Ready to give up / intro

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)

CRPSpouse, your post moved me quite a bit. I am currently separated from my spouse heading for divorce all because of my illness. This is going to be a long post. PLEASE hang in there with me through the beginning where it may sound harsh to you. Don't worry, I will be supporting you about half way down so stay with me!! I am the sick one. He knew when we got married my health was an issue, but at the time we didn't know what was really wrong with me and I didn't get diagnosed until 2003. After getting diagnosed I went back and got ALL my records and found proof they knew what I had in 1989 but never said a word. I was getting tests for a completely different reason and the biopsy clearly showed my condition.

Our lives drastically changed in 2001 when I could no longer work. From that point until 2005, my husband was right beside me, every appointment, test, procedure, hospitalization, etc. From 2001-2003, I was so sick, in and out of the hospitals, I woke up wishing I had not. I checked out of life. In 2005 I found some things out and we began to "live" again as we tried to save the marriage. My problem was I couldn't live in the well world anymore with my husband. Because I knew he wanted it so badly, I wasn't OK in my world as a sickee or however you want to say it. So what I struggled with and finally realized is that in order to have peace, I needed to accept my situation and my limitations. And by limitations, I mean somedays if I was able to brush my teeth, that was a good day.

The reason I gave you all the background(and I'll add some more in a minute) is so I can better explain the dynamics of what you guys MAY be going through. Only you know.

I believe when I accepted my disease and limits, to my husband it looked like I had given up. And believe me when I say we moved every mountain to see if there was an option from me. The most well known specialist on my disease in the US looked at my case for possible trials or experimental options and said with my complex issues he had nothing to offer me I tried numerous times to get enrolled in trials put on by the government and told I was to sick to participate. For me that was it. I had jumped through every hoop, tried experimental drugs, all different kinds of treatments. I had been sick in one way or another since I was 12 and I was tired. I finally accepted my situation.

To my husband, since I was no longer "fighting"(in a way that he could understand), or pushing, I had given up. That made him angry as he wanted a normal life. The other thing I would like to point out is when those of us are battling serious illnesses and pain, it takes every ounce of strength and focus we have. We survive sometimes minute to minute. No one and I mean NO ONE can understand what that is like and what it means unless they have gone through it themselves. As we no longer fit in the "normal" world, it's like we are our only advocates. In my case, because early on I had so many telling me I wasn't sick, that when I got diagnosed and was vindicated I went the other way. I can't be a normal person anymore so I will be the best sick person. I stood my ground. For those of us with pain, we have to because we will not get treatment if otherwise.

OK, if you have read this far, here is where the kudos come in for you!! Bless your heart for all you have done! You have hung in there like a champ where many men would have already run for the hills. I can tell you love her very much and I am sorry you are living this life as at times it can be very much a hellish no win situation.

What I didn't understand because I was so wrapped up in my own pain was what this was doing to my spouse. What I wouldn't give to have a chance to go back and do some things differently. The first is showing him gratitude. I am not someone who is comfortable with having others do for them. I was the one who helped out, not needed help. Agree with your wife(ideally on a good day) do have a discussion. Let her know you are feeling taken for granted and tell her what she could do to make you feel appreciated. Start small, and make it something she can realistically do. My biggest problem with my husband in that regard was he wanted me to show him by actions and I did it by words. Telling him I appreciated this or that. He never heard it, but he would have appreciated a back rub, intimacy, etc. But unfortunately things hard for me to do.

Because I took my vows seriously and I thought he did to, I never thought he would leave me. Today I would move hell and high water to make sure he felt appreciated for all he did. If I was talking to a bunch of PMers, I would tell them that even if it meant a day or 3 of extra pain, it's worth it if it helps your spouse feel appreciated. We get so used to protecting ourselves from experiencing more pain, that sometimes it comes at the expense of others. What I wouldn't give to have that fore-sight today.

The hardest strain on a marriage is when a spouse or child is chronically ill. We all have different ways of dealing with our pain. My husband and I were polar opposites. Communication, if both are willing to be completely honest, is a great tool. Schedule time for just the two of you. Even if it is just doing something small. I also got in the habit of when I didn't feel good saying oh let's just skip it. As he really didn't want to play another board game he never really minded. He wanted to get out in the world and do things. I get that, but I am unable. I tried to give him freedom to go off with the guys and have fun and recharge his batteries, but as the healthy guy, you have to be aware that your opportunity to meet physically healthy girls are huge.

With that said, GUY time is important. You need to vent, release frustration, socialize. But WITH GUYS. You are vulnerable. This is what happened with us. I wanted to be nice and let him have guy time never knowing it was time with both guys and gals and he met his current girlfriend. So continuing date night or date hour, whatever time you have is important. I also dropped the ball here.

She also needs friends. Whether real life or online. Knowing you are not alone and others are experiencing what you are can be life changing. She needs people other than you that she can share what she is going through. You've heard enough. Another mistake I made. I tried to quit talking about it but when it IS your life and you are no longer working or doing hobbies then that is what you talk about.

