I cannot deal with this! What do you do?

Discussion in 'Fibromyalgia Main Forum' started by marw, Feb 23, 2006.

  1. marw

    marw New Member

    I found this so perfectly expressed in this article Janet posted that I am quoting the part that gets to me:

    "I desperately need pain relief to feel and act approximately in the same manner I did before I was stricken with osteoarthritis and fibromyalgia a few years ago. I know that I have to get used to the fact that this type of chronic disease changes a person physically and mentally, but the hardest part is to adapt and accept the fact that it is here to stay for the rest of my life—unless a miracle should happen.

    "I don't recognize myself and neither do my family or my friends."

    I cannot accept it! And I don't know what I'm going to do unless I can. I just can't face the fact that it will not go away or get better. If I start to let this thought cross my mind, I get so depressed I can't function. So I guess I have to live in a state of at least partial denial?
    How do others handle this? And I miss myself! I know that sounds strange, but I do! I miss who I was before I got sick! I just can't imagine living my whole life like this. I kept thinking it would get better, but it never does. What do others do?

    Please. I would like to have any response at all that might help with this part. (If there is one. Maybe there isn't?)

    Thank you.

    P.S. I don't mean I'm suicidal. I'm not. I'm just lost most of the time. I don't know how to get my life together, so to speak. I had to quit work because of the FM. And most of the time, I just do not feel like doing much. I do exercise at a gym. But I do not commit to do things with others, because I might not be able to keep those plans. I no longer travel. Sorry, I guess this sounds very self-pitying, and there are others much worse off than me. But still.....it sucks. The very worse part is the Anxiety (even though it is controlled with drugs) and the fog. THat's what I mean....I want myself back. I want my bright, fast brain working again, I want to be doing stuff, well you prbaly know what I mean?

    Sorry, I didn't mean to vent quite this much!

    [This Message was Edited on 02/23/2006]
  2. Musica

    Musica New Member

    to read "And I miss myself!...I miss who I was before I got sick!...I want myself back." It doesn't sound strange at all. Life has changed. My pastor told me that as he sees it, grief is like overlapping circles. You grieve about something, then down the road you grieve something else, but somehow it circles back around and touches what you were grieving for before. There are similarities in the things being grieved over - missing people, missing what you used to do, feeling left behind, etc etc. Does any of that make sense?

    I don't know if you went through any of this when you were first diagnosed, but I think the grief cycle can't help but come back around when you look at the things you can't do. But the thing is, Margaret, society has put so much weight on what we DO. But the important thing is who we ARE. And I think you ARE a wonderful, caring person. Can you find something to get involved in where you can be supportive to other people, when you are up to it? Where you can feel you are helping others without having to put out a lot of physical effort? Maybe visit with the elderly? So many people in nursing homes are so lonely. Even on the phone? I know, ironically it is still DOING something, but it is more giving yourself and reaching out from the inside.

    I am fortunate that I am still very functional, but I think we all need to remember that our worth is our SELVES. Who is it that says "Celebrate yourself"?

    I don't know if that rambling helped at all! I guess all I'm saying is, you are still you inside. I don't know what you like to read, but in reading you awaken your mind or your emotions or whatever is appropriate to what you are reading. If you enjoy music, know your soul is responding. Enjoy YOURSELF for who you are.

    You haven't really lost yourself. You have lost what you used to do, but you are still YOU, and I'm glad of it!
  3. marw

    marw New Member

    I can't tell you both how much your answers mean to me!! You helped so very much! I live alone with my dog. NobodyI know has FM. THey don't understand. I've even lost relationships. My family does not understand....of course, they live in abother state, but when I talk on the phone, if I mention it, it is just like they think I'm making it up, or at best....that it couldn't be that bad! But it is!

    Musica, I love what you said about we are still OURSELVES! I need to hold onto that. This is true. It may be buried pretty far down, but maybe if I reach, I can find it. Or maybe it's not buried and I'm not trying enough. (I was thinking here of how I used to paint and write poetry, and how I stopped wanting do those things. I don't know if I can't do them, or I just got depressed and don't do them. I don't seem to have had a lot of motivation.)

