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 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.
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…
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.
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?”
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.
Regardless of which it is – today I just want us to try and understand one another better. Because if we can TRY to understand one another more, then perhaps we can work together to help your patients find more holistic healing and hopefully make your job a little easier too.
I decided to try and connect with your heart today, because I know that under all those important professional masks, doctor degrees, awards, uniforms, stethoscopes, fancy clothes and endless medical guidelines….
You are simply human like me.
Today, you might be my doctor and I might be your patient.
But perhaps yesterday, today or tomorrow we will equally face the same or similar challenges in our lives. The kind of personal difficulties and traumas every human faces at times. The types of trials and wrestlings that are simply common to our humanity, and a normal part of our broken world.
Maybe tomorrow you may even face the horrible illness I am facing today. Or perhaps one day you will find that one of your loved ones is in my ‘patient shoes’ – and someone else is in your own ‘doctor shoes’.
So please could we connect as equals – as human to human.
Rather than my inferior condition to your superior position. Or my entitled demanding to your service providing.
Please would you take a moment to humbly listen, as I attempt to open my heart to you today?
First, I need you to know some of my own story for you to understand me better. To know that I have been very unwell for nearly five years now. In January 2015 I fell off a small step ladder and that one moment changed my whole life. And from that moment I was catapulted into a life of constantly being someone’s patient.
… Maybe being your patient.
During that time I have met some wonderful doctors who were able to connect with me, listen, and who tried to help me as much as they could. I appreciate them more than they will ever know.
They were bright lights in immensely dark places.
But most of the time I have met doctors who didn’t really understand. And some who didn’t seem to even want to try. I met many doctors who treated me as another inconvenience in their very busy day. Another form to fill and box to tick. The nameless, faceless puzzle to try and solve that day.
You see dear doctor…
I have a condition that you may not know much about. And even if you think you do know a lot about it, if you spent a couple of hours in my home listening to me and my family you would probably find that you don’t know as much as you think you do about my complex case. Even many ‘top neurology specialists’ don’t truly understand my condition – even though many of them think they do.
And because of that, some of you have unknowingly added to my pain, giving me wound after wound that I am still healing from today.
You see, for the past five years I have been battling a spinal CSF leak.Perhaps you have heard a bit about them. Patients can get them after lumbar punctures, epidural anaesthetic injections or spinal surgery. Recently more doctors are realising that spinal fluid leaks resulting from these procedures are probably more common than previously recognised. The truth about their devastation seems, in the past, to have been hidden – mainly because many doctors only knew of the classic acute PDPH (post dural puncture headache) symptoms; they didn’t know that you can be leaking spinal fluid and not be stuck flat 24/7. It’s possible that you can be upright a lot of the day, but still be very, very ill. Experiencing all sorts of other horrible, debilitating, distressing, rarely recognised and widely misunderstood neurological symptoms.
I acquired my leak from that step ladder fall in January 2015. More of that original story is here if you want to learn. All my scans – until recently – failed to show IH (intracranial hypotension) or evidence of a leak in my spine.
Every single day since that ladder fall I have felt exceedingly unwell. I have not had one fully pain free day. I have not experienced a single day when my mind was clear and my brain worked like it used to.
I need you to know – dear doctor – that every day is a struggle for me. I have fluctuated between being bed ridden for months on end, to months of being upright all day.
And everything in between that as well.
But never well. Never normal. Never knowing the health I used to know.
I could never fully explain to you how impossible it has sometimes felt to live like this.
Recently – after more than four years – my UK NHS specialist team think they have located my CSF Leak in my cervical spine, a ventral leak, hidden at the back my dura on new MRIs. We are currently waiting for new scans to be read and reported to confirm and categorise the leak and work out a better way forward.
I was diagnosed with a suspected spinal CSF leak two months after my original fall. For a while they thought it was post-concussion syndrome – until I was finally admitted to hospital after my third trip to A&E. An understanding neurologist finally picked up on the fact my symptoms only went away lying down. Since then I have had 8 separate MRIs, a radionuclide cisternogram and a CT myelogram of my brain and spine. Until recently, they ALL failed to show any evidence of a spinal CSF leak at all.
Can you imagine how hard it is to be so very, very ill, but lack the vital evidence that definitively PROVES to you – dear doctor – that I am leaking CSF from my spine?
