Pissed off

Discussion in 'Fibromyalgia Main Forum' started by winterqueen1, May 18, 2003.

  1. winterqueen1

    winterqueen1 New Member

    I don't know about the rest of my fellow Fibros, but do you get the feeling we're dismissed as having an illness. Right now my friends and family think I'm just a nut case. They don't get it, I may look OK, but it doesn't mean I feel that way. This last week has been awful. Seems they all ganged up on me and would like for me to go into some sort of detox center. I do take alot of medication, but I go by the book, only what the doctor allows. I never abuse!!!!! Now, if I had cancer would they want me to stop treatment? What about a heart condition, would they still want me to be in detox and get off my meds? I'm being pushed constantly to go and do things. If I mention I'm just too tired, you'd think I'd just said, let's go, I feel great!!!! Do any of you have this same problem with family and if so, how do you handle the situation? How do you make them realize that this is an Illness? Would love to hear from some of the group, I'm about to go crazy, winterqueen1
  2. jka

    jka New Member

    people can really drive you crazy!when i was first dianosed for lupus-people looked at me like there was nothing wrong with me.it would make me angery.but then i realized that anger just made me feel worst.i didn't need their negative feelings or thoughts.i figured it was their problem not mine.i was lucky enough to have a family that supports me in my illness.it was a real shocker when i was diagnosed with fibro.what the heck-just another thing on my plate!with my husband i "accidently"left an artical about fibro where i knew he would find it.after reading it he told me he never realize what i had been going through.there are also books on chronic illness out there that have chapters for family and friends.

    i hope things get better.
    kathy c
  3. alsu

    alsu New Member

    Hi there winterqueen1.I do feel for you.I only have this problem with a limmited number of people,I'm very lucky as my family Are very understanding,caring helpfull.I could not go on without them.Go to a site called fibro hugs.It has a letter there called "a letter to normals".It puts over very well the way we all feel&suffer.It's writeton by a fellow sufferer taking into acount what other sufferers have said over the years.
    I printted some copies out & gave them to family members.It helped a lot. There is also a letter there for us to read from the normal people explaining our dificulties in in understanding them.It's weel worth a read.
    Hope this helps you.Hugs Alan U.K.
  4. goingslowlycrazy

    goingslowlycrazy New Member

    ...I think the idea about leaving an article or two lying around is a great one.
    Of course, they could be in denial over your illness, which is quite common. I guess they think if they pretend it ain't there - it will disappear. If only it was that easy!
    You are certainly not alone in this...I have seen people asking for help with the same problem many times.
    I think you just have to be true to yourself here and if you are too tired to do something, just tell them, in a nice way, that as much as you would really love to do whatever it is, you really can't manage it just at the moment. Eventually they will get the picture.
    Sorry I can't be more help on this one, it is a difficult one. It's either more education or to come out of denial that is needed, I feel.
    Nice to have you with us,
    Mary x
  5. winterqueen1

    winterqueen1 New Member

    Thanks for the feedback on my problem. My husband knows about FMS, but he has a cousin that is what you'd call a spirital healer. She sends any information and he takes whatever it is and runs with it. I love this cousin dearly, but I just don't see that light. You know, the one that solves all your problems. I get tapes, books, numbers to call, and even 18 thousand dollar trip to spirital place in Mexico. I want to be well more than anyone else, but they don't see that effort. I don't deny what my cousins feels, but I've always been a traditional type person. This thing is out of control and making my life miserable and the FMS worse, the stress is eating me alive. Thanks for listening Alan and the other two wonderful folks that were kind enough to help. LOL, Reta Winterqueen1
  6. MemoryLane

    MemoryLane Member

    I don't have FMS, I have CFIDS, with the usual complications. When I was finally sucked into the black hole of this illness, I was in incredible pain. No one seemed to notice or understand the limitations - I was forced back to work, even though I barely had the use of my right arm and hand.

