“Perseverance is rooted in hope. We persevere when we believe that what awaits us is worth the fight.” – Sarah Walton
Sadly, following just over a year with much more ‘stable baseline’ arachnoiditis/ CSF leak symptoms…
I finally succumbed to a new flare.
Another relapse.
And it was again … BAD.
Bad enough that a 10 day course of 40mg prednisolone (oral steroid) hardly touched it….Took the edge off maybe… But certainly couldn’t stop it!
That is the power of my arachnoiditis flares. Once established – they seem untouchable to halt.
… Until we use the IV Methylprednisolone 1g a day x3.
Until we hit the inflammation HARD & FAST.
That’s the only thing that seems to stop it in its tracks and subsequently reverse the relapse process… back into recovery.
I have again documented this flare with a new YouTube video (see below) made post IV treatment. But it includes some footage from the flare itself.
I make these videos to raise awareness, to educate, to continue to tell my story, inform others of my progress and also to process my own trauma.
Because it’s always traumatic.
To feel that abhorrently unwell. To feel so vulnerable and out of control. To be brutally reminded of the nightmare of dozens of previous relapses … and especially the trauma of the memories of the ones from before…
… from before we knew about the central nervous system inflammation. About the Arachnoiditis that seems to have been there from the start.
Hiding in plain sight for many years.
Before we understood – about the arachnoiditis inflammation and the way these flares always seems to take me right back into my acute low pressure/ spinal CSF leak symptoms.
Before we understood ALL that … I just had to endure, hold on and attempt not to deeply despair at the horrendous symptoms in my whole brain, spine, nervous system and whole body. That take me over and force me back to bed. Pretty much all day every day. And back then we didn’t really know how best to treat it. So I would often be like that for months.
It is easier now.
You see I have a ‘plan’.
The support of two great neurologists at two NHS trusts who work together to ensure I get access to the best treatment as fast as we can.
Also the oral prednisolone 40mg DID help! They stopped terrible symptoms getting totally and utterly unbearable with ‘relapse lightening speed’. But it couldn’t stop it. And the day I did stop it to have the IV later on. My symptoms crashed in super quick time.
RELAPSE TRIGGERS
The relapse started after a mix of long car journeys to see family across the U.K. Then on top of that walking into a door frame, bashing my knee HARD and jolting my spine. Thankfully I happened to have a follow up telephone appointment with my CSF leak specialist neurologist the day things really took a turn for the worse – so that really was helpful and another undeniable moment of divine providence I am so grateful for. So he recommended we ask my local Neurologist to arrange the IV. As is the arrangement. As is my medical protocol already established over the past 3 years.
This is my 4th IV in 3 years since I was diagnosed with arachnoiditis. Although in reality it’s always been there since my fall from a ladder in January 2015. That’s what my MRI’s show from March 2015 and that’s the story my symptoms tell me.
It’s always been the same story. From day 1 until now. The same pattern of the initial illness to every relapse ever since. Although my lumbar/ sacral/ leg/ feet/ bladder symptoms have got worse over the years too.
I had the IVs Methylprednisolone 1g Thursday 24th – Saturday 26th August 2023 on GPAU (General Practice Assessment Unit) at my local hospital.
And I am thankful to report that I am now doing a lot better.
It normally takes a couple of weeks to truly get back to ‘my normal baseline’ symptoms. And today as I am writing this we are two weeks post start of the IV. Nearly 4 weeks since this all started. I have just finished the prednisolone taper from 30mg down to 5mg and have just returned to 5mg every other day. Today is my first steroid free day in about 3 1/2 weeks. Although I have taken 75mg diclofenac today to cover me as I try and phase out the steroids back to my normal 5mg every other day. I have also recently returned to my normal 4.5ml of LDN. (Low Dose Naltrexone). (Just to note I also have had to use Zopiclone (sleeping tablet) 7.5mg at night when on higher dose steroids. Although my sleep is now improving again too).
I am finally beginning to feel like ‘my normal’ is pretty much back – give or take a slightly more spacey head at times. But that is also improving each day.
I am back to walking over 10k steps a day and doing lots around the house to keep me moving about. I am also slowly introducing more going out a bit further and will start driving short distances again soon.
So it’s good news.
It came.
It took me down.
We fought back.
We conquered.
I am recovering.
“Endurance is not just the ability to bear a hard thing, but to turn it into glory” – Philip Yancey
For all this I am extremely thankful. To have diagnosis’. (Arachnoiditis & a Spinal CSF leak). To have neurology support at two hospitals. To have a treatment plan that works. To have GP’s who understand.
It all helps so much. The major battles are already fought and won. I have my treatment plan and supportive doctors in my corner. But in reality there are always many small battles along the way. Making lots of calls, sending lots of emails, following up and explaining things again and again. Reminding medical staff I have to lie down as it can’t sit comfortably and can’t be upright at all early on in a flare. Lying down in the car to get to hospital as I cannot tolerate sitting up. Lying down in waiting rooms – hoping for enough chairs together that are free. Otherwise we carry a yoga mat for me to lie on the floor without getting completely dirty. Then there is the chaos at home of me not being able to do things … although even that is easier now my girls are 16 & 18 and can help so much more.
For all the easier things about my story I know I am blessed. I am one of the fortunate ones. Because this level of openminded medical support can be unheard of in the lives of people with suspected or actual arachnoiditis or AA (adhesive arachnoiditis). Still my doctors are all learning with me. But as we learn together the support gets more solid, more understanding. Which really does help counteract the trauma of many years of ‘doctors not understanding’ (as I wrote about so vividly here after counselling.)
So that is why I continue to share my story. I don’t take my privilege for granted: I try to raise awareness. To educate doctors, patients and family and friends. To connect with you in your immense struggle, confusion & despair. To show you ways and treatments that ‘might’ help you too – if you can find the right doctors to help you. To implore you to just keep ‘holding on’ … for years if that’s what it takes (like in my case)… because things can still get better in the end. There is always hope.
Everything I discuss in my videos is based on personal experience, years of symptom observations, plus my own research and listening to others stories. My experiences are unique and thus uniquely managed by my two neurology teams and two different Midlands UK NHS hospitals. So I cannot comment or offer any medical explanations, advice or diagnosis to others. I only share my own story in the hope it may help others on their unique journeys to more answers. I can only answer your questions according to my own limited experiences and the research I have done.
