"A Letter To "Fibromites"

I am a spouse of someone with fibro......... by the (late) Donna Euteneier from Fibrohugs.org
A lot of times we as family members, friends, and loved ones are supposed to understand, accept and be sympathetic to someone who has an illness..... and I agree with this statement, but only when we are given information, understanding and support ourselves.
Fibro does not just affect the person who has it.... fibro affects the whole family..... it steals away all of our lives. I have watched, broken hearted, as Ken has packed away his dreams and hopes for the future.... but along with those dreams and hopes were mine also. Just as you have come to realize that your life has changed forever so must we....... and we have to be allowed to morn that loss also.
We become angry and depressed just as you do...... we struggle with KNOWING that you are sick, to being angry that you are sick....... not at you but at the illness. Then we become angry at ourselves for feeling selfish and thinking of ourselves.... thinking of the added stress on our lives... the added responsibility.... the added guilt.
We have gone from a 50% partnership in this marriage, this family, this life, to sometimes feeling like I'm carrying the whole weight of it alone. I have to remember that my spouse is sick..... that the illness has taken that away and sometimes I'm lonely, scared, and extremely sad at the loss of what was....... but I also know in my heart that I love my husband more than life itself and TOGETHER we will find our way.
You have to talk to us.... you have to let us know how you're feeling, what you're feeling, and how it's affecting your day........ your life. If you don't talk to us we will never understand how you are feeling and we will assume that everything is as it should be.... thus expect from you what we have always expected.
I need to be able to say it's "okay" when your angry and hurting........ but it has to be "okay" when I am also. We both have to stop and look at what's going on in our lives at the time....... just as you get angry and lash out sometimes...... so do we.
So will we really ever understand what you're going through? ......No! Will you ever really understand what we are going through? ......No! But if each of us gives each other the time, love, and patience to find our own way in dealing with and accepting what fibro has taken from us, I think our relationships may be a lot better.
I hope with your challenge that you wanted to hear the truth...... and that is what I offer in this.... how we feel as Spouses.

I'm not married and don't have kids.

I was responsible for taking care of my mom. When I got sick only one of my brothers stepped up to help me and help me take care of my mom.

Both my sisters and one brother said "if you can't take care of her put her in a nursing home" When she passed away the three of them had no problem getting here to take whatever they could.

As with any family you may have those that will help and you will have those that only think of themselves and some that fall somewhere in between.

I still have one brother that is very helpful. We disagree and argue sometimes but that happens we get over it. I wouldn't be here if it weren't for him. One sister we keep in touch on and off. One sister it's been about four years since we spoke. And the other brother it's been a year since I heard from him, he tends to come and go.

Sorry but I need to vent alittle. None of my brothers or sisters have children or health problems so there was no reason they couldn't help out with my mom. My mom was always there to help them and so was I but when I could no longer help them or give them money they disappeared. With the exception of one brother. Sometimes I would go in another room and call my sisters and after listening to their so called problems and then go back in the room my mom was in and tell her so and so called and give her the phone letting her think they called to see how she was doing. I think what hurt me the most was how they treated my mom when she was always there for them.

Fibro's impact on my family most of them disappeared

It only brought my mom and one brother closer.

Maryca, thank you o much for finding the spouse letter and all your replies. it is sad what happened. in my family they like to pretend nothing is happening (husband's side) They think fibro means crazy not sick

Thanks so much for the letter to Fibromites. I watch my DH struggle with many of the chores I used to be able to do and though he never complains, I know it affects him, too. I also want to say how sorry I am that your family was not supportive at a time when you appear to have needed them the most. Living with an invisible illness is very hard. And I know from my own experience that when you need support from family and they don't respond, it's heartbreaking.

Some of my family is great about it...they are very supportive, and help when I'm really feeling badly. It took my hubby awhile to accept it, but he is great now about doing what I can't. I know my kids don't understand, may not even believe it exists. My hubby's family really doesn't get it too much...I'm always having to explain why I do this thing, or don't eat that thing....gets frustrating at times....I guess mainly it adds STRESS, which is NOT what we need!

