That Day

⚠️ Content & Trigger Warning ⚠️

The following content may be emotionally challenging to some readers. This blog contains themes including, but not limited to, discussions around depression, trauma, self-harm and discussions of physical and emotional distress. In this post I will be discussing these topics to hopefully educate and enlighten people into my life, and potentially a glimpse into the lives of others.

I must also state that, despite the depth of some of the words used in this post, I am safe and in no danger to myself whatsoever.

Furthermore, I appreciate this is a lengthy read, but line breaks are occasionally included as suggested pause points should you so wish to use them.

Thank you.

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The 19th May of 2005.

Nineteen years ago.

More than half of my thirty-four-year life ago.

5,785 days out of the 12,725 I have, somehow, managed to get through ago.

I was diagnosed with Multiple Sclerosis (MS) that day. That day when I was fifteen years old.

I’d spent weeks off school before that day. Spent weeks not being able to see properly. All things bright and not very beautiful. All things double. All things hazy. Staggering around like I’d had one-too-many underage drinks.

Lying in bed, watching the 2005 World Snooker Championships while my friends were out playing football. My eyes producing two foggy outlines of every single thing in my vision. It made for an interesting watch, to say the least, as the players seemed to take forever to pot those many balls down those many pockets… The only coping mechanism in my armoury was to try to cover one eye as much as I could.

I didn’t know exactly when that day would arrive but I knew something alarming was going on. I knew there must be something serious going on with my health.

As it turned out, for a little bit of extra pinch of spice, that day arrived during the middle of my ‘Standard Grade’ exams. A day that had hung over me for what felt like forever, like a mysterious black rain cloud. Just hanging there. One of those which is either going to break up to reveal the glorious sunshine behind it or, alternatively, decide to forcefully relieve itself the moment you try to sneak out beneath it. I had no knowledge to be able to predict what was to come. Will it be today or will this one pass, too? Life, as it had been for much of my young life, was chaotic. I was overflowing with questions.

That day fell just six days from the end. My first-ever school exams almost negotiated. You probably know the feeling yourself. Unpleasant doesn’t really cut it does it? A stressful and daunting time for any young person. Full of facts, dosed up on formulaes, bursting with quotes, brimming with dread and up to the eyeballs with anxieties.

But those anxious feelings we feel during times like those were bombarding me ten-fold. Those emotions that had spun around my head for months and months leading up to that day were battering me. I had too much on my proverbial plate. And exams were only responsible for a minuscule fraction of that stress, dread, worry, fear and anguish that rumbled inside me. I was fighting to deal with it all.

Don’t get me wrong, I worried about the exams. I worried about them just like anyone does when they know that intimidating paper is going to be slapped down in front of them and that cheap, white, analogue clock at the front of the hall is going to tick and tick and tick again. The one that pulses through your chest and thuds against your heavily graffitied desk. The one that vibrates through your pen as you try to keep it clinging on to your perspiring hands. Another second less. Get yourself together. Test begun. You don’t have time to waste. No more time for worry. No more time for any fear.

But the tests I had faced had been around for months. Long before exams. Eyesight tests. Strange scans. Walking and balance assessments. Knees and other joints hit with that strange little rubber hammer. I’d been punctured so many times for blood samples I was almost porous.

“Can you touch your nose?”

“Can you walk up and down?” 

“Can you feel this?“

Feel what? 

“Can you feel that?“

…

“Can you follow my finger as I spin it around the room?” 

Which one of the two should I follow, I wanted to ask…

Scans completed. Examinations ongoing and further assessments to come. Brave face securely pasted on. 

And here I found myself flapping around. Pacing. Scrambling to put words to the questions that didn’t make any sense. Why didn’t I feel the same as everyone else? I didn’t study this. I’ve obviously stepped into the wrong exam. I can’t make sense of this. This isn’t my level. This is too advanced for my age and stage.

Tick. Tock.

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I’d sat an exam that day. Another hurdle negotiated. Nearly there. My faulty eyes focused searched for the end as best they could.

After my exam that day I found myself sandwiched in at the hospital for yet another urgent appointment. It had been a whole ten days on from escaping the previous one but, despite the busyness and the angst, it felt like an hour. After nearly a month of being bombarded by questions on a page, and even longer from the blood-thirsty media in my head; I ached to know the answers. I read the sensationalist headlines and scavenged beneath for the facts. I tried desperately to filter out some of the frenzy.

What was going on? What were all these strange feelings I kept having? The ones since my early teens. The ones from even earlier than that. The numbness. The double vision. The vertigo. The depression. The pain. Why was I so tired? Why couldn’t I complete a full day at school? Why couldn’t I kick a ball with my mates? Had I really had a stroke the other week? The assembled circus in my head suggested answers. My skull ached with the strain. I physically hurt with worry.

I hoped someone could give me the answers. Someone who knew what they were talking about. I was tired of trying to think of my own answers. I closed my eyes in the waiting room as my name was called. I peeled my sweaty legs from the blue plastic and made my way towards the voice, practicing the best ‘normal walk’ I could muster. With as much concentration as my exhausted mind could muster, I sat down stiffly and the clock began ticking. Ten minutes for this one, if I’m lucky, I thought.

