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.
A few months ago, I was again immersed in the intense and dark storm of a traumatic spinal CSF leak symptom relapse – which also triggered the major mental health crisis I wrote about here. Part of my turmoil included the sense of feeling completely worthless.
Being perpetually stuck in bed with very distressing neurological symptoms often means you feel like your life has so little worth, value or purpose. Especially when you see most other people around you getting on with their seemingly important, full and valuable lives.
Feeling ‘purposeless’ amidst suffering and chronic pain really negatively impacts your mental health. Because when you feel like your life has no purpose, you simply feel burdensome to those having to care for you, and to the world in general.
In that crushing darkness I was immersed in, I just couldn’t see how my life could bless and help others. I just felt like I was, and would always be, a negative influence and drain on others. I even felt like deleting this whole blog, and my all of my public writing, because I decided that stories without happy endings are just depressing. If I cannot offer hope to those suffering then my writing may just discourage those already unwell and spread negativity rather than positivity. I thought to myself: what’s the point of me telling my sad story when the world is just full of sad stories?
In the end, I compromised and managed to just privatise this blog for a few weeks – until my perspective began to get a bit more healthy and balanced again.
However, as time went on – and the sun slowly began to break through the dark clouds – I realised that my mind had again got lost in the LIE often peddled in this world that ….
What you DO is far more important than who you ARE!
The lie that subtly tells us each day that if I can’t actually DO anything then my life is surely worthless?! I am just a chronically (and at times mentally ill) ‘insignificant nobody’ who is struggling to find the energy to live and breath, let alone have the energy or capacity to make a difference in the lives of my immediate loved ones – or the world in general.
“Experience is not what happens to you. It is what you do with what happens to you. Don’t waste your pain; use it to help others.”
Rick Warren, The Purpose Driven Life
Why do we so often fall for that ageless deception – that we only truly ARE what we DO?!
“What do you do?” everyone asks you when you first meet. “What do you do?” the doctors ask when they first see you – as if knowing such things means that they can now interpret your ‘medical story’ through the bias of what title the world has given you.
Those few ‘what do you do’ words often unknowingly heap shame on those of us in Western society now unable to DO as we used to.
The fact that we don’t, or can no longer, wear societies ‘badges of honour’ (its job and career titles) – perhaps because of immensely difficult seasons of debilitating illness or disability or other challenging seasons in our life – suddenly means that we become insignificant second rate citizens of the world.
When I get lost in such lies, it cripples me. Shame consumes me. I lose track of my identity. I feel completely lost and not sure where to anchor myself so as to move forward.
But as my perspective begins to improve one of the first things I begin to SEE is that I have again got deceived into believing a lie.
Slowly I can SEE again that I instead need to connect with the deeper truth of this universe, that is…
I am not what I DO!
I am still Becky Hill – whether I can be busy DOing a certain job or task, or if I can only lie in bed and look for ways to find purpose in the midst of all my pain and restrictions.
It was at that time and in that place of deep wrestling that one day I was sharing what I like to describe as a ‘Psalms type prayer of lament’ to God. I was crying out to Him, overwhelmed by the feeling that I didn’t have a purpose anymore. I was just so restricted by my physical condition that I was questioning what the point of me being alive was. If my life is simply about existing and enduring the pain, then is it really worth living??
And in that moment I felt God reply to me so clearly through the peaceful gentle whisper of His Spirit to mine…
“Precious child – your purpose is to daily ask yourself, “who can I show LOVE to today?”
It immediately EXPLODED in my heart!
It was so simple – yet the revelation so profound…
God wanted me to get the focus off of me and ask Him for creative ideas to show love to others – DESPITE my pain and limitations. He was telling me that even though, at that point, I was stuck in bed most of the day … I could still choose to love others from that place.
Those words from God that day resonated with and reminded me more deeply of the truth I already knew and lived by – that LOVE is only love when it is given and offered sacrificially. In the same way Jesus gave His life to love mankind by dying for our brokenness, we also need to be inspired by his example – by daily looking for ways to love others sacrificially too.
However, the key thing God continued to show me in that moment which has powerfully stayed with me ever since… is that the acts of love didn’t have to be BIG things. I just had to love as much as I could through the small things I could do. It was at this point the sign in the photo that we have hanging in our hall became a deeper revelation which has become my fundamental purpose for living…
DO SMALL THINGS WITH GREAT LOVE!
