The thing about becoming increasingly immobile is that your consumption of TV, radio, podcasts, books and, indeed, anything written goes up immeasurably.
Luckily, one of the creative explosions in the recent years I’ve had MS is Scandi drama. I don’t know if it’s really penetrated the U.S. market, although its leading exponent, “The Killing,” was made into a U.S. show.
They are gritty, slow-paced, and character-led Scandinavian detective procedurals. My favorite is actually French and called “Spiral,” which I only mention to illustrate my perversity.
A trope of all of these shows is that the lead character will espouse, usually quite early on, that, “I don’t believe in coincidences.”
So, here’s one. I’ve had a urinary tract infection (UTI) since the end of last November. And even when the rest of my urine tests have been normal, my ketone levels have been off the charts. I’m not starving myself (I wish), and my glucose has been rock solid. My urologist doesn’t think I’m diabetic, and because I’m now a Lemtrada (alemtuzumab) patient, my blood gets tested monthly. If I had kidney or liver problems, a great big red flag would surely have been waived by my MS monitors. Of course, I could be an alcoholic, but I really don’t put the work in!
Then, yesterday, I tested my own urine. I’ve done it so many times now that I think I’m something of a dab hand (I thank you). My ketones were suddenly normal.
“I don’t believe in coincidences!”
What was different? The day before, I’d had my first-ever lymphatic drainage massage.
It was amazing. My legs, which have recently begun to impersonate the hindquarters of an elephant, had reduced to, I don’t know, a rhino’s. Still massive, but no longer so unwieldy.
The battle is on against edema. I also purchased massage boots. They blow up with air and squeeze the lower legs.
Edema has crept up on me — literally.
It started with slight swelling in my feet, but a bit of swimming or some wheelchair tennis dismissed the problem.
Then I started on Lemtrada, and everything slowed. I can walk around in the pool. But for the first time since I was 4, I have to be aware of drowning. Swimming was taken from me. Wheelchair tennis has now also gone. They may both come back as I recover from the effects of the treatment. In the meantime, edema crept up my body.
A few months ago, it was suddenly on my calves!
It’s a damn near perfect catch-22. The more it grows, the worse immobility gets. Then, the more it grows. A vicious circle.
So, why have I not done something about edema sooner?
Having MS is like fighting a world war. There’s the major battleground going on in my brain and spine. I concentrate on that, and resources/focus on other areas are dealt with “as” and “when.”
A second UTI front started early on, then trigeminal neuralgia erupted. It’s started again this week. If I really don’t believe in coincidences, maybe the new edema battlefront has also stirred this up. Edema, up to now, has been the least of my worries.
Brexit has thrown up WWII analogies all over the British political landscape; edema has, perhaps, been my Far East. It was only when the Japanese defeated Singapore so easily (the British never considered invasion from the jungles of Malaya, hence all their guns pointed out to sea) that anybody really noticed.
I’ve brought edema up with my general practitioner, my neurologist, and every MS nurse I talk to. None of them seem bothered by it. Maybe that’s why I’ve ignored it for so long!
Yes, I’ve got MS and read a lot about the subject, but in the end, I’m an amateur.
Until recently, that was, after all, the pinnacle of being British.
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