shake it off....

One of the drawbacks of injecting immune-suppressors every week is that they suppress your immune system. I never used to get colds at all, but since I began injecting these disease modifying drugs (designed to slow down the progression of my multiple sclerosis) they seem to hit me harder every year.

The sniffles I can manage, but I now seem to usually get a secondary infection in my lungs that lasts for ages as my body lacks the tools to fight it off - it took months to finally shake it off last year. The current infection is about 3-4 weeks in and has completely stopped me running (well, apart from two predictably difficult half marathons and a couple of parkruns that I stubbornly insisted on running).

I've had one course of antibiotics already and just started the next one; I'm using a brown inhaler twice a day and I'm supposed to be using a blue one 4 times a day; I'm also now having a chest x-ray. Good times. The doctor today saw me chafing at the bit to get out running (I've got two half marathons, two 20 mile races and a marathon in the diary to train for, you know!) and warned me to be nice to myself.

Hmm.

That's the hard part.

They say you should never run if a cold descends into your chest, but I'd be interested to hear the views of the people who say this on running when you can't feel your feet and have widespread numbness throughout the muscles of your thighs; or when you've lost 15% of the muscle mass on your left side and a good deal of the flexibility in one ankle.

Let's be honest: if I listened to my body, I'd probably never run at all.

Not that I'm planning on going out for a run.

Before Saturday, anyway.

*** I feel I should say that this post isn't supposed to be a pity party. I sometimes get accused of being overly rosy about MS and presenting a view that applies to very few people. I can, after all, run a marathon. I suppose this means I feel a bit of responsibility to show the other side too. MS can be an invisible condition, and for every time I'm shown as #inspiration, smiling as I finish a marathon or something, I feel I need to be honest about the rest of it too. I know that I'm still relatively very lucky with my MS. I'm not really looking for sympathy because the only thing this infection is stopping me doing is running, and I'm still doing a bit of that. It's frustrating, especially after my 4 week layoff in September, but it's hardly the end of the world.

Incidentally, I also know that my loss of sensation and muscle are nothing at all like running with a chest infection.  I'm just blowing off steam.  Probably best to ignore me, really.

latch on to the affirmative....

As you might imagine, I've connected with the MS Trust on Facebook.  It seemed a natural thing to do, given that they're an excellent charity and we fundraise for them.  I was thinking that maybe I'd get some updates on the charity's latest work and other news about the various research and breakthroughs that are happening in the world of MS.  I get all of that, but what I wasn't really ready for was the community.

Facebook is many things - not least of which is that it is an appalling time sucker - but one of the things that it is best at is bringing communities of people together.  Whether it's a loose grouping of friends who are scattered around the country and around the world, or whether it's your local parkrun or whatever.... it provides a simple, accessible way to be in contact with lots of like-minded people. To give an example, I really enjoy being a member of the Virtual Runner UK group.  Although formed mainly as a platform for people to discuss the Virtual Runs they've entered - something that I don't really do all that often and only started because it's a local company and have supported the charities of several of my friends, including my own - but it's grown into something much more than that.  In the main, the people drawn to virtual runs are the kind of people who are just getting into running and want to earn medals but are intimidated by the idea of entering an actual race. What the community has grown into is a hugely supportive group of people who are encouraging other people as they take their first steps into a healthier lifestyle.  I think it's brilliant.

In theory, the MS Trust community is something similar: a group of people who have a shared experience and are able to offer each other support and perhaps to share the benefit of their own experiences.  I know from experience that being diagnosed with MS can be a long and frightening process, and it can be very reassuring to talk to other people who have been through the same thing and can tell you that life still goes on.

....except that the problem with this particular community is that, if you believe what you read posted here, it seems like life doesn't go on and that, if it does, it really isn't worth living.  Here's a recent post: "I don't think I want a driverless car. Most of my body seems to be driverless and unresponsive now so the only time I can shift is with my right foot on the Go pedal in the car. I don't want to be deprived of that ability to control moving about as well".  Is it me, or has she really had to reach for the negative there?

I've talked on here before about how there's an unfortunate tendency for blogs on MS to turn into pity parties.  Whilst I understand that what people choose to write about isn't necessarily their whole experience and that it can be therapeutic to just let it all out as a form of primal scream therapy... frankly, I don't have much patience for it.  What good does it do you to wallow?  In the final analysis, what's important is what you have, not what you've lost, isn't it? None of us have any control over this illness and mourning a life you can no longer lead just seems to me like a massive waste of the time you have left.  I don't mind people talking about their own experiences, but it drives me crazy when it all degenerates into a kind of "oh, poor me" or a "nobody knows the troubles I've seen" competition. Let's be clear: in that competition there are only losers.

