Living With MS: ‘That Was the Week That Was’ Truly Awful

John Connor avatar

by John Connor |

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Monday

Unlike Prince, my Monday wasn’t manic. It was barreling along quite sedately until my wife, Jane, casually noted, “Remember, you’ve got a dental appointment on Wednesday morning.”

Er, no, I hadn’t remembered. It was somewhat churlish of me, as I’d been waiting for this appointment for nigh on a year. Keep reading, I’ll reveal all.

I’d spent all of Sunday organizing everything for two doctor appointments on Tuesday and Thursday — sorting out the various documents I’d need and the forms I still had to fill out online. Organization of my personal affairs has never been my strong point. You’d think I’d be good at it after working as a journalist, comedy producer, and TV casting director. All of these required intense attention to detail, hard deadlines, and the herding of incredibly slippery egos.

Now, at least I can blame my failings on multiple sclerosis (MS). So I will.

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Scramble time. There was no way to write my column last week, so I canceled immediately. I also canceled my carers for Wednesday. Nor could I do anything as co-moderator of our Multiple Sclerosis News Today Forums, except last Monday. I might be able to weigh in on Friday, though I was likely to be utterly shattered.

It turned out I didn’t even have the chance to do that.

Tuesday

I was off to see my new urologist. Oh, I’ve seen many of them. This time it was at my own instigation. I’m used to doing my own research — well, on the internet, not conducting my own experiments. Fortunately, the appointment was in the afternoon at my local hospital. This meant my regimental ablutions — every morning at 10 a.m.; welcome to the joys of the anal catheter — were thankfully undisturbed.

The subject of my appointment was sex for the male with MS. I was expecting a battle, but the consultant was miles ahead of me. Interestingly, MS patients were rare, if not nonexistent, for him. The battle turned out to be with getting the drugs he had prescribed, due to National Health Service (NHS) guidelines. All the pharmacists involved have been incredibly helpful. More of this in a future column, methinks.

Wednesday

I had an appointment at 9:15 a.m., the crack of dawn for me. I slept in my lymphedema wraps all night so that I could be up and ready for action at the allotted hour.

There was no chance of changing the appointment time. As I’ve previously mentioned, I’d been waiting nearly a year for this referral. The original referral letter had somehow been lost, so I was given all the phone numbers to sort it out. Nothing is simple.

Our original dentist had retired. The downstairs surgery had then been cut in half and transferred to the hygiene therapist, so only checkups could be managed. And I now needed a crown.

Once we’d stopped our insane TV casting business when my MS got to be too much, we had the time to find an NHS dentist, which saved us a fortune. We still had to pay, but it was far cheaper. That was years ago; today, getting an NHS dentist anywhere in the U.K. is nearly impossible. It’s like finding a hen that has reverted to its original dinosaur roots, replete with razor teeth. So we clung on like freestyle mountain climbers.

Thankfully, my care will now be taken over by the new facility — where there is enough room to swing a tiger. And yes, I know that phrase comes from old navy discipline and swinging the cat o’ nine tails. But it was big.

I’d hoped to get away without my complex daily visit to the wet room, but my regimental system demanded it. After that was dealt with, I ended up in bed at 4 p.m.

Thursday

Nothing complicated. Off to see a physiotherapist at my new spasticity clinic. As it is in the middle of London, I get transportation to the hospital. I’m far too disabled to travel on my own in a taxi anymore.

Handily, it was a midafternoon appointment. But as is the way of hospital transportation, I didn’t get home until 7:30 p.m., and was absolutely shattered.

Friday

Thankfully, a day of rest.

Oh, no it isn’t. My phone rang while I was having my morning shower. Luckily, my new phone is waterproof. My glasses were ready. Another new comorbidity to report. I’m really stacking up those future column subjects, folks.

We dashed out of the house. As it was a pleasant, yet balmy, afternoon, and our destination was only a couple of kilometers away, we ventured out on foot and wheel. I replaced the dog that Jane had recently been looking after.

We did a bit of shopping and then had a happy meander home.

Luverly.

Only Jane had forgotten to grab her keys. Mine were not in my bag as I’d hoped.

Jane drove off to where our oldest son was working to borrow his keys. I settled down to watch a movie on my phone on the porch — with a packet of peanuts. I’d definitely gotten the better part of that deal.

Then, one of my many nephews turned up. We nattered till Jane got back.

What a fatiguing week.

For Jane, who had to deal with the lump of me nearly constantly, it had been “truly awful.”

And I’m still looking for my keys.


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

Jude ricuhardson avatar

Jude ricuhardson

TV loss is our gain. Love the irreverence and the excruciating (to some) detail. What are lymphodoema wraps and what are they good for?

Reply
John Connor avatar

John Connor

Hi Jude
Ta indeed.
Sorry for my lackadaisical reply - but I just took two weeks off as revealed in my latest col.
Lymphodoema wraps seem to have been in use since the ancient Egyptians. We have a secondary circulatory system of our lympf fluid. This gets pushed round the body by walking.
In cases like mine it just builds up. With the wraps my legs are no longer rhino shaped.
Cheers John

Reply
MADELINE l NEWTON avatar

MADELINE l NEWTON

busy week but i think it turned out great for both of you ...still enjoying life even if it is going to all of the doctors ...still able to ...enjoy a slow motion one next i hope....loads of love and laughter in your life...

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