[Scooby Gimp]

Dear fellow gimps,


I am a 28 year post injury T 4/5 SCI, with a weak left arm from a brachial plexus stretch, and am having trouble finding a good position to sleep in. I was injured at age 22 and turn 50 later this year. I used to like to sleep on my right side while hugging a pillow, with a smaller pillow between my thighs. But something changed over time and now my ribs ache whenever I sleep on my right side, probably from my scoliosis crushing my right rib cage. I slept on a water bed 19 years and now sleep on a tempurpedic mattress.

I can only sleep on my belly for an hour or two before my lower back, which I supposedly can't feel, hurts too much. I don't like sleeping on my weak side as my circulation is easily cut off in my left shoulder. And I've never been able to sleep on my back but wish I could. I've heard of people who lean forward over their knees, with a pillow in between, to sleep. Anybody living with an old SCI have any unique sleeping positions as a result of accommodating your injury? I'd like to hear how some of you sleep and if you turn, or how often you turn at night.

Help me get a good night's sleep by letting me know how you do it and what tools--pillows and pads--you use.

Thanks for the help, even smart ass comments from E-Dog are welcome. I look forward to some responses regarding creative sleeping positions.

Scoob

[E-DOG]

I sleep standing on my head.
Now ask me which head.

Smart ass comments indeed

E

[nomis]

Well...some years ago I got a severe retinal detachment and in the repair procedure they pumped a gas into the eye and told me to maintain an upright position including when I slept. For a few weeks I propped myself up at night with cushions to sleep. I was surprised at how quickly and how well I adapted.

This doesn't solve your problem and all-in-all is most likely useless info. But it might suggest you widen your thinking to consider the ridiculous because it might work. I'm not suggesting sitting up as I did. I'm suggesting you consider anything.

[Scribbler]

As everyone is different we all have different sleeping positions; even AB people do.

I sleep on a Roho mattress and lie on my left side. I have a small pillow in my back to stop me rolling backwards and a pillow between my knees.

I used to have a turn in the night, but now I can usually stay in that position all night. I go to bed around 10.30 pm to 11 pm, and start to get up around 7 am.

The Roho mattress is ideal for me as I can lie there for hours. It just leaves a pink mark on my hip, which goes as soon as I turn.

As I have full feeling I cant lie or sleep on my back for long as its too painful. It puts too much pressure on my tail bone, which other SCI people who cant feel don't realise, so they can end up with a pressure sore. In 51 years I've never had a pressure sore and don't intend to ever get one.

I also sit on a Roho cushion and can stay up all day, so with sitting on my bum all day the last thing I want to do is lie on my back all night.

Sleep well.

This post has been edited by Scribbler: 24 January 2009 - 09:05 PM

[khoac6]

wow, scribb's reply was very helpful! i've wondered these same questions, im surprised theres not more replies.. anywhoo... my bed routine:

i get put down around 8'ish and turned on my left side (pillow stuffed in back, 1 betweem my knees) for about 6 hours.. get turned over to my right between 1-2am until 8am and up in chair.. now i sleep on a foam mattress that came along w/ my medical bed upon release from rehab which i've had for 8 years now. i often wonder how soon will i need a replacement..? i do want to get something a lil' more hi-tech like scribblers ROHO, to maybe spare my family's/providers "mid night" wake up call, and just stay on my one side thru the night..

great post! wish there was more insight from others =/ (but i must agree, E-DOGG'S remarks do give a good chuckle... 8-)~

This post has been edited by khoac6: 23 January 2009 - 08:34 PM

[araitn]

Hey Scribbler, does the ROHO mattress go on top of a regular box springs and mattress or just on the box springs, or what? Just curious, as I was thinking about getting one. I've not had any problems with pressure sores, but I have to set my clock to roll over a couple of times per night because if I don't I wake up with a sore hip bone.

