Within my own personal social media echo-chamber, I follow a number of MS-related pages and blogs: some of the main charities, but also a few interesting individuals too (hi Steve!). At their best, they are an excellent way to keep up to speed with the latest news and developments, but they're also a good way of getting some basic, nuts-and-bolts factual information about multiple sclerosis. Of course, as with any other form of social media, you have to wade through huge amounts of memes and other unsubstantiated nonsense from the great unwashed to get to the good stuff. If you haven't got a finely tuned bullshit filter up and running by now, then you should probably just stay well away from the internet for your own safety. Still, if you do have the patience and a modicum of critical appreciation, then you can pretty quickly find the nuggets of gold of helpful information and a support network of organisations and individuals ready and willing to offer you support. If you know what you're looking for, then you really don't have to go through this alone. This is one of the things that the MS Trust is fantastic at... providing unbiased information and support to people with MS or going through the process of diagnosis.
There is an awful lot of old toss out there, though. My own personal bugbear are the pity parties, the people who use these forums as a way of wallowing in their own world of personal pain. There's one guy on the MS Trust pages who posts a different "no one understands my suffering so don't judge what you don't understand" memes every single day. Every. Single. Day. He must have a folder on his desktop where he saves them down when he finds them from his google alerts so he can quickly publish them every morning. I suppose he's looking for validation and a bit of human engagement, and he gets it in spades. Every post is re-shared and filled with comments from people saying "so true, so true". Look. I get it, I really do. MS is one of those conditions where people can get isolated and where increasing levels of disability must make the temptation to mourn what you've lost impossible to resist. It's also easy for me to judge when I'm able to run marathons.
But that's the thing, isn't it? I can run marathons, but that doesn't mean that I haven't suffered as a result of my multiple sclerosis. I ran before my symptoms and diagnosis, but I had only done one or two half marathons. I had no idea that running was going to form such a central pillar to my life, nor that my body was going to be robust enough to stand finishing 6 marathons (to date), including one that dipped under the 4 hour mark. These things seemed impossible to me before my diagnosis, but that diagnosis somehow gave me a strength and determination to try these things and not just to lie down and be beaten. I'd like to think that, even if I couldn't run marathons, or if something happens that means I can no longer run that far, then I'll find something else to focus on instead.
Starting with parkrun, I've discovered a joy in volunteering. Now, as well as happily volunteering most Saturdays, I also give up my time to coach as Couch to 5k programme at my running club, and when the first batch graduated, I started coaching an Improvers group too. I've got enormous satisfaction from watching these guys go from C25k to pulling on their club vests and racing 10km races for their club. My point is that something made these guys get up off the couch and to start running. If they're anything like me, they have a little voice in their head that is constantly questioning what the hell they think they're doing running around a track with all these excellent runners; that they don't belong and that they look ridiculous. Like me, they've faced that fear and done it anyway, and now there's no stopping them. It would have been a lot easier to stay on the sofa and say that they couldn't possibly ever do these things, but instead they've taken the harder path and faced down their fears.
MS is similar, at least in my experience. Sure, not everyone is going to be able to run, but there's always going to be something else you can do to stop yourself wallowing in your own suffering. Or, even worse, projecting that suffering at other people.
The other day, someone on the MS Trust Facebook page published a link to a story on the BBC website about someone with MS who completed an Ironman triathlon.
Conor Devine - the Ironman with MS
Here's the comment she put up to accompany the link:
"This is fab for him, but makes me angry. I am just going to sit here and try really really hard to overcome optical neuritis or trigeminal neuralgia for all of us. I am so pleased he can do this, but I (we) can not go out and improve our mobility more than we can. This implies to the world that we could be well if only we tried. Pleased for all of you who can do any degree of activity to keep you fit, some can’t. If it had just said that"
Someone else felt the need to add, 'Great now the dwp will think we can all do this'
Now, the BBC could definitely have done a better job in that piece of making it clear that MS has a variety of possible outcomes, and that completing an Ironman probably puts you at one extreme end of the scale.... but I find it so difficult to stomach the wilful tunnel vision displayed by this kind of attitude, an apparent inability to share in someone else's successes and a determination to wallow in their own limitations. I once received a comment (here or elsewhere) from someone else with MS saying something along the lines of "There's always someone like you, climbing a mountain or running a marathon when I can't even run for the bus". Why can't we just revel in these successes? Where's your generosity of spirit? Someone else's success doesn't reflect on your own failures, does it? Why try to limit your expectations to a world of what you can't do and not think upwards towards what you might be able to achieve instead?
It's a cliche, but you really don't know what you might be able to achieve until you try. Sure, you might not be climbing a mountain or running a marathon, but who knows what you might be able to achieve instead?
I'm doing my training with Guide Dogs tomorrow, so I'm about to embark on another chapter in my volunteering. It would be a lot easier to do nothing and to stay at home instead, worrying about the progression of my MS and how no-one understands my invisible pain, but I'm trying to do something useful with my life instead.
I'm not dead yet.
meeting with my neurologist
3 days ago