“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”
– Mother Teresa
At the end of January I had another horrendous relapse / flare of my arachnoiditis/ mild adhesive arachnoiditis & spinal CSF leak symptoms. Although I had experienced some pre-warnings in the weeks before, on Thursday 28th January my symptoms again exploded so acutely that I knew I needed to access another 5 day IV methylprednisolone ASAP, as previously agreed with my more local neurologist if that happened. It unfortunately still took a week to arrange for me to receive it at the local day case unit, especially as I really wanted to avoid going via the ED due to Covid and hospital pressures. It was also the first time of these arrangements being actioned which meant it took a little bit more time.
So as I waited at home as we and my wonderful GP team chased the hospital and my consultant to make arrangements for me ASAP, my husband and I made the decision to film what happens to me when I flare / relapse, and how I responded to treatment – as an open education and awareness project for other patients and their family and friends, as well as any doctors who may be open to listen and learn more about arachnoiditis and spinal CSF leaks.
We mainly decided to do this because when doctors, patients and the general public do not understand these conditions it causes us sufferers so many many problems in being ‘heard’ and accessing treatment. Also – as anyone can see from the videos when I am in a flare – things deteriorate dramatically in a week. Arachnoiditis/ AA flares should be treated as a MEDICAL EMERGENCY if doctors want to stop more permeant adhesions from forming – which could ultimately lead to paralysis, partial paralysis, incontinence and irretractable pain syndrome.
So I cannot stay silent!!
Without my IV steroid treatment, steroid taper and ongoing every other day 5mg prednisolone (steroid) and 75mg diclofenac (anti-inflammatory) & 4.5ml LDN (low dose Naltrexone via private prescription), I have no doubt the adhesive arachnoiditis would have moved into more severe categories over the last two flares.
It thus felt time to branch out into videos to complement my writing in this blog.
So I have a YouTube channel now packed full of educational videos showing my flare, talking about symptoms and how I have done in recovery since. I will keep updating my channel to talk about my progress or new things I am learning about that are relevant to the condition.
Here are some of the relevant videos and links:
Here are a few other videos from each section and a link to each ‘playlist’. All the individual videos can be found on my YouTube channel.
I will now add one or two key videos from each list here:
That should be enough videos to give someone more of an introduction to my new educational and awareness project. I have learnt a lot over the past six years about my two radiologically confirmed diagnoses, even though I only knew I had had arachnoiditis all along too since July 2020. (It can now be seen on my original 2015 MRI’s 3 months after my accident and before any of my spinal procedures. I also experienced symptoms of arachnoiditis as soon as my symptoms came on after my ladder fall in January 2015).
PLEASE NOTE: ALL MY VIDEOS & WRITING ARE FULLY IN THE PUBLIC REALM AND CAN BE SHARED IN ANY CONTEXT OR PLATFORM WITH MY FULL PERMISSION. MY ONLY DESIRE IS THAT PEOPLE LEARN FROM MY CASE SO THAT OTHERS DO NOT HAVE TO SUFFER SO VERY MUCH FOR 6 YEARS TO GET RADIOLOGICALLY CONFIRMED DIAGNOSIS. SO PLEASE DO SHARE THEM WIDELY!
Thank you to everyone for all your support in this new educational project. I had 1000 views of my main case summary video in one week and I know many doctor contacts saw and shared it. If any doctors do want to know more they should feel free to get in contact with me and I can share more about the hospitals, teams, GPs and consultants I am under – IF they want to find out more because this would help their patients to get treated more quickly.
I now have two written radiologically confirmed diagnosis of arachnoiditis from two senior NHS neurologists at two Midlands NHS hospitals. I continue my medical journey under both their care.
Email me at: firstname.lastname@example.org
If my journey changes the outcome for just ONE patient then it is worth it all. So if you are that patient today – I do this for you and pray that the information I share may make your journey a little easier than mine.
“Let me be filled with kindness, and compassion for the one For humanity. Increase my love”
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.
“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.”