[WildKat]

Scooby Gimp, on Jan 22 2009, 05:02 PM, said:

Dear fellow gimps,


I am a 28 year post injury T 4/5 SCI, with a weak left arm from a brachial plexus stretch, and am having trouble finding a good position to sleep in. I was injured at age 22 and turn 50 later this year. I used to like to sleep on my right side while hugging a pillow, with a smaller pillow between my thighs. But something changed over time and now my ribs ache whenever I sleep on my right side, probably from my scoliosis crushing my right rib cage. I slept on a water bed 19 years and now sleep on a tempurpedic mattress.

I can only sleep on my belly for an hour or two before my lower back, which I supposedly can't feel, hurts too much. I don't like sleeping on my weak side as my circulation is easily cut off in my left shoulder. And I've never been able to sleep on my back but wish I could. I've heard of people who lean forward over their knees, with a pillow in between, to sleep. Anybody living with an old SCI have any unique sleeping positions as a result of accommodating your injury? I'd like to hear how some of you sleep and if you turn, or how often you turn at night.

Help me get a good night's sleep by letting me know how you do it and what tools--pillows and pads--you use.

Thanks for the help, even smart ass comments from E-Dog are welcome. I look forward to some responses regarding creative sleeping positions.

Scoob

How about getting a long body pillow or even one of those big pillows a lot of women use when they are pregnant. Apparently the husbands like them too because they are really comfortable and support your body well. You can support the parts of your body you need and try out different positions. You could even try it with a rolled up blanket first.

[Trinity]

I sleep on my front as a rule, generally I find it reasonably comfortable although after a recent incident which involved a lovely burn to my toe (pictures available on request! LOL) I have spent a reasonable amount of time sleeping on my side. Unfortunately I never seem to sleep as well but it is tolerable. I sleep on a regular mattress with a memory foam top.

[StillFingers]

I've been with sci for almost 31yrs and have usually rotated sleeping positions every other night, on back one night, on my right side/kinda face down the next night. I cant turn myself. Lately, because of several bad bedsores...long story...i'm being turned every 8 hours, left, right, then back.

I use a 4inch foam mattress with a 2inch memory foam topper and 2inch thick merino sheepskin (from New Zealand; the land of Nomis.) This combo and positioning has always worked for me throughout the years. When i'm on my sides i use a firm king size pillow on my back to keep me from rolling back and keep a softer regular pillow between my knees; i also use a firm memory foam pillow for my big head lol.

I'm wondering if i'll be able to go back to my regular routine, idk, i'll update this topic later this year...6 bedsores gone, two to go and healing slowly but well, my wound care nurses are happy, as am i. Recent issues with hyper-granulation have gone and both wounds are looking good; healthy skin is growing back.

Hope this helped, great topic.

Jerry

[lil jo]

This will be kind of hard for me to explain but I will make an attempt in case it may help someone else. I am a T3-5 complete para and I sleep on a regular twin size mattress...nothin' fancy at all about it. Anyway, I sleep w/ my dogs so I sleep to give them room, but it also allows me to sleep pretty well most nights. Anyway, I start with laying my right leg diagonally toward the bottom left corner of the mattress. I then roll a bit to my right side with my left foot tucked behind my right knee. After it is in place I then roll as far as I can to the right...most of the time my left foot comes untucked and I have to retuck it behind my right knee, but after I get my blankets pulled up and my dogs in their places, I am able to sleep comfortably through the night. I start off with my right shoulder down on the mattress (completely laying on my right side, duh right, lol) and then right before I fall asleep, I am able to slide my right shoulder to the side and lay on my back with my legs still in the same position. Typing this out I can see how it may sound completely uncomfortable and laying this way may hurt some or all of y'alls backs, but laying this way doesn't bother mine so maybe...Anyway, if y'all understand this novel I have begun on how I sleep, I am hoping maybe it will help someone out there. Take care y'all!

[JesseB]

I usually sleep on my sides, with a pellow between my knees. And I usually wake up once, or twice a night, so when I wake up, I turn, and go back to sleep.
Sometimes I try and sleep on my stomach.. But never usually works out cause it's kinda uncomfertable.

