if I surround myself with positive things...

It was World MS Day on Saturday.

I woke up at about 03:30 to find my whole lower body in spasm. from the muscles of my lower stomach down through my legs to my feet. I've been getting cramps in my legs for some time, but this is different, it's not a sudden clenching of the muscles but something that lasts for longer. It's not as intensely painful, but it is uncomfortable and has a halo effect that lingers in the muscles for some hours afterwards, as a deep-set stiffness in the muscles.

As I often do when this happens, I got up and walked very stiffly to the bathroom. This is partly to ease the muscles off, but also I'm now pretty entrenched in the habit of emptying my unreliable bladder when it is convenient. I catheterise myself every night before bed to ensure I sleep with a completely empty bladder and take a drug every day to help resist bladder urge, but as I was awake it was a way to kill two birds with one stone. It was already pretty light outside and the dawn chorus was really starting to get underway. It was really quite a lovely.

That done, I staggered back to the bedroom to try to get some more sleep, popping an ibuprofen along the way in the hopes of waking up with a bit less muscle pain.

This is my new routine.

We already know that the problems with my bladder are related to my MS: my brain isn't able to reliably empty my bladder completely, and I will often get the urge to pee even if I've only just been, whether my bladder is empty or not. It's likely that the muscle spasms in my lower body are MS-related too. There are drugs you can take to chemically relax these muscles and to try and get a good night's sleep, but I'm reluctant to take them. 

After all, I'm a runner.

Running keeps me sane. This was true before the lockdown, and it's doubly true now. My ability to get out of the house and clear my head on a run is precious to me. I'm probably getting slower as I get older, but the speed I run is not nearly as important to me as my ability to run at all. As things stand, I don't want to compromise the ability of my legs to carry me and so, if the spasms are the price I need to pay if I want to keep running... well, then it's a cost I'm prepared to pay.

Mind you, I have been doing quite a lot of running recently: I covered 145 miles in May, almost all of it side-by-side with my wife, who hasn't run as far in a month, even when she was training for her marathons. Quite a lot of this mileage has been slow, on stiff legs. Where the speed of my wife used to be our limiting factor, these days, it's more likely that she's waiting for me. It's not that I can't run fast any more - I'm doing at least one set of intervals a week where I try to let the brakes off - it's just that I'm really just happy to be moving at all; delighted just to get out of the house in this beautiful weather and to enjoy the fresh air and the flourishing spring around us.

On Saturday, after another couple of hours of sleep, I got up and went out for a 5km run. It wasn't fast and it wasn't pretty, but I like to think that it helped to stretch some of that stiffness out of my legs. Maybe, maybe not. Either way, it definitely made me feel better.

I was diagnosed with MS in 2009 after 4 years of symptoms. It's an incurable condition with uncertain outcomes, so it's a frightening thing to be labelled with. Maybe I'm one of the lucky ones, but I do firmly believe that MS only has as much control of your life as you allow it.

As this film from World MS day a few years ago shows beautifully, a diagnosis with multiple sclerosis does not have to mean the end. Life is what you make of it, and other cliches.



I think I'm much stronger and kinder now than I was in 2009, and I thank MS for that.

keep on keeping on...

It's World MS Day today.  They're asking people to tell their stories using the hashtag #strongerthanMS.

Well, rather than tell you a story... how about I just share a picture instead?

...a thousand words and all that.

I know I say this all the time, but if you allow your MS to define you, then you're already beaten.

As I always do on World MS Day, I'll also leave you with this video... because it never fails to make me go a bit misty-eyed because it hits so close to home for me.



You don't have to run a marathon to not be beaten by MS, mind.... chacun à son goût.

you're not beaten yet.....

One morning in the summer of 2005, I woke up with a numb hand.

In 2009, I received the definitive diagnosis that I had multiple sclerosis.

Last month, I ran the London Marathon.  That's quite a journey over that decade.

Multiple sclerosis is a horrible, insidious condition for which there is currently no cure and which affects everyone differently.  I can tell you from my own experience that the process of being diagnosed with MS is no fun at all and can often drag out for years... four years in my case.  During that time, you can't help but play over and over in your head what your outcome might be.  Am I going to end up in a wheelchair? Is this going to shorten my life?  You wouldn't be human if thoughts like that didn't occasionally creep into your mind, and the Internet can be a very scary place indeed to look up things like MS because people tend to write about the worst outcomes.  When it came, the diagnosis was actually something of a relief.  Once this thing had a name, I felt better able to get on with sticking two fingers up at it and getting on with living my life.  Frankly, what other choice do you have?

It's World MS Day today, and their slogan this year is #strongerthanMS.

I've been lucky and I'm bloody-minded and stubborn enough to push myself to run a marathon.  Not everyone with MS is this lucky, and I only need to look around the waiting room at the MS clinic I attend to understand that.  Every single person there represents a possible future for me and nobody is more aware of that than me.  Look, I know I always sound excessively stoical when I talk about this, but you can only work with the cards you've been dealt.  There might come a time when I can't run a marathon; or can't cycle to work; or perhaps can't even walk to the shops.  If that time comes, I'm just going to have to set myself different targets.

The one thing that I hope I never forget is that MS will only define me if I let it.

I'm not dead yet.

---

I always link to this: it's a film they made for World MS Day in 2009. If you haven't seen it, I'd really encourage you to give up a few minutes of your time to watch it through. It strikes very close to home for me and almost always brings a tear to my eye.



You're not alone and you're stronger than this.

--

“I wish it need not have happened in my time," said Frodo.
"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

If you want to have a pity party, that's up to you. Just count me out.

still breathing...

-> World MS Day
-> MS Society
-> MS Trust
-> Shift MS