But from what some of you do tell me – sharing my story can help right? Just to know that somebody – somewhere – sometimes across vast oceans ‘gets it’. That they understand your deepest struggle, your most excruciating pain. The daily overwhelming choice to try and keep on finding ways to live despite the constant trauma, questions, confusion, misunderstandings and the deepest of pains.
So today I write to remind you that I really do understand. But these days – more than ever – 8 1/2 years on. I am learning to find a way through it – dare I say – to even THRIVE.
For these reasons my videos and articles are all fully public and can be shared with anyone, by anyone, on any platform. I also write to make translation easier because I know many non-English speakers are keen to follow my story too which is harder with the videos.
So here it is – here is my new video, I have included a content summary below so that people can more easily skip through and find the parts they are interested in.
WHY DO MY LOW PRESSURE / SPINAL CSF LEAK SYMPTOMS GET SO MUCH WORSE DURING MY ARACHNOIDITIS FLARES?
The video documents my recent arachnoiditis flare in August 2023. During this video I also consider the question as to why my low pressure headache/ spinal csf leak symptoms get equally acute during the flare. How does the increase in the inflammation and the physiological mechanisms at play cause me to revert to such distinct Spinal csf leak symptoms? As has always been the case in my medical history over the past 8 1/2 years since a ladder fall in January 2015.
In it I present some theories of my own as to why this happens so radically including:
I leak more due to higher pressure from inflammation
I seep more from the adhesive area or via my compromised Dura in that area.
The inflammation blocks my spinal fluid flow causing radical changes in ICP.
Or the one I discuss most in this video: that the inflammation pulls at my spinal cord – especially if the more adhesive area is trying to adhere further. Subsequently, bringing an increased ‘tethering sensation’ to my spine. Pulling my brain stem to create that ‘brain sag’ affect – the feeling of ‘my skull being pulled into my neck’. But then also ‘my sacrum being pulled into my lumbar spine’. Could it be that this process then blocks flow too? Causing very real sensation of my spine being tightened and clamped at my neck and sacrum which further supports this theory. Also interestingly I had some people who had previously had surgery for ‘tethered cord syndrome’ comment on one of my ‘bizzare symptoms’ videos telling me that my symptoms sounded like I had a tethered spinal cord. To which I replied – that would make sense if I have AA. Which everything points to me having – at least mildly.
But they are all just ‘theory’ because not enough research has been done. Not enough patients have been studied to really know. Although the more years that go on … the more I realise there is a lot of ‘medicine’ that is about hypotheses and theory. Although then there is the force of science that wants that evidence and proof to back it up.
But I guess that there is a sense in which – I am the evidence. My medical history, scans, test data and response to treatment are all part of ‘the science of my story’. Even if I may be a bit of an anomaly.
Please do comment, reply & let me know if you have any similar experiences – especially if you have both arachnoiditis / AA as well as a spinal CSF leak. Do you find your low pressure / spinal CSF leak symptoms get increasingly more acute when your arachnoiditis is flaring? Do steroids or anti-inflammatories help you too with all your symptoms?
The more we talk and discuss – the stronger our theories can become. So it helps me to hear your stories – as much as your hearing mind hopefully helps you.
Content Summary so video can be skimmed through.
0:12 Relapse Intro
1:06 Post flare recap
1:52 WHY DO MY SPINAL CSF LEAK/ LOW PRESSURE SYMPTOMS
GET SO MUCH WORSE DURING MY ARACHNOIDITIS RELAPSES?
2:00 Low pressure/ spinal CSF leak symptoms
3:48 Explaining my acute low pressure symptoms during relapse
5:50 Taking 40mg oral prednisolone (steroid)
6:03 My legs are not working properly
6:50 Relapse cause/ triggers: car travel then jolting spine
11:38 Follow up call with Neurologist
13:40 IV Methylprednisolone 1g IV x3 days on GPAU
14:40 Do high dose steroids increase ICP?
16:40 2 week prednisolone taper from 30mg to 5mg every other day normal dose
18:42 Can you relate? Do you get similar symptoms? Please do comment or reply.
Please remember that all videos and articles can be shared with anyone, by anyone, on any platform. As they are all in public realm.
So this is where I say ‘goodbye for now’. I am sorry I don’t update my blogs and videos as much as I used to. But to be honest I often just don’t have the time or energy. I like to do this. I like my story having a wider purpose. But it is also a challenge to achieve amidst even my mildest daily symptoms. So forgive me when I don’t write or make videos for a while. It’s normally because I am just ‘trying to find ways to embrace the life I have.’ And thrive as much as I can within all the restrictions, pain, limitations and debilitation.
But I do want to end by saying…
THANK YOU!
Thank you for listening. Thank you for taking the time to enter into my world for a moment. Thank you for your grace and kindness in bearing with my ponderings, wrestling’s and many questions.
You are appreciated. You are valued. And you are loved.
“When we know we are loved we find it easy to love other people” John Sentamu
Please do make comments or ask questions on YouTube, here, my social media pages or on Facebook group pages and I will try to reply when I can
For the full summary of my medical history including ladder fall in January 2015, spinal CSF leak diagnosis and footage of my January 2021 arachnoiditis flare see this 5 min video:
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.
So my body decided this last week – perhaps seeing as it’s ARACHNOIDITIS AWARENESS MONTH 2022 – to completely relapse in typically explosive fashion! The full flare burst in on Tuesday following a slow deterioration after travelling a couple of hours by car to see my specialist Spinal CSF Leak neurologist (who also leads on my Arachnoiditis care) and having a neuro examination last Friday.
The neurological examination included straight leg raises, leg strength tests, reflexes, sensation tests etc.
I wonder if my body was slightly more vulnerable because I had slightly lowered my steroids and LDN over recent weeks. I often take 10mg of prednisolone if I am going on a long car journey – but didn’t this time. I only took 5mg. Then the travelling, neurological examination then the car journey the next day (as we stayed over in a hotel to break up the journey) was the final trigger to the almighty flare.
By the Saturday morning I was already feeling worse and the car journey home harder. And then things slowly deteriorated until the full symptom explosion on Tuesday.
It was so tough to be back there again – in a massive relapse – after a much better and more stable 18 months.
I am extremely grateful for the swift response of my local neurologist who supports me with the help of my CSF leak neurologist. They are the ones who treat me locally with IV methylprednisolone. She responded the same day we reported the relapse and set in motion the previous-agreed treatment plan (3 day course methylprednisolone (steroid) 1g bag a day).
