just give me one good day

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Dec 23, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    I feel like I live in a very narrow world. I'm housebound, and with the exception of my bi-monthly shower and a bit of computer time, I'm on this big blue couch all day. I can't even turn to look out the window when I want to.

    Oh sure, I've got a TV. Real fun to have a TV when I don't have the attention span and sound tollerance to use it. And I have a telephone, so I can reach out. But I'm too sick to think and talk. If someone asks me what I'm doing, I have to say, "I don't remember," because my memory's that bad.

    But hey, at least I have books. 60 library books out at a time, at the teenager and juvenile level for the short sentences and simple ideas. I return two thirds of them because they are too hard for me to read. Some days I can't even try to pick up a book.

    So, that leaves me with lots of free time. Free time for what? Well, I've given about every fake brown stone in the fireplace its own identity. Yes, there's my old friend, the stone that resembles a bow. There's the one that looks like a guy with a mustache. There's the chipmunk with the big eye. That one's the turtle head. And there's this lovely patch on the cottage cheese ceiling that looks like a laughing seal. I swear, I can see when the backyard tree is growing, I've stared at it so much.

    Add to this, the stress. The stress of having to get up and get something to eat when I can't think and can hardly stand. The stress of feeling sick all the time WHILE I'm busy being disabled. The stress of weighing whether I can walk to the bathroom right now or whether I should put it off till later. The noise of my family comming and going. My brother's knees click while he walks, and the sound is torture. Sleeping strange hours or hardly sleeping at all. Never knowing what twists and turns I'm going to wake up to.

    Relatives, friends, doctors, shunning or shaming. The barrage of useless and insulting advice...

    ((closet venter)) Shannon

    !!!!!!!!AAAAAAAAARRRRRRRRRRGGGGGGGGGHHHHHHHHHH!!!!!!!


  2. musikmaker

    musikmaker New Member

    Hey you! If I could share a good day with you I would be happy to do so.

    I wish I had some great insight to share with you but for those of us with this illness, there just isn't a lot (of great insight).

    Just remember many times when you visit the board you are upbeat and cheer many of us up. Today you feel differently and we welcome your vent just like we welcome you when you are feeling better.

    So, don't feel you are in the closet. Vent away and maybe tomorrow will be a better day...:)
    Take care Shannon
  3. Shannonsparkles

    Shannonsparkles New Member

    I liked reading about your nickname. :)

    Yeah, I'm pretty bummed out and sick. Here's why, near as I can remember:

    - new doc's turning sour on me. That, and all the treatments we did did either nothing or made me soooo much sicker. Others helped for a short time, which was just getting jerked around for me. I liked her personality, but now I think she's getting fed up with me. She said something hurtful that's making me clue in that she's not hearing my situation.

    - I'm out of good library books to read until next Wednesday. The only thing that makes this all bearable is a little distraction.

    - My brothers are at home for the weekend. This is so stressful. I just want to scream at them.

    - Canada stopped getting my usual sleeping pills, the only ones out of everything I've tried that really help. My naturopath gave me a homeopathic remedy that keeps waking me up through the night - which she says means it's working well. HUH????? Sleeping is a total drag.

    - I've been so sick since doing the lyme treatment in the summer. Eight days taking salt with vitamin C. ND said, "this usually gets people off the couch." Huh. I never remember being sick like that since 2002 when I became totally bedridden.

    - We should be moving to another city in a few months. It's to do with Dad's business, so I don't get a say where it will be. There are three different options and we won't know for weeks which one will be settled on, so I can't even start getting used to the idea and accepting it.

    - crisis lines suck. There is something so unsatisfying in having a stranger say they're sorry for me!

    - Dad works so much I hardly get to see him.

    - I don't know whether my brothers who live with us now will move with us or not.

    - A very old lady guilted me about not being more active.

