How do people deal with pain

@enbyzzlingplatypus

This sounds absolutely awful to have to deal with. My sympathies go out to you. It sounds like your pain is controlling your life and causing a lot of anxiety. That in turn can make the pain worse and can make you feel even worse just overall. You should try to relish the pain free moments you have. Don't let the fear of the pain control you. I understand it must be difficult. Pain is a horrible sensation and having it so frequently certainly does take its toll. But the important thing is to not let it rule your life. You shouldn't have to live in fear of it.

@enbyzzlingplatypus For some people they go with Radical Acceptance and gratitude - accept that the bad pain days will come without actually dreading them and be grateful when pain isn't so bad.

I am not one of those people. or definitely not to that level. I go with what I'm feeling. When I feel grateful, yes I do embrace that. When I'm not feeling it though I do not force those thoughts as I find that to just make things worse. When symptoms are more tolerable I do try to do things so I'm not just sitting around dreading the next flare. If I'm in a negative mood though I might do something like go for a walk while having my pity party thoughts - and then try to move onto something when ready so I don't just get into a spiral. I also enjoy things when feeling that. When symptoms are worse I try to have enjoyable activities and distracts that work with those. Having a bath, listening to an audiobook, watching netflix.

If you have access to it, also make use of therapy. I think some dread when dealing with dynamic symptoms is normal. Therapy might be able to help minimize or at least cope better with that anxiety so it doesn't take over so much.

@AffyAvoAudiobooks are really helpful, it means I can still knit and listen so I keep all parts of my brain occipied.

Psychical therapy got me out of bed because i couldn't walk and i felt hopeless now I'm able to kinda walk around. The more i do it and strengthen those muscles the easier it gets to move around. If you can't get up out of bed do bed yoga. Move your body carefully and be gentle with yourself

Have you spoken to your GP about being referred for pain management? It’s something that isn’t always offered but is usually available, at least in my country. My sympathies go out to you because you put into words the most awful feeling. Sending you love. X