Any Other's Here ALONE????

Discussion in 'Fibromyalgia Main Forum' started by onecangomad, Mar 13, 2003.

  1. onecangomad

    onecangomad New Member there anyone else on this board living in isolation with this illness????

    I don't mean FEELING isolated......I mean physically ALONE, no one else in your life to help you in any way????

    I would really like to find someone else going through what I am.
    We all share the illness....but I would love to speak to someone else who is their own sole caretaker.


  2. rabbitstoo

    rabbitstoo New Member

    I can certainly say I am my own sole caretaker. My parents are deceased and I spent over 5 years as their caregiver. My theory is that the constant stress of caring for elderly, invalid parents with no help from siblings was what really gave Fibromyalgia a chance to take over my life. I am now estranged from my siblings with no contact with my two brothers who live here locally, and minimum contact with my two sisters who live elsewhere. I work full time as a receptionist, but was unemployed for 8 months until January when I started a new job. During my unemployment I lived with a roommate and her 16 year old son but my roommate and her son certainly did not have any part in helping me. I considered seeking disability while I was unemployed and even had the appointment but cancelled and ultimately came back to work.

    My best friend, who I relied on for so much of my emotional support, passed away a year ago from a brain tumor. I helped take care of her the last four months of her life. She was my closest friend and more like family than my own family. Her passing has left a big hole in my life.

    I moved into a one-bedroom apartment in February of this year and it is the first time I have lived alone for 11 years. I was taking 4 medications for depression and fibromyalgia when I was working but was unable to have insurance while on unemployment (COBRA was too expensive). So, I have been without my medication for 10 months (I have to be at this new job for 90 days before I get insurance) and I have really had to push myself just to get here to work every day. I can really relate to anyone who says that if you have fibromyalgia and you work, that is all you do and all you get done. I still haven't totally unpacked from my move on February 1st but I get a little (very little) done gradually. I have really learned my limitations since I am the only one there to get anything done and I don't want to totally disable myself for days at a time by doing too much. I was able to do that when I was unemployed because I could rest and recharge but I'm unable to do that now. My 90 day anniversary is coming up on April 1st and I am so looking forward to being able to get my medications back. It has certainly been a struggle financially, emotionally and physically.

    Well, I have rambled on here and that is probably more information than you were looking for. [This Message was Edited on 03/13/2003]
  3. kerrymygirl

    kerrymygirl New Member

    Hi, and yes I do understand and feel the same way I read a couple of your posts. I feel so isolated at times my kids are in other states and really are almost angry at me, I guess because I`m not the active fun loving mom I used to be. Also that I can not do for them. It takes everything I have to take care of myself and my place. Money is also another worry I have tapped into almost all my savings to live. I have lost most of my friends,recently my dad and best friend died. They were the only ones I felt I could count on. Even though I took care of my friend she was there emotionally even though she was old she also got f.m. late in life. My daughter flipped out when my dad died and has pretty much cut us all off. There are days on end I do not even talk. I live in a condo and every one pretty much keeps to themselves. Except as soon as I get to know someone they move. My other best buddy moved. I think sometimes how much I miss the human touch. My x stalked me for 8 yrs. and is out living the good life,makes you wonder he was the one who did so many terrible things in his life I kept my nose clean,and here I am. I drove into my complex the other day so fatigued from just shopping and in pain, I thought this is my life I moved to fl. 10 yrs. ago with so many plans. I have not been able to do 1. I hate it and I don`t know who wouldn`t. I was a very social person I still want to, so it is not depression it is I just can not make plans. So how can you keep friends. Yesterday 1st time in weeks I had a few good hrs. Not Great,but I was so happy I just thought if I could just keep this good I could get a life. I hate being alone. So yes, I do feel for you, when I get out and talk to another human I sound like the old people here I go on.There are some pluses thow I can moan all I need to. No one keeps asking what is wrong with you? I can do what I want as far as the stupid way I have to live now. I can not have pets but I do watch the water and all the wild life that keeps me going some days. I was depressed when I was being stalked and there is a big difference. This is do to pain and illness every single day and the lonliness that comes with it. I do take my meds now it is the only way I get things done,fought it for yrs. I do all my own repair too. I can not take antidepressants tried many, like elavil made me crawl the walls and others. Or flat line or sicker. So I figured that is not what I need. I need some one who cares, I mean really cares, like you. I pat myself on the back when I complete a project or help another human,I try volunteer but lately I have not been able to drive do to hands,and arms. It is sad watching life pass us by, the old people here can do so much more than me, golf,make plans etc. I live on golf course they are out 8am.I could no more be doing that than swim the channel.I used to be a athlete,whitewater,horses,tennis,skiing,you name it. So do not feel alone as far as you are the only one,I know there are others like us. I do say no more, even when I am writing my gratitude list. We do not live in a world that can handle long term stuff. Everyone wants a quick fix. So I wish at times if I had to have this it would have been when neighbors were there and family. Now everyone seems to be doing there own THING whatever that thing is. People rally for short periods and then go on. So where do you live and tell me alittle about you......MY HUGsssss....
  4. onecangomad

