The Big Blue Bag and a ‘Cast Away’ Bed
Once upon a time, long, long ago, when I was very young, we British children would be asked, “What’s through the round window?”
The line was from a TV series called “Play School.” The swinging ’60s may have been breaking in London, but culturally, this was the happening show for my cohorts and me. It actually ran all the way to 1988 and was so iconic that it became a staple for innumerable comedy sketches.
I’m amazed that when I first started writing comedy in college, I didn’t knock out one of those sketches myself. Instead, I unwittingly lifted from Woody Allen. In them there days, you’d see a film once and not realize that something had stuck. Luckily, not many students would have schlepped all the way to town to watch “Annie Hall,” a journey that usually involved hitchhiking.
There was drinking in those days, and other things, and oh yes, essays to be done. But it wasn’t until years later, when I watched the movie again, that it dawned on me …
Why am I including all of this preamble? Because we’re going to look into the big blue bag! It’s had a lot of use and is starting to fall apart. Why would that be?
Hold your excitement! I know it’s difficult, boys and girls.
Many years ago, in previous columns, I described Lemtrada (alemtuzumab) as having completely immobilized me. (See: “Lemtrada I: This Island Couch” and “Lemtrada II: My Right Foot (Hopefully).”) Spoiler: Since then, my right foot, and indeed my entire leg, have been pretty much immobilized by my apostate immune system.
The gist of those columns was that once I returned from the hospital, I could only make it to the couch on the first level of our home, where I lived for about a month. If you want the sordid details, please read the columns.
As is my custom, I adapted the concept of the columns from a film, “This Island Earth,” a cool, 1950s sci-fi analogy of the Cold War. For this column, I’m alluding to the Tom Hanks film “Cast Away.” The reason is that once I’ve been hoisted into bed, that’s it. Really. So, I have to take everything with me when I go, especially my innumerable pills, which are housed in … you guessed it, a blue bag!
None of these medications are prescribed for MS, but rather the comorbidities it has lumped on me. Well, except the one for fatigue. I’ll start there.
Modafinil is designed for several maladies, particularly narcolepsy, and has been found to work on some MS patients. Thanks to modafinil, I haven’t had to deal with “cog fog” in more than five years. Before that, any work that needed intense concentration was nigh impossible.
Initially, I was taking amantadine, an antidyskinetic medication that subsequently has been found to marginally help with walking. However, it eventually gave me what English batsmen never get: the runs. (Yes, this is a cricket gag; live with it, Americans.)
Spasticity, or muscle tightness caused by contractions, has rendered my right arm and hand barely functional. My right leg also has only a slight range of motion now, but at least it isn’t accompanied by intense pain.
Originally, I was put on the muscle relaxant baclofen. When that didn’t wholly quiet down my arm, the anticonvulsant gabapentin was added, and seemed to do the trick. Occasionally, though, the arm and shoulder would go into spasms. The pain felt like I was being tortured on a medieval rack. A vivid imagination doesn’t help on such occasions.
Finally, my general practitioner prescribed diazepam. If you don’t know what that is, I had no idea at first, either, until I looked it up and discovered it’s that ’80s go-to drug Valium. It calmed things right down. These days, I’m taking diazepam every other night.
Also, today I went to a spasticity clinic after being referred by my neurologist. In addition to physiotherapy with a specialist, splints and Botox injections were offered. So, if nothing else, my arm is going to look très young!
For my trigeminal neuralgia (TN), which causes extreme facial pain, I started out on carbamazepine, but that completely turned me to jelly. My local MS nurse ended up going to a pain clinic and was put on oxcarbazepine by the pain consultant, which is how I ended up taking it, too. And yes, both are anticonvulsants that have happily worked for my TN.
About a year after the TN broke through, I read a study noting that baclofen had worked for a patient in conjunction with carbamazepine. And I had baclofen. As ever, it was the weekend, so I phoned my clinic on Monday and spoke to the doctor. The increase in dosage was sanctioned.
When TN broke through yet again, I was prescribed gabapentin as an add-on treatment. Somehow, I ended up on the maximum dose, which stopped it. But when the dosage was cut back, screaming ensued about a week later.
I was returned to the original dosage pro tem, a decision recently ratified by my pain consultant.
Is that the end of the story? Is it, ‘eck. (That’s northern English slang.) I also wrote a column about how I perchance discovered that the antidepressant fluoxetine, often known by its brand name, Prozac, also works. But it is a convoluted tale that is far too nuanced to précis here. So, dear reader, please, er, refer to the link above.
So far, the kitchen sink, table, crockery, utensils, sharp knives, fridge, stove, toaster, and kettle being thrown at my TN has actually worked. Well, for this moment of blissful peace at least.
For overactive bladder, I take solifenacin. I’ve been on this drug for 10 years and am now in complete control. Except for what comes next.
Chronic urinary tract infection
My chronic urinary tract infections have been treated outside of National Health Service guidelines for well over a year, and by Jove, it’s working! Again, please read this column for more details.
A small bottle of sparkling water also is required for the blue bag. It’s needed to wash the pills down, and it’s lovely to pour into my whisky.
Next week, I think I’ll update my supplements.
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