Disability, power judgement of myself, by others

Discussion in 'Fibromyalgia Main Forum' started by ephemera, Jun 25, 2008.

  1. ephemera

    ephemera New Member

    Recently a long term on & off friend (who reappears like a penny - good or bad) & I spoke on the phone. She told me I had "worked the system" to get my SSDI. I was totally blind sided by this opinion & totally devalued by her judgement.

    While at the doctor's office yesterday I mentioned this incident. My doctor said, "You still don't see yourself as disabled & you haven't found your new self."

    Wow, I was surprised by his comments; deep down I know they're mostly true. I intensely dislike labels, have a hard time with people having power over me & much of my life has been spent working & carving out an life identity & friendships that related to my work, education or travels.

    I don't travel or work now, & have major cognitive problems that make me feel as if I'd have problems with junior high book reports. I'm definitely off the social get togethers list. (I'd rather watch a butterfly on a flower than suffer through dinner, anyway...) And I've definitely fallen out of the middle class into the lower depths of the working class (as defined by economics, at least).

    How are others here dealing with their changes? I know there was a similar thread some time ago that only gathered a few responses.
  2. lrning2cope

    lrning2cope New Member

    I haven't figured anything out about my " new life " either. I would love to see how people have built a new way of living with CFS/ME/FMS.

    I used to be very athletic and an outdoors person . Now it is mainly indoors. Even driving in the car to be sort of outside is tiring and causes pain .

    Does anyone have ways that they can share on turning your life into something that is satisfying even through illness ?

    Thank you for bringing this up , emphemera ! If I discover anything , I will certainly share it here.

  3. Khalyal

    Khalyal New Member

    Yeah. This is the biggest challenge I've ever had to face in my life. How do you go from being a workaholic, a juggler of plates, a solver of problems, a complete and entire independant individual, ....to being someone who can't get to the bathroom by themself on the worst days? How do you learn to accept that you are no longer in control of how much money you earn, or what plans you can make?

    I find that I fight this one tooth and nail. It makes me unpleasant, this struggle against my new reality. I have to constantly adjust and readjust my outlook. I chant to myself over and over, "calm the brain, calm the brain", because the circular thinking pattern that I now have does not allow me to solve this dilemma, only to ruminate on it incessantly.

    I need help and I resent that to the bottom of my being. I have made some fearless decisions in my life because I always had an absolute faith in my own ability to think and plan my way through obstacles. Now, I hate change because I know my brain's ability to adapt and assimilate are not up to par and I'm going to have to struggle to learn new routines.

    This disease has been a harsh lesson-master. I've learned that I don't need "stuff", that I can live on a lot less money than I thought I could, that I should never judge anyone based on how wrong other people are when they judge me. I've tried to take that and be thankful that I've been given the opportunity to learn patience and compassion and gratitude. These are things I must learn in order to be able to pull through with this DD. If I can hang on to that thought, I can do this.

    Some days, though, I'm just plain angry.

  4. ephemera

    ephemera New Member

    for holly & khaly,

    thanks, yes, you both tapped into the same shared conflicts.

    do you think the title of the post should be changed, maybe it seems too vague?

    best thoughts to all
  5. Honora88

    Honora88 Member

    Your friend may have felt that you are fine because you see . yourself that way. But really, do you need friends like that?

    She sounds awful. You have been through enough and don't need additional negativity.

  6. DeborahLynn

    DeborahLynn Member

    but I feel I can really relate to what your speaking of. I think I've finally come to terms with the "new me", after having these diseases for six years. I was diagnosed in January of '07, and I find it is easier to cope with now that I at least know what it is.

    I have had to totally re-arrange my life, kicking and screaming against it the whole way. Finally, the Lord helped me to accept the joys that are left, now that everything else has been taken away. I can say that I find just as much joy and fulfillment in those little, quiet things, as I once did in the giant accomplishments.