I know I am as ill, and sometimes even much worse, than some of those who have the scan evidence you want to see. And yet I know that some of you still doubt me, and I know that some of you still don’t think it’s all quite true.
Research shows that at least 25% of spinal CSF leak patients don’t show classic signs on their brain MRI. *
Medical papers show that around 50% of patients don’t show the leak on spinal MRIs.*
And yet I still often feel that I have to ‘prove’ to you how ill I really am.
That my lack of evidence is my own curse.
My own fault maybe?
I have been there with you. Lying flat in a hospital bed as you have towered over me, asking question after question, requiring me to prove myself to you. Like I am a criminal standing in your ‘doctors court’.
With you as the ‘self appointed judge’ over my medical destiny.
Do you know how deeply you have wounded me?
To be unbelievably and traumatically ill with a ‘apparently rare’ brain condition, and then find I also have to summon up energy (I don’t have) to ‘fight my case’ in your ‘doctors court’.
Challenging me to PROVE how ill I really am.
Do you know what damage that has done to me?
You probably have no idea how much it has affected me these past five years. How much it wears me down. How much it has infected my mental and emotional stability. How much shame I have had to carry.
Simply because in your busy, overwhelming, important – and often under-valued – job, some of you seem to have forgotten that your patients are simply human.
Just like you!
We share a fragile humanity.
I know that to some of you we are simply different diagnoses that come and go. Some more complex than others. Some that don’t quite fit the ‘diagnosis box’ you are trying to force us into. Simply ‘medical cases’ – charts, scans and notes – that walk into your busy world one day…
… never to be seen again.
Do you realise how much it messes with our heads?
The reason I am writing to you today is in the hope that somehow, I can re-connect with your human heart. Maybe – just maybe – we could get better at understanding one another again. So that we don’t have to end up with all of these painful misunderstandings and confrontations, which can sap your energy just as much as mine.
I know as patients we also need to realise that you are only human too.
That you are not ‘miraculous supernatural healers’ that can defy the laws of medicine, physics and nature. You are simply humans, trying your best to help other sick humans heal up and get well. Many of you wish you could do more for us – not less. You are bound up by the ‘system’ that controls you, by ‘modern medicine’ with all its exhausting bureaucracy, targets and restrictions. We know that there are those of you with equally broken hearts who wish you could offer us more than you do.
I am sorry that we sometimes forget that you are human as well. When we get lost in our own vulnerability, shame, pain and confusion and lash out at, and blame, you unfairly. I am sorry when we also fail to treat you with the kindness, compassion and gratitude that you deserve, as you work with systems that often overwhelm you and bring you crashing to your own exhausted knees.
But today, I can only speak from what I know. I can only try and share from the heart of a very broken patient, who knows that things really do need to change.
You are all overworked and overwhelmed in many ways. And yet some of you seem to be more connected to your own humanity than others. Some of you seem to know how to connect with your patients heart to heart. Some of you achieve this despite all the many challenges of your role.
So I want to say thank you. I know that you are the ones listening to me more openly today.
Recently I have been thinking more deeply about what ‘being a patient’ can feel like for us and how to try and help you understand more – dear doctor. Especially for those of us stuck lying completely flat in a hospital bed due to a spinal CSF leak.
But also asA VOICE for your many other patientsas I try to explain what it feels like for us to enter your normal vocational world.
You see, for you, the hospital is your workplace. For us, it’s often an immensely distressing place.
We are not normally there by choice, but because we know that there is no other way to get well than to come to you. So when we enter your ‘hospital work place’, we often feel so vulnerable, so confused, so distressed, so exposed, and often in so much pain.
One way to describe it to you is that we feel like we are metaphorically simply naked and exposed for you all to see.
You may not have ever been a deeply vulnerable and distressed patient yourself – so we know it’s hard for you to fully empathise and understand – but if you want to try and understand us better when you come to see us…
Can you take a moment to imagine and picture what it would feel like if it were you lying on that hospital bed, fully naked – so exposed, vulnerable and ashamed – with absolutely nothing to cover you up?
