I’d never heard of CRPS (or CRaPS as I call it) until about 18 months ago. A workmate was telling me about a friend of hers who was in the US getting treatment for this condition she had where she was living in chronic pain after an injury. She was telling me about all these symptoms she had & it was exactly what my partner was going through. I got in touch with this girl & from there another lady in WA & that’s where our CRaPS journey began.
Back story to this is that my partner was injured at work over 3 years ago now, before we met. Original diagnosis was soft tissue shoulder injury that was later diagnosed as a frozen shoulder. He had a year of various treatments for this, none of which helped. The whole time he was telling the work cover doctors that he was getting worse, but they refused to listen.
It was at about 10 months post injury that we met. By that time he had very limited use of his left arm, was starting to walk with a limp, having disrupted sleep patterns & have horrible random pain throughout his body. None of the doctors would listen. He got an appointment to see a pain specialist but was unable to get to the appointment & was struck off their list.
The next couple of years have been filled with work cover making life as difficult as possible (that’s a whole other issue, common to many CRaPS sufferers), the pain getting much worse until his whole body is now affected & movement limited to the point where he’s lost almost full use of the originally injured arm & probably 90% of his right arm as well. He can’t work & lost his licence due to the loss of use of his arms, so he can’t go anywhere unless he has someone to drive him or feels ok enough to take public transport (which isn’t often). Along with all of that is an inability to sleep due to the pain & serious mental health issues to the point of wanting to commit suicide.
After I contacted the two ladies mentioned in the first part of this story, I pushed for a referral, through his GP to work cover, to a pain clinic which we got. They tried various meds, none of which worked, & through them we finally got the official diagnosis. Not that that has made the work cover issues any easier but that’s a whole different issue for another time.
I’ve seen him go from someone who was able to function reasonably well to someone who can barely get through a day. He is barely able to sleep at times due to pain & nightmares. The pain is a constant; the only thing that varies is the amount & it’s never lower than a 5/10. A constant battle with depression & PTSD exhaust him completely. There’s blocks of days where it all gets too much & he shuts down completely & can barely talk to me. That’s the worst because I know he’s suffering but there’s absolutely not one thing I can do except just be there if he needs to talk or cry.
I call him at 5pm every day when I leave work. Sometimes I’ve been terrified to come home in case I find him dead, it’s been that bad. I often come home to find the house completely in darkness because he can’t deal with the curtains being open. The social anxiety he now suffers is crippling.
I’ve learnt that I need to be able to read between the lines because he can’t explain how he’s feeling most of the time. I’ve learnt that I need to be supportive of his decisions even if I don’t agree with them; I’m not the one with CRaPS, he is. The main thing I’ve learnt as the partner of a CRaPS sufferer is that we need to communicate honestly & openly about EVERYTHING.
My feelings do matter as well. We’re a team, a partnership, so the basics need to be the same as any “normal” couple. I need to be able to tell him how things are going for me as much as he needs to tell me how things are for him & we work through things together. It’s really hard work some days & other days are easier.
The hardest thing as a partner, has been seeing the progression & the deterioration in his body & mind due to CRaPS. It’s actually been horrific to see & deal with & I’ve needed counselling as well. I think if we had met when he was a normal, healthy man it would have been a lot harder to deal with this. I don’t know him any differently so maybe that’s made it easier.
We have no idea what will happen in the future with no real treatments available here. Work cover will play a big part as there are payouts to come & they have a history of taking their time & not paying properly. I’m hoping that we can access the Calmere therapy that’s just been approved in Australia for starters to see if it helps. It’s hard to remain hopeful as what helps one person has no effect on another. I guess my biggest wish would be to get over to the US to be able to access some of the treatments & trials they have on offer. Most of the time though having the funds to do that seems impossible.
All I can do is take each day as it comes. As heartbreaking as it is to see the person I love reduced to a shell, I have to carry on & be the strong one because giving up isn’t an option. CRaPS isn’t going to break me or us; where there’s life there’s hope.