Covid-19 ain’t no flu. My Coronavirus and my Multiple Sclerosis

I’m stockpiling too! Just on anxiety, not bog-roll and pasta…
23 March 2020
The Gazillion Stages of Grief. Covid, MS and Bloody Everything!
30 June 2020

Covid-19 recovery and looking sexy. A guide

Yikes! Well that’s been a fun two weeks or so. Not.

Lockdown all started out ok. The sun was out and I was set on getting just a bit fitter. This brief video of me exercising is not speeded up. At all. No sir-eee
https://youtu.be/lKE6OAxR9HI

Then, just as the U.K. was approaching peak cases and hospitals were heroically, desperately bursting at the seams, I developed the main symptoms of Covid-19. A constant, exhausting and painful dry cough. A fever. In my case, a sore throat and a touch of nausea too. And anxiety through the roof. A doctor call-back confirmed I probably had it, as did a dashed paramedic visit to our son, who also had Covid-19, but with an asthma attack into the mix for him. He’s a tough chap and a cool dude… Very proud of how he copes.

I am pretty stoic about getting sick – even over and above your run-of-the-mill being chronically ill. I am used to blue lights, A&E corridors and beds, acute wards, being prodded, poked. Pricked with needles and filled with lines. Watching doctors and nurses scratch their chins: often knowingly but sometimes bemused. And all the time developing a water-tight theory that the only breakfast toast available is deliberately served stone cold.

Courtesy of my ‘underlying condition’ – doesn’t feel very underlying to me(!) – and our older son’s asthma, we knew we needed to be extra careful. We were, and still are. We’re blessed with a cosy house and a large garden, surrounded by fields and woods on the Dunstable Downs. What with nice weather, our surroundings and my funky wheelchair to help us explore, ours was set to be a cuddlier, more chocolate-themed version of Castaway. Add to that Zoom, House Party, FaceTime and Skype and we were hardly going to be lonely!

A very hunky man in isolation, yesterday

We set about some household silliness, and all looked relatively rosy… Except for my new hairstyle as delivered by my children…

https://youtu.be/rLCWgrmAasA

Covid-19 hit the two of us on pretty much the same day. Him heavier on the cough at first, me heavier on the fever. Much of the script we’ve been hearing has been that most people get it mildly or even asymptotically. And at the other end of the spectrum, that the vulnerable and elderly were highly at risk… Well, we both got it medium-ish, and thankfully our son – reassuring ambulance visit aside – bounced back quickly.

As with any fever I contract, I was immobilised for about a week. All my symptoms and disabilities were exacerbated horribly. A transfer from bed to loo and back again would take 90 exhausting and exhausted minutes. No blokey newspaper-on-the-bog reading involved, just sheer effort and clumsy, shaky handling of catheters… And pulling on socks? Onto my feet I mean? 30 spasm-ing mins, easy.

I normally try to round out my blogs into a pretty, coherent verbal picture. My brain’s not there yet in recovery terms. Some random observations therefore of life in Covid-Land and almost post-Covid-Land:

 

😷 The number of phone chargers available are in direct inverse proportion to the number of children in a house. Like the mysterious disappearing biros of the last century, chargers appear to vanish just as quickly. I would suspect having two boys, that there is also a direct correlation between pants abandoned on bedroom floor, and chargers squirrelled away in said bedroom.

 

😷 Fatigue is frequently a big partner-in-crime of Multiple Sclerosis. Both as a direct symptom and as a result of the effort of getting through the day with all the other MS bits ‘n bobs. Covid-19 took me to a whole new uncharted level. And that’s saying something. Or slurring it. Still there a bit, a lot now… zzzz.

A sleepy looking man with a strange haircut and pyjamas, yesterday.

 

A handsome, classy man taking his first nap ever, yesterday

 

😷 It’s all very well being called vulnerable at every turn. But when most daily doom updates include the fact that a big x% who died had underlying conditions [‘so don’t panic too much you ‘normal’ people’], then it does keep anxiety levels sky high. I inserted the squared brackets, but that’s exactly how the messaging feels. Every day. As I lay there feeling sorry for myself and fearing hospitalisation, my mind whirred. If fuzzily. Living wills, life insurance, cold calculations as to whether I would be deemed worthy of ventilators…

 

😷 As a result, withdrawing from the world a little was wise. No social media – yes really! Less focus on the news updates telling me scary stuff. Sleep. Binge TV. (Disney+, bargain! Toy Story 4? Bit of a disappointment).

