greetings dear fibro family,
this thread is for those of you who are having a hard time in their relationships. fibro is hard on everyone and often ignored or beaten down by those who are fearful of it.
while many of us have good support systems at home and within our friends, many of us do not. this thread is for you. allow us all to be your support system. we know how. we live it with you.
Thanks Blue, This will be a perfect post for many.
For myself i have a understanding spouce and immediate family.
For distant family i don't begin to try and explain. I have learned i don't need to explain why i'm not attending a gathering of family i don't see often. Such as Reunions and gatherings. I've tried explaining Fibro to who i thought were close friends but when you get a strange look in return, it's just best to keep quiet. I assume there are others here who have experienced the same.
Thanks for this thread Blue, hopefully many can get out their frustrations here, where many of us are here to listen.
Thanks for starting this thread. Although my symptoms started 5 years ago, I just received my diagnosis of FMS last summer. I, too, have a very supportive spouse. But I'm currently trying to get my immediate family to understand the magnitude of my daily struggles. I finally reached out to my mother recently and she's reading one of my books that explains the multitude of symptoms this condition comes with. My siblings, on the other hand, just keep trying to give me solutions. How do you explain to those close to you the sacrifices that you are forced to make on a daily basis? Simple things like needing food from the grocery store but not being able to go because I can't lift my 5 and 3 year olds into the carriage and push them around without paying for it for the rest of the day? Or not being able to hang out on the front steps with neighbors for an extended period of time because sitting on hard surfaces makes my legs flare up? Thanks for listening. Just needed to vent.
when you go to the store ask the people there to lift your kids for you. they will. as for the front stoop chats, when your fanny hurts stand up and say, this has been a blast, time to take my personal pain in the arse inside. night friends. laughter smooths over the moment.
sounds like your siblings want you well and in their way they want to bring you the magic that will do just that. my son is the same. bless his sweet heart. i am glad your mom is reading.
remember no one is going to really understand. they can only gift us with compassion, kindness and a helping hand.
ah i know that look well. it used to confuse me as to what they were thinking. i realize now it is only that there is no understanding fibro. i sure don't. the main reason i don't talk about it to others is it really gets boring for me. i come here and chat with you all, listen, talk too much, and i enjoy it.
this is one of my sanctuaries, as is the mountain. the rest of the world is my play ground. a place to enjoy as much as possible.
ps. thanks glojer. one of our sisters got me thinking in another thread. she inspired the start of this. not me.
Thanks Blue, your words flow so smooth. I seem to stumble with mine as trying to say what i mean but then it gets all scrambled. Your such a inspiration to many. thank you
Christine07, Please be patient with your mother understanding Fibro. I'll try & make this short. I gave my mother fibro pamphlets anything i could find to read so she could have some sort of idea of this nonstop pain of mine.
She just could not seem to understand, until one day she came to visit me unexpectedly. She saw my pain with her own eyes. This day i had pain so severe, it frightened her. Her exact words to me were, take a pain pill and lay down. I explained to her my pain pills do not help me at all on days like this. My mother then said if anyone ever speaks negative of you having fibro and what you are living thru, i will set it straight to them.
This is what it took for my mother to begin to understand Fibro pain, seeing is believing. Be patient Christine and always take care of yourself.
This is a good place as this is the only place I have to vent or chat about how I feel. My spouse does not,will not and maybe cannot understand how I feel so he just egnores it. Thus so do I. Maybe it is good for me that way. Keeps me on my toes (even when they hurt to stand on) and I am unable to ever and I do mean ever sit around, lie in bed or feel sorry for myself. I would surely sink. I have only me to count and I have my baby and my spouse who count on me. Don't get me wrong I would love one day to lay on the sofa and rest. I feel completely beat down and my spouse does help out with what I ask so I cannot complain but he doesn't do things like ask how I feel, rub my shoulders or ever look to see the pain in my eyes. He just goes on like normal. We fight more because I am angrier since I hurt more.
So that leads me to ask you all, what do you do with a semi self centered man how egnores everything good or bad? It is obvious that he does that with my pain and with life with me. It is very frustrating. My personality though keeps me trying. And we have a 2 yr old. He is a great dad I may add. But not a great husband. I fear what happens if I get worse.. And speaking of worse my spouse is slotted to redeploy to Iraq this summer. That leaves me with doing it all. We cannot afford any more help as I am going to pay a nanny (my sons old teacher) to work for me during that time and it is taking all our extra money for that. I figure I can have the horses mow my yard (ha) but I have 3 acres, 2 dogs, 3 cats, 3 horses and work fulltime and my son. Any ideas?
