Family just doesn't get it

Discussion in 'Fibromyalgia Main Forum' started by annabella39, Jun 5, 2006.

  1. annabella39

    annabella39 New Member

    I was laid off last August and have just recently found a part time job. My family has been all over me because I didn't run out to get a retail job right away. I told them I can't stand on my feet due to my fibro and the cramping in my butt and my back pain. They say I should just suck it up. I need to find another part time job so that I can bring home a 40 hr paycheck and once again I'm having to explain why I can't run up to the mall and get a job. It makes me crazy that after all these years they still don't get it. They understand my pain is real. I know how much my body can take and why can't they respect that. My doctor doesn't want me standing on my feet either. I do well at a desk job where I sit some and move some. Not too much of either. I can't afford botox injections in my butt right now and standing on my feet is NOT an option. Anyone else have a problem w/ family understanding the fact that you have a DISABILITY and limitation? I am exhausted just working a part time job but I'm enjoying it and am so happy to be back in my chosen career. Sorry for the jumbleness of my post - I'm just sick to death of defending myself. Thanks for listening.

    Anne
    [This Message was Edited on 06/05/2006]
  2. dleaning

    dleaning New Member

    Hi Anne,

    Yes, I have the same problem here, my sister is currently on my butt about always being late for everything. I find it hard to get the energy to drive sometimes, and she just doesn't understand. I don't think many people do, unless they have it.

    Dawn
  3. annabella39

    annabella39 New Member

    It's just so frustrating. I know they love me and that they just don't want this dd to suck the life out of me. I just don't know how to get them to back the **** off.
  4. Marta608

    Marta608 Member

    ..... being hounded by your family or being ignored. I deal with the latter. That's no fun either.

    Sometimes I think they somehow feel that our illness is a negative reflection on them. Also, I don't know about you but I've never been very healthy anytime in my life so I think they see me as a malingerer.

    So be it. It's sure made me a lot more emotionally independent, I'll tell you.

    Marta
  5. lin21

    lin21 New Member

    Hey Anne,

    I lost my job of almost 20 years and my mom's response was "so you`ll get another job", in a nasty tone!!! She didn't realize that this was chronic and it may never go away. Now four years after being diagnosed everyone avoids me and maybe it's better that way, I have found that dealing with people just makes me feel worse and i suffer the consequences. I'm going through this thing that several people who know of my illness have taken full advantage of me.
    Good luck honey!!
  6. caroleye

    caroleye New Member

    As soon as I could no longer "serve" them, they became angry. Not one of them has acknowledged my illness of over 20 years. Prior to that it was nothing for me to work three jobs!!

    But it was all about "them"; so after I heard the book about divorcing your family.........first with my heartless mother; now almost with my only daughter (who's a clone of my mother)!!

    And like someone mentioned, just can't "do" people anymore. Way too stressful just to "talk"; much less have relationships!!

    Bless our animal angels!!

    LIGHT**********carole
  7. suzette1954

    suzette1954 New Member

    but until they walk in our shoes, they have no concept. I cant work at all and thank God my husband is supportive most of the time. I am blessed. I have pension disablity and I got to keep my insurance.

    I dont know where you live. Is there a catalog place or a reception job you could get parttime? Here in Nashville, we have Shop at Home(at least for now) and JCPennys catalog where you sit and take orders. Why dont you call some of them. I order from Lane Bryant and Im pretty sure they take orders from home in the evenings.

    Dont know what else to tell you. Some drs. still do dictation. Mine now uses laptops. You might get a job doing that.

    Suzette
  8. claudiaw

    claudiaw New Member

    I just got new DVD offered here about FM. Hoping to send to family if it seem's good.

    Claudia
  9. jenni4736

    jenni4736 New Member

    Anne,

    This is the letter I wrote to my friends and family. I got healthy responses from the ones that mattered. The others never acknowledged it....

    Feel free to use it or change it up to fit your circumstance if you would like.

    Jenni
    **********
    I AM FINE

    "How are you?"
    "I am fine, and how are you?"
    "Great..well have a good day."
    "You too."

