Sodding Multiple Sclerosis and Sodding Covid. My mental health in quiet isolation.

The Forgotten Minority
9 November 2021
A selection of five photos in a montage. All showing either my sister - a beautiful brunette - from babydom to her 40s - or that same sister plus me also brown haired and white, also from teeny to 40s ish. We’re always happy, we are always clearly loving each other
Dealing with grief in the saddest of times
5 March 2022
A man in red short-sleeved shirt and dodgy patchwork trousers is sitting outside in his wheelchair. He's in a lovely garden setting (mature trees in the background). He's clearly pretending to work (laptop, headphones) as he has a cheeky smile and a glass of booze

Working from home and surviving a Pandemic, yesterday

Ironically, whilst trying to write for months about mental health, I have been struggling with a mental block in putting pen to paper. Or finger to keyboard. Actually it’s been so long it should be quill to parchment. So long that the word ‘blog’ probably wasn’t invented and I should call this ‘ye olde chronicle update’. Awkward.

I have faintly covered up my failures with virtual speaking engagements and a shiny series of new podcasts, https://www.prca.org.uk/Disability-at-the-Table . Available on all your favourite gramophones now, with a thrilling new episode out soon. So I can blame my workload on a good few distractions and my fave new invented phrase, ‘other nonsensing’. I’ve stayed tastily busy. Not to mention on telly a lot courtesy of this ad: https://www.youtube.com/watch?v=LW3ZBUZ1RUE . I proudly play ‘tastelessly dressed nerf gun dad’.

Talking of ‘forever and a half’, it’s been that long since the Pandemic began that I’ve started talking in terms of life ‘B.C.’: ‘Before Covid’. My Covid era to date has been kinda ok. That’s certainly not to gloat, but to share some of the ways I’ve coped. And perhaps to say having a chronic illness may even have helped a little, even if it hasn’t been an easy ride.

 

The downsides of Multiple Sclerosis in the Covid era. (Other vulnerable conditions are available).

Well we all started in roughly the same boat, didn’t we? Watching on in fascinated horror as a dodgy new something from a city we’d never heard of, quickly spread like a zombie plague worldwide. Most of us felt the rising surge of concern, confusion and even fascination. Few of us imagined that nearly two years down the line, we’d still be talking about Covid more than the weather. Or that phrases like ‘Lateral Flow Test’, ‘Omnicron’, ‘Intubation’ and ‘Djokovic is an arrogant tosser’ would be in our everyday vocabulary.

But while Joe Average contemplated pending lockdowns and started saying things like ‘just the flu’, people in vulnerable categories watched news just that bit more avidly. We needed to understand just how bad it might be for us. Friends or friends of friends in our community suffered early… ‘Only the vulnerable die’ isn’t the most pleasant place to be when you’re ummm, vulnerable.

I think I caught Covid early on, leading to a miserable few days. But no hospitalisation, no testing, no loss of taste. So who knows? Maybe I literally caught ‘just the flu’?

A man lies sprawled in the shade. He is lying across a sofa, asleep. He is wearing pyjamas, with his T-shirt riding up to reveal a less than glamorous belly. He has a dodgy Mohican haircut.

A bloke with the flu. Or man flu. Or Covid, yesterday.
Whatever, he looks gorgeous. Not sure about his belly, or the hedgehog on his head.

 

Government data didn’t help. Daily updates confirmed ‘x00’ dead. ‘But [don’t worry], x00 of those had underlying health conditions’. Yay for those without underlying conditions, it was clearly meant to reassure. It’s just that it terrified a large subset of the population. And weaponised those who wanted to carry on as normal. ‘Just lock the vulnerable up so we can go down the pub and lick beer mats and each other as normal!’ ‘They were gonna die anyway’. Marginalised by our condition in normal B.C. life, we got an unwelcome ‘slightly more exclusion’ upgrade.

And whilst I could maintain a certain level of exercise at home I missed an awful lot of physio, as well my beloved Wheelchair Rugby. My progressive disease has peskily progressed, largely unchecked. Bugger. And bugger some more.

 

The upsides

  • There was a thoughtful, upbeat post in the depths of Covid time on the Shift.ms forum, “We’ve got this”, listing oodles of reasons we were well placed to cope with the pandemic. https://shift.ms/@Clare80/we-ve-got-this–wp1539415 . Well worth a read, but in short, people with MS are well-versed in anxiety, limbo, resilience, isolation, dissecting complex jargon. And humour. Yup, we certainly had a few coping mechanisms ready-cooked, though it hasn’t been easy.
  • The concept we’ve been crying out for, ‘Work From Home’ became a viable, acceptable thing. The technology had been there for a while. It’s just that too many companies and bosses were hard-wired to the good old days. Five days and a bowler hat in the office = good. Working from home (‘WFH’) = shoddy laziness, probably just doing the ironing or watching Squid Games. Bah! It’s a shame it took a bloomin’ pandemic for WFH, hybrid working, flexible working to become a thing. Sorry, that was a side-whinge.
  • Well I can only talk personally on WFH income – mine went up, hurrah! I think I can very comfortably call myself a professional speaker now. I just have to hope my voice and my thinking processes can stay stable-ish for a while, and that the market for Zoom chats outlasts the pandemic.
  • I got to spend extra time with my lovely family. Both our children were in phases of their life where being at home wasn’t such a bad thing. And who’s gonna complain about being stuck at home with a beautiful wife? Mrs W is a high flyer, always has been. The pandemic stopped her jetting off to places to do important stuff. And her attempts to have an affair with Ryan Reynolds stalled. Handy.

