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

 
27 November 2022
A badly dressed white man stands tall and proud against the background of Scottish moorland.

RIP Doddie Weir – A life to aspire to…

Golly, Doddie’s passing has hit me hard. To be clear, he had a different, rarer illness to me. Motor Neurone Disease, or ALS. It’s the one we all threw ice buckets over ourselves for a few years ago. It’s never a competition between illnesses, but MND is one of the few that are definitely worse than MS. It’s usually (very) life-limiting and it’s incredibly cruel. I never met Doddie, but I feel like a kindred spirit has passed. Not least because of his ridiculous clothing sense. He knew the power of personal branding to enhance his story. Now, there are other methods than nonsensing with your clothes. But it works for me and it worked in spades for him.   […]
12 November 2022
A green field with woodland in the background. I’m in the middle: a wheelchair use with a red top on, facing away from the camera

Slowly getting my head round early retirement…

I’ve read somewhere that 50% of people with Multiple Sclerosis will be diagnosed with clinical depression at some point. And I know that – statistically – we live seven years less than Joe Average, with one of the chief killers identified as suicide. A part of that misery cycle would be down to the anxiety and unpredictability of this sodding disease. The constant nagging fear of what is around the corner. Some of it might be down to our more exhausting symptoms getting us down: notably nerve pain and chronic fatigue I imagine. And some of it might be a symptom in itself. After all, our disease is neurological. Our thinking processes and even our character can be affected over […]
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., […]
6 September 2022
In a bedroom setting, two of my fave carers - both female - are masked and uniformed up. They are faking a mean / arms crossed pose.

Accepting Change with a Progressive Disease

Multiple Sclerosis in a downward, unpredictable spiral isn’t pretty. But then neither am I. And I guess I just have to live with both those facts. Hey ho. MS isn’t always progressive. But it often is. It doesn’t always progress fast. But it sometimes does. There’s very little you can do to predict your ongoing progress. No wonder that feeds into the anxiety that frequently comes hand in hand with actual symptoms. And right now I’m in the middle of a storm of change. Meh… Some posts inbound!   Daily carer visits My latest significant ickiness to ‘give in’ to? Daily carer visits. Weekdays to put me to bed. Weekends to both haul me out of bed and then later […]