‘Hypochondria? It’s the only disease I haven’t met yet.’ One of the easier jokes I can actually remember as I simply
don’t do can’t remember long ones.
MS? Awkward, puzzling, easier said than done, and the type of illness that carries this tagline, “The illness is mine, but the tragedy theirs,” when asked how your family feels about your condition. Buzzwords that don’t exactly calm down an overactive mind.
Any illness is unwelcome, that much we can agree on. MS can strike in so many different ways that your life often resembles a war zone. When I entered the MS academy, I read the small print and knew it wouldn’t be a 365-day holiday. But, if one good thing has come from being diagnosed ten years ago, it’s the perception that no matter what happens, life goes on.
And boy does it go on.
With 51 symptoms associated with MS, it doesn’t seem like it is nitpicking when one or two happen at any given time or for any given reason. In the past, superbugs and near-blood-clots found their way into my system. How? My army of doctors can tell you all about it. Outcome? It takes a strong mind not to give in to doomsday scenarios every day.
As sobering as this post sounds, I tolerate MS. There’s no resentment or blame, no more heartache, guilt or doubt. I find solace in seeing science produce more and better research results and medication. Clinical trials are moving forward at a pace that will eventually lead to an easier life with an illness that is as fickle as MS.
PwMS (People with MS) often talk about a cure each time new research results are published. Timeframes can be testing and lengthy as it can take up to a decade between research and clinical news becoming public knowledge, and the eventual market release of new products. Even then your local government might step in and hold you or the medication for ransom. I admit that I try hard not to be overly excited when I see headlines linking the word ‘cure’ to ‘MS’. Being of the optimistic kind, though, I find it hard resetting my positive thinking back to ‘Relax, it’ll take another decade’ mode.
For my family and friends, I want to see a cure for MS within my lifetime, to ease their minds more than mine. There are currently 2.5 million people living with MS worldwide. That’s a hell of a big band of brothers and sisters, united because of a dodgy central nervous system.
For me? It would mean an end to excruciating trigeminal neuralgia and disabling fatigue. No more being unable to write because of painful eyes. No more listening to the TV instead of watching it. Cancelling event after event.
Like every other person living with a serious, progressive illness that affects every cell of your body, I want to see it removed. Until then, I wait. I wait patiently or impatiently. I hope. We hope that day will come soon. And when it happens, I want to be there.
Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological/MS services in Ireland. By highlighting difficult issues that come with such a diagnosis, she hopes her tenacity can bring some dignity to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.
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