Anyone else 'losing themselves'?

Discussion in 'Fibromyalgia Main Forum' started by shanwill, Aug 2, 2006.

  1. shanwill

    shanwill Member

    I'm not sure who I am any more. I used to be a fairly happy go lucky, fearless, passionate person and this horrible illness has robbed me of virutally my soul.

    I took (what was supposed to be fun), personaility quiz to have it reveal someone different from 3 yrs ago. It's sucking the life out me and I don't know how to make it stop. my friends and family have all noticed this change and hurt from it too.

    i was travelling around the world and hugely social. now i hardly leave my house. and when i do, can only manage a few hours.

    you battle daily with this, then have doctors that do nothing to help, and you try to push yourself to keep going, or simply try and deny that things have changed sooo much to try and stay sane and not bitter from the loss of dreams. but then when you look in the mirror and see just how much life has been robbed from you - it's devasting.

    the only thing that has kept me going is this hope of getting better. i've tried sooooo many different theories and it still amounts back to the fact that i feel sick ALL the time.

    i don't know what i'm trying to get out of writing this, cause sadly it is depressing. i guess i'm just sharing how i honestly feel and how much i trully HATE this illness!!!

    can anyone relate or advise how you can not let it suck your soul as well?

    i guess after all this time, i really thought i'd be able to 'beat' this. and can't actually believe how sick i really, really am.
  2. AnneTheresa

    AnneTheresa Member

    My heart goes out to you.

    I was devastated to realize this terrible illness had become a part of me. That's what it felt like anyway - that FMS was as much a part of me as my right arm.

    The trouble with feeling that way was that by hating the illness I was hating myself. I was making myself truly miserable. Therefore it became important to consider the illness something alongside myself rather than as part of me.

    It was a difficult shift to make but now I'm free to HATE the disease without hating myself and that's made a difference.

    I know this anecdote doesn't align with what you posted but it felt like something I wanted to share with you. If only to say, I know how you feel and wish I could help.

    God bless,
    Anne Theresa
  3. bluestanglady

    bluestanglady New Member

    I know exactly what you're talking about, as I feel that way a lot of the time. You're not alone in the way you feel. My problems started back in 1998. Before that I owned my own court reporting business, traveled to different areas of the state to different courts, was raising a family (including husband!), busy with church activities, playing keyboard in a band and singing. Then I ruptured a disk in my neck, had surgery and was then diagnosed with FM after that. I went on disability shortly thereafter. I'm restricted by the doctors as to how much I can lift, how long I can sit, among other things.

    I feel just as you do -- like I'm not the person I once was. Everyone tells me the famous line people with FM have -- "But you look SO good, how can you feel so bad?"

    I know it must be so hard on you not to be able to travel (you're so young) and do the things you used to do. Hopefully by the time you're my age (51), a cure will have been found.

    My suggestions to you are to find some other things you can do to keep your mind and body busy. I've kept in shape. I do Pilates' and walk (when it's not too hot outside). Also I've starting watching the Food Network and have become interested in cooking. I've always been a good cook but never 'ventured' out!

    Plus I enjoy taking pictures. So I bought a digital camera and download those online to the Kodak Gallery, order my prints (which are very cheap) and do a lot of scrapbooking, especially in the winter months.

    This year (and for the first time), I planted a back deck garden in pots. I have tomatoes and cherry tomatoes and cucumbers. I enjoy taking care of those and reaping the benefits. I'm going to buy some homegrown green beans and can those for winter.

    This week I've made apple butter and canned that.

    Do you like music? I've found that if I turn off the TV and put on music that I really enjoy (I have DirectTV which includes XM radio). I turn it to the music of the 70's and 80's, which is the time DH and I were dating and first married. You'd be surprised at how it lifts my mood!!

    I hope I haven't talked too long. I just want you to know that you can reclaim your life. Maybe instead of the long travels you used to do (which I know you miss terribly), you can start a website or something having to do with travel. From your profile you look like you have a lot of expertise. People can benefit from your experience.

    Just try to find things that will make you happy and keep your mind and body moving.

    I wish you the best and hope your day is a good one!


  4. greatgran

    greatgran Member


    Oh, I can so relate to every word you have written..It has been 6 years for me and I do have better days but then it hits again like I am starting over...

    I have been in bed all week feeling so depressed cause I can't do and feel so alone..I do try to be positive but some weeks it hits like in the beginning..

    You are young and there is so much hope for you, I don't have the youth but trying not to lose hope but this week I just feel do drained...

    My family still needs me and I push and try then end up like I am now...

    So, glad you did write, we are here for you ..Wish I could offer some advise but can't ...Oh, how I can relate..

    God Bless,
  5. rockgor

    rockgor Well-Known Member

    I'm on year 26 w/ CFS. But there are stories of improvement here now and then. Some people get a lot better.

    I am better, tho far from cured, as a result of the TV treatment Prickles reported. Have been doing it the past month.

