MS Kicking My Butt, And I'm Kicking Back...
Last updated: May 2022
MS came into my life 22 years ago. It arrived with a bang, then seemingly disappeared for a long time. Before it came back with a vengeance and in the process turned my life upside down.
My name is Rolly. This is my story.
I was 27. Married for little more than one year, with our whole future ahead of us, and we were in the middle of planning to move abroad, to Japan, the country that my wife originated from. It was summer, and during my lunch hour, when hungrily biting into a grilled sausage that I had purchased at a food stand, I felt a brief sting in my lip and saw something black and yellow fly away. I can't say whether it was the wasp that felt more traumatized by the experience, or me. All I do know is that we both obviously shared a liking for grilled sausages.
I had been stung in my lower lip. It seemed that the little beast hadn't been willing to share the sausage with me, although I would have happily conceded a few pieces of it. If only I had known that the insect had been sitting right on top of it, happily munching away. So I had been stung again. This was the third time in the period of around ten years. What are the odds?
I remembered the first time, when I was stung in my hand (after innocently scratching my head, where the wasp had been sitting), and my hand swelled up almost immediately and stayed that way for a day or two. And the second time, when I sat down on the floor of the living room and inadvertently placed my foot on top of the wasp sitting on the carpet. They certainly had a bad habit of lingering in places where I was about to put one of my limbs. That time the swelling was a lot worse, and I needed to walk with forearm crutches for several days, as I couldn't put any weight on the foot, nor wear any shoes.
So yet another body part this time: The lips. Not a pleasant feeling.
Within minutes, my lip started to swell up and my pulse to race, while I started to feel dizzy. All thoughts of eating the sausage forgotten, I decided that for the time being I should go back to my workplace and sit down. When I arrived there, I was more alarmed about the shocked faces of my co-workers than about the way I was feeling. I would later be told that my face looked like a cross between Frankenstein and the Phantom of the Opera. So before I knew it, I was sitting in a doctor's practice and receiving steroid treatment to get over the allergic shock I was suffering. And I hadn't even known I was allergic to wasp stings!
One lives and learns...
Within a few days my face had lost its "phantom" look, and all seemed fine. Except, I didn't really feel right. I felt extremely tired a lot of the time. And the muscles in my legs felt weak. I put it down to the treatment I had received, or it may still have been the remnants of the allergic reaction itself. I mean, what else could it be, right?
I thought I was the master of self diagnosis. And that was even before the Internet...
The days turned into weeks and the weeks into months. By October things hadn't really improved. Could those effects really last that long? I decided that exercise might be the right solution. It was time to get into better physical shape anyway. So I took up jogging. Which I had never liked, but anyway... However, I felt totally wiped out after each session. Must be really out of shape, I thought.
Come November, and I had given up on jogging, because by now I had increasing trouble just WALKING. My balance was off. My leg co-ordination was rubbish. When walking beside my wife, I leaned into her for support. To outsiders it must have looked as if my wife was walking me home after a few drinks too many. I could actually see the contempt in their faces. Pissed in the middle of the day, they must have thought. At work I had to hug the walls on my way to the lift or the bathroom. I was so unstable on my legs that one of my co-workers, who I knew to have had MS for many years, offered me his forearm crutches on one occasion. Which I declined. I mean, come on! What would everyone else think?
Yet, despite my wobbly ways to get around, nobody seemed overly concerned. Everyone around us – including my colleagues at work – knew about our plans to move abroad. It's a stressful time to do so, right? So many preparations, all the packing, the uncertainties,... The general consensus was that I was simply overwhelmed by it all, and that it was somehow messing with my body. Pure and simple stress. It was all too easy for me to accept this 'logical' answer.
Until it got to a point where I told myself that this was simply not normal, and that it might be a good idea to see my GP. So I went.
When sitting in the doctor's practice, I told him all about the allergic reaction and our planned move abroad, either – or both – of which must have been responsible for my walking problems and the constant tiredness, right? I expected him to prescribe me some pills that would have me back to normal in no time, so that we could go back to business as usual and get on with our lives.
But he didn't seem willing to prescribe me any tablets. Instead, he asked me about my vision (what's THAT got to do with anything, I thought), tapped a small hammer on my knees, asked me to close my eyes and touch my nose with either hand (it might have seemed like a fun game for kids, but I didn't really have time for this – besides, it was very much hit and miss...), and then to walk in a straight line, putting one foot in front of the other, again with my eyes closed. And no, I hadn't been drinking, if that was what he was worried about. Though my meandering ways could easily have convinced anyone that my alcohol level was a teeny weeny bit too high...
