I've read several discussions here, and agree that we all are experiencing something difficult. While reading,
I haven't found anyone opening up about the way their pain is affecting the ones around them. I live with another patient and her husband, and have experienced first hand how she is taking her pain out on him. I wouldn't have believed it if I didn't see it myself; and it is hard to watch and not say something to her.
I am certain that I have been guilty of this as well, in my past relationships. I can blame it on ignorance, but I'm beyond that, and know more about how pain impacts our lives. I do watch very carefully my own words and actions.
Anyone willing to share their thoughts, experiences, views?
Mine is the other way with sometimes no consideration for my symptoms. Then on other days he is a saint. I mean no violence at all, but just little things that worsen my symptoms; for example, following down the car window when he knows the air hurts my ear, neck, shoulder, etc. and refusing to roll it up.
Your housemate needs help. That much is evident. Does she have insurance or can work it out someway? Can you “shrink” her. I know I have had over 17 years of psychotherapy and am pretty good at it. I know my Pain Clinic pretty much requires you go, but I was going before I went. She needs to vent in a positive way. Does she even have a pain management system? If not, that is essential. How are you going to talk to someone reasonably who is not?
So I believe she she needs physotherapy and a good pain management system. I forgot to ask if she was addicted to any type of prescription or nonprescription drugs? This, of course, could be a cause of many problems.
This is a great topic for discussion. When I became ill I had to move in with my adult daughter. It's been very difficult for her and I'm so grateful that she was willing and able to take me in. SHe's also had to take over my finances because I get so overwhelmed and frustrated whenever I have to deal with this. But I know I am very hard on her sometimes even though I don't mean to be. Especially when I'm in a lot of pain or feeling confused. I wish there was a way I could turn this off but it is almost automatic. Caregivers have the hardest job and they end up being the brunt of a lot of the frustration we feel at not being able to do the things we used to do so easily.
In my case I try to act as normal as possible, so that they do not worry that much, but you can not hide the sun with your hands..........They see my suffering..........But I try to keep calm because if I get upset it is not going to solve any issues, or it is not going to take the pain away. It will get things worst!
Pray for guidance and support so that your loved ones understand some of this issues. Keep in mind we are all humans and we are not perfect. Understand when a loved one reacts and gets tired of seeing you like this, you just have to listen. Remember it takes two to fight or get into an argument..........So learn how to listen........Once again we are not perfect we are humans but try to live one day at a time. Pray for strength and remember that God does not let us carry on stuff that we can no handle........The why me? or when is it going to end? I so not have the answer.......But we are all special and loved.
My friend (will call her Cherry) has been seeing a social worker daily for at least 20 yrs, and I can tell you this person is doing my friend absolutely no good. And I cannot say a word about it; she will not listen to me, or anyone. I cannot help her, I have tried nicely these last two years, and she just shuts me out, eats bad good, tunes me out and tells me to bug off. I've seen her go from a size 8 to size 3X. All because she is overeating and indulging in everything that is bad for us, while I spend hours researching various ways to improve my symptoms. I eat and exercise and meditate; no doctor can help me and I must take care of myself. I do think I am improved because of my devotion to reading and researching and experimenting with various techniques and methods. And all of you help so much)
And yes she is addicted to tons of meds, serious ones.
tricky123 said:
Mine is the other way with sometimes no consideration for my symptoms. Then on other days he is a saint. I mean no violence at all, but just little things that worsen my symptoms; for example, following down the car window when he knows the air hurts my ear, neck, shoulder, etc. and refusing to roll it up.
Your housemate needs help. That much is evident. Does she have insurance or can work it out someway? Can you "shrink" her. I know I have had over 17 years of psychotherapy and am pretty good at it. I know my Pain Clinic pretty much requires you go, but I was going before I went. She needs to vent in a positive way. Does she even have a pain management system? If not, that is essential. How are you going to talk to someone reasonably who is not?
So I believe she she needs physotherapy and a good pain management system. I forgot to ask if she was addicted to any type of prescription or nonprescription drugs? This, of course, could be a cause of many problems.
I'm not sure that it is only the pain. I've experienced frustration, anger and anxiety along with mild depression. And I definately used to take it out on my husband (and still do sometimes). Feeling sore all of the time is exasperating to say the least and coupled with constant exhaustion make for a VERY cranky wife. I've found that mindfullness based meditation and cognitive therapy has helped me to focus on 'what I'm doing right now'. I do feel that I'm living my life in slow-motion when I try to use these tools - I have to be so deliberate with everything and that in itself is annoying. However, it does work. Your room-mate may not be ready to seek help - maybe she's still stuck in the 'why me?' 'I'm really mad about this' phase without being aware of it. If she is ready to get help, a good physical therapy program is a great place to start, along with emotional support from a therapist. I hope she's ready!