It’s so very simple and yet so deeply profound.
DO ORDINARY THINGS WITH EXTRAORDINARY LOVE!
It doesn’t matter how small or how ordinary what you have to offer is.
What matters is the amount of love you offer it with.
It doesn’t actually really matter how BIG or extraordinary your job title is! What matters is how much love you do all the small and ordinary things in that job and the rest of your life with.
In that way the standard is equalised for all.
Our purpose is always the same.
No one has a more significant purpose than others.
So if today I can only hang some washing on the line, send a couple of empathetic messages to other people struggling and order some shopping for my family online – I can do it all with as much love as I can. I can serve others with a sacrificial heart. Which means the pain invested in the small things causes the love shown to be even greater.
So those words “who can I show love to today” have become the habitual daily question of my heart. Those few words – “do small things with great love” – have helped me immensely in walking through what seemed like an impossible time I couldn’t endure.
When I would wake up in the morning on those days and the dark reality of the struggle ahead would hit me like a ton of bricks, I would try toacceptwhere I was – grievemy limitations – and then change my focus to ask God – ‘please show me who I can love with small acts of love and kindness today.’ In that place I tried to be mindful of others who were finding life challenging and think of how I could encourage them. I would look for very small jobs that I could do at home and try and pour my love for my family out through them. If I was shopping online – or later could go to the shops – I would try and think of who I could buy a special gift or card for.
And slowly…but surely…that sense of PURPOSE – EVEN AMIDST PAIN – was restored to me.
Because I again discovered that being alive meant that someone else could be loved, served, encouraged and blessed today.
It took the focus off me and my problems…
And shifted my gaze and contemplation onto His sacrificial LOVE flowing through me.
And the more I loved.
The more I felt His love.
So the more love I then had to give.
“The greatest thing about helping other people is for the moment you forget about yourself.”
I again discovered that the giving and receiving of true love is probably one of the best medicines to help sooth the pain. It is certainly the highest and most significant calling of our lives.
So today I decided to share my story with you again – to tell you with great love to never forget…
That despite your chronic pain, despite all of the debilitation, despite your current disabilities and limitations, despite all of the restrictions you seem to be facing…
There is still a much greater purpose for you.
Please don’t lose sight of that like I did. The truth is – there is still so much to live for. There are things that only you can do. There are words and tasks that only you will be able to see need doing, or saying, that may be able to connect with and encourage someone else really struggling.
So choose to love daily.
Choose love as the highest purpose of your life.
And whoever you are – whatever worldly title you do or don’t have – whether you feel important or insignificant – try to simply do…
Small things with great love.
That way, the world will shine a little bit brighter because you are still in it. Which is so important to both us, and others, who seem to be constantly stuck in a cycle of – at times – overwhelming darkness, brokenness and pain.
As I write these words today and try to infuse them with as much love as I can, I hope that you will today truly SEE how extraordinary you can be – IF you will just do and say ordinary things with extraordinary love.
Whilst knowing how much greater that love is – when it is given with the deep sacrifice of your ongoing pain.
“I was broken so that I may understand the broken, so that I may reach out to the hurting, and comfort the wounded. I have the capacity to bring hope and love and healing. A once fractured mirror finding new purpose, because I am no longer reflecting myself, I’m reflecting Him. This is my reason for living. This is why I was created.”
“I remember the wild agony of no way out and how the stars looked, endless and forever, and your mind can feel like it’s burning up at all the edges and there’s never going to be any way to stop the flame.”
Only those who have experienced the trauma of a suicidal mind can truly understand how agonisingly dangerous it is.
We usually do the upmost in our lives to avoid things that might kill or harm us. But when it is your mind trying to kill and harm itself – it can feel impossible to get away from. It takes you hostage, binding you up with all its lies and accusations, torturing you inside your own head, home and life.
Refusing to let you go.
If only I could explain to you what it feels like…
I used to assume that I would never think that way. That life couldn’t get that bad for me. That I couldn’t be that selfish. I assumed that my ‘superior’ coping mechanisms could surely carry me through any storm that came my way.
