As my MND has progressed I have less energy to do simple things. I try now to have days of rest where I stay in bed and recover, and today is one of those days. I didn't need days like this a couple of years ago, but that's the thing with MND, it will constantly throw new challenges at you.
I've always loved problem solving, I complete cryptic crosswords and "extreme killer" sudoku every day. Seriously who comes up with this tosh? Who has ever felt like their life was in danger from "killer" sudoku? Anyway, I love a puzzle... and MND throws plenty of them at you. Unlike Japanese number puzzles however, many of them are actually life threatening.
Whereas logic puzzles generate that lovely feeling of being a right smart arse when you complete them; the solutions to MND related problems are rarely so satisfying. They typically involve some pain, an increased reliance on others (feeling like a burden), loss of dignity, increased isolation, feeling one step closer to death, and an overall reduction in how much enjoyment it's possible to take from life.
Sounds awful reading that back. Knowing that has been my reality for the last five years. I can completely understand how this disease devastates patients and their families, which is why it needs to be changed. Through science. Through research. By us.
I just want to make clear that what I'm about to write is true for my MND experience, I know that everyones experience varies hugely. The last thing I want to do is come across as someone who has this magic recipe for coping with this brute of a disease, we're all different, as are our circumstances.
My approach to MND is based on two things, firstly the predictability of my progression and secondly, acceptance. For example: I knew that I would be unable to walk pretty shortly after I was diagnosed, so I got a wheelchair almost immediately after coming out of hospital even though I didn't need it day-to-day for a good six months. I've applied that logic to my whole journey.
Now let's not pretend here. It wasn't always as easy as I make it out to be.
In my youth I worked for my Dad as a carpet fitter, we also fitted people's blinds and curtains. So I know my way around a set of drapes (trust me, I am going somewhere with this).
About a week after my diagnosis I was recovering from pneumonia in a private room on a respiratory ward in Queens Medical Centre. As I was getting my room ready for bed I would get increasingly frustrated with the curtains... they were fitted to a sticky Swish rail, hooks were falling out, they hadn't been pulled up properly. Frankly, they were a disgrace... and I wasn't going to stand for it anymore.
So there is me, he who espouses acceptance and preparedness. I mean, I obviously trotted out to the nurses station and asked for some help didn't I? Of course not... This master of sudoku logically deduced that the best solution to this puzzle was to use a chair, climb up onto the window sill and sort the curtains himself... MND diagnosis be damned!
So I did! I climbed up and fixed them and everything was great!
Was it balls...
I tried to push myself up onto the chair, didn't have the strength in my leg, fell backwards and enjoyed some intimate minutes with the NHS linoleum. Unable to get up, I was found crying in a heap by an amazing nurse called Jenny. She sat me up and said something that has stayed with me ever since:
"You need to accept that you can't do what you used to do"
At the time I was in bits. My curtain fixing days were over... no more blackout linings and pinch pleats for you sunshine!
But it turned out that moment shaped my journey and helped me become who I am today.
Today I run my own Charity, complete marathons, have invested nearly a quarter of a million pounds in MND research, go to amazing gigs (Elbow were incredible), host charity guests at the football communicating with my eyes, make thank you speeches to fundraisers using the voice that I banked during lockdown, socialise with mates at parties and write and publish my own blog. I wonder what I'll get up to next month... I think there's still a few new tricks left in me yet.
Thanks Jenny x
If you feel inspired to help us fund more vital research, you can donate here.
Thank you so much for reading.
Sam x
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