Quote:
Originally Posted by heatherg23
I have lots of internal scar tissue from SCS surgery. The pain is horrible. Last Sunday I had to sit for 2 hours because my aunt and brother came up. That started the uncontrollable pain. It's been 4 days and it hasn't settled down which is normal. And thanks to Thanksgiving Day I just got done sitting for maybe 4 hours and the pain is even worse. That's when she said "Just take a pill". It's not magic! It's not going to work if I was already in severe pain. It didn't do a thing.
Heather
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Hi again Heather
I just wanted to add that one thing my pain doc and OT said to me a while ago is that you have to adapt your environment to limit your pain, both current and future. This means simple things like moving a chair into a better position, or excusing yourself and moving about to avoid stiffening up etc. My OT said politeness and social expectations are just the worst things for us, because
we don't want to make a fuss....so we force ourselves to suffer through a situation we know will cause problems.
She was so right. I've learnt to help myself a lot by just being realistic about what I can do, and making it clear to other folk what I can and can't do. So if people come to visit and they just sit and chat for ages, after a while I will just say "I'm sorry, but I need to move around a bit and stretch my back out. Don't feel you have to go, I can still chat!". They might raise their eyebrows the first time, but it's surprising how quickly people accept it and learn that it's just who you are now. I do the same thing in doctor's rooms, shops or other people's houses - and as long as I smile, briefly explain that I need to sit down etc because I have a nerve disease affecting my leg (my stock explanation lol), and don't make a fuss, most places and people have been lovely.
The other really important thing I was told is "who cares what other people think?! You're not hurting or insulting them, so just do what you need to do to look after your body." This has also helped a lot. I had to use a wheelchair for about 18 months, and I hated it at first, but once I stopped worrying so much about other folk's reactions, I found it so much easier (and I didn't get judged like I was dreading), and I'm sure pacing myself by using it and other things is what has got me back on my own feet again
Fear is what holds us back so much. Most people are fine with things as long as you are polite and explain briefly why you need to do something. Family might be a bit surprised, but they learn very fast!!
Hope this helps a bit. Don't suffer more than you have to - you have enough to deal with just getting from day to day
Bram.