Struggling to keep it together until Thursday. ..
 

I did pretty well today, considering I was told, officially, my Crps was not only back and flaring but spreading. But, I'm in such pain right now, and feeling really down. I'm usually very good at keeping my spirits up, and have been doing everything I can to live my life to the fullest I'm able to, with my new life. I'm a very optimistic and upbeat person.... although some of my posts when I first joined were a little frantic from the new stress and pain of CRPS.
I do apologize, in advance, for any craziness in this post...
I'm pretty sacred right now. Spreading to my legs... I'm really worried about being able to get a job or being totally or partially disabled. How am I'm going to be able to provide for my family? Or live close to the life I'd finally been able to live again.
Now my fiancé isn't being very supportive at all with the spread. He is a trucker and is on the road 5-6 days out of the week. I was let go from my last job in the end of July do i do all the house work. I really try to get everything I can done, so he doesn't come home to a messy unlivable house. Normally I have NO objections to doing that, it's fair as I'm not making any money. It's even harder right now with the new flare/spread than it was before. I worked so hard today, cleaning the house!! I had my stepson help with a few things like vacuuming, and unloading dishwasher(very !painfully! I loaded this morning and loaded again after dinner), I did all of the following myself!! 4 loads of laundry (the wash/dryer is down a full flight of stairs in the basement), folded/put away all but my daughters clothes (her chore), this alone took around 5 hours! I cleaned up the living/bathroom/kitchen 2 hours more, as walking is so painful right now I can only limp slowly! Went to my doctors appt. for 1 hour there & back, but my legs hurt like crazy as driving !!hurts badly!! Then came home, cooked dinner "spaghetti w/ meat sauce, garlic bread, and green beans." & cleaned up after, put away the leftovers, hand washing the pots & pans. And cleaned the stove and counters....My legs were trembling from pain by point. I did it as determined to take care of my family...
I also put myself to the limits as he works so hard!
Then as he's going to bed, he was yelling about how "cotton balls in the bathroom weren't refilled...."
I couldn't believe it... after everything I did?
So we got into an argument about it. I was so angry/hurt after working like I did, while in such pain! He only kept yelling saying that "things need to be put where they go"
He actually told me I need to just learn to "deal with it", to "stop moaning and groaning to him about this and that because he's tired of hearing about it." And that all I need to get better is to "decide to fight" this and not "sit around " all day & not be so Sedentary"
He has even talked to my doctors! So I don't know what to do to make him understand it's not a "ignore it" type of pain!!
Since I hadn't heard a thank you for anything else I did..? I (finally) told him I was screaming from pain and still clean & cook so he doesn't have to! I feel like no matter what I do it's never good enough!

It just hurts so much..for him to say those things... I tried asking him if he thinks I want to be like this? I do fight every single day to be as active as I can! To do as much for my family as I can! But that no matter what I do it's never enough! That yes!there are many things that I CAN'T do!! But I DO fight every day to do all the things I have been doing!! Like waiting on You!
...he still seems to think that this is a pain you can "ignore" or "deal with" or "suck it up" or "get over" like I've Flippin stubbed my toe for Christ's Sake!!
I'm so tired of trying to help or make him understand. ... I really don't want to be like this..
I was working a full time job but for a few months for the entire time I've had Crps!! I told him how I feel "no Empathy or support from him anymore"....
he said he was "tired of hearing about it"...((in reality...I don't talk to him about it much anymore, as he seems to not care))
he actually said "he's just sick of hearing about it, and thinks I just need to ignore it and move on with my life"
Like I wouldn't if I could???!!
I just feel like that if he truly loved me wouldn't he be supporting me? Trying to ease my pain, in any way? I would!
I, wait on him hand and foot, have a warm, homemade dinner waiting for him as soon (or soon after) he's home,bring it to him with a drink, serve him seconds, and clean it all up as well?? With the pain I'm in...
It wasn't as hard to do when (I think) my Crps was under control. But now...
I am so sick of it, how could I let him treat me like this? ..and then I think..
Who else would want me? I can barely take care of myself without having some kind of massive pain flare that can land them in a wheelchair for months. ....I can't hold a steady job, due to "sick days" causing "disturbances in the workplace sufficient to breach a reasonable code of conduct expected by the employer" (the actual reason I was denied unemployment btw)
God. ..I am just so sick of feeling so dam useless....to everyone. ...
:Sob::Sob:

I know that this is a long post. ...and appreciate anyone who takes the time to read/care... if you don't read it all I understand, it's a long one.



:Bawling::Bawling::Bawling:

I read it all and i think women are just more patient and understanding than men. I would never have stayed with my girflriend and pu up with everythibg she's put up with.
That being said, she is human and says hurtful things someties. And being sick, you and i both feel like who else would want us?
you dont deserve to be talked to that way and neither do i.
It's scary knowing i can't really leave because i couldn't affford to take care of myself.
But wevstill have to call them out on it when they say somethig realy hurtful. I wish she could feel my pain for a minute and then she would understand more. i'm sure you feel the same way.

