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

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.

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