A locum Neurologist broke the news to me that day. Showed me pictures of my brain. Spoke about my results. Told me about the scans I had had. Pointed to the areas of ‘damage’. Made some comparisons. Did some more prodding and some more poking. Probably to pad it out a bit. Add an extra sprinkle of tension to the whole situation. Because it really needed it…

Eventually, after a wall of noise and apparent explanation, I got an answer that day. Another one ticked off from the month. Another mark in the bag.

But I had to do the working out. I had to try and form the solutions and the explanations. I created new questions. But ultimately, and finally, the findings were revealed.

The neurologist casually released some words to me that day. Delivered with such uninterested calmness it almost came across as something I should be pleased about. The words filled the room as she flicked her way through the papers on her messy desk.

“You have Multiple Sclerosis, Stuart.”

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Medical terminology quickly flooded out of her mouth; the jargon and confusion crashing firmly into my weary remains. Out of the corner of my eye, I stared at the blurry pictures on the plastic film on the projector glass. Gradually her words fell quieter as they found themselves lost in the tense air between us, drowned out by the increasing cacophony of thoughts in my head. In my brain.

My damaged brain.

The one that stared back at me. Haunting me. Its eyes on me as it lay there clumsy spread across the white-hot lamp source.

My brain.

Bits being quickly stabbed at with a pen.

White blobs.

Damage.

“Demyelination.”

Scarring.

In my own head.

My. Brain.

I squinted again.

Is that really mine?

Me?

My abnormal brain.

What’s that all about, Doctor?

That’s not normal, is it?

Little did I really know at the time, another course of thick, heavy concrete had been poured into the base of my lifelong relationship with the brave face.

I’d always had this gift. Or, at least, for many years, I thought it was a gift. My default firm exterior pasting over some cavernous cracks in my psyche since childhood. But this just topped it up. My life long feeling that I need to appear ‘fine’ and ‘in control’ was well and truly fixed in place, and fixed in permanent position, which years later, in my thirties, becomes hugely detrimental to me, and another part of my physical and mental health that is debilitating to live with.

I was tired that day. I had been for weeks. Actually, if truth be told, ‘tired’ is a bit weak. I had been consumed by it for weeks. I had wondered what had been going on for months. Years, perhaps. I’d always felt different. I’d always struggled to cope. I’d never been happy in life. I was always trying to respond to life’s challenges but didn’t feel old enough for it. Things had always felt too much.

I’d missed school. My eyesight was fading. I had cancelled plans. I’d lost feeling in my body. Sleep was a distant memory. I’d drifted apart from friends. I’d hardly revised. I didn’t want to eat. I purposely hurt myself. Punished myself. Blamed myself. Felt shame. My whole life of feeling I could never cope with things. Believe(d) that I was a factor in bringing this on. I’ll pause.

Life continued and I clung on. I couldn’t pause. No option for that.

I clung on. I clung on by every last millimetre of my ever-shortening, chewed-on, fingernails.

But at least I had an answer. Finally, an explanation.

Everything will be ok. It’ll be better in a few weeks. I’ve finally got a solution.

It’ll be back to normal soon.

Won’t it?

Won’t it, Doctor?

The brave face twitched. It slyly shuddered with dread.

“You have Multiple Sclerosis.”

Didn’t mean anything to me. 

I couldn’t even repeat it, never mind spell it. I’d write it down if I knew where to start.

From receiving the diagnosis, to the locum neurologist leaving the room was less than five minutes as she had a train to catch back to Aberdeen… So no time for any discussion. No space for any opportunity to understand. It didn’t hit me until long after the enormous affect that had on me. But, at the time, I guess it all added weight to my hope that this can’t be that much of a big deal.

I left the room tired. I left the department with questions. I had no idea the weight of the news that had just been placed in my backpack with the tag : “Do not remove”. “Must carry at all times”.

“Do not remove for the rest of your life.”

I staggered silently through the wet car park with my dad that day. In that month of being peppered with questions, a million or so more fluttered around my head, each fighting desperately for my undivided attention. “Why wasn’t I staying in hospital to get some drugs to make me better?” or something to that affect was one of the many. I sat and stared out the passenger seat window, my exhausted head welcomingly cushioned by the cool glass.

Oblivious.

My unsettled life was crumbling further before it had really started and I didn’t even know the half of it. Not even a quarter of it.

I’ll get some medicine and get over it and get back to normal. Maybe a bit of time in hospital but at least now I know what it is.

Now I can get better…

I had no idea.

Absolutely none.

Youthful naïvety. 

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I plodded into the house followed by my dad. We hadn’t said a word. I was too exhausted. Too uptight. Too worried about the tomorrow’s exam. Too concerned with my performance in today’s. Too curious as to what this was all about. I guess he must be tired too or something. Not a word.

Then, suddenly, the silence was swiftly broken. 

Hysterical is how I would describe it. I can’t even put it into any more words to this day. My dad was slumped in the wave of emotion that had overcome him. I was in his arms. He was in mine. I was holding him. Clutching him.

What the hell is going on?

I joined some dots that day. I found out that day that my auntie also has Multiple Sclerosis. His sister. I knew for years that she wasn’t well but at my age, I wouldn’t know what MS was. I mean – MS must be for older people, right? I’m a boy.

My chair wailed as I threw my backside down as I began flicking through the exam revision papers on my desk, shutting my bedroom door. Wasting time. Distracting. 

I knew.