Until life took me through seasons when I truly felt ….“the wild agony of no way out…”
At the end of April this year I dramatically relapsed in my spinal CSF leak and arachnoiditis symptoms…AGAIN!! After eighteen months of clear improvement since my last epidural blood patch. Everything came crashing down again physically and mentally.
And I found I had absolutely NOTHING left to fight with.
I had completely burnt myself out physically, mentally, emotionally and spiritually from fighting this horrible condition and all the misunderstanding’s surrounding it – for so long.
I ended up stuck in bed nearly all – day and night – in almost perpetual intense, agonising pain. Everything simply exploded symptom wise and it felt like I was getting every type of headache and nerve pain in my spine you can get on top of the ‘low pressure’ issues. It was non-stop, non-positional pain, and made worse by the fact I was hardly sleeping at all.
I am only now beginning to feel more ready to talk about what happened back then more openly. Rather than just wanting to hide from the world and not speak up.
It’s only crippling shame that tries to keep me silent.
But as I get increasingly well, I know that part of my healing and restoration comes in being able to talk more openly about how bad things were. I know that the only way to deal with shame is to speak it out. So as to process my own journey and also to connect with others’ suffering and struggling, as well as to help others to understand more.
So here’s some more of the brutal and raw truth about the traumatic wrestlings of a suicidal mind. At the time, I wrote some poetry in my iPhone notes. I guess to try and process my thoughts and explain to others how it felt. I did show these to my husband at the time which he appreciated – even though they were often painful for him to read.
This Pain in My Head
I am going mad This pain in my head Persists and won’t go away It’s killing me slowly Polluting my life Stealing everything away
What do you do When you are Drowning?
I am drowning – can you see? My head keeps sinking below the surface. My legs furiously attempting to keep my head above the waves. I have no strength left to fight. My legs are growing so tired. My mind just won’t stop whirring. The pain won’t let me go.
I am suffocating – can’t you see? Where life is being squeezed out of me. My energy leaving me, my endurance gone. My life just a shadow of what it once was.
I am in inner & outer torment – can you see? The pain and debilitation slowly taking over all I am. Like gangrene it eats away at me. Stealing my life, my strength, my hope
I love you all so much – can you see? I am devastated by just what may be. To think of your tears, your cries, your heartbreak and pain. To think of destruction eating away at your hearts. To think of the backlash and the battle. To think of all the awful desolation left behind.
How could I? How can I?
What am I supposed to do? Do I keep existing or allow the waves to take me where they will.
So the battle rages and I sink yet deeper still into the darkness. The pit of despair – a place that won’t let you go. Destruction all around me. Devastation following. Despair keeps on calling my name.
I am stuck in the pain and anguish of living here. Trying to love here… Trying to suffer well… Trying to hold on… Trying to clutch on to life… Trying to not let go…
But losing… I am losing… I am losing…
I don’t want to be lost But devastation is calling my name.
The Torment of Pain
Pain torments you it pulls, pushes & wrestles with your mind Persistent pain consumes you until nothing else is left It eats you alive leaving your flesh exposed Infection after infection ravages your thinking Mind constantly infected Tormented Trying to hold on Trying Trying Trying to hold on Gasping Reaching Clutching By my finger nails Trying to hold on
How Long am I Supposed to Endure?
How long am I supposed to endure? She asked, writhing around in pain How long do I need to exist in this for She asked, living as if death was life
They tried to understand but still couldn’t see the pain that never went away. The torture of not knowing how long to endure Was stealing her whole life away
The problem was she could no longer see a future any better than this She tried and she tried to hold on for love But the pain was pulling her to defeat
Many would question the size of her love The fact she could not endure or remain But that is because they never lived in her body And never kept on feeling her pain
Somehow reading them as separate poems doesn’t quite do justice to the intensity of the trauma that takes over your mind when you are backed into the ‘corner of dark shadows’ that is suicidal ideation.
Your mind is completely out of control.
You can no longer think rationally. It’s just a massive ball of dark, oppressive and negative thoughts crippling your perspective and adding to your intense internal and external agony.
I still felt so much love and love was actually my only anchor and light. But love was often even painful to feel, because you think that if you really loved others – that much – you should be able to endure and remain.
But you don’t have any energy to remain anymore.
