STruggling w Losses of friends and Reclusive Life

Discussion in 'Fibromyalgia Main Forum' started by MKate, Feb 25, 2007.

  1. MKate

    MKate New Member

    Hi --

    SEveral weeks ago I finally got on the chat room - but only after struggling with anger about the fact that my social life is sooooo limited.....

    My ONE very good friend was just geting on my nerves...cause she says the things that we all hear: "at least you Know what you can do" and "well maybe that job (the only one I've been able to be offerd in 2.5 years) just isn't the right one - they'll be another"......

    If she had been listening to my decline over the last 5 years -- she would know that neither of those statements was true --........

    If I'd have had a forum to share my frustrations about the losses and confusion with this disases (CFS) Maybe I wouldn't have cared whether she understood or not.

    Now, I'm trying to be the "Big Person" yet again - and build her ego up so she has confidence to be in our friendship....I'm tired of being so strong.....I'm tired of hearing other people's lives and understanding - when they really don't get ANY of my minute by minute and hour by hour, and MANY other big financial and health worries -- with NO solutions!!!!

    Yikes ------- will it ever end? To boot, I'm becoming a real recluse.

    MKATE
  2. Shalala

    Shalala New Member

    (((((((((((((((( Hugs for mkate ))))))))))))))))))

    Yeah ... we just don't "fit" into other's lives. People do not understand (and can't begin to comprehend) what we go through on a daily basis.

    I have been reclusive for years. I really don't mind that. I have never been very social. But some folks have a hard time with it. I just wish I could draw and paint and write ... I really miss that. I do genealogy on line. I have met a lot of really neat people. My little buddy kitty cat snuggles up on my lap and I have a laptop computer and I turn on my wonderful heating pad and search away :) It sounds like you just need to vent hun. We all understand. Have you tried sending your friend the letter about FMS?
  3. lilbabe

    lilbabe New Member

    I too, have become reclusive. I'm sure people don't understand why I can't work full time at my age. It bothers me that I can't do the things I see other people do every day I wish I could work full time, meet friends for dinner, have lunch with girlfriends, or some days just clean the snow off of my car without becoming ill.

    I have to work at least two days a week and it's a major thing just preparing to go to work and then hoping I won't be too ill and have to call off and lose the job and the only thing that gives me any selfworth. I can't believe that I'm clearheaded enough to write this . I miss having friends. Sometimes I wish I could have someone here that I could hug who would understand.
  4. medievaldigger

    medievaldigger New Member

    You know, if I've learned one thing it's this. The very kind of people (myself included) who are so drained by FM, are also the ones who allow other people to drain them.
    I don't think anyone can understand what any other person feels, but, when someone says "No" or "I don't feel like it", I take them at face value, because I understand how fatiguing it is to just drive to Wal-Mart sometimes, let alone tend someones children, or scrub a kitchen floor, or even go to a movie.
    What we have to learn to do, is save our energy by saying no to the unimportant things, to the people who don't WANT to take no for an answer and put what energy we have into what really matters.
    Even my grandchildren drain me pretty quickly, and learning to say no, sometimes, allows me to say yes, at others. Trial and error. If you have to hibernate for a month or two, to have a week or two of good, so be it. You are not alone, and if you need to close your life to people who don't truly care about your health, then you can open it for others who know how to give and take
    Good luck!.
  5. medievaldigger

    medievaldigger New Member

    You know my sister refuses to beleive that I am EVER in pain or sick. She says things like "you don't look sick" or "Oh, I forgot you have that thing..." so thanks all who are here and understand what each of us goes through, alone at home, but not in life!
    Anastacia
  6. Shalala

    Shalala New Member

    It is hard to come up with a hobby since we have so many things affecting us. Chat rooms can be nice but I have found that several people all seem to know each other and have a conversation and you have a hard time joining in. This chat room was a little friendlier than another Fibro chat room. Good luck Hun
  7. Scapper

    Scapper New Member

    I struggle with this greatly.

    I'm currently struggling with not knowing if I'm being too needy and expecting my family to show more concern.

    I feel as if everyone just goes about their lives and not one of my brothers or sisters (no friends) ever call just to see how I am.

    I realize everyone's lives seem to be so full but even just a quick call.....something.

    I'm very reclusive myself at this point. I've had CFS for 12 years now.

    I don't know if the pain of someone close not understanding what you're going through would ever be "easy" -- even if you are getting support here or elsewhere. I think it's a natural thing to want those close to us to "understand," or at least TRY to empathize in some way.

    I guess I'll take my own advice and let some of my family know how I'm feeling.....maybe this would work with your close friend too.....if for nothing else, to make YOU feel better.