Nancy, no matter what you do, your daughter knows you love her. And if she loved you enough to help you out, then you are both blessed. If you haven't already done so, share this site. with her, it might help My Mom was always upset with me, and if I had known about how pain affects us at the time, I could have adjusted to it.
Nancy M said:
This is a great topic for discussion. When I became ill I had to move in with my adult daughter. It's been very difficult for her and I'm so grateful that she was willing and able to take me in. SHe's also had to take over my finances because I get so overwhelmed and frustrated whenever I have to deal with this. But I know I am very hard on her sometimes even though I don't mean to be. Especially when I'm in a lot of pain or feeling confused. I wish there was a way I could turn this off but it is almost automatic. Caregivers have the hardest job and they end up being the brunt of a lot of the frustration we feel at not being able to do the things we used to do so easily.
i've had fibro since 1985,, i am on my 3rd marriage, and i have no support by family or friends.....and now my husband has altzheimers.. so yes there is alot of frustration on my part... i feel i have to do it all.. and sometimes i just want to lay down in my bed a scream and cry....but i just push on, because in my case it will only get worse...
I don't know, My mom is my biggest helper even though I live on my own and I DO get the crabby's with her sometimes.. She does me a favor for something and I'm the meanest witch in the world. I've been appalled at myself sometimes, wondering what the heck I was thinking or saying. I've had us both in tears about absolutely nothing a couple times. I'm very lucky she puts up with my crap and is still willing to help me out. Now I've also gotta say that I don't do that every time we get together, but sometimes something triggers the witch in me and boom there's no looking back. Mom is very understanding though. My daughter on the other hand isn't always so understanding, luckily I don't get the rages towards her very often, or if I feel the witch coming on I can ask my mom to come take her out for a movie or something
These random rages or witch switches (that's what we call it- and the witch switch sticks) Is that a symptom of fibro/chronic pain/ or is it a med side effect? this hard learning all these new things
I have had fibro for as long as I can remember. I married ten years ago, but my husband died 2 years after we were married. He was not thoughtful of my pain, as he was an alcoholic. I had to move back in with my parents after my house went into foreclosure. MY parents are in their 80's, they have their own pain. I think my mom might have fibro as she has pain like I do. She won't ask her doc to test her for fibro, as if it's some BIG thing to be ashamed of. She thinks she has some kind of "mystery" condition. She wants to go to Mayo clinic, when there are many good doctors here in Chicago. She doesn't want to take any kind of medication. She just won't accept any kind of explanation.
A subject and responses as painful as fibro itself! We all know that unless someone has walked in our shoes or has a similar condition, most people don't understand. I'm blessed to have an understanding hubby as he was diagnosed a few years ago with RA. Then several months ago he had generalized pain all over and was miserable. Thankfully it only lasted a couple of days, but when I told him that he what I have to deal with everyday, his empathy went to a new level.
I think fibro is one of those diagnosis that you go thru Elizabeth Kubler-Ross' 5 stages of grief: denial, anger, bargaining, depression, acceptance. It is hard to face the loss of so many of the things you once loved and feel like your body is betraying you! It's often said "you hurt the ones you love the most". I think sometimes we feel safer doing that, but not only a daily or weekly basis!! I try to let my husband or family/friends know if I am having a bad day and apologize ahead of time for anything I might say or do and again when I do it! You do have to take personal responsibility. I can't imagine how those around 'Cherry' feel...it's not fair to antagonize those who are trying to care about you and offer support. How frustrating to watch her self-destruct. I wish you many blessings and prayers and that you will continue on your journey!! {{ }}s Bonita
It's very hard for other people, especially those close to us to understand what we're really going through.
I find my Husband just asks "what can I do to help" which is great but he thinks if I mention the pain he needs to solve it!
It's hardest on my kids though as they can't see it so almost don't believe it which is only natural. The eldest one gets frustrated I can't do what other mums do, however the youngest one is a little more accepting.
I think the best we can do is stay happy, positive & try our best to do as much as we can.
Life's too short to spend the time in bed, and I find when I do push myself I can get through the day either at work or on a day out with the family.