    The day before my disability hearing (this past Tuesday), a friend called to talk to me. She sounded truly interested and concerned about me. Then she started in on the same old lie that Chronic Fatigue Syndrome and Fibromyalgia Syndrome are caused by depression, and that if I'd just try antidepressants, I'd be cured. No matter how hard I have tried to explain to her in the past, she still insists on clinging to her own ideas instead of researching to find out if she really does know what she's talking about.

    I was quite frustrated by this conversation. But when I sat back and really looked at it, I realized that it didn't hurt me like it once would have! I now realize the I'm the one who should feel sorry for her, not the other way around. At least I've studied about it, and know my facts. She hasn't, and is speaking about something she really knows little about.

    I now don't really care if she ever understands. Before, I would have - and come to think of it, in the past I actually did give her information and websites to look at, etc. I have moved on in my understanding; she has not, and may never. I'm o.k. with that, because I know the truth. She can keep on blinding herself if she wants to.

    I have a loving husband and family to run to and surround myself with their support. Some people don't have that, and I can't imagine how hard my life would be if I didn't have such wonderful support.

    Love and Prayers,

  7. texangal81

    texangal81 New Member

    (Turn and face the strain)
    Don't want to be a richer man
    (Turn and face the strain)
    Just gonna have to be a different man
    Time may change me
    But I can't trace time

    (entire lyrics can be found at:http://www.lyricsdepot.com/david-bowie/changes.html)

    I cry a lot. This is new to me. I find strength in music -very strange indeed. Why anyone in their right mind would think that this is something we would choose is beyond me. God gave me an incredible knack for computers at 40. Has He decided that it was to be for only 8 years? I don't have the answer. All I know is that by October 2005 I was a highly regarded, admired, and well-liked Technical Support Analyst at a major company. I had gone from a divorced, single mom, making a minor living as a secretary to mover and shaker in 6 short years.

    The mind that was always inside of me was unleashed and was it ever powerful. Wow, I had no idea I was that smart. I was finally the woman that I had known existed all of those years but was just trapped beneath societal expectations and emotional abuse. I left the glory I had built in 2005 for one reason - greed. I had begun to believe my own press. I was too good for what I was being paid.

    Well what goes around comes around. The last three years have been hell. That says it all. As they say I've gone from romper room to the board room. And now I'm in the bedroom. I cry a lot as the reality of all this hits me. I'm also having a major flare. Next week might very well find me back on the phone making sure that everyone who enjoys using the convenience of an ATM will be able to continuing doing so because I'm the one fixing the problem you never knew existed......

  8. whoachief

    whoachief New Member

    I fought it for a long time but have recently (last 2 years of so) some to terms with the fact that I AM DISABLED! I cannot do the things I used to do, I cannot go the places I used to go, I cannot read books like I used to. Reading a book to me is so difficult because whatever I don't read in one sitting I cannot remember so I end up reading the same thing over & over again - so frustrating! I finally gave up & read short stories (2-3 pages max) instead. There are days I am still very angry about this "change" but I have learned to TRY not to let things I have no control over stress me out. I don't have any control over the fact that I can't read books anymore so stressing about it is going to do absolutely nothing! I think a lot of people have a "defining moment" when they ACCEPT this - mine was pretty much when I lost both my parents within 6 months of each other. I like to believe they "left me" their patience & tolerance and that is what helped me. I hope that you are able to find peace soon - it is a difficult journey.
  9. hander1936

    hander1936 New Member

    Hi, I've had fibro/cf for many years (I'm 72 years old) and was diagnosed in 1997. Most of us have had to address this issue and I've attempted to explain to my friends and family with only moderate success. I have a dear niece who told me that the only way to "get it" is to have it. In other words, quit trying to help people understand -- they can't.

    I don't recommend my coping methods to everyone, however, I have found that limited socializing is best for me. I am very paticular about "who" I spend my time with because I don't want to waste my "up time" with people who make me feel I have to prove why I can't do certain things. My social life has been reduced to church family and my grandchildren (their parents can participate if we allow them). "smiles"

    Yes, you are very blessed to have a loving family. I have been a widow for 25 years and have come to realize that I'm pretty good company.