    Anyway, to make a long story short, I started pulling away from everyone and stayed at home more and more. Couldn't drive anymore; resigned from my job at the urging of my doctor. It had come to this and I felt that I needed the solitude - it was the only way I could handle things in my life. I was eating less and sleeping more. Medications had to be added and some increased, same with my supplements.

    Well, this my family noticed and finally started paying attention. Yes, I finally looked sick enough, though this was not my intention, but they suddenly began to worry because I was now "wasting away". They still don't understand my illness fully, but now it's a mystery that they can't help but wonder about.

    The timing was now right to "unload" all the information about what I was going through. I hope you aren't faced with this situation, but sometimes it takes a shock to get people's attention.

    Wishing us all well,
  7. winterqueen1

    winterqueen1 New Member

    Lane, our stories are ditto. I have isolated myself as much as possible. Somehow not having to face the world is easier. I get panicky just going out to get the mail. I make lists for my husband just so I won't have to go out. I want to thank you for the nice repy and not feeling like a complete nut case. I just don't know why we're treated unfair and we live with this constant guilt of being sick. Who in the world would want to live this way? Thanks again dear Lane, take care and having the time to share with me. Reta winterqueen1
  8. youtoo

    youtoo New Member

    Dear Pissed Off.....I know exactly what you are talking about, the pressure these people {our family's} put on us. It only to make everything worse, they pour on the ingredients for stress, quilt, and depression. My family has caused me to become a beautiful recluse, the friends , well, I had to make that choice. I just could not answer the questions anymore 'because; YOU LOOK FINE', but we all know that one! I don't think my family will ever be the least bit understanding , thank goodness it is me and not them.
    I went 20 years before I finally found a doctor that semi-cares. I wish I could help you, it's nice to know that we are not alone here.
  9. kerrymygirl

    kerrymygirl New Member

    I was going to call you wintergreen. Anywho, this is my biggest peave of all with this. O.K. I can understand other normals not getting it. When it comes to our friends and family,most of all. They have NO idea how it hurts, how much extra stress and damage they do. I realize this is so hard for a healthy person to grasp. WHY not atleast try if you say you love us. Why make it worse when you tell them. I have passed out letters written to normals. Given to doc`s and family. Very little response. I came from a close and loving family. When it came to Mom`s cancer everyone pulled together,same with dad,grandparents,etc. I was always there when I was well or sick as much as I could for others. Even my kids,x, never left their side during their times of illness. When it was my turn, no support. This is sooo important for anyone who is ill. I know chronic illness is hard for others, but it is hard for us to do it without the support of the very one`s we thought would be there no matter what. I do not bother anyone just keep most of it to myself. I have tried not for sympathy but understanding. That is all I want.
    I did go back for thangsgiving, I had lost wt,looked bad,this was the 1st. time I was treated with alittle more care. Since I did not have the strength to help as I usually pushed to do. So all we can do is forgive their ingnorance,sorry but true,. Keep our own spirits up,not always easy I know. If they only knew how it hurts,to bad we could not get all together and go to each family to do a power in no`s. Pat yourself on the back for every thing you accomplish,we may have to wait too long for others too. Just think making it day after day what inner strength you have. I will send a pat and a HUG.....
  10. ahgatto

    ahgatto New Member

    I am 38 years old. I look healthy on the outside. I am a good weight for my height and otherwise look fit. I have found it hard to get even my loving husband to understand. He is mad at me because I am not "willing" to watch our 2 young daughters of the weekends so he can work on a new driveway for our house. I tried talking to my 78 year old Godmother about it and she just said that what happens when you get old, the aches & pains come. She is 78 and still works! I am only 38! My biggest gripe, however, is doctor's not understanding. Last week my Rheumi told me that my requests for hydrotherapy, massage therapy and pilates reformer trainer were unreasonable and without basis. Needlesss to say, I am looking for a new DR. I do, however, gain some comfort from this board knowing that I am not the only one.