Wednesday, 28 June 2017

mother of all relapses: the return

MS has to be one of the worst conditions to live with - for the person who doesn't have the condition, that is.

Of course it's unpredictable for us - but when we wake up, take stock and learn what we're dealing with that day, at least then we have one job: deal with it. My wife works, looks after our home, organises pretty much everything for our daughter, and she has to be a helpless onlooker to whatever situation I'm in that day.

I finished my course of steroids on Friday but the next two days were just weird. One day I felt like I was starting to get on top of things, the next I looked green and was more or less immobile.

Sleep was hard to come by, but Sunday was the worst. Overactive bladder meant I had to get out of bed at least 6 times in the night. Plus I also had the latest in an evolving series of trips and falls, going arse over tit into a rotating fan, which added to my ever-growing collection of lurid bruises. What larks. At least I didn't wake anyone up this time.

Monday I spent lounging around watching TV and just trying to get some rest. I also ate some food that I actually wanted and which didn't taste completely crap (only baked beans on toast but it hit the spot). So I was feeling pretty positive (if utterly banjaxed) when I turned in that night.

Unfortunately after a good chunk of sleep, I tried to get out of bed. I swung my legs over the side and then couldn't raise my upper body off the bed. After about 20 minutes of grunting and straining (yes, and swearing) I got myself onto the floor and could go no further.

We called my father-in-law who came over and was able to bear some of my weight in order to get me to the bathroom. Later I called the MS Nurses (again) and they asked me to come and see them (again). At that point they were talking about me being admitted for a full review.

When we got there, the neuro (following some physical tests and a conversation with the top prof we saw last week) decided that this was more likely to be a continuation of the relapse. Not necessarily evidence of progression (although more tests and a new MRI will be needed once I've hopefully got over this relapse).

As I responded well to them in the past, they've put me on a further course of steroids, spread over five days just like in Relapse 2012. Yeah, I know.

We also talked to the lead MS Nurse about the number of different drugs I'm taking. Talking about Fampyra, she said that a lot of people's experience with it shows a dramatic improvement followed by a levelling and eventual dropping off. Which certainly chimes with the Neuro who said that it's clearly not working currently and I should stop taking them, at least for a while.

To give Mrs. D a break, I'll be staying at my parents' house, at least while the disruption of another round of steroids runs its course. The stress of me being in the house was making her ill - so at least this way she should get more of a stress-free night's sleep.

My parents? Maybe less so.

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