It can take a long time to become comfortable with a diagnosis like MS. I’m not totally sure I’m all the way there yet. But since I found out I had it in 2013, I’ve been coming to terms with what MS means for my life.
I’m currently writing a theatre show called 'MS is My Boyfriend’, which I hope will unravel some of the secrecy that seems to surround MS in the public eye.
Despite the fact that over 100,000 people in the UK live with the condition, there’s often a lack of awareness about it: how it affects a person, what adjustments they might have to make, what it means for the future.
It’s time to set the record straight. Even if it means exploring the most embarrassing and untalked-about symptoms that the general public may not be aware of.
A tense relationship
MS is my boyfriend for a number of reasons, and it’s not always easy. We bicker like there’s no tomorrow.
When I get mad, I tell MS to leave, but it never listens. And when MS gets mad, it sends shooting pains, live like wires, down my legs and hands. The relationship can be tense. I know I should eat healthy, but who can avoid pizza?
Early nights are key, but I love staying up late watching trash TV. MS seems to control when I can and can’t sleep, like the worst snorer in the world, impossible to tune out. Some days I start to feel hopeless.
Committed to MS
But it’s not all bad. Sometimes, MS introduces me to people I haven’t met before, and gives me opportunities I wouldn’t have otherwise had.
MS explains why I am the way I am and helps me understand myself better. It also knows my limits, and when we work together, we can find a happy medium.
The sex is great but it took some getting there. I know there are bound to be changes ahead, because MS is unpredictable, but I’ve made a commitment. I’m in it for the long haul, and I’m ready to work on any challenge that comes up.
It’s a clumsy analogy, but it works for me right now. MS is my boyfriend – what is it to you?
Amy Mackelden is currently developing a theatre show called 'MS Is My Boyfriend'. You can find out more about it at msismyboyfriend.com.