Tuesday, 4 October 2016

Happy Anniversary! 25 Years With MS.

This blog is about our community in Orton Waterville. However, today's a special date for me so I hope you're happy for me to talk a little bit about why.

On 4th October 1991, my life changed irreversibly when I was told that I have the progressive, chronic neurological condition multiple sclerosis (MS). What I'm about to say about that may sound odd, so please bear with me.

MS is not a cause for celebration. While not life-limiting it has the capacity to wreck lives. Or as we 'MSers' like to say, MS isn't a death sentence, it's a life sentence. However, my own particular diagnosis remains one of the best things that has happened to me. I don't say this out of denial, nor because I think there's good in every situation or that everything happens for a reason. I say it very simply because the months leading up to my diagnosis were terrifying as I knew something was wrong but had no idea what it was. Finding out what it was was an intense relief.

I was only 19 when the symptoms started, though on reflection I can now trace them back even further than this. When my GP confirmed what I had suspected the overwhelming emotion that came over me that dark October day was relief. Not fear. Not sadness. Relief. Speak to anyone else with MS and they may very well say the same.

MS is still a very difficult condition to diagnose. There is no single, definitive test for it, and back in 1990 MRI machines were in short supply so people like me had to rely on medical opinion and a few other tests that were a lot more invasive than an MRI, such as vision evoked potentials and the dreaded lumbar puncture. In fact, I'd have to wait another five years for an MRI (which confirmed the original diagnosis of MS).

So why the relief? It's two-fold, really. As I've already said, the relief of finally getting an explanation for troubling symptoms cannot be over-stated. Living with unexplained and increasingly strange symptoms (such as double vision and going cross-eyed for six weeks) can be immensely stressful. Although there is still no 'cure' for MS, when you know that MS is what you're dealing with you can start to find out about it and learn about the range of treatments that tackle symptoms and make life easier.

But the main reason for my relief - and the reason why I feel that getting that diagnosis was one of the best things that has happened in my life - was that I was liberated from the chains of worrying about what could be wrong and free to embark upon the rest of my life.

I'm not going to describe MS here as you have Google at your fingertips but I'm always happy to talk about how it has affected me. It does limit me in some ways but has it held me back? Not really. This is important: I can only say 'not really' because of the fantastic support I have received, from friends, family, employers, the MS Society and others who have accepted that 'it is what it is' and enabled me to achieve the things I've been able to achieve in my life. There have been some sacrifices, such as driving (because I don't always trust my vision), but people have always been kind about offering me lifts and I use public transport or walk the rest of the time. Do I feel I've missed out? Am I less independent? No, not really. I've been able to work around it pretty well thus far.

In 1995, I established one of the world's first online communities of people with MS. It's called Jooly's Joint and has over 60,000 members world wide. Through this, I've been able to help many thousands of people with MS get their head around it and have a better transition into life with MS than many of us had before the WWW and social media were invented. While obviously pleased and proud to do this, Jooly's Joint has also been of huge support to me over the years and I'm very pleased that having MS has enabled me to help other people in the same situation.

I have no regret about having MS. I made the decision many years ago that I would not wake up every morning either regretting my life or wishing I was someone else. I'm very happy to be a person with MS, even on the more difficult days. MS has given me insight into life with disability and a far greater sensitivity to the things disabled people struggle with that I might have otherwise. I am grateful for that. It's a very personal thing, but for me that's how it is.

So happy SILVER anniversary to my MS. I have to say, when I was 20 and I wondered what my life would be like at 45 I did not imagine I'd be the co-leader of Peterborough Green Party. How wonderful and surprising life is. Here's to the next 25 years.


Jooly's Joint 8th birthday cake
8th Birthday Cake


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