again and again.

And in those places – normally when I completely relapse physically, I stop sleeping and have no energy to fight anymore – in those places, all of my traumatic memories of encounters with intimidating and insensitive doctors return to me. I picture you as scary ‘doctor-judges in the medical court’, and I don’t have the energy to try and ‘prove myself’ to you again, and face getting my case thrown out with the lack of suitable evidence.

So I want to just give up.

Dear doctor, did you know that in those dark and distressing places my broken and exhausted mind decides that death might be my only way out. The only escape from the constant battles. The only way to end the never-ending fight. The only way to stop having to defend and prove myself again and again to another intimidating ‘doctor-judge.’

Did you know that your insensitive words and actions one day could indirectly contribute to my death?

Do you realise how serious that is?

You see, when my impossible medical journey pushes me to places beyond what I can endure, when my mind packs in and my body breaks down due to the immense stress and strain of daily battling a debilitating and distressing misunderstood neurological illness year after year…

I end up feeling more broken, more vulnerable, more distressed, more naked and smaller and smaller than ever before.

I feel like a worthless and insignificant judged ‘chronically-ill’ nobody. Who just cannot get well. However hard I try.

Dear doctor, I then need you to know that I need you to see me as…
Just another naked and vulnerable human patient…

…. looking for someone to help cover me up. Someone who can put a blanket of compassion, kindness and hope over me so that I won’t feel so very very cold, ashamed and completely overwhelmed from the fight.

You see…

I am your naked patient.

So please understand that in my nakedness, all I can see is all your importance, all your knowledge, all your intimidation, all your doubts about me and my case, all your intelligence and words I don’t always understand.

So you scare me!!!

I can no longer see your equal humanity; I can only see my naked inferiority beside your beautifully adorned superiority.

So dear doctor, please be gentle with me. I am not as strong as you think. My heart has been broken and wounded again and again. Some days I just think I will sink.

All I see is my broken humanity. All I see is my naked vulnerability.

So dear doctor, today I wanted to connect with your heart. I wanted to try and reach you, human to human.

As your equal.

To please ask you…

When I feel that naked, the best way to help me is to remember that underneath all of your adorned and celebrated doctor-robes, you are just a naked human too. You may not feel it so much today… or even tomorrow. You may not really ever understand what I am actually trying to say.

But please try and imagine yourself as that naked patient, lying in that hospital bed. And think about how you can move a little closer to our inflicted lowered level and status; to sit down, to listen, to try and understand…

Whilst realising you can never fully understand.

But please do TRY anyway.

Because one day…

That naked patient…

Might be you!

And then you will want to meet a kind and gentle doctor, who can also relate and connect to your vulnerable and exposed naked humanity.

And I hope that they will try to bring you more holistic healing….
Rather than inflicting wound after wound after wound... that can sometimes be even harder to heal from than the original condition over which you met.

Sent, with heartfelt tears, gratitude and deep respect for your willingness to listen and learn,

From,

Your naked patient

“Don’t stand at the foot of the bed and tower over your patient – she feels small already – take a minute, sit down, listen…Try to understand. Realise you will never understand. Try anyway.” – C. Sebastian

*Quote from this beautifully insightful TED talk on encouraging ‘Narrative Humility’ in the medical profession.
Narrative Humility: Sayantani DasGupta at TEDxSLC youtu.be/gZ3ucjmcZwY

UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.

Here is my new summary video of my whole medical journey as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

*Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

*Please also see this other in depth 2018 medical paper about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate disgnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.

Identity, Mental Health, Perspective

What is My Purpose? Do Small things with Great Love

3 Comments

“Do ordinary things with extraordinary love.”

Mother Teresa

A few months ago, I was again immersed in the intense and dark storm of a traumatic spinal CSF leak symptom relapse – which also triggered the major mental health crisis I wrote about here. Part of my turmoil included the sense of feeling completely worthless.

Being perpetually stuck in bed with very distressing neurological symptoms often means you feel like your life has so little worth, value or purpose. Especially when you see most other people around you getting on with their seemingly important, full and valuable lives.

Feeling ‘purposeless’ amidst suffering and chronic pain really negatively impacts your mental health. Because when you feel like your life has no purpose, you simply feel burdensome to those having to care for you, and to the world in general.

In that crushing darkness I was immersed in, I just couldn’t see how my life could bless and help others. I just felt like I was, and would always be, a negative influence and drain on others. I even felt like deleting this whole blog, and my all of my public writing, because I decided that stories without happy endings are just depressing. If I cannot offer hope to those suffering then my writing may just discourage those already unwell and spread negativity rather than positivity. I thought to myself: what’s the point of me telling my sad story when the world is just full of sad stories?

In the end, I compromised and managed to just privatise this blog for a few weeks – until my perspective began to get a bit more healthy and balanced again.