    BUt the thing about being ourselves is true!!! I read this somewhere else, too, and had forgotten....I wish I could remember the article and post it....it is vitally important. Oneof the things about the fibro fog is that we forget even the things that would help up, I think. Which makes this board so important!! I've never found anyone to understand me except on this board, since I got sick.

    I think it is all just now hitting me, because I have done denial so long. I refused even to believe I WAS sick, at first....and then I hounded my doc to "cure" it, and blamed him when he didn't...then I waited for it to go away....then I tried ignoring it (which doesn't work at all, and only makes a person sicker, because then you stop taking care of yourself). I even blamed my job, blamed the stress, but when I finally quit working....well, the pain was no better than before! It never was the job, it was always the FM!! (I was a ballet dancer, but the last 20 years I was a regular school teacher of 2nd and 3rd grade.)

    Wamps, you are always so nice and always answer my post! God bless you! I haven't done my Bio because I couldn't seem to get my mind in gear about what to say...organize my thoughts....but that might be an excuse. I'll try to do it soon. I am 66 years old. This is another reason I didn't want to do the bio. Although I realize no one HERE will start blaming my age... it was one of the most cruel things people said to me. (I can feel myself starting to tear up again....been crying this a.m., although mostly from pain, not from emotions...or maybe that, too). People actually say, oh isn't it just getting older? And brush it off.

    I do not have children. I wish I did, because I think this is a wonderful thing, to have brought new lives into the world....not just to have people to take care of you (from what I've seen, most grown children don't do that anyway), but to have contributed to our world that way, and to have family. I do have a brother....600 miles away....and he is nice, but he never calls me. I call him....sometimes I feel guilty about that, because he works so hard, and he is 61 himself, with no way for him to retire. But you would think my Nephew and his wife would make more of an effort to contact me. THey never do, unless I call, and then they are busy. Sorry, I think I'm doing more "pity-party" stuff here.

    What is really freaking meout about this illness, too, is that IT DOES GET WORSE, apparently! Maybe it can't kill us, but over the past 4 years (or whatever it is)that I've had it, it just gets worse. Or rather the bad spells seem to get worse. THe Rheummy said I don't even have OA, that this is all FM. He siad my hands curling painfully into claws is tendinitis (spelled wrong), but I think he is wrong.

    Anyway, wamps, I so appreciate you taking time to talk to me about yourself, too. Maybe, it's just misery loves company....I don't know...but it made me feel better to hear that someone else has these difficulties. I mean I know they do from reading this board, but it is more comforting when someone writesit to you personally, like you did. I know I have to get a walker, and a cane....oh, lord, I can't help but shudder at that...but I have to get over it. These things could help me on bad days. I have never seen anything so strange as to be able to --like I said, actually RUN up the stairs one day--and not even be able to walk the next!

    Thanks again to you both. I feel better from your answers. However, today (I posted this yesterday) I am having such a bad Pain day that I may post that separately!

    I woke upwith MIgraine. THen I couldn't find the IMitrex shots, which I ALWAYS have handy..howcould I have misplaced that important stuff???!!...an by the time I found it, my head was in agony!! (I think what happened is they are drilling on the street outside...the noise is just making me crazy! I have on earplugs and some big noise blocker earphones....I really want to move from the city,but cannot get the money to do it, and besides if I leave, then I will not have any friends, and I do have a few friends that help me....they may not understand the disease, but they do help. Althouh they work, so this is not daily help or anything, but still it helps, even if I just see them once a month!)

    After I got the Migraine down, I became aware even more of the terrible drawing and cramping of very muscle in my body. Have taken 2 Vicodin....usually just take 1...and a muscle relaxant.

    While I've been writing this I have stopped crying. I just cannot tell youhow much it means to have friends here on this board.

    So thank you again!! ANd bless you.

  4. Cromwell

    Cromwell New Member

    And I wanted to send you a hug. I know this losing of ones self. It can be so awful.

    I have no real suggetsions except to carry on loving yourself, and try and find something to replace the bits of you you lost. I know people here took up painting when they could not garden, that sort of thing. I just miss being gregarious and enjoying a lot of friends.

