I'm very conscious that, when I write about my multiple sclerosis, I probably come across as excessively stoical. I think it's true that I do downplay my own symptoms a bit, but I only do so because I am aware of how lucky I really am. Perhaps that sounds odd, but I like to think about the things that I can do rather than the things that I cannot. The Guardian posted an article about MS a little while ago, and I commented underneath saying something about how a diagnosis with MS wasn't the end and that you really do still have your whole life in front of you. I was speaking from personal experience, and I'd just completed a marathon. This defied my own expectations of what I thought might be possible, never mind anybody else's. Of course, that comment quickly had a reply from someone:
"I appreciate what you are trying to say but after 5 months at home unable to walk more than 400 metres at a time on the flat in front of our home she has been able to go to the market . There are the highs and the lows . Sometimes the " Hey You could be running a marathon just like me. I have the same illness" has a very negative impact on the perceptions of those with and without the illness."
I understand where this person is coming from, but it just seems like such a negative view of the world that focuses on the things you can't do. Alright, so maybe a marathon is out of reach for lots of people - goodness knows that it's out of the reach of lots of people who don't have MS - but what about focusing on something that you might be able to achieve instead? Why wallow in those negative feelings?
Of course, the obvious reply is that it's easy for me to be positive when I'm well enough and fit enough to be able to run a marathon....
I mention this because my diary is currently filling up with various medical appointments with an assortment of specialists, mostly -- but not all -- related to my MS. I'm trying to keep a positive attitude, but sometimes it can be difficult when it feels as if everything is beginning to malfunction, one piece at a time.
The latest is an issue I've been having with my eyes. For lots of people, it's problems with their eyesight that first lead to a diagnosis of multiple sclerosis. Again, I've been fairly lucky with this so far, but I have had a problem for a number of years where, under some circumstances, the pupil in my right eye doesn't respond properly to changing light conditions. Usually, it gets stuck shut up tightly, as though I was in bright sunlight, and this means I have blurry vision for a bit until it finally starts to work again a few minutes later. Just recently, I've been waking up every day with both pupils like that, and it takes a little while for them to adjust and for me to be able to see normally in the morning.
I'm hoping this is just a passing thing, but it's really hard not to think about how massively this could affect my life if it stays like this or gets any worse. Can you imagine your eyes having a fluctuating ability to focus properly? I try not to dwell on it, but it is a worry.
In addition, I've been finding running a lot harder. I can still run at a reasonable lick, but I'm lacking strength and I'm running a lot slower than I would normally expect to and I'm finding myself feeling much more fatigued afterwards. Maybe it's not that big a deal to be running 9 minute miles instead of 8 minute miles, but it matters to me and I've noticed the difference. It's true that I've had a cold that's hung around for weeks that could be affecting my energy levels, but I also seem to be losing weight still, and I wouldn't be human if my mind didn't occasionally wonder "what if...."?
It's the Robin Hood marathon and half marathon this Sunday. I was entered into the half, but as I'm at Twickenham for the England v Wales game in the World Cup, I'm not going to be able to run.... and I'm actually really glad about that. Some of my friends will be running their first marathons on Sunday, and as I face into the prospect of running another marathon at London next year, the idea of all that training is suddenly both daunting and a little bit frightening. I've done it all before, of course... but what if it's different this time?
Ah, but it's pointless to worry about these things, right? There's nothing I can do to change anything that might (or might not) be coming my way so what else can you do but sit back and try and enjoy the ride?
Yes, but that's an easy thing to say and a much harder thing to believe 100% of the time. Even if you believe it 99% of the time, then there are going to be moments when it all feels a little overwhelming.
song for a future generation
2 days ago