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...

 
30 March 2021
Brain atrophy but Mars Attacks!

My Multiple Sclerosis’d brain is shrinking!

One of the technical terms I use to describe MS damage to the central nervous system in my brain and spinal cord is ‘icky’. That covers everything off pretty well. My own sodding immune system is wading into the protective sheath around my nerves and leaving permanent scarring, hardening and damage. Not strategically or predictably. Totally randomly. My immune system ‘bomb runs’ show up on MRI scans like small blobs of cotton wool or some well-chomped, discarded chewing gum. Icky. Classics lesson for you: ‘Sclerosis’ comes from the Greek σκληρός sklērós, “hard”. (ie ‘hardening’, ‘scars’, ‘ewww’) Doubly icky is the knowledge that my actual brain is shrinking. ‘Brain atrophy’ is, I think, the proper term. Happens to us all as […]
19 March 2021

Me and the President of the United States. And Multiple Sclerosis.

Once upon a time, in an era so far away it should be in black and white, I took no interest in US politics… Presidents would only waft across my consciousness when starting wars or teaching me the word ‘impeach’ by making a mess of a dress and an intern’s life… (younger readers: Google ‘Clinton’, ‘Lewinsky’, ‘I did not have sexual relations with that woman’. And please behave when you rule the world.) Then came a breath of fresh air and a brief, delicious taste of diversity in power with Barrack Obama. I got interested and started to vaguely pay attention.   I was even more excited when former fighter pilot President Whitmore played a key role in defeating a […]
21 February 2021

I’m not a freak show!

Look. I know I’m ‘different’. Isn’t everybody? I’m sure not many people aspire to be disabled, even though, over the years – I have come to be proud to be so. Prouder and happier still to have ‘achieved’ membership of an amazingly resilient and supportive community.  Not biased at all, but  https://shift.ms  is my fave place to hang, of course. I shout out for multiple sclerosis peeps, for everyone disabled, and have even spread my wobbly wings to talking up all things diversity. Neither am I a shrinking violet about it. As far as wheelchairs can be sexy, I have a funky, eye-catching  https://trekinetic.com/  one. It’s racing red and can do about four miles an hour. I like to think of it […]
22 January 2021

Making Grand Plans When Multiple Sclerosis Has Other Ideas

Back in the Noughties, I spent a happy three years or so working for the ‘leading premium health and fitness group’, or something like that. Fluffy marketing and pr-speak for David Lloyd Leisure. Thoroughly recommend: https://www.davidlloyd.co.uk/  . It was very much a lifestyle job. If you had a morning meeting, you could bet your bottom dollar – and indeed any excess fat on your bottom – that you would run into other attendees prior to that meeting on a treadmill, or in the pool. Or dosing up on a Full English Breakfast as a reward for all the worthy calorie-crunching. If the meeting was in the afternoon, the same exercise logic applied. But replace ‘Full English’ with ‘Pint of Beer […]