Unfortunately though, the day ward at my local hospital didn’t have any beds until the next Wednesday so we tried A&E Friday after being redirected by them if I needed more urgent care. Thankfully it was unusually quiet at 10:30am and after speedy assessment I was quickly moved to a quiet dark room on GPAU (GP ASSESSMENT UNIT) and after lots of waiting, seeing a medical doctor and neurologist and after various examinations/ blood tests I was finally given the steroids at about 7:45pm that evening. I then went back on the Saturday and Sunday for the full course – which were much quicker. Those IV’s only took about 1 hour.
I am very thankful to both my consultants, and the doctors and medical staff I saw that day, who enabled access to this level of rapid care. It is my quickest treatment and acute symptom reversal to date. What used to take many weeks or months to slowly improve (& often not fully) is now is happening in a week.
Which really is a miracle to me.
I am so pleased to report that the results of the steroid treatment were again were radical, in completely reversing and turning around the flare.
Rapid treatment of flares is the key to stop further damage (nerve clumping and adhesions) and allows me to recover more quickly as I lose less conditioning – so it’s been good to find a new possible treatment pathway IF the day ward is not able to help so quickly.
To raise awareness I have made video and photo diaries from the past week of relapse symptom progression and the impact of the IV steroids (1 gram bag of methylprednisolone x3 over 3 days). My hope is that in time more people can be diagnosed far quicker than the 5 1/2 years it took me and get access to similar treatment whilst the condition is still more able to respond.
There are of course many risks to high dose and long term steroid use especially osteoporosis, adrenal gland issues and many other things. This does mean steroid treatment is not something to be taken lightly. But in my eyes – the risks to my body of further nerve clumping and adhesions in my lumbar spine that could leave me at least partially – if not fully paralysed and in constant intractable pain and thus bed bound – is a MUCH greater risk. To my body, mental health and even an osteoporosis risk in itself if I can’t walk. So the use of steroids must be carefully managed by an experienced medical team – but if they both radically improve the AA symptoms, neuro inflammation damage, quality of life, general health and mental health long term – to me it is worth the risk.
My hope is that in time as Arachnoiditis / Adhesive Arachnoiditis is more recognised, diagnosed and researched that more medications may become available that have less risks long term. This is what has happened with other neuro inflammatory conditions like MS or other inflammatory conditions such as rheumatoid arthritis or crohn’s / colitis. But that is partly because many more people suffer from these conditions and there is much more research and clinical trials done.
The new video is a 25min video in total because it includes video and photo diaries of my whole journey from relapse explosion to post IV recovery. But the information below the video in YouTube has chapter summary’s which allows you to skip through to different parts for ease and speed. And also enables people to go back to particular parts of interest.
8:05 Twitching/ jolting/ electric shock sensation – take 2mg diazepam
9:36 Struggling to walk up stairs
10:06 Day 4 of flare – really struggling. Go to A&E and moved to GPAU.
11:52 First dose of 1 gram bag of IV methylprednisolone on GPAU unit at local hospital
12:23 Day 2 of IV steroid treatment including update on recovery morning after first lot
16:20 Photos of receiving second dose of IV steroids
16:39 Stairs walking much improved
16:48 Day 3 of IV steroid treatment including update on recovery morning after 2nd dose
18:58 Final 1 gram bag of methylprednisolone at GPAU unit
19:05 Final update on recovery
My hope in making and sharing these videos is that awareness is raised. That patients, their families & friends, doctors, medical staff and the general public are educated and that more people with arachnoiditis can get diagnosed and treated. Especially before the condition often becomes more untreatable as it progresses.
It took me 5 1/2 years to get diagnosed with Arachnoiditis after my initial ladder fall and spinal CSF leak onset. Because of that I already have permanent damage to my spine/ nervous system. I battle constant pain, spinal fluid flow issues, I cannot comfortably sit down any more. My neurologist still believes I probably also have the small CSF leak shown on my last full protocol spinal CSF leak MRI’s in September 2019. Which probably complicates things further. My whole Intracranial Pressure System is completely dysregulated.
And yet the Arachnoiditis is still mild enough AA that I can still respond radically to steroid treatment of the acute flares. And we can hopefully now stop more rapid progression into more debilitating AA happening soon.
So I also make videos and share my story here to give others hope. Things can improve.
Please don’t give up!
It is such a hard, deeply painful, grief full, life altering journey to go on…
But an arachnoiditis/ AA diagnosis is not the end!
We are all learning together. And in time – maybe if we all can do our bit to raise awareness. To educate. To keep on fighting even when we just want to give up. Then things just might get easier for us and those patients coming behind us in the future.
So that together we can change the outcome for at least one desperate, struggling and broken soul with – or yet to be diagnosed – with arachnoiditis/ AA.
“Those who have a ‘why’ to live, can bear with almost any ‘how.’”
Viktor E. Frankl, “Man’s Search for Meaning”
“Perseverance is rooted in hope. We persevere when we believe that what awaits us is worth the fight.”
– Sarah Walton
Please do make comments or ask questions on YouTube, here, my social media pages or on Facebook group pages and I will try to reply when I can
For the full summary of my medical history including ladder fall in January 2015, spinal CSF leak diagnosis and footage of my January 2021 arachnoiditis flare see this 5 min video.
“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 seeon scans until it becomes adhesiveand 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 clarityreturned 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….
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 clumpingwhich 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 withsevere adhesive arachnoiditis can end up paralysed, partially paralysed andincontinent 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 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.
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 normalitywhich 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.”
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?”
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
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.
Recently I have thought a lot about our shared humanity. The fact that we are ALL equal humans.
One is not above the other. We are all the same.
We all have strengths and weaknesses, we all have hurts and joys, we are all somewhat fragile – never fully knowing what our tomorrow will look like or what the years to come might bring.
We are all the same. And yet we are all utterly unique.
There is only one of you and there is only one of me. And yet, however different we are, we also share so much that is similar. Wherever we go in the world – there are people who are similar to us. In that we share a common humanity.
One of the great joys of my life is getting to know people from backgrounds and cultures that are very different from my own. I have had the wonderful opportunity to meet and become friends with such a wide and varied spectrum of people from all over the world. And ironically the more diverse the people I meet – the more I see the common threads of our humanity. I love to celebrate and learn from the differences. But most of all I love to see how much we are all the same underneath.
