Sunday, 8 June 2014

You've got what???

These days, thanks to the many types of publications available to us - including this interweb thingy - people are much more aware of things in general, and the population seems to have a fascination with all things even vaguely medicinal. Long gone are the days when 'brollies' were 'umbrellas', 'prams' were 'perambulators' or where we 'took' our daily newspaper in the 'withdrawing' room rather than simply the 'drawing' room (although I think even that sort of room is now a 'reception').

Given this modern abundance of information, it came as something of a surprise, after my diagnosis, to find out just how little many people know about the condition. And to be fair, that included myself. One person even commented, when I mentioned my MS, that he really liked their ready-made desserts. 

The big surprise for me was just how varied the symptoms are, so I guess I shouldn't be too shocked at how inaccurate non-sufferers' impressions of MS can be. 

My tolerance limits were, however, severely stretched when a particularly 'concerned' acquaintance took me to one side to ask very reverentially how long I thought I had left - the implication being it was either 'weeks' or 'months' at best (to judge by their seeming relish, 'hours' might been their personal favourite). They were left in serious doubt when I said that I would survive for many years as long as I didn't have the type that meant my head would fall off unexpectedly if I heard a sudden loud noise. I don't even feel particularly guilty about following up that last sentence with a loud, fake, sneeze.

Symptoms are, head-loss aside, widely varied, of course, and I don't find any of them remotely amusing - although I do like to laugh about them. Perhaps that's one of the symptoms? Acute oxymoronism. 

In my case, as the proud owner of the letters SPMS, my own effects are centered around loss of sensation. This is especially true of my lower limbs,so balance and muscle fatigue are my biggest bug-bears, but I consider myself more fortunate than anyone who suffers visual or mental impairment. (Although I grant you that 'small mercies' might apply to that statement - and probably not for anyone who really does suffer from visual or mental impairment).

The progressive nature of the condition means that we have time to adjust, no matter that the adjustments are constant, and it's worth reminding ourselves from time to time that if the condition afflicted us just as it is today, all of a sudden, we probably wouldn't be able to cope.

Don't get me wrong, I'm not saying MS is a benign and kindly condition - neither adjective apply to such a bastard ailment - but it could be worse. I suppose. Maybe/

Anyway, my point is that people in general don't realise how MS affects us. Let's face it, we have to ask fellow sufferers about the specifics of how we suffer, so why should anyone who doesn't have it and has never faced it before be able to understand our specific weaknesses? Quite often, people are overly sensitive as a result of their own lack of knowledge and they may even over-compensate. We should never take advantage of that sort of ignorance (although I would say that comments about unexpected head-loss are acceptable, of course), and as much as we want to smile about things and pretend that life is still wonderful, I strongly believe that we have a duty to them - and to ourselves - to be fair and honest.

Come to think of it, that's pretty much how we should all behave anyway.

By the way, has anyone seen a rogue cranium rolling around?

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