And as dark as dark can be.
….And I was hardly sleeping at all. So there was no relief.
That’s why it’s called ‘mental illness’ – because you are extremely unwell.
And you just can’t ‘snap out of it’. Or just ‘think positive thoughts’. Or ‘reign in your thoughts’. Or simply ‘change your perspective’.
You no longer have that ability.
Your mind is no longer your own.
Without the love, compassion, support and care of my amazing husband, family, church family, friends and doctors, I am not sure I would have made it through.
It still scares me to know first hand what a vulnerable and dangerously over stretched mind can end up like.
But I do know talking openly about it shows how far I have come since then. To know that I was simply very very sick – both physically and mentally. It breaks my heart to know that others are facing this same battle – in similar and very different ways – each and every day.
Unless we can try to listen and understand more what goes on the the mind of someone feeling suicidal, we won’t be able to help them overcome the immense stigma, shame, misunderstandings and trauma of that experience. We need to know how to best try and help ourselves when we find ourselves there. As well as helping those stuck in the oppressive prison of a mind on the edge of suicide.
So that’s why I am opening up my own immensely humbling experience again. To let another struggling soul know today that you are not alone. I have been there and I want you to know…
It can get better again.
I know you can’t see it – yet.
I couldn’t either.
I only felt the ‘agony of no way out.’
But one day the sun did again begin to break through the clouds. And I began to walk out.
Albeit bruised, battered, burned, startled and scared from the fight. But I made it through again. So please just keep putting one foot in front of the other.
Just hold on a little bit longer.
Allow someone else to walk through it with you.
And then get strong enough to share your story. Because it might help to reach and save another struggling soul too.
“I wanted the brave to speak up, to speak the Truth and Love: Shame is a bully and Grace is a shield. You are safe here. To write it on walls and on arms and right across wounds: “No Shame. No Fear. No Hiding. Always safe for the suffering here...” If we only knew what fire every person is facing — there isn’t one person we wouldn’t help fight their fire with the heat ofa greater love.”
“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.
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.
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
Please do comment or ask any questions below. Or alternatively you can email me at email@example.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.
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.
“True hope is honest. It allows a person to believe that even when she falls down and the worst has happened, still she has not reached the end of the road. She can stand up and continue.” – Philip Yancey
I’ve now been on the roller coaster of chronic illness and pain (with a spinal CSF Leak) for nearly 2 1/2 years. During that time I have been almost fully bed bound for months at a time, then for many other months I have been able to live a part normal life where I can be upright enough hours to get the basics done at least.
I have not had one day feeling fully well for those 2 1/2 years.
It’s been tough!
I can hardly remember what it feels like to feel healthy or live normally. To be able to make plans trusting I can go through with them. To not be on this daily treadmill of dealing with the multitude of restrictions and limitations. Whilst simultaneously having to be extremely patient, letting go of what I can’t change and trying my best to stay thankful for all the good parts of life too.
Following about a year of slightly more manageable symptoms. Last week I tripped and fell flat onto the pavement, and within 24 hours of that fall it became obvious that the very minor accident had caused a complete relapse of my CSF Leak symptoms, leaving me again stuck in bed/ lying fully flat for over 22 hours a day.
And it’s honestly so disappointing. Going backwards again instead of forwards. To again be struck by the full force of this cruel condition.
The roller coaster is exhausting. It can take months and months to see any improvement in this condition then in one moment, in one misplaced step….
I am back to where I started.
And it is honestly wearing me out!
These are the words I wrote a day after the new fall, as it became clear that I was facing another big symptom relapse….
Every time I face a setback my heart sinks. Every time I get worse again, I remember how good I had it last week when I was slightly better. Every time I want to give up, I know I can’t, I have no choice but to keep on going. Every time I want to sob and sob, to let it all out, but soon realise I shouldn’t because it will only make my symptoms worse. Every time I picture the life I can’t live and have to let it go again. Every time I hope for better days but worse days come instead. Every time it tortures my motherhood that I can’t be the Mum I want to be. Every time I can’t help my husband look after our home or do everything I want to for and with my children. Every time my body rebelsand forces me to have get flat again before it completely shuts down.
Every day I have to pick myself up, dust myself down and choose to keep on fighting another day.
