Bedbounders! Where are you? How do you have your room set up?

Discussion in 'Fibromyalgia Main Forum' started by ilovepink4, Oct 12, 2009.

  1. ilovepink4

    ilovepink4 Member

    I feel so isolated and like I am the exception. I am mostly bedbound and homebound for months and months at a time.

    It seems like the majority of people here are working still.

    And, I agree with a comment someone else made on another post. They said that this seem like an information board rather than a support board. Eveerything has gotten so technical here. I don't know all the result of all my tests and all the levels of everything in my body. It is very confusing for me.

    I feel funny talking about my illnesses on the chitchat board because it is for everyone, not just fibro or chronic fatigue...

    are there many people out there like me? who is bedbound?
    [This Message was Edited on 10/22/2009]
  2. Dantes

    Dantes New Member

    You are not alone on being bed/home bound.

    In the first 3-4 years of my illness, I could at least get out once or twice a week. I was still not able to drive then, nor am I able to now [neurological issues].

    However, I have been progressively worse over the past 3-4 years. Things are becoming much worse...

    Unlike you, I have kept pretty good tabs on my medical records and tests, so I cannot relate to that.

    Actually, I am highly surprised that you have not searched, researched and explored all avenues and theories involved with your illness. Most of us that are on the "bad" side of this illness have.

    Then again, I am 28 and live in front of a computer.

    I also do not want support or to learn to cope. I am still relatively young and want bleeding edge science and natural information.

    There is plenty of support here but you might have to use the search function to find it.

    Just remember that knowledge [information, news, etc.] is power. Also, know that google is
    there if you are looking for specific support.

  3. karynwolfe

    karynwolfe New Member

    Hi there =)

    You are not alone!

    I'm with my family right now, away from my home because I cannot take care of myself anymore. Definitely housebound because I can no longer drive, but able to get out if someone can take me. However, even then I'm still 80-90% housebound because I get so ill after the trips, they need to be far apart. Working isn't even in my vision. Every time I as much as -get through the day- it's an achievement!

    If I'm homebound 90% of the time, at least 10% of that is being bedbound. You never know when you'll wake up and just not be able to walk, or even sit up. It used to be worse, but I've improved a little with having people to cook for me. I can save that strength, and I need all I can get. I can usually sit up a few hours a day, now!

    I think this board is kind of technical lately because people come here to discuss treatments and such a lot. But I'm sure the support part is still here when people need it. =)

    It's a different lifestyle to understand, isn't it? I still remeber what it was like to be going to college; I couldn't have imagined things would get to this point. Couldn't have udnerstood it until I lived it. But now I do, undertand, and no, you're not alone! *hugs*

  4. TeaBisqit

    TeaBisqit Member

    I am 98 percent housebound. The two percent is used to get groceries, do laundry or go to the doc. And then I'm down again for another two or three weeks. I only go out about twice a month and I pay in spades for it every time I do.

    My life is the computer now, too. It's the only life I seem to be allowed to have.
  5. tvpro37

    tvpro37 New Member

    I've been unable to work/go to school since almost the beginning of my illness (10 years). I've been completely housebound for the past 5 years or so, and totally bed/chair bound (use electric wheelchair for transport in the house) for the past two or three years.

    So you're definitely not alone!

    Trina ;)
  6. AuntTammie

    AuntTammie New Member

    I live alone and in a good week, a really good week, I have about 28 hrs total during which I am functioning (and that means doing everything I need to do, when and if I can - showering, eating, cleaning, etc)

    ....I do get out of the apt, but it is on a VERY limited basis - to get groceries, go to church, doctor's, etc....again I can't do most of those things often at all, when I do them I pay for them for a long time after, and if they are further away than 20 minutes, I have to get someone else to drive...or if I am having a bad day and have to go somewhere, even if it is close, I will have to have someone else drive

