Fibro stole my identity...how to get it back?

Discussion in 'Fibromyalgia Main Forum' started by me-n-fred, May 26, 2003.

  1. me-n-fred

    me-n-fred New Member

    I've been doing a lot of thinking lately, and I've realized that when I got sick with fibro and everything else, I had to give up a lot of my dreams/interests simply because I couldn't do them anymore. For example, I had wanted to work in Deaf Education for years, but I could no longer keep up in my education classes (I was barely 20 when I first got sick), plus trying to learn ASL was a joke. My hands just didn't work like that anymore.

    Anyway, what I realized the other day is that instead of finding other things to fill the holes left by giving up some of my interests, I filled the hole with being sick. I became consumed with fibro and everything involved with that. I know it's good to be informed, but I think I got a little obsessed. It's like it defined who I was. And the ironic thing is that I hate when other people treat me like I'm sick and there's nothing more to me than that, but that's how I was treating myself.

    So, I'm wondering...well, first, has anyone else felt this way? And if so, what did you do to change your way of thinking? How do you find a balance between "real" life and being sick? Where do you draw the line?

    I hope this makes sense--it's a rather foggy day today!
  2. tansy

    tansy New Member

    I so identify with your illness being seen as who you are. I use a wheelchair so I'm always being asked why I am in it, some people don't see me at all, just a disabled person.

    Years back I did some serious voluntary work, lots of media coverage, local and national. Effective yes, but I was then seen as the woman with ME. Within the regional group this happened too. I felt I was drowning in it all and struggling to regain my own identity. Even when asserting my true self some did not want to take it on board because they did not see as it their interest to do so.

    Well time has passed since then. Still get asked why I'm in a wheelchair but I tend to use practiced and fairly successful comments to prevent any further intrusions and waste of my too little mental energy. People who know me ignore the wheelchair and just see me.

    They know I'm ill as well, take it into consideration but don't pry. Most of them can judge the kind of day I'm having just by looking at me now. I'm seen as someone who's intelligent and motivated but who struggles to express it.

    As to how I fill the holes. Well apart from those periods when I'm struggling just to get myself through the basics I have always had other interests. Studied when I could and learnt new skills more akin to my disability as other skills had to be abandoned. Did voluntary work, teach people photography, help them learn to play guitar.

    I've always been seen as a catalyst, partly due to my background in education but also that's part of who I am. So when people are making lifechanging decisions I'm the one they turn to. Because I accept people as they are when they bounce their ideas off me any responses are relevant to them and their ideas. I get a real uplift from this.

    It's important to try and find some things that give you pleasure and a feeling of personal achievement. It gives us such a boost and distracts us from the daily drudgery of it all.

    Cheers

    Tansy

    [This Message was Edited on 05/26/2003]
  3. Princessraye

    Princessraye New Member

    I don't know how to get my identity back. I got sick at 29 and am now 45.

    I have to work (single) and when I use my energy for that there isnt' much left and that goes to laundry, etc. I am just surviving.
    I wish I had some time just for me so I could work on these things.
    But right now it's work and sleep and try not to think too much.
    My best to you.
    [This Message was Edited on 05/26/2003]
  4. Mikie

    Mikie Moderator

    I had become obsessed with getting well and focused all my energy on that. My therapist used hypnotherapy to help me learn to be a well person again. She said that when we are sick for long periods of time, we identify with our sick selves and forget how to be well. The memory is still there, but we have to get back in touch with it.

    The essence of who we are is always with us. It helps to identify with our internal spiritual selves rather than with our external lives. For most of us, our external lives have changed dramatically.

    Love, Mikie
  5. SheriAL

    SheriAL New Member

    The first two or three years all of us are scared, we look for info on our illnesses. We are frightened who will leave our lives, whether it be a husband, family member , friends etc.
    Then we try to establish a relationship with our diagnosing doctor..we are dealing with different meds and new things cropping up with the illnesses. Financial worries, disability issues,

    Then we see most of the friends drift off as we can not entertain them anymore or they don't want to be with sick persons..Most of the time we have been the givers and they are the takers..in the past...

    Now after a few years of having the illnesss, we must learn to schedule the best time to get groceries, and how many hours to lie down a day, making a list to not forget something ..finding new ways to remember how to keep going in this world..with well people.

    I find that I can not even do banking..I just tell the teller to help me as I can not calculate some days money..They look at me odd , and I explain due to my illness, I can not concentrate or do math well at times..I used to be embarrassed but I tell them anyway...or otherwise I would be standing there at the tellers window speechless...that would be worse...I look so normal....to them.

    I dont remember my twenties and thirties...that life is gone now..I am another person now...My life was altered by fibro, cids, mcs and Dystonia..

    However , I have accepted the illnesses and I just try to keep my glass half full in life, I realize that whatever comes tommorow I will face it tommorow..I can not do a thing about it today...

