Poll: How do you pass the time while bedridden?

Discussion in 'Fibromyalgia Main Forum' started by JamieBeth, Aug 19, 2004.

  1. JamieBeth

    JamieBeth Member

    I'm curious--For those of you bedridden, how do you pass the time? You can only sleep so much, then what? Watch tv? Read? Meditate?

    I'm bedridden quite a bit with CFIDS/FM, and I find that I can't spend all those hours sleeping or I'll feel worse. I watch tv occasionally, but the noise bothers me. Boredom gets to me quite a bit.

    Jamie

  2. Lucysue

    Lucysue New Member

    I am fortunate enough to not be bedridden. I also still have 3 kids at home so it would be a disaster! If I were ever to have to give ideas I would say Crossword or other word puzzles. It is good mental exercize! I also LOVE jigsaw puzzles but they can be hard on the neck and back so I don't do them much...plus they would be hard in bed. If you like stories but get tired of reading how about books on tape? And this sounds stupid but I always loved to color w/ my kids. Maybe some pastels or good colored pencils. Do they make adult coloring books?? :} It is a good question and I'm sure you'll get good ideas here! Cindi
  3. randicaldon

    randicaldon New Member

    I am an avid reader. I spend lots of time, (probably too much!!) reading. It's the only thing that does the trick for me. It relaxes me, and it takes my mind to other places, so I forget the pain for awhile. That is, until I sit in a position for too long and have to move! Find something you are interested in, get on Amazon.com, and get some books about it! Good luck!

    Randi
  4. songbirdie

    songbirdie New Member

    but other than watching tv, which for the most part insults my intelligence, even with brain fog, I read some. Found the best book light so I can read at night. My dog and cat "visit" me in the bed alot and take naps with me.
    Let me encourage you to try to get out of bed often as possible. I spent most of the winter in bed, I know how it is,but if you can get up, then get up. Sometimes I just walk from one to the next, maybe pick up a toy to put in the right place, just anything.
    blessings,
    Sandy
  5. JLH

    JLH New Member

    I usually sleep 10 hours a night, thanks to my Zanaflex. But when I wake up, I make my bed so I CAN'T get back in it!

    Very, very rarely do I ever stay in bed longer than my 10 hours sleep at night. If I did, I would feel so much worse that I couln't stand it. My pain level is always too high.

    During the day, I do little stuff around the house for 20 minutes, then sit and watch TV for 30 min. My back is in such bad shape that I can't stand up longer than 20 min. at a time. Every time I'm up, I'll put the dishes in the dishwasher, put a load of laundry in, pick up things around the house, etc., but I always move around 20 min., then sit 30 min.

    In the evening, I watch TV, read the newspaper, and/or get on the computer (like now!) because my hubby goes to bed really early and I have to be quiet. Between shows, I get up to do my evening "chores" like put the coffee on for the next morning, turn beds down, make an evening snack, water the flowers outside, etc.

    If I did not MAKE MYSELF to little things between my resting, I would be so stiff (from my arthritis, too) that I could not walk.

    Also, in the evening, while watching TV or reading, I will have my heating pad on my lower back--this is where a lot of my back pain is. And ... I may have my frozen "rice sock" around my neck, resting on my shoulders, to help freeze my neck and shoulder pain. I keep my homemade rice sock in the freezer all the time.
  6. sues1

    sues1 New Member

    We can get more ill by staying in bed, and I also have my times. Find things to make you get up for a few minutes, and then lay down for short while and get back up and do more. Do something that makes you want or have to be up, even though you are tired, even though you hurt.
    Do you do any needle work? Quilting? Want to learn it?
    Can you have a sewing machine sat up near you and make things, even though you stretch out the time to do it?
    Make things for sale or charity. Church Bazaars, nursing home bazaars, AAA bazaars and so forth would welcome your contributions. Or make baby blankets or dolls and teddy bears for needy or sick children? Many things are simple to make and you can help others.
    Contact a mental health office or any organization that deals with older people. Do not be afraid of mental health folks, they are great to get a long with. You would be advised on how to handle such. Old Folks also need attention. You can contribute just by being a friend! Just a call to ask them how they are? Some have no one to check on them. You can invite them to tell you about their childhood and such and they would enjoy telling you about themselfs. Call them once a week or even every day? You can always say that I will call you, please do not call me as I rest alot and my health is not good and the phone would interupt my rest, (whatever).
    Suicide hotline? Runaway Hotline? You might be able to handle something like this? Some places can have the phone ring in on your number during certain days and hours.
    This is minor compared to above, but ask folks to save greeting cards and such. Cut around them in cute ways in the artwork or some in what they say, to use as tags on gifts. A punch would have to be used for a ribbon to go through. A nice gift touch. Pack them up like 10 or more to a pack for sale or for your and your family use?
    Write to someone bedfast in a hospital/sanitarium/nuring home, or armed services or such on a regular basis. You might just light up their day by someone caring enough to drop them a line. Even if it is a few lines and you include a funny cartoon or clipping from the newspaper, you cared enough to brighten their day.
    Organize all those photos you have packed away and put names and dates on the back for others to know who they were!
    If you have children and grandchildren write about your family and growing up, or make a tape for them of such. Get all the dates of birth, locations, proper names and such that you can. Tell of how you lived "back then".
    If interested research your family tree.....
    there is much you can do....but as hard as it is, please try and be up and as normal as you can, when you can. You will benefit in the long run. For me, helping others motivates me and it comes back to helping me......
    Many Blessings and Tender Hugs..........Susan
  7. JamieBeth

