Extremely Alone

Discussion in 'Fibromyalgia Main Forum' started by daytrippersoul, Jun 11, 2008.

  1. daytrippersoul

    daytrippersoul New Member

    I feel extremely alone.After 9 years of FMS and whatever else STILL yet nobody understands. I read on how to explain FMS/CFS.... NO one wants to read it. They think I've "lost it". That I need to "go away". I'm crying right now. I feel people think I am being selfish. I'm tired of having no life.

    THanks for reading.HUgZ,

  2. TeaBisqit

    TeaBisqit Member

    I'm alone, too. And I always feel no one understands unless they have it. You haven't "lost it". And you have a right to be upset that you're sick.
  3. daytrippersoul

    daytrippersoul New Member

    Thank you. It just seems everyone around me is mad at me. WHY? Because I have a disease and cannot cope. I think I need pain meds and support. They don't understand that.

  4. msbsgblue

    msbsgblue Member

    Even though I have a wonderful husband, whom by the way I met on this board some years back and he has this too, I feel exactly the same way.

    My DH is extremely supportive since he goes through what I do every day. That said, I miss having a best friend or friends. I need girl talk if you know what I mean.

    I miss lunches out with friends, tea time at my house with one any given afternoon.

    I moved to WA 3 years ago, have not found anyone here to be friends with.

    My hubby likes to play competitive games with me online, we have 2 computers side by side, but I still feel isolated. He is always joking when he feels well, but it is not the same.

    I miss working. I miss the people contact as I am very social.
  5. daytrippersoul

    daytrippersoul New Member

    If I were closer I'd talk with ya. I am the same way. I used to have pep/energy..now there is nothing. My friends...yeap..disappeared since I became ill. And it is putting a strain on my relationship with my b/f of 5 years and my family as well. This sucks.

  6. lvjesus

    lvjesus Member

    It is very hurtful when people around us act like they are mad at us for being sick. Maybe they are just mad at the DD and not you, I don't know. I often feel like that with my husband. I think he gets frustrated with this too. I know he feels bad for me being sick, but it hurts when I come in and fall on the couch and he says, what's wrong with you? or "I guess you are dead now?" or sometimes he gets mad when I feel like doing something and makes comments about, if you are that tired, you ought to lay down. I think he might be getting it that laying down does not matter, I won't feel any better.
  7. caffey

    caffey New Member

    These diseases are awful and are so isolating. I find the longer it goes on the smaller my circle of friends becomes.I find I have to keep pushing to maintain relationships with some friends and like I said most of them of dropped off for whatever reasons. Fight for the good the relationships you have and be honest with your friends. I don't usually talk with my friends about because like you say they don't get it and most times I just want to talk about something else. Have you read the article on spoons. It is something someone posted. Maybe it will help you in your feelings and give some people a clue of what you go through. I have a wonderful girlfriend and last fall we after a yr. of planning were able to go away over night. She later said to me. I thought I knew what you go through each day until that trip and I had no idea how difficult it is for you to get through each day. Maybe you could grab a close friend and do that and see what happens.
    Sorry for babbling. Anyways you are not alone. There are lots of people to babble at. We don't have all the answers but we can listen.
    Hang in and don't give up.
  8. malony33

    malony33 New Member

    Daytripper, I wrote a reply to a message about this very topic recently. Same response from me: career is gone (retired on disability), friends are gone (no one calls, writes, visits; no social invitations), tired ALL the time and often sleeping, increase in pain lately as well as depression...and now I'm starting to feel guilty, too, BECAUSE...

    My DH, who has been supportive through almost 18 years of this, was on the phone with his son-in-law; I was asleep on the couch in the other room and his voice woke me. I could tell the conversation was about me, how our life has
    been affected, etc. My husband said some things that amounted to how alone he is and certain other dissatisfactions, and so on. He's certainly entitled, but I feel SOOOO bad.

    I don't blame him, but I never actually heard him say it, especially to someone outside the house. Kind of makes my marital problems, which neither of us addresses, more real. I have that empty, sick feeling in my stomach...just feel as if I've ruined his life, and I have. I'm worthless. The person I was is gone, and all I see is a future of more of the same, AND I'm getting worse.