    Our lives do change, we can not relate to those in the working world now...they resent us for being home..even though we are sick...many of us are not in wheelchairs...and we look good..
    but we have to lie down for hours daily and plan our small chores around that time..we can not plan to go to a play or a movie with someone as we might wake up in a crash that day...from the illness....

    So yes, we are different than before the illnesses...in some ways I am a better person...I have more time to be compassionate to others now and to observe nature the animals around me, the beauty in the stars, the full moon, a flower growing...Sheri in AL
    [This Message was Edited on 05/26/2003]
  6. Sandyz

    Sandyz New Member

    I too feel like I`m losing my identity. Its not a good feeling, very scary. A lot of days I feel like this shell of a person with nothing but pain and more pain.

    But at the same time, I feel like I`m being molding by this DD into something new and better. When I see the end result, I think I`ll be happy but its this in between stage I feel lost.

    I guess we all have our crosses in life to bare and its a difficult road we walk here. I think there will be a big reward for us at the end of this long journey!
  7. tulip922s

    tulip922s New Member

    Sorry to sound so gloomy, but, either being bedridden or homebound due to all the horrible symptoms of CFS/FM has me saying "I cannot accept this." In my bedroom and living room I have books and magazines on everything from CFS, FM, yeast control, healthy living, pain management, etc, etc. I also find myself on CFS/FM message boards and combing the internet for information.

    "Normal" people do not understand us,,,now when asked "how are you doing", I just usually say "ok, or pretty good" as they really don't want to hear it. I find that I can abandon my quest for the answer to this dd when I focus on happier things. For me considering my current restrictions, watching the birds come to the feeder, petting my cat and talking with my daughter about her day when she returns from school helps me balance out my day.

    I now force myself to limit only allow myself 25% of my day on my quest for the answer to this dd. I agree the balance is tough and thought this was a great post. Best of luck to all. Tulip
  8. jamedw1

    jamedw1 New Member

    where it feels right...
    but don't ever let what it is you have define you...
    it may take control of your body...
    but it can't touch your heart...
    and it can't touch your soul...

    you are who you are...
    and don't ever quit being who you are...
    ed
  9. latracy

    latracy New Member

    I have decided to live with FM. I had felt the same way after I was diagnosed three years ago ( but have been experiening the pain for almost 10.) I can say that I have learned to push through the pain most days. Admit when I need to rest, and learn to live with FM. I am a teacher, and I have learned that I could teach from my rolling chair when I get tired. My husband and son help me at home. Of course I had to hit rock bottom before my new way of thinking. I was depressed, tired, full of pain and self pity. I had to take a leave of absence from work. After four month of this, I could not stand it. I rather be doing something in pain, than sitting at home. I started seeing a chiropractor, taking zoloft and flexiril (sp) and went back to work. I still have those days. I am very careful and get at least 8 hours of sleep a night. I have found this to be the most helpful in making it through each day. I hope that you find the strength and power to endure. "When life gives you lemons, make lemonade" Latracy
  10. MtnDews

    MtnDews New Member

    Me-n-Fred, you described how I've been feeling lately to the T. Thank you for putting it in words.
    H
  11. goingslowlycrazy

    goingslowlycrazy New Member

    Latracy, you hit the nail on the head for me when you said
    'Of course I had to hit rock bottom before my new way of thinking.'

    I have found this thread to be so very illuminating. I think this is why I have been feeling so flat and down lately (apart from dealing with a major flare).

    I think when we are first diagnosed, there is a kind of relative euphoria. All of those months and years of wondering what is wrong with us and suddenly we find it has a name and others feel just as we do. It's like the adrenaline of that gets us through.

    Then as Mikie said, the search begins for THE cure. We read anything and everything and then slowly it dawns on us that THIS is it. We are stuck with it now. It ain't going anywhere.

    I really thought I had a good mental attitude regarding this DD and I still do. It's just that when a flare hits and knocks you off your feet, it is a little harder to remember how to stay positive and to rationalise.

    I am going to go on a major search for positive inspirations...things that have helped people in flares, little sayings, anything that will help me to stay on track and not let this darned thing drag me down.

    I AM the same person as before, she is just having to deal with a shed load of challenges at the moment - but hey, who said it was gonna be easy?

    I am going to shift my emphasis on keeping HER going and keeping her well-rounded...not just a cfs sufferer, but a person who happens to have cfs. There is a world of difference.

