A) you realise just how lousy you’ve been feeling over the past few weeks / months. I’ve started to feel a bit more awake and stopped feeling quite so brain dead. Also, my legs are still rubbish but I can once again dorsiflex my left foot. I’ve already got permanent foot drop on my right, for which I use FES, but the tiny bit of walking I’ve done over the last fortnight has been with FES on the right and a foot-up on the left (plus walker). Before that I had a few weeks where I couldn’t do any walking at all.
B) symptoms that had been missing due to extra numbness etc. start to come back. In my case spasms, I’ve had a couple of days of nasty spasms in my legs, and most annoyingly, bladder spasms. I knew they’d been bad because I’m now waiting for a referral for bladder Botox but I’d not noticed they’d got a bit better till the last couple of days when the spasms have become constant again. I’ve tested for a UTI (negative) about 6 times in the last 3 days cos I’ve started wanting to go all the dam time. Again.
C) I’ve started doing too much as the fatigue lessens. Now is the time I need to really actively practice fatigue management. This morning I did a little bit of bathroom cleaning (I’m a bit OCD about the bathroom, you could almost call it anally retentive!!) then decided to clean the kitchen sink, and thought about descaling the coffee machine before being a bit more sensible and stopping! The trouble is I was feeling so rough I cancelled my cleaner for the month (she talks quite a lot and comes too early in the morning, it’s nice to have a clean house but sometimes standards have to slip due to fatigue). I must break jobs up, I must rest, I must do a little at a time! I must ask my lovely husband (his official title) to do things instead of trying to do them myself. It takes me 3 times as long as an able bodied person to do anything anyway. I also need to try to walk just a little bit, not going at it full tilt, just stagger a few metres a couple of times each day and use the exercise mode on the FES.
But at least I am starting to feel a bit better. And the fact that symptoms have partially remitted does mean that clearly my MS is still relapsing remitting, in spite of the progressive disability. So my aim for the New Year is (hopefully my lymphocytes will recover soon) to get back on a DMD. Now all I’ve got to do is find one that I haven’t already tried and / or am able to take. Admittedly it’s not a very long list!
Sue