“This isn’t just a degenerative condition of the central nervous system. This is M&S.” Imagine that in Dervla Kirwin’s voice, if you will. It’s now a month since my GP gave me the sucker punching news that I have Multiple Sclerosis, at the ripe old age of 28.
This all began in early May, when I awoke one morning in my bed in Toronto (where I’d lived for the previous year), feeling like I’d slept on my right hand. I could move my fingers, but had feck all sensation in them. Over the next few weeks it didn’t abate, making note-taking in work a total bitch. Having frankly rubbish health insurance, and lacking the unicorn blood seemingly required to procure a health card from the Ontario authorities, I did my best to forget about it until I returned to the Motherland at the end of June.
A friend who trained as an Occupational Therapist had suggested it might be a trapped nerve, so off to the Physio Lauren did trot. After various pokings and proddings, she referred me back to my own doctor, who referred me for an MRI (it’s hard not to get a complex when nobody wants to keep you). A mere two days later, I was called to come into my GP’s surgery for my results- it didn’t occur to me that they really only bring you back in that urgently when something’s very wrong.
My GP is a lovely, straight-shooting woman and I’ve never seen her even slightly ruffled. She looked genuinely heartbroken when she told me my scan showed something called demyelination in some nerves in my spine. This refers to scars (or lesions) caused when your immune system attacks the myelin sheath- the casings on your nerves- which leads to nerve damage. As MS is already in my family (my late Granny and an aunt on the same side), I knew where she was going with this before the words “Multiple Sclerosis” even left her mouth. I won’t pretend I took it like a champ and cracked jokes- of course I didn’t. I barely even remember those 20 minutes (which both felt like 30 seconds and hours). I did, thankfully, have the presence of mind to ask if these scars could be caused by anything- anything– else. I was told in such a way that only doctors can that it was extremely unlikely.
I have no memory at all of the five minute walk home from the doctor’s to my house. I do, however, remember that calls I had to make to both of my parents- without a doubt the worst calls I’ve ever had to make. I called a select few close friends to tell them the news- once the initial “WTF??” passed, there were offers of lifts, tea, cake and all the emotional support you could shake a stick at. I rang my boss to let her know I wasn’t going to be in for the rest of the week, and why. Not that I’d expect any less from the people around me , but these folks truly rallied. I don’t think I would have coped as well without that support from all corners.
What followed was a whirlwind of hospitals and bloodwork and neurological exams and waiting. Six hours of waiting in A&E at The Mater, as that was the quickest way to get me into the system. Another MRI for my brain, as the original scan had concentrated on my neck and spine- where we all thought the “jammed nerve” was kicking up. As someone with a long-held macabre curiosity, I couldn’t resist the urge to have a look at the disc of images that I got as a weird-ass souvenir. Other than the “Oooh I do have a brain- take THAT 2nd class teacher!” reaction, I could clearly see at least one site of inflammation. When I went back to my neurologist last week, I was told that there were many more scars than anticipated. This was something that has (mostly) been under the radar for several years. Once I started thinking back, there had been a handful of minor “episodes”, half remembered, over two-three years. That time my left eye went dodgy and tricky to see out of, which abated after a few weeks. That time I came down with a flu-like virus and lost sensation in my lower right leg, which abated after a few weeks. All massive red flags, with big feckin’ bells on, now I know what I do.
So now we’re back to the waiting game- for my Longterm Illness paperwork to come through so I can start medication. This will take the form of a simple daily tablet, which will first require getting hooked up to a heart monitor for six hours. You know, to make sure it doesn’t inadvertently kill me or something. But then? Then it’s business as usual. Life as usual. It’ll just be one of those things that I happen to have- like my asthma, or my morbid fear of having my ears touched. I’ll be watchful for relapses, but with any luck (clearly something I have in spades!) they will be few and far between. It could be years between episodes; five years in human time may as well be a decade in medical science, so perhaps there’ll even be a cure by my next relapse.
In the meantime, I’ll be using this as my excuse for my life-long clumsiness and “dropper” tendencies. And as a good friend of mine recently told me, “It won’t be grand. But it will be ok.”
[Image: Rakka , Author’s]