    - And I am just so, so, so sick. It doesn't let up. I can hardly write here any more. I haven't been able to make a lot of phone calls in a long time. Serriously, I've taken to reading about Job to cheer myself up!
  4. charlenef

    charlenef New Member

    ALTHOUGH I DONT HAVE CFS I CAN RELATE TOTALY I HAVE CMP AND FIBRO I AM HOUSEBOUND MYSELF I LOST THE ABILITY TO EVEN GO TO THE LOCAL DRUG STORE MY BIG TRIP 2X A MONTH NOW I CANT EVEN DRIVE SINCE AUG NOT ONLY THAT I AM STUCK IN MY BEDROOM LOCKED AWAY FROM THE REST OF MY FAMILY I CAN ONLY SIT IN A CHAIR FOR ABOUT 10 MIN AND STAND FOR ABOUT 15 AND I NEED ABOUT 2 HOURS IN BETWEEN THOSE. I AM SORRY THAT YOUR FEELING SO DOWN I USUALLY DO AROUND THIS TIME OF YEAR BECAUSE MY FAMILY GOES TO MY INLAWS AND I STAY HOME ALONE I HOPE YOU FEEL BETTER SOON I KNOW YOU ARE YOUNG AND THING DONT SEEM THAT GREAT RIGHT NOW BUT YA NEVER KNOW WHAT THE FUTURE CAN BRING HANG IN THERE CHARLENE
  5. mrdad

    mrdad New Member

    It's just me (Mrdad) the Joe guy! I am sorry you are hav-
    ing a particularly depressing time! It is totally under-
    standable but especially troublesome for me to hear as
    you are most upbeat in your correspondance on the Board.
    I've noted to some of my Email friends associated with
    the Board and Porch how sweet and wonderfully brave soul
    you present to the rest of us!

    I've wondered if you had been tested for Lyme as it must
    also be very prevalent on the Canadian Praire as well!
    My 29 y.o. Daughter has had it for many years although
    seems to manage it well due to "early" intervention years
    ago! I have a special concern for you young who should
    be well enough to be enjoying all the possibilities avail-
    able to people of your age! It isn't "fair" and God will-
    ing a key will be found soon thru research to free all
    from this often confining illness. Hang in there "Kiddo"!

    Want you to know that I'm thinking about you and am here
    anytime ya need to speak with sonmeone or to "vent' your
    fustrations. Fredericka and Carla-NL have my name and
    Email address and I can get it to you thru them if you
    would like. Please know that you do have caring friends
    that empathize, share and wish to support you.

    Keep an eye out for Santa. Hope he brings ya lots of good
    JUNK!
    Lots and lots of Xmas Huggles,
    MRDAD aka JOE


    [This Message was Edited on 12/23/2006]
  6. Shannonsparkles

    Shannonsparkles New Member

    Among other things. I'm a complicated case of something, the way the doctors get frustrated with trying to treat me.

    I was pretty woozy and having trouble walking today. I had to grab Dad's shoulder to steady myself. He gave me a hug, and I said, "How come you're healthy and I'm sick? You're old!" I stared him in the eye till we both cracked up. That lightened the mood. :)

    Thanks for responding, guys.
  7. suz9601

    suz9601 Member

    I dont know if I have ever written to you before but I too am really sick. I am 29 and have been sick for 10 years. I know what you mean about Job. I do that as well. It seems to help a little bit to read about him. I have lyme and many many other issues and most meds/supplements make me more sick. I have been to too many docs to count and none have helped me. I am very complicated as well. It is so frustrating to not have any help and not know what to do next or what will happen to your body next.

    Anyway, I don't have any help to offer, but do know that you aren't alone in this. It is all so overwhelming. I hope things get better soon.

    Praying for you,

    Suz
  8. Shannonsparkles

    Shannonsparkles New Member

    Thanks for the prayers, Suz.

    I've been to so many doctors too. Really wears on a person to get dumped by the best, you know? I was with the FFC for only three weeks when they told me to stop taking all the pills they had given me, because I got so sick from it. I even had a CFS specialist with a two year waiting list tell me 'come back when you're less sick.' I was so stunned by that I felt like there was nothing left to break in me.

    The more I try to get better, the sicker I get. It's hard to be calm about my health. I mean, who wouldn't panic if they felt like this? But the doctor things are grueling. And I hate having to tell a doctor that whatever he/she suggested isn't working or is making me feel worse. I worry about THEIR feelings! I'm so worn out with this that I didn't even want to tell the ND how poorly the sleep stuff she gave me is working. I'd rather just be quiet than keep fighting for better care. I don't have the energy for this.

