How have you all managed the effect of Fibro on your Partner & Families?
My main challenges are insomnia and how this affects sharing a bed with my husband as he needs his sleep :-)
My Husband refuses to accept that there's no cure and can't stand the Drs keep giving me medication.
He hates it that he can't help, but I just wish he knew that supporting me and reducing stress would help!
With the children it's getting them to understand why I can't do things, but unfortunately my 9 year old just sees this as something negative that I can never do anything with him except sit down somewhere!
My 3 year old is very accepting as his personality is different and he's younger.
I still work in a very senior job and thrive on the busy role and that it keeps my mind occupied, although it's very tempting to stay in bed, be warm and out of pain.
I think that’s the challenge - making family members understand that you’re not just being lazy - you physically can’t do the things you used to do. When I got sick I was also in a very senior position at work. I was used to juggling a lot of different things at once. I also lived alone and had no problem taking care of myself. Being sick caused me to lose all this independance - I now live with my daughter and am dependant on her to help me with everything from finances to shopping. I got someone in to clean which helped a lot. It has been an adjustment to say the least. But it took a long time to get to this point. I have family that I was once close to that I no longer speak to - they think I’d be better if I lost weight, changed my eating habits, took antidepressants (which I already do), etc. etc. They don’t understand and won’t put themselves in my shoes even for a minute. Sad. My heart goes out to you.
Hi. My husband and my two kids has been wonderful. When I found out I had fibro, I knew it would change our lived forever, so we sat down as a family and we discuss everything we can think of and I believe that helped a lot. So I believe communcation is the key to survive this disease.
My own experience is that relationships with family and friends are seriously tested in most cases. I agree completely with your statement that we try to hide or work through the pain and fatigue for as long as we can, but eventually it takes over. It seems drastic to those who love us - when in fact it really is a more gradual change. They can react in different ways to this change - (1) show care and concern or (2) deny that it's real or blame other factors such as depression or weight. Unfortunately much of my family and a few close friends chose option 2. I was devastated at first, but almost 5 years later I've come to terms with it. I'm fortunate that my daughter understands and supports me. I have made new friends and distanced myself from the relationships which cause me emotional pain and stress.
I know its been a while since the last posting on this subject, but I still wanted to reply. In my experience family (hubby) seem to be able to fully understand and be supportive when it suits them and when my FM is not affecting him. If we are out shopping and he can see i am struggling to walk any more he will guide me to a cafe and get me a drink and let me sit and rest for a while. But on the other hand he will wake me in a morning and say its my turn to get up and make a coffee even though I hurt more in the morning through being so stiff. Other times he will give me what he thinks is a gentle squeeze on my leg which as you all know feels like you are being crushed but cant understand why i yelp with pain and then he goes off in a huff. I keep asking him to read up about FM but he wont. The crazy thing is he has rheumatoid arthritus so he should understand about pain (his is under control\) and remember how i fully supported him when he was at his worst. I get very angry with him sometimes about it but he still doesnt get it. Maybe i should hit him with my walking stick lol, then he might get the message. If i get too stressed up about it it just makes me worse so no win situation. thanks for listening-rant over x
One of my biggest problems with having FMS is the people in my life. I have family members that say, "You just have to get up and do it" , "There's nothing wrong with you, you just WANT to be sick", "You don't LOOK sick" and one of my favorites: "You just want to be the center of attention". Unfortunately, these are people that I cannot cut out of my life. So I just have to grin and bear it....although sometimes they get so carried away with their preaching, that I will snap. But all this does is raise my stress level, which in turn causes my FMS to flare even worse-it's a vicious cycle. I have cut ties with many people when FMS took over my life--I had to quit my job, I can't do anything or go anywhere for any length of time--and some people are just downright MEAN and RUDE about it. Maybe I was raised differently, but the things that have been said to me over the years, I would NEVER say to another person---regardless of who they were or their situation. I have sat and cried so often after these comments, it feels like I have had a constant flare-up for the past 3 years.
Most of my friends I have let go of, because they don't understand why I can't go and do like I used to, and they make tactless and inconsiderate comments. Life is too short to surround myself with negative, uncaring people.
