The gift that keeps on giving
Andy was diagnosed with relapsing remitting MS in 2006 and deals with MS by writing and sharing his perspective. He talks here about the challenges of muscle spasms and a bladder that doesn’t empty properly.
MS really is the gift that keeps on giving. The problem is it’s a terrible gift which makes you immediately think, ‘Who can I regift this to?’ Only you wouldn’t want to regift it to anyone.
It’s a mysterious beast with a whole unpleasant smorgasbord of symptoms. What blights one MSer’s life might never touch another’s. And symptoms are forever subject to change.
Mobility issues are generally visible to the outside world, at least for periods of time. But it can often be the hidden ones that we struggle with the most.
The thought that no one knows about our deep struggles somehow makes them worse to deal with. Even those closest to us often find it difficult to understand. How can you, if you’ve not had to deal with it yourself?
Problems emptying my bladder
For years my hidden symptom was my bladder not emptying like it should, known as ‘bladder retention’. It was annoying and sometimes depressing that I couldn’t walk as far or play sport anymore, but having every toilet visit turn into a battle between brain and bladder made MS feel like a war. And it was a war I was losing, because it felt like no one knew what I was going through.
I fought back partly by writing about it. I told it like it was, telling every non-MS-er to savour their visits to the bathroom to pee. I knew they did it without realising how easy it was for them, how natural.
For some of us, we dreaded our toilet visits. For me it was because it was such a struggle to release my bladder’s cargo. For others, they dreaded not making it to the toilet in time.
But that was then. My memoir ‘Balls to MS’ covers the first twenty years of having MS, from the very first hint of a symptom. For much of that time period, bladder retention was the primary hidden symptom beneath the more obvious layer of mobility issues. But a new one was beginning to emerge by the end of the book.
Muscle spasms
It’s only in passing that muscle spasms are mentioned. This symptom had taken the best part of twenty years to show itself but we’re certainly well-acquainted now. Legs twitching and pulsing has risen rapidly to the top of the charts as my number one most annoying symptom. They drive me mad, particularly as they are apt to strike when I’m either trying to relax in front of the TV or even more frustratingly, when I’m trying to sleep.
The disruption to my sleep is a gamechanger, only it’s not a game I want to play. Less sleep means all my symptoms heighten. I can’t walk as far the next day. I can concentrate less. And in an ironic twist, it makes my spasms worse. Yes, if I’m tired, my legs are more likely to twitch when I’m trying to drop off, so my sleep is disrupted again and the whole sorry merry-go-round continues to turn.
Tackling the spasms
Perhaps due to insomnia, I’ve tried so many ways to overcome this. So many in fact, that I may have forgotten one or two from this list:
- The drugs baclofen and pregabalin
- Exfoliating brush
- TENS machine
- Vaping with cannabis oil
- Calcium, magnesium, zinc tablets
- Epsom salts
- Magnesium butter
- Replacing white sugar with unrefined
They’ve all had varying success. Some have come and gone, after initial shows of promise. Maybe I simply benefitted from the placebo effect. Others, like baclofen, are a firm fixture in my life. What feels like the Holy Grail is Sativex. I’ve heard so many good things about its benefits from other patients but as yet, my NHS trust is still to ratify its use.
And so I wait. And hope that one day I’ll find a way to overcome this symptom, this latecomer to my MS party. Because I’ve largely managed to overcome bladder retention. That’s another irony – I started to get on top of it, just as spasms entered the scene.
Overcoming the bladder problems
How did I get on top of the bladder issues? By sitting down. Without my brain having to put any effort into keeping me upright, it seems to have more room to send signals to my bladder telling it to release its load. Just catch up with whatever on my phone and let nature take its course. It’s a little emasculating but considering the alternative, it’s worth it.
That’s the thing about us MS folk. It may take a while but whatever is thrown at us, we’ll find a way.
Read more about Andy’s story on his blog, where you can also find out where to buy his memoir 'Balls to MS'.
Andy Reynard
Andy is a writer and blogger who's been living with relapsing remitting MS since 2002.
Andy is the author of ‘Balls to MS: 20 Years of Discovering Your Body Hates You’. He deals with MS through disease modifying injections, humour, moaning and writing about his experiences on the MS frontline.