    I'm glad my Dad is holding up okay. I just feel so completely beaten that I don't have any fight left in me. And I'm so sick these days, worse than I was before the last doc, I think. I have to ask Dad to think for me.

    I feel for you, Suz. We both got sick young, and we've both been through everything trying to get help. Do you think they'll find anything to help you or I eventually? I don't think much about the future. I can't remember much of the past. I'm so woozy during the day that I feel like I'm floating and it looks like the walls are moving and I have to blink to make them stay still... it's so weird living this way.

    Write more if you can, okay? If you put my name in the title box, I'll find it sooner or later.

    ((hugs)) Shannon
  9. Gothbubbles

    Gothbubbles New Member

    Hey Shannon,

    I haven't been as bedridden for as long, but I'm having a period of time now where lots of nasty things are happening to my body and I'm back to square one.


    Some suggetions for boredom: COMIC BOOKS! They have pictures, so they're easier to follow along. Most people know someone who has them, you might be able to borrow (like I do).

    It also keeps me less bored doing easy sudoku or fill-in word puzzles. No-brainer brain activity.

    Too sick to hold a pencil? I keep myself occupied by watching televisions series in order. I am currently on Stargate, but I also love golden girls, battlestar galactica, buffy the vampire slayer and others.

    I get couchridden and sometimes can't even stay awake. Right now i'm in virginia visiting my boyfriend who is waiting on me hand and foot. I found him on the internet.

    Not saying "you need a man" lol. But I know I don't have it as bad as you, though when I'm at home, it's not good.

    Maybe your family would be willing to consider getting a pet for you? Something easy to care for? My cat cheers me up.

    I also like videogames but lately they tire me out. So much for the Nintendo Wii I got. It's the worst! You have to move the controllers to do anything (it's too bad, because if I were well, this thing would be the best thing ever).

    I find that if I just get through the boredom I can go through one more day.

    My thoughts are with you shannon, we have so much in common, I feel like we share our pain.
  10. Shannonsparkles

    Shannonsparkles New Member

    Hi bubbles. :) How did your trip to Virginia go? Congrats on the boyfriend. Thanks for writing here. I remember one of your early posts with the anecdote about the old ladies on the bus. You handled it so well! And you wrote it so well too. :)

    Are you still bedridden? How are the spasms? Calgary's doing one of its 30-degree-overnight temperature changes. It was howling windy through the night. I get insomnia when it's windy, don't know why. I also can type more those days.

    Good news. My brothers are staying in Calgary. I still don't know where we'll be moving yet. The choices are Tampa, El Paso or Palm Springs. I like Palm Springs best from what I read. It looks like the city we lived in before comming here. Probably good for doctors too. Florida is too wet and stormy for me. El Paso's my next favorite. It has mountains and the best weather. I should be finding out in the next few days. (Come on, California!!!! Or El Paso!!!!)

    What comic books do you like? I might be able to get them at the library. I have something like comic books: grocery store flyers. I have this game I play where I choose which item on the page I'd most like to sample.

    I like Stargate and science fiction/fantasy too. Star Trek re-runs tend to sit well, as they are low-key and I've seen them a zillion times before. Star Gate is too dramatic for me these days - can you believe it? I also do well with Simpsons re-runs.

    I would LOVE to have a pet. I call my brother Dave my Dave-a-pet. A cat would be great, though. Dad's opposed to getting one because they carry salmonella, etc. Too bad. I relax more when I have something to love and cuddle and keep me company. I couldn't take care of a cat. If it made a noise, broke something, got ill or went to the bathroom in the wrong place... I'm not well enough to do what needs to be done. And there's no changing Dad's mind. I've badgered him for years about this.

    I hear you about the boredom. The days I'm happiest are when I can have a nice long phone call or two, or get into a really fun novel. It's slow doing nothing. I remember one morning I amused myself by crumpling and uncrumpling a scrap of paper. I practice writing with my wrong hand sometimes too.

    Ever read books by Scott Westerfeld? I read some of his teen sci fi stuff, the Uglies trilogy and the Midnighters trilogy. I think you'd like the Midnighters. It's creepy, quirky, and a fast read.

    ((welcome home)) Shannon