Our own masks, worldly titles, fancy clothes, make up, hairstyles and badges of honour have ALL been snatched or stolen away. So we are subsequently feeling so cold, so messy, so vulnerable, so distressed, so confused and so naked – whilst you are simply getting on with your daily grind in your normal place of work.
Please be kind to us. Please be patient with us. Please listen carefully to us. Please TRY to understand us.
Don’t stand at the foot of the bed and tower over your patient – she feels small already – take a minute, sit down, listen…Try to understand. Realise you will never understand. Try anyway.”
– C. Sebastian*
Dear doctor, we feel small already… please don’t make us feel even smaller.
In our smallness you can often appear so big, so important and so intimidating. You are covered in all your doctor masks, fancy doctor clothes, doctors badges and medals of honour, and talk with your important-sounding ‘doctor speak’.
Sometimes we don’t even understand what you are saying.
Because you are not talking to other doctors; you are talking to your naked patientwho already feels so very small and so very stupid lying down in that hospital bed.
Please listen carefully to us before you attack and accuse us of not feeling as ill as we say. Please open your minds to the fact that just because we don’t fit your boxes, it doesn’t mean we are not truly very, very sick.
You are meant to be our healers – not our accusers.
Dear doctor, you should know that after leaving your hospital or doctors office and perhaps never seeing you again, over the past five years I have experienced two intensely excruciating complete mental health collapses. I have also found myself close to those places again and again.
And in those places – normally when I completely relapse physically, I stop sleeping and have no energy to fight anymore – in those places, all of my traumatic memories of encounters with intimidating and insensitive doctors return to me. I picture you as scary ‘doctor-judges in the medical court’, and I don’t have the energy to try and ‘prove myself’ to you again, and face getting my case thrown out with the lack of suitable evidence.
So I want to just give up.
Dear doctor, did you know that in those dark and distressing places my broken and exhausted mind decides that death might be my only way out. The only escape from the constant battles. The only way to end the never-ending fight. The only way to stop having to defend and prove myself again and again to another intimidating ‘doctor-judge.’
Did you know that your insensitive words and actions one day could indirectly contribute to my death?
Do you realise how serious that is?
You see, when my impossible medical journey pushes me to places beyond what I can endure, when my mind packs in and my body breaks down due to the immense stress and strain of daily battling a debilitating and distressing misunderstood neurological illness year after year…
I end up feeling more broken, more vulnerable, more distressed, more naked and smaller and smaller than ever before.
I feel like a worthless and insignificant judged ‘chronically-ill’ nobody. Who just cannot get well. However hard I try.
Dear doctor, I then need you to know that I need you to see me as… Just another naked and vulnerable human patient…
…. looking for someone to help cover me up. Someone who can put a blanket of compassion, kindness and hope over me so that I won’t feel so very very cold, ashamed and completely overwhelmed from the fight.
I am your naked patient.
So please understand that in my nakedness, all I can see is all your importance, all your knowledge, all your intimidation, all your doubts about me and my case, all your intelligence and words I don’t always understand.
So you scare me!!!
I can no longer see your equal humanity; I can only see my naked inferiority beside your beautifully adorned superiority.
So dear doctor, please be gentle with me. I am not as strong as you think. My heart has been broken and wounded again and again. Some days I just think I will sink.
All I see is my broken humanity. All I see is my naked vulnerability.
So dear doctor, today I wanted to connect with your heart. I wanted to try and reach you, human to human.
As your equal.
To please ask you…
When I feel that naked, the best way to help me is to remember that underneath all of your adorned and celebrated doctor-robes, you are just a naked human too.You may not feel it so much today… or even tomorrow. You may not really ever understand what I am actually trying to say.
But please try and imagine yourself as that naked patient,lying in that hospital bed. And think about how you can move a little closer to our inflicted lowered level and status; to sit down, to listen, to try and understand…
Whilst realising you can never fully understand.
But please do TRY anyway.
Because one day…
That naked patient…
Might be you!
And then you will want to meet a kind and gentle doctor, who can also relate and connect to your vulnerable and exposed naked humanity.
And I hope that they will try to bring you more holistic healing…. Rather than inflicting wound after wound after wound... that can sometimes be even harder to heal from than the original condition over which you met.
