I’ve been a co-moderator on the MS News Today Forums for a couple of months now and recently wrote a reply to a newly diagnosed patient, Jono. He’s only had MS for a month. I found myself writing what I wished I’d known when I was diagnosed. Now,…
Fall Down, Get Up Again- a Column by John Connor
Last Thursday was the hottest day ever recorded in U.K. history at 101.6 degrees F. Heat sensitivity is enough to reduce me to the puddle I described last week. But it doesn’t explain the shaking of my body and the extreme pain in my right arm Thursday night. Not…
It’s 1 p.m. in the U.K., and it’s 90 degrees Fahrenheit. I can hardly move due to the heat. My left hand is typing this. The rest of my body has shut down. Tomorrow is forecast to be the hottest July day in recorded history in the U.K. I had set…
OK, this was my first test. Accomplish this and Day One should be a breeze. The trick is not to panic. You’ve crossed a continent with your thumb — now all you have to do is get out of bed on your own. You manage it most days…
Eight Days a Week
It was such a jam-packed week that the flavor was definitely multi-fruit! It included a meet-cute with a barber inspired by Richard Curtis (rom-com writer of “Notting Hill” and others). As no romance — or indeed, bromance — was involved, it was more of a meet-cut. I’ve…
It’s taken over a year to conceive, organize, and plan, but yesterday, I was able to leave the house on my own. I even checked that I had my house keys on me as, in theory, I could now also get in on my own. This is not strictly true:…
Nearly Thwarted by a Step
Even in my able-bodied days, I was hardly Channing Tatum — who is? Model, actor, dancer, singer, and he even has the audacity to be funny. There might not be any real comic book heroes in the world, but he is possibly the closest to an X-Man we’ve got.
What the Falck Is Going On?
Stranded. Not on a desert island but in an empty hospital ward. Earlier, it had been filled with fellow MSers getting their Ocrevus (ocrelizumab) infusions. I write “fellow,” but as ever, we blokes were in the minority — there were only two of us. Research indicates that more…
Thank You for Sharing
“Thank you for sharing” is a clichéd phrase I never expected to use, or indeed have used toward me! However, it is often bandied at the end of these columns by the select few who like my work, so I can’t be too churlish about it. Why write about it…
I looked at the road, then west to the horizon. It was the Trans-Canada Highway. I was standing just outside Halifax, Nova Scotia. A 23-year-old intending to hitchhike the length of the Trans-Canadian to Vancouver. I’m English but knew this was a rite of passage for young Canadians.
Last Monday night, I was strangely in the audience at London’s Comedy Store. At a rough calculation, I have directed about 1,500 shows there, have been in the audience for maybe 20, and even have been on the stage a few times. One doesn’t count, as I was drunkenly…
Sunday Morning
It was a sunny Lower East Side of Manhattan Sunday morning. The bulbous New York Times was shoved, just about, under my arm. I drank a coffee in the sheltered backyard of a diner after surviving the denizens of the street to get here — this was good shelter.
Exactly one year ago on this day of writing, I was down and out. This year, I’m not exactly fighting fit, but the same set of circumstances has pushed me the distance. But it didn’t floor me. OK, OK, I’ll stop with the pugilistic metaphors — it’s not exactly…
Second in a series. Read part one. I’m actually driving! I really can’t remember the last time I had done so. The car I’d had for years from Motability, a car and scooter program in the U.K. to help the disabled enjoy worry-free motoring (it really works, folks), had…
First in a two-part series. Do I give in or fight? I’d had all the tests, and in the summer of 2009, my fears were confirmed: I had MS. My first question was, “Would I end up in a wheelchair?” My neurologist, who must have given the answer innumerable…
Last weekend a mother brought 4,000£ ($5,200 U.S.) of medicinal cannabis from Holland into the U.K. for her daughter with severe epilepsy. It was confiscated by customs. Last year medicinal cannabis was partially legalized in the U.K. when a similar incident happened. Doctors can now issue prescriptions.
Going Mobile
In February of last year, I stopped. Walking more than a few steps was suddenly impossible. I’d fought, taken every medication and supplement possible, but I’d lost. Maybe positive thinking and mindfulness would have helped, but for me, that was a step too far! Research, organization, and…
Always in the Kitchen at Parties
My nephew James has taken an interest in this column since having a starring role in it a few weeks ago. We were at his mum’s 60th birthday party. He casually asked, “What are you going to write about next week?” A good question. I answered with a…
Singing the Bureaucracy Blues
You think getting a chronic illness is as bad as it’s going to get, but then you quickly realize that you’ve been catapulted into a netherworld. There’s no stepping through the back of the wardrobe into Narnia — I’m pretty sure C. S. Lewis didn’t envisage disabled access furniture!…
Julian, the doorman at the London Comedy Store, is giving me his biweekly telling off about drinking. It’s biweekly because he and the other regular doorman, Mark, take turns helping me. I’ve known both of them for more than 30 years, though to be fair, in the…
Minority Report
In the earlier days of my MS, I could still walk a bit. It was not enough to risk the maze of an airport, so I traveled sensibly in a wheelchair and preregistered as a disabled passenger. My then-teenage son reduced the boredom by placing me facing into suitable…
Hair We Go Again
I can’t quite remember when I got hooked on the writings of Jack London, but I don’t think I’ve ever quite shaken off his Nietzschean-inspired “Superman” ethos. It comes in handy for surviving in the wilds of the winter in the Yukon and forcing yourself to build a…
Relapse, Relapse, Relapse
Relapses can be sneaky. They can scythe you down. I’ve been dealing with multiple sclerosis (MS) since 2006 and I only consciously remember two relapses. The first relapse was two years after I had been diagnosed with sclerosis. There was the possible hope from my first neurologist that nothing…
Stuck in Delivery Limbo Land
Take a minute … and relax. It’s been a fraught few weeks of numerous solo hospital visits, as my wife was first dealing with a dying father and then helping to organize his funeral, estate, and her own turbulent emotions. Her mum had died only four months ago.
OK, I’ve used a typical tabloid headline to draw you into a column about dealing with lymphedema. Well, the topic is not exactly sexy! Though my calves are now extremely toasty due to being effectively embalmed. Lymphedema has been plaguing me for years now. There seems to be…
The Hospital Trilogy
If MS was just about MS, it wouldn’t be easy, but it would be a lot easier. It’s different for all of us. For me, MS means ambulation is practically impossible. I could manage a few yards, but the risk of falling and spending the day as an upside-down beetle…
A Voyage Round My Father-in-law
This is going to be a hard column to write, and quite possibly it breaks all the rules of column writing by being a tough one to read! I’ve always found humor handy when facing adversity. On the Titanic, my last dying bon mot might well have been, “Hey,…
Do What You Can
One of the hardest things I’ve had to accept with MS is the necessity of asking for help. Pride and self-reliance dissipate remarkably quickly when you find yourself splayed on the floor and you no longer have the capacity to get up. In extremis, I then ask for help.
It’s Back-to-School Time
Well, it feels like it, at least. I just had the whole of the Christmas-New Year’s period off because of how the dates fell. If you only have to be physically at a work venue one day a week, it will get you like that. If I manage another…
What a Relief!
New year, new beginnings — not a chance. Theresa May still has Brexit as her waking and sleeping nightmare, and I’m still battling urinary tract infections (UTIs). Over the last few years, I’ve probably written about this more than anything else; it’s the one thing the medical establishment…