I realise that I'm wide open to people dismissing my opinion on this as irrelevant: it's easy for me to have that attitude when I'm still able to run marathons, isn't it?  ("There's always someone like you who can run marathons or climb mountains.  I can't even get out of my front door", as someone once sneered at me).  There's clearly an element of truth in that, but you have a choice, don't you?  You can choose to be positive and to try and live your life with what you've got, or you can choose to be negative and to wallow in the injustice of what you've lost.  When I read the "29 things that only people with MS will understand", I genuinely don't understand why everyone else is commenting things like "So true, so true", when all I can wonder is why these people are defining themselves with these labels.  I like to think that, if things were ever to get worse for me, that I'd cut my cloth according to my circumstances and try to make the best of it.

Hopefully, I'll never have to find out.

...but the MS Trust group is awash with negativity.  Even when people are asking relatively benign questions and posting links ("What do you think of this?" and so on), the comments are often miserable and small-minded.  Someone actually posted the other day asking for people to try and be positive and to share something nice that had happened in their lives, and all he got in return was people telling him they couldn't because nothing nice had happened in their lives.  Really?  Oh come on.  It then degenerated into people slagging off the people who did post nice things.

If you ever see me commenting "So true" underneath a meme like any of these, please find me and slap me.  Even if any of these things are part of your experience, they're not true all of the time, are they?  This last one?  I fall over when I run, but I pick myself back up and I keep on running.

Isn't that how any of us should try and live our lives?

As the song says:

You've got to spread joy up to the maximum
Bring gloom, down to the minimum
Otherwise pandemonium
Liable to walk upon the scene

can I get an amen?

we can to move on up...

I'm worried about my legs.

It's not usually my policy to moan about my health here, but I'm concerned that the recent problems I've been having with my legs might be something that I'm just going to have to learn to live with. This is my ability to run we're talking about here, people.  CODE RED!

I've whinged about this already (here, here and here), so I'll try not to go on about it too much.  The thing is.... I feel like I've been lucky with my MS so far.  Sure, I've got some challenges... but in spite of all that, I've been able to keep up with my running.  More than that: since I was diagnosed in 2009, I've joined a running club and actually massively increased my mileage.  Not only have I made lots of friends doing this, but although it might sound ridiculous, I don't think I would even have thought of running a marathon before my diagnosis, never mind running two and raising £22,000 for the MS Trust.  

MS has taken some things from me, but I honestly think that it has made me a better, kinder person; it's also revealed my stubborn, determined side.  I'm less angry at the world now than I used to be, but I'm also merciless with myself and refuse to make any excuses for not getting out for a run, no matter how I'm feeling and no matter what the weather might be doing.

Much of my sense of self is bound up in my running.  I might have an incurable neurological condition, but as long as I've been able to run, I've been able to feel like I have some control.  No one needs to tell me what MS could do to me... trust me: I know.  I'll cross that bridge when I come to it.  There's no point worrying about things you can't control.

...or so I thought.

Now, suddenly my legs feel stiff and weird and I'm worried about falling over when I run.  How quickly things change.  Look on my works ye mighty and despair!  I've scuffed the foot on my weaker left side for a few years now, and falling over when running isn't a new thing... but I don't even remember tripping when I went down the other day; I was just upright one moment and then on the floor the next.  I don't like the fact that I can't explain what happened as a simple trip.  It's knocked my confidence and the fact that I just don't feel steady on my legs every time I run really isn't helping. As I was sitting wearing shorts as my scabs dried the other night, I noticed that my thighs are now visibly different in size.  I measured them: my left quad is now 5cm smaller around than my right.  It's noticeably weaker too.  This isn't a surprise to me, but it is visible proof of the damage that MS is doing to my body.

Am I going to stop running?  No, of course I'm not.

Am I worried about what's happening to me?  Yes.  I am.  I'm worried that I'm just going to get slower and slower and that one of the things that is most important to me will slowly be taken away from me.  I'd also be lying if I didn't tell you that I'm finding it a little frustrating that many of my friends are getting faster - through their own hard work and talent, I have to say - and I just seem to be running through treacle and getting slower.

But.... but... but.... why the self-pity?  Am I not still running?  What right do I have to be moaning?

I ran a little over 4 miles tonight at a shade over 8.33 minutes per mile.  My legs felt wobbly and pretty rubbish throughout, but that's a perfectly acceptable pace and was much faster than I'd assumed I was moving.  This comes on top of six miles on Sunday and 3 miles on Saturday.  That's more than thirteen miles in the last three days.  And a couple of weeks ago I completed a half marathon.

Maybe I should be focusing on what I can do rather than what I can't.

I didn't used to be this stoical either, you know.  That's another thing I probably owe to MS.