    As for your "friend," she just doesn't "get it." No amount of explaining will turn her thinking around -- she'll have to come (or not) to her own understanding. I know the losses experienced with this dis-ease are great but on the good side, you find out who really loves you.

    I find great satisfaction in my church family, although I've had to scale back my participation lately.

    I hope I've answered some of your concerns. If not, don't hesitate to email me.

    God Bless,


  10. momof4kids68

    momof4kids68 New Member

    -They Can't

    How true those words are.

    I am lucky too. I have a wonderful husband who supports me 100%. He stands between me and anyone who doesn't understand the difficulties that we have with this disease.

    He has watched his active, cheerful, energetic wife who worked full time and volunteered with girl/boy scouts, pta, church, etc. turn into someone that on most days can't get off the couch.

    IF anyone thinks that this is "all in your head" or "you're just depressed" they are crazy.

    NO ONE would want to give up a full life with their family to just be a whiner or hyperchondriac.

    Sorry, but this subject makes me angry. I'd like to just smack them on their forehead and say "trade bodies with me for a day and then tell me about my illness". They speak out of their behinds.
    [This Message was Edited on 06/26/2008]
    [This Message was Edited on 06/26/2008]
  11. ephemera

    ephemera New Member

    Reading everyone's comments, I am reminded once again of how similar we all are.

    Given all our differences, we travel such similar paths in finding ways to cope & hopefully thrive more than survive. (At least that can be a goal for the future.)

    Everyone here offers experiences, advice, suggestions, etc. our daily feelings, thoughts, hopes & dreams all depend on our health.

    Finding ways to learn from each other surely helps us cope with today & face tomorrow with less anxiety.

    best thoughts to all
  12. Rafiki

    Rafiki New Member

    for everyone.

    I'm simply not the person I was while struggling along in my 85% remission. (I'm certainly not the person I was before getting ill 28 years ago!) I don't really go anywhere, I don't have an exciting (or any) career, I'm not a social powerhouse which is just as well because I don't know how to answer the question, "What do you do?" which so often means: who are you, where do you fit in the scheme of things, what contribution are you making, how important are you, are you worthy of my time...? I can no longer answer any of those questions with a nice tidy description of how I choose to spend my working life.

    It's not the only question I can no longer answer easily. "How are you?" is a really loaded question which I now dread. "Will you come over for dinner?" also throws me into a panic. "What are you doing later?" is often an opportunity for embarrassment because I'll be lying down in front of the telly.

    The only question I find I actually have a better answer for now than I did before my hectic life was brought to a standstill is: Who are you? I can now answer that question. Not briefly with my resume nor with a lively demonstration or an interpretive dance. But, I do have a much better idea who I really am under all the noise and nonsense.

    I'm not sure I would have ever known myself without the gift of disability. Yes, I would accept ability again, now. I'd love to take my new self out into the world. I hope to do that one day soon. But, it is absolutely without question that I would always have been running too fast away from myself to ever really know who I was. I thought I was my resume, too.

    I think we all come to this through different means. For me, as a single person, it was isolation and meditation. I had time to study, deeply, a philosophy and practice that had long appealed to me. It is a philosophy which has, traditionally, involved a time - sometimes a life - of isolation and contemplation. I had it thrust upon me.

    I'm lucky in that this philosophy also gives fairly high value to taking a vow of poverty! Bonus!!!

    And, finally, while I have not been around for my old social circle and I know I have upset many old friends, I have been there for my stepkids in a very focused way that would not have been possible in my old life.

    I think I could probably hang onto this self were I challenged by a healthy body now. I'm not 100% sure, though, and this new self is much more evolved than my old, noisy, rattling, always running self. Maybe it's not so terrible that I'm still disabled by illness. I may not have quite learned everything it has to teach me, yet. Nevertheless, I'm really willing to give it a go :~)

    Peace out,