I don’t know why I did that. Put a ‘K’ in article. Just because it’s kind of cute I suppose. It has nothing to do with what follows so if you’re expecting a knee slapping belly shaking laugh, accept my apologies and feel free to move on. If you have MS you might want to read on though – thanks champ!
Earlier in my blog I called myself a Master of MS, an expert in my field. Of course there is no such qualification or expertise. I still think of myself that way though, approaching 20 years with MS I’d say I’m over-qualified actually. Ah.
So what am I? Technical I am not. Writer, thinker, I am. By my own definition of course. You might not agree. That’s fine.
I’ve recently discovered that there are squillions more people with MS out there.
I imagine you’re thinking I’ve been a bit blind, how on earth did I not know that? Me, the expert. Well, let me tell you, us people with Multiple Sclerosis are damned good at keeping secrets, damned good at hiding our problems and pains. So guess what Sherlock, I double double dare you to find someone who’s been newly diagnosed with Multiple Sclerosis. I do put one condition on this challenge though, they must have been diagnosed at least three months prior. Give the poor devils time to find out what the hell they’re dealing with, give them time to cry, give them ‘why me’ space to wallow in. All of that is necessary, in fact, essential to the newly diagnosed.
Once they’re over their first episode, the first awful taste of disability – then you’ll see absolute brilliance. With a sprinkling of scullduggery. Because MS (usually) is diagnosed at the “Relapsing Remitting” stage. It comes, and it goes. Just like that. It smacks you in the head, deposits a few scars on your brain, then nicks off. Well, it pretends that it’s not there. And the person who got the head smack carries on like nothing happened. With maybe some left-over pins and needles, or feeling a bit numb here and there, or maybe a little blind spot in their vision, any number of little things can be left behind, and sometimes it seems like it’s completely gone. Piece of cake.
And so we pretend. We trick you. We lie. With the best intentions. Don’t want to make you feel bad. So what if we have to hold on to the rail when we walk up or down the stairs? We’ll laugh, we’ll say ‘don’t mind me, you go ahead, old age is getting to me’ haha. And you’ll think that we are so funny, old age indeed, goodness she/he’s a scream isn’t she/he. Haha.
We’re not telling you. We’re not letting you think there’s something wrong with us. Why is that? I can tell you. It’s because that's how society is. Get yourself a medical condition and see for yourself. Go on. Suddenly people see you differently. Like you have suddenly turned into Mrs Stupid. MrsShesgotadiseaseandIdontknowanythingaboutitbutshecantberightinthehead. Maybe that's a bit harsh, not everybody treats us that way. Sad thing is, some do. And believe me it is infuriating. I'll write more on my personal experience of society attitudes, another day!
So we become masters of deception. If you're not super-close family, we won't tell you, if we can get away with keeping schtum we will - MS is shared on a strictly 'need to know' basis. 16 years I did it for. And then my legs gave me away. Can’t hide the fact that I walk slow and often with a limp, no hiding now. Dammit.
So these days I have a whole new world to get comfortable with. The world of walking sticks and assorted walking aids, the world of having to think hard every time I want to go anywhere, is it easy to get around, do they have disabled access, how far is it from here to there, how will I get there, and when I get there will I be able to do whatever it is I’m there for anyway?
It’s taken me months to get used to carrying a walking stick in public, but I’m ok with it. I think. A case of having to really. But I am that far at least. Nobody tells you that it takes getting used to, its not easy having to carry a stick everywhere. There’s no beginners course for that, you’re on your own. I’m learning though, despite some close calls I haven’t injured anybody yet. Doing well really.
Exit … Stage Right?
Having my MS progress to the next stage, it’s like having the initial diagnosis all over again – a time of outright shock, how could this happen? All that stuff. Real disability staring me fair in the face now. Then again, it might not be so bad, might stay like I am for years yet, and I’m doing ok. Same as always really, nobody knows, so just hang on tight and do what you can with what you have. That’s where I am.
And that’s all for now – thanks for dropping by, see you again real soon. (Insert smile here).