[Texaswheelz]

The majority of the time I sleep on my sides with a big thick pillow behind me to keep me rolling backwards. As I grew accustomed to in Rehab, I can't sleep more then 2-3 hours without waking up and turning to my other side. Every once in awhile I'll fall asleep on my back while watching TV, but normally doesn't last long. I try and try to sleep on my stomach, but it is just to uncomfortable for me as the whole time I lay on my stomach my lower back muscles and abs spasms. I can lay there for a hour and they'll do it the whole time.

[Quad65]

Been a quad for over 43 years. Before my accident, I used to sleep on my right side, sort of in a running position. For a couple years after my accident, I slept on my stomach with an acrylic fleece-roll under my shins with my feet hanging off the end of the bed. Then, I went back to sleeping on my right side exclusively, again in the running position with my right leg straight and my left leg bent. I like a firm mattress with a memory foam topper under the mattress pad and sheet. Sometimes I'll put a sheepskin under my left knee and foot for pressure relief. I only use a pillow under my head; I can roll onto and off my back easily, so no pillows behind me. No need for periodic turning. Never been able to sleep on my back since birth.

[Scooby Gimp]

Dear fellow sleep struggers,

Great gob of ideas guys and gals thanks. Except for E-Dog. Kidding I Love you E-N. I understand lil Jo-good idea. I do have a full thickness memory foam mattress. I'm going to try the fetal position on my right, with my shoulders flat. It sounds "twister" but when i sleep to my right i wake up like that sometimes any way from falling backward. I hug a pillow and have laid forward, as opposed to all of you who put the pillow behind your back. I have heard of crazier Ideas than Scribbs. I too used to be able to sleep through the night on one side. Sadly, i can't anymore cause of the aches but at least it keeps m turning. I knew a tennis player Randy Snow, who at one time could only sleep bent forward laying over his legs. This has been helpful. I think the pain on my right rib is from HO--heterotropic ossification.

Does anybody know if HO hurts?

The Scoob

PS.Tip of the hat to E-Dog. What is that grass you stuff your mattress with?

This post has been edited by Scooby Gimp: 24 January 2009 - 06:39 PM

[Scribbler]

araitn, on Jan 23 2009, 09:09 PM, said:

Hey Scribbler, does the ROHO mattress go on top of a regular box springs and mattress or just on the box springs, or what? Just curious, as I was thinking about getting one. I've not had any problems with pressure sores, but I have to set my clock to roll over a couple of times per night because if I don't I wake up with a sore hip bone.

To answer your question araitin. My Roho lies ontop of a 4" foam mattress, which has a waterproof cover; in case of accidents.

I just have the 2 central Roho sections; the top and bottom sections are foam filler panels. This is because they're expensive and I only need to protect my hips and shoulders.

All 4 sections connect together by poppers, so I usually swap them around for better wear. The secret of using the Roho is the amount you inflate it; too hard and its not effective. It might look like its quite flat, but once you lie on it the air is displaced, making the mattress fit your shape.

All my PA's, friends and even the District Nurses want to try my bed; they find it very comfortable. Unfortunately I'm not on it at the time...

I don't know why scooby gimp thinks my sleeping habit 'crazy'? He asked for peoples feed back so that's what I did.

I don't always sleep through the night, it depends on many factors. I try not to have worries when I go to bed, I also have just a small light on, to relax and prepare my mind (however crazy ) for sleep.

Having full feeling isn't a luxury and can be a burden, so if I don't get my shoulder or legs in a good position I can be woken many times by the pain.

All in all, I'd say the Roho has allowed me to lie for longer periods in one position without getting a red hip. Over the years I've tried many other mattresses but I can never lie for as long on those; personally I prefer the Roho.

I think there's another company that makes a similar style mattress, which is cheaper.

