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...
17 July 2023
July is Disability Pride month. For the record, if you hadn’t already figured out, I’m disabled. And very very proud to be so. 83% of disabled people aren’t born so. For the majority of us then, it’s a convoluted journey to accept our disability. Some never get there. It’s a further scramble to learn to be proud of our disability. Society and attitudes aren’t particularly helpful there. On July 2nd I attended https://www.parallellifestyle.com/windsor2023…(in Windsor Great Park). As an ambassador. As a participant and fundraiser. And hugger of lots of other disabled and non-disabled people. It was a fabulous celebration of disability and inclusion. Disabled and non-disabled people *together*. Enjoying company, achievements, celebrating, laughing. Hi-Fiving. Almost as if we’re normal. Which […]
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 […]