One Year Later (ish)

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They say time flies when you’re having fun…so last week I had my first annual consultant MS check-up.

Actually it was with the registrar – and was 4 months late – but my MS-birthday was dutifully celebrated by booking in my next bout of chemotherapy for October this year.

MS is no longer a shock; nor an excitement. I’m still naive as to what MS means for my future – of course, no one know what’s round the corner – but I am now one year closer to knowing what’ll happen for the rest of my life.

Hopefully, if I live to 90, I’m barely only 2% of the way to a true understanding of my MS – I like the thought of me dropping off to sleep in the year 2066 with the sudden thought that – ah yes – so that’s what it meant when I was diagnosed….

Things are becoming clearer – at least, more familiar. I’m not sure that this makes me any wiser – but my initial thoughts, and advice received, are now largely bearing themselves out; like I’m now experiencing what was previously just an academic exercise.

Upon diagnosis I wrote:

“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 yourself – 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 live around (or force it to live around you) – albeit with fingers crossed.”

A year later, I don’t think I can really add too much to that.

But, if I could go back in time and talk to the “me” of a year ago, there are maybe a few things I could pass on:

  • Firstly, be enormously grateful for the diagnosis itself. Not only because of the pharmaceutical, chemotherapy and treatment options that it entails – but because of its impacts socially and marital-ly. I hope I’m not going around begging pity or sympathy, but such a diagnosis offers a crutch to explain those unannounced bouts of vertigo and those disproportionate waves of tiredness and fatigue; my abstention from alcohol and careful early nights. Weird bouts of listlessness or post-viral exhaustion are no longer met with such frustration – I now have a genuine ‘excuse’. (“O pity the patient”). The first people I told, I felt like I was letting them in to some big secret – now I can be more sober and can talk about it matter-of-factly, aware that it really is not that big a deal (touch wood)- and barely registers as a dot on most people’s days
  • Secondly, living with MS is increasingly bearing itself out as a psychological battle, rather than physical one. I have never been in bad pain (touch wood again) – my MS is more of a millstone of niggles, discomforts and feeling crap. These are symptoms that I can live with – socialise with; work with; cycle with; and even laugh with – but they demand to be hit head-on by a never-ending positivity. Smiling, despite the crap. It’s when the doubts creep in and, for whatever reason, I struggle to lift myself, that the millstone has weighed heavy. When my spirit has needed some sleep and the adrenalin has run dry, MS has proved tough – at times, I’ve reached points when I’ve just had enough of too many, and such incessant, low level niggles and discomforts. Residual symptoms, by definition, are there the whole time, so, strictly, they impact everything. Glass half-full, they ruin nothing; glass half-empty, they ruin everything.
  • And, thirdly, (believe what you feared) MS is indeed an unlucky thing to have – but it’s not that bad. Things could be so much worse – and the things that others have to live with make me embarrassed should I make any fuss, or should any fuss be made of me. When I was diagnosed I kept asking – “but what’s so bad about it?” – “if it’s not so bad, when I tell people about it why to they react with shock?!” I actually now like the fact that have had a new MS-friendly diet to adopt. MS has sharpened the joy that I feel and my enthusiasm for seeking it out. It’s given me more perspective as to what matters and removed any feelings of self-conscience about who I am and how my body works.  I can now face-up to one of my issues that had been hiding for so long and dispense with all those undercurrents of uncertainty and self-doubt: it feels as though my Yin and Yang are now more aligned and I understand myself more.

At times, I still feel as though I have a lot to deal with. Must be the obsessive control freak in me that mulls all these new emotions over and over again – until they will start to make more sense and feel familiar. I escape out on my bike and the swirling thoughts start to calm into a more orderly flow of currents. Sometimes, though, I cycle and my legs give out before the mental-knots have been untied – but, even then, the skies remain so huge that my issues still shrink, dwarfed by the outdoors.

There’s more to find out – in time, my new sense of self will have been built anew. But at the moment, I still puzzle about what or who I am: cycling 200 miles with dust and sweat marking the creases in my brow; or suffering the indignity of being sat down by an MS nurse to be shown how to use a catheter so that I can better get through the day. No one said it’d be easy. But I ride my bike; value my friends; and, despite this troubling ‘drop-foot’, I can’t really imagine anywhere else I’d rather be.

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