Sometimes I get weary.
Sometimes it feels like I have nothing left to give.
Sometimes I wonder if I am really strong enough.
But what else can I do but get up and keep on going? Hoping and believing that one day things will again be better than they are now. And that I will one day be able to access the medical care I need to help me get better.
That is what I wrote last weekend as I faced the consequences and hard reality of that fall. They were the feelings and thoughts that bombarded me last week. They were the things I had to face but then let go of.
It’s really not easy to be back here again!
“Pain is no evil, unless it conquers us.” – Charles Kingsley
And yet something is different this time. Those thoughts and feelings didn’t plague me for as long. I have realised that within me I have reached a place of deeper freedom. The journey I have been on for over 2 years has taught me so much and made me so much stronger, whilst simultaneously being more aware of my weakness.
As the condition has beaten me down yet again, I have felt a deeper resilience rise up from the inside – despite it all. A deeper peace to keep on letting go.
I almost feel a shout within me of ‘come on then, bring it on!’
A battle cry that I will not give in, I will still keep living here.
An act of throwing off the burdens and obstacles coming against me. A determination to make the best of things that I can.
So that is what I am choosing to do. However long this cruel condition keeps knocking me flat. However much it tries to mould my life around its limited perspective. However much it tries to feed me with despair and taunt me with the life I could be living.
However much it tries to bind me up in it’s web of disability, restrictions and chronic pain.
I have to decide that I will not let it rob me of who I really am and who I am really meant to be.
If being Becky Hill means working with this rather than wearing myself out trying to constantly fight it, then I must work with it for as long as I have to. Looking for the opportunities, rather than focusing on the limitations, seeing the beauty still around me, even in those moments it feels unbelievably hard. Because….
if I cannot live here, then how can I ever ask anyone else to live through their own very challenging season either?
if I cannot find a life amidst all the restrictions, then how can I teach my children to do the same?
if I give up the fight then how can I encourage and draw out resilience in others?
if I cannot find joy in the midst of suffering then does my spirituality mean anything to me?
if I cannot love deeply and see outside of my self, even where there is pain, have I even found true love at all?
So seeing as I have relapsed again as we head into summer, we made our own declaration to this debilitating condition. We brought a garden sun bed that goes completely flat so that if I have to spend my days lying flat, I can do that outside as well. Amidst the garden, the sun, the natural world, the cool breeze and the birds singing their wonderful distinctive songs.
So I will play card games with my family outside whilst lying flat, I will keep sharing my heart with my husband, I will ask my kids all about their days. I will continue to write, I will read books that inspire me, I will try to connect with and encourage others with my words. I will listen, learn, grow and change. I will enjoy the presence of God and allow Him to touch and change me from deep in my soul.
This condition has and will change me, that is inevitable. But I am determined for it to be only for the better. Because I will not let my spinal CSF leak completely devastate mine and my families life. I will not let negativity overshadow our love for one another. I will not let it steal my peace, love and joy. I will not let it take me down and pull me into the never ending pit of despair.
Instead I will rise up from deep within and find a way to live with all the restrictions, to enjoy the simplicity of life, to appreciate everything I do have and can do, and love everyone I can with all my heart.
“Pain is inevitable, but misery is optional!” – Andre Olivier
So it’s true: last week I tripped, fell and relapsed yet again. But last week I also chose a better way forward. I cried, I faced the pain and loss, I recognised the challenges ahead. I am not in denial, I am more aware than ever about how difficult this will be. There is never a simple way forward in this relentless CSF Leak game.
But after falling I had to get up again. I had to choose to live my life with even more determination and resolve. I had to make a decision…. to not give this condition permission to destroy my life.
Instead I must use it to build more resilience, increase my compassion and help me feel another’s pain. Use it to embrace time to write, read, learn and inspire. To declare that we can still have a life even when so much is stolen. We can still have purpose even when we are mainly stuck in bed.
So let me learn to endure this trial for as long as I have to. Let me find a way to tell another …. ‘yes this really is so so tough – but it can be done, we can find ways to live life like this.’ So let me choose to let go of the life I thought I should live and embrace the life I am currently living and give all I’ve got to truly living here.
