how many are in bed at least 90 of the time?

Discussion in 'Fibromyalgia Main Forum' started by charlenef, Aug 31, 2006.

  1. charlenef

    charlenef New Member

    i feel like i am the only one that is in bed this much.i read people go to the store or work i couldnt even think about this i just wish i could do more i just wanted to know how many are as bad as me? thank you charlene
  2. rigby

    rigby New Member

    I live in bed for me to get anything done is impossible. My mine just will not work. I keep back pain and headaches. Sleep 2 to 3 hours at a time. If I go some where there is always some one with me. My mom has more energy then me and she has to go to the hospital for spinal surgery soon. So she wants me to go with her everywhere before she has surgery. You take care
  3. mezombie

    mezombie Member

    I must spend at least 80% of the time in bed. I do better, if, like HayleyCole, I pace and rest. Lately, it's all I can do to feed my cats and myself. Yesterday was a banner day as I actually managed to get to the local CVS drugstore!
  4. Scapper

    Scapper New Member

    You're definitely not alone!

    I've had times when doing errands and making appts were possible.....but that would be all I would do for the day.

    I'm at a point now where even the small things aren't possible.

    Hang in's definitely not easy. I hope things shift for you soon.

  5. monkeykat

    monkeykat Member

    Hi Charlene,
    I was bedridden most of the day 2 years ago. My health was starting to get worse by the week. Most days I couldn't even get off the bed to crawl around the house until sometime b/t 10:30am - 1pm. I couldn't do much and just brushing my teeth, combing my hair and basic self-cares felt like I was climbing a mountain most days. I wasn't sleeping most of the time, I was in severe pain, severe migraines, allergic to everything (MCS), etc.

    On a good day if I was sitting on a kitchen chair that rolled with wheels, I still couldn't do too much. Everytime my husband drove me to doctors appts. I would get sick for a a couple days after...swollen glands, coughing up yellow, bloody stuff, etc. If I tried to do anything like peel a carrot while I was sitting I'd end up in 10+ pain so I just couldn't do much most days, my brain was so foggy when my husband asked me put the yams on the pan I couldn't remember what I was doing when he left the room.

    I was at my worst like this for about 6 months b/c a friend referred me to a ND who used a wholistic approach to healing and started doing allergy elimination, killing underlying microorganisms using Dr. Overman's herbal formulas, testing and treating for nutritional deficiencies, helping my body detox, and starting to do an accupressure technique for emotional issues.

    She has turned my life around. It's almost 2 years later and I can drive from 30 mins - 1 hour. I probably function like an 85-90 year old as far as functional ability each day but I keep improving. I sleep, I'm not in pain, my GI system is so much better, and most other symptoms are very minimal or nonexistant. I can leave the house and go places now without having severe allergic reactions that would mess me up for days or a week.

    Anyway, I hope this is an encouragement to you b/c I still feel afraid that I will lose what health I've gained. I hope you find answers and the help you need.

    Love, Monkeykat

  6. Lolalee

    Lolalee New Member


    I got up this morning with the intention of posting a thread almost exactly like yours. It's funny how sometimes some of us are on the same wavelength and post similar topic at the same time. Instead, I posted a thread to Hayleycole because it seems like she has been successful with Bruce Campbell's protocol. You are welcome to read the thread. It's entitled "Attn Hayleycole". But, basically she gave me similar advise to what she has given you here. Good advice.

    I've been ill for over 8 years and this is by far my worst year. I am in bed a lot...close to 90% most days. My fatigue is overwhelming. I have to be very careful because after a couple of days in bed I usually start to feel a tiny bit better and then there is the temptation to overdo.

    Charlene, I know it's discouraging, but you are not alone. I think that those of us who are bedbound might not post as often as others, unless they have a laptop. But, that's just my opinion.

    [This Message was Edited on 08/31/2006]
  7. charlenef

    charlenef New Member

    for your replies i do have a laptop other wise i couldnt even do this.i cant sit in a chair without suffering. i think when i go to th dr they think im nut. i request to be seen first and while im there i sit, stand ,sit, stand people are always looking at me but i dont know what to do with myself. i am the best in the morning after a shower i can be out of bed for like 45 min after that only 10 to 20min when in feeling good before having to lay down again. thank you again for your replies charlene
  8. kholmes

    kholmes New Member

    I have severe CFS and am disabled. Last spring and summer, I was in bed about 90% of the time. These days, I'm in a Lazy Boy during the morning and afternoon, until about 2pm, and then I sort of lounge in bed for the rest of the day. So things are better, but I can't walk any distance or stand for any length of time. I can't do any errands on my own, either.

    I have an electric scooter--and a friend built me a wooden ramp--and in the past couple of weeks, I've been taking short rides to the park.

    On this site, WakeMeUp and ShannonSparkles are about as disabled as you, and there are quite a few others who are disabled as well.

    You're not alone!


  9. carebelle

    carebelle New Member

    maybe in my PJ's 90 % of the time
  10. lovethesun

    lovethesun New Member

    In a flare,(which I get frequently)I am in bed 90% of the time.I love my laptop.Linda
  11. mymichelina

    mymichelina New Member

    I am 44 years old......and I feel like I am 80 years old. I get out of bed only if I HAVE to and yes grocery store shopping is exhausting...I can't do it alone...and I hate it. And all I want to do it sleep my life away...I can't stand to look at all the mess around my home.....I would never keep my home like this before, but I just can;t so it! And I have 3 kids age 21, 19, and 17 at home.....can't get them to help much.
    I now spend my days on the computer and watching the TV.
    I want to live and this does not feel like living. This has been 3 years now.......and each day I hope the medicine will work better...and that there wil be a cure.
    soft hugs...
  12. Shannonsparkles

    Shannonsparkles New Member

    You may hear this often, but you are glowingly beautiful.

    It's real. You're not crazy. It's a disease. You're a survivor.

    What can I say about the last six years? A lot of Star Trek re-runs. Muscle knots in strange places. Learning a better way to place my pillows.

    Forming new friendships. Becomming interested in the things that are available to me. Loving life for what it is. Being broken, and comming together again. Worrying. Living.

    There are a lot of men and women in America and in other countries as sick as you and I. Many are even sicker. There are some here who are mostly bedridden.

    The majority of the people who are bedridden are not able to be here with us on this website.

    Carry on.
    ((love)) Shannon
  13. charlenef

    charlenef New Member

    for your compliment. i just wanted to know if i was alone. i feel so useless sometimes i try not to go there other wise i end up crying. thank you to everone for your replies god bless charlene
    [This Message was Edited on 09/01/2006]
  14. Daisys

    Daisys Member

    When I first got this illness, in 1978, I was about 90% incapacitated for about a year. Slowly I got better until I thought I was recovered from about 1983 on.

    Then in 1986 I had a physical trauma that brought it all back again and again I was 90% incapacitated for several years, but slowly recovered to a point--but haven't felt well since then.

    One thing I learned (the hard way!) is that if your body's crying out for rest and sleep, you need to listen. I kept thinking no one could need this much rest, and I'd push it whenever I could. I believe that slowed my healing.

    Now I understand the term 'aggressive resting.' It seems unbelievable that someone could need that amount of rest and sleep, but if you do, you do.

    Also, I believe in not using all the energy that's available. I try to allow half to go back into healing. (That's a challenge to figure out tho).

    I'm feeling better and better, and I hope that happens for you all. My heart goes out to you.