A new “normal”: an MS diet and number crunching

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Multiple Sclerosis has been described to me as a series of peaks (which are bad) called ‘relapses’; then troughs (which are good) called ‘recoveries’. The difficulty is no one, doctor nor scientist, knows the height of any peak, nor depth of any trough; their durations, nor the gap between them. The kicker is that the troughs often do not wholly return you back to you starting point – but to a new, worse-off position each time. So relapses are bad short-term – but also bad long-term. This is why the condition is called ‘degenerative’ – and why MS sufferers risk always looking anxiously over their shoulder, fearing the next ‘peak’. There is a whole spectrum of MS “types” – but most are of this relapsing, then recovering, type.

What sufferers are keen to avoid is ‘primary’ or ‘progressive’ MS – here there are little to no recoveries, and the relapses are more frequent and more severe.

Latest symptoms

The symptoms I had early this year seem to have settled a bit now – but I really hope that this isn’t yet my new ‘normal’. I want a fuller ‘recovery’ – not least (because it would be my first) it would allay fears of a more ‘primary-type’ condition. Apparently ‘recoveries’ can take up to a year to occur, so all I can do now is wait.

I’ve been advised to slowly increase my doses of “Gabapentin” because I still have pins and needles (which are continuous) in the tips of all my toes. These make walking or standing for any period of time really uncomfortable. I have hypersensitivity and numbness (the two extremes) in both thighs, abdomen and, less so, on my shins. I have intermittent pins and needs in my left hand – wrist and fingers; and some more personal issues regards my ‘water-out functions’ that require careful attention! I realise that this last symptom should be a goldmine for humour, but I’m feeling a bit past that: last week, I needed the loo 8 times on one 4 hour bike ride; and 5 times during a single night’s sleep (and, yes, I was counting!) It’s an embarrassing disaster waiting to happen.

But it is my vision issues that are the most handicapping, and worrying – my vision gets distorted through a series of factors which I’m trying to better understand. Certain types of tiredness seems to be the main driver. And problematically for my hobby, being out on a bike for an extended period seems to be a reliable cause. Elevated body temperature is a well documented cause of MS vision problems, “Uhthoff’s Syndrome”, and my MS nurse is adamant that this is the case with me – but I remain sceptical that this reconciles exactly to my experiences: I’m convinced that cycling on bumpy stretches of road (which entail a lot of head-joggling and therefore eye movement) are a key contributor. On two rides this week, descending fast on uneven roads was a definite, and almost, immediate cause. I’m going to have to experiment with descending hills even more slowly than I do already (my days of fast downhilling are long behind me anyway!) Whatever the theories though I have been trying to stick to the advice I have been given: to keep my heart rate “out of the red”; and to rest periodically during exercise.

And then, lastly, there’s the symptom of worry. A new concern to deal with – that every twinge in muscle or twitch of nerves might be announcing the arrival of a new bout or symptom. One morning this week I woke up with pins and needles down my right arm. These went within minutes, but alarm bells were sounding.

Reading various MS discussion boards and posts I realise that MS can, and might still for me, get much, much worse than this. There is actually quite a lot of anger on these boards directed at sufferers of “MS-lite” who complain of their symptoms whilst running marathons (inspiring) or riding bikes. Personally I want my MS to be as “MS-lite” as possible. Fingers crossed – I just need to remember to not cross them obsessively to the detriment of my actual life.

I have asked (and will continue to do so) the same question of every health care professional I have met: will cycling exacerbate my condition in any way? The answer has always been “no”. I have just been told that some days I simply will not be able to cycle; some days I simply will not have recovered from a previous ride; and some days I will feel weak and be unable to “fully activate” some muscles.

An MS diet

Upon diagnosis, revisiting or reappraising one’s diet is a recommended first step. There are a number of suggested “MS diets” – which range from the “do not do anything different, just eat healthily”; to the “cut out everything apart from fruit, veg and seeds” – all aimed at decelerating the progression of the condition. These diets all have their devotees and their detractors – but the science behind all of them is unproven. However, adopting a diet towards the former end of these seemed to me to be a low-cost, low-risk approach, with potentially large benefits. As a result I have: gone vegetarian (apart from large amounts of white fish); cut-out foods containing significant amounts of saturated fats (out with chocolate, crisps, ice cream, chips and cakes); ceased to eat fried food; and stopped eating dairy products (the hardest loss to bear has been cheese – which has ruled out pizzas etc). The MS nurse also suggested cutting out caffeine as a way of combating bladder issues – but, at that, I drew the line…

The main source of my saturated fat intake is now in the form of cod liver supplements and flaxseed oils.

