A quiet MS week that’s just too darned loud to think

As my disease symptoms and comorbidities give me a break, the mind wanders

John Connor avatar

by John Connor |

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Big breath, for my travails below necessitate a catch-up on my story so far.

For once, my multiple sclerosis and the myriad joyous comorbidities it’s conferred on me — trigeminal neuralgia, lymphedema, diplopia, spasticity — have given me a break. So have the fellow travelers who’ve hopped on board because of my shredded immune system caused by disease-modifying therapies — weeks of recurrent UTIs, diarrhea, psoriasis, fungal nail infection, and anal mucus.

Actually, I haven’t written about anal mucus yet, though I’m sure you lot can’t wait for that one. It’s a doozy. I may not talk out of my arse, since it’s well muffled with me sitting or lying on it 24 hours a day, but I sure have written about it ad nauseam.

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While my health is calm, I’m helping grind through the plentiful bureaucracy that’s raining down on Saint Jane, my wife. A lot of that is boringly financial and indeed legal. It’s necessary because we scrape together a small fortune to pay for my three-times-a-day MS carers.

There’s also the constant background beat of sourcing innumerable drugs and the paraphernalia I need to wee and poo. Actually, the drugs on my repeat prescription list have now become easy to procure because of a new National Health Service app. The meds I need only occasionally take eons of chasing. The trouble is that when I do need them, I really need them.

I also need an esoteric drug that can be issued only by a hospital pharmacy. It’s my fault for discovering this drug, midodrine (known in the U.S. by the brands Orvaten or Proamatine), which allows men with spinal cord injuries to have orgasms. Turns out it also works for those of us MS lot who’ve had that function removed. I doubt it’s going to be effective for me for too much longer. It’s a hassle to get the prescription issued, and when it finally is, I have to go to the hospital pharmacy in person to get it.

And the pièce de résistance is the little time I have to accomplish anything, since my carers have to put me to bed at the dreaded hour of 8 p.m.

A man left with an aimless mind

Sorry this column has turned into an all-my-yesterdays reminiscence. I know I once led a relatively interesting life, but that increasingly feels like a dream of the “before times,” until MS started to consume me.

It doesn’t help that I’ve always found it hard to focus on the mundane. My mind now increasingly wanders, and yet I’m more than happy to bathe in populist culture. Concentrating on anything intellectual has become anathema to me. Ooh, that’s an intelligent word. I’ve still got it in there somewhere, folks!

What a boring column, what? That’s what happens when my mind is forced to focus on things like doing my taxes.

I yearn for a sit-down chat with a congregation of Jehovah’s Witnesses.

Actually, having hung out with some for a while, I found them incredibly friendly. But then again, the reason I felt that way was because they were part of my long-lost family in Canada, so maybe I was given a free pass.


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

Cynthia MacFarlane avatar

Cynthia MacFarlane

Thanks , John , for another glimpse into your life with MS .
You mentioned relatives in Canada ..... which part ? I live on the East coast , 30 minutes from the ocean.
There seem to be a lot of people with MS in this part of the country.
Thanks again , and keep writing !

Reply
John Connor avatar

John Connor

Well I was there in 1982. They were in Halifax and Cape Breton. The rest were scattered right across Canada. Know some r still in Cape Breton. I was a strapping 22 year old in them days and about to hitch across the whole of the Trans-Canadian Highway to meet them all. Which I did and hitched from Halifax to Vancouver to boot. Cheers JC

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Cynthia avatar

Cynthia

I have relatives in Cape Breton and Halifax , too. Nova Scotia is a beautiful part of the world !
I also have relatives in Greater London. Got to visit there in 1978

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Kim Ahmed avatar

Kim Ahmed

Dear,dear John , you are so much stronger than us. Please keep bringing your humor for us. I’m living with secondary progressive for 20 years now.

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jan avatar

jan

Wow! Lots of words to look up in dictionary!ead yet
But on mundane issue I have a nail fungus-disgusting to look at- but didnt know it could be anything to do with MS. I am an incontinent cripple - but not dead yet. Would love advice on nail fungus. Jan Vancouver

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John Connor avatar

John Connor

Hi Jan Think fungi r the most successful living thangs on the planet. Without them we'd have no bread - well the risen kind - cakes and horrors alcohol. Mine got in because of an incredibly low immune system cause by the DMT's I'd been taking to tackle the ol' MS. My chiropodist told me you can get rid of them by taking a heavy duty antibiotic for 18 months. As my microbiome [all the non-human stuff in our gut which help beak down our food] is already heavily compromised by the inordinate amount of antibiotics I take to combat UTI's, I live with it. However a daily swoosh of tea tree oil on the nail cuticles keeps it in check. On the plus side my toenails hardly ever need cutting! Tea tree oil is a natural plant antibiotic from Australia. Hope this helps. JC x

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