Ya know, I really don't think that ANYONE can really understand your pain unless they experience it themselves. Sometimes I feel like I have the support of my family and sometimes I feel I don't. I try not to complain all of the time, that is why these boards are so important to us. I gives us a chance to vent and let out some pent up emotions. I am 58 and I thought I had it bad when I felt the milk container was too heavy to pick up. You guys have little ones at home. That would be soooooo very hard.
Blessings to all of you.
I agree having young children to take care of would be so hard. I am sure I had some fibro when my children were young but nothing like now. Even though the experts say fibro is not progressive, we all know different. I don't explain fibro or even tell too many people I have it. There is no reason, I just do what I have to do or feel like doing and go on from there. At my age (59) I really don't care what others think and I don't need to explain myself or why I can't or don't want to do anything, to anybody. Age is so liberating....giggle!
As I slowed down and didn't do as much as I use to my family just learned from that and they are very understanding. By family I mean immediate, husband, brother, children and best friend (we are like sisters). Funny thing, I had a great deal of understanding from the people I use to exercise with in my exercise class. I use to belong to a ladies 30min workout place that had exercise classes and lots of good stuff. Unfortunately it had to close down. Anyway they were great and very understanding, I met a few who had fibro and some who had arthritis. They had special classes for those with joint problems.
Everyone has their problems and their aches and pains, we don't know how bad it is for others and they don't know how bad it is for us. You just have to keep a smile on your face and keep going.
Young marriages and relationships are so difficult. With children and all that goes on daily with trying to make a life together. I have been there and it is hard, we get caught up in our own daily struggles and forget about our partners. Sometimes if we can just step out of that box and give our partner a boost they in turn see our struggle and things get better. What really helps though is perseverance and patients and before you know it the years go by and all that back and forth pays off.
Hi. I am new to this site and was excited to find it. There are people out there who understand and are going through the same things.
I have pretty much no support. I am 41 and moved in w/ my parents in Summer of 06 because I returned to school. Neither one of them truly believe me. My father says it is mind over matter and my mother just pretends like it does not exist and talks about how sorry and lazy I am. I asked my father to co-sign a student loan w/ me that would allow me to quit work (I work part time) and he told me I needed to quit school and go to work full time. The depression is worse and worse because I feel like no one understands or gives a damn. My sister seems to believe me but she just figures I should toughen up. Not sure if my brother even knows. I haven't bothered to tell him. My friends care but are tired of hearing abt it. Basically I am on my own. I plan to move out of here in the summer when I have more money but I am terrified I am going to lose my job. And I am afraid that eventually I will not be able to work and go to school. I feel like I am losing my dreams.
Thanks for letting me get this off my chest. I feel like I am very isolated right now and it helps to say it.
Hope everyone is feeling well, pain free, and sleeps the sleep of angels tonight.
This is a great place, this whole board is great as I use several of the sites. I suppose I am lucky in a lot of ways. I can work. I do not get sick enough for being in bed. Most of my pain is in my hands and arms, shoulders and neck. I am so used to it that what was once a 10 is now a 5. I would love to work from home and I am searching for something to supplement my retirement so I can retire in a year and a half. My job has 30 min breaks every hour so that is great too. I do hope I do not progress worse, I know some things are worse like knees, feet and ankles. My ankles are killing me today.
My little one is my life saver. I would surely sink without his needing me. I do have to tell him occasionally that i cannot hold him or I have to put him down because my arms hurt. He knows I have bad arms and is really good about it. He is at the age that I dont carry him much and he plays well alone.
Shy- do not feel isolated and do not feel alone. You cannot give up and give in to this disease. You can not let it win. Use your mind over matter. Again as I state often "do despite". Get moving. Maybe you need to go to night school and work during the day. What is the reason for school now? Is there a career path you want? If school is just to go to school you can do it parttime and work. If you even work parttime to get your mind off of your pain. Do something you enjoy. Life is very short please do not let depression take over.
often in life we must open our minds to an alternate road to the realization of our dreams. while the alternate may be longer the destination is the same. i have a way of knowing things. you will make it thru and graduate. it is the family you have that is an aspect of that energy which spurs you onward to your destination. often the adversity is a catalyst for change. i just ignore the comments. know what? they stop when you don't react. where is the fun if you don't play along?
realistically we are alll on our own with this. we have family supportive or not. we have each other and that it good, good, good. it helps. especially the honesty expressed here, protected from judgement. yet when we lie down at night and feel our fatigue and pain we are alone. it is for each of us to be our own cheering section no matter what life gifts us with. learning to be me was not easy, yet i like this person, so i keep her.
believe in your own ability to do this. if you don't it does not matter what anyone else thinks or says. believe.
ps. thank you all for coming and sharing.