After a series of what seemed to be very odd tests, he sat me down and said with a face that revealed nothing: "I will have to refer you to a neurologist".
I didn't think much of this. OK, so the allergic reaction (or the stress of the impending move, or both) must have been messing with my nerves. So if I get the pill from a neurologist instead, so be it. The only thing that I found slightly unsettling was the fact that he made one phone call and had an appointment with a neurologist for me for the very next day. Aren't those specialists always super-busy, so that you have to wait for weeks, if not months, to get an appointment? What warranted such VIP treatment? Either his powers of persuasion were amazingly strong, or something was seriously wrong with me after all.
One day later, and the same tests and questions again, this time at the neurologist. And then the bombshell: "I will have to admit you to hospital immediately for further tests". What??? I didn't have time for this! I had things to pack, preparations to make. Our departure for Japan was planned for January, only about two months away! And even more importantly at that very moment: My car was still at my workplace, and I had taken a cab to the neurologist's practice. The hospital, however, was dozens of miles away. I would need to go back to the office and pick up my car, then go home to pack a few things for an overnight stay at the hospital, etc., etc.
But when I voiced those concerns, the neurologist just stared at me, then stated blankly that I was not fit to drive, and that I needed to be admitted straight away. Was there anyone I could call to pick me up and bring a few things along?
My wife was at work, and she didn't drive. So I called my parents and gave them the gist. I cannot even imagine how they must have felt upon getting that phone call from me. To me, it all felt kind of unreal.
Then followed one week on the neurological ward of the hospital. I had no idea what was happening to me. Tests and examinations every day, interrupted only by physical therapy. Since seeing my GP, my walking had become a lot worse. My balance was absolute rubbish, and I began to lose sensation first in my feet, then in my legs, gradually working itself upwards. I seemed to have lost much of dexterity in my fingers. My left side seemed to be affected more than my right. It felt as if I was literally falling apart physically.
An MRI of my brain. Another one of my spine. Oh, so THAT it was it felt inside an MRI, I thought, after hearing about it from my co-workers. No exactly a pleasant experience. No music for me. My colleague had talked about nice music. Not fair. The only thing I could hear was that annoying hammering sound. Thump-thump-thump. But the sound wasn't really that bad. What I found more difficult to deal with was that I had to lie absolutely still and had nothing to do. I tried to think of some nice things, but then the thumping of the machine broke my concentration.
Later in the day a spinal tap. Despite warnings of a severe headache, I was fine afterwards, thank goodness. I had really feared the lumbar puncture from the moment they had announced that they were going to do one. But it went fine. Easy-peasy. Why had I been so worried?
One day they took me to another room, sat me down in a chair, attached sensors all over my head and started sending shock signals through my body. They had said it wouldn't hurt. It did. A lot. It felt like being electrocuted, and I got strangely reminded of the scene in "One Flew Over The Cuckoo's Nest", where they used electroshock therapy on the main character played by Jack Nicholson. I for sure hoped I wouldn't end up the same way...
Another spinal tap a day or two later, this time with dye. In contrast to the first one, where they had me lying on my side in the hospital bed, this time I needed to be sitting up while they put the needle into my spine. The moment the needle was in, I started sweating, then I passed out within seconds. Then weird dreams, where I was a driving a car, but losing control over it. Voices in the distance, calling my name. I thought I was going to crash any second, and die. It was horrible.
I was later told that I did indeed pass out, but they had to keep my body upright while the needle was still in. They did get to finish the procedure, luckily. Because I didn't think I could go through anything like that again!
Then started the monster headache. Earlier I had thought I would die. This time I WISHED I would die.
I had to lie flat for 24 hours. When I finally got up from my bed, the headache was still there, but miraculously my walking was much, much better than the day before. Hmm, so I was on the mend. And about time, too, I thought!
At the end of the week a talk with the doctor: "Both the bad and the good news is that we didn't find anything." So what had they been looking for, I asked. I was told that they had expected a brain tumor, but couldn't find one. Phew! So that was the good news. But slowly losing the ability to walk and not knowing why, that was the not so good news, I guess.
Not being completely new to MS (not only had I seen my co-worker struggling with his walking, with fatigue, stiff fingers, etc., but in my early 20s I had a very good friend who passed away from complications from progressive MS, at the same age that I was at the time), I felt courageous enough to ask the bold question: "Could it be multiple sclerosis?"
The answer was that a lot of things pointed in that direction, that they had, however, not been able to confirm it. Which was good, right?
