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You know you're starting to feel better when ...

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

Haha,

I remember vividly after my first (only?) BIG relapse (the one that led to my diagnosis) feeling overjoyed that I could tell the carpet was wet. No - not because I’d peed myself - I’d just spilt some water - but realised I was standing on it, barefoot, and could feel it. That was such a novel experience, after weeks or months of accepting my feet just couldn’t feel anything, it was little short of miraculous.

Good job I live on my own, because standing in the middle of the room, with a big stupid grin spreading over your face, and proudly proclaiming: “This carpet is wet - and I know it!” would probably cause a few raised eyebrows, to say the least.

Oddly, after the complete numbness, I had a period of the opposite extreme. For example, if I used an aerosol spray (deo) on my feet, I had the weirdest sensation that I could feel every individual particle land on my skin. I don’t know if it was something to do with my brain trying to “turn up the volume” all the time my feet couldn’t feel, so when the feeling returned, it was set much too intense. Never quite worked out how damage could make you feel MORE.

Still, glad you’re feeling better, Sue!

Tina

x

2 Likes

There’s nothing like that moment when you know for sure that you’ve turned the corner. I am so glad that you are starting to feel better.

Here’s to fair days ahead!

Alison

sue

yippee!

so glad for you!

ellie x

Tina, one of the few benefits of this condition is to be able to smile & grin over the smallest good bits that we took for granted pre MS

Have a great smiley Christmas

Mick

1 Like

Thanks Mick,

Yeah, I must admit, pre-diagnosis, I’d never imagined being grateful I could tell I had wet feet! Or thinking myself “lucky” I can still walk, come to that.

Tina

Damn and blast MS to hell and back.

Today I can’t walk. Today I can’t stand for long enough to pull up my own knickers and it took about 6 goes to do it with help.

I thought I was doing well, managing the fatigue levels, not doing too much. Think it was one 5 metre walk too many (3 instead of 2)!

Bug*er it.

Sue

sorry that you are having such a rough time sue

you know, as do i, that you have the perseverance and you will get through it.

good luck and god bless to you

and ms can bug*er off!

carole xx