Over the past few years I have especially discovered how brokenness and weakness has the potential to help us to see our equal humanity. Experiencing more of our own human inadequacy can bring much more humility – which helps to crush any sense of superiority. Superiority and judgement are probably the biggest barriers to us connecting with others and embracing our shared humanity.
“Humility is about coming to grips with our humanity… Pride is a determination to be seen as bigger than we are. When we are humble, we are down to earth. No energy is wasted on pretension. A humble man can be taken at face value.”– Erwin McManus
However, it’s not just superiority that’s the problem – often both a sense of superiority AND inferiority can bring a feeling of ‘separateness’ and ‘individuality’. Both feeling above and beneath people separates us from others because both cause us to focus on ourselves more and how much better or worse we are than other people. Which can stop us truly SEEING others and can cause us to miss what is going on in their lives.
As I have so vividly learnt over recent years, it is often suffering that is the equaliser. In my own experience suffering tends to somewhat level the playing field. When we are hit – face on – with our human vulnerability and fragility we soon start to see how we and humanity as a whole is prone to such brokenness. It doesn’t matter how well you are educated, how many letters you have after your name, what titles you have collected or how much money you have.
As humans we will all face times of suffering. And those seasons of suffering tend to remind us of who we are…
Fragile humans trying our best to live this life full of unknowns the best we can.
“Suffering invites us to be radically human with one another, perhaps doing nothing more than reaching across the table, clasping hands, and weeping together. We are afforded the chance to create a safe place for someone else to mourn…” – Jen Hatmaker
It is true, in my own life experience and observations, that it is often suffering that ‘invites us to be radically human with one another.’ It strips us of all our titles, labels and achievements and touches the heart. The rich get sick and die and the poor get sick and die. One might have the money to make that journey of suffering a bit less painful. But both the rich and poor still have to walk the painful journey that suffering brings.
It is thus, often through suffering, that we discover a potential for more authentic connection with others. Suffering can strip us of our ability to ‘hide’ from others. Especially when our suffering is obvious and effects our everyday life. Suffering can expose us – but if we can embrace the vulnerability that the exposure brings, then we have the potential to discover more human connection in that place.
IF we are willing to live in the discomfort of being more fully known.
“The strongest relationships are formed in heat of difficulty and the confession of weakness…. sometimes we feel like we have to present a perfect image to the world that everything is OK because we have faith. But in reality honesty breads more honesty… it’s about sharing our common humanity”– Patrick Regan
It is true that honesty breads more honesty. When I talk openly to others about my many physical and mental health battles over the past few years since falling off a ladder in 2015 and experiencing a long term debilitating spinal/ brain injury, I find that others are more willing to open up about their own physical and mental health battles. When you are honest about your own battles with anxiety, depression and suicidal thoughts – others will often open up to you about their’s as well. Sometimes people who you never even knew struggled with such things, will reveal more of the dark depths of their own similar wrestling’s. Sometimes they have never really told anyone before. It brings more common understanding and empathy. And it is in that safe place of empathy that you discover more connection.
Human connection is most beautifully seen and experienced when we open up our lives and become increasingly REAL and honest with others. When we allow ourselves to be more fully known.
So I would like to invite us all today to choose to be more ‘fully seen’ to remember that we are ‘all the same’. We are neither superior or inferior to others. Your background, titles, labels, achievements, failures or weaknesses do not make you any more or any less human than the next.
Equal humans trying to find our way through our crazy lives. So as the saying goes…
‘Be kind. Because everyone you meet is fighting a battle that you know nothing about’.
Everyone experiences suffering – if it’s not you today – then it might be you tomorrow. So let’s embrace our common humanity. And we might just be able to help to make our broken world a better place for us all to live. Regardless of what comes our way.
“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.
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.
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.
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).
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
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
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.
“Compassion asks us to go where it hurts, to enter into the places of pain, to share in brokenness, fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human.”– Henri Nouwen
The meaning of the word compassion is literally ‘co-suffering’ or ‘to suffer together’. Compassion is not simply a feeling that comes and then passes like sympathy or pity. Having compassion is being so deeply moved in your heart with the pain of another that you are compelled to act to somehow alleviate that suffering.
We are literally ‘joining together’ with the one suffering to help and support them.
It’s actually a deeply painful emotion. But the intense feeling is not focused on ourselves – it focuses on ‘the other’ who is suffering in some way. This means, although painful, it is a deeply beautiful and even freeing emotion. Because it takes the focus off our own challenges, trials and pain and focuses our attention on supporting and helping someone else.
However, the irony of compassion is that we only truly feel it, and are moved by it, once we have first embraced our own life struggles and pain. Until we recognise the pain that suffering brings to us, we cannot truly begin to understand the pain it brings to others.
This is why some of the most compassionate people you will come across are those who have felt a similar pain to yours. It may not have been exactly the same, but they at least experienced it enough to see it and feel it in you.
Compassion is linked to empathy. Empathy enables us to understand and relate to what someone else is feeling. Compassion then takes empathy a step further, in that those empathetic feelings are intensified into a passion that leads to action. We are deeply moved to act! To do something to alleviate the person’s suffering. That act might be seemingly big or small, but it will be something that we actually do practically to help them. Motivated by the hope that it will help alleviate that persons suffering – even if only a little.
I really do love the quote at the top by Henri Nouwen. I believe the last sentence is particularly poignant:
“Compassion means full immersion in the condition of being human.”
What does he mean by this, what is the ‘condition of being human’?
To me one of the most striking characteristics of our humanity is our brokenness. It’s the fact that we are all born as vulnerable, weak and dependant babies. And we will also all die vulnerable and weak from sickness, an accident or old age. Our human body has a fragility and mortality about it which means that we are plagued by weakness in different ways. We have many vulnerabilities; physically, mentally and emotionally. We are all prone to seasons of suffering and struggle. We are also all imperfect, we all make mistakes.
There are no humans who truly make it through their whole lives feeling perpetually strong, having it ‘all together’ the whole time, without any obvious weakness, vulnerability or struggle. Some people might like to project that mirage to others but the reality is we are all imperfect and fragile in similar and different ways. The fact is, our common humanity dictates that – if we do live to old age – all this will become more than evident, as eventually our body and mind fade and stop working altogether. If we do not live that long then death perhaps will ‘take us out’ early, again brutally revealing our weakness and mortality.
It’s this understanding of our ‘common humanity’ that helps us to become more loving, empathetic and compassionate people. This is why it is actually in times of trial and suffering that our deepest bonds with other humans can be formed – through mutual understanding, love and compassion. This is because it’s often only as we come brutally face to face with our own personal weakness and vulnerability that we can potentially connect more wholeheartedly with others because of it.
