Hi all, first post here so may end up as a ramble - sorry in advance!
I’m the only carer for my partner who has had MS now for about 25 years (since she was mid 20’s). Initially RR but now moved into 2ndP. The past few years she’s gone from being able to walk with a stick to now not being able to stand at all. This means I have to dress her, transfer her from chair to bed, toilet, wheelchair etc. She has constant spasms, has started to choke when she eats, has a supra-pubic catheter following months of bladder issues.
Thankfully her mind is still as sharp as a pin!
We used to have such an active, fun life but now we’re mostly house bound. Most of our friends live 2 hours plus away, although they will come to help any weekend we ask them. I used to work but had to give this up as I can’t leave her alone at home for more than an hour. Thankfully we have some savings to live on at the moment, although the downside of this is the council have zero interest in helping us.
MS Nurse, physios, local GP, district nurses though are thankfully superb.
What scares us though is where her illness is going. She has gone downhill so fast so quickly. Just 18 months ago I was working away from home and staying away nights, now I’m reluctant to go to the local shops as I’m scared to leave her alone too long. Everything you read online says MS doesn’t kill, yet we are so scared about the drastic drop in health in such a small amount of time that we can’t help but have very dark days.
What should we expect? What can we do? Anything we should be looking out for or be wary of?
Today is a good day for us. Some days are very bad. Thanks for listening.