Me and MS – keeping score

I told everyone about my diagnosis right away. Many people with MS describe a process of slowly informing people. But for me, having the well-meaning but horrible sympathetic conversations with friends and family quickly was important. I am incredibly fortunate that my work situation allowed me to tell people there with no fear that it could impact my career.

In truth, these conversations were essential to me accepting my condition. It took about 35 seconds before my closest friends were asking when I could get a blue badge, which is what I needed. To feel normal and to not feel that people were treading carefully around me. Yes, I have MS now but I’m still me, so take the piss for Christ’s sake, there’s loads of good jokes you can do now that you couldn’t before!

Changing my habits and starting MS treatment

As the weeks turned into months I met my medical team and started a drug called Tysabri. I have to take this monthly, and learnt that my nurse Anna is a soft touch when it comes to biscuits. If you ask her you get loads, whereas my other nurses only give you one packet, because they care about ‘budgets’ or some old nonsense.

I also started changing habits to live well, exercising and eating a better diet became important (with the exception of the second Thursday of every month when I demolish 16 hospital issue custard creams because if a nurse gives it to you, it’s basically a prescription, don’t Google it.)

As I got used to my new medication, apart from a few side effects of feeling fairly exhausted in the immediate aftermath of them, I found I was responding well to them. No new lesions appeared on an MRI I had done in August, meaning my disease hasn’t progressed, much like my career in 2020.

Keeping score

I began to keep score of how often my MS beats me on a day, and how often I knock it back and win. Sometimes it’s a really small victory, like spending an hour cooking a lush dinner. Other times it's a big victory - I ran a half marathon for the first time in my life and that was certainly a big victory (but still only 1 point to me, you can’t game the system!)

By the time I’d had the condition for about 8 months I was starting to appreciate some positives that had come from it. I was fitter than I ever had been, as when you worry you could lose mobility one day, you don’t take it for granted.

15 months on from my MS diagnosis

It’s now 15 months since I got my diagnosis. I sometimes am still scared, and sad that I’ve drawn this hand. I worry that I won’t be active forever. Perhaps I may lose cognitive function, or my legs might start misbehaving.

There will invariably be bad days ahead, days where my condition feels like it owns me. But I won’t let that happen for long. I have promised myself that I’ll always bounce back with a smile and a joke about what’s going on.

The score is currently Robin: 4, MS: 0, and whilst its a long way to go till full time, I’ll keep playing so that I come away from this particular game the winner.

This is an edited version of a blog Robin published last year. Follow Robin on Twitter.