    However,You are not alone and WE HERE all believe you, WE will pray for you, and when you post WE will talk to you.

    I sound miserable, but I'm taking my life 1 day at a time.
    The moments of happiness everyone has buoy me - last night my son was sworn in as a police officer in a FANTASTIC dept. - and come along just when the darkest of thoughts hit. God does this for me because He knows it works better than all the meds and MD's in the world. I have plenty of those!

    I never met you, but I love you because I GET you, I feel your suffering, and your losses are my losses, too.

    I hope tomorrow is a better day for all of us. God bless.

  9. poets

    poets Member

    I read your profile and it was just as I expected. The Beatles. My favorite band too. I've got every one of their records.

    I have a lot in common with you in other ways too. I know the frustration, weariness, and trying to get people to understand all this is impossible. They're so quick to accuse you of being lazy or not wanting to help out and things, and you can't get them to READ to find out WHY you're the way you are. And if you try to explain it to them they either change the subject or walk away.

    So I certainly understand you and everyone else who posted. There's a lot of us out here. Keep posting, we're here for you.

  10. daytrippersoul

    daytrippersoul New Member

    my bf just told me to lay down too.... wow...how weird.

  11. willas

    willas New Member

    As everyone else, I understand how you feel. I still work, but it takes all my energy most days & no one that I work with knows of my fm - I wouldn't dare let them know for fear of loosing my job. So, I put on my mask & go on. Only my daughters & a few close friends, (the couple I have left), know of my diagnosis. My daughters kind of understand since they both show symptoms themselves but friends really don't. In order to do anything I have to plan long in advance & take at least the next day, if not longer, to recover. Spontaneity has definitely been removed from my vocabulary - something I really miss.
    I often think of becoming involved in a relationship because I do miss the companionship but just as often think how grateful I am not to have the added stress. On a bad day, I can just come home & crawl into bed, not having to worry about interacting with someone or the guilt if they feel this isn't what they signed up for.
    While I am grateful for the energy I do have I still feel very alone....definitely feel alone. There's so much more that I want, that we all want. If I have to go through this, I would like for my life to make a difference, something I still haven't figured out. Besides the physical pain, there's this deep ache in my soul that's just relentless. But I don't have the energy to address it so I put my mask back on & go on, one day at a time, but alone.
  12. daytrippersoul

    daytrippersoul New Member

    I just cry and look pitiful. Change doctors they say. Why? To be honest...having this disease what I need is pain relief. I get jealous when I see people going for walks and being happy. I too am alone ..we all are. We can come on here and vent. My b/f said go to the ER..what AGAIN????? They'll say why haven't you called your doctor?? Same ol' story. "cuse me while I go get high.

    HUGZ 2 ALL OF U.... LUV U ALL.....I really do..and thanks for letting me write all of this. I really appreciate it.

    All you need is love...right?

  13. Empower

    Empower New Member

    I understand

    I was just sitting out on the back deck with my dog and thinking to myself, everyone is out doing something, and here I sit

    I am also in pain, fatigued, no - exhausted, depressed and anxious

    I only got ot the store and doctor's appointments too

    It is sad

    I have cried several times today

    Got a call from the very last traditional medical doctor that I will go to and guess what? My blood work is NORMAL

    HAH! Then why do I feel so awful???
  14. poets

    poets Member

    Love is all you need........;o)

  15. justmestephd

    justmestephd New Member

    I feel exactly the same way. I never felt so alone as I have lately. The same story goes for me all my friends have just disappeared. My husband only can understand so much. Its not a good life right now. My phyciatrist tells me to stop thinking of what I had and start thinking of my new life now. That is very hard when things used to be so different.

    I even had a friend who I met, well not really met, we exchanged emails and really poured out our soles to each other about how we feel and even she left me. Her life "got to busy" for me. We found out we had the same birthday and our hubbys did as well. IT was weird. LIke we were put together for a reason but she stopped emailing me. We emailed all the time then it started to get less and less. I would wait longer and longer for her to respond. I thought for sure I would always have her around.