 

My Coping Mechanisms

Among the many topics I found myself discussing, mental health – with my total lack of expertise – was something of a surprise. Me, professionally or unprofessionally blustering my way through a topic? Never!

But hey, I appear to have coped with these last months relatively well. To move from ‘total nonsensing’ into the realm of vague credibility, I actually did some research. Yes, really. To my surprise and fall-off-my-wheelchair delight, I found I appeared to be doing most things right. Through luck rather than good judgement.

  • Counselling: early on into my MS diagnosis and in the depths of grief and shock at  the news, I jumped at the chance of some professional counselling. I’ve dipped in and out ever since, though I haven’t felt the need to visit for a while. I’d advocate for anyone going through tough times to consider this, but for the purposes of this thrilling blog pretending to convey some wisdom, I wanted to talk about a great skill I learned and which I regularly use. I ask a question of myself in the third person. ‘Are you ok at the mo? No, really, are you ok? Are you sure about that?’ If the answer is a definite yes, then great. But if not, I can reflect on what to do. A holiday? A break from social media? Call my mum? Talk to my GP? Buy another tasteless shirt? Get outdoors? Talk to some close friends? Dinner with Mrs W? An afternoon of wild tantric sex? Sadly that last dream option ain’t gonna happen. Hey ho. But only the briefest of proper, honest conversations with myself can tell me when I need some self-love and some escapism.
  • Connect. We’re social animals aren’t we, by and large? That missed element has been a massive drag on wellbeing for so many. Virtual pub quizzes and wistful waves to loved ones at 2 metres’ distance helped a little, but it’s not up there with a long hug, a rowdy night or a belly-laugh chat with a dear friend. At the time of writing, I’m crossing fingers and anything else possible that we’re approaching some form of normality. In the meantime, I’ve focused on maintaining contact as well as current restrictions allow. And talking on the phone or virtually to those dear to me.
  • Be Active. Another toughie in lockdown, but not impossible. Deprived of Wheelchair Rugby, I still imposed daily exercise on myself. Outdoors when possible. But even indoors, shuffling a few yards, joining a seated exercise video, pumping weights in bed. Or more tantric sex.
  • Take Notice. Enjoying the small things and noticing the pleasant bits ‘n bobs we take for granted. Today I spotted a robin in the garden. I noticed a rose was attempting to blossom. Weirdly I enjoyed seeing a plane fly over. It means to me that some people, somewhere are back travelling. And I heard the toot toot of the steam train at Whipsnade Zoo, about two miles away as the crow flies. If we’re really lucky we get to hear the lions roar, the chimpanzees chitter and the elephants trumpeting. That’s always a little bizarre when you live in Bedfordshire. Wonderful though!
  • Give. Always better than receiving. I’m blessed that in this stage of my life I am working – paid sometimes, sometimes just because I can – to raise awareness of multiple sclerosis and a fab charity, Shift.ms; to talk about the wider disabled community; to shout about diversity. I won’t be a millionaire following this path – if it’s accessible to wheelchairs 😉 – but bloody hell it’s rewarding. ‘Giving’ doesn’t mean we all need to become rabid campaigners and activists like me. It can be the simple things. Like flowers. Like a surprise cuppa. Like a helping hand. Like unexpected tantric sex. Whatever!
  • Keep Learning. This is the one I need to work on. Fair enough I continue to learn about MS, about disability, about all the compexities of diversity. But wider than that and outside my ‘purpose’, I’m not learning enough. Counter-intuitively, I haven’t read nearly as much as I used to B.C. There you go, that’s my New Blog Resolution. Get back to reading.

 

 

4 Comments

  1. You put into words exactly how I’ve been feeling! There have definitely been some upsides to covid for me (the option not to feel guilty about not bothering to get dressed, or see people I don’t want to, mainly). Pleased it has helped you do all your fab MS awareness stuff 🙂

    • One Man and his Catheters says:

      Thanks Jen. Yep, I have been thinking so much of this for so long. It needed to be written Eventually!

  2. Ruaan says:

    Hi Mark,

    Same sentiments here, definitely took the foot off the gas of the physical activity and it is catching up. Though as you say WFH was blessing as the office has embraced a very distributed workforce now with all the tech coming to the fore. Keep well…

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