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kingofpain

New member
Joined
Mar 3, 2014
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5
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Caregiver
Diagnosis
06/2004
Country
US
State
WA
I am wondering if there is anyone out there who needs an ear to express their concerns and unexpressed feelings about their loved one's fibromyalgia symptoms. My lovely wife of 30+ years has been diagnosed for 10 years now. She is a very loving, generous woman who is becoming increasingly limited by her condition and (I believe) the side effects from the medications she needs to take in order to cope with her symptoms. I just would like the perspective from other fibro caregivers, because I sometimes can't complain to my partner without her feeling defensive or worse. Hello, anybody out there?
 
I have a both sides of the fence perspective.
For twenty years I was the caregiver to my then husband. He had other medical conditions but it meant I had a lot of running around after him. He was nearly twice the weight of me but I still had to man handle him around at bath time and things like that so I know what you mean when you have your own issues when caring extensively for a loved one. You often have very few people to talk to without sounding callous or heartless. Even with all I did for him he nicknamed me the carer that didn't care. That hurt. But you do find you have to harden yourself against the situation you find yourself in just to get yourself through each and every day.
It doesn't matter how much you love your partner there are times when it's wearing and both physically and emotionally difficult. You can very well get treated by the outside world (especially the medical field ) as an apendage of your sick partner and your own issues shoved aside somewhat as a bi-product of the strain of being a carer. Then there is, like you said, the problem of discussing these thing with your partner. In a normal healthy couple they would confide in each other but when one of you are sick the inflicted person cannot help but feel guilty or in my ex- hubby's case resentful as they take it more personally even if they don't mean to.
Now for me the shoe is very definitely on the other foot. I have now a wonderful hubby who tries his very best to understand and help me when I need it. But I also try my utmost to never make him feel how awful my first husband made me feel.
 
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I have a both sides of the fence perspective.
For twenty years I was the caregiver to my then husband. He had other medical conditions but it meant I had a lot of running around after him. He was nearly twice the weight of me but I still had to man handle him around at bath time and things like that so I know what you mean when you have your own issues when caring extensively for a loved one. You often have very few people to talk to without sounding callous or heartless. Even with all I did for him he nicknamed me the carer that didn't care. That hurt. But you do find you have to harden yourself against the situation you find yourself in just to get yourself through each and every day.
It doesn't matter how much you love your partner there are times when it's wearing and both physically and emotionally difficult. You can very well get treated by the outside world (especially the medical field ) as an apendage of your sick partner and your own issues shoved aside somewhat as a bi-product of the strain of being a carer. Then there is, like you said, the problem of discussing these thing with your partner. In a normal healthy couple they would confide in each other but when one of you are sick the inflicted person cannot help but feel guilty or in my ex- hubby's case resentful as they take it more personally even if they don't mean to.
Now for me the shoe is very definitely on the other foot. I have now a wonderful hubby who tries his very best to understand and help me when I need it. But I also try my utmost to never make him feel how awful my first husband made me feel.
Thanks for the perspective on this. That's the issue, isn't it? To not appear and heartless while still caring for the caregiver's feelings.
 
Not only through pain issues, but I've also been a caregiver to my husband through his battle with cancer. The thing that really stinks about it is that when he has been going through those things in his life, I've been giving my all to him to make sure that he is as comfortable as possible and to take s much as I can off of his plate.

Sometimes, because I am human, I do complain and then I feel worse because even though he knows that I've been there for him, he doesn't understand at all that I've suffered as well. The suffering that I've done isn't physical, it is emotional and it is hard for the person that is dealing with pain and illness to realize that their better half is going through something that is totally different, but equally as painful as what they are going through.
 
Hi and welcome. I am the caregiver of my mother who deals with memory issues. Somedays I am tired and impatient, but I try very hard to be patient and remember she is not doing things on purpose, her brain is just not always on the same page with her thoughts. Most days we get along well, but sometimes she balks and gives me a hard time when it has too do with safety issues that her brain deams as stupid rules to follow. Times like these I have to be firm and not let her do dangerous things. Then of course in her eyes I am the bad guy.