HUGS from down south :)

Today i am thinking a bit better. i meant more like a list.
Mine so far
1. i have less energy therefore we don't go out as often as a family.
2. the house is not as organised (I try to keep it clean but open any drawer and it is a mess)
3. my children have to fend for them selves more - get own break fast and lunch - I still cook dinner most nights
4. i am never on top of the laundry people are always asking for their jeans etc

This is a timely post. I have been soul searching as we approach a new year. I have sufferred with FM for about 15 years,diagnosed 9 years ago. I also have hypothyroidism, carpal tunnel, osteo arthritis,dry eye syndrome. My immediate family knew I have FM but I don't think undestoodhow much it takes to function in life with pain.

I have started sharing with them my limitations because I have had to come to terms with them. I have learned to respect this condition and I try to adjust mylife accordingly

how fibro impacts my family: i have less patience, energy, mobility than i used to have by virtue(or lack) of this I am unable to be who I once was. I am more moody than I used to be and far more forgetful and repeat myself. This is annoying to them at times since they also have to repeat themselves. Therefore they are impacted in almost every way and deprived of the wife and mother they used to enjoy, spend time doing 'things' with, etc. Frankly it is too depressing to talk about. If I dwell on this any longer this day will be shot.

MOM MOVED IN WITH ME BECAUSE SHE FELT BAD FOR ME.... oh crap sorry about the caps.
so we actually became closer. ONE of my brothers moved in, too, but sometimes i think of him to be more of a parasite, tho.

my bf moved in a year ago and he was at 1st pretty supportive, especially after going to my chronic pain follow ups with me. now he prefers to NOT go, and every time i can't physically do something, he gets pissed, but AS he is YELLING at me, he tells me that he doesn't want me doing anything that will hurt me?? it confuses me every time. if its true he doesn't want me to get hurt, then why is he pissed and why is he yelling at me?

and the brother that lives with me.... sigh....
every time i ask him to do something stupid like drive 2 BLOCKS down to get ONE item at the store for me (cuz i'm in too much pain to go), he will put up a fight like i'm asking him to build a monument the size of a pyramid. and he'll say things like "i'm in pain every day too but i still get up early every morning and work, and stuff! so you should be able to go to the store!!" i've tried telling him that if he had what i have he wouldn't be able to work, BECAUSE I TRIED TO! DUH! That's how i ended up on SSDI, moron! but somehow he believes i'm just weak and dont' try hard enough. .....whatever.

needless to say, this FM has caused a lot of unnecessary drama in my life. once in the summer of 05, i moved away from family as far away as possible. but they followed me here.

How has it affected my life? Ugh.I feel like I'm becoming a hermit. Something that has helped is when I'm haveing a very painful day, is I've stopped beating myself up about it. I accept that I have to just stop & take care of me today. That has helped me from getting so depressed. Of coarse my children are grown so I don't have that responability so many others have. I have my grandchildren over often, but they're 7 & 9, so they're pretty easy. But I feel bad I don't do much with them. The place I worked closed down, so with the job market the way it is, maybe I'll be sitting out the winter at home. My boyfriend traded me in for a newer model last week, which makes me feel that I'm not so much fun. Which has nothing to do with him being a jerk. So I guess my biggest problem, besides the pain, is the depression it brings. I need to get off my rear & go see some one.

Fibro and RA has brought my husband closer and my teenage children often help out more. I know that I embarress them sometimes with the handcaped sticker or the way I walk but they just say mom is special with her special helmet on. I laugh and so do they because it is all out of love. My mother is still distant and doesn't help out, she did cook christmas dinner though. She is more wrapped up in her boyfriend then her daughter. I feel like a burdon on my family and that it is not fair to my husband his hopes, dreams, and his future.

Sorry this post is sad and confronting to us- it is something i was not looking at - just buried my head in the sand. i guess i could not look past myself. Still trying to see how it impacts on my husband and kids. i know they love me but i think it has pushed them away. I stay home most days as i suffer for 3 if i go out, My other 4 get up and leave the house whenever they can which is most days.

Gosh
such a sad topic,but reality for suffers...it made me sit up and think,im lucky ive got a hubby whom caring,and family that help best they can...but at one point i think my brothers thought i was mad and never belived how ill i get...i try role for them... put myself in the caring they do ..and its hard on us all...like a living death...we mourn for health we lost...all i can say is cope best u can and dont beat yourself up because of illness...no ones fault..no blame...take one day at a time...enjoy the highs...and cope with the lows...and try not to let it get u down...
hugs to all
lozzy xxx