Sorry for the book, but as I said this was close to my heart because of what I am going through. If I can help one marriage go through the pitfalls I would be so blessed. Hindsite is 20/20 but with these groups we can shre stuff we've already been through. Feel free to ask anything and I so hope you guys can work it out. Your marriage IS worth it!

 

 

CRPSspouse, my heart goes out to you so very deeply. I'm 28 and had CRPS for 14 years now. It's been full body/sytemic for some five or six years now.

Speaking from a sufferer's point of view - I can't even begin to imagine what you go through. I look at my parents (who are essentially my carers) and often think that this disease, severe chronic pain in general come to that, can have as greater toll on our loved ones in some ways as it does on us ourselves. Well done to you for hanging in there this far, for making the efforts to research, to know the next steps.

As the other two have already mentioned, with ongoing chronic pain comes depression. With any chronic pain, it's just as important to pay good attention to your mental health as to your physical, because once that reactive depression sets in, life gets miserable for everyone. I know that I'm lucky to have my parents - more than lucky - but I've made life horrible for them at times, much in the same way as I think your partner is doing for you. Would she consider coming and chatting to us here?

Edit - I saw your question in your other message about coffee/soda vs water... I know you sound skeptical about your spouse refusing water in favour of the other drinks, but I have problems drinking water too.

My throat is not too bad, I have some odd sensations, but not too many swallowing problems as such... but I do have very bad gastroparesis - to the extent that I'm lucky to be here today. I can't drink more than a few sips of water without causing pain, bloating, even vomiting. However, I can drink a small cup of coffee or tea, I can sip a glass of cola - I actually drink diet cola with my doctor's blessing because it helps my nausea and helps prop up my heart rate and blood pressure, which are chronically low.

I actually wonder though - you said she's not underweight, but if she's starving - this can really upset your thought processes as much, if not more than depression can. It causes you to be forgetful, to be argumentative. I see from your other message that it's difficult asking her to see other health professionals, but I'd suggest a dietician if she's not seen one already.


Also - if you want to email me, please feel free. You can do that by clicking on the little envelope under my username. Happy to chat to her too, if she'll talk to me.

Try to hang in there, and as Trix said - remember to take care of YOU!

Best wishes,

Laura

I cried after reading this post today and then called my husband to tell him how much he means to me and a great big Thank You for all he does for me. don't get me wrong, we all have our issues, but you really put it back in the perspective of the spouse of the CP patient.

I too moved out of the bedroom for a long time.....that time has passed because it was destroying us in its own way. Now we are back in the same bed together with both f us making concessions for the betterment of our marriage. It was actually quite hard to adjust to each other's sleeping habits again, even though we had/have been married so long.

I hope you will both find each other again and work through this chronic pain nightmare soon!

Jim1969:

Yah Im a fixer type! She is on antidepressants but they are prescribed for pain not depression. I have scheduled an appt to see her primary care to discuss more in detail with her of what is going on. I have come to some conclusions myself but I need to know if its correct or not. Like I have said before, she malnutrition because she doesnt eat so, with that goes issues of low blood sugar (non diabetic type) and that to can cause memory loss, nasty outbursts, vomiting, and a more of the crazy stuff she does when she goes days without eating.

I actually do understand pain and how it can affect a person, from personal experience so its not that I dont understand the 24/7 pain, what I dont understand is the jekyll n hyde its become. If you have the tools avail to help you stay hydrated, nourished, comfortable to have more good days then bad why fight it? Why argue about everything that others are helping you with? It just wears on ya and you can fight the harsh words they speak to you with so although they are the ones in pain, they are not the only one suffering.

Spouse,

I have Cerebral Palsy, it's not CRPS, but I've always had it, will always have it, and it's been trying to destroy every aspect of my life the last handful of years. Physically, emotionally, spiritually...and every part of my life has been affected as a result.

I can't speak for everyone or for her but...as a person with chronic pain, and an incurable physical disorder...

I get to a point where I start to hate myself. I hate myself for all the things I wish I could do, the things I want to do, the things I used to be able to do, the things I didn't/forgot to do...and it becomes completely overwhelming.

I lose sight of the big picture. It's like tunnel vision. The only thing I can seem to focus on is how much it hurts, how tired I am, how much effort everything will take.

And that part of my mind is at war with the other part that gives a crap, wants a life, wants independence, the *normal* part of my brain that wants nothing to do with my sick body whatsoever and would ditch it if I could. Sometimes it literally feels like I have split personalities duking it out for living space in my head.

Food has become like an evil villian. All the medications I take, in combination with the pain have made eating an absolute misery even though logically I know I need to eat. When you're in so much pain that your stomach is churning, you have to force down every bite and then try (mostly in vain) to keep it from coming right back up. And then the meds just add to that. I even have antinausea meds but they only do so much when they help at all. After throwing up becomes the norm, nothing seems appetizing and instead of choosing what to eat based on how it will taste going down, you choose it because of how it will be coming up.

