I had a relapse in November and now, five months later I am not feeling any better. I have been off work, have awful trouble walking, and I have trouble climbing into my car.
I recently bought a rollator to help me walking but, because it has changes my gait and posture, I have injured my shoulder and arm. The pain in my arm is constant and painkillers aren’t touching it. This affects everything I do and I can’t exercise because it hurts too much. I have trouble sleeping as the pain keeps me awake.
I just feel like I am on a downward spiral - I am just existing. Because I can’t exercise I can’t see any way back.
I have a wonderful partner, she is an absolute angel and looks after me entirely, and I feel a bit guilty about sounding so bloody negative.
Has anyone any golden bits of advice on how I can make any pogress?
Hiya
Getting back? Why would u want to do that? Life is constantly changing so go with it and learn to cope with today.
Please don’t think me flippant-far from it! Please read some of my other replies to understand why I say such a thing!
PS hello the regulars! Have had a time time since Xmas!
Ellie
2 Likes
Thanks. That’s just the help I need.
Hi, I wonder if getting a physio in might help. They may be able to show you ways to move, so as not to be in so much pain. Plus they may give you some exercises to help mend the damage…worth a try.
Good to know you have someone to look after you so well.
pollx
2 Likes
Hi Ellie, haven`t seen much of you recently.
What`s been happening hun?
pollz
Hello Bostick
Getting advise from a physio is an excellent idea. What quite often happens (to me at least) is that when using a rollator, because my legs are rubbish, it’s easy to lean quite heavily and this is what does the damage to your arms and shoulders. So you need to know how you can improve your posture when using a rollator.
If you’re having trouble sleeping, try laying on your back, but with a softer pillow than you need when you lay on your side. (This obviously assumes you don’t snore badly when laying on your back. Even wonderful partners become aggrieved when they have to sleep with a wildebeest!).
Rest assured, relapses can take what seems like forever to get improvement, but even 6 or 8 months later, you may wake up one morning and realise that you feel a little bit better than you did a month ago.
Sue
2 Likes
Bostick,
The comments above look good to me. A physio should be able to give some good advice. The secondary issues & pains due to defensive responses of the body to primary symptoms is a big deal. I had significant pain in my shoulder due to my use of a rollator, my physio watched me use it and the suggested adjustments to handle position and how I use it, the discomfort and pain have been reduced. If you can not move limbs properly for exercise it can be possible to get qualified and experienced support. I use a person who offers shiatsu (whilst I dont go along with a lot of the “energy” ) stuff she really does know about muscles and anatomy , so can move my limbs the way they were designed to be moved which I find helpful.
I like the idea of “getting back to” but I employ the notion of making the most of what I have. SOMETIMES we need to note the shifting goalposts and work with the NEW “normal”
Good luck
4 Likes
Thank you for taking the time to give such a full reply Mogace. I have a physio booked for next week.
1 Like
Hi again.
Let us know if it helps…hope so.
luv Pollx
1 Like
I have one booked for Friday, she is visiting my house.
it just seems so hopeless though, I am just stuck in my chair, rotting.
I would never consider suicide, so don’t worry about that, but this is so depressing. I can’t even do the simplest of things.
thank you all. x
Hello again.
I am concerned that you consider yourself to be rotting…I think your partner would be very upset to learn that. What can be done to help?
Social services have lists of community centres to go to, with transport provided. It really does sound like you need to take yourself out of this downward spiral hun.
And what about carers, to take you out?
There`s gotta be something…
pollx
1 Like
My partner does take me out - she is as good as gold. Before I was diagnosed in 2011 I was very active: walked everywhere and did things very fast, but the decline has been so fast.
Going out though is a really big deal for me. My feet constantly feel like I have been stood in the snow and my arm and back are so painful. I take eight painkillers a day (zapain 30 mg) but they only relieve the pain for two hours between doses. The other four hours are unbearable,
I agree with Poll, you need to break the cyclical thought process. When I get into a mental rut, I think “what would I say to a close friend” I then have a conversation with myself, (it might sound barking but there are enough facets to my personality so that the fragile feeble wall flower can get to chat with the dynamic mentor when necessary) If I can not get out physically I can zoom about inside my head/imagination , there are enough serious global issues for me to debate with myself so that I stop concentrating on all of my own crappy stuff. The other thing that I do is come here and I realise that I am not the only one being bullied by this condition.
Fingers crossed that your physio helps, I saw mine yesterday who fixed some stuff I didn’t even know was broken!!!
All the best
Mick
2 Likes
… stop it… you will have believing my own hype,
actually I need to get back to my snorkelling in the Maldives, or was it skiing in the Rockies… no I was actually lapping the Isle of Man ahead of Joey Dunlop.
Thank goodness for a ridiculously childish imagination.
Hope all good with you.
Mick
1 Like
where would i be without an imagination?
I imagine it would somewhere i dont like!
pollx
2 Likes