Six years ago on Friday 25th May, it’ll be my six year MS-versary.
It feels like yesterday. I vividly remember parking up a whole hour early, my car facing the huge hospital before me.
For some bizarre reason, I tried out a new lip-gloss as I waited, a freebie from a magazine I was probably too old for, my nerves shredded.
After an hour, I locked the car and made my way to the clinic where I flicked through a battered Argos catalogue. I was called through and in less than ten minutes I was diagnosed with a highly-active form of MS and offered two different treatments.
I left, dazed, spaced-out, stumbling, a sign of things to come. I stuffed the leaflets into my bag, sat in the car and exhaled, catching sight of that awful lip-gloss in the mirror. It truly was dreadful, but at that point, I could’ve painted a clown face on and not worried about it.
No one wants to be diagnosed with MS, but after 10 months of endless relapses, I just needed an answer, and with that, access to vital treatment. In the interim, I was spinning around in a frightening world of anxiety and fear. My health was declining rapidly, I was confused and I was losing control of my life; partner left, sacked from work. Cat stuck by me.
In the car, I smiled. I would be treated. The medicine, no matter how brutal (and it was pretty harsh), would slow this all down. Give me some breathing space, allow me the energy to get The Teenager through High School, that he’d just started. The timing wasn’t great.
Six years on and three courses of Alemtuzumab treatment later – one more course than the usual two, thanks to a particularly active bunch of lesions – we’re still here and still doing well (or ‘calm‘, as The Teenager would say).
He’s wrapping up his first year at University and I’m doing … ok. Ish. It’s been an unimaginably steep learning curve, adapting to a life I’d imagined would be a couple of decades in the future. Slowing down, readjusting.
I sleep a lot and have the whole routine down to a tee – blanket, earplugs, zonk. I’m gone. I can quite literally say, I could sleep anywhere, anytime. And that’s before 8 hours at night.
I trip a lot. I fall over a lot. My hands are wonky and my feet don’t listen to me. And as for the nerve pain; that’s a whole different matter.
Six years on, I’m in a perpetual cycle of adapting, albeit on a downward path. Yet the more I go downwards, the more my mind struggles to stay afloat.
I push myself, then have a little nap.
I could count out my post-MS life in naps. But I would far rather count it out in successes. We’re still here, and we’re here for the long-term.
That was a powerful read – the months of waiting for a diagnosis must have been so tough. Keep counting the successes!
Thank you so much!
Those ten months were just awful, something I would never ever want to go through again. I think the thought of being stuck in that Limboland was almost more frightening than the thought of MS 🙁
But definitely, I’m going to keep counting the successes!
Happy MS versaty .. you’re doing great . I’m coming up on 6 years later this year … I know we have to dig deep some days but I pride myself on being quite good at that ☺️ Think you probs are too! I had a steroid injection into my plantar fascia today… talk about toe curling 😩… hopefully it does the trick tho. Hope you are enjoying the sunshine … looks like it’s gearing up to be a scorcher of a bank hol😎 my teenager still has a couple of weeks to go.. exam season 🤓!! Enough rambling for now🙊 x
You poor thing! That sounds terrible. I had an injection in my finger once and that was bad enough!
Weirdly (we’re like twins) I have plantar fasci-wotsit too. It’s incredibly painful, so really hope the injection works for you. I use those shoe inserts and they really help during the day. Yet another form of nerve pain we have to put up with!
I’m hiding from the sunshine as possible, but it still lifts the spirits. Mind you, am looking forward to the thunder and lightening at the weekend! Have a fab holiday and best of luck to your teen for their exams 🙂 X