A good life (honestly!) with Multiple Sclerosis…
I work (for now), I love, I live, I have fun. Just with wheelchairs and drugs and spasms and stuff...
27 March 2023
I think I have written about this before, but I have been utterly overwhelmed by fatigue these last ten days. Work, campaigning and social media had to be jettisoned. I think and I hope I’m emerging, but in any case in a brief clearing of the fog, I’ll put finger to tablet. The Spoon Theory was written by Christine Miserando in an attempt to explain chronic (ie forever, relentless) fatigue and disability over just being knackered. She has another auto-immune disease called Lupus. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ In a crap summary of her eloquent analogy, we all have a certain number of spoons allocated per day to accomplish tasks from the trivial – getting dressed – to the bonkers – running a marathon. […]
11 January 2023
We, the Multiple Sclerosis, disabled and wider D&I community do love complex words and explanations. ‘Intersectionality’. ‘Diversity, Equity and Inclusion’. ‘Disease Modifying Therapy’. ‘Toxic Positivity’. I’m gonna tackle the last one today. There’s a phrase used by lots of MSers (that’s people with Multiple Sclerosis). ‘MS Warrior’. I’m absolutely fine about people identifying with that, but I just don’t see myself there. I’ve done everything right in handling my MS. Straight onto a treatment as soon as it was offered. Exercise. Good sleep(ish!). Staying active professionally and socially. Decent diet with the odd naughty cake. Vats of water. Possibly too much Tequila. 😬 And yet I’m pretty ill with my MS. I have daily carers. I struggle to make a […]
1 January 2023
Time to utter the traditional refrain, “I’m not very good at New Year’s Resolutions.” Change hurts my MS’d up brain after all. But but but, if I want to continue living a fantabulous life, I need to make some changes to accommodate my progressive and progressing Multiple Sclerosis. 2022 was a toughie. Medical retirement from www.shift.ms hit me like a long, slow slap round the chops. Three or four months of a total loss of sense of self. A hint of despair. A soupçon of misdirected regret. Oodles of deep, deep sighs. Silly really. I was staying stupidly busy with my family, my speaking engagements, my patient and disability advocacy, my writing, my nonsensing as an anti-fashion guru. Not to […]
10 December 2022
Nope, not because of the sparkly glitz, not because of the hype, not because we’re in the umpteenth series. Let me tell you a story. Once upon a time I wasn’t disabled. 30 years ago and counting. Once upon a time I wasn’t married. 23 years and counting. Don’t tell Mrs W, but I had other girlfriends last century. Shhh… Even further back in time, I took time out before university to travel. Time in Czechoslovakia. Ski bumming (French Alps). Holiday and ski repping (French and Swiss Alps, Canary Islands).. Needless to say, I had a bloody amazing, snogtastic time. And when I finally arrived at Uni (Manchester apparently), I had two things on my mind. Girls and booze. […]