Thank you - I know she knows how much I love her and I feel so very blessed. I know many people are not so fortunate to have even one family member who understands. It's a constant struggle to remain positive. It helps to have this place to vent and share the frustration without having to take it out on my family. I push myself to stay as active as possible. It doesn't seem like I do that much to my daughter - but truth be told it's hard for me to do even the few things I do. Thanks!!!
JIllian James said:
Nancy, no matter what you do, your daughter knows you love her. And if she loved you enough to help you out, then you are both blessed. If you haven't already done so, share this site. with her, it might help My Mom was always upset with me, and if I had known about how pain affects us at the time, I could have adjusted to it.
Nancy M said:
This is a great topic for discussion. When I became ill I had to move in with my adult daughter. It's been very difficult for her and I'm so grateful that she was willing and able to take me in. SHe's also had to take over my finances because I get so overwhelmed and frustrated whenever I have to deal with this. But I know I am very hard on her sometimes even though I don't mean to be. Especially when I'm in a lot of pain or feeling confused. I wish there was a way I could turn this off but it is almost automatic. Caregivers have the hardest job and they end up being the brunt of a lot of the frustration we feel at not being able to do the things we used to do so easily.
I am enjoying this group more than any I have entered. Thank you all for your unknowing support. It is a blessing each day to enter. Today I was able to get out-how wonderful. I bought my new vehicle on the 17th, and this was the 3rd time I was able to drive it. I feel so fortunate. Unfortunately, I cannot put on a happy face and push myself. I am too far gone with too many other health problems, but is it not great that some of us can? I feel for all of you and wish you a great day.
You faith keeps you very strong, my friend. I wish I could be like you. You are an awesome wife and mother, even with your trials. I admire you!
Love, Renie ✟
AlexPeletay said:
In my case I try to act as normal as possible, so that they do not worry that much, but you can not hide the sun with your hands..........They see my suffering..........But I try to keep calm because if I get upset it is not going to solve any issues, or it is not going to take the pain away. It will get things worst!
Pray for guidance and support so that your loved ones understand some of this issues. Keep in mind we are all humans and we are not perfect. Understand when a loved one reacts and gets tired of seeing you like this, you just have to listen. Remember it takes two to fight or get into an argument..........So learn how to listen........Once again we are not perfect we are humans but try to live one day at a time. Pray for strength and remember that God does not let us carry on stuff that we can no handle........The why me? or when is it going to end? I so not have the answer.......But we are all special and loved.
I try to let my husband or family/friends know if I am having a bad day and apologize ahead of time for anything I might say or do and again when I do it!
This is what I do, and it does help. But it still doesn't help the guilt I feel for doing/saying anything in the first place.
Renie
NotMsBHavin said:
A subject and responses as painful as fibro itself! We all know that unless someone has walked in our shoes or has a similar condition, most people don't understand. I'm blessed to have an understanding hubby as he was diagnosed a few years ago with RA. Then several months ago he had generalized pain all over and was miserable. Thankfully it only lasted a couple of days, but when I told him that he what I have to deal with everyday, his empathy went to a new level.
I think fibro is one of those diagnosis that you go thru Elizabeth Kubler-Ross' 5 stages of grief: denial, anger, bargaining, depression, acceptance. It is hard to face the loss of so many of the things you once loved and feel like your body is betraying you! It's often said "you hurt the ones you love the most". I think sometimes we feel safer doing that, but not only a daily or weekly basis!! I try to let my husband or family/friends know if I am having a bad day and apologize ahead of time for anything I might say or do and again when I do it! You do have to take personal responsibility. I can't imagine how those around 'Cherry' feel...it's not fair to antagonize those who are trying to care about you and offer support. How frustrating to watch her self-destruct. I wish you many blessings and prayers and that you will continue on your journey!! {{ }}s Bonita
Social isolation is very common with fibro. I know what you mean about losing friends. The changes in me made me a different person in many of my friend and family members minds. They couldn't accept that these changes were the result of the illness and something I couldn't control. But as hard as it was to make new friends, I've done it. I joined a local Scrabble club and made friends with many of the members. I also met a lady with a handicapped child and others just by making an effort. Since these people didn't know the old me, they knew what they were getting, so to speak. There are so many people with the same types of issues who do understand what you're going through. You just need to make an effort. You can do this through your church, by joining a club, taking up a hobby -- anything which puts you in a social situation. It's good for you and will help raise your spirits. Some people may not stay around but that's okay. Make friends on this board if you can't get out. Do not give in to fibro!