I wouldn’t just take some time off and get myself cured for next term. I wasn’t some footballer cutting their season short for a routine procedure to be fit and ready for pre-season. I wouldn’t just get some medicine and be alright in a few weeks. I wouldn’t just be back to ‘normal’ – whatever normal was in young life full of chaos and uncertainty and sadness that had led up to this day.

Fifteen years old.

Through my own eyes, just a boy. Compared to all this, just a baby.

I listened to music during the night that day. That evening I, rather ironically, elected for ‘The Earth is Not a Cold Dead Place’ by one of my favourite bands ‘Explosions in the Sky’. The droning, heavy sounds punched and rattled my headphones until the early hours. It was a deeply memorable experience – and something I love about some music – that it can take you places – even if just for fourty minutes or so (or it did until I developed bilateral tinnitus and hyperacusis just over three years ago which has been another crushing blow to my mental health). Fourty minutes or four minutes, either would do for me that night – and most nights for the time where I could enjoy music. I will always remember that particular listen. A cauldron of boiling emotions raged beneath the frequencies crashing into my eardrums.

As the final few notes trickled away and I rejoined earth I tried to resist flipping the home laptop open, firing up the first search engine and typing in “fucking hell, what is going on?” “MS” “What the heck is MS?” and “how many fingers on one hand represent the number of hours until my next exam starts?”. And some other phrases.

I lay down, the laptop pulsed on my pounding chest as I clicked through the pages and pages of results, the white light sizzling my retina’s as I squinted to see the letters, closing one tear-filled eye to get as clear a view on the words as I could. I clicked open the first ten search results. I read slowly, tab by tab. I read with immense fear. I read with sadness.

”  W  H  A  T    I  S    M  S  ?  “

“Multiple sclerosis (MS) is a condition which can affect the brain and/or spinal cord. It can cause a range of symptoms, including problems with vision, arm or leg movement, sensation or balance.”

“MS is an autoimmune condition. This is when something goes wrong with the immune system. The immune symptom mistakenly attacks a healthy part of the body – in this case, the brain or spinal cord of the nervous system.”

“The average age which at which people develop MS is 30 years old. About 70 per cent of people with MS develop the disease between the ages of 20 and 40 years. It’s about two to three times more common in women than men.”

“It’s possible that MS may impact on what you can do in the future and you may need to adapt to these changes and learn to do certain activities in your life differently.”

“It is estimated that for all MS patients the chance of walking unaided in 15 years following disease onset is 50%. 1/2 of the patients will need assistance in walking or will be wheelchair bound; another 1/2 of the patients will be able to ambulate unaided.”

“Frequency of death by suicide was found to be 7.5 times higher among patients with MS compared to the general population. It was found that in suicidal patients, suicide rate did not correlate with disability.”

“The average longevity in the population of patients with MS is very difficult to estimate because it varies widely from patient to patient. Average life span of 25 to 35 years after the diagnosis of MS is made are often stated. Some of the most common causes of death in MS patients are secondary complications resulting from immobility, chronic urinary tract infections, compromised swallowing and breathing. Some of the complications in this category are chronic bed sores, urogenital sepsis, and aspiration or bacterial pneumonia.”

I hadn’t even lived.

I hadn’t even got a job.  I hadn’t even completed school. I hadn’t even completed my exams. And on it went.

Incurable.

I hadn’t done anything. I hadn’t achieved anything. I hadn’t even been happy. I hadn’t even ever felt settled. I hadn’t ever felt able to cope. I hadn’t had a life. I hadn’t felt at one with the world. I had always felt unsafe.

Why me?

Life-long.

I wept.

Progressive.

And I wept a bit more.

Disabling. 

And another deluge came.

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The bright light of morning pierced through my curtains as I lay exhausted in my own salty outpouring from my tired eyes. My face was full; my eyes raw. For some reason, I remember my teeth felt tight like I’d eaten too much sugar – a feeling of which my chunky figure knew a little too well, but no sugar had crossed my lips this time. Salt, however, I couldn’t deny as I tasted the stale tears on my gums. Before I knew it I was on my way to school again for the next inquisition. Five days from the end…

My head felt heavy. My body, weary. I longed to let the tears flow again but I fought them back. To be honest, I think I had used up my reservoir anyway. I’ve struggled to cry since that day. My reserves were well and truly drained dry. I wish I could as almost every day for the past few years has been full of the most immense physical and emotional distress. Buried inside. Locked away. Overall, a miserable life.

It was the end of my childhood that day. The end of what had been a difficult childhood for many reasons. I became an adult in an instant. A proper grown-up. I realise now that I still don’t think I have ever fully accepted or dealt with the trauma. I still feel robbed. I still feel bitter. My well-established ‘brave face’ and my inability to ask for help or say that I’m struggling doesn’t help. My mind convincing me I am weak and defective and unloveable my whole life. Overcontrol at what goes on inside of me. But, I had to work out how the hell I was going to navigate this. And I had to do it right away.

I always feel I never really had a childhood. I never think back to a carefree time. Unease and upheaval followed me from the moment I sprouted hair. It feels like my nervous system was never fully established to cope with the normal highs and lows of life – not that this could be considered anything close to ‘normal’.

I continued onwards towards school. Nearly done. Just some more questions to think about. Just some more answers to find.