Mark,
I know. He says he "knows my pain" because he's had carpal tunnel surgery on both wrists... which is a very painful nerve syndrome.... however based on the McGill Pain Scale..it's like a slight fracture compared to slowly cutting off a finger with an electrified safety pin..... and seriously I would never lessen his pain, and when he's hurt, do everything I can to help....
What hurts the most? He never..never apologizes anymore...
The most hurtful thing he's said was
"I wish I had the 'old Emma' back, I don't like you this way"
I know I'll be okay in a day or two but....I hate the way I feel now....
And sometimes I feel like he's just waiting for my lawsuit to come in...or at least that's why he's still with me

Hey Bird,
Tell him from a former OTR truck driver to another, lighten up!
I used to drive from NC to various locations in NYC twice a week. Then got into a bad crash and after years of this monster I'm in a wheelchair due to full body CRPS along with complications of my cerebellum shrinking. I can see both sides of this, and if he thinks it over, he's got the better end.
All he's got to do is to continue doing what he chooses to do while you are learning to deal with life in a different way. It may seem that's it all about you at times because it is.
He doesn't hurt when he moves. He doesn't look at life as a physical struggle.
My wife, who is also my care giver, reads some of these posts about how families get stressed out and tells me she can understand both sides but is happy that we have been able to balance things.
Excuse me for saying this but if I were you I'd tell him "This ain't no truck stop, get it yourself "... lol
(I hope he reads this...)
Be well...

Unfortunately he probably won't. He isn't really involved in my care or anything to do with my condition. He has chosen not to be the entire time. I had to nearly beg him to come to my the only appt he did. . Bur thanks you made me smile. ....because that's pretty much what I said. ..without the trucker part

he doesn't help you with your condition? what about when it acts up and you need him?
I can tell you some truly horrifying stories of what my girlfriend has had to do this past seven years. Let's just say it was much less than pleasant.
He should be helping you with this sickness. The "old us" is gone. It sucks but it is what it is. He needs to deal with it.
You deserve to be treated right. God all these illnesses suck. They don't need to be made worse by getting chastised for being sick.

Songbird:

What a tough go. I'm really sorry that you're going through this. As you can already see with the responses here - You're not alone:hug:

I hope you don't mind me chipping in with somewhat of a different perspective...

Especially when things are rough, our first instinct is often to blame and find fault in others (and in ourselves). This literally adds fuel to the fire, and makes it even harder to find common ground.

My advice is to consider the fact that your fiance is also coping with the fear of his own powerlessness to "fix" you and the situation. The anger and seflishness he is projecting is a result of his own fear, even though it seems directed 100% at blaming you.

Your fiance cannot truly understand your pain without going through it himself. You cannot change him. You can only stand in your truth. This means standing up for yourself (which you are doing.) It could also mean a recognition of his own ignorance and a softening in your heart towards him because he simply doesn't know any better.

At the same time, don't expect him to have the same understanding of you. People only change on their own terms. When they are ready to. I am not saying to be a doormat for the guy. Just not to go beyond your limits at the expense of your own sense of value. Find solace in your own understanding.

Regardless of the fear he projects onto you --- Know that you are an amazing person for your selfless acts of love through excruciating pain. And that good deeds are rarely rewarded right away.:hug:

thank you :)
 

It's nice to hear it, outside of my own thoughts! I really am not exaggerating a single thing he's said. Now I do want to point out that I don't just sit quietly with nothing to say when he gets like this. ...that could be part of the problem! Lol.
It just feels super one sided. I mean I've just gotten some terrible, life-altering news. And he really didn't have anything to say to me about it, other than make sure you tell the lawyer....sigh
I think you're right. He even said quite a few times "if you hadn't gone to the E.R. in the first place this never would have happened. Even though my doctors office told me to go, he believes it was my choice to go, and therefore I am a fault...it's so frustrating and hurtful. Like except for the money I'll eventually get, it's not a "big deal" ha! When I'm looking at being at least partially disabled!!lol good grief...at least I know how to find humor and blessings in almost every single I have thrown at me. I know it was a post. With kind of depressing tones.

That doesn't mean I'm going to give up. promise I will get through this and I will keep fighting for every bit of freedom and mobility I have...
It's just a little hard to see the Sun, when you're feeling nothing but the rain...

Men vs women
 

Goodness I am so sorry for all that you are going through....I must say though reading your post I can very much relate to the lack of support and empathy. My boyfriend is uninvolved in my situation, he works, I'm currently on a leave, I do EVERYTHING around the house and he barely notices or even asks how I am. When I point it out he says "well I figured it hasn't changed".....I think it'd just how differently we think. Sometimes for me, talking about my pain and situation helps me through it where as he sees it as dwelling on it.

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.