Time to utter the traditional refrain, “I’m not very good at New Year’s Resolutions.” Change hurts my MS’d up brain after all.
But but but, if I want to continue living a fantabulous life, I need to make some changes to accommodate my progressive and progressing Multiple Sclerosis.
2022 was a toughie. Medical retirement from www.shift.ms hit me like a long, slow slap round the chops. Three or four months of a total loss of sense of self. A hint of despair. A soupçon of misdirected regret. Oodles of deep, deep sighs.
Silly really. I was staying stupidly busy with my family, my speaking engagements, my patient and disability advocacy, my writing, my nonsensing as an anti-fashion guru. Not to mention my daily negotiations with Multiple Sclerosis itself. Stay clean, dressed, sleep, rest, exercise.
Too busy? Possibly, probably. Time to reshuffle and prioritise.
Into the absolute top priorities:
– Exercise. I do some but not enough. Irregularly and randomly. Starting 2nd Jan! I have lost most of my remaining leg strength. I need to hold onto what’s left as long as possible. I might even be able to recover some upper body strength and range. One last season of Wheelchair Rugby?
– Stop boozing? One of the ‘delights’ of having a Suprapubic Catheter has been a couple of years of intense tequila and sparkly. Pour it in, pour it out. It’s been great fun. But enough is enough. It’s my wife’s 21st birthday again in Feb. A good occasion to say adieu to that particular hobby.
– Reading. My foggy brain and permanent exhaustion have made that close to impossible. But I love(d) it. Fact, fiction and fun. Whatever. I devoured it. Shall I set March to dust down the collection? Might work, may not. The distinct lack of cocktails since February should help.
– Try to fit in more 24-hour love-making with my aforementioned beautiful wife. Though I must secure the chandeliers better…
Steady as she goes
– Family. Dinners out, adventures, cuddles. I am blessed to have a wonderful wife, children, mummy and wider family. Even my in-laws are nice! I need to continue to carve out space for special moments. That goes for friends too!
– Adrenaline nonsensing. As my world closes in, I relish every opportunity still available. I feel like it’s the only time when I’m disability-free. There’s still stuff I haven’t yet done. Next up, aerobatics in a small plane thanks to a lovely charity called http://www.aerobility.com . I haven’t told them yet! In the Spring, skating with ‘Wheels and Wheelchairs’ in London. Plenty more in the pipeline.
– Fashion nonsensing. Sorry Mrs W. I do it for fun. But I also do it to make an unsubtle point. What are you staring at? Me mid-life crisising in ridiculous, uncoordinated outfits? Fill your boots! Me in a wheelchair? Sod off!
– Campaigning, advocating, supporting all things MS, disability and diversity. I grew up a healthy, white privileged male. Oblivious to hardship and differences. I still have lots of making up to do.
– Public speaking. ‘Cos I love it. And if I say so myself because I’m good at it. (I cost a few quid though!).
– Writing. My annual promise to kickstart writing my book. 😬.
Dropping down the list
– Social media. I just had a wonderful few days off over the Christmas period and I’m aware hours can go past without me achieving much. I won’t disappear as I have a wonderful set of virtual friends and mutual supporters. Less Twitter. LinkedIn stays steady as my grift there leads to most of my speaking opportunities.
– In bededness. (Says he, typing from bed waiting for carers to haul him up). I know my future in an unpredictable health sense. But if I want to fulfill all of the above, I need to stretch the hours I’m up and about. I hope more exercise and zero boozing will help in a virtuous circle kinda way.
– Less freebies. I’ll continue to support http://www.reflecttheagency.com. And http://www.shift.ms . And https://www.parallellifestyle.com/ . And http://www.TEDxKingston.com . And https://www.prca.org.uk/ . And http://www.Chilternsms.org . That’s enough! I vow to probably not take on any more.
– (And finally, as an outside bet, I plan to start researching the anti-aging process. With small beginnings. Initially attempting to redirect neverending ear hair onto the top of my head. Without the earwax, obviously).
To review next December!!
Thanks Mark, once your book is available: I know it will be, I’ll certainly buy a copy, ideally, I’d get your signature on it, but that may possibly be asking myself too much: Just Thankyou for sharing your obvious writing talent with othe MSers: my own diagnosis came in August 1988, long time ago nor…. of course, and as I explained to my older son a few months ago, sorry Max, MS doesn’t get. better, you just live with the condition , as long as you can, fortunately I live in Foxfields, ( Upton, Northamptonshire) and have 3 carers every day.
I think my sons father only sees MS as a horrible condition, and we never discussed anything about it , my faiult as much as his,…..:(, thanks Mark, take care
Thanks Mark, when your book is available ( I knew it will be) I shall certainly buy a copy.
I used to use a catheter, unfortunately it became dislodged on more than one occasion, next step, I use a ‘ nappy’: that’s what. It is, I told my older son, completing his MA (politics) at Bristol Uni…., smart young man ❤️!!, I’m May 1997, I gave birth to him😘
Thanks Liz, two comments for the price of one!
Yes, bloody continence gear. Another advantage of the Suprapubic Catheter: back to boxers! Hurrah. I was so leaky that not even heavy duty nappies were sufficient…
Book book book. A big push for this year and next…