My mind was unforgiving. My thoughts were bleak. The exam hugely important but, in the grand scheme of things, did it really matter? What was the point anyway? More misery and misfortune had been dumped into my young life.

Creating my own exam in my head. For twelve marks. And a couple of extension marks.

Can someone answer? Can someone else sit this one for me?

Nearly at school.

You’ve got five minutes. All the best, Stu.

Could I finish my exams? Will I be able to see? Could I go to University? Will I be able to work? Can I complete the rest of school? Will I still be able to play football? Can people notice? Will I be able to talk? Will I be able to run? Will I be able to have kids? Will I be able to walk? Will I be able to eat? 

Will I survive? 

Will I have the strength to live?

Time up. Papers collected. You’ll find out one day.

My head was spinning. My exhausted brain felt like it was going to explode out of my skull. That damaged brain.

I was run down. I was worried. Confused. Questions swamped my head. I felt so scared. The load on my teenage shoulders was colossal.

That mysterious black cloud wept and wept. 

And darkness fell again.

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Despite missing much of another school term with crippling side-effects from the medications I was prescribed to try and control my condition I completed my final years at school, with great aid from some outstanding teachers whom I will always be extremely grateful for. ‘Disease Modifying Therapies’ – the medications were swankily titled – were to be administered by self-injecting – initially with intramuscular injections once a week, increasing to every second day. Within hours of squirting those toxic substances into my tender thighs the most rapidly evolving flu-like symptoms would knock me out. Chills. Sweats. Headaches. Top off. Top(s) on. Thirsty. Aching. Awake. Out-cold. I would miss most of, or often all of, the next day at school. And then it was injection day again. And then ‘feel shit’ day. And so on. I was utterly wiped out. Further misery.

My attendance at school was sporadic to say the least; my ‘social life’, non-existent. “Wanna play footy later, Stu?” “Nah, sorry, I’m…doing my injection erm…washing my hair,” I grimaced. Understandably, I stopped being asked places. I couldn’t tell people what was going on. I couldn’t talk. Gotta make out all is well – the story of my life… Pretty difficult after a night on these newly prescribed drugs that had taken permanent residence as tower blocks on the bottom shelf of my fridge.

Weeks and weeks into the medication and there was no improvement. In fact, I was feeling even worse. The medications, in short, designed to suppress my immune system and therefore hope that it won’t attack itself, did little to live up to their billing. I was still relapsing. Another relapse despite being on these drugs. Aren’t they meant to stop all this, I questioned furiously. Numbness down the whole left side of my body. Face to toes. Prodding and pinching my skin with not even a fraction of sensory feedback. A dead, unusable side. Off school again. More time missed on studies. More time spent drifting away from friends and from ‘normality’.

October 2005 came. It had been months since I began on treatment, the ones that I thought would make all this crap a bit more bearable but life has never given me much fortune and so, instead, I’d be spending hours in the hospital over several consecutive days receiving intravenous steroids to try and calm the exacerbations. Sweat pouring off me. Eating everything in sight. Eyes like saucers. Impossible to sleep. That plump, round ‘steroid face’. That would have been a difficult one to hide from my classmates and the teachers and the random man in the street. 

I was miserable. I was losing everything. I couldn’t function. There was no point in me trying to continue with life. I couldn’t carry on like this.

The injections were becoming increasingly challenging. I’d usually do them early in the evening so that I have no major commitments before the inevitable wipeout crashed through me. I’d sit there sometimes for minutes. And some more minutes. Counting down. Listening to music. Just stab it in and squeeze. Simple as that…

I’d even try to get help from my best friend. I’d have him come over and hold the needle and conduct a mutual countdown until, at the last second, I’d bottle it and dart across the room. It didn’t work but I’ll always be grateful for his support and his time. So I’d try a different way – I’d change plan and try and do it before I needed to go somewhere. To force myself into doing it. If you don’t do it now you’re going to be late kind of message to the knackered brain.

I just couldn’t take the inevitable lethargy. The most overwhelming side effects that would appear within minutes. I can’t keep this up. I can’t miss more life. I need to get my grades. But I can’t admit that this is too hard for me. I need to get over this. I need to feel I still have some strength left. I didn’t. But I made out I did. On came the mask of the brave face, the coping face, so learned by now it was no longer a conscious effort.

So I would nick the skin with the needle. Just a scratch in my raw, punctured thigh to make it bleed. And then spray the syringe – that valuable, expensive medicine down the toilet. Done my injection, look, pointing to the claret dripping downwards towards my kneecap. It was only meant to be once. I can’t do it tonight but I’ll do it next time. I’ll be braver then. Next time, I’ll make sure. I’m ashamed. But it won’t happen again.

But, it did. And it happened for weeks. 

I felt so guilty. So distressed. And the longer it went on the harder it became to admit it. I couldn’t even do something that simple. Just stab and squeeze. What a failure. I couldn’t admit the failure. I couldn’t ask for help. I didn’t want to admit to myself that, there was something else to add to the pile of things I couldn’t deal with in my short life. But the medicine is not helping anyway, I tried to tell my subconscious – a feeble case for defence to the ruthless jury which, still, reside in my head, just waiting to bombard me with punishment.

