Lonely Disease - Warning - Self PIty Party

Discussion in 'Fibromyalgia Main Forum' started by Empower, Nov 4, 2005.

  1. Empower

    Empower New Member

    It is such a beautiful day here....our Indian Summer I suppose.

    Everyone is out walking, riding bikes, running etc.

    I am feeling very bad for myself today. Don't do this often, but it seems on days where it is so beautiful and so much to do, I really fall apart, because I want to be a part of it.

    Friends say they care and understand, but they don't. Husband definitely doesn't understand. They are not calling me and saying, "I know you can't do much, so lets go somewhere and sit and have a cup of COffee" It is more like, "hey, let's go to the mall, even though I have told them a hundred times, "I don't do malls"

    I spend most weekends by myself, because my husband doesn't want to "sit at home with me", so I spend alot of time on the computer.

    Sorry, just had to vent. Hope you enjoy your weekend
  2. Angel6801

    Angel6801 New Member

    It is okay that you vented. We all need to. No one really doesn't understand it unless they are in our shoes. Hope you can get through this okay. Take care.
  3. Tigger57

    Tigger57 New Member

    There are a lot of us who feel like you do. I don't have a husband or kids, so my time alone is pretty much all the time; except at that new job that I hate.

    You are so right too, people just don't understand. I know what you mean about sitting down and having a cup of coffe. It would be nice if someone would just say let's go out for a cup of coffee.

    I don't do malls either. I haven't in years... long before I was every diagnosed with fibro, CFS, and now possibly Lupus. Even when I was younger malls bothered me. I think I get overstimulated between the people, the lighting, the noise the movement... all of that gets to me and then I end up having a panic attack and have to leave.

    Wish you were here, I'd go for coffee with you.
  4. PepperGirl52

    PepperGirl52 New Member

    I bet you most of us are sitting here reading your post and nodding our heads. BECAUSE, we are doing exactly what you are doing today-spending it ALONE!

    I know I am. Hubby is at a meeting, and probably won't be home until later this afternoon. So, it's like all the other days. Alone, just the dog and me, trying to figure out what to do that isn't going to bite me now and bite me later!!

    Go ahead and have your pity party. Invite as many of us as you care to, THEN, pick yourself up and read a good book, take a nice warm bubble bath, pour yourself a glass of red wine, and toast to YOU and who you are in spite of this ugly disease!!! You are SPECIAL! Don't let anyone take that away from you!! PG
  5. pinkstar

    pinkstar New Member

    i am almost 21 and i went from having tons of friends, promoting for clubs in nyc... to a lump of poo.

    i also moved to pa for school and don't know anyone out here. it is so rare that i go out to something not school and not a doctor's visit. it's hard to make friends when you can't dance, can't party, can't smoke, and can't drink.. not that i want to smoke or drink these days anyways... but i would do anything to be able just to go out to a club again one night and dance the night away like i used to...

    i flippin hate malls. so boring. i'm poor so why bother going?! just to walk around and stare and then ache later.. pfffttt..

    i suggest you get out on your own. go to a little cafe and have a cup of coffee outside.. sometimes it is nice to be outside and be alone.. regain your thoughts.. i would have a serious talk with your husband about his attitude. he should support you, not abandon you! i know it is hard for them to comprehend things sometimes, but try to let him in on this.. he's a part of your life and should stay that way. don't let him be part of the disease.

  6. ontariogirl

    ontariogirl New Member

    I just had to give up the one last "outside the house" entertainment I enjoyed due to chemical sensitivites.

    My hubby went out the next night with his work crew for dinner and a hockey game. I wanted him to go and enjoy himselt but at the same time I will admit to being a bit jealous. I know he felt guilty about going which isn't fair to him.

    I just want a life back outside these 4 walls...
  7. fivesue

    fivesue New Member

    I am sorry...! I was just thinking today how my world has shrunk. I hardly ever go shop thrift stores anymore, and that was one of my last outside activities to go. Mostly I'm here.

    I'm hoping you feel better expressing yourself. Please never apologize for venting or even feeling sorry for yourself. You can do that once in a while. So, head up, and let's meet this day, whatever it brings.

    You are such a supportive and kind person. I do hope the day goes well for you.


  8. Bambi

    Bambi New Member

    alone and you die alone". I didn't see what the heck they meant. You were born hopefully to a mother that was waiting for you and wanted you. You grew up, married and had children and even if you lost your mate, your children would be there for you when your time to die came. Now I know what they meant.

