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Dealing with Family
Hi - I was diagnosed with Fibromyalgia in May 2008 and have been taking Lyrica and Cymbalta. At first, the Lyrica made me very sleepy and I was able to sleep through the night (as well as most of the day!). After about three weeks on Lyrica I can no longer sleep through the night, and falling asleep is almost impossible!
My main problem is this: How can I get my husband to truly understand and accept that Fibromyaliga is REAL and is COMPLICATED and that I may not be able to turn back into the active person I once was. He has done remarkably well up to this point, but I feel his frustration with me. He thinks that if I just got up out of bed and shook it off I would be ok. If I took a walk or did some activity that I would start to get better. He doesn't realize that when I do take a walk I end up in bed the next day with excruciating pain. How can I get him to understand?
I realize that my question will be impossible to answer, so I guess I am just looking for empathy or to hear your stories. Sadly, my husband's family is extremely active - his mother and one brother are doctor-certified hyperactive, so even at the ripe old age of 80 his mother will still grab a paint can paint a room at any given chance! Imagine how I must feel - tired, sleepy, drained, - when I am around them! They stay up and talk and laugh until the wee hours of the morning, then they get back up after a couple hours of sleep and go at it again! In the meantime, I am dragging behind them all like some old hound dog!!!
Anyway, your suggestions and stories are welcome. Thanks for listening!
My main problem is this: How can I get my husband to truly understand and accept that Fibromyaliga is REAL and is COMPLICATED and that I may not be able to turn back into the active person I once was. He has done remarkably well up to this point, but I feel his frustration with me. He thinks that if I just got up out of bed and shook it off I would be ok. If I took a walk or did some activity that I would start to get better. He doesn't realize that when I do take a walk I end up in bed the next day with excruciating pain. How can I get him to understand?
I realize that my question will be impossible to answer, so I guess I am just looking for empathy or to hear your stories. Sadly, my husband's family is extremely active - his mother and one brother are doctor-certified hyperactive, so even at the ripe old age of 80 his mother will still grab a paint can paint a room at any given chance! Imagine how I must feel - tired, sleepy, drained, - when I am around them! They stay up and talk and laugh until the wee hours of the morning, then they get back up after a couple hours of sleep and go at it again! In the meantime, I am dragging behind them all like some old hound dog!!!
Anyway, your suggestions and stories are welcome. Thanks for listening!
I also printed out the longest symtom list that i could find, what doctors say about it (who believe in it) and I took my husband to a group that had speakers from the Arthritis foundation, a nurse that suffers from it and he got to hear other peoples questions, symptoms and the ansewers from the profesionals. It is hard to find a group like that but this one was done at a hospital, that might be worth looking into. Also some people have video blogs that tell all and show the persons' face and hoe sickly they act. You don't have to defend yourself or use a bunch of excuses- just show your family the most updated, professional info and be done with it. You should find a good councelor or group that you can talk to because your family just doesn't "get it yet". Just do what is best for you. Take Care....
Cramer65 is absolutely right. The only person who is going to be able to take care of YOU is YOU. You know how you feel, you will eventually know what your limits are. You can not push yourself to hard to please others as you are going to be the one to suffer for that not them. It will run you down more if you push yourself to do things. My flare up started in October 07 and I pushed myself to do what I had to do. I eventually had to go off of work in Feb.08 as I could hardly walk, sit, sleep etc. I believe this flare is the worst I have ever had & it could possible be because I pushed myself to please everyone else. DON'T DO IT!!!!! You have to think of yourself first just like Cramer65 said.
But don't hold everything inside. Let people know how you are feeling. My poor husband would just touch me & I would get so mad at him because I thought he was really pushing but it was the FM, some people can't even stand to be touch only because it hurts. It is so hard to explain this monster, I think you are better off letting them read about what you are going through.
Hope you can find some peace.
Val
But don't hold everything inside. Let people know how you are feeling. My poor husband would just touch me & I would get so mad at him because I thought he was really pushing but it was the FM, some people can't even stand to be touch only because it hurts. It is so hard to explain this monster, I think you are better off letting them read about what you are going through.
Hope you can find some peace.