The immediate short-term implications have been a significant increase in our food bills (by about 15%-20%); and me losing 9kg in body weight. I am 6″1 and 78kg – so I did not exactly have much to lose. I’m just simply finding it hard to consume enough food to keep my weight on (although this is probably great for hill climbing on my bike!!)

Crunching the Numbers

My assigned MS nurse has been valuably reassuring and I have been hugely grateful for her support. But everyone I speak to is very reticent to give you any opinions on the likely progression of the condition. “No one knows”. But there is also a large element of not wanting to scare the newly diagnosed because, let’s face it, the worst possible case is very bad indeed. So I turned to the internet.

Predictably figures differ. But for a man of my age, newly diagnosed – there appears to be roughly a 15% chance of having a condition at the primary/progressive end of the spectrum. Let’s not beat around the bush here – this basically means that you could well end up being in a wheel chair in 3-5 years.

If you dodge this bullet, roughly 65% of sufferers “require walking aids” within 10-15 years. If you get through this zone of progression, patients’ odds begin to align more and more with non-sufferers – for example, in 20-25 years the probability of an MS sufferer dying of cancer is very similar (well, similar enough) to a non-sufferer.

I also read that of MS sufferers who suffer visual distortions, roughly 3% experience total vision loss at some point during their lives.

I feel as though I need to know such figures – to unveil my hidden enemy – but this is just the tip of the iceberg. This all feels very ‘new’, and I need to find out more…. to draw MS out into the honest open where we can now do battle.

Gabapentine; a hill; and a fight

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Gabapentine

I’ve been taking “Gabapentine”, which seems to have reduced the painful symptoms in my legs and feet. The incessant pins and needles that I’d had for almost a month have improved from pain to mild discomfort. It feels as though I can walk again without having to adopt hobbling pigeon-steps and suddenly this whole bout feels much more manageable. Numbness, hypersensitivity and the occasion spasm, especially in my thighs, remain, but these are completely bearable. My main concern remains the distortions to my vision, which have now crept off the bike and into my daily life. Several times this week I’ve been struggling to focus my eyes at work. There is the possibility that these latest issues might be a side-effect of my latest drug (the list of potential side-effects includes pretty much every medical condition you could think of).

I await my appointment with a consultant.

Buoyed by this improvement in my symptoms and some stunning, sunny weather in Bristol, I’ve been out on my bike. A few rides this week have been an absolute joy – clear skies, dry roads and longer days. On Wednesday, I rode out to nearby lake to meet some of the riders from my club and the route had amazing views across the city, with hot air balloons in the sky. Beautiful – and as good as it gets.

On the way back from that ride, the fog around my leg muscles suddenly seemed dissipate. It had been there for weeks – but then just disappeared in a matter of seconds.  I can pinpoint an exact moment it happened. The sensation almost boosted me forwards – as if muscles that had forgotten how to work kicked back in. Goodness knows the neurological reason for this dramatic change, or an apt word for my reaction… maybe “elated” or “exhilarated”. I had a spurt of excited adrenalin that would keep me awake that night. For the first time since probably November I felt good again – as if something inside me had been unlocked and I was working again.

I was wary the next day and careful not to overdo it. If that was the end of this bout, that was easy.

On Friday, of course, I woke up and the pins and needles were back. My whole legs felt dead again. The bout had not yet given up.

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A hill

There’s a scene I like from the film Batman Begins: Bruce Wayne is in a muddy gaol and is being confronted by an increasing number of “bad guys” that he has been locked up with. He battles to fight them off until the prison guards drag him away, “for protection.”

“I don’t need protection,” he says.

“Not for you,” the guard replies. “For them.”

I want MS to regret being locked up with me.

That day I cycled down to work. With each push of my pedals I envisaged forcing my MS away. Each movement of my legs was another blow landed.

When I got to work I decided not to stop. I just carried on.

I sped up a hill called “Clarken Combe” and only at the summit did I stop, heart racing. (“A really nice day,” I thought.) I felt both euphoric and very bad; a mid-point compromise between the two would not tell the tale. Maybe it equated to a bloodied, but victorious, pub-brawler the moment the police cars roll up.

But my legs felt no worse for the rest of the day. And neither did my eyes. My natural urge was to go out and fight MS again; so, after work, I rode up Clarken Combe a second time. With a tailwind behind me, it was probably the fastest hill climb I’ve ever done on a bike.

