Oct 25, 2021
‘Celebrating’ 11 years of Multiple Sclerosis (MS)
Like the rebellious pre-teen it is
I’ve been thinking all week that 25th October was a key date of some type but couldn’t for the life of me think what. Is it a birthday? An anniversary? A day I had committed to something but not put in the diary?
Well, at 8 pm it has finally struck me.
Today marks 11 years since I was diagnosed with MS…then two weeks later I was told I also have degenerative disc disease.
I used to really feel this day quite strongly, but the fact that I had forgotten is a good sign.
It shows I’m doing well.
I’m managing the condition.
I’ve managed to lift or at least reduce many symptoms.
I have found a way of working that complements and helps my health.
It was only yesterday that I was talking about how it is around 7 years since I had a relapse. Being a relapsing-remitting type of MSer this is a damn good sign. After a flurry of relapses in the initial 4 years, it settled down. And though I then developed daily symptoms instead, they are less severe (I’m not going blind or getting double vision for weeks at a time!)
I know I’m lucky. Though we can’t say I’m ‘cured’ (no such cure exists for MS though there are really positive signs — check out Selma Blair’s latest news), I’ve learned to live with the challenges it brings. I’ve learned to manage my symptoms. I have a great medical team around me — my MS nurses are a godsend, and my new(ish) neurologist whom I gained when we moved is lovely. And he takes action, rather than “we’ll see in 6 months”. This is a huge change from my previous hospital where I was passed round and round by the neurologists and the nurse was my only saviour but it was really hard to get in to see her. I actually had to sit in the corridor of their ward, create a scene and refuse to move to get the one test I needed… which eventually led to my diagnosis.
The truth of it is that being diagnosed with MS has also made me make some big changes and take on some challenges that I wouldn’t have done otherwise. For a start, within hours of being diagnosed, I signed up for Nightrider — a 100km bike ride through London at midnight to raise money for the MS Society.
I left a relationship and found one where I’m much happier.
I changed my career (admittedly it took another change then to find my fit, but it was a step forward).
It’s even been a big reason for writing the book.
Sure, there have been godawful times and I would rather not have the damn thing, but you have to find the positives and deal with it with humour. Something I now feel more able to do.
Having gone solo and being able to work from home has undoubtedly been a catalyst for managing my conditions better. It’s given me the flexibility I need: to be able to go to appointments when I want, to find the balance I need for fatigue, insomnia and pain, to be able to lie on the floor to work when my back goes, and to be able to get away from the over-stimulation of open-plan offices which exhausted me.
So it might seem odd to say I’m celebrating having MS (and I’m certainly not at a point where I can say that about my spine and DDD), but I am.
I am celebrating all that it has given me, rather than anything it took away. I’m celebrating the things it’s made me do. I’m celebrating the changes it brought in life, even if they took their goddamn time.
Here’s to year twelve. Let’s see what it brings.
