Feeling very down about being bedridden

Discussion in 'Fibromyalgia Main Forum' started by kholmes46, Apr 26, 2012.

  1. kholmes46

    kholmes46 Member

    Not sure if this relapse will last for months or years, but I'm a man in my mid 40s, and I'm feeling very lonely and discouraged. I'm lucky to have a wife who takes good care of me, but I am reallly struggling with this one. Little rituals help throughout the day, but how else are people dealing with the incapacitation of this illness?
  2. MicheleK

    MicheleK Member

    Hi, I feel for you. I have had ME/CFS/FM/POTS for 20 years now and the last 6 were the most challenging I ever faced. I spent most of them flat in bed, lights out and alone because my body simply couldn't take even my husband being in the room with me for too long. It is such a lonely feeling and trying to pass the time productively becomes the main goal so that you can get up each day and feel you accomplished something.

    For me having had a hospital bed adjustable table that I could put my laptop on, tilt it so I could lay flat and be online not only got me through the time but helped me thrive. I joined many groups for the illnesses I have and talking with others in the same boat so to speak has really helped.

    I do recognize that in society in general men do not get the same kind of support women do. For one thing men are brought up to "suck it up" and are not used to sharing their feelings, especially ones of discouragement or depression. As women, most of us find sharing and communicating come naturally. Others maybe have to work at it. I will tell you this, being a man with this disease, you are in a position to really encourage others by speaking up and it's nice to see you did so here. Everytime you speak up about how you are feeling or your experiences as far as what you have learned going through this, you touch a life or two or many. You may never know how many you touched. So thank you for sharing here.

    How long have you been sick? How long basically bedbound?

    I always wonder what I would have done if I had been bedbound before the internet! Can you imagine? The phone company use to have an advertisement for their yellow pages that said: "Let your fingers do the walking." That is my motto. Daily I let my fingers do the walking on my laptop keyboard. Through the internet, patient groups etc. I have a life of sorts that gets me through each day. And though I felt that I would never get well enough to get out of that bed and have an "outside" life again, I was wrong! I am mostly out of the bed now, though still mostly housebound. But oh how good it feels when you get out of the bed. That is my hope and wish for you. I hope you get a break!
  3. gb66

    gb66 Well-Known Member

    The way I've learned to cope is by trying to keep my mind focused on other things. I tend to overthink all the time and it turns into worrying.

    I stay online a lot posting on this board and one other that is for diabetics. I was just diagnosed with type 2 last year. I also have CFS and fibromyalgia and I am housebound, and wheelchair bound when I go to medical appointments.

    I've had CFS and FM for many years. I play games online a lot and recently bought an e-reader (the one starting with a "K". I can't believe how much reading has helped me these last few months. I used to read a lot but had to give it up because of vision problems. With the "K" reader I can enlarge the print. The time not only passes quicker but I feel 100% more relaxed when reading that I do watching tv. It's truly a blessing.

    My husband was not into reading at all. He tended to fall asleep as soon as he opened the book. Now, he has a reader also and has read about 5 books in the last two months.

    I'm sorry you're having so much difficulty but you're in the right place to find people who really understand and can give you support. GB66
  4. kholmes46

    kholmes46 Member

    Been sick since the late 80s. Bedridden periods in '05 and '08. Improved somewhat, but overdid and back in bed now. Feeling fearful that I'll be stuck here for a long time, with worsening symptoms. Too sick to type on a computer, so using an iPod. I'm a former teacher, mountain climber, outdoor enthusiast. Try to take one day at a time and realize things can change. The have before.
  5. harrysmom

    harrysmom Member

    I think a couple of things you said bear closer scrutiny. First, having had CFS and Fibro for 16 years, I can say that I have experienced the periods of being either in bed or on the couch for years and thinking things will never change or get better. Keep telling yourself they will improve because, in general, they do. You may never regain the life you had before you got sick, but I think that over the years things have gotten better. I am a 65 year old woman who had a teaching career that was ended by CFS. The things that keep me from relapse and on the road to improving when I'm low are moderate activity around the house, I mean like just walking from room to room or sitting in a different place, sleeping at night, eating correctly, taking some supplements, and having the correct pain and anxiety meds available. Then you have to find some small interests or amusements that you can handle to make you think of something other than how bad you feel. Over the years I have become an avid reader and I find crossword puzzles and Sudoko very relaxing. I watch interesting shows about history and nature and travel on TV and buy DVD's of quality programs that take me on trips to places I would like to go or discuss interesting subjects to me.

    I am lucky in that I have a roommate that didn't make other living arrangements when I got sick and has stuck this out with me. I have a wheel chair and on my better days she takes me out for a short afternoon trip to a museum or a store and sometimes we go to a concert or movie when I can. The computer helps, too.

    I think even when we're at our worse we have to accept that for now it's going to be like this, but things can change. Also, pushing and overdoing is the worst thing possible. I think that's partly why we got sick in the first place. But, at the same time, you have to at least sit up a while , get out of bed and try to walk around for a few minutes, or go to the recliner or couch and look at something different because just being in bed weakens us in body, mind, and spirit and makes us feel even more useless and "abnormal" than we are.

    I hope this makes sense.....just wanting to give you some encouragement. I hate living like this, but I feel like somehow I've got to go on, if even just for my pets who depend on me. Being forced to care for them over my sick years has really been a blessing because it gave me a reason for having to get up and move, if only for a very short time.

    You hang in there.
  6. kholmes46

    kholmes46 Member

    Too tired to type more now, but your ideas and encouragement are wonderful. Can't tell you how much I appreciate it. I have a feeling this will at least improve somewhat over time. Feel like I've made some new friends, and I don't feel so alone. Hugs to everyone.
  7. kch64

    kch64 New Member

    Just read your post and wanted to give you some encouragement. I've never been bed bound by this illness, however, I've had some very low "lows". I'm better now than I used to be.

    My best piece of advice would be to talk to yourself. Yes. Keep your mind on the positive, not on the negative. Your brain is a very stong organ. Ken, when you're feeling lonely, be your own best friend. Give yourself what you need to get to the next day, then the following day. Tell yourself, you will get better, because you will.

    I don't know what your spiritual beliefs are. Lean on God. Don't question, because you'll just get angry. Just trust and allow yourself to be dealt with.
    It's not an easy road, that's for sure, but you can overcome the biggest obstacles.
    I'm pulling for you and I know you will get better. Listen to music you love.
    Let it fill your heart and soul with joy. It will give you energy. :)

    Hugs and let us know how you're doing.
  8. kholmes46

    kholmes46 Member

    I remember you, too. I will definitely join in on chit chat more, thanks!
  9. kholmes46

    kholmes46 Member

    Thank you so much, and hugs to you, too.
  10. MicheleK

    MicheleK Member

    Hi Ken,

    I spent half the day today reading a new book called: Love and Fatigue in America. The book is written by a man who had traveled all over the world and in his early 40's was hit by what he now knows as ME/CFS.

    I thought if you were able to read, you might want to get your hands on a copy of this book. The author has a way of explaining what we find unexplainable which is nice but what i most like about it is hearing from a man who has this disease. He talks quite a bit about the need to be in bed but the pull it has had on him emotionally.

    All the best to you,
  11. kholmes46

    kholmes46 Member

    Just got a copy of it for my Kindle. That's all I can lift right now, but I'm lucky to be able to read a fair amount during the day. Great suggestion.