    That is how the conversation is "supposed" to go these days. No one really wants the truth. It is just a greeting. You are supposed to say you a fine and just move on....but I am not fine!

    What I want to say inside is... "I hurt all the time and I think it really sucks!"

    I never know what my answer will be. I guess it depends on the person I am talking to and how vulnerable I feel in that one moment. Even thoses with apathy don't want to hear the ENTIRE truth. He!!, even I am not sure I want to admit how bad most days are. If I think about it too much I would probably just cry and shut down. I would be vulnerable to the truth as well.

    That is dangerous because the only way I get through some days is to just ignore my body and keep going.

    The reality is, that is probably how I got to this point and such a young age. I ignored my body for years.

    Now a days, I take a hand full of medications and viatims when I wake up each day. I take a few more just before I go to sleep... they help some, but nothing takes the pain completly away. The time in between is spent trying to just be normal... but I don't FEEL normal. OOOHHH! What I would give to feel normal again.

    I feel tired all the time. It is an exhausting tired. It feels like I just packed and moved the entire house or I have had the flu for weeks and my body is weak and drained...nothing left. Some days if I make it to the shower I am lucky. I am so tired from the simplist of tasks. I slept for 12 hours and I think how crazy it is to be exhausted after a simple shower. It takes hours to get half a$$ ready to go anywhere. I don't want to take that long, but when you have to stop and rest after each task like drying your hair...it takes a long time to just get out of the house. Most days, that is asking too much.

    My entire body aches all the time. My neck and shoulders burn and throb. I feel like I have the flu... that achey dull pain over your whole body...you know, the pain that makes you want to pull the covers back up and stay in bed ALL DAY. That is me...every day.

    My eyes are so dry and gritty I feel like I could make my own beach with the sand in them. The rash on my legs, arms, and chest looks like some cooty you wouldn't want you kids to catch. My wrist and fingers ache and are becoming weak like a little old man with arthritis.

    My feet and legs have permanant charlie horses, always cramped up...not enough bananas in the world for that cramp. It hurts to lay flat most days. If I lay flat I can't breath, it's just too much pressure. So I require about four pillows to wrestle each night to find "comfort".

    I avoid places that are crowded. I can't go into my favorite candle store. I am over whelmed with loud places. I can only stand the mall for a short time, and that is on a good day. The strong odors of things makes me feel faint as though I will pass out. And Lord forbid if I go somewhere that is noisy, crowed, and has food.

    My senses are out of whack...big time. The anxiety of all of this is too much and I feel my stomach has moved to my throat...I can't breath... I think I might pass out.....

    One time I actually went and hid out in a restraunt bathroom stall. I just wanted the time to pass so we could leave but I didn't want my family to miss out, so I stayed in the bathroom for fifteen minutes or so trying to breathe and just let time pass.


    It is all so over whelming.

    Now...I can't go sun bathe either. The only thing that made me look alive was the sun tan...now I have to give that up too. I am "allergic" to the sun they say. On the outside it manifests with THE RASH. On the inside my body is a time bomb of immunities waiting to destroy its next victim....silently. My only line of defense from the Texas sun blast is sun block and a golf umbrella. They are required to watch my kids play ball outside or just to ride their bikes for a while. Many times I can't join in because I have to retreat to the shade of a tree to defend my body against it's enemy.

    Some days...the good ones...I feel "fine" ...maybe even " almost normal". I think I could conquer the world. If I did though, I would spend the next several days in bed from over doing it. Other days I feel like a small helpless child waiting for someone to rescue her from the evil dragon. No one comes though. The best I can do is keep the monster at bay. Then there are the days when even that is too much to ask.

    "This disease is only one part of who I am", they say. "Don't let it control you life", they say with love. It may only be one part of me, but it is impossible to forget. It is there all the time, waiting to pounce. I am trying every day not to let these diseasees rule my life. I want to live and fight a good fight but I am so tired.

    I wake up every day knowing I will fight another battle. There is a war waging forward inside my body. I insist on fighting it. I will not give in. I must fight the battle.

    Maybe tomorrow I will fight...today though...I sleep.