feel isolated

Discussion in 'Fibromyalgia Main Forum' started by daisyraisy, Mar 16, 2006.

  1. daisyraisy

    daisyraisy New Member

    does anyone feel isolated with the whole thing?
    daisy raisy

    also are a lot of people house bound with it

  2. alaska3355

    alaska3355 New Member

    My son has CFIDS, and he HAS to get his 12 hours of sleep a night...for an 18 year old, he doesn't get to do much at all with friends. He takes it well, but I know he doesn't like feeling different from everyone else.... Terri
  3. NyroFan

    NyroFan New Member

    I feel very isolated by these disorders. Yet, I would much rather be 'alone' and connected to cyber-people. It works out best for me. I can click on and off as I feel. It is not like when you are out with people and just want to run home and hit the bed.

    I use a wide variety of resources on the net and it works out well for me, not just here in this group, but in groups that meet my other interests as well. Also, I have some pen pals I have gotten close to. They seem like better friends than the old 'real' ones I used to have.

  4. pemaw54

    pemaw54 New Member

    I had to leave my job and my work friends. Cant sit through a church service. None of my family understands the extent of my pain. My husband and youngest son are always behind me but they really have no idea. This message bd has saved my life. I got so low,I thought suicide was the only answer and then God found all of you for me.

  5. Adl123

    Adl123 New Member

    Deear Daisyraisy,
    Yes, I feel isolated, especially in the winter, when I only leave the house to go food shopping. I catch everything, so I need to keep away from other people, especially children.

    At first I was angry and depressed, but lately I have come to enjoy the solitude and peace. Alrthough, I will admit that I'll be happy when flu season is over and I can go to my meditation group and the movies, again.

    Even in good weather, I am at home, mostly, I just don't have the strength. I've started acupuncture, and for a week after each treatment, I feel really good. So good, in fact, that I have to be careful not to overdo. There is hope.

    Here's hoping that your enforced solitude lightens for you.

    Big hug,
  6. libra55

    libra55 New Member

    I know what you mean. although I am not housebound, I am very isolated. i am not able to work so our income has suffered. at the same time this town has become very affluent. there are different type of people living here now then when we came 20 yrs. ago. I have slowly felt myself squeezed out of the social loop because i cant keep up physically or economically. in addition i have an autistic child and people are uncomfortable around that situation so they avoid me..

    I have 3 good friends none of which live in this town. They would do anything for me. Also 2 great neighbors. we also help each other out. we are all in the same boat economically, squeezed by the newbies in the big houses with big incomes. and my friends on this board without who i would be lost.

    you're never alone here.

    ((((((((Hugs)))))) to ya,
  7. sixtyslady

    sixtyslady Member

    yeah I sure do.sometimes I feel like no one would even miss me if I disaapeared off the face of the earth.
    My older children got together and decided to avoid me until I get this sickness out of my head. so that means I don"t get to see the grandkids and its breaking my heart I feel like I"m being punish for being sick. Its the worst thing I"ve had to go through.So I write little notes to my Grandkids. and sometimes they will call me. My daughters haven"t called me since xmas. My heart is broken.I cry myself to sleep and even wake up crying sometimes.most of my friends vanish years ago when I could"t do alot of things anymore.
  8. sunshine54

    sunshine54 New Member


    Moved from Indiana in 11/04 to a town where I knew nobody. Got rear-ended in 3/05 and been down hill since then.

    Had a full-time job in Indiana - now, not able to work. Have to use a walker with hand brakes in the house. Have permanent handicap license plate and fighting for social security disability with the help of an attorney.

    My husband drives a truck so he works 12-16 hour days. He has to cook if he wants something to eat. Some weeks I'm able to cook one meal a week, but not since my last surgery. Used a housekeeper twice, but she hurt her back and in small town don't know anyone.

    Hubby usually takes me to Wal Mart on Saturday and I try to sit thru Church on Sunday, but missed this last Sunday due to pain. I sleep 10-14 hours a night/day. Guess it is the meds and the pain combined that makes me sleep.
  9. 1sweetie

    1sweetie New Member

    My heart feels for you. Never in my life have I dealt with anything so destructive. It took the successful life that I had,what I thought were friends, and worst of all my family.
    I feel like there should have been a funeral because all I worked and lived for has died.

    I am trying to work on understanding these things and learning to live 30 mintues at a time. It's hard and it doesn't help to have the people closest to you to not understand. They tell me they do but they don't.

    Only when I found this board and read post like yours, I find someone that knows. I cry for you and for me and for everyone else that is confined to such a different life that we once had.

    I hope you understand that although we do not really know each other, we really do.

  10. 1sweetie

    1sweetie New Member

  11. marw

    marw New Member

    Oh, yes, I feel this way, too! The isolation is terrible!