    onecangomad New Member

    I have now twice written a long response to your very welcome posts sharing with you my own story.
    I have now twice lost all I had written due to first a glitch here on the board, and then to getting bumped offline by my ISP.

    I know you will understand that I need to recoup a bit before I can start the third shoulders are on fire.
    Just wanted to post back so you wouldn't think I didn't appreciate you responding.

    Will try again a little later.
    Don't go anywhere! (bad humor attempt)

  5. pinkquartz

    pinkquartz New Member

    did you see my reply tacked on to your other thread onecangomad?
  6. NewEnglander

    NewEnglander New Member

  7. teach6

    teach6 New Member

    I don't live alone, though. My mom and I bought a house together shortly before I became too ill to work. She's 92, so she's not much help around the house, and our relationship is sometimes a bit tenuous, but I'm not alone. My 23 year old son is also living with us while he gets back on his feet and learns to live with a chronic illness himself.

    I'm the one who does the shopping, driving, etc. I am having a really hard time convincing my mom to find other methods of transportation to get her to some of her appointments. I have told her repeatedly that I cannot take her to physical therapy because it is a long walk, even from the closest handicapped places, assuming they are available. I also don't need to be sitting in the waiting room for the entire time she's there. I keep telling her to do like a friend of hers and call a cab. She just won't do it.

    Actually, when I was alone I liked being able to do things when I wanted and how I wanted without having to worry about what others thought. Now I frequently escape upstairs where my office and bedroom are so I can have some peace and quiet.

    We have a cleaning service that comes every two weeks and that is good enough for me. At least I don't have young children making messes everywhere any more. We also have all our yard work done by our homeowners association, so that is a big relief.

  8. onecangomad

    onecangomad New Member

    I understand that one can be married and feel isolated.
    I did for quite a few years.
    I was only speaking of/to a different form of isolation.
    The one where that person you thought wasn't giving you much is suddenly gone, and you realize how alone you weren't no matter how you felt at the time.
    I wouldn't have my X back now for all the whatever.....but there is a profound difference between living where no other human being ever treads, or coughs, or comes home, or drinks up your juice, or pisses you off for that matter, and the luxury of wishing the person you live with gave more attention.
    I didn't mean for this thread to be isolating....just seeking others who know this particular experience.

  9. onecangomad

    onecangomad New Member

    I just went there and read it Pink :)

    I have learned a good lesson here.
    Never start two seperate threads.......lololololol.
  10. kats1978

    kats1978 New Member

    i know when i am alone it is very hard for me to see the things that I want to see. it is also very hard for me to get up in the morning. Latly what I have found out that helps to get me up is to get my mother to wake me up, she only normally has to tell me once and I am up and out the door.
  11. onecangomad

    onecangomad New Member

    Ok...I am trying again.