After those few weeks, my facade slipped and I finally admitted to my nurse that I had failed. The mask cracked and split and my shame swamped me. My mind further adding insult to injury as I could not keep on being brave – and that I had failed to disguise it – one of my very few skills exposed.

My eyes analysed every last nylon fibre of my shoelaces as my weary head slumped towards the ground and I felt the guilt I deserved, to top up my own shame just that little bit more. The monetary value of the medication was read out to me and how scarce it was. Surprisingly, that didn’t help matters but I deserved to hear it. An absolutely stupid failure. Those words, my own, by the way, but I am sure my nurses’ words were similar in her head…

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In the last nineteen years, there have been outstanding advancements in the treatments available for MS. Whilst there is still no cure, the medication options are increasingly developing in various forms including, oral medications and infusion therapies. But, for me, back in 2005, it was self-injection A, B and, possibly, injection C, I think.

So, in 2007, against the advice of my MS nurse, and my neurologist, I stopped the injections but, this time, stopped them officially. I couldn’t accept that had been beaten but I had to try something. My relapses were increasing, the side effects were crippling and I had a complete lack of both school and social life. It was a massive gamble to come off the Disease Modifying Therapies but I insisted to my care team that I had to do this. School was at the forefront of my decision. I couldn’t miss more time off with side effects. I couldn’t live with another year of failure and no grades. I had to try and feel I could still achieve something and that I could hopefully finally make someone proud. And I was running out of both time and, definitely, out of hope.

Through the fatigue, the strange ongoing numbness, and the shuddering reminders through my messed-up eyesight I did all I could to finish school and catch up on all I had missed. My final year. My last chance. The final shot at leaving school with some Higher qualifications after a, pretty much, blanket failure from the previous year.

I felt the pressure in my choice. Another load in the bag. Another hidden pocket to shove a bit more torment in. Go on, top it up a bit.

My choice. Against medical advice. “You have ‘Highly Active Relapsing/Remitting MS’. You are putting yourself in danger, Stuart”. Easy for them to say. Against the advice of some of my family. Easy for them to say, too.

I knew how unliveable life on the medication was. And I had lost faith in its ability to ‘protect me’. But it was also one that if I calculated wrong, and I was hit with permanent disability, I would never, ever forgive myself. After weighing it all up it was a gamble I felt I had to take. I came off all Disease Modifying Treatments.

And guess what, a couple of years later, in 2009 I was smashed with a cruel reminder. I should have seen it coming really. Especially as I could see twice as much as a ‘normal’ person. Here here we we go go again again I I sighed sighed…

This time my symptoms were even more aggressive. Complete numbness down my life side and, of course, double vision. Poor balance. Pain. For weeks. With no inclination of it going away. Some significant cognitive dysfunction fancied some space on the stage, too. Was this it? I guess this was always going to happen. This is because of you not taking the medications. The inner critic, that always pestered me, couldn’t be silenced. Another example of blame that would not be talked down. This is your fault. You absolute [*insert several expletives here*] idiot.

Thankfully, for me, a lengthy course of oral steroids gradually cleared things up and I was able to put down all the food, close all the windows and reintroduce clothing back onto my sweaty, steroid-kissed skin. The steroid weight gain and the horrible body temperature change were the least of my worries. I knew with each passing relapse irreparable damage was being done. But thankfully, for now, I was, mostly, managing to sneak out from the jaws of permanence. Thankfully, I slowly recovered. Somehow my body had more durability and resilience than I thought. Finally some good fortune. I felt extremely lucky for once. What’s going on?

I discussed the latest options with regards to treatment with another new neurologist. I knew I had to get back onto something as I could no longer take any more scares and any more risk. I hoped that something other than the injections was now available and, fortunately, there was.

A new medication had just come back on the UK market called Natalizumab (brand name, ‘Tysabri’) – a four weekly intravenous infusion, administered over an hour in an outpatient hospital setting. I was told I would be one of the first patients in the Scottish Highlands to be on it should I make that decision. “Where do I sign?“, I thought. I read though the information and, as per my MS nurse’s advice, I researched a bit more online.

“Natalizumab (Tysabri) is associated with a risk of PML— a rare, progressive, and demyelinating disease of the central nervous system that can be fatal. It is caused by activation of John Cunningham virus (JCV), which usually remains latent and typically only causes PML in immunocompromised patients.”

“If left untreated, PML can quickly become very serious, and often fatal. Even if it is caught early, it can cause severe and permanent disability.”

Another huge life decision and another dose of uncertainty. But through the stress and fear, I went for it. I had a medication that ticked some boxes for me and, with the disabling relapse I had experienced, I could not afford to waste any more time without feeling I had some sort of ‘protection’. After a couple of scans and few rounds of assessment to check my validity, I began the infusions in March 2010 and, during the course of my treatment, I had no new or active lesions. But, in my life, good luck and success, never seems to last too long, as I have learned many, many times throughout my, still relatively short, time on this earth.

