Old Friends, Broken Chairs, UTI Admissions, and Redemption
The week started with a bang, albeit with a hint of underlying anxiety.
Friends and former work colleagues gathered during the first days of spring to chat in my sun-lathered back garden in South London. COVID-19 lateral flow tests had all been passed.
Previously, we’d spent years working together on my live stand-up comedy show, “The Edge,” at London’s famed The Comedy Store. The Store was the hub that kick-started a whole new comedy tidal wave that swamped British culture.
It was like we’d never been severed by COVID-19, my illness, or the show’s death. That can be attributed to the kind of shorthand that grows between mates and gets burned into colleagues by years of dealing with odd — in showbiz, it’s exceedingly odd — and fraught situations. The jokes, beer, and coffee flowed like nothing had ever changed.
A small comedy mob visits the Connor household recently. From left, Simon Mason, Steve Gribbin, John Connor, and Ian Stone. (Photo by Jane Davies)
The anxiety was due to the controller on my power wheelchair acting up again. Indeed, I was lucky my chair worked well enough to get me back up the ramp and into the house.
The next morning, I pleaded for a technician to come out, but none were available for five days. It had only been a couple of weeks since a technician had to strip the electrical parts all the way down and start again. As it was, I’ve so far been able to nurse the controller through its very weird — or maybe wired — behavior. It’s like dealing with a teenager. Nuff said.
And so, on to the redemptions.
Four days later, the chair tech visited. I had managed to plead my way to his arrival a day earlier than expected. He agreed that the problem was caused by a wire that connects the chair’s controller to a modem down below. I write this as if I know what is actually going on — I don’t, but it was a good guess.
He replaced the wire, and I was back in the powered wheelchair business.
I called the service company to thank them profusely, and they were gobsmacked. “It’s usually the other way round,” they confessed. That is slagging them off. Expressing praise for people that help us is a must, as they’re not exactly well-paid jobs.
This has all gotten to be a bit like — OK, a lot like — a diary. It’s been a testing few weeks.
The final redemption is that something I’ve been swerving around the U.K. medical system with — a long-term urinary tract infection (UTI) — has finally become medical policy, as described by this iNews headline: “Chronic UTI infections: NHS finally recognises debilitating condition exists in online advice for patients.”
The article even notes, “There are specialists within the UK who are treating for the condition, including an NHS [National Health Service] clinic run by the Whittington Hospital in London.” I’ve been a patient there for over a year now.
I’d been able to research various UTI treatment strategies — which came about outside the normal NHS channels until now — with the help of a very clued in local MS nurse I had at the time. She has since retired, taking all that knowledge with her.
I had even tried phage therapy, an alternative to antibiotics that uses bacterial viruses called phages to treat bacterial infections like UTI. I obtained the phages from a long-term clinic in Tbilisi, Georgia. The treatment was partially successful, but it was also horrendously expensive. To actually get it to work, I would’ve had to stay in Tbilisi for a good while, which is impracticable given my current level of disability and ongoing geopolitical circumstances.
It’s weird how health can project you into current affairs.
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.
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