    .....also, some days I have to use a walker - a wheelchair would be better, but I don't have anyone to push it, get it in and out of the car, etc - other days I don't need it, and still other days, I cannot function even if I try to use it

    quite frequently, a week or more will go by without me going any further than my couch, bathroom, and bed

    and unfortunately, sometimes I have a real hard time even being online, bc it makes me get dizzy and nauseous, and gives me headaches and makes my vision go weird and my thinking get foggy....i start to feel real desperate when that happens, bc if I can no longer use the computer, I will really be cut off from everyone

    oh and if you are looking for support, there are some very supportive people on here, but there are also other boards that are more about support.....I like this board and a couple of others the best, though, bc they do have a lot of very helpful info in addition to the support....personally, I want to learn as much as I possibly can about my illness, and this board is a good place to get info to then further research on my own
  7. ilovepink4

    ilovepink4 Member

    Thanks for giving out a holler from your beds! I apreesh....and feel less alone.....

    I start to go crazy this time of year when the short summer break is over....i always feel more energy in the summer and can actually get out and it is so disappointing when that ends each year!

    I have tried so many things.....(rolling my eyes at Dantes) and haven't found anything that can beat this seasonal pattern....I wish i could spend a few months down in Arizona or somewhere dry and hot and see if the summer break kicks in in the winter....

    you can't believe what hearing a shout out from you guys feels like for me! I feel less alone...Thanks guys! If you ever need a yell, I am here. ( as usual) :O)
  8. gb66

    gb66 Well-Known Member

    Hi. I am 99% housebound now. I just go to medical appointments (unless I'm so sick I have to cancel). That is my life. I cook a little a few times a week and mostly just rest, sleep, tv, computer, puzzles, read, the usual things we do.

    I have asked for support on this board many times in the last few months and always have a good response. No matter what problem I post about, someone will reply and share their experiences and offer comfort. I coundn't do without them.

    I was able to attend college part-time and also work for the first few years of CFS/FM. Gradually had to cut to part-time work and then just throw in the towel. That was over a period of the first 10 years. I have been homebound for the last 21 years. It's been a long journey. Maybe it's going to end soon with the discovery of this new virus.

    [This Message was Edited on 10/12/2009]
  9. nah.stacey

    nah.stacey Member

    Don't feel funny talking about your illness or how you feel (good or bad) that's why we come here, it's why we search for others like us.

    I don't know about you all but I used to feel like an anomaly, a freak out of the hospital wing's coo-coo ward. I have all these strange pains that come out of nowhere, virus' that crop up every 4-6 weeks, stay in bed all day.
    No one wants to feel this way and explaining it to someone is frustrating and humiliating for me: how do you explain having the flu everyday?
    I thank you all for posting what you are feeling, not that "misery loves company". I wouldn't wish this DD on my worst enemy, ok maybe my worst. It helps me feel like I'm not crazy after all and that what I do feel is part and parcel of this whole stupid illness.
    Hugs to all and keep posting.
  10. ilovepink4

    ilovepink4 Member

    I think it would be cool to have a message board just for us housebound/bedbounders. I also would like to discuss parenting from the bed. also, Running a household from the bed.....

    Nah, i love your username!

    I would like to hear how everyone has their bedroom set up. What do you keep within arms reach? I have my laptop, a pile of books, magazines, catalogs for online shopping, basket of various necessities (nail clipper, dental floss, lip gloss, basic makeup for surprise guests while trapped in my room looking nasty, room spray, credit cards, calculator, stamps, envelopes) journals, Netflix movies, sewing basics, medications, water glass, snack to push stubborn pills down, scissors, markers, pens, pencils, online banking folder with bills and stuff, folders with the kids school info, homework supplies for helping the kids with homework, ipod, cell phone, remotes for fan, tv, dvd, vcr, tooth whitening trays, bite block, inhaler, pencil sharpener, cross stitch and embroidery stuff, music cds, and a case of sprite under my bed, hidden from the kids because it isn't diet....

    it is like i have an office right here.....i have a tall, narrow bookcase next to my bed instead of a bedside table.....everything is pretty sounds like lots of stuff but it is small stuff and is in baskets....

    i remember someone here had there husband design their bedroom to have a mini kitchen and a table and chairs so family could eat with her in her room....i thought that was a great idea! i don't have the space....but, i did move an upholstered swivel rocker so people would sit in here and visit with me....

    i think it would be nice to have a little fridge in here... i also like to keep a spoon in here for yogurt or that sugar free jello case someone gets me one but forgets the spoon! teehee!

    what is in your room? how do you have things set up so you can live in your bedroom?
  11. ilovepink4

    ilovepink4 Member

  12. hagardreams

    hagardreams New Member

    My whole life is home, home, home.