And then they sent me home, saying that there was nothing else they could do for me. Despite the lack of clear answers, I was more than happy to leave. Still better than those 'strange experiments' they had been conducting on me.
By this time we had already postponed our planned move by six months, as there was a lot of catching up to do. But I was feeling much, much better. Still a bit weak in my legs and feeling tired a lot, but other than that, I was able to function normally. Yay!
At least for a few weeks...
Then it started again. The general tiredness and the weakness in my legs increased. My balance got worse again. More leaning onto my wife when walking, or hugging walls where possible. At the hospital they had told me that in the event that I should feel worse again, I should come straight back there. So I went.
When I was asked to walk a few meters in front of the hospital neurologist, I fell and couldn't get up again without help. Did that mean that I had failed the test, I wondered. She admitted me again, right there and then (I guess there I had my answer...). On a Friday afternoon. I tried to persuade her to admit me on Monday, as over the weekend there wouldn't be much happening anyway. But she declined.
Another phone call, this time to my wife, explaining that I would need to stay, and asking her to pack a bag with the essentials and bring it to the hospital. She didn't sound too pleased, as she knew that this meant that she would have to spend the entire weekend by herself. And she was worried about me, of course. Although she seemed to be of the opinion that if nothing conclusive had been found the last time around, there probably was nothing really wrong with me in the first place. Probably just stress. Yeah, right.
So another week of more of the same, including another MRI and another spinal tap. But this time I improved a lot more quickly, in fact only two days into my stay. After about three days they took the physical therapy off my schedule, and I felt so good and strong on my legs that I felt like an imposter. With time to kill in between tests, I played cards with the patients I shared the room with. And felt really annoyed when they called me away for another examination because I was winning... What was I doing in the hospital anyway, amongst all those sick people who really needed medical help, while I was just fine? I started to regret the fact that I had gone back there. I could have had a nice and relaxing weekend with my wife at home, and then gone to work on Monday. I felt like a fool. A fool fooling others and using up precious hospital time and facilities for nothing. I pushed them to discharge me as soon as possible, though this didn't happen until Friday, as they wanted to keep me for observation.
Obviously they didn't trust my judgement...
On the day of my discharge, I needed to have another talk with the neurologist. Yet again, they had found no clear evidence of multiple sclerosis, nor of any other condition. Not that I really cared at that point, as I felt – for the first time in months – like my former self. So when the doctor said "We believe it might be MS, even though we cannot really prove it at this point", I was gobsmacked.
So what should I do? What should we do about our plans to move to Japan? And matter-of-factly she answered that we should just go ahead. Her reasoning? There was a possibility that the whole episode had been due to stress after all, so it might be a mistake to change our plans. And if it indeed turned out to be MS, then there was every chance that it might be a mild form. And besides, the medical field in Japan was just as good as in any other advanced country, so if need be, I could get the necessary medical care there just as I could here.
So, I had 'possible MS', which meant that I possibly didn't have MS at all. I decided I could live with that. And since all my symptoms had practically disappeared over night, I felt that the odds were definitely in my favour. In other words, no MS. Chapter closed.
Six months later we moved to Japan, all but forgotten about the symptoms and the two hospital stays.
It wasn't until a few years later that small things started creeping up on me again: Weakness in my legs, foot pain, fatigue, tingling and numbness in my feet, leg cramps, sudden excruciating pain in my knee, losing my balance, dropping things, frequent urge to go to the bathroom, residual urine, bowel issues, swallowing issues, back pain, cognitive issues, and the list goes on. All happening at different times and lasting for anything between a few minutes to several weeks, some looked at by a doctor, but most seemingly too insignificant to warrant a doctor visit. And each time there seemed to be a simple explanation.
Granted, when those weird things happened, MS did – briefly – cross my mind. But then I recalled the words from the doctor at the hospital. Besides, if it had been MS in the first place, it wouldn't just have disappeared for a few years, right? And there was a perfectly logical explanation for those things anyway.
My wife did her part in assuring me that it wasn't due to MS. Weakness in my legs and foot pain were explained with my squash sessions. Fatigue with too much work. Tingling and numbness with a trapped nerve, the knee pain with over-use, the frequent use of the toilet and the residual urine with exposure to air conditioning, and so on.
Is that what denial looks like?
Eventually, in 2006 and almost nine years after my first episode, the symptoms got too numerous and too frequent to be ignored, so I went to a doctor, who instantly referred me to a neurologist, who ordered a couple of MRIs. This time, the lesions on my brain and spine were all too obvious after an MRI, and I was given the definite diagnosis of relapsing-remitting MS.