However, as time went on – and the sun slowly began to break through the dark clouds – I realised that my mind had again got lost in the LIE often peddled in this world that ….

What you DO is far more important than who you ARE!

The lie that subtly tells us each day that if I can’t actually DO anything then my life is surely worthless?! I am just a chronically (and at times mentally ill) ‘insignificant nobody’ who is struggling to find the energy to live and breath, let alone have the energy or capacity to make a difference in the lives of my immediate loved ones – or the world in general.

“Experience is not what happens to you. It is what you do with what happens to you. Don’t waste your pain; use it to help others.”

Rick Warren, The Purpose Driven Life

Why do we so often fall for that ageless deception – that we only truly ARE what we DO?!

“What do you do?” everyone asks you when you first meet. “What do you do?” the doctors ask when they first see you – as if knowing such things means that they can now interpret your ‘medical story’ through the bias of what title the world has given you.

Those few ‘what do you do’ words often unknowingly heap shame on those of us in Western society now unable to DO as we used to.

The fact that we don’t, or can no longer, wear societies ‘badges of honour’ (its job and career titles) – perhaps because of immensely difficult seasons of debilitating illness or disability or other challenging seasons in our life – suddenly means that we become insignificant second rate citizens of the world.

When I get lost in such lies, it cripples me. Shame consumes me. I lose track of my identity. I feel completely lost and not sure where to anchor myself so as to move forward.

But as my perspective begins to improve one of the first things I begin to SEE is that I have again got deceived into believing a lie.

Slowly I can SEE again that I instead need to connect with the deeper truth of this universe, that is…

I am not what I DO!

I am still Becky Hill – whether I can be busy DOing a certain job or task, or if I can only lie in bed and look for ways to find purpose in the midst of all my pain and restrictions.

It was at that time and in that place of deep wrestling that one day I was sharing what I like to describe as a ‘Psalms type prayer of lament’ to God. I was crying out to Him, overwhelmed by the feeling that I didn’t have a purpose anymore. I was just so restricted by my physical condition that I was questioning what the point of me being alive was. If my life is simply about existing and enduring the pain, then is it really worth living??

And in that moment I felt God reply to me so clearly through the peaceful gentle whisper of His Spirit to mine…

“Precious child – your purpose is to daily ask yourself, “who can I show LOVE to today?”

It immediately EXPLODED in my heart!

It was so simple – yet the revelation so profound…

God wanted me to get the focus off of me and ask Him for creative ideas to show love to others – DESPITE my pain and limitations. He was telling me that even though, at that point, I was stuck in bed most of the day … I could still choose to love others from that place.

Those words from God that day resonated with and reminded me more deeply of the truth I already knew and lived by – that LOVE is only love when it is given and offered sacrificially. In the same way Jesus gave His life to love mankind by dying for our brokenness, we also need to be inspired by his example – by daily looking for ways to love others sacrificially too.

However, the key thing God continued to show me in that moment which has powerfully stayed with me ever since… is that the acts of love didn’t have to be BIG things. I just had to love as much as I could through the small things I could do. It was at this point the sign in the photo that we have hanging in our hall became a deeper revelation which has become my fundamental purpose for living…

DO SMALL THINGS WITH GREAT LOVE!

It’s so very simple and yet so deeply profound.

DO ORDINARY THINGS WITH EXTRAORDINARY LOVE!

It doesn’t matter how small or how ordinary what you have to offer is.

What matters is the amount of love you offer it with.

So …

It doesn’t actually really matter how BIG or extraordinary your job title is! What matters is how much love you do all the small and ordinary things in that job and the rest of your life with.

In that way the standard is equalised for all.

Our purpose is always the same.

No one has a more significant purpose than others.

So if today I can only hang some washing on the line, send a couple of empathetic messages to other people struggling and order some shopping for my family online – I can do it all with as much love as I can. I can serve others with a sacrificial heart. Which means the pain invested in the small things causes the love shown to be even greater.

So those words “who can I show love to today” have become the habitual daily question of my heart. Those few words – “do small things with great love” – have helped me immensely in walking through what seemed like an impossible time I couldn’t endure.

When I would wake up in the morning on those days and the dark reality of the struggle ahead would hit me like a ton of bricks, I would try to accept where I was – grieve my limitations – and then change my focus to ask God – ‘please show me who I can love with small acts of love and kindness today.’ In that place I tried to be mindful of others who were finding life challenging and think of how I could encourage them. I would look for very small jobs that I could do at home and try and pour my love for my family out through them. If I was shopping online – or later could go to the shops – I would try and think of who I could buy a special gift or card for.

And slowly…but surely…that sense of PURPOSE – EVEN AMIDST PAIN – was restored to me.

Because I again discovered that being alive meant that someone else could be loved, served, encouraged and blessed today.

