anyone as lonely as me?

Discussion in 'Fibromyalgia Main Forum' started by homesheba, Jul 19, 2008.

  1. homesheba

    homesheba New Member

    ok i dont mean to sound 'whiney'.
    and i do have friends,
    but since No one can comprehend this-
    except one and she is ,i think even worse off than me,
    i am home alot and go places by myself when i am able cause
    its too much trouble to be with someone else
    and be stuck someplace when i feel like i am dying
    and they want to keep going
    and i want to come home and go back to bed...

    and even with being married-
    we also dont do anything together-
    and i just am plain lonely feeling.
    i feel like my mind is acting wierd lately.
    health wise-
    i have fibro- cfs, d.d, crohns, hep-c,
    hypertention, poly-mygratory arthritis,
    and i kid you not-
    i cant even remember it all....
  2. Yes this dd seems to do that to people. I wish I could go out more but the pain I have limits me. I also have no friends other than my sister and sis in law. But they have no clue about fibro (well my sis in law says she has it too) NOT! So I hear you, I keep thinking to myself what kind of life is this, living in pain . So no your not alone.
  3. SpecialK82

    SpecialK82 New Member

    Yes it can be a very lonely feeling, you don't have the energy to make new friends or even keep a relationship active. Like you said, sometimes it's too difficult for other people to understand your limits so I tend to not even go out so that I don't have to constantly explain myself. I feel also that people may think that I am making up excuses instead of really being sick and that can get very depressing.

    Thank God we have each other - I'm so grateful to talk to others that understand!

    Make sure to plan nice things to do for yourself - maybe take a long bath, get a massage, get a manicure, etc.

    I am praying for all of us. Hopefully soon we will have some medical break-throughs that will allow us to live our lives again.


  4. clerty

    clerty New Member

    I hear you and I understand YES I do feel like this a lot like the room might be full of people but I feel so lonley
    life sucks at times I went through a real dark period between last summer until about Febuary things are a bit better for now as I am doing my own research and while I have not been diagnoseed with Lyme I am sure I have it I am responding well to Colliodol silver I also have CFS and Fibro. I also have a fab shrink who I see once a week he has helped me with stress.have you tried CS? give it a go what have you got to loose it has given me a life back I now go out to the movies I can cut the grass and I am smiling !I dont think It is a miricle cure but It has made life better for me.


  5. otis89

    otis89 New Member

    homesheba, Im going through the whole thing myself, nobody understands except everyone on here how lonely and at times, desperate for someone to listen and show compassion and understanding to what we are going through, we are all in the dark ourselves, as far as coping with all the symptoms of this dreaded illness, i feel like a leper most of the time, as many times as i try to pretend im "normal", well, it just never happens, and being stuck someplace when you feel like your dying, you nailed it right there, because thats exactly how i feel, my husband and his family can be downright cruel and mean, causing me a spiral into depression. Hugs to you. otis89
  6. akandmk

    akandmk New Member

    I get that lonely feeling alot too. I'm married and I am starting to think that when i get that feeling the stupid depression is coming.
    I have one friend but she lives 2000 miles away. So most of the time I am here with my kids and waiting for my husband to come home. We do everything together. My fibrofog is getting worse and I thank him everyday because he is a tremendous help to me.
    I didn't know how hard it is to be around other family memebers that just don't get it until last month when my mom came here for a visit. She kept having to slow down because of my pain and fatigue and of course she still just doesn't get it. She just got something from the mayo clinic about fatigue and vitamin d. It said something about needind to take 400 units to 800 units. I take my complete vitamin (among all the other pills i have to take now) every morning and it has 400 units. I told her this and she said well take more, as if that is going to cure my FM. I've begged her to read up on this but it seems that isn't going to happen.
    Sorry about your feeling so loney sweety. Keep posting here.
  7. Leaknits

    Leaknits New Member


    OMG YES. One of the many hard parts of being sick with this mess/these messes is that the few people we can stand (I'm serious about that "Can stand") tend to stop phoning, visiting, asking if we want to go somewhere because 1) when a lot of us are trying for sleep the phone bells are off, answering machines have been dumped so that we won't feel as if we HAVE to respond to the calls right away 2) the
    "Please do not knock...I'm sick and trying to sleep" notes taped seemingly permanently to our doors, 3) it seems ever so that when friends want us to go somewhere, the somewhere is hours away or involves being away from home for hours, same thing I suppose, and I've had people explode into anger about "You never want to go anywhere with me!"