Sent, with heartfelt tears, gratitude and deep respect for your willingness to listen and learn,
Your naked patient
“Don’t stand at the foot of the bed and tower over your patient – she feels small already – take a minute, sit down, listen…Try to understand. Realise you will never understand. Try anyway.” – C. Sebastian
*Quote from this beautifully insightful TED talk on encouraging ‘Narrative Humility’ in the medical profession. Narrative Humility: Sayantani DasGupta at TEDxSLC youtu.be/gZ3ucjmcZwY
*Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.
*Please also see this other in depth 2018 medical paper about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate disgnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.
“There is no greater agony than bearing an untold story inside of you.” – Maya Angelou
I started this blog at the start of January 2015. For a while I had wanted to write. But in all honesty I was scared.
“What if I write and nobody wants to read it?”
I soon learnt that writing isn’t just dependent on others reading it. It’s a great form of self expression in its own right. It’s the attempt the find the right words to tell our own stories about our lives.
One of the first momentous, yet deeply personal stories that I shared was the first anniversary of my Mums death in a post called ‘A Journey Through Grief and What I Have Learnt.’I had felt that in telling my own unique story, people might just connect and maybe they could relate as they struggled through their own story of grief.
Little did I know that the same week I started this blog and wrote the above piece, would be another life altering week for me.
That was the week that I sustained a brain/ spinal injury I am still battling now –
21 months later.
That day I was painting and needed to reach high up near the ceiling. So I used a relatively small step ladder to stand on, but it was resting in a place that wasn’t completely stable. I had already used it that way for hours and felt confident it was ‘stable enough.’
But my confidence was misplaced.
I took a seemingly small risk, the type that we all take everyday. But on this particular day my risk taking didn’t pay off. It was that day I had an accident. It was that moment where it felt like so much went wrong.
I have been living with the consequences of that decision ever since.
In one horrible moment the whole ladder had toppled over and took my feet from under me with it. I fell onto my back and hit the back of my head….
But, It’s OK! I am fine! A bit dazed! A bit bruised! No real damage done!
Or so I thought!!
So I finished that painting. Exhausted & aching all over, but obviously to be expected after painting all day and having a few bruises from the fall. But within 48 hours it became obvious,
I WAS DEFINITELY NOT OK!!!
Two days later I was diagnosed with a concussion.
“You should be better by next week.”they told me. But I wasn’t….It got WORSE!!
So we went down to A&E.
“I am sorry Mrs Hill you have Post Concussion Syndrome. You are looking at about an 8 week recovery time.”they said.
No surely, not me. Give it four weeks. It can’t be that bad. That is such a long time!!! (I confidently, yet naively thought!) I’m sure I can bounce back like any other time I have been ill for a few days.
Eight weeks later of being pretty much bed bound, in a dark and quiet room, and things still getting worse.
We head down to A&E for the third time since my fall.
I was finally admitted that time because I was so unwell, in severe pain and vomiting after being given morphine which didn’t touch the pain, only made me feel even more ill. I was finally seen by a Neurologist the next day and she moved me to their ward to look for evidence to support their initial diagnosis of low pressure headaches caused by a spinal CSF leak.
I am not going to list all my symptoms because I have done that all before. But what I will say here is that I am so very, very grateful to a handful of people who in the midst of their own pain and struggles decided to help others like me.
I have to tell you about the wonderful team at www.csfleak.info who helped me to understand more about my injury and helped me to realise that the fact I ONLY ever felt remotely well LYING FLAT IN BED for those two months, was not due to post-concussion syndrome after all,
It was probably due to a SPINAL CSF (Cerebrospinal Fluid)LEAK!
This meant that somehow the accident had caused a small tear in the membrane in the centre of my spine (the dura) that holds in your spinal fluid. This means that my spinal fluid leaks out and is absorbed my body.
So when I am upright sitting or standing, due to gravity, my brain drops in my skull, because it lacks enough fluid to hold it in place.
Twenty One months after my fall.
I am still not better!
I have had some ups and downs along the way. Bad months in 2015 of being almost fully bed-bound. And other months after epidural blood patches (I have had 3) of being mostly upright.
But since that fall I have never had one single day of being…
Fully Symptom Free.
Such is the journey to full healing with this unusual and often under-diagnosed condition. Many people do get diagnosed, receive treatment, get well quickly, and never look back.