    Love Anne C
  5. tandy

    tandy New Member

    I agree,... I think living in partial denial
    is a must. It is for me anyway.
    I became ill with Fibro and a couple of other conditions right when I thought life was suppose to be its best.
    12 yrs just drags when you have pain almost daily.

    I think the denial in a way keeps me going,..and hope remains~
    Hope, that soon they'll figure out this complex/puzzling disease and we'll have the help we so desperatly need.
    But your so right,.. We can deny alot but not the pain.
    Its downright draining on our body and spirits!!
    Like you,..I wonder somedays just HOW I do it!?
    and most shocking is, that our disibilitys by this Fibro are almost invisible to others!!! How can that be?!!
    How we hurt sooooooo badly and nothing substantial is found on tests? (then again if I looked like I felt,..I would'nt wannna be seen!)
    The cognitive part of this is scarey~
    I find myself forgetting alot. Do you know what?
    just yesterday I was about to rent a movie at the video store that looked good. Good thing my son was with me cause he said to me "Mom,..we seen this already"
    sure enough we had~
    Sweetie I could on & on , because it just feels good to talk to others who relate. People that can read my words and KNOW what I'm talking about. instead of just getting an odd look from others that have no clue what FM feels like.
    Your not alone in this at all Margaret.
    Sometimes I read posts and I wish I lived near members just to be there for them,... like I wish they were there for me. This illness leaves even those with closeby familys so alone...... or so it feels anyway.
    Sending you a ((hug))
    I'm so glad your here with us~

    sleep well :)
  6. code34me

    code34me New Member

    I have been reading a book on verbally abusive reltionships. I know this does not have anything to do with your post but it did make me think. There is a statment in the book that reads "Part of the process of recovery is the grieving of loss, and part of the grieving of loss is the recovery of the spirit." I was just thinking that can apply in many areas of life? Your post has opened up my eyes just a bit! I am suffering so with this FM and CFS and I have 2 children 3 & 13. Your post made me tear up because I can so understand! But its strange how seeing someone else feeling the same way can be healing in a way (do you know what I mean?) Just a thought have to go pick up daughter from snowboarding now. Take care Sweetness, Codey
  7. tandy

    tandy New Member

    for Marw~

    Hope you see this.

    A concerned online friend,
  8. marw

    marw New Member

    Hi Tandy, Anne, and Codey.

    I'm sorry I didn't check this thread sooner. But so glad I did today. Thank you so much for your wonderful replies.

    I had to drink prune juice today...this is my laxative...and do without my pain meds until it worked....so I had a horrible day! I got up at 6:30 and I am a late person usually, just so I could do this and then still keep my regular doc apptmt. at 11:00, but wouldn't you know it did not work that way. I had to call him and reschedule for Mon.

    I'm doing this even though you don't have to do it for a CT scan (which I'm having tomorrow even though it is Sunday) because I DO NOT want them to be able to say "Oh, we couldn't see very well, because there was so much stool in there!"

    Because I am allergic to Iodine, I will also start tonight with taking 50 mm. of Prednisone at 13 hours, 7 hours and 1 hours before the test and also Benadryl before the test. I will be a zompbie again tomorrow! I sooooo wish MY DOC WOULD GIVE MY A TIME RELEASED PAIN MED! It took forever to get him to give me Vicodin, so I don't think he will give me anything else. Since no matter what I do, I get constipated, I have to endure this pain (above) every few days. (I hope this is making sense.... I'm still a little blurry.) It is now afternoon and I have been sleeping after the prune j. did it's thing and I could finally rest and take pain med.!

    Back to the subject at hand, you are so kind, you truly do understand about the loss of self with this disease! YOu made me feel better and I saw some good ways there to handle it, too.

    Tandy, you are so sweet to want to be with me in person! Actually there is a girl I met on this board who lives in my neighborhood and we are trying to find a time to get together, although we didn't yet, I know we will. And I do think keeping the hope (even if it seems like denial sometimes) is so important.