    My life was crazy great...I had my problems...but who didn't?
    I was the singer/songwriter for my own rock band, and tended bar at all the hot places...a regular local star!
    I was awarded DC's Top Female Rock Vocalist 3 yrs running, and my band won 2 of those years as well for Best Band.
    I found a lump in my breast in 1994.
    Surgery, chemo, radiation.
    During chemo the nightmare I am still living began...only there was no name, and most believed I was just trying to cling to the sympathy I was getting by being sick....or get drugs....or avoid work...or whatever.
    I was diagnosed in 1996 as FM/CFS....the same year my band finally fell apart thanks to my illness, and the growing problems between myself and lead guitar live in (11 years we were together).....whatever you call a guy you live with that long.
    I'm skipping the pain, and agony, and being doped up on crap that made me gain 60 lbs cuz' I imagine you all know it is in there.....and it was HORRIBLE!
    We were dead poor as I had been the major moneymaker, and I was overweight, and moody, and just lost.....also going through Menopause at 39 (thanx chemo) with no HRT (thanx breast cancer).wasn't helping...nor was living with someone who now treated me as a liability.
    I of course accepted an offer to move to Prague, and manage two bars of which I would become a % owner knowing I wasn't up to it physically but desparate to make a new life, and start again.
    Of course I took along the boyfriend guitar player so we could start a new band, and play music happily ever after.
    The club deal never went through but I ended up tending bar in a language I didn't understand working with people who hated me...(the American who was supposed to be taking over)....with my hands in icy water, in an Eastern European cold, damp, dark, a 13th Century stone building with no heat to speak of....which let me tell you is BRUTAL on FM!
    The boyfriend partied on. :)
    One night I took a colleagues laptop home for him on the tram so he could go on drinking at the one knew I had serous Osteoporosis from the chemo/early menopause....and so I cracked a vertabra...but I didn't know that cuz the Czech doctor could only say enough in English to tell me I needed surgery, and I should go home....but if I went home boyfriend would have to go I stayed on in a cervical collar for 4 more months going for massage, and the Czech version of physical therapy......but then my grown son called to tell me he had been indited under the Rico Act as a member of a huge pot selling conspiracy, and was facing 25 years to life in prison.....and yes he was involved but on a very, very small I left Prague in my cervical collar, and flew a years worth of crap "home".....I borrowed money and bought this mobile home I am entombed in...rebuilt it by hand in soft casts, and a cervical collar.....borrowed more monry for an attorney to get my son seperated out of the conspiracy in an 8 month trial during which I fed, housed, and cared for us both driving to lawyers, and pretrial officers, and doctors, and my son's job.
    (My son was employed by a contractor but they were too "busy" to help me on this place...and all of his money had to be sent back to his home in CA to pay their bills. He was very angry at me for being ill, and kept telling me "This is not about YOU Mom..I AM GOING TO PRISON whenever I cried from the pain, asked for help, or money for his phone bills)
    The now X remained in Prague to f**k 20 yr of which he impregnated...he still lives there...a reluctant father now....boy and HE thought MY ILLNESS cramped his party style.......lololololololol.
    My son went to prison.....a nice minimum security place the fancy lawyer got him for 3 1/2 yrs....he was only 300 miles from here so I visited frequently, sent letters, and what money I could to keep his spirits up....and in April last year he went home to his girlfriend, and their home in LA.
    Anyway here I sit....alone and broke.
    Felt real sorry for myself for a long time.
    Hosted my own FM support group online for a couple of years.
    for comapny :)

    One week each summer I spend in the Arnot Forest with the monks of Namgyal, Dalai Lama's personal Monastery learning more, and more about my own mind, and my mind/body/spirit as one...and meditation techniques that help in dealing with the pain.

    Then in 2002 I decided to become the poster child for positive thinking.
    But the infections stopped being one here, and one there and became constant.
    Sinus, teeth, ears, throat.
    My immune suystem is "Disorganized"
    I began taking broad spectrum antibiotics.......and was shocked at how many FM/CFS symptoms went away....but only while I am on them so I convinced my doctor to leave me on them as I became "functional" for the first time in years.
    I began to "run" on a zero impact machine at the gym and lost 50 lbs.

    After a 6 yr dry muse returned bringing me songs to write....but I had no guitar player or band to use as a tool, so I decided that me, and my FM/Osteoporotic/arthritic hands should learn to play enough guitar to sing/play my own stuff as an accoustic act.
    For the last year I have struggled out 10 songs....which I am still in the torture stages with trying to force my hands to learn them well enough to record....which I am also doing/learning to do all by myself here on my PC cuz when you are in solitary that is the only way to get things done....and I got one done, and sent it to a few friends in the biz who really loved it.....and I need to do the rest, and get on with my "new life" I was building out of the ashes of my sad story....but predictably the antibiotics aren't holding back the infections anymore....and after ALL OF THAT I am once again so hoplessly ill I just can't bear it!!!!

    I am in my 4th year of total isolation with an uncaring family not tem miles away.