But if you can most of all believe your wife and hold your temper and find other outlets in the form of hobbies or sports, to use up that negative energy you both will do better. If you read the different posts in the pain and venting sections you will see that not being believed and feeling left out of family things can be a big burden, as well as, a feeling of letting down a loved one for what we can not do weights heavily on all our minds.

Give lots of love and encouragement, and listen to what she has to say. Just knowing the love is there is the biggest gift a husband or wife, can give to each other. :)
 
Hello there, Kingofpain! I suffer from fibro, but I've also been a caregiver. As a fibro suffered (who also suffers from other chronic issues), I can tell you that is really great you try not to complain in front of your wife! I get pretty defensive when someone I'm close to starts to protest every time I express my pain or how down I feel sometimes.

But I can also understand the way you feel as a caregiver, because just like you, I also used to take care of someone who depended a lot on me. I'm talking about my grandma who died of cancer some years ago. I was with her until the very end, fortunately she didn't suffer for too long; she died 6 months after being diagnosed. I had such a hard time, because as a caregiver I wanted to make her feel well by not showing how worried I really was. I never let her see me cry... I never expressed how worried I was or anything like that. It was so tough... a huge weight on my chest. So yeah, I can understand how you feel :(
 
Hi and welcome. I am the caregiver of my mother who deals with memory issues. Somedays I am tired and impatient, but I try very hard to be patient and remember she is not doing things on purpose, her brain is just not always on the same page with her thoughts. Most days we get along well, but sometimes she balks and gives me a hard time when it has too do with safety issues that her brain deams as stupid rules to follow. Times like these I have to be firm and not let her do dangerous things. Then of course in her eyes I am the bad guy.

But if you can most of all believe your wife and hold your temper and find other outlets in the form of hobbies or sports, to use up that negative energy you both will do better. If you read the different posts in the pain and venting sections you will see that not being believed and feeling left out of family things can be a big burden, as well as, a feeling of letting down a loved one for what we can not do weights heavily on all our minds.

Give lots of love and encouragement, and listen to what she has to say. Just knowing the love is there is the biggest gift a husband or wife, can give to each other. :)

Thanks so much, 1sweed, your words were very true and helpful for me. I would like to report that we attended the 1 year birthday party for our grandson today. My wife often feels left out of family events because of the limitations of her fibromyalgia, but we made the long drive out of town and she was so happy to participate in the decorations and celebration. This was huge for her to be there for family, and I was happy we could make it.

She is early to bed tonight in response to "overdoing it" today, but well worth it for the memories and sense of purpose for her.
 
dorann,
I don't want to complain to immediate family and friends, but find that "venting" on this forum is somehow least disruptive to my inner circle but very safe & reassuring for me to know others wisdom & perspective on caring for life partners. I appreciate your words.
 
I am very glad that my words brought comfort to you, and also that you and your wife, had a good time at a family gathering and added this day to your book of good memories. You might want to keep a journal of these good days, to remind her of the good times you both have shared and help keep your special love alive. Hope you have many more good days like this one. :)
 
I think that in time we all become caregivers to our partners, or else the relationship fails. In the wedding vows, "... for better or for worse, in sickness and in health...", I interpret that to mean I am committed to be a caregiver for my wife when that need presents itself. Her form of fibromyalgia frequently involves upper back & rib pain that we treat with heat wraps & back rubs. I have learned to use my knuckles and knead with a fist as much as possible, as my fingers cannot massage for nearly as long as she would like. Gotta take care of myself if I am to provide for her, right?
Fibromyalgia is such a weird disease in how it is expressed differently in people afflicted with it.
My wife has a delicate balance of medications that keep her symptoms tolerable. I can't imagine what it must be like for those whose symptoms are not well controlled, or are single without someone to help support them.
Take care, care givers!
 
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