geez, my girlfriend does way too much while I cry day and night about being sick. i will start to help and be more appreciative

I am so sorry that you are dealing with this type of situation. I almost hate chiming in on this sort of thing because I have been incredibly lucky with my boyfriend. He doesn't dote on me...doesn't wait on me hand and foot...doesn't treat me like I am broken...but he supports me in every way that he can and is always there for me when I need him even if I haven't asked for the help. So I can't give you any real advice on how to deal with the situation based on my own experience because I have been lucky,

BUT...if it was me...I would stop spending so much time and energy on doing things for HIM and put the focus on myself and getting better. When I went through my bad period of spread...when I was in the wheelchair unable to stand or walk at all...I spent my days focused 100% on doing the things that would get me functioning again. That included physical therapy, physical therapy exercises, learning my triggers, finding treatments that helped me, learning HOW to do things all over again (because even though I can accomplish many of the same things I have to do them differently than I used to), focusing on my mental health...all with the goal of taking back my life from this monster. THAT is what I would be spending my time and energy on and if my boyfriend had any smart *** comments about the house not being clean or dinner not being ready I would explain that I am trying to take my life back and to do that I need to focus on getting better so that is what I am doing.

The problem I see with pushing yourself to do all these things for HIM is that you are not doing yourself any favors. Until you get the CRPS under control...you won't be able to be your old self. The pain is just all consuming and your need to start taking control of your condition instead of it controlling you (as much as anyone can anyway). But it takes a lot of time, effort, and focus for that to happen...it's a full time job all by itself. I spent all my time when I was off work on those things I mentioned...and a lot of that time was spent testing my limits, finding that balance between moving and resting, finding the exact treatment protocols that helped me, seeing what I could do to minimize the pain BEFORE I did certain activities, etc. You do have to keep moving and pushing...but it should be with a PURPOSE...and THAT is what you need to outline for your fiancé right now.

It's not about "complaining" about how much you hurt...it's about taking control of your condition as much as you can and working towards a GOAL of taking your life back. He needs to understand that if he "wants the old Emma back" then that's going to take a lot of work on your end and support of his end to get you there.

Don't get me wrong...life will never be like it was before. I've come to accept that...but it doesn't change who I am...and it's the PERSON your fiancé loves...not the things you could do.

I'm sorry if this comes across wrong...as I said before I consider myself VERY lucky to have my boyfriend in my life and with how great he has been through all of this. The best thing he has done for me is not treating me like I am broken...no one wants to feel that way and it actually (for me) would make it harder to focus on doing what needs to be done to take my life back.

I hope you guys are able to work it out and sort through these things. Just continue to be honest with him about what you need...nothing is made better by trying to continue on as normal when things are NOT normal. He cannot possibly understand what you are going though...unless you feel this pain day in and day out there's no way you could...but that doesn't mean he can't be supportive. It's on you though to make sure you make it clear what you need from him...and at that point you will find out if he can or can't be what you need right now...and then you guys can go from there. But he's not psychic...and no matter how obvious we may think we make things...nothing replaces just spelling out EXACTLY what we need/want. Sometimes the hardest part is figuring out what that is ourselves so that we CAN communicate it...both with our loved ones and with our doctors.

And you thought your post was long...lol. All of that just to say that my thoughts are with you and I know you can make it through this. Hugs.

Sorry this has to be so quick, but no time today ...

I didn't see the McGill pain index mentioned yet, but for my daughter, that was very helpful. Try printing it out from a link somewhere where it says RSD/CRPS instead of causalgia (the old name) and showing it to him - it shows RSD as the worst pain, worse than amputation. It's also easier and quicker to look at a chart than to read an article.

The chart from American RSDHope is a good one - try googling American RSDHope and McGill pain index. I can't remember the link policy here, or I would give you the link.

So sorry to hear of your difficulties :( Prayers and gentle hugs! :grouphug:

I agree with catra, you need to stop waiting on him so much and focusing more on yourself. You are definitely not helping yourself at all, you are aggrivating your physical and emotional self even more. He needs to realize the severity of your condition, pain and limitations and if he doesn't, then maybe you would be better off without him. I am sorry if this is harsh sounding, but you should not be treated so poorly. You DESERVE to be treated with empathy and compassion.

I know I am very fortunate to have a great husband who is very supportive. He is not perfect and has said hurtful things, but I always call him out on it. He apologizes, not realizing how much what he said has hurt my feelings, etc. He is always there for me. I stopped working at the end of Dec 2012 and am receiving LTD and SSDI. Just because I am home doesn't mean I can keep the house and cook. I do what I can, which is not much and he gets it (I have a lot going on in addtion to RSD/CRPS). He works an hour from home, works his butt off keeping the outside up, drives me everywhere because I cannot drive AND he cleans the house! Did I mention that he was born with cerebral palsy and cannot use his right arm/hand? He tells me how much he loves me and I ask him why...he tells me that no one would treat him as good as I do. Seriously!

With all my health issues, I am loved by a great guy. If this guy doesn't love you enough to support you, then move on. There are good guys out there that would love you no matter what!!

I really am sorry that you are dealing with all of this on top of spread and such extreme pain.
Nanc
:hug:

Great suggestion! I have used the McGill Pain Index MANY times, it is very helpful. My husband says that it really gives a good picture of the level of pain we deal with.

Here is a link to one, but it has causalgia. I personally like this one the best because of the explanation and it shows more conditions on it that people can relate to. http://tuum-est.com/MEDICALJUSTICE/McGill.html

Thank you all!
 

Oh believe me, I have shown him the McGill Pain Scale and all sorts of things about Crps. As I said before I was able to get him to go to one of my appointments and even talk with my doctor and what I was going through. Nothing seemed to help.
I had been able to learn what my new limitations/triggers/abilities were. It's just with the new flare and ķy65spreading I'm sooooooooooo frustrated because I'm going to have to do that all over again!!
I have my appointment in a few hours and am hoping we'll find something else to do or try. Send me lots of bright healing thoughts!
I was able to !!!finally! !!! Actually talk to my fiancé. And he has been a lot better than he was. Granted since we talked about everything he's been on a delivery run all week but I hope it's a step in the right direction.
I would still like an apology, but we'll see how it goes.