Thanks to MS Progression, My Weight Became a Problem
Columnist John Connor narrates his ongoing difficulties with MS and weight gain
My weight went off the scale when my multiple sclerosis (MS) meant that I could no longer safely get on the scale.
This was probably about four years ago. In them there halcyon days (for me, anyway), I still shared our second-floor bedroom (first-floor, for those of us here in the U.K.) with my forbearing wife, Jane. I say forbearing because toward the end, I only ventured out of it to empty poo, via propelling myself on my wheeled commode to the bathroom. Our bedroom was now my office, lavatory, and dining room. Hardly a salubrious partner to share a room with.
The only time I left was for medical appointments, parties, and to run my comedy show on Tuesdays.
Stumbling downstairs was relatively straightforward — I went with the flow of gravity. Getting back up them, however, was increasingly becoming like scaling the hardest indoor climbing wall at the local leisure center, especially after the fatigue of working all evening and, ahem, a few drinkypoos. (That was just bonding with my team. Hey, it’s showbiz love.)
One Tuesday, sometime in the early new year of 2019, I knew I wasn’t going to make it up them. Anyway, a new hospital bed had just been installed in our freshly decorated front room. I wheeled into my new bedroom and pulled myself into bed. I would never make it back up those stairs again. Jane and I were now a Victorian (or occasionally, presidential) married couple with separate bedrooms.
Then, within seven months of my Ocrevus (ocrelizumab) treatment being ended in December 2019, due to a shot immune system, two mega-relapses followed. These put me into a wheelchair that had to be powered. Oh, yes, there also was a new pandemic that had flipped most of the world to science fiction mode.
COVID-19, with next to no immunity and no vaccine yet available, was for me a death sentence. Was I now paranoid of everyone? You betcha.
I gave up. I increasingly ate more, which became a neurological cycle of addiction in which the more I ate, the more I needed. A loaf of bread had to be purchased daily. The load of my morning toast was breaking the plate. There was no thought of calories when I had those crisp slices of wholemeal bread lathered with peanut butter and a soupçon of red jam. All of my many trips to North America had rubbed off on my toast.
I had no idea of my weight. I kept eating.
In March 2021, I was carted off to the hospital with cellulitis. There, they measured my weight when they had to put me in a hoist to give me an air mattress. I was shocked to learn that I was now 18 stone (252 pounds). I’d never been that heavy before! Previously, 16 stone (224 pounds) was enough to make me reduce my calorie load.
Chez-moi, I had a big basket of treats to grab at my own pleasure. This meant I didn’t disturb Jane, whose office was now the dining table in the kitchen. Her proper office (and long, long ago also mine) was up in our converted loft. This was now occupied by her brother for just over a year. Lockdown had trapped him here. And my youngest son was back for the duration, so his room was also denied to her.
On my return from the hospital, I axed the basket of treats. But it wasn’t enough — my brain craved food.
Last month, I went to the hospital again to be assessed for a clinical drug trial. They had to give me an MRI, during which a hoist was needed to transfer me. While I was in the hoist, I inquired about my weight. I was gobsmacked at the response: 20 stone (280 pounds).
In response, I’ve been radical lately, eating small, controlled breakfasts and then nothing till dinner. With no seconds! Amazingly, I’ve already lost half a stone (7 pounds).
I also found out they have wheelchair scales at my MS therapy center. They weighed my wheelchair while I was in the standing frame, and once I was back in the chair, they weighed the lot and deducted the chair’s weight.
The good news is I’ve been self-catheterizing for over a decade, and it’s just gotten a lot easier. I can now see what I’m doing, rather than spending eons trying to insert the catheter. Before, it was like trying to hit a bullseye on a dartboard with a blindfold. For my American readers, darts is like axe throwing — except you can play it down at the pub.
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