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...
27 November 2022
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
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
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
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 […]