Let my heart be moved and my mind be transformed until – rather than complaining – I can sing a new song of thankfulness and joy. Rather than focusing on all that’s lost, I will see all that can be gained. Rather than pulling others into my despair with me, I can choose to love and encourage others even in the midst of my and their pain.
It’s then that purpose can still be found in suffering. It might not be the purpose we envisioned for our life, or the path we would have chosen for ourselves or our family. But this is the life we currently have. So with a deeper resolve and a new patient resilience I will declare that I am finding a way to do this. We, as a family are finding a way to do this.
For as long as this journey takes.
I may not be able to do much. But I still have my work-in-progress story that is being written. It’s taken me on a tangent I never envisioned or imagined. But it’s still my story. Although I cannot control every part of my story I am the greatest contributor to the style in which it is being written, formed and shared.
So let me write the best story I can. The real story. A story of strength in weakness and love conquering all. So I can keep encouraging you to keep writing your best story too.
“Our story is what we have to offer the world…. I wish I had a different story than the one I just lived through, but I am so grateful for the story that has made me who I am today. Even the pain. Even the wounds. The sadness was real. The brokenness deep. The scars mine. It’s my story. It’s who I am. It’s how I’m becoming.” – Erwin McManus (The Artisan Soul).
This is my story!
It’s my story of who I am. It’s my story of who I am becoming. But it’s definitely a work-in-progress. I wonder how the book of my life will unfold? I wonder what it will all become in the end?
It was a journey of realisation and revelation following researching and contemplating what SHAME actually is and how damaging it can be in our lives. I was inspired to think about shame following reading Brene Brown’s book ”Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead.’The book encourages us to find the courage to be honest and vulnerable about who we REALLY are. It also talks a lot about shame and how destructive it can be in our lives and relationships.
“Shame derives its power from being unspeakable…. If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.”– Brene Brown
Reading the above words inspired me to write publicly about my realisation that I was carrying a lot of shame about the fact I was STILL very unwell. This had been made so much worse by the many battles to get properly diagnosed and then treated. Which many who have rare illnesses/ diseases can face. That includes many of us suffering from CSF leaks whether caused by an accident, purely spontaneous, from a labour epidural, C-Section spinal, a lumbar puncture or other medical procedures such as spinal surgery.
Many of us have faced doctors who have disbelieved us, or at least, disbelieved how bad our symptoms and pain are. We have been on a journey of misdiagnosis and seeing various different medical professionals, until finally finding doctors who understand and can help us. (When you do finally find those doctors they are valued, appreciated and loved more than they will ever know.)
And it’s simply because many doctors do not know much about CSF leaks. In the end, when we do get diagnosed, we are often told how ‘RARE’ we are. Although recently, it is becoming clearer that we are not actually as rare as people once thought – just commonly misdiagnosed, or even ignored, in the past.
Fighting to be heard when you are so very unwell is utterly exhausting and often completely overwhelming.Fighting your case when you are healthy is hard enough. But fighting when you are sick can be an utterly demoralising, shame filled, journey that can leave you with a potentially deeply dark despair. Especially when you are no longer confident that ANY Doctor will really listen and learn, what they need to, to help you.
Shame is that feeling of ‘I am not enough’ or ‘I am not good enough’. You can feel like a failure – not necessarily because of something you have done wrong, but because of who you are, or because of the circumstances you find yourself in, often due to no fault of your own. Sometimes simply because you have a medical condition, or something in your life, that most people just do not, or even refuse, to understand. You feel embarrassed, ashamed and humiliated and can then wonder if there is something really wrong with you as a WHOLE person. You think ‘perhaps I am just not ‘good enough’ or ‘strong enough‘ to do this, why can’t I ‘be and do better’ than I am doing… why do they not understand and listen?’
…. and SHAME begins to relentlessly and often unknowingly eat away at you!
Shame really messes with your mind and emotions and brings a whole spectrum of reactions from – hiding away from other people and getting lost in your own failures and problems – at one end – to getting angry, blaming others and lashing out, for the feelings you have – at the other. And often then trying to cover up your shame by pretending and putting up a front – in between it all. Sometimes we deflect the shame by blaming someone else. But often the fact is, whether or not someone else has directly or indirectly added to or even caused your shame, the soul destroying emotion of shame is still owned by us and we are the ONLY ones who can truly face it and deal with it.