Extremely frustratingly, around ten years later, in 2020, I was informed by my MS team that I would have to be taken off Tysabri due a change in my health which had resulted in my risk of the dreaded PML, and essentially, “Game Over” accelerating rapidly from “around 1 in 11,000 to 1 in 75”. I was withdrawn from the immunosuppressive therapy in July 2022 and began the immune-reconsituation therapy Mavenclad (Cladribine) in September of the same year. I completed the treatment last year and, we are awaiting my lymphocytes to slowly repopulate to bring me out of lymphopenia. I was pleased that in my post recent scan there is no evidence of new disease activity which was reassuring as – in my first scan since finishing Tysabri in late 2022 eight new lesions – half in my brain-stem and half in my spinal cord were reported. There has been an increase in issues with a long-standing poor function of my bladder and also an increase in altered sensation in my legs but with me, as you’ll soon read, there could be numerous other factors at play in these symptoms. Anyway, for now, back to 2010…

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After beginning on Tysabri in early 2010, I gradually began to settle. In fact, after a few months, and for a few months, I managed to find a way to loosen the load of that backpack. Untighten the straps. Ease the weight. Release the burden. The relief felt immense.

From 2011, sparked by some force of inspiration, I embarked on a journey that I initially felt was the best thing I had ever done. A combination of my new treatment, the end of a relationship, the recent debilitating relapse and the negative stories I had read about MS kicked my backside into the highest of gears. The realisation that my time and my health could be finite was at the forefront. I didn’t know how long I had. How long my body would hold up for? The unpredictability of MS is hugely challenging to live with – it’s difficult to explain to someone in different shoes. You don’t know what is coming and when it will strike. You feel you need to try and stay ahead of it at all times. To run from it.

And that’s what I did. I ran from it. After despising running throughout school (I genuinely mean anything more than 100 metres) I decided I was going to run a marathon for charity. Fucking hell Stu, calm down. You’ve barely ever run the length of yourself. You can barely run a bath. Valid points from that damaged ol’ brain, to be fair. The opinions of others on the goals I had set differed vastly, too. Understandable, I knew.

I bought my first ever pair of running shoes from the only running shop in town and gradually stomped the streets for months. It was an escape. Leave everything at home. Just me and the tarmac. Me and the forest. Time to breathe. To get my head a bit more level from the stresses of the day. But never did I expect anything like the rush it gave me. The feeling was special.

My confidence in my energised body soared. My, what I considered big goals in the grand scheme of things, became higher. The donations on my fund-raising page crept up as the encouraging messages increased. I feared looking back. Feared what might be next. But still, I fought to stay in the forward gear.

I believed in myself when others could not see through the challenges. I had an identity. Finally, a meaning was found for my troubled life. I was, apparently, an “inspiration”. As uncomfortable as it made me, I miss the feeling incredibly. The feeling of people being proud of me was something I hadn’t felt before. The feeling of being proud of myself was completely new and uncomfortable, but hugely motivating too.

I ran a full marathon. I ran several half-marathons. I raised over £50,000 in total for charity. I saved a life. I helped many more. For the first time in my life; I felt I had some sort of purpose.

I raised awareness of MS. I ‘spoke’ via social media to a worldwide audience. People asked me for help. I featured in newspapers, in magazines and online publishings. I was honoured with awards. People praised me for what I was doing. It felt uncomfortable, but so precious. Things were falling into place for the first time in my life.

Of course, life was still far from easy. The daily challenges remained, and the bigger ones felt a bit more conquerable. I had found an escape. At last, there was something to discharge the pressure cooker in my head. Finally, some of those lingering questions were answered. Fear was slowly dissipating. The goals got bigger, my voice got louder.

I thought I was invincible. I felt I had overcome it. 1-0 to me.

The backpack had been slipped onto one shoulder. Loosened the straps that had trenched into my flesh for years. The relief was immense. I didn’t think I was able.

My life became consumed by it as I fought to push all of my many other problems aside. Made out they weren’t there. Tried to leave them elsewhere. I went on and on and on to keep up this newfound identity. And I ran and I ran. I couldn’t afford to be caught again.

I fantasised about ultra-marathons. I visioned over completing ‘Hell on the Humber‘ – a 12-hour endurance event running back and forth over the Humber Bridge in Hull. I dreamt about triathlons. I even thought about looking into qualification for Paralympic sports.

And it ended.

In 2013, everything changed.

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My MS remained stable (and did so up until 2022), but life changed. No new activity in my brain or spinal cord but my health plummeted. I ran out of that, pathetically small, bit of luck I got in my life. Never to be seen again. I felt punished. I couldn’t, and can no longer, run from it anymore and it crept up on me with each passing second. A sudden invasion. I didn’t see it coming.

I had developed a problem with the blood flow in my pelvis giving me significant dragging, fullness, heaviness and pain – made worse with activity. From that, off the back of an operation I had to ‘fix’ the problem, I developed debilitating long-standing issues with symptoms far more widespread and far more intense than anything pre-surgery. My health dominoed – with one thing after another – incredible pain, depression, despondence and, the most brutal lack of hope. And it all continues, with great intensity to slide with each passing day and there is no interest anymore from a vast, vast majority of the medical world in investigation, accurate diagnosis or treatment. I’ve fought and fought and tried to take it as high up as I can.

I still fight, but I’m running on fumes. I wish I could explain to you the unbearable sadness that fills me.

The two surgeries I had over the course of a few months – a metal coil-embolization procedure in 2013 and a surgical ligation procedure in 2014 – made everything catastrophically worse and it is the most incredible, suffocating regret that smothers me at all times. I wish I had done my homework and not rushed in but I was desperate to get back running, to get back fundraising, to reclaim that ‘story’. I rushed into it in the hope of ‘fixing’ the problem and thus get back on the road – literally – to reclaiming my identity.

