If I Told You...

Discussion in 'Fibromyalgia Main Forum' started by petemora, Oct 12, 2010.

  1. petemora

    petemora Member

    If I told you I had AIDS, you would understand that I get tired. You would make the attempt once in a while to see me when I was feeling up to it.

    If I told you I had cancer, you would call me up once in a while just to see how I was feeling. You would understand if I couldn't attend family functions.

    If I told you I had arthritis, you would try to understand the pain I feel. You would ask questions and listen to my answers.

    Because I have ME/CFS & FM, you presume to know "miracle" cures that will work for me, even though you have never taken the time to listen to how I am feeling. The only word you have ever heard is "fatigue" and you close your ears to anything else. After you, you get tired too...

    Because I have ME/CFS & FM, you presume that I am lazy and don't want to work and am looking for a way to make the government pay for a nonexistent disability.

    Because I have ME/CFS & FM, when you see me out having a "good day", you presume this is how I feel all the time and, once again, you judge me as a scam artist.

    If you ever took the time to ask and listen, I would like to tell you how all my symptoms work together to leave me pretty much housebound.

    I get headaches, sometimes for a month at a time. I get brain fog, so I can't remember simple things. I don't drive much because it's too hard to concentrate on everything. The last time I drove, I forgot how to put the cruise control on. I forget how to put the windshield wipers on.

    And this is embarrassing - I have a green tongue - even though I use a tongue scraper and mouthwash and brush and floss regularly.

    I almost always have an earache.

    I have major digestion problems. Sometimes I vomit 3-4 times a week. (My doctor has diagnosed Irritable Bowel Syndrome).

    When I can, I try to be physically active. But I usually pay the price. Then I get so tired, it hurts. My body hurts all over. It hurts when I get up in the morning, it hurts all day, and then I take my evening meds early and go to bed at 1:30 p.m. I have trouble standing in one place for any length of time. I get dizzy and have to sit down. I have trouble talking on the phone because I have to concentrate so hard on what you're saying and I don't have any verbal clues.

    Oh, yeah, and I have "fatigue". Pretty much ANYTHING I do uses up energy. So I have learned to pace myself.

    When I'm having a "good day", I might get dressed and take the dog for a walk. I might do the dishes. And I might stop at the Dollar Store for a while. That's about it... And that's a good day...

    On a "normal day", I get up and drink the coffee my husband has made for me. I talk to him, then I read the paper while sitting on my recliner couch. Then I sit some more on my recliner couch and watch t.v. Then I get on the computer for a while. Then I go sit some more on my recliner couch. Then I eat the lunch my husband has lovingly prepared for me. Then I sit some more on my recliner couch and watch some more t.v. Then I go to bed. My goal is to stay up until 4 p.m. but many, many days I go to bed earlier.

    Guess what? Sometimes I get depressed when I think of the life I have lost. I used to work. I used to be normal.

    Not only have I lost that life, I have to live with the knowledge that not only do you not understand my disease, but you judge me as being a liar and a cheat because I have applied for Social Security.

    You think I'm lazy because my husband does all of the work around the house. He works full time. He goes to the store and gets groceries. He does his own laundry and he does all the cooking. He does the dishes, he cleans the bathroom and he vacuums. He takes me to the doctor. After all that, he does all the "man things" such as maintain the house, mow the yard, shovel snow, keep the car going.

    And yet my husband loves me, he understands me, and NEVER once has he complained.

    Maybe you could borrow a "pinch" of understanding from him. Oh, yeah, and a little love too...

    Janice P.

  2. kat0465

    kat0465 New Member

    Janice, that really hits the nail on the head! i wish i could let all my family and friends? read that.
    also you have been blessed to have a wonderful husband,who understands your disease. that is rare.....ooh and my Husband needs a pinch of that Understanding!

  3. petemora

    petemora Member

    Thanks for your very understanding reply!

    I just really needed to vent.

    Yesterday afternoon, hours after my post, I got my "official" letter from Social Security approving me for disability benefits. It's been just over 5 years since I had to quit work. More important that the benefits, much more important, is that now I feel somewhat vindicated. I would rather be poor and thought to be honorable, than to receive benefits that others don't think I'm entitled to.

    It is so true that the worst part of this illness is the judgment of others.

    And that is SO SAD!

    Janice P.
  4. kat0465

    kat0465 New Member

    i know getting disability is a hard road to go down, one i haven't traveled yet.
    although my dr said she would help me.

    i also dread what people will think if they know i get disability, although if they only knew how little i'd be getting they Probably wouldn't judge!

    they seem to forget, you get disability because you have paid into it from WORKING!! it's only fair.
    and, we all would much rather be working! (sigh) if people only knew how this feels. :(

    lol, now im venting.
    Take care

  5. petemora

    petemora Member

    The thing with AIDS is that people respected the fact that it was a real illness. WE don't get that. WE don't get any respect for suffering fom a REAL physical illness with mental undertones such as depression, anxiety, etc.

    I read the book, "And the Band Played On", which was about the start of the AIDS epidemic in America, and it broke my heart the way people were treated, as well as the fact that the disease and its sufferers were "disrespected" for quite a while. Not unlike the way WE are being treated by the CDC.

    I mentioned AIDS in my post primarily because a lot of doctors compare the fatigue that WE get to the fatigue that AIDS patients suffer from in the last few weeks prior to dying.

    To be honest, there are not really too many visits by family and friends to my house. It seems as though it's not "convenient" for them to come in the mornings when I am at my best, such as it it. I rest in the afternoons and go to bed by 4 p.m. Many times, though, I am on my way to bed as early as 1:30 p.m. or so....I find that trying to keep a schedule and pace my activities works the best and makes me feel the best, such as that it. It is very diffiult to change my schedule because of the meds I take, and when I take them. My body is functioning fairly well right now and I don't want to push more onto it that it can handle. If I do that, I will pay for it, probably severely.

    Recently I had to spend 4 days in bed after an extremely busy day. My grandson had minor surgery (tubes put in ears and adenoids removed). I had bathed and dressed the night before so I wouldn' have much prep time to get to the hospital to visit him. It took from 2-3 hours for the surgery to be done and for him to be ready to leave the hospital. After he was on his way home, my sweet elderly neighbor invited me to have a cup of coffee at her house, so I did. Very relaxing and pleasant. Spent maybe an hour.

    Had a good three hours to rest before my twin grandsons came to my house after school, around 3:30 p.m. This I suggested in an effort to help out with after school transportation problems and eliminate one trip my daughter would have to drive after her twins came home from school on the bus. I suggested my daughter's twins could instead come to my house after school, so I could give them a snack and enjoy their company, and then we would all walk over to the high school for a 6th grade football scrimmage. I got home at 7 p.m. that night. Had an absolutely wonderful time, but spent the next 4 DAYS! in bed.

    May God Bless your former classmate, Robert, and your aunti and her friend who were his only visitors. I truly believe that Robert and your aunti and her friend will get a special reward in Heaven for their care of Robert.

    Janice P.