Scrib's

[araitn]

Scribbler, on Jan 24 2009, 04:49 PM, said:

To answer your question araitin. My Roho lies ontop of a 4" foam mattress, which has a waterproof cover; in case of accidents.

I just have the 2 central Roho sections; the top and bottom sections are foam filler panels. This is because they're expensive and I only need to protect my hips and shoulders.

All 4 sections connect together by poppers, so I usually swap them around for better wear. The secret of using the Roho is the amount you inflate it; too hard and its not effective. It might look like its quite flat, but once you lie on it the air is displaced, making the mattress fit your shape.

All my PA's, friends and even the District Nurses want to try my bed; they find it very comfortable. Unfortunately I'm not on it at the time...

I don't know why scooby gimp thinks my sleeping habit 'crazy'? He asked for peoples feed back so that's what I did.

Thanks for the answer, Scribs!

I've been sleeping on my pre-injury pillow top mattress since my sci (15 months) and I believe it is about worn out. In order to be able to transfer into bed, my friends modified my bed by taking out the box springs and putting my mattress on plywood, which lowered it to the level of my chair. I could now easily transfer into the old height of my bed, but it sure did help out when I first came home.

I was just wondering how best to utilize the ROHO mattress and you've answered my questions. I know what you mean about the properly inflated mattress looking like it's kind of flat, as I have a ROHO cushion for my chair.

After seeing the pictures of your PAs, I can understand why you are upset that you weren't in you're bed when they were trying it out!

I'm also not sure why scoobygimp thought you have crazy sleeping habits? Your's seems to be the most conventional of the bunch, as some of them sounded like they were playing a game of twister as they were dozing off to la la land. I, like you, sleep on my side with a pillow between my legs and would prefer to sleep on the same side for the entire night.

Thanks again!

[Scribbler]

Hi again araitn,

I'll attempt to upoald some photos of my bed and Roho mattress, but this configuration wont suit you.

I sleep on an electric bad, which does go down very low and looks like a conventional bed but I usually have it raised. I need this type of bed so it can be raised to make it easier for my PA's to work.

If the pic's upload successfully you can see the filler panel at the end; there's another at the top.






I hope this helps.

Scrib's..

[araitn]

Thanks for the pictures Scribs. You're mattress setup looks just like I had imagined from your description.

[Scooby Gimp]

Scribs,

I like your set-up. Where do I obtain a ROHO mattress topper and what do they cost? The price won't scare me. I have a funding source. I have a mate and a king size bed but it appears I could just put the ROHO topper on my side of the bed--under my aching ribs. Right?

Spinning the wheels,

Scoob

PS. Thanks to all who shared. All our sleeping issues seem unique but similar. I thought I'd hear more crazy positions, like E-Dog's. If I could sleep on my head I would because it is the hardest part of my body but my skull isn't flat on top--not yet. I believe I smoke a doobie--a scooby doobie-- and look around for a piece of ROHO about 4 foot by 4 foot so I can lay my upper body--and my HO'd Ribs-- on it.

PSS Anybody have any info on the effects of pressure on Heterotropic Ossification. Don't let this thread die yet. I sense there are more wired sleeping styles to be reported.

[Scooby Gimp]

PSSS. Scooby gimp is crazy one-armed MO FO himself and thinks crazy is far superior to normal. No offense was intended to Scribbler, Araitn, it was a compliment. Scribs craziness, E-dog's craziness, Lil Angle's craziness, Nomis's craziness and our collective quirks are the shining lights that illuminate the full spectrum of human existence.

Yours in the struggle-Peace out.

Scoob

Going for another doob.

Yes I can roll one-handed. As we say when toking "invention is the mother of necessity." So I'm hoping to find the perfect, comfy, crazy sleeping position to relieve my chronic pain. No one can toke 24 hours a day--not even E-Dog and I both on 12 hour shifts.