    Good luck.
  6. razorqueen

    razorqueen Member

    I know exactly how you feel. How can you even explain it to others when you don't know yourself?
  7. caroleye

    caroleye New Member

    In my 60's; hit me in my 40's; worsening every year. Only good news is to remember that it's just a matter of time til my heart will give out.

    Sound negative to people who don't "get it", but the suffering is just not what I'm able to control.

    I've spent all these years researching & doing experiments until I'm just worn out. Neurofeedback is my last hope, but guess my optimism has run its course as well. I do believe it will eventually help the younger ones.

    The good thing is that I've lived an incredibly rewarding life, and there is nothing I wish I'd done.........for that I'm grateful.

  8. TAM

    TAM New Member

    HI Shanwill,

    I'm sorry your feeling this way, and yes i know exactly what you mean.

    I'm not at all the person like i was 6 years ago, like you i don't go out much and when i do i can't stay out long or do much because it leads to me having worse pain.

    I'm a total stranger to myself anymore, i hate the person i have become. I can't even scramble my son an egg for breakfast my pain is to bad.

    But i keep keep going and i don't let the illness win even though its getting harder each day to cope with this. I just keep my strong faith and i truely believe evrything happens for a reason, so i know i have this chronic daily pain for a reason so i just keep going, and also i think of my son when i'm at my witts end, and when i think of him i am able to remain strong.

    My heart goes out to you i can totally relate. I wish i could tell you what meds or exercise that would help ease your pain but i have tried soo soo many different things and at this time nothing has helped me. But when i run across something that does help i'll let you know. I really wish i could do something for you sweetie because i do know how hard it is to be sick everyday. I honestly forget what good feels like, i'm not kidding i can't remember im sure you can't remember either.

    I wish you better health and lots of happiness, try to hang in there hon. I care about you and you will be in my thoughts. Take Care, Tammy.
  9. Michelle_NZ

    Michelle_NZ New Member

    Reading your post was like reading something I had written myself.

    That is exactly how I feel.. I feel like I am grieving a death - me - the me I was and knew well has gone, and I have not yet come to terms with it.

    I am heartbroken over what has happened to me, the loss of my life as I knew it. And now I get told that I need to accept that I have these illnesses,and must learn to live with them.

    I just dont know how to do that. I dont want to accept this fate, I dont want this life of chronic pain and sickness - every day, day after day. It just goes on and on. Its relentless.

    And to make it even worse, the fact that NOONE around me understands what I have to deal with on a day to day basis. I get funny looks when I tell them that I just can not go out at night - I cant handle it. Some nights I'm trying so hard not to grimace and cry because the pain is so bad, that all I can do is passively watch TV. I can barely talk - its just too much effort.

    I'm sorry I really dont have any answers to your questions, as I have the same questions myself. I'm in a pretty desperate state right now, and feeling so sad and angry about it all. It's hard to imagine that I can come to a place of acceptance and learn to live this "other" life that has been forced on me.

    We have similar backgrounds too - I've been sick nearly 3 years, and was also a regular party girl in my day. I also thought I could beat this thing - and I came pretty close for about 15 months, but this relapse over the last 8 months has been, in a word, horrific.

    Sorry, I dont mean to sound depressing, I just wanted to let you know that you are not alone in how you feel, and I'm hoping some other members here will have some helpful messages that we can both benefit from.

    Take care
  10. Hootie1

    Hootie1 New Member

    A big ditto!!
  11. charlenef

    charlenef New Member

    also i used to be someone that always helped everone else.i told my only girlfriend i have left that i dont even know who i am anymore. im not the soccer mom that i used to be. i cant even go to parent teacher confrence.i loved my job of being a daycare provider ,all the chidren were my buddies.i held out as long as i could before i closed down.i hope things will turn around one day for all of us god bless charlene
  12. shanwill

    shanwill Member

    Just wanted to thank everyone - sounds like I am not alone. Am feeling less frustrated today (maybe the venting helped?) and more hopeful of getting better (or do you call that DENAIL! ;)
    Whatever gets you through.....

    Michelle I read your profile and you're right - very similar!! Too bad you live half way across the globe...would be nice to have a friend here who actually gets it and is may age! I've been to NZ (back ofcourse before this DD) and it's gorgeous! Not to mention Kiwi's are great - very similar to Canadians.

    Anyway, thank you very much again. I just wish someone famous would get this for the DD to get some lime light and shed a much needed torch on this baffling disease.
  13. Lolalee

    Lolalee New Member


    I just wanted to respond to your post because I could really identify with how you are feeling. I have said those very words myself "I'm losing myself. Who am I?". OK, what has helped me is realizing finally after 8 years that I truly have an illness. I can't keep living in limbo as if I am the same person I used to be and this illness is just going to go away.

    I think it's important to go through the stages of grief and feel them all...anger, denial, acceptance, etc. (I can't remember them all, but there are about 5 stages). I felt them all. I have said here before that a Psychologist friend of mine who has many patients with FMS/CFIDS has helped me enormously. What helped the most was when she told me to stop pushing myself and stop running from the illness. She told me to embrace the illness and treat myself like I would treat a small child.