    Thank you so much for this thread, it has been a great help to me.

    hugs
    Mary x
  12. songsungblue

    songsungblue New Member

    I can relate to you and the idea of losing one's identity. I first heard of fibromyalgia and that I could have it when I was 24. I was just finishing up my B. Ed. degree in university. I taught part-time for two years and finally had to quit that type of work. I felt horrible---physically, but I also felt like a failure when I saw others moving forward in my life when I felt like I was moving backwards. I also didn't get to pay into benefits long enough so now I can't qualify for disability. I too feel like I've given up my dreams (certainly my career)and other interests. It's hard not to be consumed with an illness that has changed every part of your life. You are definitely not alone in your thoughts. Hang in there and have patience with yourself.
  13. TNhayley

    TNhayley New Member

    Staying positive is one of the hardest things for me to do. The funny thing about that is that I have always considered myself a *cup half full* vs *cup half empty* person.

    I'm here reading these messages, thinking how wonderful it is that I'm not alone, but when I turn the computer off ... I'm lonlier than I've ever been in my life. It's a hard pill to swallow. Reaching out, as so many have mentioned, has it's various limits.

    I feel like I'm almost obsessed with finding answers, too. My family certainly thinks so and it is a source of great tension. And I just can't explain my NEED to do it. The advice (not sought after) I get most often is to just let it go and do the best you can. That seems to only make me angry. It seems to me that it is easier said than done. Like I can just ignore it? How does that help? What about my kids? Don't I have a responsibility to them so that they don't have to travel this road?

    Yeah, I feel like I've lost the old me ... and I'm not all that happy with the me I am right now. Well, I'm off to the library to refresh my greatest sanity making source - books. My new doc suggested I read Andrew Weil's "Spontaneous Healing". I'm a little wary due to the title (I'm like - yeah, that'll happen), but what the heck ... just keep on keepin on. :)

    Slightly insane but at least I look good,
    Hayley
  14. barny

    barny New Member

    im an fms addict myself since dec when i was in rta iv done every think i can to find out about fms it took over my life i know im in pain all the time but i kept thinking this isnt right somthink else is going on iv had every test going and every think came back clear but i was in pain 24/7 and didnt know why i still dont now ive been off work since dec its driving me mad ive had 3 sessions of acc done and therepy nothing has worked yet addicted to pills ive more pills than boots . the sleeping tablets help but just latley ive been waking up in the night with imense pain in my hands and arms ive had loads of nerve pain over the last 6 months ive still got a lot of whiplash my back was badly damaged but to have fms as well im in total agony as well all the time ive tried every trick in the book nothing works noboy nows how u feel my partner dosent understand how i feel because i look alright every body thinks your alright but u will now that some days are worse than others but you will know how i feel you have to keep going .im fobro mad cant get enough info its driving me crazy,but its the only thing iv got now ,my friends have gone sick of me going on i believe or they just dont know how to help u my whole life has change i was really happy independant worked for myself had girls night outs and girls nights in but thats all gone my ppartner, jamie tries his best but again if you havnt sufferd you dont know how to help some one mt 3 children have all suffered my little one is only 2 she cant under satend why mommy cant pick her up some days or put her in the bath simple things you took 4 granted in life mean every think now,like the other day i tried for 45mins to open a can of soup but my hands were telling me no i just sat there and cried ithought to my self im only 33 not 73 whats going on how long will i hav this but in the end i keep telling my self it could of been much worse i could of died in that rta so keep telling your self life is worth living even if its not like before you can make it want u want to make it bye for know fibo friend
  15. barny

    barny New Member

    im an fms addict myself since dec when i was in rta iv done every think i can to find out about fms it took over my life i know im in pain all the time but i kept thinking this isnt right somthink else is going on iv had every test going and every think came back clear but i was in pain 24/7 and didnt know why i still dont now ive been off work since dec its driving me mad ive had 3 sessions of acc done and therepy nothing has worked yet addicted to pills ive more pills than boots . the sleeping tablets help but just latley ive been waking up in the night with imense pain in my hands and arms ive had loads of nerve pain over the last 6 months ive still got a lot of whiplash my back was badly damaged but to have fms as well im in total agony as well all the time ive tried every trick in the book nothing works noboy nows how u feel my partner dosent understand how i feel because i look alright every body thinks your alright but u will now that some days are worse than others but you will know how i feel you have to keep going .im fobro mad cant get enough info its driving me crazy,but its the only thing iv got now ,my friends have gone sick of me going on i believe or they just dont know how to help u my whole life has change i was really happy independant worked for myself had girls night outs and girls nights in but thats all gone my ppartner, jamie tries his best but again if you havnt sufferd you dont know how to help some one mt 3 children have all suffered my little one is only 2 she cant under satend why mommy cant pick her up some days or put her in the bath simple things you took 4 granted in life mean every think now,like the other day i tried for 45mins to open a can of soup but my hands were telling me no i just sat there and cried ithought to my self im only 33 not 73 whats going on how long will i hav this but in the end i keep telling my self it could of been much worse i could of died in that rta so keep telling your self life is worth living even if its not like before you can make it want u want to make it bye for know fibo friend