    Not easy being chronically ill.

    scapper
  8. charliesangel

    charliesangel New Member

    Today I was supposed to ride to a city 3 hours away with 2 friends that were taking a third person for a doctors visit. One of the two friends has almost become a stalker. She is changing her psych meds but she constantly calls--like 4 calls a day and e-mails me several times a day. When she is here she constantly is hugging me and touching me (rubbing my shoulder, holding hands) and trying to help in anyway that she can.

    It is hard for me to get up and see who is calling unless I take the phone to bed with me which really defeats the purpose of rest. I finally told her one hug per visit, one phone call a day and e-mail was OK. Now she is freaking out.I am just not a touchy feely sort of person and I certainly do not have the strengh to handle all of her emotions.

    Anyway, today my back muscles went out really bad so I couldn't go anyway and now she thinks I am mad at her. I had to have my husband take me to the chiropracter. We have the grandchildren two afternoons and evenings this week because the baby-sitter is sick. Then a friend who I love dearly although we have nothing in common but she never gets to get a word in edgewise at home and I listen to her and she listens to me called and wanted to come over. I said that's fine if she wanted to sit on the bed and talk over grandchildren and she accused me (for the second time) of trying to avoid her.

    I am losing friends fast and another one quit calling after Christmas. I just get tired trying to make friends and then trying to keep them.

    When I read this message I learned there are more of us out there in the same boat. Thanks for listening.

  9. Scapper

    Scapper New Member

    I decided to let one of my sisters know that my feelings have been hurt.....after I responded to this thread it sort of gave me the push I needed.

    So thanks.

    I feel A LOT better that we spoke.....cried it all out....my being this sick is definitely difficult on my family as well. It's painful seeing someone you love suffer for so long.....this illness is not easy from any angle!

    As far as my other family members, I won't hold my breath for my phone to ring! I'll have to just understand that they're incapable of grasping CFS and to what degree I struggle....it hurts, but expecting them to be "different" is hurting me even more.

    So, just thought I'd "share" that I got SOME of my feelings off my chest with the closest person to me in my life (my sister).

    Hope this helps someone else in their struggle!

    Did I mention how much I hate this illness :)

    scapper
  10. MKate

    MKate New Member

    HI -

    I soo enjoyed reading all of your responses! I just found how to find my "Thread" today, and am happy to talk with you all.

    Yes, I feel the isolation at work/public too --I do work, but VERY carefully and try to limit it to 20/30 hours per week....no one knows why I don't go out or have to decline opportunities.....it makes me look like I'm not interested in them. I am, however, getting better about saying -- "you know I'd love to - but I have an appointment with the couch to rest tonight - can we do lunch another time??" That seems to let people know I care.

    New friends/seasons? Yes, they do come and go with this disease. I left quite a few 10 years ago, when the first 4 years of CFS I found I'd lost so many friends who didn't call me at all - cause I couldn't bike ride or ski anymore. The friendships weren't strong or deep enough to care about me as a person - just as a companion.

    Since then, I've chosen friends very carefully. This last one- is dealing with her own family issues.....she has difficulty with any conflict or confrontation -- the slightest -- so when I shared my frustrations....she just backed right off - it all has to be sickening sweet because her family background doesn't allow her the confidence that it's not about her....I'm praying for her.

    This last friend who I was so close to -- is in a town 3 hours away. Moving away has dramatically changed our dynamics. I've learned that I know how to support her and draw her out -- but she is uncomfortable with the CFS...The letters and info may be helpful to her though! Thanks for the idea. She really is loving and does care. I should do that.

    My activities: I've found that joining a women's PEO group in my hometown -- with alot of "older" ladies has been wonderful. Just the last month I've decided that these are really great women - and worthy of my time. They're kind, thoughtful, and yet don't demand. I can attend the twice monthly meetings (plan ahead to do so) and help by calling them or sending cards. It is VERY nice. My mom is in it too - and since she's limited by her need for caregivers it is very meaningful to do this with her while I can.

    Other friends -- I'm back in my childhood hometown, so I have 2 old friends that I grew up with -- and we're becoming more acquainted. Not demading - but very kind. I may see them a few times / year - but it's just nice that they really care and understand my limitations....!

    Then, I have a newer friend who doesn't "get" the CFS. I'm very careful with her - but probably goofed yesterday in talking about my search for a physician.....boring.....I'm a slow learner...It's hard to talk about myself, since so much of my time is about managing the disease. I don't have intersting things to share!??? What do you all do?

    Mom and Brother live here. I see them about 2 times / month and talk with mom every few days. It has been nice to have that support again. I moved home because of the CFS and these isolation issues. Been a big help.

    Blessings to you all. Loving the chat and to get to know you all better. Thank you!!!!!

    Blessings. Love - Kate