    JamieBeth Member

    Thanks for all of the suggestions. They're truly appreciated!

    I guess I should clarify that the reason I'm stuck in bed most of the time is because I go out every three or four days for three hours, or so, and need two days of rest to recover.

    About every week I go for a half-mile walk, do twenty crunches, ten push ups, and gentle stretching. I need help with basic household stuff, but make two of my own meals each day, and change my bedsheets, clean my room and bathroom, and clean up the kitchen.

    I've just found that I want to go out so badly that laying still drives me nuts! But I don't have any choice, because even leaving the house for a short outing puts me in bed for two days.

    Here's the stuff I do while stuck in bed, to add to the list that everyone has contributed to:

    1. Study chess books. I've been taking chess lessons at home once a week for the past two years and have become quite good at it, CFIDS aside. I even play in tournaments once a month.

    2. Watch my favorite tv shows.

    3. Read.

    4. Practice my French by studying French textbooks and watching French movies.

    5. Talk on the phone with my friends.

    6. Listen to the radio.

    7. Do some work. I write one 1500-word biography of Nobel Laureates for a high school textbook company each month.

    8. Have my boyfriend come over and lay in bed with me and talk.

    Anyway, I still get bored with being in bed, as you well understand, I'm sure. I want to be active again!

    Thanks again for the help, and please, if you need someone to vent to, I'm here.

    Jamie
  8. trellisjoy

    trellisjoy New Member

    I get artistic....I have found something very interesting to do and it takes my mind off of "things"...

    I printed out several 3x4 photos of my pictures...) pets children.. grandchildren.. flowers..landscapes...( Pictures I personally took with digital camera)...then I printed each picture again in a 5x7 or 8X10 size in black and white...
    the paper I used is cardstock....

    I bought a large pack of blendable colored pencils... and I tint the pictures with the colors going by the colored photo ....some pictures I tint only the main object in the picture and leave the background b & w..others I leave the main object b&w and tint the background...still others I tint the whole picture...I give only a suggestion of color never darkening anything .....its amazing what these photos look like when thru...you don't have to be artistic at all...

    they look , to me , like reproductions in oil and are beautiful to mount or frame...my sisters have given me several of their photographs to tint for hanging in their home...
    there are times when I can only lay and sleep when I am bedridden ..but when I can I do this and other things to keep my mind occupied...
    trellisjoy
    [This Message was Edited on 08/20/2004]
  9. keke466

    keke466 New Member

    I'm not,still work 5 days per week but on my days off I don't do much. I'm exhausted so I will sleep,if I can. Ilike to read and get lots of magazines. Like to watch tv alot. Will get on here at least one day. Try to call Mom or sister if I feel like talking. But I do get bored especially late at night,live alone. Sometimes I'm ready to go back to work even though I still feel like I've been run over.

    Keke
  10. stagename

    stagename New Member

    On the chit chat board, there is an artist's thread where we post our artwork and discuss it. Come on over. Just click on Message Boards at the top of the page, choose Chit Chat, look for ARTISTS WEEK 10. The next one will be posted saturday and say week 11.

    i'd love to see what you've done. what a beautiful idea.
    they would make great, affordable family gifts in inexpensive frames- like those ones that have 3 or for and look suspended in glass.
  11. foxglove9922

    foxglove9922 New Member

    Oh, Jamie, I can sooooo relate. I've spent far too much of this illness bedridden, not by CHOICE. I've found that even making it out to the couch and laying down there is a real treat somedays, a change of scenery.

    When I've been totally knocked down in bed, I try hard on those days to do little exercises from bed like raising both my arms above my head 5 times and then raising one leg at a time 5 times, doesn't sound like much, but if that's all your body will allow then it's all you can do.

