I went to my first ever CFS/FMS support group meeting yesterday

Discussion in 'Fibromyalgia Main Forum' started by lease79, Aug 14, 2003.

  1. lease79

    lease79 New Member

    And I am mighty proud of myself. For someone who suffers from Panic Attacks in public & who was mildly agoraphobic a year ago, this was a major thing for me ;)

    Hubby Jason drove myself & his younger brother (who also has CFS) to the meeting, as I nolonger drive distances & the meeting was over an hours drive away.
    Hubby's brother also doesn't leave the house much, or associate with other people much, so I think that this was good for him too.

    When we got there Jason took the older children shopping, so there was just my Brother in Law, Me & baby Ethan going into the meeting.

    The woman that usually ran the meetings wasn't there, as she has CFS too & was sick, so the meeting was a little disorganised.

    The topic for the day was Fibromyalgia & some wonderful women with Fibro had come along to give a talk about it. They had both had the condition for about 15 years & had been through all the trials & emotions with it. They looked wonderful for two women who obviously are in alot of pain & were truly beautiful people.

    Though the room was a bit over warm (it was held in a hospital) & Mark (Brother in Law) & I both got a bit over heated & needed to go get air, all in all I felt that the meeting was productive for both of us. I knew alot of what they were saying from self research, but there was still stuff that I learnt, that was useful to me. Brother In Law, has NEVER done any self research about his condition, so I think that alot of it was very beneficial for him.

    Being around other people that were saying, "Yes, I understand", "I have that too", "I've been treated the same". It made me feel like maybe I am human. It was also good to know that there are others that truly feel as I do. All of you on this site that have helped me through the dark days made me see this too, but to actually come face to face with others like me was amazing.

    I even got to have a bit of a laugh. Ethan got a bit restless & started to cry during the meeting, so I took him out into the hallway to calm him down. I know how sensitive my hearing is, so I didn't want to upset everyone else that had made the effort to come to the meeting with a crying baby.
    As Mark & I had never been to one of these meetings before, noone knew us.
    As I got to the door one of the ladies asked Mark which one of us had CFS, (the meetings are for sufferers & carers) & he replied "We both have it."
    The woman then said "Oh that must be so hard for the two of you, having a little baby"
    Mark quickly replied that he was my Brother In Law LOL!!!!!We are poll opposites & the thought of anyone thinking that we were a 'couple' was funny to both of us LOL

    Anyways one of the wonderful women spoke to me after the meeting & I could have cried. She was just so understanding of where I am at the moment & so caring.
    She is sending me information about the Carer's Pension, as she could not believe that with 4 children, that my husband is not on it. Considering he is the one that does ALL the major stuff around the house. I have honestly never looked into the pension, because I refuse to admit to myself that we need it. I see that if we need for Jason to be on a carers pension, then I feel that I am not doing my job of being a Mother properly :(

    These meetings are held quarterly (I *wish* they were more often,) & I am deffinately going to go to the next one in November.

    So even though I feel so utterly rotten with the cfs/fms at the moment, I am feeling really good for going to this meeting.

    ~*Gentle Hugs*~ to everyone.


  2. tjlibby

    tjlibby New Member

    I am so glad you went. I do believe in them. I go to a monthly group and I have met alot of people that are wonderful. It helps when people know what you are going through. My husband has gone with me along with my daughter.
    I hope the group helps you.. Good Luck...Teri
  3. Mikie

    Mikie Moderator

    I am so glad you felt this was worthwhile after all your grit to get organized and go, something I know isn't easy for many of us.

    I've attended meetings with mixed results. I heard my new specialist speak at a meeting, so I gained a good doc from going. One meeting of a support group at which there was no speaker and lack of good moderating broke down into one woman's obsession over her husband's leaving her. I felt sorry for her and she needed some support, but she monopolized the entire meeting. Everyone there was sick and there is only so much of this kind of venting that people can handle. After telling someone you are sorry, there isn't much else you can do for them. She needed to seek a different type of support group or get some therapy. I left swearing never to go back and haven't.

    I'm very happy you gained so much and that your getting out was such a positive experience for you.

    Love, Mikie
  4. lease79

    lease79 New Member

    *Mikie* - I think the reason it worked for me was because pretty much the whole 2 hour meeting was taken up by the speakers. You were able to ask questions & they would answer. But noone got into their life history if you know what I mean ;)
    I can see how your meeting would have been difficult. If we had all gotten into our histories & problems associated with cfs/fms we'd have needed a MONTH to hear everyones woes ;)
    The only real chance to socialise, was during the tea/coffee break & everyone kinda segregated off into little groups that obviously already knew each other. So Mark & I stuck together.
    The main help I really got was from the women that were doing the speaking. I would really love to go to one of the support groups that they work with in Adelaide.
    They were very knowledgeable & helpful to me. They also spent a little bit of one on one time with everyone, which was great.
    I think that they always have a topic that they work through at the meetings & I am really looking forward to going again in November.

  5. pam_d

    pam_d New Member

    ....another great thing you'll find as you continue to attend these meetings is that you will get some wonderful referrals for area doctors, chiropractors, massage therapists----all the health professionals these other women & men with FM/CFS use that they really recommend, and also probably find out who they DON'T recommend. I found my allergist through my local support group, and this guy (by figuring out I had food allergies & treating them) has turned my life around! And I would never have heard about the remarkable work he had done with FM/CFS patients had it not been for the support group.

    I'm glad you both (you & your bro-in-law) got to get to this meeting! And that your hubby is supportive & drives/tends the other kids. Glad to hear it went well!

  6. lease79

    lease79 New Member

    so right Pam. Already I have been told great stuff about a rheumy that I was supposed to see.
    My dr wrote the wrong date on my appointment card & when I got to the appointment I had missed the rheumy by 6 days & she had since gone on Maternity Leave :(
    I am going to try hard to get another appointment with her, as now I have heard from other people that have seen her ;)

  7. artisticweb42

    artisticweb42 New Member

    than I did. I went several times to a FMS support group and it was soooooo depressing I never went back.

    I know there should be an outlet to vent, but I also feel the majority of the meeting should be uplifting. If all it is is people telling all their aches and pains and the mirid of problems people associate with FMS then you look around and go....wow will that be me in a few months or years. It's depressing.

    I'm not sure what the answer is. I just know there is a fine line between being supportive and being depressing. I would love to start a support group in my area that is not considered depressing. You know...leave your troubles and pain at the door....no negativity allowed in the room....just positive healing energy.

    Does this make sense to anyone?