Thank you all for your replies on the other persons post.
I am the spouse of a crps patient. CRPS is complex regional pain syndrome aka RSD. She was injured in 2006 at work and its been downhill ever since. We have been together since 1996 and this is taking a toll on our relationship, (whats left of it).
Dealing with a person who is in pain 24/7 is not easy. I know its not easy for the person in pain either. But you add in the narcotics (takes as prescribed, not over taking), depression, memory loss, the list goes on and you both live in hell.
In the beginning she was a fighter and swore she would beat this burning beast called crps, but as time wore her down she has slowly given up on life. Im sure anyone in that kind of pain will eventually give into the pain to some extent if not fully. With each issue or roadblock we came across I would always research what to do next or how to this or that when fighting workers comp and then social security disability. She may not have got what she should have on her wc claim settlement but she got one. It took two years to get her disability, but she got it.
Nows it fighting the doctors because no one really knows a lot about
this irretrackable pain and ones that do know of it dont think it spreads or that its as bad as they say etc etc.
I take time off for every appointment to take her as its hard for her to drive with her legs being effected the most by this. I help her explain all new issues, I ask questions for her, I have been her voice thru out this whole process. BUT........ its never good enough, or I dont understand, or dont care, or my voice while speaking is harsh or mean, I put others before her and the list goes on and on.
She moved out of our room about
3 years ago, said it was because she had a cold and didnt want to disturb me. well.... she never came back. So I dealt with it, didnt say much except it upset me because sleeping together was important to me.... (no sex since the injury 2006). Got her a manual wheelchair and an adjustable bed for her room. Moved everything around so she could see her tv from her bed, access her computer from her bed. Bought a small fridge for her room so she didnt have to go to the kitchen when she was having a bad day. But... I dont understand and dont care she says.
I work for a wheelchair company so when it was time for a power wheelchair, when it spread to her arms... I got her a power wheelchair. And on top of that she got a better wheelchair then the insurance would typically pay for because I work there so she got the top of the line Permobil. but I dont understand and dont care she says.
She has crps in her throat. Which makes eating difficult. She mostly eats soft foods, no meat and limited breads because she cant swallow it. so she lost a lot of weight. So more doctors, more tests, studies, blood work etc etc, time off work to get her there. but... ya I dont understand yadda yadda yadda!!!
These last 6 months or so she has had a lot of migraines and stomach issues, vomiting etc. so I do what I do and research this, is it the crps is it something else etc. Well shes had issues with malnutrition and dehydration because of the throat/swallowing issues and a lot of her symptoms are caused by these. But she denies it, says its just the crps and I dont understand. I know the symptoms are some of the crps but when you add this to the table you have exasperated the issue so its not just the crps. But cant tell her that.... Funny how she can drink all the coffee she can make but cant drink water... funny how she can eat when shes having a good day but cant other days.... I maybe wrong, but if you can eat soft food, drink coffee, then you shouldnt be malnourished (shes not under weight.. yet, just lack of proper nutrients) and dehydrated. To me she is doing it to herself. Cant force her, cause I get chewed at for trying to feed her dinner when she says, I already ate this morning...... ahhh 8 hrs ago..... hello... need to eat more then that! Ask her to drink more water, even bought a the water cooler with 5 gal jugs with delivery cause she hates the tap water.... I have coffee, thats got water in it. ahhhhh but caffeine dehydrates you... what ever.
So I get mad, I tell her she needs to do xyz and this is why this is happening.... she starts in with the "if you only understood what Im going thru". I finally said if I hear that one more time, Im done.
Now that shes feeling better today, she wanted to talk and she asked me why cant I talk to her more nicely. She says I never talk to her nicely, Im always growling at her..... Funny how I do and do and do more, yet Im the bad guy. I told her, that I was angry, so no right now I can not, so she ended the conversation.
I am all she has, she has no family, no friends and yet Im suppost to take this crap and act like its okay? Half of the time she denies saying the hurtful stuff she said and she only remembers the times when Im stressed and mad. I just need a break or a new life! I hate coming home from work, I hate talking to her for fear of saying something wrong cause she doesnt remember when I say something good obviously. I just cant take it anymore!!!!!
Im going out of town in a couple of weeks and my daughter will be her with her.... My poor daughter is gonna catch hell from her, she always treats her like dirt when Im not around then denies ever being mean... only my daughter was that way she would tell me... uurrgghhhh!!!!!!!!
I really feel sorry for other spouses, partners, significant others who deal with this too... come join my venting party!!!
Post Edited (CRPSspouse) : 4/14/2013 7:35:10 PM (GMT-6)