But many others face constant battles, discouragements, set backs and difficulties throughout their journey of being diagnosed and treated. Often a lack of knowledge by the medical profession makes getting fully better hard for many.
Recently, I have become so acutely aware how little many doctors, and the general public, know about spinal CSF leaks. I have heard so many stories of people struggling to get a diagnosis and, even when they do, facing many barriers to treatment.
There are many hospitals that really don’t know what to do with ‘these rare patients’and this often makes delays in treatment an unfortunate reality for many.
I am so grateful for an amazingly supportive and well informed group of CSF leak sufferers who form an online community through the ingenious invention of Facebook groups. Many of us cannot imagine how we would have faced this journey without one another and I honestly think that some people in those UK and US based groups would not be alive today without that wonderful resource. Despair and suicidal thoughts are very prevalent within this group of patients.
Having someone tell you “I get it”whilst you both spend yet another day staring at the ceiling, flat in bed, can mean everything to someone really struggling. Even when that other person is half way across the country or even the world.
We face the daily struggles together!
It can be a lonely and difficult road battling a chronic illness. That road sometimes feels impossible when you slowly begin to realise how little knowledge a lot of doctors have about your condition.
I recently watched a very moving video, that is on the wonderful US spinal CSF leaks charity website. www.spinalcsfleak.org/resources/patient-stories/ About a lady who got a spinal fluid leak from a very badly placed epidural for the birth of her second child. She got two dural tears from the needle which caused spinal fluid to leak from her spine.
It took her 2 1/2 years to recover (she had a new born and 4 year old at that time) and she had to have 11 epidural blood patches (where they inject your own blood into the epidural space in your spine) and two surgeries to get better.
But what struck me the most was that even though everyone knew the area of her spine the leak would have been in (which is half the battle with traumatic (or spontaneous) leaks like mine) time and time again doctors refused to listen and often implied that there is no way she could be leaking CSF, and perhaps it was instead, ‘all in her head’ or something she would ‘just have to live with’.
I cried so much watching it because myself and many other leakers have faced similar battles to hers.
I find it heart breaking when people are suffering and needing help and support. And yet due to a lack of knowledge and understanding by the medical profession AND the general public, people are often told things like;
‘We have got nothing left to offer you,’ ‘Try your best to get on with your life’ ‘Perhaps you should try and get out more.’
Which is just a slap in the face when you are literally stuck lying flat in bed!
And yet, it doesn’t need to be that way!
There has been so much research done about spinal CSF leaks already. There IS knowledge out there. There are specialists who are leading the way, publishing medical papers and providing hope that many people CAN fully recover and perhaps don’t have to just learn to live with it after all.
Peoples minds need to be opened.
Medical professionals need to know that there is more information out there than they might realise. That there are a whole range of diverse symptoms. That people can still be leaking and debilitated, yet still function (well sort of) upright most of day. That there are many different kinds of treatments available and things that can be done to help.
Recently I have been thinking; how I can spread awareness?
How can I do my bit to help make the way clearer for those patients coming after me?
What skills can I offer the cause that might make a difference for both me and others?
One thing I have chosen to do is write. I can use my words to draw attention to this condition. I can tell my story in the hope it eventually reaches the people who need to hear it.
“Well, everybody’s got a story to tell and everybody’s got a wound to be healed.”– Plumb
So today that’s what I want to do. I want to welcome you in to my world. I want to share with you a snap shot of what it is like living with a chronic CSF leak. So that you might have some more understanding yourself.
These days I am so very thankful that I get more hours upright than I used to. It really does make it that much easier to deal with. It helps me to feel more a part of the world around me and connect better with my kids. But it is still very very hard and debilitating to live like this.
Here is a typical start to my day….
I got up about 7:30am this morning. Lying in bed in the mornings I can actually feel pretty normal. But that feeling never lasts for long!
I get up, shower, get dressed and have breakfast, including a cup of tea and 2 pro plus caffeine tablets (because I can’t stand coffee!!) – which can help to give me a bit more up time (although I often find it can be an artificial type boost feeling). During this time I already feel the neck stiffness and occipital (bottom back of the head) pain beginning to build up, but it’s manageable and relatively mild.
I drive part way and then walk my youngest to school. Chat to the other parents/ carers, go back to the car. Then this morning I decided I would pop to the shops.