    I'm having trouble remembering just excactly what each person said right now, so I hope I didn't get it wrong.

    Codey, I tear up too when I read some of the posts here. It is so wonderful to finally be understood.

    Anne, thank you for the hug! I think I'll make a sign for myself about that "loving ourselves" part. It is so vital.

    LOve to all of you, and thank you!!

  9. JLH

    JLH New Member

    I know how you feel .... I had to quit work (take an early retirement after 30 years) because of my FM, lupus, heart problems, and diabetes.

    I never feel like doing anything. I can't exercise because I can't stand up for more than 10 minutes due to many back problems.

    Like you, I never commit to do things with others, because I might not be able to keep those plans.

    This type of like certainly does suck! I agree with you ... I would like to have myself back -- no brain fog, no pain, no fatigue. I would like to be able to work again, go shopping at the big malls, be able to stand up and walk, go places with my grandsons, take vacations, and do things that most "normal", healthy individuals do!

    Some days I get really depressed due to the pain and fatigue. My oldest daughter tells me that they control my life--how can you prevent that when they are so overwhelming?

    But .... we are so blessed to have so many friends here that we can talk with, aren't we?

    Much love,

  10. marw

    marw New Member

    Hi Janet,

    Yes, you certainly are on the same page of the book with me, as I know everyone else is too!! Boy, I am so sorry that you have those other things, too. I have only the FM (and it's accompanying things like IBS and TMJ, and so on, plus maybe some OA and the back problems). I don't know if I could deal with all the others you have, too. And yet you are so strong on this Board, and you help so many!! YOu make me want to meet you in person because you are so "together" and strong. I know it was not easy for you and that it isn't easy for you. You have my admiration!

    You said: "I would like to be able to work again, go shopping at the big malls, be able to stand up and walk, go places with my grandsons, take vacations"! Yes, that is exactly what I want, too, and I guess we all do! Boy, it was so hard to adjust to not doing those things! Somewhere on this Board, someone started a thread about "What would ou do if you weren't sick" I thought it was a great thread and meant to answer, but never did somehow. It seems like it would be a sad thing, but it isn't! Keeping in touch with what we would do if we could seems somehow to keep us in touch with who we really are, and we haven't changed....we just have to do diffferent things, I guess.

    Thanks again, Janet!! HUgs!!

  11. marw

    marw New Member

    Thanks for the hugs!!!! ANd right back at you! ((((()))))

    A special thanks for mentioning that it is O.K. to vent! I'm never sure how much of that I should do! Appreciated that I can!!

    More hugs!
  12. marw

    marw New Member

    Hi there,

    I did read that post. I will read it again.

    Yes, an in-person group is what I am trying to find. Anothe gal on this Board lives near me, so we may be able to start one!! Also, I'm looking for other groups around here.

    I know about crawling. I was still working when I had that part. My feet used to hurt then....probably from standing up all day....but they hurt in the a.m. when I got up, too. I would have to crawl into the bath to get the hot wax or hot water on them, and then to the kitchen and pull myself up to a chair. I, BLESSEDLY, have not had this part for a long time now. I, too, had to retire early, and so have only a small pension....I had planned to work longer. But at least I have that. I am 66, but you will see when I post my pic (if I ever get around to it) that I don't look like it at all. One of the cruelties of FM is that we don't look sick....and often look better than well people. STill, it would be worse if looked awful, too, so I'll stop complaining about that!

    THanks for your kindness! It means so much to have this Board!! I had no one who understood until I found this Board. I remember I spent one whole night just marveling that there were other people like me!

    Thanks a lot for your answer.

  13. maps

    maps New Member

    I am totally with you I feel I have lost myself, my sense of humour and zest for life. I have had CFS for about ten years and have gone from a very active life with lots of hobbies and a job to a Zombie. And gone from what I call middle age (50) to a senior citizens It is really hard to take.

    Thankfully I do have a good CFS doctor and a great pysiacrist (sp sorry) but I have never accepted I will not get better and the antidepressants help to keep me stable. Working on Dr Nicholsons plan to try to get rid of mycroplasma. I am also compiling a list of what I will do next, most of the info coming from this board.

