Reflections from the front line: Things are looking up, eventually
Despite MS and severe illness, a columnist notices improvements in his movement
Oh yeah, I’ve become quite the expert on ceilings. If you spend much of your life prostrate, it’s hard not to. The very first column I wrote for Multiple Sclerosis News Today opened with this very topic. As it was an unsolicited spec piece, I was pleasantly surprised to be offered a weekly column two days later. And six years on, I’m still going. Somehow.
I’d actually written about trying to get back on the couch after a fall as a humorous story to amuse myself. Because I’d started pursuing journalism as a 19-year-old knows-nothing-knows-everything undergrad at my university paper in 1987, this was hardly onerous. A lifetime spent in comedy also means that I find writing the only tolerable way of filtering my life with multiple sclerosis (MS).
And that, ye faithful reader, is as serious as I’m ever likely to get.
Onward with this week’s tale.
Signs of life
My new room in the rehabilitation center at Queen Elizabeth’s Foundation for Disabled People was truly enormous. It was about half the size of the entire hospital ward I’d just spent two months in — and that housed six of us! Even better, no one was shouting 24 hours a day, every day, down the hall.
And the ceiling was tremendous. It was like having my own personal suspension railway above me. Thomas the Tank Engine had gone all inverted. This was a huge improvement on the depressing graying white of my hospital ceiling.
The multifaceted hoist could take me nearly everywhere, even right into the wet room. The shower chair was also designed to fit directly over the toilet pan. Though, as anyone with MS knows, this is highly redundant in our case. We can sit for hours without anything happening.
Unfortunately, I didn’t get many such trips to the wet room as I had diarrhea for an (un)solid three weeks. My various carers certainly didn’t want to have to clean up a daily Jackson Pollock. As I was on iron pills, this offering would at least have been of the deepest artistic black!
The local doctor put it down to some sort of virus. She was undoubtedly right, but I wonder if it may have been the food. I’ve been fine since I finally got home two weeks ago.
But back to the good news. Slowly and amazingly, my seemingly decrepit body began to show signs of life. Like Frankenstein’s monster (though that is debatable), my right hand began to move. The next day, my arm followed. Then, my completely dormant right foot started to wiggle a bit. Nothing excessive — just the big toe. Hey, that hasn’t moved for years!
I was deeply confused. My rehab hadn’t even started yet, and the illness that had completely banjaxed me had somehow made me feel better than I’d felt in years.
Synchronicity, by its very concept, works in mysterious ways. My phone rang, and it was my MS consultant. Presuming he was responding to one of my wife’s email missives, I was extremely grateful for his call. Hearing the very thankful tone in my voice, he asked matter-of-factly if I hadn’t been expecting his call. Turns out it was a scheduled phone consultation. I had no idea; months away from home had completely disorientated me.
I told him of my newfound movement, which was so much better than before. I wondered if somehow my demyelination had improved?
“No, no,” he replied, “that never gets better. Your persistent urinary tract infections were just making everything worse. That’s why your right arm is working better.”
No matter that the arm was moving considerably more than before; all the associated pain was gone. Hey, now, up and at ’em.
However, I still had diarrhea and the pain of a permanent catheter, which I had to keep in place after the hospital because of the diarrhea.
More on that next week, methinks. You lucky people.
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.
Wendy Roe Hovey
Fully disoriented by your use of the non-word "disorientated". I trust your tongue was jammed in your cheek. If it will still go there!
Ah, but then I thought better of it and Asked The Google. Found this:
"Disorientated is a British English word, while disoriented is an American English word. disoriented and disorientated can be utilized instead of one another, yet it will bode well contingent upon where you are found."
Since you and I are "found" on different sides of the pond, I yield!
Ah, u were good & proper, disorientated.