    I really wish I knew what to do. I feel so so so alone. My husband works all the time, I hardly ever see him. He works 2 jobs because I can't work and of course waiting for my SSDI almost 3 years now. I just have so much sadness anymore and yes I do take antidepressants to (Cymbalta)

    I wish there was something to make us all better and go back to our lives the way they used to be. Or is there really a reason for all this? If there is I wish I knew what it was!
  16. Janalynn

    Janalynn New Member

    This is all so sad. I read it and am so sad. Then I realize, I'm part of it. This is me to a certain extent. It's like me looking in -feeling sorry for that girl sitting on the couch - the girl who is trying so hard to have a normal life, to put a smile on, to be supportive of others. It makes me want to cry.

    I can understand others not understanding. I do not understand people being mad at you. That is just ridiculous.

    I have an incredibly supportive family. No complaints there whatsoever. BUT..gosh, they've got to be sick of this. I'm sick of it. As much as they love and understand me, who wants to hear about this crap all the time. It IS very difficult to hear about others ailments, pains etc. when there is nothing you can do to help. I don't complain very much. Sometimes I can't help it and break down and cry - that's when they know something is wrong.

    People can 'think' you're being selfish all they want. You know the truth. Until they change their thoughts, they will not change their feelings. I truly hope they come to some realization of all that you are suffering with.

    I look like I have it together. I work part time. I get dressed nicely for work - do my hair and make- up. I can't tell you how many times I cry to myself - usually without warning. There is a lot to deal with - and I swear I've had a tougher time mentally/emotionally than I ever anticipated.

    Except for work, I rarely see people. The time that I do have any energy, I have too many other things to take care of - spending time w/my kids/husband, taking care of the piles of things around the house etc. or simply enjoying a quiet evening on the patio.

    If anything I'm a phone friend and even then I'm finding I don't feel like talking. Sometimes I just can't. I have a feeling some people probably don't want to talk to me either - even though I NEVER bring up my fibro. I'm probably fairly boring. I also am the one that always supports others, so when I don't have the energy, maybe they don't have much use for me. It's a hard realization.

    My best friend said to me one day after calling (and my husband said I was resting)"first of all, you nap more than anyone I know". I was crushed. For the record, I wasn't napping, I was resting my weary legs. Secondly, even she doesn't get it. I lost a lot of faith.

    The main thing I'm trying to do is be my own best friend. Sounds silly, but if you really think about it, there is quite a bit involved. I'm trying to remember to do for myself what I would tell others to do. I'm failing miserably some days. Some days I'm doing okay at it. I really am a great person. I love who I am, who I've become, what I believe in, what I stand for. I refuse to let this DD change any of that. I cannot become bitter. Anger is okay - for a while, it's part of the process.

    Rambling is apparently another part. LOL!!! Sorry about that.
    You're not alone, please remember that. When you're laying there (as we're all told to do by our bfs or husbands one time or another), remember one of us at that very moment is probably doing the exact same thing, with the same feelings. It gives me some solace.
  17. Hugs to you. I know having this disease takes part of your life away it seems. I feel alone even though I have family around me. Sometimes when I see others who look "normal" park in handicap parking I want to ask them "do you have fibro" but don't as it is private. But I know no one who has this dd , other than my sis in law who I sincerely doubt she has it (copy cat)

    Hang in there.
  18. msbsgblue

    msbsgblue Member

    You know my folks took 4 week vacations and I saw most of the U.S. but many years ago I thought how there is a whole world out there and so many wonderful things to see and experience and I wanted to do them.

    I guess I get to visit via computer now.

    Hugs to all
  19. Honora88

    Honora88 Member

    I'm so sorry to hear that. I've been depressed and crying all day too! i'm not getting the basic understanding.

    Have you ever heard of angel therapy by Doreen virtue?

    I leave hayhouseradio.com on all day to bring my spirits up. Hey, I'm desparate for anything that will make me feel better.

    LISALOO New Member

    Sorry for your feelings I have the same. I thought I understood chronic illness, but I would have never known unless I'm became sick. Now I understand. So I know that knowone will understand except for those with the disease, even those closest to us.

    Don't worry what other people think, it's not worth it making yourself sick over.
    [This Message was Edited on 06/15/2008]