Val
i've had fibro before it was. at first i felt bad that i could not do the things i had done. i rode horses, mc, bikes, hunted. i still at times feel bad and miss it all. but not as bad as the day i was told if i got up and moved around i would not be so tired and hurt as bad. this came from friends and family. i now have fibro, post polio and arth of the spine. if i have a good day and can move around even a little bit better i hear see that bed is going to kill you. the next day i am down and out and i hear i see your back to laying around again. what i am trying to say take care of you. don't spend time worrying about what others thing. i can tell you most of them cry like a baby when they feel just a tiny pain. TAKE CARE OF YOU
I write...a lot...and one of the books I started back in 2001 was about my experiences with FM/CFS and once people read what I had written so far on it, said they kinda got a better knowledge of what I was going through. The internet does have a great deal of info on it and sites for people with FM so worth checking into as well, like noted above by lucky.
I don't know if that is something you could do or if you enjoy writing, but I did it and I didn't leave anything out. I gave specifics and that seemed to do the trick. If it worked for me (not perfectly, but...) it may be worth a try. The ones I cared about went "Oh, I didn't know" and "I'm sorry" and the like...so it could work for you as well.
Many moons later, depending on which friend or family it is, it is still 'hard for some of them to get it'.
No one really can. Each persons is different.
It seems if I'm not bleeding or oozing with pus or blood it must be in my head! It doesn't exist.
Soon after that I quit worrying about how people reacted. I can only be responsible for how I react to what is said. I know...easier said than done, but we definitely have to grow thicker skins with this.
Also, writing in a journal helps as well, beacuse you get things off your chest.
So, hope this helps somewhat.
I don't know if that is something you could do or if you enjoy writing, but I did it and I didn't leave anything out. I gave specifics and that seemed to do the trick. If it worked for me (not perfectly, but...) it may be worth a try. The ones I cared about went "Oh, I didn't know" and "I'm sorry" and the like...so it could work for you as well.
Many moons later, depending on which friend or family it is, it is still 'hard for some of them to get it'.
No one really can. Each persons is different.
It seems if I'm not bleeding or oozing with pus or blood it must be in my head! It doesn't exist.
Soon after that I quit worrying about how people reacted. I can only be responsible for how I react to what is said. I know...easier said than done, but we definitely have to grow thicker skins with this.
Also, writing in a journal helps as well, beacuse you get things off your chest.
So, hope this helps somewhat.
This is difficult for both you and your husband. I am 44 and have had fibro for at least 12yrs. It's important to be really honest about how you both feel, because he will also be greiving the "old"you for a period of time. It doesn't mean he doesn't love you, but that he (just like you) will mourn for the things you can no longer do together. In time if you keep talking, you will learn to re-negotiate what works for both of you, so you don't push yourself too much, and your husband can still spend the kind of time with you that makes him feel special. I wish you both well on this journey that believe it or not can have some wonderful blessings too! janice_ogo
I too have the same problem. My mother and sister believe that I'm lazy and just want drugs though I've never been a drug addict. Believe me I would hand over ALL of the pills I take to feel better. This is like having the flu everyday of your life. My two younger children are so fed up with my illness that they both now live with their father and no longer talk to me. That is very painful. I know where you're coming from and I understand how it feels when your family turns their back on you. I don't have the answers because I haven't been able to find them myself.
My mother's next door neighbor has FM also and my mother constantly talks about how lazy she is and if she would just get off of the pills she would be a better person. She tells me this knowing that I have the same condition. My mother actually got online to look up my condition but still has no sympathy. I haven't spoke to either her or my sister since Christmas. So,the only person who really is here for me is my oldest son and my ex boyfriend, who by the way, has cheated on me since day one which was a recent discovery. I hope your husband opens his eyes and can see that you really don't feel good.
My mother's next door neighbor has FM also and my mother constantly talks about how lazy she is and if she would just get off of the pills she would be a better person. She tells me this knowing that I have the same condition. My mother actually got online to look up my condition but still has no sympathy. I haven't spoke to either her or my sister since Christmas. So,the only person who really is here for me is my oldest son and my ex boyfriend, who by the way, has cheated on me since day one which was a recent discovery. I hope your husband opens his eyes and can see that you really don't feel good.
Welcome. What I did is I went on the internet & printed out everything I could find on the symptoms of FM. I gave it to my husband to read, he finally realized exactly what kind of monster had control of my body. You have to pace yourself on everything you do or you just set yourself back big time. If they are so active tell them to have a good time & enjoy themselves & you just do what you have to do for yourself. As far as I have experienced people eventually understand that you are not capable of what you use to do but you are still the same person on the inside.
Good luck!!! I am sure they will all understand if you give them the literature to read for themselves.
Val
Good luck!!! I am sure they will all understand if you give them the literature to read for themselves.
Val
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