<You haven’t even touched the sides of my fight, MS. You’re going to regret being locked up with me. For the rest of your life.>

https://www.strava.com/activities/287229025

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Upon diagnosis, I had bought Roy Swank’s MS ‘Bible’ – “The MS Diet Book”. The ‘bible’ analogy seems an apt one, as its devotees are almost religious with their fervour, as are its detractors.

Swank writes [edited], “It is difficult for people who have been active all their lives to slow down. To have been driven all one’s life by some poorly understood mechanism in the one’s body, and then be asked to cut the speed by a half or two thirds is asking a great deal. At times the patient is like an automobile with less than one gallon of gasoline in the tank. He or she can travel fast for but a few miles, then stutter and stop Pace yourself. Don’t rush. Listen to your body and very carefully monitor and control your desires.”

Much of his book that describes some of the issues, especially the early symptoms of MS, feels as though it has been written personally just for me.

I need to learn. And to adapt.

Maybe fighting MS is like having a fist-fight with the sea. I have always liked the urban myth (?) about the Geordie dock worker who, to prove his toughness, used to try and brawl with 200 tonne frigates as they rolled down the launching ramp into the sea.

I need to realise that there are days when I need to lie in wait. Pretend to be swaying on the ropes – so I can better beat my foe tomorrow. Pulling back from what I’ve always done, what I do, is going to be the hardest thing for me to do.

Heart of England 300km Audax

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Background to the Ride: symptoms and concerns

It’s now a short while since I was diagnosed with MS. I’m trying to work out what this means for me; what I can and can’t do; and the extent to which my love of cycling will need to change.

This last week has seen a lot of MS-related highs and lows as I learn more about my condition, and my reaction to it. My symptoms – pins and needles, hypersensitivity and numbness from the waist down – have not changed.

The eye issues I’m having with my vision now have a medical definition; I’ve dabbled with various medicines; found out more about the complex web that is the UK NHS; struggled to adapt to a new MS-diet; and then, to end the week, I tried to cycle the “Heart of England 300km Audax” – a requisite qualifying event for this summer’s Paris-Brest ride that I still hope to enter.

Vision issues

My vision is a problem. Whenever I’m out on my bike for any prolonged period of time I cease being able to focus. The problem then worsens until I have to abandon wherever I’m going. The week started with me testing these new symptoms: trying to work out how to avoid them; and what triggers them.

I’d done some web-based research that suggested a rising body temperature might be the culprit so (going against years of “training” as a cyclist) I set off for a ride with a self-imposed heart rate limit: neither efforts nor sprints; and a relaxed easy pace throughout. The results were really concerning. I rode home to Bristol from Poole and, after a gentle couple of hours, my eyes started get confused. From that point on, the ride was scary. And slow. So slow that it got dark, which only worsened the issues I was having. I tried to shake away the symptoms, but my brain was playing tricks on me. By the time I got home it was very late; I was very tired; and rather worried.

https://www.strava.com/activities/281026016

By coincidence, the following day I had my first appointment with Bristol’s MS nurse. She was pretty sure that my condition was due to “Uhthoff’s phenomenon”; caused by a temporary rise in body temperature. We discussed its implications: there’s no cure, either of the symptoms or the condition, so just has to be managed. The suggestion was to stop for 5mins for every hour on the bike and never to raise my heart rate about (an arbitrary) 150bpm. Both these rule out future bike racing for me, but I was happy to work on the theories.

Frustratingly the MS nurse also said that the steroids I had been on were the wrong ones – I had been prescribed predmisalone and it should have been methypredmisalone. So the up and downs I had been experiencing as side-effects had been in vain. She put me on a new medicine called Gabapentine which dampens down pain associated with nerve-end sensations.

I continue to pursue an appointment with a neurological consultant and, frustrated by NHS waiting times, I’ve booked a private consultation at the earliest opportunity: in  5 weeks time (at £300 a session!) With all this new information, this week was a taxing one. A couple of nights I couldn’t sleep as I mulled everything over in the early hours. By Friday I was pale and exhausted. On Friday night I took my first Gabapentine -“do not drive or operate heavy machinery” – then set my alarm for 4am on Saturday morning so that I could enter the Heart of England audax.

The Heart of England 300km

The ride started in the rain – and I started slowly. I abided by my heart rate maximum rule; and stopped every hour. The latter was the more frustrating as I had to abandon little groups of companions, but my legs felt surprisingly good on the bike. It was only when I left the bike that bad pins and needles appeared.