“The strongest relationships are formed in the heat of difficulty and the confession of weakness… honesty breads more honesty… it’s about sharing our common humanity.”– Patrick Regan
Those we can share our whole lives with – our struggles, pain, vulnerabilities, weaknesses, shame and guilt – are those who we generally form the strongest bonds with. Relational safety comes in someone knowing our weakness and failings – but loving and staying loyal to us anyway. This is always when our connection with others becomes more deeply profound.
This is when love is most beautiful and its bonds become most powerful.
It is only when someone sees the depths of your own ‘darkness’ – but chooses to love you regardless – that the true beauty of deep relational connection blossoms. There is perhaps nothing more deeply moving in life than this. This is where true unconditional love abounds.
This is also the place that our sense of compassion is potentially deepened, because we have arrived at a place where we know what it is to be faced with our own darkness, vulnerability, suffering and shame. Our hearts can potentially become softer and more malleable towards others. We have been humbled by the distressing awareness of our weakness, which can make us kinder and more understanding to other’s weaknesses.
However, you will see that I used the word ‘potentially’ in that last paragraph twice! The truth is, not everyone who suffers will show increasing compassion to others. This is because suffering can go two ways: it can cause us to become more self consumed, hardhearted, angry and bitter OR it can help us become more tender, understanding, compassionate and loving.
Ironically, embracing our own weakness and pain in seasons of suffering – but then turning those feelings outward to focus it on having compassion for others – can actually help alleviate the suffering of both of us. Suffering always grows darker the more it pulls us back into ourselves. Compassion, instead, provides a light for the both the giver and receiver – as the giver directs their own pain into helping alleviate the pain of someone else.
Acting to alleviate another’s sufferinghelps bring more meaning and purpose to our own.
In reality though: in what ways can we practically act compassionately?Especially when in so many situations what we can actually do is so restricted?
The thing is, compassion doesn’t demand that we fully fix another’s difficult situation. For instance, when I was immensely suffering from an acute spinal fluid leak in recent years – I couldn’t reach out to another, who was also leaking, and fix their main physical problem. As much as I would have liked to have done so, we were both somewhat at the mercy of a debilitating and misunderstood condition. We couldn’t actually ‘fix’ it ourselves – we needed compassionate doctors to help. However, there are so many ways I could respond to and share another’s pain and act with compassion to their suffering.
Just telling another that we ‘get it’ and understand their pain can be an act of compassion. Which is one of the reasons I decided to write so honestly in this blog. If we can humbly ‘get over’ our own fears and insecurities of ‘getting real’ about our struggles, we can then choose to act compassionately by connecting and reaching out to another honestly – amidst our own, and their, pain. We can’t just think about it – that is sympathy or empathy. Compassion calls us to act on those feelings and practically connect to encourage, support and hopefully help alleviate some of the potential loneliness of suffering. Simply hearing ‘I get it’ means a lot to someone really struggling. This is often the first step in acting compassionately.
Giving your time to support someone struggling through spending time with them in person, over the phone or digitally can be an important act of compassion. Often patiently listening to them process their struggle and trying to understand their pain can help them immensely. Or simply looking for ways to encourage or uplift them in an empathetic way by sending some kind words, a card or gift. Practically, if we do live near by we might show compassion by cooking a meal, taking their kids to school or on a day out, or offering to drive them to a hospital appointment.
Little acts of compassion can speak the loudest when someone is struggling to make it through the next hour, let alone the next day. It was often the things above that spoke the loudest to me at the darkest moments of my own journey with a debilitating long term illness.
“Do small things with great love.” – Mother Teresa
Compassion doesn’t always require us to do something BIG! In fact, normally we can’t do something big – even if we had more time and resources. Many situations cannot be changed overnight with one action. There is a long and arduous process involved in acceptance, change and potential recovery. Compassion is often most profoundly shared in the little acts. The little things that shows someone in pain that you understand (or are trying to) and that you care.
However…
We need to keep in mind that the first step to being ‘moved with compassion’ – in choosing to ‘co-suffer’ with another – is that genuine compassion requires us to SEE and feel that person’s pain and struggle first. Before we do or say anything! That way, our words and actions will pour out from that heartfelt overflow of empathy. They will then be more obviously genuine and tender. You can’t fake compassion – it is easy to see in someone’s eyes, words and body language whether their supposedly compassionate words and actions are truly real or simply forced. In my own experience this can often be a problem for members of the medical profession, especially those who have lost that connection with their and their patients ‘common humanity’.
Genuine compassion will only flow out of our true hearts, when we have first seen, felt and embraced our own pain, vulnerability and weakness. If we have not done that effectively, if we insist on denying and attempting to cover over our own human brokenness, we will simply become increasingly self focused and self absorbed human beings who spend their time pridefully keeping up their mirage of strength and pretension at other’s expense. This will inevitably end up with those people getting increasingly frustrated with others or even despising other’s suffering – rather than being moved with compassion by it.
Is it not time to see more compassion in our world? Whether it’s loving the poverty stricken orphan in Ethiopia through child sponsorship, or simply actively listening to or taking a meal round for a friend or neighbour who is struggling. Can you imagine if our neighbourhoods, schools, hospitals and workplaces were full of truly compassionate people who knew personal pain, but could look past it, to recognise it in another. We could then support one another through the ups and downs of life without judgment, misunderstanding or ignorance.
Perhaps, if we embraced our own pain more, tried to understand it, then turned it outward to connect with another equal human – then we would all suffer a little less throughout our own unique life journeys. Compassion rarely makes all the pain go away. But all of our collective small acts of compassion can become another necessary cog in the bigger wheel of changing our world for the better – person, by person.
“Love your neighbour as yourself.” – The Bible (Mark 12:31)
So let us not forget that we are ALL the same. We all share a common humanity. We must try to love as we would want to be loved. Try to care, as we would like to be cared for. Try to understand, as we would want to be understood. Try to show the compassion that we would like to receive.
In the hope that little by little, kind word by kind word, small act by small act, we might help alleviate some more of the suffering and pain in this world – TOGETHER!
“Compassion asks us to go where it hurts, to enter into the places of pain, to share in brokenness, fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human.” – Henri Nouwen
“Any great calamity in the natural world – death, disease, bereavement – will awaken a man like nothing else could and he is never the same. We would never know the treasures of darkness, if we are always in the place of placid security.” – Oswald Chambers
If you have ever faced pitch black darkness – you know how hard it is to get around. In that place, if you want to get somewhere, you will have probably also experienced the desperate longing to discover more revealing light.