Thank GOD my Husband knows that I am truly sick, and is as supportive as he can be. He helps me as much as he can, after working 10 hours a day. I feel like such a burden to him. He may not fully understand, but he tries. He basically is doing everything around the house right now--and he has his own medical problems. I thank God for him every day--he is a blessing. I have him, my cousin with FMS, and my best friend who has Rheumatoid Arthritis that are my support system. And this group! Everyone here has been wonderful, and so understanding because we all have the same issues. When I read posts, I don't feel so isolated... there are many people who have the same problems as me, so I'm not alone in this anymore!
my family and friends are all over the map about my FM. i have been in therapy for a few months dealing with the sorrow, grief, even guilt and shame about the fact that I am not the active, happy person i was. my mother avoids me, my father ignores me, my brothers think I need some excercise... on the other hand i married the most wonderful man I ever met; he is not in denial about my FM. He works out of town, he just left on thursday afternnon and will come in Monday morning and have to sleep till Tuesday because of working 12 hour night shifts. Although he is not here much his understanding and support of me is the most nourshing relationship in my life. Love feeds my determination to get up in the morning and try. I have been getting up before i have to for getting my daughter ready for school and i take a shower. i was bedridden for so long last year that showers became way too much trouble.
sorry for the ramble. my point is that getting up and having a RIGID schelule is helping me. it also lets the people in my "family" see that i am willing to get up and show up; even if i don't make it 15 minutes without having to lay down... but I find i am getting up and staying up more and more.
I can fully sympathise with you there Renie. I find when people ask me how I am, with that certain look in their eye, I play down how I am feeling. I say I'm fine, coping ok and change the subject quickly. Odd ones are ok but you can tell from the look on their faces sometimes just what they are thinking. Suppose thats why they call it one of the invisible illnesses, nothing to actually see, so how can you hurt so much!
I can totally relate. I have a lot of insecurity about my husband just one day saying to me he can’t do it anymore. Espectially as he is an extrovert and needs to be on the go or he feels down… We went through marriage counseling for over a year and it was a lifesaver. My husband is much more empathetic and understanding now. I know there can be stigma attached to the idea of marriage counseling, but in my opinion it is only a positive thing that has helped us emmencley.
One of my biggest problems with having FMS is the people in my life. I have family members that say, "You just have to get up and do it" , "There's nothing wrong with you, you just WANT to be sick", "You don't LOOK sick" and one of my favorites: "You just want to be the center of attention". Unfortunately, these are people that I cannot cut out of my life. So I just have to grin and bear it....although sometimes they get so carried away with their preaching, that I will snap. But all this does is raise my stress level, which in turn causes my FMS to flare even worse-it's a vicious cycle. I have cut ties with many people when FMS took over my life--I had to quit my job, I can't do anything or go anywhere for any length of time--and some people are just downright MEAN and RUDE about it. Maybe I was raised differently, but the things that have been said to me over the years, I would NEVER say to another person---regardless of who they were or their situation. I have sat and cried so often after these comments, it feels like I have had a constant flare-up for the past 3 years.
Most of my friends I have let go of, because they don't understand why I can't go and do like I used to, and they make tactless and inconsiderate comments. Life is too short to surround myself with negative, uncaring people.
Thank GOD my Husband knows that I am truly sick, and is as supportive as he can be. He helps me as much as he can, after working 10 hours a day. I feel like such a burden to him. He may not fully understand, but he tries. He basically is doing everything around the house right now--and he has his own medical problems. I thank God for him every day--he is a blessing. I have him, my cousin with FMS, and my best friend who has Rheumatoid Arthritis that are my support system. And this group! Everyone here has been wonderful, and so understanding because we all have the same issues. When I read posts, I don't feel so isolated... there are many people who have the same problems as me, so I'm not alone in this anymore!
Hi Nancy, I've seen those sites. Those are the kind of things that get me through the day...knowing that not only do others not have the support they need, but that they have a hard time dealing with it too !!! For years, I always thought it was me --"maybe I'm not really sick..." kind of things. But now? I see the light! I don't talk to those family members that abuse me any more than I ABSOLUTELY have to. The spoon theory is wonderful! But my worst critic, an aunt, I can't even get her to read it. She just throws it away, or walks away if I print it. So, I figure that all of this is THEIR PROBLEM, NOT MINE. I'm sick, deal with it. If you can't deal with it, then walk away. I have my husband who is 100% supportive, my cousin and my friend, and everyone here. I DO NOT NEED ANYONE ELSE !!! That's my new motto! Renie
Another thing I wanted to mention Nancy, after re-reading your comment, is my most critical aunt and I talk often on Instant Messenger. If I say ANYTHING about how I am feeling, other than "fine" -- she will actually just walk away from her computer (I suspect) because she just stops talking to me at all. I find it so childish, that now I won't even open my Instant Messenger--I told her if she wants to talk to me, to either use the phone, or send me an email. Otherwise, it feels like you've just been hung-up on. She can be extremely mean and tactless in what she says---things I would NEVER say to another person, no matter WHO they were or WHAT I thought--and I have told her several times that I refuse to take any nonsense from ANYONE anymore--she's good for a couple days, then right back to her old-self. She's 68 years old, with 3 grown children, living in a huge beautiful house that was WILLED to her -- she's got nothing to complain about, so I don't understand why I'm the brunt of her anger and judgement. Probably because I've always let her get away with it in the past.....so now, I just stay away as much as I can --she keeps inviting me to her house that's 1.5 hours away, where I have spent a LOT of time, but now, I just make excuses. Many times I've cried the whole way home over the way I was treated. I'm 45, not a child. I am working on building that backbone though !!