    I look back on the last 20 years of my life and I can't even remember where it went. I wasn't severe with the Fibro the whole time, but I moved back to the city when I prefer and wanted to live in the country. I quit driving because of so much traffic and so many people. I don't like the malls either because of the distances from one place to the next and the crowds and lights bother me. We live in the Phoenix area so for about 9 months of the year I can't bear the heat.

    I made friends from neighbors along the way and eventually eliminated all but those that I knew I could count on and that I truly cared about. My dad died and my mother moved back here to be near me she said.

    Then the FM got severe in about 1995.
    In 1997 my mom found out she had cancer of the every thing and died 21 days later. That same year every one
    of my friends except one that lives out of state, got one bad thing or another and all died suddenly and unexpectedly. My out of state friend who used to come with her husband and spend from a weekend to a week got worse with her health (and she can't stand my pets) and can't come any more. I have some online friends and one cousin that I email with. But noone in person.

    My husband has to work so I'm alone 8 to 10 hours a day during the week. He has Diabetes 2 and a genetic back problem that cause a lot of pain also. When he's home he does a few things that have to be done and then spends a great deal of the time asleep in his chair. On weekends he does things to the house and then sleeps. If possible he finds things to do outside as a preference.

    I have lots of pets but although they are fun and my entertainment and company, they are also a lot of work.
    Some days it's all I can do to keep up after them to keep bedding, puppy papers, a path for us, my bedding, bathroom etc clean enough to use.

    I have NO neighbors that are more than "hi" aquaintances sp?. I won't ask anyone in because due to a move that didn't go through the house is
    piled with packed boxes and things out of place that we haven't had the
    time, energy or pain free enough time
    to get sorted and put back away.

    I don't even see my mailman. My daugher is married, works nights and
    has severe FM also. She's been severe for going on 3 years and is trying to
    make a little less than 3 more years on her job to qualify for a pension.
    She comes over with her husband when she feels well enough and has time. Not often.

    I keep telling myself I am going to get fixed up and go to the senior center (I'm 57) in a cab. But I know by the time I do my hair, get a bath,
    get dressed and go I'll be exhausted.
    I hate going into a place where everyone knows everyone like the senior centers anyway. Eventually I'd
    meet some one I liked maybe but maybe
    not. Once people hear you have a chronic pain problem or that you can't get out much they don't want to
    get involved.

    OT I guess but my biggest fear has always been ending up in a rest home when I get too old or unable to take care of myself and alone. I've told my daughter that for years. She's NOT well, but has and wants no children. She has a new 4 bedroom home. I made the stupid mistake of outright asking her recently about the rest home thing. She said "I can't even take care of myself!".

    Another time I asked her if she would come over for an hour a month, alone, and watch a movie with me, play a game, do a craft or just talk. I always see them as a couple and I miss being with her alone..she is our only child and for years it was me and her. She said to that "I don't like staying in the house. I like going out and doing things. When I have days off I have chores to do if I feel well enough. I don't like to go anywhere without my husband.". I didn't argue it (what good would it do!). So I cried. Same thing I did after the rest home question.

    Some people say they don't want to be
    a "burden" to their kids. I can SEE
    that and I understand it, but somehow I didn't see my mom as a burden. I wanted to spend time with her and when she got sick I wanted to take care of her. It's what families used to do, it's what the bible says we should do and I can't help it it's what I hoped my daughter would feel for me when the time came. I've always been emotionally "fragile" I guess. I've seen what happened to my grandmother and other friends who were pawned off on those places and even though they were "nice" ones it
    wasn't pretty.

    So you aren't alone. Today I am also
    feeling down and lonely and maybe a little depressed about the way my life is going. BUT, tomorrow is another day and things will seem brighter and less difficult maybe. HOPEfully. We have to keep hoping! I agree on going to go get coffee alone and maybe someone will start a conversation. I talk to people in stores all the time when I can get out..it's not the same as a friend or your child..but it's someone talking back. As much as I love my pets the one sided conversations do get tiresome too. Hang in there, and come here when there's nowhere else to go or just because!
    [This Message was Edited on 11/05/2005]
  9. Empower

    Empower New Member

    Thanks to all your kind words. Seems like unfortunately we are all in the same boat.

    I did venture out today, but it was very tough, but good to be out.

    I am now pretty exhausted, so must go rest!

    Cheers to all of you and try to enjoy the rest of the weekend