Please let me know what you think ...

Discussion in 'Fibromyalgia Main Forum' started by Adl123, Feb 12, 2006.

  1. Adl123

    Adl123 New Member

    Dear All,
    I've mentioned my meditation group before. A small group of about 12, who are really good people.

    Last week one of them phoned me and asked me to tell her what was wrong with me. I guess she was wondering because I aven't gone all flu season. I gave her a short summary, but I didn't go into the effects of these DD's.

    I was thinking that it would be a good idea to give her the "spoons" piece that was on the board, to help her understand. I would also go into some of the effects of these illnesses.

    Somehow, I hesitate to do this. I guess my desire to hide in the background is causing this feeling, but if I can help anyone understand these DD's, it seems like it would be a good thing.

    So, I come to ask what you think.
    I'll be grateful for any responses.

    Thanks,
    Terry

    [This Message was Edited on 02/12/2006]
  2. bettydroop

    bettydroop New Member

    I dont know what the spoons thing is?? If you could explain Id love to give feedback for you .
  3. cjr2003

    cjr2003 New Member

    Hi Terry :>) I think your hesitation in this decision is

    very understandable. I have read the "Spoons" piece and

    have a copy of it for myself, along with the "The thief of

    many lives" piece, and found each one quite moving. I

    myself have only showed one of those to my mom, and even in

    sharing it with her, I do not believe that she truly

    understood how much that story relates to my every day life

    and thoughts - how powerful the words really were to me.

    Unfortunately, I have only found that by divulging to

    others just how disabling this disease is ,usually only

    brings me regret and emotional pain one way or the other.

    Except for sharing with those on this site, that is! I have

    found that after sharing on this site, there truly are

    others out there that sincerely care and truly understand

    what it is that we all are going through on a daily basis.

    I have found that I have to be very careful, even with my

    closest of friends, just how much I divulge. Their

    reactions to my openness can be so diappointing, and I have

    a hard time dealing with that disappointing aspect of this

    illness. Most of my friends who do not have fibro. can

    only keep up the conversation on "how I really am doing"

    for a few minutes. They just cannot relate/tolerate/deal

    with the reality of what I go through, and that is very

    painful many a times. But, I think in my mind, If you are

    going to ask me how I am doing with my fibro, you should at

    least try to relate/understand etc. I have not sent

    the "Spoons" piece or the other one because I get so tired

    of the reactions from just regular conversations. The more

    I share - the more distant some of them seem to become in

    our relationship. I think some of them, by just ignorance,

    truly think I am a hypochondriac, and that just breaks my

    heart of course, knowing full well, the reality of my pain,

    but, that is that. I think it just all depends on the

    person when it comes to sharing something like that. I

    think for some, it will really open their eyes to what we

    are going through, if they truly are interested in "you",

    and how you really are, if they truly care about you.

    Then, others, I think, just look at you with this look of

    blankness, and they say things like "Well, maybe one day

    you'll get all better!" - when people say things like

    that I just want to say, "Yes, and maybe tomorrow they will

    find a cure for cancer!" OOOOh - I could really get on my

    soap box on that one!!!! I have learned that I have to be

    very careful with how much I share about my illness -

    people can be so thoughtless sometimes, and then you regret

    sharing anything with them. But, like I said also, there

    are those out there who do really care and these stories

    like "Spoons" , can really impact their view of just how

    real this disease is in your life! :>) Hope this helps!

    LOL Carla
    [This Message was Edited on 02/12/2006]
  4. Adl123

    Adl123 New Member

    Dear Betty,
    The "Spoons" article is one that was on the message board. It used spoons as metaphores for amounts of energy we have. The idea being, that each of us with one or more of these DD's has only a certain amount of spoons (bits of energy), and we have to calculate how we are going to use them.

    It gives a good idea of how is is to be chronically ill, and shows how we can't just do things the way wwe could when we were well. We have to think ahead, and choose our activities.

    I thought of giving her this, because she was having trouble understanding why I do't go to meditation all through the flu season.

    People don't understand that someone with a very por immune system can't just go around groups of people, many of whom are wlaking around with colds and flu bugs. Ordinary people probably wouldn't catch theses bugs, but people with bad immune systems will. And when one can't take any antibiotics, and has congestive heart faluse, it becomes a serious issue..

    I would be interested in your thoughts.