    I am so much calmer now. If I can't give dinner parties for 12 like I used to, that's the way it is. Someday I might be able to but right now I am a sick person and I have to focus on me. I haven't given up. I have turned my focus from fighting this illness to caring for this illness and doing all I can to feel better and enjoy the things I can do.

    I hope this all makes sense. I hope that you can get beyond the frustration and anger (which is normal) and find peace with yourself and your health.


  14. MamaR

    MamaR New Member

    ....this sounds so familiar with this disease. I am in there with so many others on here are.

    I was such a active person and it has changed my life, but I am like you mentioned...we have to hope to feel better.
    I had to come to terms with the change though. I can't be the person that I was before... just yet....but I won't give up and I don't want you to either. We will just do what we can and try to find other things that we can do until we feel better!

    Hang in there!

  15. sfrazier

    sfrazier New Member

    I know exactly what you mean by that. I've only had it for two years and I am so angry and so desperatly sad. I keep waking up every morning hoping that this is the morning that things will be different. They never are. I'm taking 11 pills at night and then another 6 first thing in the morning. I hate this DD. On my form for Disability I told them that to me I feel like I no longer have a quality of life just and existance.

    My kids are really the worst cause they are just as sick of this DD as I am. Unfornitly they don't have to walk in my shoes so by now they are just getting mad at me when I say I can't do something or when I forget something they might have said to me 10 minutes ago.

    It is so nice to know that someone else feels as awfull about this whole thing as I do. I'm very glad that you posted cause it gave me a chance to vent too. Thank you so much........SueF
  16. jole

    jole Member

    I am having a very bad time lately. I have grieved for my loss of self, and did fairly well for awhile with accepting, but the denial was all back again and I was trying 'way too hard at work, home, etc. to prove to myself that I could still do most things, just not anything after 6 or on weekends.

    Unfortunately, that wasn't enough, and I was missing more days at work and feeling worse. the stress of things has gotten to me and I feel again like I did 4 years ago. I HATE this, the trying to act normal for others when I feel horrible, the smile that is so fake, the constant pain and fatigue that no one understands, the muscle cramps and mental fog, the inability to drive some days, reading and not understanding, and as someone else said, literally being too exhausted to talk, etc.etc.

    This is not living. This is mere existance, and I WANT MORE. I still want me back, and I still miss me.

    I wish for all of us a miracle. If not a cure, the miracle of understanding from others that would make our lives soooo much easier.

    Friends - Jole
  17. jinlee

    jinlee Member

    I have lost and found myself so many times during the 30 years I have been dealing with this DD. Some years were better than others and some years were complete h---. I used to work at a sawmill, (really), jumped and trained horses, could ski, and never was ill. One day, wham, got a virus and I was down at 21 years old.

    It makes you even sicker when doctors minimize your symptoms or say it is all in your head.

    You just have to keep putting one foot in front of the other. I think we all go through a grieving process, especially if we have to quit working, can't spend lots of time playing with family or going out with friends (what few there are that decided to stick it out with your ailments).

    You also have to try many different things and see many doctors, some idiots that should not have Dr. before their names, and some sympathetic but nonetheless pretty ignorant, and a few good ones are out there. Keep looking and don't give up trying new things. I have finally found a new rheumatologist and hopefully can find some help.

    I am going to give in and be a guinea pig so to speak, as he is studying how different medications can help or not. My brother has gone to him with many of the same problems so I am assured he is not an arrogant a-- like so many. But I guess he is very eccentric and kind of hard to get used to, although very nice and empathetic. He is an internal medicine dr and a rheumatologist. I grew up with his sisters in another town and his father pulled out my bizarre molar and that was years ago but I guess that gives me some reassurance he is not an idiot.

    The first appointment is two hours. I suppose he takes you to a climbing wall and sees how nimble one is and what your pain scale is when you reach the top (LOL).

    I am rambling i guess, but my point is you just have to keep putting one foot in front of the other and taking just one day at a time.

    I found grief counseling helped me deal with the loss of my life and health as it had been years ago and accept that though I will not be the same, that my dreams had to change, that I can still BE in a positive way.
    [This Message was Edited on 08/05/2006]
  18. Juloo

    Juloo Member

    I realized it a few years ago when I started my (til then) annual reading of the book 'Confederacy of Dunces' and I didn't laugh. Ever since I moved away from New Orleans, it was a way to reconnect with the city I loved and have such fond memories of. There's one passage, and I won't quote it because it involves a rather raunchy exhortation by Ignatius J. Reilly, but it always would sneak up on me -- even though I KNEW it was coming -- and I would laugh out loud and then have to explain myself to anyone within listening distance.

    Not being able to laugh, for some reason, well, that scared me just as much or more than many of the physical symptoms of my situation.

    I've regained a good deal of my sense of humour in the intervening years -- there's a lot of water under the bridge -- but it has taken some doing.

    And now because of Katrina, reading 'C of D' just makes me sad.

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