I was diagnosed in 1999, but had symptoms going back to 1988. It all seems a long time ago now, but I remember how it felt. I remember thinking everything was over. I remember thinking I’d never get what I wanted ever again. And I remember following the slow up and down dance that had all those crazy steps including anger, no that’s not strong enough, rage, through denial, then reflection and maybe a kind of calm until eventually to a kind of acceptance. Eventually.
Everyone is different, and everyone’s MS is different. Some people have it worse than others. But make no mistake, having MS is shit. There’s no way of getting away from that. When you get MS there is suddenly stuff you can’t do anymore, and over time there gets to be more and more of that stuff. It’s the disease that keeps on taking.
The thing is though, as time has passed I’ve found myself getting used to it. I’ve now had MS nearly half my life. It feels like part of me. Sometimes it still gives me a bit of a shock, when there’s a new something I can’t do, or a symptom I haven’t experienced before. But mostly I know what’s going on, and mostly I can cope OK.
And just what do I have to cope with? Well first of all there’s the lack of mobility. Unless I’m in bed I use a wheelchair. All the time.
Then there’s the lack of sensation. I often can’t feel the difference between things I touch. And the lack of strength. I find it hard to pick things up, to move things. I have problems with bladder control, if I need to pee then I’m likely to need to pee NOW. And then there’s fatigue. Now I know everyone gets tired but believe me this is different. MS fatigue can come at you suddenly, with little or no warning, and it can show itself in all sorts of ways. I could be talking and start slurring my words or misspeaking, or I forget things, people’s names, common words.
What else is there? Well there could be a sight problem. I’ve had optic neuritis, which is like looking at the world through a thin and out of focus gauze, or double vision,just like in the cartoons.
I’ve had problems swallowing, problems tasting, problems smelling.
Basically, anything involving the nerves can be a problem with MS. And that covers just about anything.