My head is getting worse bit by bit, the pressure is building, the pain in my neck/ occipital region is increasing and my head is beginning to feel more full and a little cloudy.
I go into the supermarket – only to get a few things so it’s not too heavy. I don’t use trolleys, I don’t use a basket. I don’t take a handbag – only my purse – so that I can get as many things as possible and carry them without making my symptoms much worse.
So depending on what I have that might be 4-8 lightish items that I can hold in my hands/ arms without dropping them. If I do drop one of them (like the other day), I have to leave it or ask a shop keeper to pick it up for me. (Because bending down might make my leak, and will certainly make my symptoms, worse. At home I use a grabbing stick like the one below).
The nausea is setting in.
I pay for them on the self service check-out which is at an awkward angle so you have to bend a little to put them on the counter once scanned.
This increases my symptoms.
I bag them up and pay and by this point – just carrying the weight of those few things is making the nausea worse, so I start gagging in the lift to the car park, feeling like I want to vomit (although I don’t think I am ever fully sick).
Thankfully there is no one else in the lift with me!
I drive the short distance home – put the things away. Talk to my husband while he’s making a cup of tea (he is working from home today). During our conversation my head and neck is getting worse (I feel like someone has whacked me round the back of my head with a baseball bat!!) and I start gagging again uncontrollably – but thankfully I don’t actually vomit.
So my husband says, “you’d better go and lie down.”
I walk up the stairs and can feel my legs beginning to get very weak, I have to think about the steps I am taking, willing my legs to keep moving. The cloud in my head thickens. That feeling of not being able to cope with the intensity in my head floods over me!
It’s 9:30am – I have been up two hours and can no longer function upright!!
I am now lying down flat in bed – feeling a lot better and writing this. I will stay here for probably an hour or two before getting up again to do some more jobs at home for maybe half an hour to an hour before the same thing happens and I have to lie down flat again.
That’s how it goes throughout the day – every day – although later on in the day the up times are often less and the down timescan get longer.
If you saw me at the school at 8:30am, even though I had symptoms, you would think I looked fine, chatting to people (which is great because some days I don’t get to see many people).
So this is me on a good day – last year during my worst times the above would all happen with my symptoms within about 10mins of being upright.
I couldn’t even have a shower.
I would have a shallow bath once a week which I would have to lie completely flat in. As soon as I got out I would have lie on the bed with a towel round me, with my wet hair on a towel. It would take at least 1/2 hour to 1 hour before I might manage to be upright enough to put some clothes on and dry my hair a bit with the hairdryer. Or often my husband would help try and dry it whilst I lay flat.
When I was in hospital, a year ago, waiting and battling for more treatment (a second epidural blood patch) – I was in a bad way. I would spend all day lying in a head tilted down bed to alleviate symptoms and keep my brain in the place it should be. I could only manage about 5-10 mins upright at a time which makes things very hard.
We were facing lots of barriers and delays at that time (which I write about here), because the anaesthetists didn’t want to blood patch me a second time (after 5 much better months following the first) they instead wanted me to try an occipital nerve block done by the pain management team. (I did have the nerve block, it didn’t work at all, but it did leave my head, neck and hair covered in the sterile cleaning stuff.) Following that it took me two whole days to find the strength to get my husband to take me into the shower in the hospital bathroom so that he could help me wash all the chemicals from my hair and neck and help me get changed. He then dried it with a hair dryer whilst I lay flat again. (That would pretty much do me in for the whole day!!)
It’s an utterly debilitating condition.It’s not good for anyone’s physical and mental health to have to lie flat in bed all day. And yet some people are left that way, long term, because doctors don’t know what to do with them. They don’t understand how to treat them.
They do not seem to realise how impossible it is to live like that!
People are just not aware that many spinal CSF leak patients end up feeling suicidal (as I did at Christmas and write about here) because of the physical and psychological toll of the condition. Which is often exacerbated by the battles to find doctors who understand the condition, show compassion and actually do their best to help you.
There can still be an ‘old school’ mentality at large in the medical profession, even following correct diagnosis, of trying one epidural blood patch (and sometimes not even one) but if it fails to fully get you well, then they recommend that they should just try to help you manage the pain.
