My background to Multiple Sclerosis

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?” [I’m afraid so] and “Can I still race my bike this weekend?” [yes]

I asked, “Am I going to die early?” [hopefully not] and “Am I going to be disabled?” [again, hopefully not], “Can I still cycle? [yes, to an extent]… and can I still go to work?” [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 – unique to you – 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 all sorts of blood tests. I’ve had eye tests which reported me to have 20:20 vision despite the fact I was seeing in almost perfect double vision. I knew 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 always been a sociable drinker of alcohol but the hangovers started getting worse and worse – then I stopped drinking almost entirely because even a single unit of alcohol was rendering me bed-ridden the next day.

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.

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