It didn't exactly surprise me. It merely confirmed what I had suspected all along. So when my wife heard the diagnosis and broke down in tears, I didn't quite understand why.
What followed were years of increasing numbers of relapses, each of which left some damage behind. I had to start using a cane in 2007, then crutches in 2008. I was put on AVONEX for a while, then REBIF, both of which had no visible effect. In 2010 I had to use a wheelchair for greater distances, while still relying on forearm crutches for shorter distances and in the house. I was put on TYSABRI, but it turned out it was damaging my liver, so it was discontinued.
In 2011/12 I had several severe relapses and hardly recovered from them at all. In May 2012 I was officially upgraded to secondary progressive MS. Although I had kind of seen it coming and shouldn't have been surprised, it still came as a shock to me. Big time. While I had brushed off the initial tentative diagnosis and took the definitive one in my stride, this was different. It felt like a game changer. I fell into depression and had to start taking 'happy pills' to get me through the day.
From early 2013 I needed a walker even for very short distances, and after being off work for extended periods, I had to reduce my time to two mornings a week, then had to retire altogether in late 2013, when my cognitive ability had been reduced to a level that made it impossible for me to function properly in the workplace, and when my legs packed it in altogether and I was fitted for a power wheelchair to get me around easier than in a manual one.
But hey, walking is so overrated!
The powerchair gave me back a lot of freedom, after struggling on crutches or with propelling a manual wheelchcair and using up all the little energy I had. And I was able to outrun (or 'outroll') most able-bodied. And I still had the use of my hands. It may not have been the life I had envisioned, but it was OK. And at some point I was even able to stop taking the anti-depressants.
Fast forward to now.
4 years on, and I have to rely on a power wheelchair fulltime and can no longer transfer by myself, meaning that I spend all day in my wheelchair. I can't leave the house by myself and am therefore housebound during the week, when my wife is at work. It has become more difficult to sit upright and hold up my head, so I spend more time in a reclining position. My left (thankfully non-dominant) hand has given up the ghost, while my right hand is getting weaker, too. My wife is my main carer in the mornings, evenings and at weekends. During the day someone comes to our house. I need help with pretty much everything: I can no longer dress myself or do any other personal care tasks. I need help with eating. I'm incontinent, wear a condom catheter and pee into a bag. Well, better than in the pants, right?
As I had severe bowel problems, this year I had an ileostomy and now poop into a bag attached to my tummy. It requires quite some maintenance, but it has lessened the pain I was in and thus improved the quality of my life. Just another transition to go through, like so many before. I'm constantly reinventing myself.
Anyone reading this an thinking how unbearable this all must be, let me assure you it's no picnic in the park. If anyone had told me 20 (or even 10) years ago that this was going to be my life in the future (and at the age of only 49), I would have told him that this can't surely be worth living, and that I would never accept a life like this.
The thing is, you adapt. You envision the worst case scenario that you would be willing to put up with, and beyond which point you would not be willing to go, and then you pass that point, and the previous 'worst-case scenario' becomes the new normal. You have a new 'worst case', and you pass that, too. And so you go on, and each time you adapt to the new realities.
It's hard, no doubt about it. I wake up in the morning wondering what the day will bring. Will it be a good day, with limited spasticity and pain, with a fully functioning right hand and a clear mind?
Or will it be one of those so-so days (which make up the majority), with regular, but bearable pain, a reasonably functioning right hand and a reasonably clear mind?
Or is it going to be one of the bad days, when getting me dressed and transferring me into my wheelchair is taking forever because of the spasticity in my legs, with brain fog preventing me from forming clear thoughts in my mind, and with a tremor in my right hand, which prevents me from typing or doing anything useful at all, and having to be fed like a baby?
I most definitely wouldn't have chosen this life, but since the choice was made for me, I thought that all I could do was to get used to it. Things could always be worse. OK, they're pretty bad right now, but they could still be worse. Trying to stay positive is very important, and my wife helps me with that. I certainly couldn't do it without her.
People sometimes ask me, what will I do if I lose the use of my right hand completely? Well, I tell them that I will burn that bridge when I've crossed it...
I'm grateful that I can still wake up in the morning. The alternative to that doesn't sound very appealing at all.
Some days I have meltdowns and just cry, wondering how I can go on like this, or asking myself why ME? But I know that such days are followed by better ones, making it all worthwhile, despite all.
I used to say that I'm kicking MS butt. These days the MS is mostly kicking mine, but that doesn't mean that I can't kick back once in a while!
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: