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...

 
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 […]
31 December 2020

Fundraise Bloody Fundraise!

Oops. My improbable plan was to offer up an alternative Queen’s Speech for Christmas Day. But clever friends (or Santa, depending on your age as you read this), bought me a bottle of Salted Caramel Tequila. They know the way to my heart and to my taste buds. First two shots, 9.30am. ‘Writing’ quickly burbled its way to foggy impossibility. “Cog fog!” (Cognitive Dysfunction), shout MSers. “Sozzled,” admits I…     Instead I shall emulate all our glorious political and religious leaders and issue a New Year’s Message. That’ll show ‘em. ‘Fundraise, Bloody Fundraise!’ is my 2021 nag. If you are of a certain age or you like your 80’s music, you’ll get the rhyming plagiarism in the title from […]
9 December 2020

I still shoot from the hip. But now I wee from the ankle. Bladder news.

Every so often – and somewhat inevitably with what is a progressive disease – something comes along to knock you backwards and sideways and to the floor. I spend most of my Multiple Sclerosis life comfortably in an ‘acceptance’ phase. I laugh, I love, I have silly adventures. I eat cake. I hang around my wife like a puppy, hoping against hope for a sloppy kiss. Mwah! But right now I’m back to ‘floundering‘. Is that an official grief stage? Well that’s where I am in any case, and I’m feeling a little beaten up. I am now a rather bemused operator of a ‘suprapubic catheter’. I’ll tell you a story to see if that cheers me up. This fable […]
27 October 2020

“You’re so inspiring!”

There are plenty of despairing ‘Things not to say to a disabled person’ lists if you google them. A couple of lead contenders appearing on the majority of these: – ‘You look so well!’ Actually, we know we don’t by ‘normal’ standards, but I have some sympathy with this. It is meant in good faith, and to me at least as a Brit, not unlike talking about the weather. Might rain later. – ‘Yeah, I know how you feel’. ‘Yeah, I get tired too’. These ones are tough to respond to. No, you don’t. You may, at times get the briefest of glimpses and insights into snippets of our life. But you are likely to see light at the end […]