Express your feelings of being hand cuffed to your bed!

[Derek Conklin]

I'd be very interested in hearing what you go through and feel while in one sense being hand cuffed to your bed. I'll share a few of my daily feelings of being hand cuffed to me bed. You know that no one who has ME/CFS can come close to understanding or knowing what it's like for us to be hand cuffed to our bed. But here we understand very well this pain.

Some of my hand cuffed moments, Many times at night I wake up not able to breath because of my allergies in my nose, but don't have enough strength to lift my head and body to get up and sit in a chair to help my panic attacks from not being able to breath!
Hand cuffed to my bed when something really important needs to be done, and I'm not able to get up, or even find strength to turn over into a new position. I can just hear my cuffs clinking to the rails on the edge of my bed! I'd share more, but want to hear some of yours!

 

[Rufous McKinney]

oh thats tough....

My chair. I can be up in the chair, mostly. With some lie down breaks. Altho its not a very good thing at night, when I experience really bizarre neck issues.

The chair fits my body, where as most of the other furniture won't work.

But I"m cuffed to, my version. Because ultimately waking up and getting actually up feels like a New York City marathon, in bad weather and I lost the race hours ago.

I"m up frequently with bladder stuff and sometimes unhappy bowels, and what shall I blame for that today.

Let see....I can always blame a piece of bread.

Maybe I"m a bit quasi functional between 1 and 3 pm. I am grateful for what I can do. its so limited, but I know it could be more limited.

I have nice views by my windows...to gaze out! that helps.

 

[Derek Conklin]

I really like your comment of being cuffed in your chair. Now I don't feel so alone and so bad about my cuffed moments! So glad that you can have some happy moments looking out your window! Oh......this makes me think of a little story I read a bit ago that touched my heart with a few tears of encouragement! It's called 2 men in a hospital room!


Two men, both seriously ill, occupied the same hospital room. One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs. His bed was next to the room's only window. The other man had to spend all his time flat on his back. The men talked for hours on end. They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation. And every afternoon when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window.

The man in the other bed began to live for those one-hour periods where his world would be broadened and enlivened by all the activity and color of the world outside. The window overlooked a park with a lovely lake. Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every color of the rainbow. Grand old trees graced the landscape, and a fine view of the city skyline could be seen in the distance.

As the man by the window described all this in exquisite detail, the man on the other side of the room would close his eyes and imagine the picturesque scene. One warm afternoon the man by the window described a parade passing by. Although the other man couldn't hear the band - he could see it in his mind's eye as the gentleman by the window portrayed it with descriptive words. Days and weeks passed. One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep.

She was saddened and called the hospital attendants to take the body away. As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone. Slowly, painfully, he propped himself up on one elbow to take his first look at the world outside. Finally, he would have the joy of seeing it for himself. He strained to slowly turn to look out the window beside the bed. It faced a blank wall. The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window. The nurse responded that the man was blind and could not even see the wall. She said, "Perhaps he just wanted to encourage you."

 

[Blue Jay]

Thanks for that moving story, @Derek Conklin. Only recently my son and I were discussing how our lives (we both have ME) have become restricted in many ways but we can see details which other 'healthy' people miss.

Watching birds through a window, for instance. At this time of year the bees and butterflies are making the most of our untidy but beautiful garden.

It doesn't always stop me having a good moan now and again but I do appreciate those things I couldn't fully enjoy when I was able to dash around.

 

[CSMLSM]

Beautiful story got me a little emotional. If only we all cared for each others state of my mind as much without a reward other than the joy of the other.

 

[Derek Conklin]

Thanks for that moving story, @Derek Conklin. Only recently my son and I were discussing how our lives (we both have ME) have become restricted in many ways but we can see details which other 'healthy' people miss.

Watching birds through a window, for instance. At this time of year the bees and butterflies are making the most of our untidy but beautiful garden.

It doesn't always stop me having a good moan now and again but I do appreciate those things I couldn't fully enjoy when I was able to dash around.

Yes, thank you for sharing your good moans! I think I should post about our good moans too! I'd love to see your garden. Do you have any pics of it?