Whilst we simply blame others for it, we won’t be able to get free.
I really do believe many chronically ill people, particularly those with a rare condition or invisible illness, can carry a lot of SHAME from their difficult journey to be heard, supported and helped.
Shame…… that we are ill in the first place and can’t ‘overcome it’. Like other people can with ‘normal’ or less severe illness, and sometimes even more severe cases that can be more easily fixed or treated.
Shame…… when you know the doctors AND even sometimes members of your own family and friends are wondering if it’s ALL or at least PARTIALLY ‘in your head’. When the reality is your body is not actually functioning anything like how it should.
Shame….. that however much you try to engage with life, and ‘push through the pain’, you are still so exhausted by it. It daily feels like you are running a marathon after being whacked round the back of your head with a baseball bat.But you are also very conscious that you do not want to keep sounding like you are complaining and being negative. So you try to smile and chat ….so in reality many people often do not know or really understand how unwell you actually are. Until you have to leave and retreat due to the immense pain and inability to cope with the trauma in your head and body, so as to HAVE to get back to relief of lying flat again.
Shame…. that even when you ‘look well’ in reality nothing has really changed since last month when you ‘looked well’ for those couple of hours, or so, you managed to be ‘upright’ and out, or with others at home (even though in reality most of that time your body was actually screaming at you to get flat again so your brain could get back into its right position in your skull).
Shame….. when tests and scans come back negative and do not correspond with how severe your symptoms are. So you lack the clear, non subjective, medical evidence you need to ‘PROVE’to others how unwell you are. (Although even having evidence does not necessarily always help and does not always correspond with how bad your symptoms are anyway).
Shame.… when someone asks you how the ‘headache’ is and you really want to scream at them “it’s not just a headache!!! Please stop just calling it ‘a headache’!! It’s a complex and debilitating set of neurological symptoms, pain and a feeling of trauma throughout your whole body which gets increasingly worse when I am upright until I cannot cope anymore.”…. But you instead calmly reply ‘yes, it’s still there!!’ (And has been for over two years …. every day…. most of the day…..when I am actually able to be upright).
Shame.… for the daily feeling that your life is currently so ‘small and insignificant’ because you can’t DO very much anymore. So you no longer feel like a fully functioning member of society. And can’t even fathom what a day with no pain and symptoms feels like any more.
Shame…. that you have to spend so much time in bed, because with spinal CSF leaks the only time you feel fully well is lying FLAT IN BED. (But it’s out of necessity – NOT a relaxing lie in… at times my bed can feel more like a prison than a retreat).
And the shame can pile up….
….shame…. uponshame.…. upon shame …… upon shame!!!
After every new appointment, after seeing ANOTHER doctor who doesn’t understand, after every test that comes back clear, after every social event you have to miss, after every month you can no longer work.
Every person you have to tell every day, every week, every month, every year that you are STILL not well and there is still no clear end in sight!
I found so much freedom from that shame over the last year. But sometimes something new brings it back to the surface. It creeps back up on me again and attempts to sink it’s toxic claws into my thinking and emotions. I then realise I still have some underlying shame there …. or at least it’s destructive sticky residue is lingering and refusing to leave.
So as Brene Brown advises, I am again choosing to speak it out in this new post. And to say to others –“I feel your shame too, I feel the exhaustion of the fight, I feel the anguish that the nightmare seems to never end and the chaos it’s brought in your family and relationships.”
Every time I read about another suffering soul facing ANOTHER exhausting battle to be heard – I feel that despair with you!! I have been there, I have walked, and still walk, that never ending road of endurance. An endurance you are not always sure you will still have the strength for tomorrow.
A road I did not choose myself, but wake up to every morning – with no other option than to get up and face another unbelievably exhausting day of trying to LIVE LIFE with relentless debilitating neurological pain and stiffness (head and spine), brain fog, mental and cognitive fatigue andimpairment, body and limb weakness, vision issues, tremor, shaking and much much more. And have to dig deep daily to CHOOSEcalmness, kindness, thankfulness, love and hopeDESPITE it all!
Which is not easy!!
