10 things I do to make a bedridden life more bearable

Discussion in 'Fibromyalgia Main Forum' started by kholmes, Feb 9, 2006.

  1. kholmes

    kholmes New Member

    I greatly sympathize with others on this board with CFS or Fibro that are mostly or completely bedridden. Thanks for responding to my post. I have CFS and am probably in less pain than many of you with Fibro, but I am bedridden most of the day.

    Here are 10 things I do to make my bedridden life more tolerable:

    1. I have prayer and spiritual reading every morning. I read C.S. Lewis, or contemporary Christian writers. I'm currently reading Reynolds Price's translations of the gospels of Mark and John. I usually can sit on the couch with my feet up for a couple of hours in the morning. At 10:30 every morning, I go back to bed and do a 30 minute guided meditation. You can get meditation CDs and tapes on Amazon.com. I usually end up falling asleep during these meditations, but they make for a good nap, and they leave me very relaxed and peaceful.

    2. I have my laptop on my bed and use it as my link to the world: this board, e-mail, google surfing, etc...
    If you haven't tried it, download the free version of Google Earth from googleearth.com and explore the world. It's amazing software, with satellite photos of virtually
    anywhere in the world. You can type in your address and look at your street from above. Kind of scary! I have an avid interest in world geography and am always reading and researching about places around the world. I love Google Photos also. I just wrote a short entry for Wikipedia on the French mountain climber, Lionel Terray, after I read his memoirs. Look up my entry on Wikipedia.com!

    3. I reserve books from our public libraries online (I live in Albuquerque) and my fiance picks them up for me. I read voraciously, and set reading projects for myself; i.e. reading all of the books by Douglas Preston and Lincoln Child, or I'll read everything I can about Himalayan mountaineering and exploration, even though my former life as a teacher, hiker, and climber, seems like another universe at this point.

    4. I mark things I have to look forward to on a calendar near my bed: our wedding! (even though the pastor will probably have to come to our house), the beginning of the Winter Olympics, birthdays, the visit of a friend or family member... I have my daily and weekly TV shows which I look forward to: The Daily Show, Colbert Report, MASH, Boston Legal, Lost, The O.C. (trashy, but fun!). I try not to watch shows that are too intense, dark or morbid: CSI, etc..

    5. I am learning everything I can about Hollywood and film history, and can watch a lot of great films--with no commercials! on TCM. I order DVDs online through Netflix (about $10 a month). I am currently enjoying Oscar winning or Oscar nominated films on TCM. Here's a project: watch ALL of the films which have won Best Picture since the inceptions of the Oscars.

    6. I try to count my blessing and be glad for what I CAN do still: all of the above activities, and I can sit up to play my guitar for a short part of the day. I am learning Celtic and bluegrass guitar. On bad days, though, I don't play at all, and I just lay in bed and zone out in front of the tube.

    7. I am VERY fortunate and blessed to have a fiance who makes my meals, helps get me to the doctor, and frequently laughs with me, even though I--and she--certainly have times in which we cry and despair. But I try not to cry or be absolutely miserable for more than about twenty minutes at a time. Invariably, when I feel worse physically, I experience fear, grief, and despair, and I force myself to remember that I'll feel better and my emotions will ebb and flow, too.

    8. My fiance takes me for short drives on the weekends, even though she often has to roll me in a wheelchair to or back from the car. Often, these car rides are only about fifteen minutes long.

    9. I try to do one good thing a day for someone else. Sometimes, I'll send an encouraging e-mail to a friend who has schizophrenia. Or I'll call a friend who has heart disease (but only on days I'm up for talking on the phone). It's too easy with this illness to become completely self-absorbed.

    10. I remain cautiously optimistic about getting better, though in the last year, I've done some very tough psychological and spiritual work. I'm trying to learn to somehow accept my disabled life, such as it is, even if my situation doesn't change, or even if, God forbid, I should worsen and die. I continually research CFS and new treatments, but try not to let my research become obsessive or let it scare me. I absolutely believe that no matter what happens in my life, Heaven is real, and my Christian faith supports me, even though at times, honestly, I feel very angry with and even abandoned by God. But I have a strong prayer life. Reading books about near death experiences (i.e. Embraced by the Light, 90 Minutes in Heaven), has only confirmed my belief that everything will be okay, and ultimately, we have a world of health, joy, and unspeakable beauty awaiting us in the presence of God.

    Sorry about the length of this post, but I hope it helps. God bless all of you who also suffer from these unfathomably strange and mysterious illnesses.

    KHolmes
  2. angelkisses6

    angelkisses6 New Member

    Hi i just read your post and wanted to thank you for your tips and also i know you dont know this but you helped me in anouther way too,you see many days i have to stay or need to and dont in bed you see i force myself to get up even if its to just sit on a chair on this thing cuz i dont want anybody thinking ian just being lazy,and reading your post helped me to realize that iam not alone and its not all in my head,god bless you for your timing and i prey that you are doing better,take care,marieann
  3. kholmes

    kholmes New Member

    You're welcome, Marieanne! You are definitely not alone.
    Kholmes
  4. Shannonsparkles

    Shannonsparkles New Member

    Dear Kholmes, I love your gentle spirit and your faith. And that you have an angel-eye view of our planet earth via satalite!

    I'm glad you are getting married! I'm 23 years old, housebound and mostly bedridden. I yearn for a husband. How did you find someone to marry?
    (((peace))) Shannon
  5. foxglove9922

    foxglove9922 New Member

    Very inspirational, thank you for sharing.

    For the single person, you may look into CFS/FM singles on the Yahoo site.

    Best wishes to all.........foxglove
  6. NightAngel

    NightAngel New Member

    KHolmes, I *LOVE* your attitude! You're so sweet and caring, too. Keep up the good work!!!

  7. kholmes

    kholmes New Member

    I met my fiance two years ago, after being disabled the first time for six months, and then getting back to teaching 3/4 time. We met at a St. Patrick's Day party, held by the parents of a teacher friend in my department.
    I have no idea why she's marrying me, since I'm so disabled now! But I am very lucky to have her, since my family lives in Minnesota and I'm in New Mexico.
    I hope you can find someone, too! It sounds like there is a singles site for those with CFS/FM.
    Kholmes
  8. pirtpain

    pirtpain New Member

    Your posting is very enlightning. I too am in be alot and do some of the things you mentioned although not as many of those being as productive as yours. GREAT POSTING!!

    PIRT
  9. Adl123

    Adl123 New Member

    Hi,
    Thank you for your inspiring post. I, too, do many of those things. I will admit, though, I'm not consistent. I'm going to remember ou, and maybe I'll improve.

    God bless,
    Terry