    Actually the "You never" folks don't really get heard; my ears turn off when someone says "You never" or "You always" anything.
    The few times I've really listened to a whole tirade about "never" or "always," the response from me has been something along the lines of "Don't like it? The door's that-a-way. Use it."
    Which of course cuts another person out of our ever-dwindling circle of friends or causes friend to be demoted to acquaintance and it's VERY hard for an acquaintance to be re-admitted as friend. Usually doesn't work, because semi-friend will say or do something that stomps on that last good nerve we were treasuring and there they go again, back into acquaintance level.

    It seems that no one "Gets it" about this d'd unless they have it themselves, and if they do have it they're in the same leaky boat we are.
    I suspect that's why so many of us become more attached to e-friends and message board friends we've never met in person, than we do to F I B (Friends In Bodies).

    Yes, okay, e-friends and board friends have bodies; I didn't mean to imply they don't. What I was trying for was they are not visible.

    F I B's aren't always as supportive as we wish they could be; for instance a F I B who got handed a copy of the Letter To Those Without CFIDS (it's old, therefore no mention of M E) grabbed onto one bleeping sentence that said something about "Please don't insist I try something you have heard works miracles for us..." That's a really bad attempt at remembering what the sentence actually said but it's as close as I can get.
    Anyway the F I B got all snitty about "Well if there's something that will help why don't you want to hear about it? You want to stay sick?"

    Sigh..."The door's that-a-way." Scratch one F I B, add one to acquaintances. Hang it all, that hurts!!

    A couple of very dear e-friends (and if they're reading this they knew who I'm talking about) and I have hashed over "Let's set up a community of Just Us Who Have This" but we mostly decided it's too much work and we need to go nap instead.

    Just yesterday an e-friend phoned and we got to talking about how little we can do regarding The Outside World. I told her I agreed and that my "social whirl" consists of one or two dr appts in a month and maybe 3 or so dashes to store because there's a sudden lack of edibles in the house.
    That's NOT a life.

    H-sheba, I swear I didn't mean to hijack your post with my maunderings.

    I do hear you about being lonely; your post reads like a prose poem and I'm wondering if it would be okay with you if I printed it out and stuck it on the wall here.
    I don't know what a person who's ill and lonely can do about it.
    Maybe that's why so many of us have pets.

    My cats understand that CatMom here needs to sleep at what The World calls odd times. They also know when I'm weepy or sad or angry; both insist on trying to fit onto my lap at the same time.

    Lol, sometimes I say they empath and are trying to help; other times the dark side shows up first and says "Ha! They are just trying to make sure they are going to go on getting food and water and shelter."
    Whichever, I'll accept a cat-cuddle anytime.

    Like now. It's nap time. Come on, cats.

  8. p8tience

    p8tience New Member

    I don't know what happen to my last post but I'm going to try this again.

    This is my first time posting, but I've been on this site for quite some time. I was diagnosed in with fm, ibs, ddd, non-epeliptic seizures (they say that they are anxiety-based), and a host of other illnesses.

    I know how you feel about being lonely. I have become more isolated due to the pain and fatigue.

    I had an eye appt. last Friday but had to leave the office because I was too exhausted to wait. I saw a movie with a friend later that evening, but had to be led to the car and my bed because I was sick from the loud sound in the theather.

    Before I read your post, I was thinking about how lonely I am at this momemt. I feel like the world is passing me by while I am dying a slow and agonizing life. I don't always feel like this. I have people who love me and try to understand what I'm going through.

    Thank you for your post. You spoke to me today. You inspired me to post for the first time. We are not alone in this fight, although we may feel like it. This will not be my last post.