Nancy
SarahW said:
This is a very hard discussion for me. I went through a period of intense depression before I was diagnosed with the Fibro and lost a few friends. Now I live by myself with just my cat. I have a few friends but am afraid to let them get too close because I am afraid I will hurt them and they will leave. I lean on my siblings and parents some but none of them are in town. They all live elsewhere so they can only do phone support. i am even afraid to say too much at church for fear that people won't want to deal with me. I've never had an intimate relationship because of all this and honestly do not see how it would ever happen. I cherish the friends I do have but my life is pretty isolated. This isn't the most cheery post, but it's what's true for me right now. I am working to find a good doc and to figure out how to get exercise in and all that. I really am just at the point where I can handle researching things and really working to manage the Fibro because I spent so much time just trying to manage the depression.
Awesome Sarah! I know it's hard but keep on trying :)
SarahW said:
Thank you Nancy! Your words really help me to adjust my attitude! Truly.
I am working to make friends. I make myself get to church at least twice a month and have joined an eight weeks small group there. I am meeting people in my eating disorders group who may turn out to be friends. So I'm trying. I am not giving into the Fibro. Or at least I'm trying not to. I have a lot of days where it feels easier to just be alone. That is aided by the fact that I am a natural introvert. But I'm trying. It just is very hard sometimes. Lots of times. And I love love love my sisters who, even though not in town, will talk to me on the phone whenever they can and are so good about asking how I am feeling. I just get down about it all, you know?
Nancy M said:
Hi Sarah,
Social isolation is very common with fibro. I know what you mean about losing friends. The changes in me made me a different person in many of my friend and family members minds. They couldn't accept that these changes were the result of the illness and something I couldn't control. But as hard as it was to make new friends, I've done it. I joined a local Scrabble club and made friends with many of the members. I also met a lady with a handicapped child and others just by making an effort. Since these people didn't know the old me, they knew what they were getting, so to speak. There are so many people with the same types of issues who do understand what you're going through. You just need to make an effort. You can do this through your church, by joining a club, taking up a hobby -- anything which puts you in a social situation. It's good for you and will help raise your spirits. Some people may not stay around but that's okay. Make friends on this board if you can't get out. Do not give in to fibro!
Nancy
SarahW said:
This is a very hard discussion for me. I went through a period of intense depression before I was diagnosed with the Fibro and lost a few friends. Now I live by myself with just my cat. I have a few friends but am afraid to let them get too close because I am afraid I will hurt them and they will leave. I lean on my siblings and parents some but none of them are in town. They all live elsewhere so they can only do phone support. i am even afraid to say too much at church for fear that people won't want to deal with me. I've never had an intimate relationship because of all this and honestly do not see how it would ever happen. I cherish the friends I do have but my life is pretty isolated. This isn't the most cheery post, but it's what's true for me right now. I am working to find a good doc and to figure out how to get exercise in and all that. I really am just at the point where I can handle researching things and really working to manage the Fibro because I spent so much time just trying to manage the depression.
Hi SarahW and Nancy M, I belong to a Mental Health group also, due to the depression that I have from Fibro. We were talking about this today too. We were trying to figure out why we try to make everyone happy, and avoid confrontation. Sarah, I am EXACTLY like you. I'm afraid to say anything to anyone, that it might be the wrong thing, and I'll cause a confrontation, or they won't like me. We both need to grow backbones like Nancy has ! It's probably the hardest thing I'll ever have to do, but Nancy, you had some really great ideas. I've isolated myself so much, I have my husband, 2 cats, 2 aunts who are mean like devils to me, and a couple cousins who are truly caring. I live in a tiny tiny town, no where to even go people-watch. Walmart is 1/2 hour away. I feel so alone and isolated, and I really need to make the effort.
BUT: I HAVE MADE SOME AMAZING FRIENDS HERE -- SO YOU SHOULD COUNT THEM TOO !!! There are a couple people here that have gotten me through some really bad times, and I love them very much for that, and consider them close friends--even though they don't even live in the same country!
I know we need physical interactions, not just telephone or computer....but when that's all we have right now, make the best of it. I'm proud of both of you for joining in at church and local clubs. That takes a lot of guts !
Good for you too Renie! You can both count me as a friend and I'm sure there are others here too ;) It is work to get yourself out but the rewards are so great. And when you don't have the energy to go, having those friends can be so helpful too. If a person can't accept you for who you are then they are not worth having as a friend. Be yourself. That doesn't mean you have to constantly moan and groan about your pain and fatigue. But if you're having a bad day, a true friend will understand that.