    I sure do feel isolated from the world. I cant even go out to thrift stores like I use to. I would go, and be so exhausted by the time I got through there, and go home. Now I just dont even go.

    I read about those that work, and envy them to a point. I know they are suffering also, and work makes it worse sometimes, but at least they can get out of the house. I know it might not be by choice, some cant get disability, have no choice, ect.

    Its frustraiting to say the least and I have days that I wonder whats the point. I know we all feel that from time to time.

    I was for a long time spending time on the computer, but even that has gotten so bad that I just cant do it very long at a time. I dont sit in the chair much anymore, its the bed all the time. I was playing a lot of games to keep my memory going, and now I just cant hardly do much of that anymore. I have to stop and take lots of breaks, by laying down.

    I am here if anyone needs to chat, while I dont sit for a long time at the computer, I do get on here as much as I can off and on during the day.

    I know what you mean about not being a support board like it should be. There is some good info being put on here, but we need a good support group. I use to belong to another fibro support group and it closed down, I sure miss it. I just dont get hardly any responses on here like I did there. I miss that.

    Hugs without pain to all my fellow sufferers!


  13. spacee

    spacee Member

    I am not bedbound but I am very isolated and sick enough to not "do" things around the house. I wish we had a messageboard that we could use. The ChitChat board people seem a lot better off. I guess we could start our on thread over there called "the homebounders" or possibly something else.

    I love your organizational skills ilovepink. Wish I had had half of that down when my kids were at home. We did use our kingsize bed as "the familyroom". Played games, read to the little one, helped with homework for the older one (who did his homework, the middle one opted out. He was just immature and caught up later).

    Anyway, back to the thread, we could talk about what we are watching on tv, qvc (does anyone watch that?), music or just how our day is going. I think it would be neat to have a place we could just check into.

    Ok, I am going to start a thread on the chitchat board...see you there, if you read this!!


  14. jole

    jole Member

    I leave home twice a month (don't drive) and we live in the country, so other than this site, I have no contact with anyone other than family when they come over. I use to fix huge when family is here we cook together, then they clean up.

    I don't even go to church anymore, which was a very important part of my life. I can't do crowds...get overstimulated with noise, lights, smells, etc.

    Most of my day is spent going from bed to computer to recliner...I laugh that a good day is a nap....a shower....a nap! When I do go somewhere I too am completely down for days. In the summer we sometimes go to the lake for a weekend....I love lying in a chair outside in the sun, listening to the water lapping at the lakeshore, doing absolutely nothing. But it takes me the entire week of doing nothing in order to make it back to the lake the following weekend.

    The winter is nearly unbearable. That's when the depression is the worst, because I feel so utterly worthless. The pain is so severe that I can't seem to even shower every day. My poor hubby is a living single man in our marriage during the winter. We even have separate rooms because I can't sleep.

    Oh, by the way...I'm on the chit chat board...and love it! It's my escape from reality on the porch! Most days I don't have a lot to add, but then most of them don't know how bad my life is, either. If you all want, I'll start a new group over there for us! Just let me know, okay?
    I agree we need one...............friends....Jole
  15. jasminetee

    jasminetee Member

    Here I am ilovepink. I'm bedbound too.

    I hate it. I hate it. I hate it.

    I did read this thread and I just can't talk too much about what I'm dealing with. I'm starting to cry now. I can't do it right now. I'm sorry.

    My prayers to you all.

    (((((((((((((((((Group Hug))))))))))))))))))

    Thank you Spacee for starting a thread over there. I'd like to read all the Housebound/Bedbounders posts there and I may be able to participate some time. What a nightmare we're trapped in.