[twisted_ophelia]

I swear by my body pillow. I can't live without that thing. It's huge and it's like having another person in the bed with me but so worth the space it takes up. When I'm traveling or staying somewhere other than home, I make sure to have enough pillows to use as a makeshift body pillow. I have the body pillow beside me and usually sleep on my left side, with one leg hiked up onto the body pillow in a sort of flamingo position. A couple times a week, I switch the body pillow to the right of me and keep the other leg up on it in the flamingo position. For me, it helps with chronic back pain and if for whatever reason I can't sleep with it or have enough pillows, I sleep with a pillow between my knees. As far as a mattress goes, I have a regular queen sized one with an Obusforme egg crate foam thingie on top. I turn over onto my back every few hours and then back to my side again but I don't have a set schedule for it, I just do it as I feel the need arises or when I wake up (I wake up frequently at night).

[Scooby Gimp]

Thanks twister,

I have one of those full-length body pillows. I bought it several years ago but with two testimonials I'll have to find it and try the long pillow again. I didn't have the same trouble when I bought the body pillow so I may discover new benefits.

Scoob

[Scribbler]

Scooby Gimp, on Jan 29 2009, 09:15 PM, said:

Scribs,

I like your set-up. Where do I obtain a ROHO mattress topper and what do they cost? The price won't scare me. I have a funding source. I have a mate and a king size bed but it appears I could just put the ROHO topper on my side of the bed--under my aching ribs. Right?

Spinning the wheels,

Scoob

PS. Thanks to all who shared. All our sleeping issues seem unique but similar. I thought I'd hear more crazy positions, like E-Dog's. If I could sleep on my head I would because it is the hardest part of my body but my skull isn't flat on top--not yet. I believe I smoke a doobie--a scooby doobie-- and look around for a piece of ROHO about 4 foot by 4 foot so I can lay my upper body--and my HO'd Ribs-- on it.

PSS Anybody have any info on the effects of pressure on Heterotropic Ossification. Don't let this thread die yet. I sense there are more wired sleeping styles to be reported.

Hi Scoob,

I'm from UK so got mine a number of years ago from a specialist place. Back then a single section cost about £400 (UK pounds) but the filler panels are much less as they are basically bubble foam pads covered in waterproof material. You could make your own or even use pillows as end filler panels.

I did get a puncture in my shoulder section and woke up in a strange position... Its damn had getting up with half your mattress deflated!!! Since then, I've aquired a few more Roho sections which people didn't want; at £400 a time I snatched their hand off so I've now got some spare one.

Try Googling Roho as there'll be sold in the States.

Good Luck

[Jackiefff]

i sleep on my stomache all night long.. but i do wake up on my right side through out the night.

[qbounce]

I can't feel Scoob, but when I'm laying on my hip with HO, after a couple hours my leg starts to spasm. From pain?? I can't say because I can't feel it, but I'm sure my bodies telling me something. I do feel a kind of grinding in the joint when I bend down, so I'm SURE that if I could feel, it would be painful.

[cubanito_016]

I sleep on on my butt never got pressure sore I sleep how ever i feel like it

[Meadowlarkmark]

I sleep on my right sde, sometimes with pillow between legs, but generally not--I do wake frequently but usually get enough sleep ti get through my work day.

[Santa Cruz Soul Surfer (LRO)]

I tend to sleep on my stomach more than anything, I'll flip on my sides for a little while when I start to spasm, but eventually go back to my stomach. I have one of those huge down feather body pillows though which help things alot.

[Ches]

Dont you guys sleeping on your stomach ever worry about getting a dropped foot?

[Santa Cruz Soul Surfer (LRO)]

Yes actually...I have really bad drop foot problems, to the point where I have to wear AFO's during the day. The issue for me, is that I have almost all of my lumbar vertebrae fused. So I can't lay on my sides and sleep for long periods of time and if I lay on my back, I can feel my rods poking me in the stomach. It's a real catch 22 situation...But if wearing AFO's during the day means I can get a better nights sleep, then it's worth it to me.