    Thanks,
    Terry
  5. petesdragon

    petesdragon New Member

    I would love to read the thief of many lives. I made copies of the spoons essay and gave one to each of my children and close friends. I gave one to my psychologist and she made copies for many of her clients. It helps people understand so much more.
  6. Adl123

    Adl123 New Member

    Hi,
    Sorry, I don't know anything about the writing you mention. Maybe someone else will.

    Good luck,
    Terry
  7. claudiaw

    claudiaw New Member

    that I sent to family hoping it would help them understand. It didn't.:( That's just my family though. Your group may be different.
    My family just wants me to be better, so they try to give "advice" that is not helpful, though they think it is.:)
    I guess you have to decide if you are up to answering a lot of questions and trying to explain your condition to some who probably won't understand and maybe even some who don't want to understand.
    You know them and yourself best. Good luck!:)
    Claudia
  8. cjr2003

    cjr2003 New Member

    Hi! :>) Put " The Thief of Many Lives" in your search box, and then hit "go" at the top of the screen to the right of the search box, and it will send u to where it is available for u to read! To me, it is the best one! :>) LOL Carla
  9. Adl123

    Adl123 New Member

    Thank you all, again, for your responses. I really appreciate the tiime you took and the information you gave me. I'll do some thinking.

    Peace,
    Terry
  10. PVLady

    PVLady New Member

    I guess I am wondering what her response was after you told her about your condition, did she really care? My feeling about sharing personal medical information just depends on who is asking, and why.

    Hopefully your instincts guided you if it was the right thing to do. I would hate to think she was asking out of idle curiosity, or to gossip with other group members.

    You said they are a nice group of people, so hopefully she was genuinely interested.

    It sort of leaves you vunerable in some way once you share personal information with someone - I don't know..... it just all depends on where she was coming from, and how she responded.

  11. marw

    marw New Member

    I don't really know, but will relate my experience (and conclusion.) I have a piece called "Letter to the World of Healthy People"...it is good, easy to read, and explicit without sounding pitying. A good piece, in other words. But when I give it to people, they either never read it, or don't seem to "get it!" I might try the other pieces I've just heard of here.

    When this didn't work well, I sent for the free brochure this web site offers, but this had no effect either. I think the only people who really want information are people who are close to you and who really, really love you. Many friends, and maybe some family, either through fear or denial, just won't really understand. I lost a very good friend this way.

    So my present plan is to say nothing, but still"spoon" my energy, or to say a little about Fibro, but it's up to them if they get it or not. I still have to control the energy output. Only if they become very interested and that interest seems real, do I want to go into detail on this. I guess I sound cynical. But I got pretty hurt over this a few times.

    I didn't really get angry, however, except about my aunt. She has congestive heart failure, and all her friends know this. Before she got quite so weak....my aunt is 88...she still had bridge parties, but eveyone knew not to come if they had a cold. What happens, this woman shows up sick, and running a fever, and tries to pass it off as not contagious. My aunt was back in the hospital several weeks that time. She doesn't host the party any more.

    It would be a better world if people were more considerate, but they are not....not out of evil, but just out of ignorance...or maybe self-centeredness.

    If we continue to educate them, eventually everyone will know, and know to be kind, so I think that is part of our job. Still we must do it in such a way as not to hurt ourselves.

    This probably is not a lot of help for you, but thank you for letting me say it.

    Good luck with what you say it, and would you let us know?

    Best wishes,
    Margaret

    P.S. Does anyone want me to post the "Letter to the Healthy World?" or have you already seen it.
  12. Adl123

    Adl123 New Member

    for your sage advice.

    To Margaret: I agree with you. I ended up sending the info., and the main reason I did so is that I feel that if she asked, she is at least is partly open minded enough to become more educated. So, as she is a woman who has many contacts, she then will be in a position to educate others, somewhere along the way.

    It doesn't really matter what she thinks of me, or if she tells others, and what they think of me. I know she is bound by her religion not to gossip, and I believe she is sincere. Here was a chance for several people to be educated about our illnesses, and I took it.

    Only time will tell. :)

    Peace,
    Terry
  13. bct

    bct Well-Known Member

    I just tell people that my immune system is out of wack and is in a state of overdrive, and that it attacks me if I do too much or get stressed out, or for other unknown reasons.

    If they question me more, I overwhelm them with a long monolog about adrenal fatigue, Hypothalamic malfunction, Mycoplasma, HHV6A, until they get bored -- which is usually pretty darn quickly!

    Best Wishes to you Terry.
    P.S. I heard and saw the first hummingbird of the season this sunny morn!