I’ve read somewhere that 50% of people with Multiple Sclerosis will be diagnosed with clinical depression at some point. And I know that – statistically – we live seven years less than Joe Average, with one of the chief killers identified as suicide.
A part of that misery cycle would be down to the anxiety and unpredictability of this sodding disease. The constant nagging fear of what is around the corner.
Some of it might be down to our more exhausting symptoms getting us down: notably nerve pain and chronic fatigue I imagine.
And some of it might be a symptom in itself. After all, our disease is neurological. Our thinking processes and even our character can be affected over time. If MS itself decides we can be depressed, it’s gonna be tough to ‘unspiral’.
Moi? I’ve been lucky. I think I was born that way. As my disease has progressed I’ve dipped in and out of counselling. I’ve found that useful, but more ‘housekeeping’ than any dire need.
I don’t think I’ve ever been depressed, though I’ve had good reason to be at times. I love my life, I love my wife and children. I love the friends that have stuck by me. I love the adventures I can still have. Long may that last.
But boy, my medical retirement has hit me harder than any symptom or disease progression ever has.
The timing was my choice. I was only working very part time for https://www.shift.ms as their Head of Comms, but being in PR, I was always ‘on’, however officially part-time the role was. And I urgently needed to have a fully accessible bathroom installed. I needed my tax-free pension pot to build it. (It’s lovely!)
Strangely, happily though, I’ve stayed super busy. More public speaking than ever, more patient advocacy with pharmaceuticals and disability service providers. An exercise video with Gok Wan. And I was again rated one of the most influential disabled people in the U.K.. Can’t complain. Mustn’t complain!
So why did I find it so hard?
1. I think somewhere along the line it’s that loss of belonging. I’ve always been a corporate dude at heart. Mostly huge brand names and always lovely roles. And all of a sudden I’m wondering what I’m up to next week. I’m fishing for brain food and stimulation. I usually find something in spades.
2. The guilt. I’ve put in a good innings of hard graft, and lasted far longer at grown-up work than I might have. But just as I feel stupidly helpless about having MS in the first place through no fault of my own, a part of me feels I have let my wife down. It’s not constant and it doesn’t make any sense. But it’s a forever nag swirling somewhere round my foggy brain.
In the end though, whilst it is certainly a painful milestone, about four months in I’m mostly at peace with it. The timing was good, my showers are safe. I have so much on my brain hurts. I spend more time with our children. I’m up to date with Taskmaster and other nonsensing on telly. And next year, finally, finally, I should have my first draft of my book. Current title, ‘The Rise and the Many Falls of Me’…
All is good!
Mark – you are so lucky to have such a positive outlook. Work, fame and fortune will surely come your way in bucketloads. You deserve all of it!