We tend to fumble around in darkness, utterly lost and insecure about where our feet should go. We have to move so slowly. Feeling our way around and through. Hoping to find a flicker of light, some moonlight, a torch or that revealing light switch that should instantly show the right path ahead.
In pitch black darkness, we all know that we must move towards a source of light to find a way out.
I can still vividly remember being on holiday in Menorca years ago – when our kids were small. We were staying in a small villa, which had shutters and at night was pitch black. One night, one of our small girls screamed out after having a nightmare and I literally jumped out of bed, half asleep. I instantly felt completely disorientated and enveloped by the confusion of the darkness around me.
Where was I? How could I reach my screaming child? Where was that light switch that I desperately needed?
In the pitch black, fear and anxiety often overwhelm you. Especially when you face the urgency of trying to get to your screaming child. In that moment I felt completely and utterly helpless as I felt the walls, trying to recall where that light switch was.
Eventually – after fumbling around for ages – I found that precious switch. With it came a stilling burst of light. My panic began to subside as I could see the way to reach my distressed little girl in her own room. And as she felt my presence in the light, as I held her in my reassuring arms and listened to her describe her scary dream – I was so thankful for that light.
The same is true in our lives.
Times of deep darkness disorient us.We can panic and become anxious as our way forward is hidden. We might fumble about trying to find a source of light to make the path ahead clear. We can feel desperate – longing to discover even a flicker of light.
Darkness quickly feels enveloping and all consuming. Its black fog often starts to seep into every area of our thoughts, emotions, actions and lives. We can’t seem to shake it off. Its mist covers everything we do. Until we feel like we are slowly being sucked to its desolate and empty core of despair.
And as it does… the desperate longing and need for light increases and intensifies every hour of every day. Until we know the flicker of a flame – ‘a little hope’ – is not enough anymore to guide us through the dense fog we are immersed in. We need a more powerful light – a more ‘substantial and secure hope’ – to get us through and illuminate, reveal and secure the path ahead.
But it is also in the ‘deep darkness’ that the ‘treasures of darkness’ are waiting to be found.For it is only in that place that we truly see how much we long for and need the light to survive. It is only when our eyes are blinded by the darkness that we fully realise the depths of our desperation and longing for the light to again truly SEE!
The past three years,or so, have been the hardest physical, mental, emotional and spiritual challenge of my life. My journey through an utterly debilitating chronic illness following my accident in January 2015 left me feeling more broken and weak than I ever have before.
And yet…
I have increasingly discovered that ‘broken and weak’ is the avenue God uses to draw us more deeply towards Him. It is in true human desperation that we realise how little strength we really have alone. Weakness, and the subsequent new level of humility it can usher in, is always the path to discovering just how deeply we need God.
But the stark reality is – the intense journey of brokenness is truly a painful and raw place to walk. Where layer upon layer of self-sufficiency, self-security, self-identity and self-confidence are brutally peeled away. Leaving us more and more exposed in our human ‘naked’ vulnerability and fragility. Even as you begin to tentatively emerge and ascend out of the valley of deep darkness, you can still feel very battered, bruised and disorientated from the utterly exhausting and often overwhelming fight.
Finding your way through the darker valleys of life, although intensely difficult, can also be an exceedingly beautiful journey; as your heart is softened, opened and humbled like never before.IF – and only IF – we truly invite God into the hidden depths of our vulnerability and pain.
It is only then that we discover and SEE the light of His love,
More intimately. More stunningly. More remarkably. Than ever before!
“The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.”– Psalms 34:18 (The Bible)
It has not always been easy on that relentless journey through life’s darker valleys. There have been moments of anger at God. Thoughts of betrayal. So much lack of understanding about what was really going on. I have had to wrestle through intensely difficult questions and thoughts.
I needed to ‘discover more of God’ in a FAR more real – and yet gritty – way.
I have also had to come to a deeper acceptance of the fact, that we all currently live in a ‘broken world’. And that it is probably not going to change, for many of us, any time soon.
The world was originally created perfect, with God, humanity and creation living in perfect ‘Shalom’ (peaceful)completeness, wholeness and harmony. But ever since humanity decided to do things ‘their way’ rather than the ‘Creator’s way’ in the garden of Eden. The ‘completeness and harmony’ of creation has been fractured and has been subsequently breaking down & slowly falling apart. Sickness, disease, genetic deformity, natural disaster, selfishness, rebellion and pride all entered the world as a consequence of that ‘fall’ and separation of humanity from the Perfect Designer of the universe.
It doesn’t mean God wanted me – or any of us – to be sick. Or that He caused me to fall that day to teach me a lesson. Sickness is just part of our broken world that is groaning to have its ‘Shalom’ completeness restored. God wasn’t the ‘author’ of my sickness, but He does promise to work with our fractured creation and turn it around for my good.
“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” – Romans 8:28 (The Bible)
Over the past few years I have increasingly ‘groaned’ alongside the whole of creation for the ultimate redemption and restoration of the Shalom. Matt and I have also never been more aware of the deep, yet at times exceedingly painful, tension that exists between the ‘now’ and the ‘not yet’. Between God’s perfect kingdom and the current world in which we live.
This life is our ‘in the meantime’ life…
Yet the promise is that we can also begin to increasingly experience the ‘not yet’ perfect kingdom of God – His Shalom – in the ‘now’ through Jesus Christ. Jesus broke into His fractured creation to reach broken humanity. He came to live in the centre of the tension – as one of us. To see and then experience the deepest and most painful suffering here – to bring the ‘not yet’ of God’s glorious kingdom into the broken reality of creations ‘now’.
God’s complete ‘Shalom’ (perfect, whole life, restoring, enveloping peace) is what we ALL yearn and long for in the depths of our spirits and souls. Especially in the midst of suffering. But it is not just a ‘fuzzy’ feeling of ‘inner peace & calm’.
‘Divine Shalom’ – is so much more!
It is the stillness of our entire being – even amidst the storm. It’s illuminating light – even when everything appears dark. It’s the divine ability of undeserved grace – displayed through our human weakness. It loves us whole – in the reality of our brokenness. It is perfect completeness – in the midst of our imperfection.
