[Susi]

I have been grappling with this since Rehab, and have decided to throw it out to you, to see who actually feels the same as I do and what you have done to change it. You see in rehab during the week we were busy and they discouraged one from going to bed/lie down when one was tired before supper and compulsory bedtime 19h00. But on weekends different story. If you decided to get up and wheel yourself up and down the passage or venture outside, that was ok. The minute you decided no, well then to bed you go and stay. To break monotony, you were turned every 3 hours. Since then, I have viewed bed as a "prison".

Ever since I was in Rehab, and on return, I have dreaded the thought of going to bed. No matter how much my husband tries, I dread the thought of going to bed. I will fight to stay awake at night, to just not go there. Once I am in bed, thats it. I get put on my sleeping side, and stay there. Oh I can roll over onto my back, but seldom do, as it changes nothing.

I depend on my husband to get me up and out of bed once I am awake.

I have tried everything possible to change my mindset about my bed, but don't succeed. There is nothing worse for me, than to lie awake and wait until hubby has had sufficient rest, and then to ask him to get me in my chair. I have tried meditating and praying, but this does not work either.

I have to force myself to bed early (22h30) because I need the sleep and sleep is good for the body and its healing process, but I inevitably am awake by 04h00/30 in the morning.

How do you guys view your bed? If similar attitude to mine, what have you done to overcome this.

How do you turn your bed from a prison to a place of refuge and peace?

[wheeliebear75]

Have you tried using a "transfer board"? I've known of many a C5 quad that was still able to transfer with one of those babies.

Having nothing to do while in bed would turn it into a prison of sorts. I'm lucky in that I have an MP3 player I can always listen too if for some reason I need to stay in bed while the B/F is still sleeping(generally when I'm having lot of back pain because otherwise I can get into my chair on my own and just physically need more horizontal time than my mind can tolerate LMAO). I have had bouts with discs that MADE me stay in bed.......the room turns into a closet after about 3 or 4 days strait. So I can see why you may feel like that. I can only suggest that you have something to do at your bedside if you aren't able to get into the wheelchair on your own. Best of luck.

[smokymtn memories]

I'm c4-5-6 incomplete. I don't know how much movement you have, but we found a small stand/table to put things I need close at hand. I read, listen to music, and my husband put a tv in the bedroom so the remote is there too.

I've also discovered I need to think about getting a different/better bed. Besides the neck injury, I also have DDD in my lower back and I'm finding out that I'm going to have to invest in a way better mattress. It's no fun going to bed and being uncomfortable.

Hope you find something that works for you.

[KarenFerguson]

I was just discussing with my husband this issue after reading your post. He feels the same way that our bed represents a sort of prison for him, because he can't get out of bed with out someone helping him. Here's what hubby suggests:
-Have a strict routine. Go to bed earlier enough so that your partner can get enough sleep and still get you up when you need to.
-If you have guard rails on your bed, take them off (if you can), this will aesthetically make your bed appear more "bed" like.
-We have a hospital bed (queen) that goes up and down along with the head and feet raising and lowering as well. This has allowed my husband a lot of freedom. He can basically sit up in bed by himself. Also, it's nice for watching TV.

Hope these little suggestions helped in someway. Funny, I never talked to my husband about this. He's happy that I'm a "morning person".

[rkzenrage]

It can be both... mostly prison.

[KimAndSophie]

Susi, on Oct 13 2007, 01:57 AM, said:

To break monotony, you were turned every 3 hours.


Once I am in bed, thats it. I get put on my sleeping side, and stay there. Oh I can roll over onto my back, but seldom do, as it changes nothing.

This is quite worrying! The reason they turned you so much in rehab wasn't to "break up the monotony", but to prevent you fom getting pressure sores. They can happen pretty fast if you lay in the same position for a long time.

Quote

I have tried everything possible to change my mindset about my bed, but don't succeed. There is nothing worse for me, than to lie awake and wait until hubby has had sufficient rest, and then to ask him to get me in my chair. I have tried meditating and praying, but this does not work either.

I have to force myself to bed early (22h30) because I need the sleep and sleep is good for the body and its healing process, but I inevitably am awake by 04h00/30 in the morning.

You should start a schedule. Go to bed when you start to feel a little bit tired, and even if you don't get enough sleep get up early in the morning. If you do this for a few nights then your body should adjust and you can go to bed at a normal time and sleep (because you will be tired), and wake up at a normal time and not in the middle of the night. If you feel tired during the day force yourself to stay awake until a normal bed time, then when you go to bed you will fall to sleep faster, and wake up at a regular time. It will also help your husband a lot because he will be getting enough sleep to function and feel good. Remember that there's a really good chance that it's not only affecting you, but him also. If you start treating your bed like a bed (for sleeping and resting and being with your husband), then it wont feel like a prison. You are making it a "prison" now by treating it as if it is one. You are "punishing" yourself by messing up your sleep schedule, and by blocking yourself off from everything when you are in bed.


Try listening to some music, or watching tv, or reading a book. If you are going to say you can't turn the pages, then get books on cd or tape. Most libraries have audio books that can be signed out.

Oh, I almost forgot! I think of my bed as.... a bed. It's a place to sleep, and to be with Julian. That's it. It's also a good place to fold laundry lol.

This post has been edited by KimAndSophie: 14 October 2007 - 09:34 AM

[KimAndSophie]

KarenFerguson, on Oct 14 2007, 12:14 AM, said:

-If you have guard rails on your bed, take them off (if you can), this will aesthetically make your bed appear more "bed" like.

That's a nice thought, but a lot of people use the rails so they can roll over, sit up etc. on their own. I don't have rails on my ed, but on my old bed I had a "bed cane" so I could roll over. I could hook my arm around it and it helped a lot.

[barber1]

My bed is great when I'm tired but I feel the most parelyzed when I wake up in my bed not having the freedom to move around.......then I quickly jump (I mean lift my body) in my wheelchair get ready for work go to work and forget I'm parelyzed

[Cheshire]

If possible, maybe try "treating" yourself to a short nap in the afternoon. Have someone (hubby?) either waiting to hear you call (my mom had a dinner bell sitting at my bed for this) or watching a timer for a duration you set. When YOU are ready, then you're able to get up.
...Or something similar. Just spitting out ideas.

[Susi]

Hey Everyone, thanks for contributing! I have taken all comments into consideration and have gone the music route. I now have a portable Radio/CD player to listen to at night now, the only remaining item though is having enough movement to turn and switch on CD when finished. It has given me something new to discover, and it does help. I cannot read or sit up in bed yet, but the soft meditational musi does help. Will be investing in some audio books later on. So yeah, thanks I don't know why I never thought of this before now.

[4Wheels]

I've been basically stuck in bed for the last 4 years (because of a sore on my right leg - which had to be ampuated anyway)..... My wife used to transfer me in and out of bed.... but she tore up both knee caps doing so..... Only when my son comes out and has time do I get in my chair! Used to drive to work 3 days a week, drive out to DJ on the weekends...
It is a Prison...... The only escape I have is to work and every once in a while come here to see whats happening.... I had insurance at work and Medicare and neither would purhase me the overhead lift I needed to get out of bed.... (Said it was a convenience) bought me a Hoyer - Which cost as much as the overhead lift....... My wife couldn't drag it around on our carpeting...

I did just purchase a $3,200 Sealy memory foam mattress with adjustable frame.... If my new webstore does well, I'll buy my own DAMN lift.....

Jim