There’s more to life than this (expletive) MS, and other stories

A runaround with a hospital, and some big news kept obscure

John Connor avatar

by John Connor |

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Nobody’s life is eternal, but let’s face it, peeps: Much of the psyche of a multiple sclerosis (MS) patient is internalized. I spend an inordinate amount of time, physical and mental, on my illness.

Yer, OK, I’m not turning this into a therapy session.

Or am I?

A serious family matter has arisen. It doesn’t matter what. I’m not allowed to tell you because of the very ethics of both the Multiple Sclerosis News Today journalism bible and, rather more importantly, my own.

It’s not up there with an appalling illness (we’re a tad maxed out on that, thankee very much) or divorce. I know my regular readers would be saddened to lose Saint Jane, my darling wife for any new perusers not frightened off by my opening line (if you are such, hi there, chat later, must get on) as indeed would be my editors, let alone me.

Still, the news was rocking; the ground felt like it was slipping away, which is particularly scary in a wheelchair, and only tempered by a lifetime of experience with anger softened quickly into care. Our family unit of four also unanimously agreed on how to deal with it.

And that’s enough of that.

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The real power of AI

Ah yes, let’s get topical.

I had a consultant meeting at a hospital yesterday, as I possibly qualify for the latest round of COVID-19 vaccinations here in the U.K. I used a National Health Service (NHS) website, which is, as ever, provided by an outside contractor, to see if any such vaccines were available at said hospital on the same day.

I was in luck: There were. It was duly booked. I had to turn up two and a half hours early to make sure I found the vaccination center in plenty of time, as the appointment was exactly two hours before another one, with a urologist. Good thing we included some wiggle room, because the site was nearly impossible to find — not on any maps within the hospital, and seemingly no staff had heard of it. Fortunately, there were a few glimmerings of recognition as we got closer to it.

It turned out to be the chaplaincy center with a new nomenclature slapped on it: the Rainbow Room. Finding it was up there with discovering that elusive pot of gold.

Hurrah! I actually made it with five minutes to spare — not that it did me a lot of good. No one was there, except one kindly NHS worker sneaking into the room to have her lunch. It turned out we were one of many such visitors that day.

As I had a couple of hours to noodle around, I complained to the booking orifice. I chose that word carefully. It spewed the usual Orwellian puffery about how wonderful it was, how easy it was to communicate with. Of course, it wasn’t; such sites are composed of the wonderful flummery of sending you on an endless loop back to how to contact them. Methinks humans are involved!

Complaining is therefore discouraged unless you’re willing to find the secret escapes from the endless maze. Oh yes, I eventually did. I got a reply this very morn.

And oh, very much yes, seems this ever so wonderful orifice blames the hospital.

If the problem’s not AI, then it’s HI (human intelligence).

You can’t win.

Sleep, perchance to dream

A quick update on last week’s column: The new air mattress is far better than the previous one. It’s also somewhat lower-slung. For the first time in years, I’ve been able to pick something off the floor with my very own hand.

Away to my rest, y’all.

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.


Wendy Roe Hovey avatar

Wendy Roe Hovey

Unity among family members is precious at times like this. Sending all the appropriate vibes across the pond.


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