An unexpected issue that emerged was that, in a determination to stick to my new MS-friendly diet, I was struggling to find appropriate foods to eat at each food stop. I do not know how much of a benefit this new diet is, but it’s the only thing that I can actively do to manage my condition. Even if it only improves my future chances by a marginal percent, I’m going to pursue it and, psychologically, it helps knowing that I’m doing “something” to fight the otherwise unfightable. So: no dairy; no meat; and very much no saturated fats. As such, the menus at each stop were a killer: delicious fatty cakes; bacon rolls; ham and cheese baguettes… but I had to eat. My day’s nutrition ended up reading: food stop 1: baked beans and toast; food stop 2: baked beans and toast; food stop 3: potato and baked beans; food stop 4: potato and baked beans. My body struggled to cope in this regard.

Regards the problems I’ve been having with my vision, things were fine until around 180km when things started to get a bit unfocussed. The next stop was still 20km away, and I got there slowly and with growing concern. I told my story to the guys with me and one rider’s wife (of 30 years) turned out to have MS. “Enjoy life while you can,” he said prophetically. But a long-ish break really helped – I knew that the end was in sight and could ride the last leg as slowly as was necessary. It turned out that this was very slowly indeed. Partially this was entirely due to non-MS symptoms (which I wasn’t too concerned with): saddle soreness (although this got bad); exhaustion; tired legs; inappropriate nutrition… but, for the last 20kms, my vision issues were back and were a nightmare. I kept stopping. I lay down on the verge by the roadside. I poured cold water over my head. But I had hit a blurry wall – and completion became an exercise in survival.

I finished alone, and in the dark. The marshal at the end looked at me and said – “You look pale, son.” I was pleased that I still look young enough to be called anyone’s son.

https://www.strava.com/activities/283537527

First ride post MS diagnosis: LVIS Audax 200km

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My symptoms were still there. Every morning I still wake up thinking that they’ll have gone. 3 weeks since diagnosis and my legs still feel like two foreign attachments appended to my body. They’re both numb and tingling at the same time – some points have no feeling at all, others smart with hypersensitivity. My feet feel swollen with pins and needles. And I feel tired.

The LVIS 200km

6.30am. The alarm has gone off and I need to decide what to do. I sit up and feel achy. The wind is howling outside and I can hear the rain lashing against my bedroom window. My wife is asleep.

An hour and a half later I roll across the Start Line of the LVIS Bristol 200km Audax. The rain has abated slightly but it is still terrifically windy. I figure that if I get started and my legs warm up, the hollow feeling in my feet will disappear. A couple of guys from my cycle club start with me – which is hugely cheering – and soon we’re cycling up through Ashton Court Park with its view of Bristol and it dawns on me that everything is going to be ok.

At that stage I’d no idea no far I’d get, or how my body would hold up, but I could pedal. The first hill made me feel a bit giddy as my heart rate picked up, but I could still cycle.

A huge tailwind billowed us North to the first checkpoint. I’d checked the route’s loop to see when and where I could abandon if I had to: an hour later we’d be cycling within a couple of miles of my house. I’d see then how I was feeling.

The conditions were hard for everyone: fierce winds and wet roads. I confess that I hid within our little group, sheltering behind other riders, head buried in my waterproof; but no one was complaining. Despite the weather, cycling is, afterall, what cyclists do.

I didn’t want to stop at the second checkpoint, because I knew my pins and needles would return as soon as I stepped off the bike, but we all needed food.  Although I didn’t feel great when we stopped – legs buzzing and feeling alien – I decided to carry on at least a bit further, back in the direction of the start.

An hour or so later, the rain had calmed down and carrying on, up and over the Mendips, didn’t seem unreasonable. Eventually, I got to Glastonbury tired and weakening, but elated too. My early warnings signs were there: my vision was blurring and I was struggling with my body temperature, and I had to accept that it was going to be a tough last section of the ride. It was getting late too; I had to get home pretty swiftly because I didn’t want to be cycling in the dark with blurring headlights if my vision was going to be having issues.

The home leg

Heading back to Bristol my mood was good. I had some good company and enjoyed idle chats at an easy pace, but I was also nervous: the last thing I wanted was an emergency pick-up the first time I’d been back out on my bike. So, at the first opportunity, I cut the route and made a bee-line back to the start. By then, my vision was giving me all sorts of distortions: the sensation was as though I had sweat running into my eyes, but my brow was dry. I clipped a deep pothole that I thought I was missing.

