need to vent

Discussion in 'Fibromyalgia Main Forum' started by rbecca47, Sep 15, 2005.

  1. rbecca47

    rbecca47 New Member

    first I will apologies, for venting, but i am so mad right now. i got a call from a friend, to go out with, i told that i didn't feel well and just wanted to stay home, in other words i am in alot of pain,. didn't want to go into that detail with her. She asked what was wrong, so i told her that i have fm. and here it came. She knows a friend of a friend and so that has it and it really isn't that bad. i must have a low torlorence for pain. believe me that is not the cause. my doctors worry cause i do have a high tolorence for pain. so when i am in pain, it is bad. then she comes over to talk me into going with her. she says well you don't look sick. and proceeds to tell me that it is all in my head cause she read it some where that it is a phatom deases. well i didn't go, and i am very tired of lack of support from friends and family.
    thanks for letting me vent. it just seems like i am all alone here. and the lack of sleep and pain like i have never felt before. is unbearable. Becca
  2. PVLady

    PVLady New Member

    I am reading a excellent book called "The Art of Compassion".

    These days many people are incapable of having compassion or "empathy" for others. They only think of themselves and what they want.

    So, if you could not be there for your friend when she wanted to go out, she chose to behave selfishly and think only of herself.

    At the least, her behavior is very aggravating. For you to still be friends with a her, she must have some other good qualities.
    [This Message was Edited on 09/15/2005]
  3. Beckula

    Beckula New Member

    I never know what to do in situations like this...because I am in my 20s, apparently everyone thinks my health is great and I am healthy as a horse. It's not always the case. I also have a real hard time saying "no."

    I am proud that you had the guts to tell her that you didn't feel well and WHY. My husband thinks my FMS is a awful excuse now (sometimes), so he gets so frustrated.

    And you are NOT alone. <<<Gentle hugs>>>>
  4. Sue50

    Sue50 New Member

    I have found out that there are people in my group of friends and family that are "toxic" to me, in order not to make my pain worse or go into a flare I need to stay away from those people, sometimes it is difficult to let a relationship go but we need to take care of ourselves when we are sick.
  5. 123sandra

    123sandra New Member

    I had the same reaction from a girl I go to the bingo with. She'd noticed me limping coming back to my seat and asked if I'd hurt my leg, I told her my back was killing and that it was just the FMS. These were her words, " My friend Sue's got that , BUT SHE'S in a lot of PAIN!!" Apparently Sue stays in bed a lot because of the pain, she's not got a family to see to like I have! I'd LOVE to be able to stay in bed but it's just not possible.
    I AM NOT knocking anyone else with this DD by just coming out with the comment I have just made because this DD HAS laid me up in bed a couple of times, I've got a high pain thresh-hold, and that's official!! The Specialist who did the 20 to 60 injection marks on my back, shoulders, arms, neck legs and skull told me that because I didn't scream or shout while they were being done. And boy were they EXCRUCIATINGLY PAINFUL.
    The best thing you can do with this 'friend' is to show her this site and the comments peolpe make on it. WE ALL CAN'T be WRONG!!!
    SORRY FOLKS. I've just ended up venting!!
    It makes me sooo mad the ignorance of some 'friends'
    And all that was because I DON'T keep telling everyone that I am in pain (except on here of-course)
  6. orachel

    orachel New Member

    That really sucks. I totally know what you're dealing with re the pain and lack of sleep (hey, I'm on this board at 5:30 am!)...I'm just dying lately, but heres hoping we both get thru this rough time, and VERY soon. I don'k know about you, but I am one pooped chick!

    As for your friend...I can't imagine what that must have felt like for you to hear, and while you're at your toughest point, physically. But here's the thing. I'd send your friend an article by email about the true nature of our disease (I have a few I can email you if you like), along with a little note about how you know she was just trying to help, but her information about FM is very outdated and difficult for those of us who are really sick to hear. Just tell her that you wanted to send her some real information on FM because she's your friend and you want to be honest with her, and it hurts your feelings when she calls your illness a "phantom disease" even if it is based on lack of knowledge. I'd end by telling her you value her friendship, but its important to you that she respect you and what you're going through physically.

    I'd give her a few days to read the article, and stew in her own juices, and see what happens.

    I want you to know that you're not alone here...not at all. We've all had to deal with ignorance, intolerance, and rudeness from people in our life, and it sucks royally, but you can count on us, right? Hang in there, hon....I had the first rheumatologist I saw convince my wonderful husband (who is the most important person in my life, and virtually my only friend or family in this city!) that FM was a "mental illness"! Can you believe that?! A mental illness, my foot! Anyhow, I went thru something similar hurting and being exhausted and being so emotionally devastated that my DH was thinking that way about FM. But over last few weeks, I've been gradually educating him with articles and stuff, and now he's incredibly supportive.

    So, hang in there, and we're all here if you need to chat, or vent, or whatever. Oh, and go read the OT Soap made me laugh till I cried, so might perk you up at bit!

    Much love and gentle hugs coming your way!

  7. EllenComstock

    EllenComstock New Member

    I always feel so frustrated when I read posts like yours. Any way you could print out this post and our responses and send it to her? Someone else suggested sending her info on FMS, which I think is a good idea, too.