It’s so very hard to explain to you – with simple words – what has happened to me spiritually over the past three years. How can mere words describe the indescribable?! The only way I can explain it to you is that it was a profoundly deeper ‘spiritual awakening’.
I now SEE with new eyes. I now HEAR with new ears. I now FEEL with a new heart. I now THINK with new wisdom.
My own human ‘nakedness’ of weakness and vulnerability has been exposed and uncovered to a much greater depth. And it was in that place that I found more indescribable divine Love waiting patiently for me. It was as if, all the way through my journey of brokenness and pain, I was being drawn further to seek and discover, being taken deeper to search and find.
It was only when I saw and felt the depths of my weakness and inability that I experienced the glorious wonder of His strength rising up within me. It was only as my self-reliance was brutally crushed by my inability to cope, that my dependency on Him grew so much stronger. Until from deep within the broken clay jar vessel of my life I cried out to the one who created me…
“Make me whole again Daddy. Then shape and fill me anew, Holy Spirit. Mould me into Your Divine image Jesus. Nothing else really matters… All I need is You!!”
I had again reached that intimate place of deeper surrender.
When the darkness intensifies – our need for light increases. When blindness envelopes us – our longing to SEE truly grows. When our inner being is parched and empty – our spiritual hunger and thirst becomes more desperate. When the world can only offer silence – our spiritual ears long for His eternal song.
When trying to describe spiritual – awakenings, encounters or experiences. We often use ancient images, words and metaphors. That to some might sound ‘cryptic’. To others may be simple ‘poetic words’. But to those of us who have truly tasted and experienced the eternal immeasurable love of God – Father, Son and Spirit. To those who have discovered Him waiting for them in their deepest brokenness and pain. To those who have seen His mesmerising light in the darkness. To those who know they cannot live without His beautiful grace…
Such words truly connect with the deepest longings of our hearts. Desires that we know nothing in this world can even begin to satisfy.
I wrote these words about my recent struggles to inspire us today. So that – together – we can again perceive the divine call to our souls – in the midst of suffering – to stretch further, to reach out deeper and uncover more of the dazzling light of His Truth, that will enable us to SEE and experience more of …
…the stunning, transcendent, everlasting – yet intimately personal and experiential – Triune GOD…
Who is pure unconditional LOVE. The Author of undeserved GRACE. And the central beating heart of the perfect infinite SHALOM.
“If I find in myself desires which nothing in this world can satisfy, the only logical explanation is that I was made for another world.”― C.S. Lewis, (Mere Christianity)
Click here for a great video explanation of the Hebrew word ‘Shalom’
For more posts about my three year battle with a spinal CSF leak – please click here or click on the CSF Leak tab at the menu above.
Our greatest glory is not in never falling, but in rising every time we fall.– Confucius
It’s been a while since I have written here. The last six months have been a season of deep trial and anguish, whilst simultaneously becoming a season of great joy. My ongoing health battles have been truly exhausting and yet…
I am currently seeing some light at the end of the tunnel.
And today, I have rediscovered my voice to share my story.
Following just about holding on through the immense challenges of the the last three years – since I fell off that ladder in January 2015 – I can now pretty confidently say that it seems that I am currently in recovery from my CSF leak. We are hoping that this time – following epidural blood patch number four last September – that I can make a full recovery.
At the moment it looks like we are heading that way. And yet my three year journey has been full of a cycle of injury, treatment, recovery and relapse. So it has been intensely difficult to definitely say to the world – “this is IT!”
Although that is of course the hope and dream.
Following my long summer of 2017 spent almost totally flat in bed(or on my beautiful garden bed outside) I had a CT Myelogram scan mid September to try and locate my spinal CSF leak. Traumatically, the scan caused me to have an epileptic seizure and yet failed to evidence my leak. Such is the challenge of looking for these elusive leaks – 50% of which are never actually found. I was subsequently then left even worse off than I had been – hardly able to walk or be upright for more than a few minutes at a time. So I stayed in hospital and a week later I had a 40ml lumbar epidural blood patch (after the first one was aborted due to the needle going too far). Two days later it appeared that my headaches had shifted from low to intense rebound high-pressure headaches and I was finally discharged with the diuretic acetazolomide to help these new headaches.
High pressure headaches point to the fact the blood patch has probably worked – however the journey of trying to discern what is high or low pressure is not for the faint of heart.
In fact – over the next few weeks – it again almost completely floored me.
Over the following couple of months I was extremely unwell, even though I could be upright much more. This took its toll on my mental health as I struggled to work out what on earth was going on in my crazy body. One day I was sure it was rebound high pressure symptoms and the blood patch had worked – the next I was convinced it was still low pressure and that the treatment hadn’t worked. Day by day, week by week, the confusion and debilitation of severe neurological symptoms and pain – both upright and lying flat – and an inability to rest and sleep properly – took its toll on my mental health. Until I realised – if nothing changed quickly – that I was heading towards a second complete mental breakdown. (Like the one I had had a couple of months after my second epidural blood patch in November 2015).
When suicidal thoughts began to again abound – as I again convinced myself that I was probably still leaking and would maybe never get well – I knew I had to take radical steps to calm my terrifyingly restless and anxious thoughts and again find a way through the anxiety and confusion.
“A person who worries still thinks in some way that he can solve his own problem. Worry is the mind racing around trying to find a solution to its situation” – Joyce Meyer
The darkness of hopelessness and despair began to wash over me like a flood – mixed with the sheer exhaustion of three years of fighting and partially recovering and then relapsing again and again – and I was slowly beginning to feel like I was drowning again mentally and emotionally.
My legs were madly trying to tread water to keep my head above the waters – but some moments of some days I felt far too worn out to keep battling to stay afloat.
But what choice did I really have – right?!
There is no choice – because the only other choice is the unthinkable… and yet in the darkness you DO think the unthinkable. In the silence of pain and debilitation – your mind can end up in a scary place.
You just need it all to go away…you just need the pain and struggle to end…
You even sometimes naively wish what you had was terminal – because at least then there would be an end.
There needs to be an end.
There has to be an end.
How do you keep going, when you don’t know how long you have to endure? It’s the not knowing that feeds the anxiety, it’s the fears of getting worse that drain your depleted energy… and yet there is no escape.
You just need an escape…
But then you become consumed with guilt and shame for being so selfish to not only think – but at times dwell on such horrible things. Because if I love my family then I have to endure – because love never gives up!Right!? Unconditional love endures till the end.
…And yet how do you keep on going when you are utterly exhausted and at the end of yourself.