The two separate bouts of surgery are, despite the denials of the surgeon and their department, I believe, the source of my catastrophic downfall – beginning a matter of weeks after my first operation in 2013. My anger and regret is all consuming. When I think about what I’ve done in agreeing to surgery I genuinely lose my breath. But none of the medical profession take me seriously when I raise that my issues have become far more since the procedures. It is from there that my issues really started. A combination of denial, gaslighting and on, rare occasions, a scratch of a head as they tried for a few minutes to think of a next step. My health collapsed in every way.

I tried, off my own back, visits to a chiropractor and to an osteopath; sessions of shiatsu and of Hyperbaric Oxygen Therapy. Throwing a bit more of the little money I have at courses of hypnotherapy, of deep-tissue massage, of various physiotherapy specialties, and of acupuncture.

And through it all; unrelenting, tortuous, debilitating symptoms. “Fullness”, “pain”, “blockage”, “lumpiness”, “congested”, “dragging”, “bloating”, “plugged”, “corked”, “stuck”, “pulling”, “dead”, “lifeless”, “tired”, “hot”, “squeezing”, “pressure”, “tearing”, “stabbing”, “heaviness” just some of the adjectives used in the notes I provided in my last medical appointment. I can’t even have a drink of water without hours of specific discomfort. Unbearable hopelessness. An extraordinary challenge to make it to the end of every single day. Complete physical and mental exhaustion. An – always fragile – psyche destroyed.

I have fought to be re-seen by the same department who performed both the embolization and then the ligation procedure – especially because my symptoms have changed since my last four minute appointment in 2019 – but, despite taking my case to the local health board and then the Ombudsman, I have continued to be refused. Instead, when I fought to be re-seen due to this colossal deterioration in my health, the doctor who operated sent a refusal letter to my GP that I only saw by pure chance. I was at my GP that week and she informed me she had recently received a letter – it wasn’t actually sent to me, so had I not been there, I’d still be unaware of these ‘diagnoses’… : “It is fairly certain that he has a chronic pelvic syndrome, call it chronic pelvic pain or pelvic congestion syndrome or whatever, it probably doesn’t matter. It would not be good use of resources. I would hope he would benefit from a chronic pain referral, psychology or CBT referral.” It is way, way, way more than that. Way ‘bigger’ than that. No investigation or an accurate diagnosis has been given by Urology, other than that insulting letter.

My symptoms are utterly debilitating and increasing all the time. The latest, since around 2019, being a recurring, hard palpable right-sided abdominal mass added into the years of dragging, heaviness, fullness, pain, heat, congestion from up in my chest to down to my toes to name just a fraction of it. It’s intolerable. No matter what I’m doing or what position I put myself. I go to my GP and inform my neurologist every time I see him as, even though my issues are not due to MS, he is my main ‘way-in’ to the healthcare system these days. Most recently, I wrote to him advance of our appointment with a one page letter of, mainly non-MS questions, plus three full pages describing my symptoms. I asked for a CT scan as, since my last in 2019, my symptoms have both increased and changed. Instead, I was referred for a bladder and abdominal ultrasound, which I had a couple of weeks ago.

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During my scan the sonographer, interrupted the prolonged awkward silence, asking me if I had anything in my prostate, “like ‘devices'”. I responded, assuming he had picked up an image of the three 10cm metal embolization coils, but said they, of course, should not be in my prostate. He asked do they go in to my bladder which I, in a much more polite way than this, essentially said “How would I know? but they certainly shouldn’t…”. This was concerning.

As the scan continued the sonographer again broke the silence, sounding somewhat confused, saying “So you have MS, but do you have any other health conditions?” The tone and manner led me to believe that he had discovered something of note at the time. This was reinforced soon after when he mentioned I had not only prominent pelvic veins but also a very prominent inferior vena cava (IVC) of which he was unsure if this was “worrying” or not but he would write everything in the report back to “the doctor” (my neurologist). With regard to the original question, I tried while lying uncomfortably on the table to explain my years of suffering in thirty seconds and also why I was referred here for this scan. I told him there were no other health conditions (or none relevant to this) and that all I had was the range of (possible) diagnosis from my letter from the urologist in 2019 that have never been explored, investigated, diagnosed or, potentially, treated as I am not allowed to be seen my them anymore. I told him about my coil embolization procedure in 2013 to which he asked if they did a CT scan first (to check for compressions upstream) which, sadly, I had to deny.

At the end of the scan the sonographer told me he would write to the doctor to let them know what was seen in the scan and for me to get an appointment with my doctor whenever I can to discuss what was seen in the scan and where I go from here. Based on the interactions during the scan, and his tone, I felt that something was detected. As I awaited the results to land on the door mat I felt buoyed as I thought I’d have something to go on – and I didn’t care on the severity. In many ways, and I say this with total seriousness, if it had been something that would see the end of me, I would have felt the most relief to end my suffering. Instead the results letter only offered more questions – which I have proceeded to send to my neurologist and pin all, pretty evidently vastly decreasing, hope on this.

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If I’m being honest, it has felt like a vast ‘cover-up’, at least from the urology side of things who were responsible for the surgical interventions as, ever since then – particular the second intervention – things were not right. Hours after being discharged I was aware of a huge haematoma, which when I flagged this I was told was normal. I know deep down it wasn’t so. And it was just a sign of more problems to come. Essentially it was the beginning of them as life pre-surgery was apparently bad, but night and day compared to post. Night and day.