    Wish I had a laptop, that would sure help pass the time. Best of luck. Debi
  12. paul38

    paul38 New Member

    I do:

    Chess and bridge online on a laptop
    Writing on the laptop
    Reading
    Playing penny whistle (took it up when I became ill)
    Playing with puppy
    Watching comedy videos (uplifting)
    Sketching
    Meditation
    Bird watching
    Seed growing..

    ...still struggle with boredom though ! - Good luck to all

    [This Message was Edited on 08/21/2004]
  13. Lynna62

    Lynna62 New Member

    It is wonderful, for about $23 per month you can have up to 3 dvd's at a time. They mail them in pre-paid envelopes so you don't have to pay postage either. Along with getting the new movies that come out sometimes I will order things from stand up comedians (laughter IS great medicine). They also have great travel dvd's so I can see all the places that I would love to visit if only I felt good enough.

    Lynna
  14. darude

    darude New Member

    Thanks for info. does it really get that bad!!!!!!
  15. darude

    darude New Member

    Thanks for info. does it really get that bad!!!!!!
  16. pepper

    pepper New Member

    that we are all suffering with these DD's to varying degrees. My CFS doc uses Dr. Cheney/Dr. Bell's M.E. Disability Scale when reporting (especially to insurance companies) about a patient's ability to do things.

    This scale runs from 0% (bedridden - and there are people with CFS who are totally bedridden) to 90% (able to work full time but suffer severe fatigue at the end of the day). Most of us fall somewhere in the middle.

    Like you, Jamie, I am able to do things on some days but pay the price by having to spend a day or two of "down time", hopefully just on the couch but on the worst days I am forced to go to bed.

    Before becoming ill, I had rarely done a crossword puzzle. I am now a fanatic and pretty good at it. I also read a lot when my brain is working and draw. I have one of those tables that slide up to the bed so I can sit comfortably while I am doing puzzles or drawing.

    I watch a lot of TV - way more than I would like but it doesn't require any brain work when I am really wasted. So if I have to, I have to, but if I can exercise my brain by reading or doing crosswords, I think that it is important to do so.

    Sorry that I don't have anything new to add but I want you to know that you are not alone.

    Pepper


    [This Message was Edited on 02/21/2005]
  17. pepper

    pepper New Member

    that we are all suffering with these DD's to varying degrees. My CFS doc uses Dr. Cheney/Dr. Bell's M.E. Disability Scale when reporting (especially to insurance companies) about a patient's ability to do things.

    This scale runs from 0% (bedridden - and there are people with CFS who are totally bedridden) to 90% (able to work full time but suffer severe fatigue at the end of the day). Most of us fall somewhere in the middle.

    Like you, Jamie, I am able to do things on some days but pay the price by having to spend a day or two of "down time", hopefully just on the couch but on the worst days I am forced to go to bed.

    Before becoming ill, I had rarely done a crossword puzzle. I am now a fanatic and pretty good at it. I also read a lot when my brain is working and draw. I have one of those tables that slide up to the bed so I can sit comfortably while I am doing puzzles or drawing.

    I watch a lot of TV - way more than I would like but it doesn't require any brain work when I am really wasted. So if I have to, I have to, but if I can exercise my brain by reading or doing crosswords, I think that it is important to do so.

    Sorry that I don't have anything new to add but I want you to know that you are not alone.

    Pepper


    [This Message was Edited on 02/21/2005]
  18. summerskye

    summerskye New Member

    My 23 year old son who is legally blind has been involved in this program for many years. He loves the biographies, history and mystery tapes. Many are in-depth college level books. He also gets some magazines on tape. A funny story... A book listed in their catalog was an instructional woodworking book [for blind people??? Goodness!!!] One of the magazines he gets is "Sports Illustrated". Last year, the tape mentioned the new swimsuit issue and said to log on to their internet website to "SEE" it.
  19. summerskye

    summerskye New Member

    My 23 year old son who is legally blind has been involved in this program for many years. He loves the biographies, history and mystery tapes. Many are in-depth college level books. He also gets some magazines on tape. A funny story... A book listed in their catalog was an instructional woodworking book [for blind people??? Goodness!!!] One of the magazines he gets is "Sports Illustrated". Last year, the tape mentioned the new swimsuit issue and said to log on to their internet website to "SEE" it.
  20. summerskye

    summerskye New Member

    or if your computer desk is set up next to your bed, you could access it while bedridden with the keyboard.

    How about:
    1) tracing your family tree? Get involved with genealogy... do it for your kids or grandkids and bring history alive!
    2) learn to build a website
    3) "spend" an imaginary $10,000 on a trip to a far away destination... dream a little dream!