‘Manage the pain?’
I don’t have a sore leg, or a mild headache that goes away with some pills or a even a worse headache and stiff neck that is solved through a nerve block.
My brain drops in my skull when I am upright, wreaking all sorts of havoc in my head and body until I literally can’t physically or mentally cope. You can’t just ‘manage’ that kind of pain. And actually I wouldn’t always describe it as ‘pain’ – it doesn’t do it justice. It is an intensity that can actually only be described as a sensation that is ‘beyond pain.’
(And just to add here that no painkiller I have had (Including IV morphine) has ever touched it)!
IT’S REAL! IT’S HORRIBLE! IT’S DEBILITATING! BUT – IT IS TREATABLE!
Things ARE changing, patients are speaking out and coming together as a force to challenge conventional thinking about CSF leaks. And thankfully, little by little there are more wonderful doctors who are meeting enough well informed leak patients to see how great their suffering is and are slowly beginning to offer them new opportunities for diagnosis and treatment.
When someone with a leak meets a doctor who understands, or at least tries to understand, it’s truly a beautiful thing. It honestly means so very much to us.
Those doctors will never be forgotten.
We don’t expect miracle workers. We know we may not be easily fixable. But to meet someone with a willingness to try, an ear to listen, a humility to learn and a compassionate heart can make all the difference to someone on such a difficult road.
In February this year (2016) a video was posted on You Tube that is doing so much to help change people’s minds and hearts about spinal CSF leaks. In the video Professor Ian Carroll from Stanford University Hospital in the U.S. gives a passionate lecture in which he is trying to enlist the help of doctors and medical professionals to help find and treat those suffering from spinal CSF leaks.
Through this video Dr Carroll has become our spokesperson, bravely, boldly & passionately challenging conventional thinking in the medical profession at large. And joining others in the quest to change current practice and stop people suffering unnecessarily from a mainly treatable condition.
I know for me, and many other longer term suffers, Dr Carroll’s video on YouTube is a breath of fresh air that reminds us that we are not going completely mad. So many patients have taken great hope through the impact it, and other recent information, is slowly having on awareness, diagnosis & treatment of spinal CSF leaks.
I am so very grateful for this wonderful resource from a doctor who is wanting to reach both doctors AND patients. I have gratefully been able to share this resource with some of the many doctors who have cared for me over the last 21 months. Some who have gone to great lengths to understand the condition more and do their best to support and treat me.
It is always a special moment when you meet a doctor who does watch the video or reads though the websites. People’s hearts and minds CAN be changed and it is wonderful when you see that happening.
Change does not often happen instantly. We are not all going to wake up tomorrow in a world where every person with a spinal fluid leak is going to get properly diagnosed, treated and fully recover. These conditions are complex and it takes time for understanding, research and practice to filter through.
But we can all play our part!
So today I want to ask sufferers and their families to think about;
How could you speak up and tell your story?
How can you be part of raising awareness too?
We might not all be able to write blogs, create websites, volunteer for the charities, fund raise or spread the word on the street. But perhaps we could post on social media, share a link, wear a t-shirt, or tell something of our own story.
Or perhaps you could respectfully share with a medical professional a medical paper on leaks, tell them about the UK and US CSF leak charity websites, or send them a link to Dr Carroll’s video.
You never know, they might just take a look –especially if you approach it well.
“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” – Mother Teresa
Change will only come; little by little, step by step, patient by patient, doctor by doctor, hospital by hospital.
By individuals and groups choosing to raise awareness and helping to challenge and transform conventional perspectives and opinions.
Perhaps we can all work together to enable patient and doctor to compassionately help one another to understand this debilitating yet treatable condition. So that even if we have had a tough and difficult journey ourselves, we can seek to build bridges with others that can open lines of communication. That might just change people’s hearts and minds for the future.
That way, we are building a legacy for the future. We are making the road that bit clearer for those following behind.
Mindful of the fact that they may never fully know the difficulty, struggles, sacrifices and battles of those who went before.
“Do not go where the path may lead, go instead where there is no path and leave a trail.” -Ralph Waldo Emerson
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, misunderstanding and great distress on my already immensely long winded and difficult medical journey.
Please also see this other in depth 2018 medical paper about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate diagnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.
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.