My last 20km were painfully slow, running on empty; but I did it. I could still do it.

Afterwards I sat in my car looking at my pale face in the mirror. This diagnosis is going to change my life. I stared at my own eyes wondering what was going on behind there that I couldn’t see. That no one can see.

On the way home I ate a packet of cashew nuts and felt tired.

https://www.strava.com/activities/276079932

Can you cycle with MS?

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I like cycling.

At the start of this year I lined myself up to enter the Paris-Brest-Paris [PBP] ride – a 90 hour cycle-a-thon, one of the most revered long distance cycle events in the calendar.

In any given week I’m usually out on my bike for about 15 hours. So what does my MS diagnosis mean for me, and for my planned PBP ride?

The first advice, offered to me within 10 seconds of my diagnosis, was “of course you can keep cycling, just take it a bit easier.”

“I commute to work by bike,” I said.

“That should be fine – just go easy if you’re feeling tired.”

“I’m planning to ride a 200 mile Audax this Saturday,” I said.

“Sounds excessive,” was the reply.

I searched the internet. Advice seems to be MS patients should aim to do 3 to 5 half hour sessions of moderate exercise every week. But this should vary with capability and fitness.  My cyclo-commute is currently an hour each way, 5 days a week.

There are 2 issues and concerns for me. Firstly, is one of immediate tolerance. Can I actually keep cycling through whatever symptoms I’m suffering; secondly, long term damage. Is being out on my bike doing me harm – or worsening my condition in any way?

Immediate tolerance is something I can probably answer for myself. I can either cope with it – or I can’t. My current symptoms of foot and leg pain I’m assured are not going to be exacerbated by exercise (when I say “I’m assured” – I haven’t actually been “assured”, this is just what I’ve been told).  But, at the moment, the flow of being out on my bike is the only thing that I’ve found which takes my mind off the pins and needles.  The absence of any leg strength is depressing and exhausting – but I’ve resolved that whenever I come to a hill to use the granny gear and gently ascend at walking pace as commuters young and old slowly overtake. Harder to cope with are my vision issues; and MS-related exhaustion, which arise suddenly and without warning. These are not only a “ride-ender” but also wipes me out for days afterwards with all the impacts on family and professional life. I’m going to blog separately on these in my ride reports – but, if anything is, I think it’ll be these that are the show-stoppers.

Long term damage is harder to resolve. And I’m just going to keep on asking the question of the experts, doctors and anyone who knows more than me. Is fatigue just being tired? Or is it worsening my long term chances? A day in bed is worth it for a weekend of cycling; but increased likelihood of disability is not. That you need rest to recvoer from illness is a given – but how deep into the “red” can you go? A fast 30min sprint, or a slow 12 hour touring ride? Or neither? And, wrapping around this whole issue, is the psychological benefit of being happy something that offsets the potential physical stresses? I don’t think I’m yet ready to concede what has been my passion for over 20 years.

My love of cycling is love of being free. Love of being outdoors and of long descents, and of tailwind speed. But it is also love of the battle. The test. The hair-pinning climbs and horizontal rain. The coffee stop when you were too tired to carry on, or the sudden sea view after 2 hours of ascent. Should these things stop now?

I’ve been told that some elements of coming to terms with an MS diagnosis are akin to mourning (I guess a “selfish” mourning for a lost future that you now need to change?).  I feel as though I’ve absorbed all this new news with surprising ease (but this might well be a failure to actually fully realise it all). And then there are moments which trigger a disproportionate emotional response: I absorbed the need for a new diet quite calmly – but then suddenly felt like tears when I saw the “free ice-cream” voucher than I’d been given for Christmas. I talked to my son about a potential holiday to America, then welled up when he suggested sharing a milkshake at an American Diner. What am I ready to give up? And what can I cling on to?

Post-diagnosis – immediate first steps

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This is new and a bit scary. I currently have pins and needles in both legs – which have persisted for about 3 weeks now without break. My left arm is tingling and I have weird sensory distortions around my waist. I’ve been riding my bike but with neither strength nor stamina, and my feet hurt as if frozen cold.

I’ve consumed a course of steroids which didn’t seem to touch the sides.

So what now?

So first off, I very much don’t want to die prematurely.

I want to live a long, healthy and full life with zero disability. Thank you.

I have a wife and two sons whom I’m loving watch grow up. I’m self employed. I love travelling. I love cycling.

We’re trying to buy a house.

As I type this, the sun is shining. I want to know what I need to do.