It took the focus off me and my problems…

And shifted my gaze and contemplation onto His sacrificial LOVE flowing through me.

And the more I loved.

The more I felt His love.

So the more love I then had to give.

“The greatest thing about helping other people is for the moment you forget about yourself.”

Matthew Barnett

I again discovered that the giving and receiving of true love is probably one of the best medicines to help sooth the pain. It is certainly the highest and most significant calling of our lives.

So today I decided to share my story with you again – to tell you with great love to never forget…

That despite your chronic pain, despite all of the debilitation, despite your current disabilities and limitations, despite all of the restrictions you seem to be facing…

There is still a much greater purpose for you.

Please don’t lose sight of that like I did. The truth is – there is still so much to live for. There are things that only you can do. There are words and tasks that only you will be able to see need doing, or saying, that may be able to connect with and encourage someone else really struggling.

So choose to love daily.

Choose love as the highest purpose of your life.

And whoever you are – whatever worldly title you do or don’t have – whether you feel important or insignificant – try to simply do…

Small things with great love.

That way, the world will shine a little bit brighter because you are still in it. Which is so important to both us, and others, who seem to be constantly stuck in a cycle of – at times – overwhelming darkness, brokenness and pain.

As I write these words today and try to infuse them with as much love as I can, I hope that you will today truly SEE how extraordinary you can be – IF you will just do and say ordinary things with extraordinary love.

Whilst knowing how much greater that love is – when it is given with the deep sacrifice of your ongoing pain.

“I was broken so that I may understand the broken, so that I may reach out to the hurting, and comfort the wounded. I have the capacity to bring hope and love and healing. A once fractured mirror finding new purpose, because I am no longer reflecting myself, I’m reflecting Him. This is my reason for living. This is why I was created.”

Sam Re

To read more about my recent mental health crisis please try this post; A Window into a Suicidal Mind  To read more about my beginning to understand how crippling shame had become in my life please see; ‘The Shame of Chronic Illness and Pain.’ For an article on a similar theme to this one please try: Is Busyness a Choice?

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Mental Health, Perspective

A Window into a Suicidal Mind

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“I remember the wild agony of no way out and how the stars looked, endless and forever, and your mind can feel like it’s burning up at all the edges and there’s never going to be any way to stop the flame.”

Ann Voskamp

Only those who have experienced the trauma of a suicidal mind can truly understand how agonisingly dangerous it is.

We usually do the upmost in our lives to avoid things that might kill or harm us. But when it is your mind trying to kill and harm itself – it can feel impossible to get away from. It takes you hostage, binding you up with all its lies and accusations, torturing you inside your own head, home and life.

Refusing to let you go.

If only I could explain to you what it feels like…

I recently read the beautiful article on suicide that the above quote is from. And straight away I connected with the author whom I instantly knew understood.

You see I never used to understand.

I used to assume that I would never think that way. That life couldn’t get that bad for me. That I couldn’t be that selfish. I assumed that my ‘superior’ coping mechanisms could surely carry me through any storm that came my way.

Until life took me through seasons when I truly felt …. “the wild agony of no way out…”

At the end of April this year I dramatically relapsed in my spinal CSF leak and arachnoiditis symptoms…AGAIN!! After eighteen months of clear improvement since my last epidural blood patch. Everything came crashing down again physically and mentally.

And I found I had absolutely NOTHING left to fight with.

I had completely burnt myself out physically, mentally, emotionally and spiritually from fighting this horrible condition and all the misunderstanding’s surrounding it – for so long.

I ended up stuck in bed nearly all – day and night – in almost perpetual intense, agonising pain. Everything simply exploded symptom wise and it felt like I was getting every type of headache and nerve pain in my spine you can get on top of the ‘low pressure’ issues. It was non-stop, non-positional pain, and made worse by the fact I was hardly sleeping at all.

I am only now beginning to feel more ready to talk about what happened back then more openly. Rather than just wanting to hide from the world and not speak up.

It’s only crippling shame that tries to keep me silent.

But as I get increasingly well, I know that part of my healing and restoration comes in being able to talk more openly about how bad things were. I know that the only way to deal with shame is to speak it out. So as to process my own journey and also to connect with others’ suffering and struggling, as well as to help others to understand more.

So here’s some more of the brutal and raw truth about the traumatic wrestlings of a suicidal mind. At the time, I wrote some poetry in my iPhone notes. I guess to try and process my thoughts and explain to others how it felt. I did show these to my husband at the time which he appreciated – even though they were often painful for him to read.

This Pain in My Head

I am going mad
This pain in my head
Persists and won’t go away
It’s killing me slowly
Polluting my life
Stealing everything away

What do you do When you are Drowning?

I am drowning – can you see?
My head keeps sinking below the surface.
My legs furiously attempting to keep my head above the waves.
I have no strength left to fight.
My legs are growing so tired.
My mind just won’t stop whirring.
The pain won’t let me go.

I am suffocating – can’t you see?
Where life is being squeezed out of me.
My energy leaving me, my endurance gone.
My life just a shadow of what it once was.

I am in inner & outer torment – can you see?
The pain and debilitation slowly taking over all I am.
Like gangrene it eats away at me.
Stealing my life, my strength, my hope

I love you all so much – can you see?
I am devastated by just what may be.
To think of your tears, your cries, your heartbreak and pain.
To think of destruction eating away at your hearts.
To think of the backlash and the battle.
To think of all the awful desolation left behind.

How could I?
How can I?

What am I supposed to do?
Do I keep existing or allow the waves to take me where they will.

So the battle rages and I sink yet deeper still into the darkness.
The pit of despair – a place that won’t let you go.
Destruction all around me.
Devastation following.
Despair keeps on calling my name.

I am stuck in the pain and anguish of living here.
Trying to love here…
Trying to suffer well…
Trying to hold on…
Trying to clutch on to life…
Trying to not let go…

But losing…
I am losing…
I am losing…

I don’t want to be lost
But devastation is calling my name.

The Torment of Pain

Pain torments you it pulls, pushes & wrestles with your mind
Persistent pain consumes you until nothing else is left
It eats you alive leaving your flesh exposed
Infection after infection ravages your thinking
Mind constantly infected
Tormented
Trying to hold on
Trying
Trying
Trying to hold on
Gasping
Reaching
Clutching
By my finger nails
Trying to hold on

How Long am I Supposed to Endure?

How long am I supposed to endure?
She asked, writhing around in pain
How long do I need to exist in this for
She asked, living as if death was life

They tried to understand
but still couldn’t see
the pain
that never went away.
The torture of not knowing how long to endure
Was stealing her whole life away

The problem was
she could no longer see
a future any better than this
She tried and she tried to hold on for love
But the pain was pulling her to defeat

Many would question the size of her love
The fact she could not endure or remain
But that is because they never lived in her body
And never kept on feeling her pain

Somehow reading them as separate poems doesn’t quite do justice to the intensity of the trauma that takes over your mind when you are backed into the ‘corner of dark shadows’ that is suicidal ideation.

Your mind is completely out of control.

You can no longer think rationally. It’s just a massive ball of dark, oppressive and negative thoughts crippling your perspective and adding to your intense internal and external agony.

I still felt so much love and love was actually my only anchor and light. But love was often even painful to feel, because you think that if you really loved others – that much – you should be able to endure and remain.

Right?

But you don’t have any energy to remain anymore.

It’s relentless.

Completely overwhelming.

All consuming.

Utterly unbearable.

And as dark as dark can be.

….And I was hardly sleeping at all. So there was no relief.

That’s why it’s called ‘mental illness’ – because you are extremely unwell.

And you just can’t ‘snap out of it’. Or just ‘think positive thoughts’. Or ‘reign in your thoughts’. Or simply ‘change your perspective’.

You no longer have that ability.

Your mind is no longer your own.

Without the love, compassion, support and care of my amazing husband, family, church family, friends and doctors, I am not sure I would have made it through.

It still scares me to know first hand what a vulnerable and dangerously over stretched mind can end up like.

But I do know talking openly about it shows how far I have come since then. To know that I was simply very very sick – both physically and mentally. It breaks my heart to know that others are facing this same battle – in similar and very different ways – each and every day.

Unless we can try to listen and understand more what goes on the the mind of someone feeling suicidal, we won’t be able to help them overcome the immense stigma, shame, misunderstandings and trauma of that experience. We need to know how to best try and help ourselves when we find ourselves there. As well as helping those stuck in the oppressive prison of a mind on the edge of suicide.

So that’s why I am opening up my own immensely humbling experience again. To let another struggling soul know today that you are not alone. I have been there and I want you to know…

It can get better again.

I know you can’t see it – yet.

I couldn’t either.

I only felt the ‘agony of no way out.’

But one day the sun did again begin to break through the clouds.
And I began to walk out.

Albeit bruised, battered, burned, startled and scared from the fight. But I made it through again. So please just keep putting one foot in front of the other.

Just hold on a little bit longer.

Allow someone else to walk through it with you.

And then get strong enough to share your story. Because it might help to reach and save another struggling soul too.

“I wanted the brave to speak up, to speak the Truth and Love:
Shame is a bully and Grace is a shield.  You are safe here.
To write it on walls and on arms and right across wounds:
“No Shame.
No Fear.
No Hiding.
Always safe for the suffering here...”
If we only knew what fire every person is facing — there isn’t one person we wouldn’t help fight their fire with the heat of a greater love.”

Ann Voskamp

To read more about my first mental health crisis please try this post; ‘Breaking Through the Darkness .’ To read more about my beginning to understand how crippling shame had become in my life please see; ‘The Shame of Chronic Illness and Pain.’

UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Spinal CSF Leak

Rising Again: A Year Of Spinal CSF Leak Improvement

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UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. Despite improving so much the year I wrote this – I wasn’t fixed. To read more about the new diagnosis please see this link.

“Time is not really spent. Instead, it is invested in a future we cannot see.” – Alicia Britt Chloe

When I read this quote recently in Alicia’s book ‘Anonymous’ it resonated with my perspective on life. Our time on this earth should not simply be ‘spent’ and should certainly not be ‘wasted’. Instead, all of our time is an investment for a future we cannot yet see – whether it’s intentional ‘learning or doing’, time invested in family and relationships, or facing a set of circumstances which force us to use our time in a new or unforeseen way.

If we can see like this, then we can know that nothing needs to be wasted. Everywhere our life takes us – both the good and bad – is an opportunity to learn, grow and invest into who we are becoming. It’s also an investment into who those we parent, lead and influence are becoming.

All life’s circumstances are opportunities to invest in the future – whether it’s ours, or others around us.

That’s how I’ve had to see the last four years of my life. Most of the first three were spent battling a debilitating spinal CSF leak, and the last has been all about investing in my recovery. Which has again required great patience, raw resilience and immense endurance.

The pathway of recovery, after a long term spinal fluid leak, is often a long, arduous and immensely slow process – even after more successful treatment.

The wonderful news is that – a year on from my seemingly successful 4th blind lumbar (40ml) epidural blood patch (EBP) – I am doing comparatively well. I have been upright all day every day since mid December 2017 (some days recently that is from 4am – 11pm!! If I happen to wake up early and have to get up due to ‘lying down’ headaches).

I can walk for miles, happily drive locally, get a lot done at home and look after my children (now 11 & 13). I can cook & bake for our family and others, spend quality time with people, go on holiday, and invest increasing time in my life-calling of pastoring and helping hurting people, in and through our local church. This is currently mainly through a lot of one-to-one mentoring and personal development time with others, as well as teaching in small group settings. I also do bits of admin for our church. Thankfully this is all flexible and I can do what I can, when I can, without any added pressures.

I have so very much to be abundantly grateful for. Last year I was acutely unwell and utterly debilitated – initially by the spinal fluid leak, then subsequently by severe post-treatment rebound high pressure symptoms. For four months over the summer of 2017 I had to lie down flat nearly all day, every day, and could only manage an exhausting 10-30mins upright at a time. Then after my EBP I just had a pretty much constant debilitating non-positional headache – amidst many other symptoms (as I talk about in this post) – for months. It is hard to explain how extremely unwell you are with both those conditions, and how confusing it is to work out which is which after treatment.

They are both truly awful to endure!

The road to full healing, even after successful treatment, is not an easy one at all. After a while, you can see that you are making some progress – albeit slow – in moving up the mountainside from the darkness of the valley below. But even the mountain climb of recovery is utterly exhausting in so many ways. It continues to take so much endurance, patience and resilience to scale the never ending rocky slopes.

But I am getting there….

In the light of how ill I was for so long – I am doing exceedingly well! I haven’t been this well since my accident in January 2015. In the light of how healthy and busy I was before my accident – and the onset of the leak – I am still not fully well. But I’m increasingly heading in the right direction.

How ‘well’ I am now is all a matter of perspective. I have to keep focusing on the wonder of how far I have come and the fact that I can easily be upright all day, which is a small miracle to me. So I must embrace all I can do – which is comparatively a lot – and not resent or get frustrated with what I can’t!

The slowness of my recovery can certainly feel frustrating at times – to say the least. Who doesn’t want to get back to full health and be able to embrace more of the life they once knew? And yet I’ve begun to learn and see more of the wisdom that can be found in the slowness. It’s not just my body that needs to heal physically – I (and my whole family) have needed to heal holistically, in so many different areas.

Having lived with a chronic debilitating neurological illness for years, and then experiencing the slow process of holistic recovery, I believe in some ways the whole journey through illness, healing and recovery can be viewed in a similar way to grief. It’s a journey, a passage, we walk through. It’s not something we experience one day, then ‘get over’ it the next. It lives with us as we attempt to move forward with our life. We have to wholeheartedly face, embrace, and walk through what we discover on the journey of sickness and healing – whether traumatic, painful or beautiful. We must give it the time and attention needed to move ‘through’ it, as well as we can, and find more lasting healing in every way.

My mind, emotions, memories, and soul need healing just as much as my physical body. They have needed to find increasing restoration, fresh confidence and new freedom.

You can’t ‘rush’ holistic healing!

It’s a process of working through complex and traumatic memories, emotions and thoughts. Unless you’ve walked the spinal CSF leak road, or a similar long term debilitating illness, you may not understand the trauma involved at every stage. Simply the daily holistic trauma of living with the illness itself is enough. When ‘leaking’, simply being ‘upright’ is often utterly traumatic for our bodies, brains and minds. Then add in the trauma of trying to seek medical help and support for a condition that very few doctors really understand (IF you can get diagnosed and ‘believed’ – that is). And add to that the mental and emotional trauma of being so debilitated and unable to function, anything like normally, in the short and long term. With this combination you can see that there is a lot to work through – as I write about in one of my most widely read posts, Living With a Spinal CSF Leak.

Sometimes it’s not until you start getting well that you actually realise how exceedingly unwell you truly were for so long. This is traumatic in its own way. The fear of going back there again can be overwhelmingly crippling – especially in light of how long recovery takes. This isn’t helped when, like in my own case, multiple major relapses have been your very real past experience. Moving on from the fear of relapsing again is so very difficult. True freedom from this fear can only come slowly, as your confidence builds with the longer you go without getting worse again. These fears can also leave us completely confused and unsure of what we should allow our body to do or not do.

Rising Again verse copy

On a purely physical level, I have also discovered that, after years of leaking spinal fluid from your spine, your whole nervous, and intracranial pressure, system seems to be completely messed up!! Over the months and years of leaking I have become hypersensitive to even the smallest pressure changes in my head and spine. These physical ailments added immensely to the struggle to cope with even small amounts of stress and anxiety whilst leaking and during recovery. This is due to stress and anxiety naturally affecting intracranial pressure anyway, meaning that the physical, mental and emotional become even more intrinsically linked. Even more so because any heightened emotion, especially crying and laughing (or raising your voice in excitement, passion or anger), are brutal on our already hypersensitive heads.

I found the only way to try and deal with all this was by learning to stay as calm, peaceful and quiet as possible. (I already experienced this from leaking – as can be read in this article). This means we have to avoid stressful and anxiety inducing situations when we can – whilst ‘leaking’ and especially in the early months of recovery – which is not easy when we are trying to holistically manage and recover from a debilitating illness, still have to deal with medical professionals and hospitals, and have a family and home to look after (at the very least). It would be even harder if I had had to try and go back to any of a massive spectrum of jobs and careers which do not allow an abundance of time for calm and quiet individual activity. I cannot ‘multi-task’ anything like I used to be able to. Such things are still often way too overwhelming for my current cognitive capacity – although still obviously improving. Even now I also still struggle to ‘rush about’, especially in ‘busy’ or ‘bustling’ environments (even more so if I have to talk to and interact with others as well) so I have to try and maintain more order and calm throughout my life than most people.

Initially, even simply doing more ‘normal’ things again – like going to shops or being in an environment with lots of people – can induce anxiety. As it would for anyone recovering from a long term, previously debilitating, medical (especially a neurological condition). However, this then perpetuates itself because we are already so hypersensitive and thus prone to such things. These environments are already ‘taxing’ on our ‘foggy’ heads because of all the overload of mental stimulation. But having to interact with people and talk a lot can also soon leave our heads even more full of pressure and thus struggling to concentrate and cognitively process what is happening and how we need to respond. So we have to be careful about how much we subject our heads to.

This unfortunately meant I often found myself ‘avoiding people’ at times – especially for the first few months of recovery. This was truly heartbreaking for me because I really do love people and like to talk to them about their lives. But talking, for even short periods of time, would simply make my head worse. Although this has very much improved overtime, my head getting worse from simply talking can still regularly be an issue.

The other key problem with our recovery is that to improve our physical conditioning we have to exercise. But exercise involves exertion, which is another trigger for the higher pressure hypersensitivity. So again it’s a vicious cycle. After the first awful couple of months post-treatment when I still couldn’t walk far at all, I subsequently found that gentle, and initially slow, walking often helped my head more than trying to rest lying down or reclined. Since early December ‘17, I decided to keep my body upright all day and quickly increased the amount I walked up to an average of 3-5 miles a day over 2-4 separate walks. The walks started off very slowly – but my pace slowly increased as my head and spine improved. Long walks – alone – also gave me, and still give me, the much needed space to calm and relax my body and mind, as well as improve any anxiety and my general conditioning. Walking is also very liberating after the many months over the past few years I couldn’t really leave the house.

I did discover that walking was much easier on my head if I walked quietly (or normally listening to something uplifting, inspiring and calming on my smartphone) on my own. Due to the increased breath use – walking and talking at the same time are more of a challenge. I can walk much further more easily on my own than with others. Similarly, I can also get more done at home when I am not required to talk at the same time. Moving about a lot and talking (especially more loudly) can be a bad combination for my head. Although this slowly gets better over time.

