Lots of people don’t know very much about MS, and I’ll come clean, I was one of them.
Until I was diagnosed.
Suddenly I had to find out everything I thought I’d never want to know. Loads of information about the spinal cord, the brain, the nerve fibres, the relapses, remission and everything in between, all helpfully laid out in brightly-coloured booklets.
But there are other, stranger things about MS and how it affected me, that no one tells you about. Since I’ve been living with MS for years now, I thought I’d spill the beans. Here are 9 things I wish people knew about my life with MS:
My MS brain allows me just so far, recounting the best joke ever, with my captive audience hanging on every word (in my mind, anyway), and then… blam, the punchline’s gone. This is a result of the cognitive issues that go hand in hand with MS, and while I have been managing it fairly well I’ve given up on funny stories. Now my repertoire consists of only one joke: ‘So, a woman walks into a bar.’
Magnets that only attract crockery and glass. At least it feels that way. Impairment in muscle function and coordination is a central feature of MS. Put me in a room with a cup or a glass or bowl anywhere near me, and I’m duty-bound to draw it towards me and knock it over. It could almost be a superpower if it weren’t so annoying.
With MS heat intolerance, or to give it its proper name, Uhthoff’s Phenomenon, the tiniest bit of heat gives me an English Rose flush. I have to be careful though, because too much heat and English Rose quickly turns into Marbella Leather.
No jokes. If I let it, my MS fatigue could easily become a full-time job. I can sleep whenever, wherever and at the drop of a hat. It’s exhausting. When my son was at school, I even taught myself how to sleep bolt upright on the sofa, eyes half-open, ready to spring into action when I heard his muddy rugby boots clomping through the front door.
When you’re busy looking down all the time, wary of the next foot-drop or trip, it’s worthwhile making it into a hobby. The streets in Stratford-Upon-Avon were particularly interesting, as I potentially walked in Shakespeare’s very footsteps. Every cloud…
This relates to my first point about not being able to tell jokes anymore. My memory is terrible, so feel free to spill all your deepest, darkest secrets. I’ll give great advice and provide a comforting ear, plus popcorn, but I’ll have forgotten it by tomorrow. I make an excellent friend.
I’ve had neuropathic pain in my legs for years – that buzzing, tingling, tapping sensation. I describe it as ‘toothache of the legs’. It’s constant. But one day at work (I’m a builder, it would have been a bit trickier if I worked in an office) I went to a site that was just a sea of mud. I put my wellies on and sank into it. Utter bliss.
When the worst has happened, what’s the worst that can happen? MS made me bold and a little bit cheeky. I followed my long-buried childhood dream of writing. So now I write. I speak up, I campaign (in a small way), but enough to be noticed. I now live the life I always wanted to live, although …
I’ve been single since MS, my then-partner disappearing so fast round the corner, I could see the dust clouds. I joke that my dating profile would read, ’45 year-old divorced female with a teenager, a bit fat (me, not the teenager), can’t tell jokes and will never master the art of eyeliner. Oh, and I have MS.’ It’s not great, but I’m ever hopeful.
This isn’t an exhaustive list (I’m liking the pun), but just some of the many sides to MS. It takes a lot of trial and error and a whole lot of adapting to get used to accommodating MS as a life-long partner. But it is here and I guess we have to deal with it as best we can.
Above all, MS is unique to every one of us, and yet, despite this, we all connect, swap stories, tips and hints. Together we can live brilliant lives, no matter what MS throws at us.