  9. Bunchy

    Bunchy Member

    Very lonely here too.

    There is someone on here caled "hermitlady" - if that username wasn't already taken, I'm sure most of us could use it..LOL!

    Lea - GREAT POST! Funny and sad at the same time - I want my DH to read that.

    I'm sorry to say, homesheba that so many of us with these DD's are forced to live a life of what feels like involuntary "solitary confinement".

    I can so relate to what everyone has written on this thread.

    I'm even scared to ask for e-friends here just in case I am rejected - that's how much confidence I have now and how worthless I feel as a friend.

    Please know you are not alone and we totally understand and are here for you.

    Love bunchy x
  10. Chelz

    Chelz New Member

    Your post caught my eye because lately I have been feeling very lonely. Actually, I have feel lonley a lot, but lately it's worse.

    With chronic pain, fatigue, weight problems because of past medications, unable to exercise and working a full time job, taking care of my mother since my dad passed away, leaves me very little time, patience and motivation to do anything. This creates lonliness.

    I do have some very good meaning friends, but they still lack the understanding of this condition. They will say to me, "Well, you would be in pain anyway, so just do what we all do". What kind of statement is that? So, obviously non one except all of you on this board can truly understand.

    As I am posting this, I have an ice pack on my hip, will soon put it on my knees, yesterday had a killer headache because of the heat out here, and am feeling shaky and weak.

    How are we supposed to feel motivated to "just go do things with our friends, doesn't happen. So, I do feel your lonliness wish I could chase it away, but my knees wouldn't get us that far, LOL. Tak care of yourself. Hugs Chelz.
  11. Bunchy

    Bunchy Member

    Thanks for the compliment but things aren't always what they seem on the outside....

    Just after that picture was taken I had what I now think was a nervous breakdown. I have been struggling with bouts of severe depression and anxiety ever since.

    DH isn't always supportive, my family (except for my sister) treat me like an alien and don't even acknowledge my illness which can be very humiliating when I am in difficulties in front of them and I have been through too much in my life even excluding the DD's.

    I hope to find peace with it all some day as you seem to have done....maybe when I am older...LOL :)

    Love Bunchy x

  12. homesheba

    homesheba New Member

    it is all so true, my mom just passed away the 28th of sept and it still haunts me, just me and her- here in the bedroom and she went off to heaven with me holding her hand at 3 am...,
    she'd just turned 80.
    i didnt realise that she was 'so here' for me , when others wernt.
    how i miss her now,
    even tho i seemed to get so iritated at her for things, it was really' the little girl' in me not wanting to believe that 'mommy' was old
    and having to leave.
    i didnt want to let her go-
    and my fear turned to anger deep down inside..
    not that i mean that i was mean to her,
    it was just a internal thingie happening.
    anyway im rambling that she was my friend that i still wish i had...
    i also feel closer to you all than my fib
    (i love that!)
    cause you all are always here
    and seem so sweet!!
    are people just NICER on the web?:)
    God bless each of you.
  13. Chelz

    Chelz New Member

    Your post made me cry. It has been exactly 2 months ago today my father passed away in my parents bedroom probably from a massive heart attack, he died in my moms arms, just the way he would have wanted to. He was 79.

    Now, it's my mom and me. I have been under so much stress from this, my fibro and taking care of my mom. There were times when I would snap at her, then cry because she needs me so much right now.

    I am still numb from this and can't believe my dad is gone. Hopefully, he moved on to a better place just like your mom. God Bless you too. Hugs, Chelz.

  14. lrning2cope

    lrning2cope New Member

    My daughter is my only friend. I feel bad about this because she is 20 and she wanted to go away to college but went to the community college because of lack of money from battling this stupid medical stuff , plus , I can't do anything without her.

    I really don't know what I will do when she does leave. I am scared . I don't want to hold her back though. She has to have her own life. I keep thinking it would be nice to be married again , but is that fair to expect someone to marry a person who can't give back much ?