    [This Message was Edited on 10/23/2009]
  16. spacee

    spacee Member

    It is a nightmare that I would not have dreamed.

  17. Danielle

    Danielle New Member

    I am sorry that you are all feeling this way. I've been on the board for along time though I don't really post that much. I am able (kind of) to still work but it takes everything out of me. I barely can do anything else as far as having a life goes. I too originally came here looking for support from others.

    It seems that there is laways alot of arguing and bickering going on here back and forth about who knows what, and who may be wrong, or who thinks they are right. Frankly it is too stressful to deal with. I come here looking for people that are understanding and who better that the people that are going through the same things.

    I know how horrendous these diseases are from first hand experience and have for 10 years. I am hopeful that this new virus discovery will be able to help us but an also optomistic. I am also not the type to disect, anylize or try to interpret everything that is being written right now. I have better things to do like try and get up in the morning and make it through a whole day before collapsing into my bed. And I hate having to be in my bed as much as I do.

    I just wanted you to know that I truly understand how you feel.

    [This Message was Edited on 06/24/2010]
  18. FibroFay

    FibroFay New Member

    Just wanted to tell you there is a pretty good thread going now over on the ChitChat board for us Bed/Homebounders. We'll soon start Volume 2.

    Would love to have all of you join us. We need you! We need to share survival skills, what we do for entertainment, how we organize our lives, how to maintain family relationships, and much more.

    The ChitChat board is much more peaceful than this board. Hope you can join us!


  19. greatgran

    greatgran Member

    I am getting more and more housebound/bedridden and still haven't figure out what to do with me. Except bed to recliner to computer to bath on some days just bed.

    I can so relate to everyword you said Pink, I would love a board for us so we could vent, cry, laugh and knowing that each of us understands how we suffer.

    My family still don't get it and I get so angry I have got to stop the maddness of them depending on me or calling and asking if I can do this or that.

    I went to chit-chat is there a board or a space for us? Will check it out when I can understand what I read.

    Pink, you are not alone and this was an excellent post I so agree and in the same boat.

    God Bless,
  20. nah.stacey

    nah.stacey Member

    I posted this earlier on a hybernation thread:
    This is how my room is set up:

    My husband, bless his soul, created a haven in my upstairs bedroom, which is considerably large.
    He installed a beautiful mahogany gas fireplace, an incredible kitchenette complete with fridge and microwave. An entertainment area, stereo, DVD player, good size screen TV with a six-ft.
    love sac in front. A huge king size bed. A large bathroom with jacuzzi tub. Double french doors so in the summer I can open them up and feel like I'm outside, or I can go lay out on my deck up here where no one can see me. A large desk for my computer. My room is totally self sufficient. I can go for days without leaving it for anything.

    I know not everyone can have this size space to work with but it is heavenly and peaceful up here. My family calls it my "lair".

    I am obviously housebound and sometimes bed bound although I go from my bed to my luv sac and back to bed again. I try and give my hubby what vertical time I do have the other is dedicated to DR. appts. (for what they are worth).

    I used to be a go go go go person, used to drive my hubby crazy, now he has the opposite, he wants to go somewhere and I have to beg off. This is when he knew something was really wrong. Also the fact that neither one of us know this other woman, that has taken over my body. We grieve for the loss of her quite often. This new woman is boring, tired, angry and sometimes sad. She cries in pain alot and we don't know how to help her. She is so tired all the time we just have to walk away from her or go crazy, well he walks away and I go to sleep.
    Best to you all,

    to ilovepink-

    P.S. On the name Nah, that is what my kids call me. They yell through the house Naaaaahhhh.
    and then they find me. Also my first grandchild is due any day and I didn't want to be
    called Grandma - that's my mom's name - I'm only 45. So I'll be Nanna to them and Nah
    to my kids.
    Mind you they are all grown and gone now.
    [This Message was Edited on 10/27/2009]
    [This Message was Edited on 10/27/2009]