Columnist John Connor describes how a relapse severely affected his life. He also shares about his friend’s differing experience with one.
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 else would happen, which was hardly forlorn since that had happened to me best mate, Nigel. Sure, his sclerosis nearly killed him 19 years ago, but he has an annual “Nigel’s Not Dead Yet Party.” However, things have slipped a bit recently and so he hasn’t held one this year. I’m somewhat vague on the details, but the 20th party might be at the end of this year and will be a definite shindig.
Nigel has recovered somewhat from his relapse, but he can’t swallow, everything has to go through a stomach feeding tube, he has a fiendish swirling sensation dealt with by heavy-duty drugs (ketamine was his last missive), and his voice sounds like someone trying to communicate while buried by an avalanche.
The rest of my relapses were imperceptible, only spotted by my neurologist who observed my obvious decline between one six-month checkup and the next.
In February of last year, I was poleaxed. I felt how the Polish population in the U.K. must have the day after the Brexit vote. I wouldn’t have to leave the country but I could no longer walk about it!
I was stuck in my bedroom for months. The only times I escaped were when hospital transport carried me in and out for appointments.
The usual massive infusion of steroids was administered and luckily I gained some immediate recovery. My relapsing-remitting status was still viable. I could now stand up, drag myself out of bed on my own (well, most of the time), and finally have a shower! I still rely on help to get out of the shower but I’ve managed twice on my own in the last year.
A new infrastructure was called for. It took a lot of research and the usual excessive paperwork!
So, it’s a year later. What’s been put in place?
Nothing yet. Change seems to be as imperceptible as most of my relapses!
|Read on: Relapse, Relapse, Relapse|