And so I’ve been hung out to try. Discharged. Discarded. I’ve felt I have no choice than to give up. I don’t even go to the GP anymore and report things as it is utter invalidation and gaslighting. I swear to you it is living hell. Words cannot describe it.

And it continues with each passing day. Life is unforgiving. Daily feelings of absolute despair. 2-1 to it.

The fact that MS doesn’t stop me (I hate that phrase but it’s fitting here) is so smotheringly sad. People say I should be grateful but I swear to you if someone could experience these symptoms I live with, for matters unrelated to MS, they would not be so welcoming. It adds to the catastrophe of it. Who knows what I could have achieved?

Everything is on top of me and I’m losing these years where MS is not my main source of physical symptoms. It’s trying, daily, to deal with the mental strain of these challenges of debilitating fullness, heaviness in my chest, abdomen, pelvis and legs from whatever condition of the many listed by the doctor in that letter I have, if any. I went as high up as I could but still I am not taken seriously and, instead, refused to be acknowledged.

I tried then, and try even harder now, to keep going. I really do. Try to keep doing what I can and when I can. But it feels futile. Nothing gives me pleasure.

I go for a walk every day. It doesn’t sound like much but it’s something. Despite what sounds very defeatist, I’m always looking for things to try and lighten the load. Unfortunately, very rarely do I find anything, but I still search.

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That backpack was heavy. It pulled me down. It was heavy for years. Maybe subconsciously that pocket of the backpack still is. It must be. Maybe I still don’t want to accept it. Maybe I still, nineteen years on, block it out. My default – block it out. Distract. Try and avoid. Short-term gain, long-term pain I’ve realised. I wish I still didn’t react to stress as I did back then.

I ask why me? And it shames me. It shames me that I ask that question. But I do sometimes. As it fell in the only exceptionally short window of a miserable life. A life of never feeling safe. Not feeling wanted. Feeling that showing vulnerability or weakness is dangerous. Feeling it is important to stay in control at all times. Always feeling that it is important to not make mistakes. Make sure that everything looks good and that I’m not doing anything ‘wrong’. Feeling that winning and succeeding is important. Overflowing with angst and fear from as long ago as I remember – long before MS arrived. It’s no one’s fault but my own.

I still punish myself for my diagnosis. Still believe that my inability to cope with stress as a child was a factor in developing MS. My inability to ask for help, my inability to say “Hey, I’m struggling, here“. My belief that I must keep things hidden. Bottle things up. Repress my turbulent childhood emotions. Showing emotion is weak. Self-control is imperative. You must achieve. Stay silent and stay; what I thought at the time, strong. Something that I’ve still never learned.

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I didn’t think anything would ever come close to how I felt on that day. I thought nothing would match the pain from that day. I thought nothing would match the weight squeezed into that backpack that day. A backpack bursting at the seams even before that day. And one that, for the last ten years in particular (ramped up another level in the last four), groans and groans as it is filled up with unbearably difficult symptoms sucking up any of the measly bit of joy and enjoyment I had left in life.

So, I guess I was wrong. 

I was so, incredibly, wrong.

As it turned out, that day was just another chapter in a series of pain, almost made worse in the fact that I had a glimmer of hope at some point around two-thirds in. That tiny window of living. It only made it further to fall. I don’t know who I am or what my purpose is anymore.

I know this post has gone off on a tangent but how could it not? I spend my life trying to hide this and when I start, I spill out as at least there is no one in a white coat sat across from me who I feel I have to ‘convince’. I can try and express it a little. But this is me. It’s all relevant. And I could go on and on, but I will finally bring this to a close.

I’m sad. I’m crestfallen. I’m tired of living a life with disappointment after disappointment. I ‘live’ in the thickest pool of distressing grief. The most harrowing sensations – physically and mentally. I can’t focus. I can’t even think straight. My wells of resilience split and crack. They groan with thirst.

I’m not living. I’m just killing time.

Just how much can I continue to muster?

I sigh when I wake up and think “how am I going to waste time today?”. Uncomfortable whatever I’m doing. Every single day I look at the clock until it is acceptable to go to bed. It feels like I’ll never be able lift myself out of this stifling sorrow.

But I guess, somehow, I do. For now, I must feel pride in that resilience. From that day to today. An extraordinary achievement to still be trying.

To still be here.

Deep down, I’m so proud of myself for keeping going.

As I type those words rare tears fall. Tears of love for what I’ve navigated. Tears for that boy that day and for the man since. It’s a moment of astonishing beauty. They feel like pride.

And they feel like they might be hope.

Thank you all for your support.

To be continued.

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I’ll write a bit more one day as I’m aware an update is overdue. That is if I can ever summon the words that can justify the extent of the pain, frustration and loss. Should you be wish to be notified of any future posts, click the ‘follow’ button in the bottom right of the screen.

In the meantime, I post fairly regularly on Instagram and, occasionally, on X and YouTube. Links to these are below. Come say hi. 👋

As above, I must again state that despite the depth of my some of the words used in this post, I am safe and in no danger to myself whatsoever.

Thanks, and take good care of yourself. x

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