Thank you, bluelakelady, I appreciate you and your thread. There is something I am battling, my husband. He does not understand, and is worried about the meds I am prescribed. It comes out as being blamed for putting my family through this, and anger and that he can not fix it. Sometimes I get lost as to if I should talk to him or just battle it on my own. I take care of my boys, 2 and 4, 100%. My husband does not believe me, he knows I have tmjd pretty bad, but does not understand why I have body pain and is afraid I am making up my pain. He feels he sees what I am going through and it does not need the meds I am prescribed for pain. I see him for about 1-2 hours a day. I started a pain journal yesterday so maybe he can read it and see what I go through hour by hour. I would love any other suggestions you and anybody else has with handling husbands, and explaining chronic pain.
you already know he does not know the way to listen. an answer for him about your meds. your doctor knows more about your health and how to treat you than hubby does. you trust your doctor to do right by you and that is all that matters. period!
i keep my meds out of sight. i learned this while living in a rather abusive relationship with a man who also thought i was making it up and overmedicating. he is long gone and i am still here, a happier woman who takes her meds, trusts her doc and most of all trusts herself.
it is up to you to decide if the journal will do any good. who knows? always worth a try. be prepared tho. it could blow up in your face. ask yourself if it is worth it to you. often we set ourselves up because we just have to be "heard" and "understood". i asked myself once, why do i need this man to "get it"? ultimatly i am on my own with this. so why? realized i didn't need it after all. i know and that is enough for me.
let me know how it goes. one always hopes. and hope is important. also important to know where to place that hope and know what you are hoping for.
Hello! I have not posted for a super long time! I'm 34, a first grade teacher with SEVERE fibro. I feel very sympathetic to those of you who are struggling in marriages. I am a single mother of 2 year old little girl who is FULL of energy and spunk. I've been dating a great man for 8 months and he just broke up with me. He was very kind about it and complimentary of the person I am and the positive effects I've had in his life. However, although he didn't come out and say it, the reasons he gave for needing to end the relationship are centered on this darned fibromyalgia. I hate it right now. I am so angry at it!
He feels I don't go out enough (because I don't feel like it after teaching six year olds all day long, week after week--sometimes I have to sleep for hours on Saturday to recupe!) The sleeping-in appears as laziness to him, even though I've explained the fibro and my needs for sleep and have given him books to read. I don't like to go and have heavy workouts with him--he runs and lifts weights. Sometimes I'm so tired I can't cook at night. I feel too tired for any type of night-life activity such as going out for a drink or to a sporting event. Basically, after my intense work day, I probably seem like a couch potato! And that's when he wants to hang out and go out!
When I think of the pre-fibro me, I was always on the go, always in the gym and fit, always working so hard and going the extra mile. I waterskied, ran, went out on weekends, was bubbly all the time. He would have loved it. He doesn't get to see that. I have to show him the dragging, exhausted, low-energy me who appears lazy and unmotivated. It hurts so badly because if I consider my own desires pre-fibro, it would certainly not be to marry a sick, tired person who acts 85. I HATE this illness!
To top it off, I was diagnosed with sleep apnea, and I had to start using the breathing machine at night to sleep. The mask is so sexy!....NOT! What a bummer to any new relationship, right?!
Also, before this guy, I had to end the relationship I was previously in because that guy wanted to get married and have children biologically, and I do NOT want to get pregnant!! I had a TERRIBLE pregnancy off meds! I can't do it! And he was so cool and a lawyer! I'm giving up great guys due to being sick and it stinks!!!
I am really lacking hope right now for new relationships because I feel that with this illness, I would be an unfair partner to any man, and it would only be a matter of time dating me before they figured it out.
Those of you who have good spouses, please show them how much you appreciate them and the way they understand and put up with the illness!! It's hard to come by!!