Chronic Illness

 

I work (for now), I love, I live, I have fun. Just with wheelchairs and drugs and spasms and stuff...

 
14 October 2022
The sails of the tallship 'Tenacious' unfurled at night. Lit only by moonlight against the sea.

Briefly Escaping a Progressive Illness

So I know I’m lucky. I have a wonderful family and close friends. I made it to 53 before medical retirement and after an amazing career. I keep getting wonderful representation and speaking opportunities out of the blue. So, despite Kate Winslet *still* not having picked up the telephone, all in all I’m having a stonking time. But having an overwhelmingly shitty disease pretty shittily is shitty nonetheless. I’m proud to be disabled, proud of how I handle it. I just need a break from it every so often. Adrenaline JunkieOutside family and friendship fun, my general approach to escaping Multiple Sclerosis is to pursue ‘heavy nonsensing’. The scarier the better. Adrenaline rocks! With the help of organisations like Http://www.Sportability., […]
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 […]
30 June 2020

The Gazillion Stages of Grief. Covid, MS and Bloody Everything!

It’s tough out there right now. As I write this, and in the U.K. alone, perhaps 50,000 family and friends, (more or less 20,000, because we’re in both a guessing game and watching political football), are mourning a loved one. Gone to a virus none of us had heard of just a few distant months ago. In that same brief, surreal period, others have lost equally loved ones to something else. Accidents, scary illnesses, and old age? Well, they trample on, regardless of what makes the headlines. And very few of us dealing with the mounting waves of shock, bewilderment and fear have been allowed to manage the grief process. No proper funerals with cucumber sandwiches and sherry. No final, […]
18 April 2020
A man lies sprawled in the shade. He is lying across a sofa, asleep. He is wearing pyjamas, with his T-shirt riding up to reveal a less than glamorous belly. He has a dodgy Mohican haircut.

Covid-19 ain’t no flu. My Coronavirus and my Multiple Sclerosis

Yikes! Well that’s been a fun two weeks or so. Not. Lockdown all started out ok. The sun was out and I was set on getting just a bit fitter. This brief video of me exercising is not speeded up. At all. No sir-eee https://youtu.be/lKE6OAxR9HI Then, just as the U.K. was approaching peak cases and hospitals were heroically, desperately bursting at the seams, I developed the main symptoms of Covid-19. A constant, exhausting and painful dry cough. A fever. In my case, a sore throat and a touch of nausea too. And anxiety through the roof. A doctor call-back confirmed I probably had it, as did a dashed paramedic visit to our son, who also had Covid-19, but with an […]