New to this board

Discussion in 'Fibromyalgia Main Forum' started by pookiebyrd, Nov 4, 2002.

  1. pookiebyrd

    pookiebyrd New Member

    First time posting, have been reading and read alot of good info from understanding people.... My question is how do you help your parents to understand that there is no quick fix and you will be all better and back to work in a few days. Was diagnosed 5 years ago, was off work for a year at that time and went back for a few years and have now been off for 16 months, and don't think I will be returning... have FMS/MPS, POTS, pernicious anemia, depression... Am having a real tough time accepting that my life will never be the same again, thank god for my supportive husband and 4 beautiful daughters, but it only adds to the guilt and feelings of worthlessness to have parents that day after day ask "feeling any better?" "think you may return to work soon, I hate to see you lose that great job, with that great pay." How can I make them understand that no one hates it more than I do and it really hurts for them to make it sound like I want to stay home and do nothing.... sorry for rambling so much...I just don't know what to do anymore to make my family understand that this is not a choice it is a prison sentence..........we can not just take a magic pill or have a magic procedure and it will all go away..... Thank you for listening, I feel so alone sometimes......
  2. pookiebyrd

    pookiebyrd New Member

    First time posting, have been reading and read alot of good info from understanding people.... My question is how do you help your parents to understand that there is no quick fix and you will be all better and back to work in a few days. Was diagnosed 5 years ago, was off work for a year at that time and went back for a few years and have now been off for 16 months, and don't think I will be returning... have FMS/MPS, POTS, pernicious anemia, depression... Am having a real tough time accepting that my life will never be the same again, thank god for my supportive husband and 4 beautiful daughters, but it only adds to the guilt and feelings of worthlessness to have parents that day after day ask "feeling any better?" "think you may return to work soon, I hate to see you lose that great job, with that great pay." How can I make them understand that no one hates it more than I do and it really hurts for them to make it sound like I want to stay home and do nothing.... sorry for rambling so much...I just don't know what to do anymore to make my family understand that this is not a choice it is a prison sentence..........we can not just take a magic pill or have a magic procedure and it will all go away..... Thank you for listening, I feel so alone sometimes......
  3. joyof3

    joyof3 New Member

    pookiebyrd, sorry your parents don't understand i think we have all been there in some way, and know we do understand. the only advice i have is try to inform them the best you can. agian a big Welcome.




    stephanie
  4. karen2002

    karen2002 New Member

    I think that you should print this page out for your parents. They are probably completely in the dark on how you feel. You may have tried to tell them in bits and pieces, but not as concise and clear, as you did in this post.
    You know most people are used to dealing with diseases and illnesses that have a distinct beginning and end. With today's advances in medicine, that is usually the case. It is not so, with FMS and CFS, though.
    You must remember, too, that like we sufferers, parents are not immune to feelings of denial. You said you were having a tough time accepting that your life would never be the same again. Imagine if it were your child that were ill--you too, would look for symptoms daily that there was improvement. Your parents, too, want their loved one to recouperate, and have their wonderful, happy life back again.
    Also, sometimes others are just at a simple loss, on what to say to you. We are also very sensative, and misconstrue their meaning. "Are you feeling better, today?" simply can translate into, "I care about how you are feeling". We take it to mean, "Are you ever gonna get better? Why have you chosen this, why don't you work harder to get better?" I do it all the time, I assign my own meaning to the contents of their illness related statements, depending on my emotional state.
    As a patient, I know how this affects you. One must step out of our shoes, and into theirs for a moment, however, to understand that they probably are having difficulties coming to terms with this as well. There must be a great feeling of helplessness, to a parent. They will always be inclined to want to fix what is wrong with their children. Perhaps they are just not ready to accept this as of yet. They are going through a grieving process, too.
    I think it would really benefit you and your parents, if you did print this, and hand them a copy. Then perhaps, they would understand more fully.
    Best wishes,
    Karen
  5. Shirl

    Shirl New Member

    To the board Pokie, glad you have found us.

    This is unfortunate that it is your parents that are causing you this stress. But it is wonderful that you have an understanding husband and daughters!

    Its those you live with that count the most, I would not venture to tell you how to handle your parents, other than to tell them that you are ill, and that this is your life and you need to live accordingly.

    Again, welcome to the group, you will find a lot of support here and some really great people to speak with.


    Shalom, Shirl
  6. Sandyz

    Sandyz New Member

    I just want to say hi and nice to meet you. I know how
    frustrating it can be. When I talk fm with my mother and
    sister, they change the subject. They don`t even want to talk about it. Luckly my husband believes me and I found this site or I`d go totally crazy.

    Hope you find lots of support and some answers here!
  7. Dezsngs

    Dezsngs New Member

    So glad you have a supportive husband and girls,Not the case here I battle alone. Live in a very sm town and take care of a couple of older people. my mom is 88 and doesn't realize all the pain and stress that is here. My husband ignores me hopping it will all go away and I keep it inside. cry a lot and pray that I can make it another day. So sorry your parents are not supportive but maybe as someone said you can print out and give them what we go through . Doesn't work for me but I am to the place now that if I have to take a muscle relaxer or some heavey headache meds I do it and go to my room shut the door and he doesn't bother me.It took me a long time to give myself that permission.....Hang in there((((((HUGS)))))Dezsngs
  8. Kathryn

    Kathryn New Member

    The very first message on this board is one telling you how to order info pamphlets on FMS. They will send you a bunch free. Get some for everyone you know. Also, I don't remember whether I saw it on this site or one of the other FMS sites, but there is something called "A Letter to Normals" that you can print and pass out. It gives people an idea of what you are going through. In the meantime, you are not alone - all of us crazy people are here, and we DO understand.
    Kathryn
  9. melksng

    melksng New Member

    Hi pookiebyrd,
    Welcome to this board, i know you will find it very helpful as i am new here too and will be here for a long time yet.......Melissa
  10. donza

    donza New Member

    This site is a god send...lot's of people to relate to. One of the hardest things about CFS is that you often feel utterly alone in this horrible thing. My family, especially my "old world" father, doesn't understand the ups and downs...or even that this is a real disease. These things have helped me get through a lot of the emotional and physical pain:

    1) Try to relate to other people who are suffering like you
    2) Find a good doctor that takes your diagnosis very seriously
    3) Stay informed
    4) Try to enjoy the little things in life, i.e. a pet's affection, a beautiful sunset, a crisp wind through your hair...anything that still makes you smile.
    5) Ride the ups and downs bravely...remember that no matter how bad it gets...there will be some ups again.