45 Minutes in the Life of John Peter Connor

45 Minutes in the Life of John Peter Connor
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I have two regular carers at the moment.

The first to arrive greets me with her usual efficacious, “Good morning, John!” She’s loud enough to wake the whole street. Luckily, my neighbors should be up anyway, as my carers are booked for 11 a.m. each weekday.

I have mentioned in my previous columns and in my warblings as a moderator of our MS News Today Forums (where I’m allowed more words than on Twitter!) that I’ve spent the majority of my professional life avoiding getting up in the morning. I’m certainly not going to start now that I’m actually paying for it!

My other carer is far more sedate with his “Good morning, John.” He’s an enigma. As masks are worn at all times, I only see his eyes. These narrow if he disapproves of something.

Both ask me how I am. I presume it’s part of their training. Until I try to get up, I have no idea. I’ve done the “Well, I’ve got MS” line and got a snicker! I’m sure they’ve heard variations of that many times. But now I can never do it again. Well, I could when different carers turn up, but it even strikes me as a tad hackneyed.

The routine is to first get me sitting on the edge of the profile bed. I raise it so they don’t have to bend when they push a nylon slider under my feet. I can then swish my legs out and grab my ladder.

OK, explanation required: I wanted to be able to lift my torso on my own, especially if it’s an emergency (er, when I need to use the bathroom) and only my wife is on hand. So, I hit the net and procured a four-rung rescue ladder for cave diving. Who knew it would also work for MS patients trying to escape their beds?

A ladder to escape my bed cave. (Photo by John Connor)

Thankfully, I also have a hoist, but if I’m ill enough to need it, there’s little point in aiming for a shower. It’s a bed bath, and the hoist gets me into my power chair at the end.

At the moment, I can still get onto my commode/shower chair by using the Molift Raiser, and then I am carefully pushed to the shower. I can shower by myself. While I’m there, my carers make my bed. It’s like coming back to a serviced hotel room! Then, they put on squeezing wraps to contain my lymphedema, turning the previously laborious task into something of a Formula One pit stop.

This really transformed life for my wife and me. Now, someone just has to let the carers in, and I’m sorted for the day — except for that other ol’ bodily function that can strike anytime!

Time is limited, but there is room for laughs, especially when barrier cream is being applied under my — there’s no delicate way to put this — testicles. My female carer cheekily asks if she’s doing it properly. She’s referring to the previous day when a 60-something carer-in-training was tentatively doing it and I had to ask her to delve deeper. As I put it, “to get my money’s worth!” If you live in nappies and are constantly sitting or lying down, the bed sores can (and have) become horrendous!

Then I replied with a joke that unfortunately I can’t repeat here.

My carer stopped what she was doing and cracked up in laughter. Her knees bent. As I had her on the ropes, I followed up with, “I can’t even get my 63-year-old wife to do that!”

Her legs bent further. Thankfully, the other’s eyes widened this time.

It was a good start to the day.

***

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.

In the ‘80s, John created the first regular column about the burgeoning London stand-up scene. In 1990 he wrote a book about its effect on the Edinburgh Festival: “Comics: A Decade of Comedy at the Assembly Rooms.” That year he also devised and ran a live topical stand-up team show at The London Comedy Store, The Edge. (It was destroyed in 2020!) In 2009 John was diagnosed with RRMS, which cut short his main job as a TV casting director for “Black Books,” “My Family,” et al. Now, John writes “Fall Down Get Up Again,” an irreverent journey with MS, and also serves as MS News Today Forums co-moderator.
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In the ‘80s, John created the first regular column about the burgeoning London stand-up scene. In 1990 he wrote a book about its effect on the Edinburgh Festival: “Comics: A Decade of Comedy at the Assembly Rooms.” That year he also devised and ran a live topical stand-up team show at The London Comedy Store, The Edge. (It was destroyed in 2020!) In 2009 John was diagnosed with RRMS, which cut short his main job as a TV casting director for “Black Books,” “My Family,” et al. Now, John writes “Fall Down Get Up Again,” an irreverent journey with MS, and also serves as MS News Today Forums co-moderator.
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