Is there a way to get people to understand that we are really sic

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Sep 6, 2006.

  1. rosemarie

    rosemarie Member

    I have been struggling with finding a way to get my family and friends as well as some doctors to accept and understand that I am sick, I have something wrong with me.

    It is fibro , chronic pain, as well as degentive disc disease, spinal stenosis, facet syndrome, radulopathy of my lumbar spine, Chronic Meyofacial pain syndrome, and others that I have trouble remembering.

    While I am the one who is struggling with the pain of this DD , I also have a family who want to have their "REAL MOTHER BACK" Not that one that falls alseep on the couch watching TV or when your talking to her in the morning and she is still sleepy , a& my eye's just don't stay open. They want the one that will be the "FUN "Grandma. I want them to understand that I still am fun when I have gotten the rest and help that I need.

    I know that I have changed alot in the past few years. And I get so tired that I don't like to shop with my daughters anymore. As they are embarassed to have me ride in the electirc cart and tell me that I can walk as it is not that far. But they don't understand.What is not "THAT FAR FOR THEM IS MILES FOR Me"

    I wish there was a way to get them to stop thinking htat if I would just lose weight and exercise and eat better that I would not longer need my pain meds... And I would feel so much better. Would I NO WAY. Yes it could not hurt to lose some wieght but I can't exercise enough to lose the weight I need to lose.

    How do you tell some one that you love that just standing up and loading my dishwasher makes it hard for me to walk and so painfull that I want to SCREAM!.
    I have a disease it has taken the ability I have had to walk , fun and just plain have fun. Not to mention working.

    I can't stand up for long periods of time. AS it causes the muscles in my thighs to cramp up and my knees to lock up and then they don't work.

    I am not the TIM MAN from the wiszard of oz who just needs some more OIL, if that was the only thing I needed how great that would be for me.

    I live in a world filled in pain, though it does not show it's self in the ways most people think it would.I don't look sick and I don't have a cast on my legs. But I have the pain that I would get from having a bronken leg or major surgery.

    It is like my body has turned on me and now will not obey the commands that my brain is sending to my muscels , tendons, bones and joints. They just don't work any more. I feel pain when I walk and even when I sit.

    MY body is not mine anymore is belongs to fibro and the other chronic pain that I have inside of me. I now live with fatique that is so bad that I am unable to watch TV with out falling alseep, my muscels don't work in the way they should do. they constanntly cause me pain.

    NOw I have the problem of getting some understanding from family , friends and others and there is NONE. I still am expected to be the mother , the grandmother that can baby sit at the drop of a hat, and have the cleanest house in town as well as the best meals on the table. GUESS WHAT I don't have those things done, my house is tidy and lived in but not spotlessly cleaned my kitchen table is filled with things on it so you can't sit at it and eat. But I don't have the energy to clear it off and find a home for all the junk on it.

    And why is it me that has to pick up not only my things but that of my husband and kids as well.. When the kids come to visit , I get the bedroom cleaned up and vaccumed and the bed made.

    When they leave the room is a mess, there is baby crackers that have been stepped on and are now crumbs that no one has thought to clean up after my 17 month old grandson.

    The bed looks like there was a octopus sleeping in it as all of the sheets , blankets and comforter are all pulled off of the bed and then put in the middle of the bed .

    Why didn't they just make the bed and not leave it a mess for me? If we have pizza it is still on the floor where the baby left his peice of it, there are candy wrappers and diapers and wet towels on the bedroom floor why are they there and not in the bath room? I don't know.

    My youngest understands the most about how I feel and yet she does not pick up after her son and husband although the husband could pick up his own stuff.

    For months we had his dress uniform and one day my youngest daughter calls in a panic that her husband needs this uniform for the weekend inspection and she has torn her house apart looking for it > MOM have you seen it. She asks me. YEs it is in the closet where you left is 4 months ago. So come and get it.

    I am not the person I was , I don't like cleaning my house but I try to keep it picked up so that if some one comes there is a place for them to sit.

    Where did I go wrong with the girls didn't I teach them to clean up after them selves? I must not have as not a one of them do it. As soon as they walk in the house their shoes come off and their keys fall out of pockets and when they are ready to leave no one knows where any one left there stuff and I get this "MOM CAN YOU HELP ME FIND MY SHOES? PURSE, KEYS, BABY, YOU NAME IT THEY CAN'T FIND IT.