Rising Again copy

Other ongoing physical symptoms include varying head pressure often felt mostly in the lower forehead and especially around and behind the eyes when worse. (When particularly bad it can feel like your eyes might burst out of your head). But I can also feel pressure in the occipital region (bottom of skull/ top of spine) and down the spine (especially in the lower lumbar spine). But it’s a slightly different sensation to ‘low pressure’ (leaking) occipital/ neck ‘pulling’ headache. Although harder to differentiate in the early days of recovery.

The main difference that slowly becomes clearer (after much initial confusion) with this ‘higher pressure’ type of pain is – rather than increasingly getting worse throughout the day (or even over a short period of time being upright) – like it did when obviously leaking, it tends to instead come and go at various points in the day according to what is setting off the ‘hypersensitivity’ at that time. Even now, it can still get worse until my head feels full, my ears crackle and pop and sometimes it makes me yawn a lot and feel rather sleepy – especially due to the pressure behind and around the eyes. It can also make me feel slightly shaky, rather detached from the real world, my vision can get slightly blurry, my cognitive processing gets a bit more sluggish, I can occasionally feel a bit nauseous (in the early weeks after my EBP it could often make me physically gag) and my heart can beat noticeably faster. Hence adding to an ‘anxious’ feeling. But this normally gets better again if I spend some time staying upright but being quiet, calm, keeping my spine straighter and move about more gently and slowly. If it gets too bad – often a quiet walk or sitting quietly for a bit helps.

The other main difference to ‘low pressure headaches’ is that it doesn’t get better lying down – although lying down may still rest your body somewhat – hence the confusion. I never lie down in the day anymore because it tends to make my head worse. However, all of these kind of reactions mentioned above are slowly getting less acute or intense and much more manageable as recovery improves.

Waking up in the mornings can also still be problematic at times because of the lying down. I still often (most days) have increasing headaches around and behind my eyes and in my lower forehead, and can sometimes feel slightly nauseous soon after I wake up (this is especially prominent if I try and stay in bed too long once awake). Unlike when ‘leaking’ – I subsequently find that I must get up once I have been awake a little while – whatever time it is. I am known to get up anytime from between 3:30am-8:30am depending on the day and when I happen to wake up (unless the 6:30am alarm on school days wakes me first). Once I do get up the main headache goes away quite quickly these days – although my head and spine can remain feeling strangely ‘full’ but without obvious pain. (In the initial weeks after my blood patch, the headache wouldn’t always ease much getting up – at least at first. I think the exertion of getting up and interacting/ talking with my family would complicate it and I could often feel very unwell and often feel sick and gag from trying to ‘do things’. So then I would then try and lie down again to be still and quiet – but would end up still feeling very ill and then simply continue to physically gag from the nausea and increasing pain from lying down (which simply adds to the exertion headache – perpetuating everything). It’s tormentingly confusing and very hard to get relief in any position in the early days of recovery. Medication (initally acatezolomide, then after 2 months a switch to nortriptyline, in my case) can help some of the underlying problem or pain. But not necessarily the hypersensitive reactions to changes in intracranial pressure. Which is why it is so utterly confusing and brutal on your mental health – which adds to the anxiety we are already prone to – as I write about here in my 6 month post patch update).

Bending my neck down to read, whilst walking or to look at things (like my smartphone), or bending my spine to do things – tends to also obviously increase the pressure in my head and make my ears feel full and pop. As does carrying moderately heavy things. So I am still super careful and gentle with movements involving my spine. I just can’t be sure that it’s OK to lift and bend much still, so I still self-impose many post-EBP style restrictions and tend to always kneel first to pick things up off the floor, unload the dishwasher or put washing in, or take it out, of the machine. Over time I have gently allowed my spine to bend and lift a bit more – but only very carefully and cautiously.

During my years of leaking and my experiences of rebound high pressure (post treatment) I always found sitting down would tend to increase the pressure in my head/ spine or increase my leak symptoms when leaking. So I used to stand a lot more when upright. This has improved so much and I can sit for longer and longer, but it is often still harder for me to sit (relaxed) for longer periods of time (the sofa can be the worst place due to the softness of the seat). I actually find I am better sitting with my back very straight and legs bent directly in front, with the soles of my feet touching the floor. Slouching, leaning back too far or putting my feet up is no good, at all, for my head or spine.

I know the sitting issues have also been aggravated too by the general ongoing tension up my spine. I personally hypothesise that much of this is probably down to the higher pressure/ higher volume of spinal fluid pushing against my nerve roots. But it’s obviously also linked to the years of pain and physical tension in my head and spine and also the lack of natural movement. It’s hard to know how to combat this much whilst still restricting movement. It improves little by little and lots of walking and the general rehabilitation of doing things around the house and going shopping (limiting how much is carried) etc helps it a lot, thankfully. But I have found that this can’t really be overcome by trying to ‘force it better’. Gentle movement and gentle lifting, whilst remaining very patient with regards to ongoing ‘pressure issues’ is so important. I just have to listen to my body and head. Trying to ‘push myself’ and rush this process of less pain and tension in my head and down my spine can just lead to relapse and in hindsight has probably contributed to my own before.

