Having My Own ‘Long Bad Friday’

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by John Connor |

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In truth, my long, bad Friday started on Thursday afternoon at 5 p.m., although it seems wrong in the middle of a black, midwinter night to still call it afternoon. Still, if you live in Alaska, summer nights never even start! (OK, I’ll stop musing about the vagaries of Earth’s geography.)

My phone rang. The staff at my local caregivers’ office imparted the bad news: No carers were available to come in early the next day at 8 a.m., when at least it would be daylight. My regular time is 11 a.m., but I had a doctor’s appointment in North London at 11:30, a two-hour drive from the edge of South London, where I abide.

They were very apologetic — someone in the office had informed me, erroneously, at the beginning of the week that it had all been sorted. Knowing about the current shortage of carers in the U.K., I had started working on reorganizing this back in mid-December.

On top of low pay and not being paid for travel between jobs, the U.K. also now faces its self-imposed Brexit. Previously, 22% of care workers were from the EU, and most have since retuned. During our many pandemic lockdowns, care jobs had the benefit of essential worker status, so it was one of few guaranteed jobs. This is no longer the case.

So, this was no one’s fault, except those over 50 who overwhelmingly voted for Brexit. This group usually votes at a far higher rate than any other age group. Our population is currently lopsided from the splurge of us baby boomers after WWII. This is not a political point, but a very practical one — the overwhelming group of people who may need their bottoms cleaned for them now find that there is no one left to do it! Ah, the demographic irony.

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Plan B was our only solution, a wheeze I’d thought up a few months ago. I’d go to bed with my lymphedema wraps on, get up without using my trusty anal catheter, and then have time only for coffee, toast, and my first swallow of the innumerable drugs I take for my tranche of MS-induced comorbidities.

My wife and primary carer, Jane, drove us to the hospital in our heavily adapted van, where all went well. The appointment was to deliver a fresh urine sample — my specialist urologist needs it within two hours — and have a requisite blood test.

Instead of rushing back afterward, we went on a lunch date at the hospital. When you’re in a wheelchair, this is usually the only solution, as the logistics of going anywhere else can be horrific.

Like at every hospital canteen we’ve visited, and that’s a lot, food that a vegan can consume is severely limited. The go-to is a plateful of chips, mushy peas — a traditional northern English dish that has now thankfully infiltrated London — and the requisite baked beans. Jane went for beans on a baked potato. She did, however, discover two vegan blueberry muffins, something she’d never usually eat, but it was her only choice.

long bad Friday | Multiple Sclerosis News Today | Columnist John Connor eats a vegan blueberry muffin in the café at London's Whittington Hospital, where he's on a lunch date with his wife, Jane, after a doctor's appointment.

Columnist John Connor has a lunch date with his wife, Jane, at the café in London’s Whittington Hospital. John “really knows how to treat a gal,” Jane says. (Photo by Jane Davies)

Arriving home afterward, we were both shattered. Nevertheless, one exerting task remained for both of us. The exertion was all on Jane, though, as it was time for me to go to the wet room for my now urgent daily ablution and a much-needed shower.

Next, it was 6 p.m., and I could just about sit upright. Bedtime. Very early.

Although I had only been in a wheelchair all day, as always, the physical stress of the day really got to me. My neurogenic right arm was locking my shoulder into the beginnings of a spasm. It wasn’t my night for taking diazepam, but I had no choice. I had to take it, dementia be damned.

I slept like a drugged baby.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Bonny avatar

Bonny

Thanks many times over from a fan of yours in California. I enjoy your columns very much. You got a raw deal at a young age, yet your writing always exhibits humor and wry acceptance rather than bitterness and self-pity. As an old lady whose MS wasn't diagnosed untill a few years ago, I am inspired by your attitude ( which is in stark contrast to mine). You are an excellent role model. And you make me laugh out loud sometimes!

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John Connor avatar

John Connor

Ah, yes youth.
'When I'm 64' will you still feed me? Now need to add the lyrics 'Will u get me out of bed? Will u put me into bed? Will u wipe my bot-bot?'
Only, I am now actually 64!
I led a full, somewhat bizarre, life of my own choosing till MS felled me.
My 'Youthful outlook' in my writing is probably 'cos I've never grown up.
MS has curtailed everything else but it's not having that!!
Ta, 4 the kind words.

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