    I am a fighter.
    I have fought this disease at every turn, and with every weapon I can muster.
    I am tired, of the inevitable defeat.
    So......please be aware that when I is not for lack of having tried everthing at my disposal.
    I have gotten up, and started over so many times.
    Perhaps I will again.
    I couldn't even fit half of my schemes, treatment chases in this as long as it is.
    For now I work on the songs....and hope I will be around, and able to bring them to light.

  12. ssMarilyn

    ssMarilyn New Member

    I have family, but am alone with this condition. Everyone else around me is disgustingly healthy, but then I was too when I was their age. Hubby is 100% too. They really don't have a clue!

    Marilyn :)
  13. ssMarilyn

    ssMarilyn New Member

    You're fortunate to have family right there, even though they aren't much help. It's the pits being completely alone, even though it seems like a good way to live.

    Don't you have a Senior Ride there that can pick Mom up and take her to her appointments? I'm sure you've seen those little buses that tote the elderly around to their appointments and shopping? They're a godsend!

    Marilyn :)
  14. Mikie

    Mikie Moderator

    I do have loving neighbors who would do most anything for me, but I pretty much do it all for myself. There have been times when I've been too sick to do much, but I can usually summon up the energy to go to the store/pharmacy.

    Love, Mikie
  15. onecangomad

    onecangomad New Member

    Hey I'm sorry it is so hard......I remember all too well the days of my X, and my son being with me.....and to be honest most of the time I am happy to be alone now. No more of that constant degradation from loved loved ones.......I'm not trying to say with this thread that those of you who do have people in your lives do not suffer.....and so many posts here are proving my point....
    as those who have others keep writing how their loved ones "don't have a clue" having not experienced what they are going is it so hard for those who do have faimly/friends around to grasp that there is yet another experience that cannot be fully understood without it having been experienced......the experience of actually being alone, on top of that feeling alone thing we all experience??????
    Like when my father died.
    He laid there on machines pretty much "dead" for weeks.....but the moment I walked into the room, and he was truly dead I was struck in the an the absoloute absence of life, the total SILENCE of the cells blood flowing....I would never have believed that there is a barely audible "hum" to a living body that leaves a black hole of silence when it goes...... so huge, and profound it took my breath away.
    This is the major diffrence in having others, and not having others....this silence....which cannot be understood until experienced in one's own everyday life.
    People living in your home means this barely audible "hum" exists all around you....even with a silent roomate this would exist.
    This is more like the vacumn of deep space.
  16. pinkquartz

    pinkquartz New Member

    to write or read properly.
    i want to read it all again when i return to normal state of exhaustion and not tonights well actually feel asif i am about to die, i m sure you know how it is.
    i am being visited, yet ignored as a person ,so i feel lonely and invaded.
    still i love my daughter so maybe it will be better tomorrow.
    i am a fighter too and i think i knew you were. something came across, i am also interested in tibetan buddhism, i used to meditate regular but find it not really happening with the painkillers and or the CFS/FM.
    but the part of me that still flies is there in the meditaion or the me that meditated.
    talk again soon
  17. nancyw

    nancyw New Member

    Hi: recently dx'd with fibro, but have had a terrible year with dizzy/vertigo, brain fog, balance and coordination. Sometimes I make up my own words; they just pop right out. I live by myself, but I moved to this town to be near my daughter and 2 grandkids (5 and 2). I've been depressed for so many years and have no "friends" other than my daughter because I just didn't want to do things. I talk with my sister every few weeks, but she's in tax season and works about 18 hours a day. Haven't told my brother yet. Long story short, couldn't handle it without my cats. I have 5 now and am babysitting 2 for my daughter until she moved into new house. They never critisize me about how tired I am; in fact, they love to sleep with me on my waterbed-anytime. They also know when I'm feeling bad and always manage to cheer me up. Just starting my "odyssey" with disability, because I haven't been well enough since after May of last year to work. I wish you the best. This board really helps me out; we can't ALL be crazy! Good luck.
  18. teawah

