MS, Epiglottis, George Washington

Relapse or no relapse, there was not much I could do. After the MS nurse said tough it out, wait and see, I did just that. I put up with feeling a bit shitty, like she said. And after five days of not being able to feel or use my hands and fingers as I should, not being able to cut up even a fish finger, I woke up and found I was (just about) able to hold a knife and fork again.

I was what seemed like suddenly back to where I’d been before the relapse. Or not relapse. And as seems to be the way with these ‘miraculous’ recoveries, I couldn’t actually recall how it had felt when things had not been working correctly. There must be a name for that. Some sort of Effect. Some sort of Syndrome. It’s as if the brain doesn’t want you to remember the awfulness of what just happened.

It’s been like it before. In the old days when I had relapsing/remitting MS, I did at various times lose feeling down my right side. I’ve had cartoon-like double vision. I’ve had the sensation of looking at the world through an out of focus lens that is called optic neuritis. And in each case I recovered. And straightaway forgot how the trauma felt. But that’s the way it is with RRMS.

With RRMS there is a relapse, then there might be a remission. And that cycle repeats. But with every remission there comes an ever-increasing level of residual disability. Usually.

Because everyone’s MS is different. One person’s relapse might last for a short time and lead to a complete recovery. The next person might have a relapse that lasts weeks or months and they never properly get better from it. And no one seems to be able to predict which way things are going to turn out.

Then when RRMS becomes SP (secondary progressive) MS, as the textbooks say it almost always does, there are not supposed to be relapses anymore. Except you can have something called relapsing SPMS where there are relapses. Confusing, isn’t it?

But whatever, Wednesday came around and I had to shake off my confusion and switch attention from one chronic illness to another. MS one day, cancer the next. I skipped past COPD like it wasn’t there at all. I had an appointment with Mr A and  Clinic E to get to. An appointment with that camera on the end of the tube that goes up my nose and down my throat.

Mr A had his video screen back. And I could crane my neck just enough to see the lens-eye view. He said have a look, there it is. And there it was, that flappy bit of gristle we all have. My epiglottis didn’t seem much different, as far as I could see.

But Mr A is the one with the experienced eye. He said the swelling had come down. A bit. He said what do you think. I thought what do I know but asked him do we need to do anything, allowing us the illusion that I had some sort of control. I really didn’t want to go through that biopsy palaver again.

It would have involved a general anaesthetic and probably an overnight stay in hospital, with all the logistical hassle that comes with it.

Now Mr A has seemed quite happy to start wielding the knife on me at the drop of a hat in the past, but this time he rather changed his tune. He said he thought we (meaning he) should wait. He thought the swelling would subside some more. No need to do a biopsy. Not yet.

So an appointment in two months time. Two months of trying not to fret. Of trying not to do too much looking up of ‘epiglottis’ on google. And certainly not ‘epiglottic cancer’, which is, as they annoyingly say, a thing,

But you can learn interesting things from google searches. Like for instance, without all this I would never have known that George Washington, first president of the USA, died from a sudden and nasty bout of epiglottitis.

Epiglottitis is a severe and painful inflammation. Which is plainly what I haven’t got. Along with wooden teeth which, contrary to persistent rumour, George didn’t have. He was apparently a martyr to his dentures though. His ill-fitting, ivory dentures.

I will be receiving a new appointment to see Mr A in February.

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