There’s so much about MS on the internet (which everyone says to read discerningly to avoid getting misled by too much amateur advice). But if there is a magic MS pill, it doesn’t seem to have been invented yet. The only thing to do at the moment would seem to be to “get all my ducks lined up” to best set me up for the journey ahead – then let the cogs of the health service, and the condition, turn.

The immediate changes are to adopt a new “MS Friendly” diet.  Advice on this varies (predictably!) – but essentially a diet low in saturated fat (or very low) has now become a no-brainer. New shopping lists. Looking at content tables (for the first time in my life). Not drinking milk. Not frying. Not eating red meat. Taking pills – Cod Liver Oil; Vitamin D; and (perhaps) Vitamin B. But these are all “slow burners” – the benefits of which will take months, if not years, to kick in. I’m just terrified that it’s already all too late for me and my condition is already beyond saving…

So of more urgency short term is to get in contact with a neurological consultant that I trust. I have an appointment with the local MS nurse this week and hopefully this will pave the way to better understanding available treatments and other options.

I’m trying to carry on working but there’s a fair amount of emotional turmoil going on at the moment. Unfortunately as I have long benefitted from the freedoms of self employment, I do not get sick pay, nor emotional leave. I’ve just got to do what I can hopeful that this current bout of symptoms will calm down.

And what about cycling?

Well… I started this blog to write about Cycling with MS. The above is all just background. I have struggled to find much reliable information on the internet about athletes with MS (maybe the two are mutually exclusive?) So, the question I’ll be exploring is what MS means for an (obsessive) cyclist. Does it all end here, or just pave the way to new beginnings?

My background to MS

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So I’m now officially an MS sufferer.

I didn’t even know what MS was.

My first two questions were, “Is that bad news?” and “Can I still race my bike this weekend?”

I asked, “Am I going to die early?” and “Am I going to be disabled?”, “Can I still cycle… can I still go to work?”

Yes (sort of), yes, hopefully not, hopefully not, yes (to an extent) and hopefully so.

The causes, symptoms and prognoses for MS sufferers (I now know) are difficult to sum up succinctly. You’ve basically got an issue which you’re going to have to live with for the rest of your (hopefully long) life and manage as best you can.

It’s not curable.

It could be very bad. Could be not-so-bad…

Its development can be managed with diet and drugs. As to the exact path it takes? You are, to some extent, in the lap of the Gods (but, then again, aren’t we all?) It would be extremely dangerous to ignore it, but it is something you can (hopefully) live around (or force it to live around you) – albeit with fingers crossed.

It’s easy to focus on the moment of diagnosis – the big “reveal” – and see this as the point that everything changed. But I guess everything had already changed for me, many months, probably years ago, when I first started suffering from this condition. So I saw my “big reveal” as more of a recognition of the issues that I have been having – in some strange way it felt like vindication or relief. As though I had long known this to be the case, and was at last being united with my destiny.

Now I have read more about MS (more than completely “zero” as had been the case) so many pieces of my own personal jigsaw have fitted together and make sense. Suddenly those tens of trips to the Doctor with unexplained ailments have been justified – the bouts of intense exhaustion; listlessness; inability to overcome minor viruses; repeated days off work; blurred vision. It had become a running joke with my wife about what weird health oddity my body would spring next – over the last 4 years I’ve had blood tests which have shown me to be anaemic; to have low blood sugar levels; high white blood counts; low testosterone. I’ve had eye tests reporting me to have 20:20 vision despite the fact I was seeing in almost perfect double vision. I have known that something was wrong but I just didn’t know what. I had periods of terrible muscle aches that felt like a hangover from the Glandular Fever I had suffered in my teens; and winter-based depressions that I could only assume to be some sort of SAD (Seasonal Adjustment Disorder). There was that weird (and embarrassing) doctor’s visit when I complained that I had developed a strange symptom of urgently needing the loo with only seconds notice…

I had started keeping a “sickness” diary in an effort to find some sort of link between these bouts – but couldn’t find the key. Over the last 4 years my diary shows that I have suffered 5 bouts of extended illness/exhaustion lasting several weeks each time (the worst two bouts lasted almost 2 months each). These were periods when I could work, but only just. I just needed to sleep, sleep and sleep but still couldn’t fight off the lassitude.

I felt like a slightly unhinged hypochondriac. Now I’m a diagnosed MS sufferer with proof that I had a reason to have been making all this fuss. I just wish I could go back in time 4 years and explain to the doctor I first saw what this was all about.