It’s a vicious cycle.
I even shouted at God on a few occasions to make it all stop because I couldn’t take any more of it. I told Him I wasn’t strong enough to keep on fighting. I was utterly worn out in every way – I pleaded with Him for no more pain, no more medical battles, no more clear scans, no more chaos in our life, no more crazy debilitating symptoms!
Shame was pulling me back down into its dark clutches. In my mind shame taunted me with the fact I was too weak, the fact I couldn’t cope, the fact I was chronically ill and couldn’t get well, the fact I had seizured after the CT Myelogram – so thought no one would do any more scans like that now to try and find the leak. The fact that I thought soon enough Doctors would give up on my difficult case.
I heard a voice within me screaming; ‘You can’t do this! You might as well give up! You will never get well – your worthless life will be full of this kind of pain for good. It won’t get better. It will only again get worse. Relapse is inevitable – and you will only go and muck up any healing again anyway!!
I HAD to still those relentless voices. I HAD to rediscover the voice of hope. I HAD to somehow find a way to discipline my restless mind. I HAD to trust God for the strength to somehow make it through.
“If you hear a voice within you say, ‘you cannot paint,’ then by all means paint and that voice will be silenced.” – Vincent Van Gogh
I had to find the voice of faith, unconditional love and abundant grace.
That still small voice that is always whispering to my heart telling me: You CAN do this and I AM is here helping you through.
I couldn’t do it alone. I needed Him to walk me through. I needed Him to talk me through.
I needed His voice. I needed to draw closer to His heart to hear His whispers. His words became my breath of life. His truths lit up the path ahead.
Moment by moment Day by day
I somehow made it through…
Even when it seemed impossible.
“You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you! Trust in the Lord always, for the Lord GOD is the eternal Rock.” -Isaiah 26:3-4 . The Bible.
Things began to settle down a bit a couple of months or so after my fourth blood patch and I began to discover that I could be upright more and walk further – little by little, week by week.
But I knew I had to protect any progress.
I needed to focus my mind and fix it on more hopeful things.
I knew I must use my thoughts to meditate on more calming concepts.
I had to shut down the multitude of voices that surrounded me and work on listening to the one I most needed.The voice that whispered, ‘be still’ in the midst of the raging storm. The only voice that had the power to break through the deep darkness that enveloped me, with the light of true abundant life. The voice singing songs of love over me – as He navigated my broken vessel through the raging seas.
And, …step by step… …hour by hour… ….day by day… …week by week…
I am finding my way into more and more peaceful waters.
Physically, mentally, emotionally and spiritually – calmer times have come.
I am not yet ‘back to normal’ – back to where I was before I fell that day in January 2015. And yet, I can be upright ALL day long without needing to lie down. Week by week I am growing in confidence in what I can do. Month by month my strength is building and my body is in less pain and is more fully relaxing.
I still have issues in my head. My Neurology Consultant and I agree that it seems to be a ‘hypersensitivity to higher pressure’ – so I still need a lot of calm and quiet in my days. I cannot rush about like I used to. Stress, raising my voice, singing, talking too much, bending, lifting, going to the loo – and similar things – all increase the pressure in my head.
But it is improving … slowly … and it is gradually heading in the right direction.
So that I can hope, believe and dream again – that one day I will be fully free from this horrendously debilitating condition. Free from the monster that has plagued the last three years of my life and attempted to rob far too much from our family. I still have to fight the fears of relapse – because that has been my very real experience so very many times.
But I HAVE learnt so much on this crazy recovery story – and those around me have learnt so much too.
Doctors are learning how better to treat this condition – because I chose to open up my life and to keep them informed. Patients are learning how to find a way through – because I chose to speak up, challenge misguided opinions about the condition and reach out amidst my pain. Christians are finding a way to endure seasons of great suffering – because by His grace I have somehow managed to wrestle through.
And one day – one fine and beautiful day to come – I hope that I can fully enjoy and embrace the wonder of hindsight.That in a time hopefully coming soon – I can stand on the mountain top and tell the world that I managed to just about endure and somehow made it through the pain. I have always known that that will be a glorious season – where I will shout, sing and share the tales of complete restoration and stunning redemption from the intense struggle. Where I can testify to how God brought our family all the way through.
But in the meantime…
….whilst things are still a little hazy and complete recovery is a dream not yet fully attained… I want to tell you of my gratitude.For life, love and breath in my lungs. For my amazing husband, my enduring children, my loving family, dear friends and wonderfully supportive church. I want to tell you about all the wonderful doctors and nurses that have helped me through – even when their understanding was so limited. I want to speak of my gratitude that I can currently be upright ALL day, that I can walk for miles whilst listening to music or inspiring words. That I can drive locally, go to the shops, visit friends, eat in a cafe and sit up in church.
I need to tell you that when you have tasted of utter debilitation, that being able to DO things again is a wonder to behold.
However, most of all I need to tell you about the fundamental thing that has brought me through.
He is known as Jehovah – the stunning three in one God – who so very many people don’t yet know. He is my light in the darkness. He is unconditional love in the midst of trial and sorrow. He is my undeserved grace when I completely fall apart and shout at Him in anger and despair. He is my comforter when I am distressed. He is the still small voice that sustains me. He is peace to my anxious thoughts. My fountain of life. My inner calm.
He is the way, the truth and the life.
But most of all I need to tell you that in and through His stunning grace – He carried me – on the days I never thought I would make it through. Sometimes through my husband, children, family and friends. Sometimes through a song or inspiring words that someone chose to share. Sometimes through the prayer offered up by someone who saw our pain. Sometimes through a whisper on the wind picked up when my heart and mind were finally still.
So I will ALWAYS hold fast to Him and listen to His songs of love – until that day comes when this beautiful scripture becomes my physical – as well as – my spiritual reality.
“My beloved spoke and said to me, “Arise, my darling, my beautiful one, come with me. See! The winter is past; the rains are over and gone. Flowers appear on the earth; the season of singing has come…” – Song of Songs 2:10-12. The Bible.
My dream is that one day I will sing again – with all the breath in my lungs – without it hurting my head.
And on that day I will sing a new song of never ending love from my soul, to the ONE who carries us through our deepest, darkest pain.
Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a complication of epidural blood patching.
This is a wonderful 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.
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.
Writing to explore what life is about. Amidst its captivating beauty and deepest pain. In the hope that we can learn, grow and be inspired together.
Becky Hill's Blog 