    I also have a couple of great kids and three grandchildren. My daughter will pick up whatever I need and my son helps financially.

    I told my daughter that one day I would be my own self again. She asked which one, the one before the divorce the one after the divorce. I thought that was very funny.

    Anyway please know that I and probably most others on this board understand.

  14. ruru1992

    ruru1992 New Member

    My heart really goes out to you! I so identify with missing myself! I miss working, I miss being the one that made everyone else laugh, & I miss my quick wit!! One thing that helps me is that I've learned to enjoy the simple things. Just a smile from someone. Sending a card. Helping someone in the smallest of ways makes me feel better. I've figured out that it's not how much we can do, how much we have,or how we look to others-it's the little things done in love that changes the world! Sending a big hug your way! I'm pretty new to this site, & it means so much that there are others that get it!! God Bless You!!
  15. rachel432

    rachel432 New Member

    i know how you feel! i am in pain all the time, i still work, but all i do is work and sleep. it also seems that i cry all the time. i can't make it out with any of my friends. my husband is in a band and i can't make it to any of his shows. i miss other people. also no one understands what this is like. people think that because you don't look sick on the outside you must be faling it. they don't beleive you are really in pain and totally exhasted. i want my social life back. i want to be able to see my friends and family. most important, i want to be in the front row at my husbands shows. i'm 32 and i feel robbed of my life!
  16. jaltair

    jaltair New Member

    It's needed as part of grieving for the loss of a part of yourself. We all need to do that.

    I'm right there with you my friend, in thought and prayer.

    For my IBS and constipation, I use a natural bulk laxative. But, good ol' prune juice is good as well.

    I did a piece a while back when I was really down and grieving my old self. I'll post it again as I feel most of us can relate.

    Please know you aren't alone in all of this ...

    Warm hugs, Jeannette
  17. tandy

    tandy New Member

    I'm right at home with ya girl!
    kinda stinks. No,..it does stink!
    My hunnys in a Band too so your reply hit home.

    His band plays out every weekend and I have'nt gone in such a long time. (New yrs eve) all the other band members wives/girlfriends go, and they always ask Ray how come I don't come?
    When I use to go I'd have lots of fun~
    I just can't make it anymore. By the time they set up and tear down at the end of the night!!! I'd need a cot to set up in the backroom!! LOL
    not to mention I can't hardly drink anymore. (get sick)

    I was the same age as you when all the hit me too.
    But its been 12 yrs. I feel 80!
    Just wanted to say hi is all~
    and your not alone :)
  18. noraoooo

    noraoooo New Member

    it strange this thing we have. sorry i've no answere I to yous'ed to be a ballet dancer with the scottish school of ballet and now like you feel frustrated with pain and lack of movement it just won,t go. ive tried all different drugs prescibed by my g.p. so far after nearly five years nothing has helped we are limited here in the u.k. by what we are given and what drugs are licensed here but my latest one given three weeks ago is useless so its another visit to the doctors.
    I had a great night out in febuary pain and all i went to see river dance god how i envy these dancers they are fantastic brought back memories that this horrible illness can,t take away. big hugs to you from over the pond

  19. marw

    marw New Member

    Hello Everyone!

    Oh, your posts to me are so moving! I didn't know when I started this thread what a grand thing it would be! Or how much I would learn, or how I would identify with each or you! In some ways it broke my heart. But in others, it made me whole again.

    I have cried so much reading these that I have to stop now and then, to take a break. These are good tears. These are tears of one who has found others, who can feel for others, and not just feel for myself.

    I wish I could take this disease away for all of you. I wish I could take it away for myself. Some of you are so much younger than me, I cannot imagine this....to face your life with this....not that it is easy to face it at any age. But since we cannot at the moment change it, I am so grateful to know you, to not be alone anymore, and to have empathy and sympathy for the way we live. And also I am grateful for the many pieces of good advice and the information I get here. This is also such a positive and hopeful place to be.

    I wish I could write long letters to each of you individually, but since I can't, I still want to mention some things:

    Maps, I feel for you. I am not too far from your age, and I know the shock of finding this out. Somehow we expected more....the best times were just around the corner, and they didn't happen.

