I was is in work the other day and in amongst a conversation about the previous night’s ‘Game of Thrones’ and the price of jacket potatoes, the attention suddenly switched to me.
‘Oi! What’s up with your face? You having a heart attack or something?’ (builder humour).
It was a hot day. My face was burning and bright red, so I yet again explained MS heat intolerance, one of my first and most annoying symptoms, trying to put a jokey slant to it.
‘Oh yeah, that old MS excuse again. Don’t you ever not talk about MS?’ Now, this may seem brutal, but bear in mind this is a building site, they’re all friends and I can give as good as I get. So I did, and cut him down to size.
A while later, more unsettled than I wanted to let on, I casually asked if it’s true, do I always talk about MS?
‘Um, kind of.’
I found a shady corner, sat and sulked for a long time (admittedly, not very grown up) and brooded. It was bugging me. I always prided myself on putting MS to one side and getting on with the job. Apart from when I can’t, and I stay at home, the beauty of a flexible job. I thought I had a ‘work mask’. I’d calibrated my working day so that I started early, finished early and spent the rest of the day recovering before starting again. To most people, I should appear perfectly fine.
Finally, it was time to go and I continued sulking in the van. Then I thought about it on a different level. They were perhaps right, but it just showed how much MS dominated my life. I try to keep it in a box, or at least a separate part of myself. I’ve tried to come to terms with the totality of it, but maybe it hadn’t really sunk in.
I ran through work scenarios:
- Unable to work in the sun – MS heat intolerance.
- Being tired all the time – MS fatigue.
- Tripping over at work – MS foot drop.
- Garbled speech – a hark-back to one of my first symptoms.
- Brain freeze – MS cog fog.
Yep, it was all about MS. To me though, it’s all normal now. So it’s not so much that I talk about MS all the time, it’s when people ask me why I did this or did that, the answer almost always wends its way back to MS.
Maybe they could focus instead on how much I have moved the company forward, which has nothing to do with MS; my superb organisational skills, my rapport with clients, my eye for detail and my all-round fabulousness?
What do you think?