 

[Derek Conklin]

Beautiful story got me a little emotional. If only we all cared for each others state of my mind as much without a reward other than the joy of the other.

Thank you! Yes I Love to read story's like that too! Here is another touching story that is really good that is like us!

This is a story from a book written in 1875 by a man named Robert Boyd. It's called the "Trials and Triumphs of Faith." It's put me in tears, more than once. A man tells us that he was spending several days in one of our western cities. He put up at a hotel, and one morning he heard, while up in his room, the most wonderful whistling he had ever listened to. It seemed like the note of a bird, but he thought it could not be that, for there was a perfectly regular tune kept up with much power.

Though he was in the third story, yet the music came gushing up in its sweet melody, and seemed to fill the whole house. He ran downstairs to get a sight of the wonderful performer, looking every man that he met in the face. At last, he asked the clerk who it was that had such amazing power as a whistler. Laughing at his simplicity he pointed him to a canary bird that had been trained to perform in this way, and was valued at $150."How was that bird trained to sing this way?" the gentleman enquired. In reply the clerk told him that during the training process the bird is nearly starved and shut up in a room that is almost dark. While it is under this severe discipline, and its attention undivided, a bird organ is made to play this one tune over and over again, for days. Hearing nothing else, and taught by his troubles, the poor little bird takes up the tune, which he performs so perfectly.


Thus it is that He permits people to be afflicted that they may learn the heavenly song. He shuts them up in the dark room of sorrow, away from the tempting sights and sounds of the world, that they may, without distraction, listen to his voice and learn to sing the higher melodies of glory. When the song of Grace is fully learned, he brings them into a large place, sets their feet upon a rock, and others learn from them this sweet song of Love!

I think with many of us, were still in the basement singing, or squeaking, but with me, I've learned to do it with a more thankful squeak than before! Lol......

 

[CSMLSM]

It makes a great point that learning from pain and despair can come great clarity through hard experience even though it may start Dark it can end in some light. Also mans capacity for cruelty to animals for their own pleasure is something we should not be a part of ourselves, even if it brings something we find beautiful it is inherently evil.

Thats at least what I got from it but I suppose that is my life experiences colouring my view.

 

[lenora]

Why do we have to be handcuffed to our beds? If our arms are free, then there is an entire world out there. Yes, having windows with a view helps tremendously....I agree. Sidewalks are good viewing places, the view doesn't have to be a masterpiece. Look at @Howard & what he sees and the photos he takes for us.

If we merely imagine that we're bed bound (and not worry for how long), then we're free to study anything we want, take a trip, (in a book, or watch TV) read a great book of some sort, talk on the phone (OK, that's limiting), but I never set a time factor. In my mind, I have to be in control and I can't limit my thoughts in any manner whatsoever. Yes, someday being "handcuffed" may occur, but I'll fight it as long as I can.

Perhaps that's just part of getting older, you learn to give up certain things but fight hard to keep others. My husband loves gadgets, so he's forever programming things with multiple buttons (half unneeded) but it does free me up in certain areas. We think of other more, also. After all, we're not the only ones who are ill, and somehow we can connect with them in our thoughts. We understand, at least some of it.

We used to travel a lot, and travel books or show are always of interest to me. No, of course I won't travel again....probably not to even visit my daughter and her family in CA. (Can't negotiate stairs...and everything in her house is down), but fortunately she understands and is here as often as possible, often with the entire family. Photos are constantly sent by her and we see everyone (including our daughter & family here) as much as possible. Life has so many stages.....don't miss any if it can be helped. We now have grandchildren in university....another view of the world.

I do hope those of you who are younger will have your day in the sun....or as close to it as you possibly can. I've made arrangements to go to Paris this winter....I know exactly where we'll stay and what we'll be doing. We're taking 6 wks. and even though we've been before, much has been added and I'm most anxious to go. In reality I'll be home, but my mind will be in Paris, in winter. Croissants, anyone? Yours, Lenora

 

[Derek Conklin]

I like your positive and adventurous mind Lenora! Yes Paris, croissants, and tea or coffee!