    Ruru1992, This is so true about giving a smile, writing to a friend, the little things to do each day....this has helped me. It is something to cling to also when we are down.

    Rachel432, I feel robbed, too. That's exactly how I feel. If we can just find a way not to feel this way. This is one of my goals. I don't know yet how to achieve it, but there must be some way. I cannot even imagine being 32 years old with this disease. I admire your courage, even if you don't think you have it, you do!!
    I am learning a lot here, and maybe we can do it. THe problem is the memory....even when I write things down to help me, I forget them later.
    Well, maybe we need to start some humor about this, as weird as that would sound, and this was to be an empathy thread, not a humor thread. But later I am going to start a humor thread, too. I saw one of those one time, where a woman sid she found her sneakers in the fridge...at the time I didn't think humor was apropriate, but I'm changing my mind. I cannot remember all that you said, so I hope I have not written an inappropriate reply here. I feel for you so much. Yours is one of the places I had to stop and cry....I do care so much, for you and the others here.
    One more thing...my father played in a band. I grew up in a stroller at the clubs part of the time. This didn't stunt me, it made me better. My Mom always went with him. How you must want to do this. And to feel well when you do! I am so sorry.

    Wamps, thanks for all that good info on the laxatives! Yes, doing without the pain meds just puts me over the top. I had planned to try to get my doc to take off Vicodin and put me on a time-released morphine. The thing is that the one I tried...the Fentanyl patch was too strong, and I ended up at ER. I have tried Senna, but I might not have tried long enough. I have also tried MOM's and other things, without success. I hadn't realize there are so many, however, so I'll keep trying. thank you for that hope!! Gosh, it would help so much!

    jaltair, thank you for your wonderful article! I read it and copied it. Indeed, I wish I could print this whole thread out, just to reread now and then! But maybe I can just pull it up. Yes, it is important to grieve. I think I hadn't let myself do that enough until now. You are helping me do that.

    Tandy, as I said my father was in a band, also. ANd my Mom went with him. 12 years? You had this 12 years? OMG! ANd you have persevered all this time. YOu are to be commended. I admire you. I know it has been horrible, but you are strong....I hope I can be like you.

    Elle, another DANCER!! Yea!! I love the Scottish ballet and the river dance god. It is a special agony (and probably a lot of the anxiety) not to be able to move anymore, like we are used to doing. I've had a lot of trouble accepting this. Although, I did have some practice at accepting it before I got the FMS. I had herniated disks in my back, which really put a stop to the ballet, but I could still do other dance forms. Now it seems like I cannot do any. Still, I go to the gym and do those horrible exercises, which ARE NOT DANCE, but in hopes I will get there yet again. Of course, at my age, not as a pro, but enough to move well and choreogrpah/teach again. Sometimes it is like an ant crawling up a hill...I get an inch from the top and tumble backwards and have to start again. Funny, when I first got the disk problem, I started traveling all the time (another type of moving through space!) but now I cannot do that either. Thanks so much for answering my post.

    Stormyskye, what would we do without your hope? I have read your posts. Many of the supplements and other things are things I have allergies to or which give me Migraine, but what I have figured out, is that I will need to develop something for myself that suits my own cell structure. YOu are a light in the dark sky. Thank you.

    For all who read this....thank you for your HONEST and from your heart answers! You will never know how much they have helped!

    My love and hugs to you all,
    Blessed be,

    [This Message was Edited on 02/27/2006]
    [This Message was Edited on 02/27/2006]
  20. tandy

    tandy New Member

    Lord No!! not 32 yrs!!
    I'd admire me too if I had endured this that long!

    seems long enough tho~
    no,.. you must have read it wrong.
    I got DX at the age of 32. After 2 yrs of pain complaints and drs. shuffling me around.
    I'm 43 now. (feel 88!!) so,.. I've been ill with FM for about 13 yrs. Mild in the beginning,...progressed rapidly over the last 6 yrs.
    Just wanted to correct this.
    Do you still admire me?? LOL ,...... I'm joking~

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