 

😷 I try to teach our children that ‘hate’ is a strong word. I’m sorry, but I bloody hate Donald Trump and all he stands for. That the stock market, power and re-election is more important to him than lives and suffering is just beyond my comprehension. That others aspire to that ‘wealth-at-all-costs’ kind of world view is a tragedy. Dangerously straying onto a comments section one day, I came across the words ‘when the weak and elderly are gone’. Sums it up for a dangerous minority of the population. For all the niceness and selflessness going on right now from so many others.

 

😷 Talking niceness, I’ve pointed out before that fair weather friends fade away when you are diagnosed with Multiple Sclerosis, and when you bound gleefully into a wheelchair. There’s been none of that this time round. Lots of outpouring of love and (two metre distant, electronic) empathy. I approve. More of this supportive community behaviour please.

 

😷 Reading Harry Potter to our youngest with a croaky, tired throat is a tough old magical nut to crack. I try to deliver so many accents and voices, but when your range is reduced to a spluttering zilch? Well only Hagrid’s Somerset cider-talk and Fleur Delacour’s cheesy French get through. Dumbledore (Richard Harrisy); Snape (nasal); Luna, and for that matter Trelawney (other-worldly); McGonagall (prim); any Malfoy (snobbish)… All lost to Covid-19. Dumbledore’s passing was supposed to be a highlight of my repertoire. It wasn’t. It was a sad, damp, tired squib. I cried rather more at my poor performance than his death.

 

😷 The amazing, fantabulous NHS. Heroic. Clapped for weekly. Songs sung. Celebs gushing, rightly so; Captain Tom Moore, £22 million raised and counting https://www.justgiving.com/fundraising/tomswalkforthenhs; Nightingale open in record time; Prime Minister’s life saved… The list of amazingness and of gratitude could go on. Are we really going to go back to running down the NHS five minutes after this is over? Can we please, please rethink the definition and pay scales of key workers?

 

😷 One last thought, I promise. It stays top-of-mind and it worries me immensely. Charities. ‘The Third Sector’. Overnight, belts have been seriously and understandably tightened, and fundraising bonanzas such as marathons, Park runs, skydives have vanished. One of the last big measures announced by the Chancellor was a support package for charities. But it will only go so far and to some causes. For me, a case study of one, I’m not sure where I would be physical and mental health-wise without my local MS Centre,  https://www.chilternsmscentre.org/

Or the Bournemouth Lions Wheelchair Rugby Team,

When social distancing wasn’t a thing, yesterday

 

Or the amazing https://shift.ms/ , and all the other major MS charities out there. I need them. We need them.

So watch out world – and my body. If I can’t do a Tough Mudder any time soon, I am thinking something fundraising I can do from home to push my endurance to the limits. I’m thinking a ‘Virathlon’. I may need a week’s more sleep first, but watch this space.

6 Comments

  1. Nickwithms says:

    Nicely written. Glad you made I through, mate.

  2. WW says:

    Thanks so much for writing this. Loved reading it. Hope you and your son are feeling much better now 😊

    • One Man and his Catheters says:

      Thanks in return! Yes, a reassuringly quick bounce back from my son. And a frustratingly slow one for me. But I’m out of the worry zone so I don’t mind!

  3. rachel Webster Brake says:

    Mark -thank-you. I’ve been adjusting, for the last 5 years, to diagnosis of SPMS – basically with denial – (despite double drop foot and using stick and a chair). I hate MS. You have planted a tiny seed of courage, hope and potentiality inside me and maybe a touch of confidence to stop retreating – 🙏

    • One Man and his Catheters says:

      So glad I could help a tiny bit Rachel. No harm in a bit of denial. I think that is a part of my mental coping strategy. But the (bigger) acceptance part of living with MS means I can just get on with living life well, looking for fun and hope and silliness…

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