    My church family helps , but they sometimes seem weary of helping too. I really need a person who is in my life day to day . I don't have money for a helper , and even then , a helper is not the same as family. I am so lonely too , but I keep wondering if I am being selfish to ask someone to be my friend or family and then burden them with so much. Still I sure wish it would happen.

    I would be bored.overwhelmed myself if I had to be around someone with so many medical problems. What could I ever give back that would be worth it for someone to stick around?

    I'm rambling , but yes , I understand loneliness very much.

  15. MsBrandywine

    MsBrandywine Member

    Since being back home .. and right now with my car not daring to drive very far.. Im alone all day for the most part. unless I take a short drive to Walmart.. Sometimes I do that just to get out with ppl .. but then.. with the anxiety.. sometimes I really have to force myself to go.. But I know if I stay here at home for long periods.. then I get fearful of going out . the more I make myself go.. the easier it is.. most of the time.. but there are times.. When I am feeling so lousy that im here and feel terribly lonely and just cry..
    Its like most of my friends that I had.. I put myself out there but they dont seem to be real interested in trying to keep any kind of relationship going.. I guess because they're married and Im like the 3rd wheel or something..
    Its a very sad thing to feel so lost and alone AND lonely!
  16. Pennygirl2

    Pennygirl2 New Member

    I feel exactly what you all feel. I liked the reference to feeling like a leper. I had called myself an alien, but leper shows the rejection we get.

    I don't go out of the house much either and all family is far away in time and space. My daughter calls every week but I haven't seen her in almost 6 yrs. Long story.

    I am losing friends too. Partly because when I get depressed I am just unable to reach out to the couple ones I have and one is too busy and other too sick to reach out to me.

    I have husband, but it was more of a partnership as he is pretty emotionally stingy. Just learned that term and find it really applies. He is on dialysis and One day seems fine and one day seems like he could be at end. It is a roller coaster which is going to get much worse.

    I appreciate all of your replys to show us we are not alone. I don't even have email friends, can't seem to connect with anyone. But I try not to give up as you all do and I pat you on back for the really great way you are coping with these horrid illnesses even if you don't realize it. Hugs, Penny
  17. MsBrandywine

    MsBrandywine Member

    I hear ya.. I don't reach out like I used to either.. I have tried and thats all I can do.. if they don't want my friendship.. then I guess Im better off alone.
    I live in a small mobile home park and then today was my 55th birthday.. I went to the Post office and on the way back in.. I stopped out in front of the one womans trailer when I saw her.. just to try to talk and be around others..

    Ive had calls .. from my kids and my ex sister inlaw that has ms.. we've stayed best friends now for over 35 yrs..
    but my own brothers and sisters dont ever call to wish me a happy birthday anytime at all. Ive gotten now, after all of these yrs so not to expect it. They very rarely call me anytime.. let alone on my birthday..

    My Mom and StepMom called .. My Mom Bless her soul at 75.. still rides daily with my Stepdad in his big rig truck.. I dont know how she does it but she does..! and she hasnt been feeling good either.. She has fibro too. said this weekend if they get a day off was going to take me out to dinner....

    I did cook me a small roast beef today and had a half a baked potato and cooked up some fresh carrots and broccoli in the microwave.. Then around 8 I drove up to the ice cream place about a half a mile away. and bought my self a kids ice cream cone.. lol.. so.. I treated myself.. So Ive been home alone and just did for myself.. happy birthday to me.. They say we have and need to love ourselves and Im trying to work on that..

    [This Message was Edited on 07/21/2008]
  18. jmq

    jmq New Member

    I just wanted you to know that we all know exactly how you feel. I am glad you are here and have found this board. It reminds all of us that we are NOT crazy...and yes, many here are lonely...or angry....or depressed...or all of the above!

    Just reach out and we will be here for you to talk to.

  19. marti_zavala

    marti_zavala Member

    Hi homesheba,
    Yeah, I'm with you.

    I could have written your post.

  20. Honora88

    Honora88 Member

    But as a result I have grown very deeply in many ways. It allows me time for deep introspection and to get to know myself better and to be my own friend.

    It sure can be painful though and at times unbearable.