    After I had to quit work, everything changed. One thing that seems so bad is not visiting my family. They live out of state. I used to see them 2 or 3 times a year...now I never see them, not in 4 years. THey never call. I call them, but it is not the same. I cry myself to sleep because I miss them so much. (This is my brother and nephew and their family, and my aunts and extended family. I do not have children, which did not bother me before, but now makes me feel even sadder.)

    1sweetie, I feel like you about this part, too. You said:
    "I feel like there should have been a funeral because all I worked and lived for has died." I feel exactly like that. I did a lot of Art work, writing, I taught dance and taught school as well, I felt I was really contributing to the world. This all seems like it died when I got this DD! I became so sad over this. I feel useless.

    I now live in the moment, or try. I cannot think about anything besides the very minute I am in. If my mind goes to something even an hour from now, I will pull it back, because I do not know an hour from now if I will be able to do that particular thing. It is like slipping through pools of mist. Going from one pool to the next...silently, and alone. I didn't live this way before. It is so difficult.

    I sympathize with everyone here who experiences these things. I was in even worse shape until I found this board. I didn't even know there were others like me, until then.

    Another thing is hard. My neighborhood changed, too. I like young people, but ALL OF THEM are young now in this neighborhood, so it is hard for me to form any lasting friendships. ANd finanacially, I cannot move.

    Perhaps I will try to have more sites to visit on the web. That sounds like a good suggestion.

    It feels to me like I never have enough energy to empower myself. If this makes sense? But I intend to keep on trying, as I do not know what else to do.

    Best wishes for us all, that we may find ways to deal with this dreadful disease.
  12. pirtpain

    pirtpain New Member

    I feel isolated alot!! If you are home alone all the time
    it becomes really lonely! It is also lonely if you have no friends. There is a posting tonite referring to homebound people that is informative. You should read it. It is also great to get on the board and talk to others. This has helped me alot. GOOD LUCK!

  13. rachel432

    rachel432 New Member

    even though i'm still able to work i also feel incredibly isolated. mostly i don't even tell people what i feel like because they don't understand and really i can't even expact them to. all i do is work four evenings a week and the rest of the time i sleep. i don't have the energy or feel good enough to go out to see my friends or family. i try to keep up with them through phone calls and emails but it isn't the same. my husband does his best to help and be there for me but i know he doesn't totally understand. he is in a band and i don't even feel good enough to go out and see him play most of the time which then just makes me feel guilty and worse about my situation. if it weren't for reading the posts on this board i would feel totally alone. thank you all for being out there!
  14. marw

    marw New Member


    I loved reading this post you addressed to me! It helps so much to know that someone else is experiencing almost the same thing as me!

    I, too, am a night owl (I tended to be that way before FM, but now I have a terrible time sleeping) so I am up also. I am getting a bit foggy by now, so I may write part of a post to you now, and more later. I was afraid if I don't answer some now, I might forget later.

    YOu can't know how much you helped my feelings, especially as regards my family. I do know what you mean, too. Even on the phone, no one asks how I feel, or if there is any progress with a cure, or anything they could do to help!! Oh, how I long to hear those words "Is there anything I can do to help?" Even if there weren't (and actually I almost always need help (with shopping or the house or something....even a little thing is helpful....if one of my friends thought to pick up something like a roll of paper towels, I would be estatic! Sounds weird, but with FM, we often cannot do something like this. I once lived with the lights burned out in both my kitchen and bath, because I could not get anyone to change the bulbs for me. I have since found a guy that I can pay to do this.) But my family, even being far away, could still do things, like call or send cards, or show an awareness. I know you will know what I mean. And they don't.

    I had to laugh about the part about them expecting us to be at every wedding, graduation, and so forth! Our friends, I mean. So very true. I had to go to the wedding for a friend's son last Fall, and I thought it would kill me, but I simply could not refuse to go....she would never have spoken to me again. I did not go to the reception, however, and she will just have to live with it. She says she sympathizes with my illness, but you can see that she does not understand it.

    About my pic, thank you for that lovely compliment! But oh, how I wish I could still have some of that "joire de vive" now. I'm trying to get someone to take some pics of me now, so everyone can see the "before" and "after" of Fibro.

    That perfectly says it about the new game everyday with new rules that no one tells us. I had never heard that, and it is so much the way this DD feels!

    Thanks, Eileen, for your post. I always get new hope when I hear from someone going through similar things as me. THe bond I feel with many people such as you on the support board is what gets me through a lot of times.

    I had better go and try to sleep. I hate trying to go to sleep, mostly because I hate how I feel when I wake up. But night comes every day, and nothing we can do about it! LOL

    Good-night, Eileen, and thank you!!

  15. libra55

    libra55 New Member

    and I'm glad to see I'm not the only one lays in bed and cries at night. Husband works night shift. I sleep with the DOG. He is the best. Hops right up there, curls up in the small of my back and stays there all night. Wakes me up in the morning with a gentle nudge of his nose. the other dog sleeps on the floor right next to us, too fat to get up on the bed! furbabies, ya gotta love 'em.