There's a lot she probably feels, thinks, etc that she doesn't mention to you because she doesn't want to add to what you already go through/do for her/put up with. It's hard to really ever truly understand why people do what they do...but it sounds like maybe shes given up, or a part of her has. When I get like that...what I really need is someone who refuses to give up on me. Someone who won't take my crap but at the same time has my back.

Sometimes my boyfriend is the ONLY thing standing between me and this deep dark black hole that threatens to suck me in and swallow me whole. Without him I don't think I could live this life because it's just TOO hard. I think everyone with chronic pain or chronic something has that one person whos saved their lives countless times without even knowing it- metaphorically speaking.

I can't imagine how hard your life or my BF's life is at times. Almost every night I wish and pray that my life were different- and most of the time it's HIM I have in mind. I wish I could do more, be more, be BETTER, stronger, more able...for him. Because I feel like he deserves so much more than I give him. I try...I really do...but I know I fall short more often than not and it kills me. I'm so thankful he's as strong as he is because if he wasn't...he wouldn't stay with me and I would be lost...so even though he'll never read this...

Thank you Cory...for everything you do, for the wonderful man you are, for sticking with me even when you'd rather not. For making the sacrifices you've made, and for making my life more worthwhile. I love you.

(I think your post is hitting home for a lot of us in some way...thank you for your post!)

CRPSspouse I want to welcome you to Healing Well Chronic Pain Forum, and I also want to Thank You for coming here and starting this thread. We do have some of the most caring and compassionate people that you would ever want to meet! Any where!  Your post really hit home, and I think to often those of us suffering with chronic pain forget about what it is like for the others that are close to us and help us and what they go through! Have you sat down with your mate and explained how you feel? Have you considered counseling, some one you can talk with and maybe help you to get through to your mate, and also help you relieve some of your stress from the situation. I mean lets face it, being her mate and the bread winner and her primary care giver and then also not being appreciated, and verbally abused, that has to be stressful for you! Actually it sounds like joint counseling would be the best, as I am sure your mate could also use it.

I do admire your loyalty to your partner, and you are always welcome here at this forum, there are many types of pain, and from your post you are suffering just as much pain as we are, just in a different way! I think you will find support and insight, here, and I am sure you will find that this is an excellent place to vent your frustrations, and you have many people that will lend you their ears and listen, and give what advice that they may have. I think we can learn from each other here, I know I have learned allot since I first came here!

Anyway I do hope that you stick around and become an active member of our forum, when your here your family!

Again I Welcome you!

White Beard

Hi again,

I hope you are still reading and are still with us! I know that it touched me again and gave me more strength today to read more of this thread. I also appreciate your openness about your lifestyle. It is very pleasant to see someone open about difficult issues.... though I do agree that this is not a place to discuss the issue in depth. You are helping us too!

Thank you for that!

Wow CRPSspouse... I know how Pain, especially Chronic Pain takes a toll on relationships of any kind. As a CP sufferer among other problems, I want to say that I think you are Fantastic... That is first and foremost. I would do just about ANYTHING to have a man that loves me enough to put his needs aside to take care of mine. I haven't been involved with a man for about 4 years now...and it was over 7 before that. It's just not worth the trouble to me. I know that I am very obstinate at times... especially when my pain is really bad.
I am lucky I guess, as I am not in a wheelchair and can walk on my own. I only need help for carrying heavy things, reaching up high or down low, bending, squatting and such... I have Diabetes and other health issues but the Chronic Pain is the worst... I have a lot of back issues and knee problems and take quite a bit of Pain Meds... Most of my trouble with having CP is the emotional part... I always worry about my pain meds and going through withdrawals and it CONSUMES ME AND EVERYONE AROUND ME. I don't mean for it too, but I live with my mother because I haven't been able to work since 2001 and I just got my SSD in January.
I understand that we (CP people) have a tendency to blame those closest to us for everything wrong. I do it to my mother and I love her more than anything... She is just now showing how bad things are to her and it makes me feel so guilty... But there is not much I can do. I'm sure that your partner cares about you but the Pain seems to take over our entire life. We don't want it to, it just seems to always fall that way.

You need to worry more about YOU.. If YOU are in crisis mode then everyone will suffer. Please remember that YOU need support to... Talk to anyone you can trust, even just US, Here. And please don't let your partner make you think that you aren't being Good Enough or doing enough for her... Because YOU ARE...

Like I said, I would give almost anything and everything to have a man in my life that cared a third as much as you seem to...

Aurelia,

Welcome to HealingWell and the CP forum.... When you have a moment, we ask all new members to start an "intro post" -- just click the "start new topic" button on the upper left side.... We do this so that everyone can have a chance to see it and give you a proper hello.

Thanks.... and, again, welcome --Tina