So I totally sympathize with everyone who's had a negative person in their life -- it is so detrimental to our well-being, that they are not worth it. We NEED to talk about our Fibro, as it is a MAJOR part of our lives! We need all the positive support we can get. Surround yourself with loving, caring, understanding people--like those I've found here in this group!
Me too - I'm right there with you! I thank G-d for having blessed me with a wonderful daughter who has been very caring and understanding. I don't know what I'd do without her. But she knows how hard it is for me to deal with my sisters - one I don't speak to at all and the one I have to because of my mom. I know when my mom passes away our relationship will probably end too. My advice to anyone with fibro is to avoid toxic relationships. It's not you - it's them. These relationships can and do effect us physically as well as emotionally. Fibro is hard enough to deal with - we need the people who get it around us!
Just got this in my email and thought it appropriate to share:
"May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."
I’m right there with you Renie. I just got back from a “visit” with my sister. I can’t even mention fibro around her because she thinks it’s all in my mind. I wouldn’t even visit except it’s the only way I can see my mom. Some people get it but most don’t. Have you ever been to the website - http://www.butyoudontlooksick.com/? I’d suggest you read about Spoon Theory. Also check out the ten worst suggestions commonly given to someone with a chronic illness and you’re sure to smile!!! http://www.butyoudontlooksick.com/articles/sick-humor/sick-humor-th…
Hugs!!! Nancy
Renie said:
One of my biggest problems with having FMS is the people in my life. I have family members that say, “You just have to get up and do it” , “There’s nothing wrong with you, you just WANT to be sick”, “You don’t LOOK sick” and one of my favorites: “You just want to be the center of attention”. Unfortunately, these are people that I cannot cut out of my life. So I just have to grin and bear it…although sometimes they get so carried away with their preaching, that I will snap. But all this does is raise my stress level, which in turn causes my FMS to flare even worse-it’s a vicious cycle. I have cut ties with many people when FMS took over my life–I had to quit my job, I can’t do anything or go anywhere for any length of time–and some people are just downright MEAN and RUDE about it. Maybe I was raised differently, but the things that have been said to me over the years, I would NEVER say to another person—regardless of who they were or their situation. I have sat and cried so often after these comments, it feels like I have had a constant flare-up for the past 3 years.
Most of my friends I have let go of, because they don’t understand why I can’t go and do like I used to, and they make tactless and inconsiderate comments. Life is too short to surround myself with negative, uncaring people.
Thank GOD my Husband knows that I am truly sick, and is as supportive as he can be. He helps me as much as he can, after working 10 hours a day. I feel like such a burden to him. He may not fully understand, but he tries. He basically is doing everything around the house right now–and he has his own medical problems. I thank God for him every day–he is a blessing. I have him, my cousin with FMS, and my best friend who has Rheumatoid Arthritis that are my support system. And this group! Everyone here has been wonderful, and so understanding because we all have the same issues. When I read posts, I don’t feel so isolated… there are many people who have the same problems as me, so I’m not alone in this anymore!
Mel: what's the matter mommy? Me: you know that feeling when you're on the monkey bars at school and your arms start shaking and you just can't hang on anymore, so you get off and do something else, but at the next break a friend gets you back on the monkey bars and your arms hurt so much the next day you just want to cry? Mel: yah Me: that's how I feel right now but all over Mel: why mama, what did you do? Me: I drove.
this sucks. My daughter is 9 and this is the conversation we had this morning on the way to the dentist. Followed by a little more about how tired and sore I was and a little about the spoon theory and about the fact that I haven't done dishes or laundry all week (I'm dog sitting for my mom and I just don't have the energy between going back and forth between our houses- I've got my own pets so I can't just stay there- besides her bed is too hard and lumpy)
I too get upset when I get the comments... my brother is one of those guys who really wants ti fix things. He thinks he's being helpful when he comes by with exercise tips or whatever, meanwhile I'm thinking: you want me to try WHAT?? I;d never get off the floor :P he's heavy into planking and his physio.. he thinks since his physio was able to help him (he really pulled a muscle in his back) that obviously it will help me too.. well it would but not in the same way and I wouldn't be covered like he is with his work.. anyway he said to me "but you're way too young to act so old" my response? "because I obviously WANT to be in pain all the time and not be able to do things with my daughter" I had a chiropractor accuse me of wanting to stay sick as well because not only could I not afford his 3 times a week regimen he was proposing, but I couldn't commit to 3x/week... I don't have a car and def don't have the energy to bus it across town for 2 hrs. man...
Then I get thinking, are they right? SHOULD I be able to do this or that? Am I keeping myself sick? Do I really not want to get better. Maybe I am just really lazy. Then I smack my forehead and say well duh,. but still it's horrible to doubt yourself and everything you think and feel.