(In hindsight, I now think that I experienced rebound high pressure symptoms at least after my second (11 months post leak onset) and third blood patches (15 months in – when I was also treated with acetazolomide) but I always got worse again many weeks to months later. I do not know if I was also still leaking a bit too after any of my patches (apart from a bit after the first perhaps) or what exactly brought on the consistent obvious major relapses. (Apart from when I fell over again badly in May 2017). I always got much better after blind lumbar high volume EBP and could spend much more time upright – often all day – over the following weeks and months – but was never symptom free. But it’s all FAR too confusing to say for sure and the confusion only gets harder the longer you have been leaking. Medical professionals in the UK normally do not understand these medical conditions enough to support you well either. Which makes living through it immensely hard and another challenging battle to fight, whilst you are utterly exhausted and acutely hypersensitive to stress and anxiety anyway. This all contributed to a major crisis in my own mental health (see Breaking Through the Darkness), including acute suicidal ideation, 2 months after my second EBP. This almost reoccurred again 2 months after the 4th patch that sealed me, as I try to describe in my 6 month post patch update). 

Rising Again quote copy

However, regardless of all the immense and overwhelming challenges of living with a ‘leak’ for so long and now enduring the slow recovery process…

There is still so much from the past few years to treasure!

So it’s that which I want to focus on to finish…

Beauty can become even more beautiful once you have tasted of deep pain and debilitation – a theme that I wrote about in ‘Suffering into a Deeper Spiritual Awakening’. I have certainly learnt more about what truly matters in life. I see and notice beauty even more clearly around me – throughout creation and in other people. My heart is so much more tender and compassionate. I truly FEEL others pain much more deeply than I used to. My understanding of other people’s struggles is so much more profound.

If I could go back and had the choice to have or not have the leak – of course in so many ways I wish we had never had to walk through such an awfully traumatic and exhausting season in life.

And yet…

I would never want give up the beautiful lessons learnt or the wonderful people met. I could not deny the privilege of experiencing the depth of the valley of darkness – whilst actually being able to rise and recover again, as I hopefully increasingly move up towards more heights of better health. It has changed and increased the capacity of my heart in ways that I cannot even begin to fully explain. It has stretched my limited perspective and expanded my horizons. It has changed how I see and relate to others and deepened my love – for God and all people.

So with hindsight would I choose to personally go through such a desolate season of pain and suffering – because of what can be learnt and gained?

If I could have known, in advance, what the never-ending, deeply dark, valley entailed, I could not have chosen that road for myself or my family. Nor would I choose for anyone else to go through it either. Which is why I continue to raise awareness about the realities of living with the condition. In the hope that others will not have to suffer as deeply and as long as I have.

But… I would choose the new heights of beauty discovered in and from the depths of pain. Because they have transformed me for the better. They have brought holistic growth and resilience in ways I could never have achieved without going through such a raw deep struggle. I have also been able to connect and help others going through the same hell that I had to.

I have honestly been utterly shattered and broken by the past few years – in so many different ways.

And yet…

To be ‘broken and shattered’ is not always a bad thing long term. It strips you back, shows you what is truly important and gives you a new perspective on life and love. We can then hopefully one day, perhaps one day, become even more stable, loving, humble, understanding and holistically healthy people in the end. Until we can truly see that the years of pain become an investment for a better future – all round – that we previously could not see.

So for all those still suffering immensely with these awful conditions. I honestly feel the depths of your never-ending pain with you – but please take heart! And do not give up hope! Last year I wasn’t sure I could or would ever be well. I wasn’t sure that I had the strength left to make it through another day of fighting on so many different levels. I had again reached the absolute end of myself. But my journey shows that we really do not know what tomorrow might bring. That is why I have wanted to tell you my own story. In the hope that we will keep holding on and hoping for a better future – we cannot yet see – together.

“Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain.” – Richard M. Nixon

IMG_1644
Our family on a beautiful and very blessed holiday (fully upright!!!) in Weymouth, UK, July 2018! (Which we had to cancel in 2017 due to a complete relapse of my chronic spinal CSF Leak). Our children Aimee and Beth were 7 & 10 when this nightmare began and our lives completely changed, they are now 11 & 13.

Please do comment or ask any questions below. Or alternatively you can email me at beckyhillblog@outlook.com

To read more about my story of living with and recovering from a chronic spinal CSF Leak click here.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a complication of epidural blood patching. 

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstandings and great distress on my already immensely long winded and difficult medical journey.

This other in depth 2018 medical paper is about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate diagnostic tool for SIH (low pressure) and RIH (rebound high pressure) as this paper refers to as does the 10 myths paper. My initial LP in February 2015 reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.