What’s MS Like?

movingHmm. As they say, every person with MS has a unique set of symptoms, so no two are alike.

However, I get asked a lot, ‘what does it feel like to have MS?’.

Quite possibly the hardest question ever.

Imagine this: you wake up every morning, flex your hands, feet, arms, before stumbling out of bed.

What works? ¬†What doesn’t? You find your phone. And drop it. Curse. Paw the carpet to find phone then trip over shoes, falling into the landing and ending up face down in the laundry basket.

Sway downstairs, knocking into the bannister. Weave your way to the kitchen. Coffee. Think about a shower. The pitfalls. Take a deep breath. Teenager has used your expensive shampoo. Again,

Consider nodding off at kitchen table. Sort lunch money, blazer, Teenage Tantrums, lost paperwork. Head to work.

Fall asleep in van. Yawn a lot. Mix up numbers, measurements, tiles. Find a quiet corner.

Back home, dread cooking a meal and dream about a private chef. Make meal, clean up, ignore leg pain, can’t ignore hands, drop everything. Clean kitchen floor, badly.

Essentially, MS is a surprise. Who knows what I’ll wake up to? It could be tripping, falling, stumbling, umming or ahhhing. My brain seems unwilling to move on from my first recorded relapse, the one that affected my speech. I mean, me? It’s almost an insult. Especially when I try to reply to the good-natured building site banter. ‘Oh, yeah, give us a minute, yeah, and I’ll think of somefink witty to say’. Too late.

MS is an oppressive bully who just won’t give up. MS will push you around, kick your feet from under you, prod you, squish your memory and generally make your normal day-to-day life a living nightmare. It will make you incapable of paying by cash (my nightmare). Coins scatter everywhere. It will make you nervous at checkouts (um, can you slow down, just a little bit?).

MS is a malevolent shadow, mimicking your actions with a macabre comic touch. Anything you do, MS will magnify. A slight stumble on a doorstep will become a massive trip through your own front door. A twitch will become an embarrassing tic you can’t get rid of. You will fall out of cars, trip into stores and scan the pavements for cracks. And in amongst it all, there will be the Clinical Neurological Fatigue (TM).

And that’s the next problem. Try explaining that to people. ‘Yup, I have to sleep a lot’.

‘Oh, me too. I love sleeping. You’re so lucky!’

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4 thoughts on “What’s MS Like?

  1. hmmm with all the question I get asked about MS, this has never been one, thankfully because I don’t know how I would answer, don’t think you really can. Ask me now, and I would say a lot of pain no matter how I move, tomorrow, I could be happy as a fish in water because the pain is gone but my hands are still numb but better then the pain all the time…hard to answer

    hate hate hate when people say they get tired too, that I do try to set straight. hubby gets it since he has fibro and has fatigue problems himself, but unless a person suffers from fatigue they will really not understand themselves.

    • stumbling in flats says:

      It’s weird, I get asked it a lot! But like you say, so hard to describe. Almost impossible without sounding like I’m whingeing.
      And as for the tiredness stuff, don’t start me! My absolute bugbear. I get teased for working part-time, but what people forget is that I’m also bringing up The Teenager, running a house single-handedly and doing an MA. Not very part time, lol.

      • exactly! if people with MS actually answered the question honestly, we would been seen only as whining :/ a person will never know what MS feels like until they have it, simple as that (not that I wish it on any one)

        • stumbling in flats says:

          Yup, such a random selection of weird and crazy symptoms. Anyone listening to us talking would think we were playing one-upmanship :-(.
          My current bugbear is the Boss pointing out every single trip hazard when I already have them firmly in my mind. Sometimes it’s easier just to sit on the stairs and look through Twitter. Sigh.

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