    I love them all dearly as I do my hubby but can't they put there things away. My husband leaves his dirty shirts hug up on my vaccum , like the vaccum is going to get them washed , dried and hug up nice.? Who knows?

    Now that I have written a novel and it is all mixed up , I am sorry that it is so long and I still don't know how to discribe just how I feel so that I can get some understanding from my family.

    I guess that is life. But I really need it to change and have some HELP!
    Rosemarie YOu will find me under the mess of boxes left on the floor as my hubby has put in a coumpter down stairs and has installed wireless blxes on this cooumpter and has left all the seven or eight boxes on the floor including all the paper stuffing and the foam stuff it is all here and so am I , so If you don't hear from me you know I have not found my way out of the mess.
  2. psychoforkaatz

    psychoforkaatz New Member

    My biggest problem was accepting it myself, I believed them that I was just lazy or it was in my head. The best thing I did for myself was believing in me. I Know I'm sick and thats the most important. You have to accept your limitations and just let the other stuff go, the stress of trying to fight it will just make you sicker, trust me I know. You are no longer responsible for taking care of everyone else, and you have good reasons for not trying to. If talking to them doesnt get their understanding, try writing a form letter to all concerned, and maybe include some liturature from docs or internet about your illnesses, I know with my CFS the CFIDS assc. has lit to give family memebers to help them understand. Explain that you are sick weather they like it or not. New rules for your house, clean up after yourself, if you had a visable disease like cancer or whatever, they would be taking care of you. You spent your life taking care of them and now you need there help, even if its just expecting less from you, offering their understanding, and picking up after their own darn kids! If they cant do this than let the crumbs and pizza crusts stay til the next time they come or dont let them come til they understand. Tough love maybe, but the last thing you need is people who you need understanding from to make you feel bad and stress you out, thus making you sicker. I still have family that doesnt believe and they are no longer apart of my life. It was just to draining on me to have the negative aspects in my life. Coping with me is hard enough. I have three family members left and no friends. These family members dont completely understand but at least they are trying. It is your turn to take care of you now, dont let them walk all over you.

    Good luck, I hope this helps some.
  3. RENA0909

    RENA0909 New Member

    Your post was sssooooo well written about this illness I wish I could write it down like that !!!
    I think you should print it off and show it to your family to see if it helps them!!!!It should make them realise how you feel at least!

    Tell them they cannot stay if they dont clean up after them is only good manners tell and it makes you bloody well knackered and you cannot do it !!!!!

    If they(and hubby)just gave you that help it would make you feel so much happier to see them!!!!!

    My hubby and I just had 3 seperate visits from his 2 kids,hubbies(and granchildren) and some of my family and I was EXAUSTED!!

    I have said never again...I love them all but it nearly killed me!

    So next time we r going to see them and stay in a hotel...........cos I am getting worse as I get older.

    Good luck....and put your FOOT down !


  4. MsE

    MsE New Member

    I don't think most people want to understand because if they do, they'll have to become more helpful, etc.. In other words, once a friend or relative truly "gets it" he/she is no longer free to ignore it. Knowledge brings with it a need to change our behavior. People don't want to have to do more.

    This sounds harsh, I know, but I think it is just human nature to resist change--including the changes that have to come when one finally admits someone they love needs more help.
  5. michellokitty

    michellokitty New Member

    This illness we all invisible to everyone painful for us. Part of the reason they don't want to see in my case is that I pretend to be okay...I let them all win every day. Pretending is harder than anything. This illness stinks because sometimes you can walk, sometimes you can't without pain. Sometimes you can shop..other times you can't get out of bed! This illness is not consistant and it leaves all of us guessing! I know I hurt! I hurt badly! I pay for every time I suck it up and pretend. My family has had to learn that they have to deal, but responsibilities are still expected. I still work 40 plus hours a week as a secretary, then go home to dishes, laundry,etc.....I am in pain all the while and it makes me crazy. It is constant pain and worry and stress in my world. I keep on day by day..when I nap I worry that I shouldn't be napping....when i leave the dishes, I worry about that too...there is no escape from this pain. At least we all have each other to vent to since noone else cares or can help. My family is good to me..but I still feel very alone.