    teawah New Member

    I am living with my as I call him, husband. Not really married but live together as if. He drives truck at night and sleeps during the day. I am alone at night and while I sleep and alone during the day while he sleeps. I don't go many places because I am twenty miles from anywhere. That and the fact that he is somewhat overly jealous about me spending time with others. He always has the excuse that there is work to be done here at home with the housework or the business and that I waste too much time running around. Wasting money also. Therefore I feel alone most of the time. I have nobody to help me, he isn't very understanding about my pain. He laughs at me and tells me I am all f-d up. Oh well so I am. When I complain about him putting his leg on me (it hurts) he tells me that I complain too much. He has no clue. Today he told me that we don't love each other because I am not falling all over him for sex. I guess that he thinks if I really loved him that I would be all over him. In my opinion, if I didn't love him truly, I wouldn't put up with all his criticisms and put downs and in the past, physical and verbal abuse. That part is better but I tell you what. I am glad to be alone most of the time. It's better than hearing how messed up I am. What, does he think I am stupid? I don't KNOW how messed up I am? Get a grip! Nobody is more painfully aware than I.
    Sorry, I got carried away. I guess I am feeling a little frustrated.
    LOL, teawah
  19. onecangomad

    onecangomad New Member

    Awwwwwwwww Pink...sounds as though you are having a really rough time.
    I guess we all kind of know that feeling of "I feel like I'm dying" in one form or another....I am so sorry you feel that now. :(

    I have always said that to me this disease feels like being poisoned.....and I have found research from a German Doctor named Hey that says exactly that.
    His research showed a bacteriophage infection of the intestine, and how toxins from cell sheathing that die off as a result are poisoning us from inside.
    Great research.....and I corresponded with him about why I feel so much netter on antibiotics.

    People can come see us without ever SEEING us !

    I finally had to make an appt. with a spine doc.
    Can't take enough pills to kill the pain.

    Oddly enough my sister called last night for the first time in four years.

    Have noticed something that I'm not sure is good, or bad.
    I have always thought I really wanted people back in my life......and I DO........but....something strange is going on as I suddenly find that I am not so eager to have them.

    I may have already been isolated for too long....but if my plans are to succeed I am going to have to leave the "cave" sooner, or later...that or start constructing a stage in the living room.

    I am very determined....and moving along nicely.
    Almost got the second song recorded today.....but by the time I had worked all the timing bugs out to fit to the click track my hands, and fingers were too far gone to get the take.
    I should get it tomorrow. :)

    These are rough recordings....just me, and one mic, an accoustic guitar, and my PC.
    Not much for production, nothing like a CD from a store.
    Let me know if you ever want to hear one....well THE one I have already done....lolol.....and this other one should be up in the next day or two.
    I don't have a site yet....not enough songs recorded yet....but I do have a place over at Smartgroups where I put up the files.

    Tibetan View has kind of saved what little sanity I had left...or ever had for that matter.
    It doesn't matter whether or not I am in formal practice alone, and so simply has kind of made every minute of my life practice.
    Since all is silent anyway....I practice mindfullness constantly.
    If nothing else I have learned the value of "Carry water, chop wood" these past years.
    By viewing my isolation as an opportunity for a constant "retreat" I have managed not to go completely off my nut!

    I'm so sorry you are having such an awful night.
    Hope it lifts soon.

  20. suexi

    suexi New Member

    I have had cfs for a year now. My son moved out 6 weeks after I got sick. What a double Whammy! I was devastated to say the least. I only have the one son. He calls every now and then and helps out but not too much. I accept that he has his own life to live. My mother and I don't talk because of an argument we had just before Christmas. My brother and I are not close. So that's it as far as the family I have. I don't really have any friends just a couple men friends that I usually only speak to on the phone. I guess the other friends that I did have gave up on me since I can't go very long distances, party anymore nor can I make any plans, so they have their own healthy energetic lives to live. I have tried everywhere to look for support groups in my area. There isn't any. I would like to find friends who have this illness also. It's nice to be around people that understand you. And I get soo sick of people who say "you just need to go out more", or "you need to meet someone then you will have more energy being in a relationship" or "just don't think you are tired and you won't be" lol that was a good one.
    I am able to get things done, keep my house up and work part time cleaning houses. I am on a strict diet and I am just starting to workout at the gym. So needless to say it is really hard to have a life and do all that with this DD. Sometimes I just can't stay in this house by myself. I can feel like total crap and still force myself to get out of here. So I will sometimes run an errand and won't want to go home so I will sit in a parking lot or something and rest or eat just to kill time. lol, god I feel like such a loner. I used to be so active, had lots of friends, I had met my boyfriend online; that was fun until he drove me crazy; maybe that is how I got sick. lol. Does anyone else feel like they have to leave their house no matter how terrible they feel?
    [This Message was Edited on 03/15/2003]