I have also known the darkest of nights when you convince yourself that escaping life itself must be better than living it like this…. and then ALSO then felt the shame of being the one who ‘couldn’t cope anymore’ and was now mentally unwell too.The one who couldn’t endure how she hoped she might. The one who fell apart when she reached the end of herself after a year of health battles and disappointments.
And that is why I know, although I am only one voice, I am one voice speaking for many!!Speaking up is ONE of the things I can still do.So I hope as I say it this way – we can also become many voices united as one.
To remind people (especially doubting medical professionals and doubting family and friends) that until you have walked our path and we have walked yours – we have no REAL idea how hard the other person’s journey has really been and is.
So please don’t assume you know! And we will try our best to do the same for you!
Just because my case is ‘unusual’ and you don’t understand it. Just because my physical condition pushed me over the edge mentally. It doesn’t mean that it is mainly psychological and that I do not have a complex medical condition that leaves my body utterly debilitated. If you lived in MY body for a day – you would soon find that I do not have a simple ‘headache’ like the headaches you have probably known that go away with a couple of pills or a good nights sleep!!
We just ask that you PLEASE listen and allow your mind to be opened, rather than try and force us into the boxes of your limited understanding and experience. I do not expect you to know what you don’t know.But I would appreciate it, if you could just listen and try to understand, and humbly realise that you perhaps do not know as much as you think you do about what is wrong withMYbody.
Until you have watched your health being ruthlessly stolen from you overnight – with no clear assurance of getting it back any time soon. Until you have known the agony of mis-diagnosis and constant questioning from medical professionals unsure of what to do with you, in part, due to a lack of knowledge about your ‘rare’ invisible condition and subjective pain scales. Or worse – until you yourself have faced being ‘interrogated’ by disbelieving, and defensive, medical professionals who think they know – what in reality they obviously don’t. (We are so very very grateful to those who acknowledge what they don’t know and do choose to listen and learn with true humility regardless.)
You do not really know what it is like!
But when you do ‘get it’ or at least try to, then you are welcomed into a new family of others who do KNOW! Who have lived through the devastation of a rare debilitating invisible illness and walked a similar path either personally or alongside their loved ones, close friends or with many of their patients.
When your eyes, ears and hearts are opened and you meet others who have faced a similar pain and carried a similar shame – you know you are not alone! It gives you more fuel for the fight because the battle is no longer JUST YOURS. You are ALSO fighting on behalf of the MANY. Those walking with you AND those coming behind you.
So today I again choose to throw off my shame by SPEAKING IT OUT – so that I can take another’s hand. And say…. “yes this journey is so very tough…. yes the battle often seems relentless….yes we can’t be sure what the future will bring… and yes you will often wonder how you will ever endure the never ending storm.”
But we can fight TOGETHER!!
Some days I struggle to find the strength to fight for just ‘me’! But it’s then I must remember – it’s not just me I fight for!! I fight for you,your family member or loved one. I fight for the person, family member and loved one who will come behind me.
I fight with, and for, all those who know the relentless exhaustion of battling a rare or chronic invisible illness and pain.
WE also fight with, and for those of you, facing any challenge in life that feels beyond you at the moment. Because WE know what it is to have to choose to keep on going, and keep on living, when some days WE just really want to give up and escape it all.
So will you join our fight of many TOGETHER?
Because it’s then… That I find I can dig EVEN deeper. Deeper than I have ever gone before. To find the strength to endure OUR storm TOGETHER!
Because this life shouldn’t just be ALL about ME and MY struggles and pain. It’s about US finding a way to navigate through and endure the ups and downs of life together – as equal broken specimens of humanity. So that on the days I feel like I am falling back into a pit of despair, when EVERY part of my debilitated body screams at me to give up the fight. I know there is someone else who can reach down and grab my hand as I start to fall – offering empathy, love, compassion and strength – whilst also helping to pull me back up to face another day. Then tomorrow it might be my day to reach down to you, as you fall, and help pull you back up to face another day too.
And that way we will break away from the shame that tries to chain us up!AND dig deep to ENDURE the tough times TOGETHER!
Life is ALWAYS better when we face it TOGETHER!
“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. ….. A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.” – The Bible (Ecclesiastes 4:9-10,12)
Do you feel that shame? We all carry shame in some form. Please do comment below – if we can speak it out then perhaps TOGETHER we can beat it!
“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.