    Maybe someday people will realize that just because you have both arms and legs and are walking (however slowly) around, that you can still be disabled and not feeling well.

    If your friend is not going to be supportive to you, maybe you need to end this relationship.

  8. rbecca47

    rbecca47 New Member

    thanks to all of you. i know that i am not alone, when i came to this board, i was supprised on the support here. i am sorry that all of you have this DD, and yes please send me any emails on the DD. My 10 yr. old, has been trying to understand this, and reads every thing she can. So thankyou so much. and my friend, i told her to check out this sight. she doesn't have computer. goes to library once in awhile. so we will see, if she checks this out. she doesnt have time to use my puter.
  9. orachel

    orachel New Member

    I'd love to send you some good articles hon...I also have some amazing research studies and stuff if you want that, too...but the research is like 70pgs long. Super interesting and useful, though.

    Articles aren't nearly that long, though! ;)

    I don't have the ability to send them to you right now cuz I don't have your email address. But I know theres a way to ask the proctor to exchange our email addresses, but I can't figure out how to contact the moderator or ask him/her a question! And I know its against rules to post personal email addy's here....If you know how to get in touch with the proctor, please do so and ask her/him to exchange our addresses so I can zip them right over to you.

    Also...I LOVE the idea about printing all this and sharing with your friend. But, and this is just totally my opinion, I think that would be a great thing to do after you hear back from her after you send her some information. Only thinking that bc you're clearly pretty upset with her and feeling TERRIBLE about it in your post, and would be a good thing to share after you guys have started "healing" your relationship, a bit. I wouldn't want her to think we're all attacking her or calling her ignorant...most people not faced with FM or CFS do have those ideas, unfortunately.

    Look forward to hearing from you (or the moderator?) soon so I can get you the information.

    Feel better!

    Oh, and I know what you mean about sleep and pain getting worse and worse. I'm on this board so much lately bc of the support, and honestly I feel like ya'll are holding me up from total physical collapse...I just wanna curl into a ball and cry with the pain, but that's not going to do me (or you!) any good...and would probably make our backs hurt! LOL

  10. orachel

    orachel New Member

    ...explaining this DD to your daughter. It's right on here...just do a search for "SPOON THEORY" and you can print it. I'm planning to use the concept to explain my situation to my stepkids (5,7,8) because its such a "tangible" way to explain what we go thru. Of course, I'm going to substitute playing with toys for gym, and going to Chuck e Cheeses, for work...might make it easier for them to understand. Also going to use colored popsicle sticks in lieu of spoons. Its a great article to explain FM or CFS to anyone, actually..that might be the perfect thing to send to your confused friend!
  11. Mareeok

    Mareeok New Member

    Chronic pain is not for whimps but if you don't have it you can't relate. I've had a number of people tell me, "You look good". It's so frustrating. I also have a high pain threshold. I also deliberatly hid it from a now ex-husband who blamed me for exagerating. I had to learn to show my pain in order to be believed. How sick is that! My attitude about friends who can't understand chronic pain and fatigue is to try and be compassionate towards THEM and glad they don't understand because the only way they could really understand is to have it also. I wouldn't want good people to suffer the way we do. However, I do know a few people who I'd enjoy them getting it for about one month to take them down a peg.
  12. fivesue

    fivesue New Member

    Friends...they tell you how you don't look sick, how someone else has it and doesn't have this problem, how you have a low pain tolerance and how if you'd just get out, you'd veel better. I've heard it all before.

    And, I have just drifted away from these "friends." I have enough to deal with without these "superion intellectual and medical informed" friends driving me NUTS!

    It's like not only do we have pain and fatigue, but we all have normal lives also with family, jobs, etc. My day is dying, my FIL died in January, my children are on their own but still need attention, husband with job and required social events, etc. We surely don't need to deal with people who put us down.

    I'm sorry. I hope that you can work this out, but please don't be bullied or made to feel guilty for doing what you need to do for your emotional and physical health.

  13. orachel

    orachel New Member

    ...and they're all just fine.
    Or variations on same...girl at my office has it, look at how well she's doing....
    or best yet...Oh, a buddy of mine used to have that, but she went to see a psychiatrist and they "cured" it

  14. ldbgcoleman

    ldbgcoleman New Member

    Maybe you can compare it to MS. Some with MS are in wheel chairs and some seem fine. There are varying degrees of this illness!

    I try to look at the good in people. She may not know how much she hurt you. I look at others totally different now that I have FM. My friends husband always wore earplugs when we went to concerts in the park which were'nt really that loud. He also hated to get together, noisy restaurants ect.. and never ordered anything to eat. We all thought he was nice but a little strange.

    In April we had dinner with this couple. I mentioned FM and he said he had it. Everything feel into place and I felt deeply ashamed for judgeing him. I had always considered myself non judgementaland very caring. You never know what another person is going through no matter how good they seem to have it. Despite all the bad that comes with this DD it has humbled me and taught me alot.

    I think maybe give your friend the benefit of the doubt and explain how you feel. Don't expect her to read your mind. Hopefully she didn't mean to be insensitive. Take Care and Good Luck! Lynn