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Post by Deleted on Jul 7, 2016 17:53:17 GMT -5
This is one I've been pondering over lately... For those of you who have PCA's who get you into bed and then out again in the morning - what do you do inbetween times? If for instance - you need a drink, you have an itch or a pain, you need to turn over, your covers slip off etc., etc., I'm sure you can think of a million other things that drive you to distraction during the night too. If you need help with these things, does your PCA generally live in, do you have a call button or something to contact them with? How do you get hold of someone if you need them? Also, how do you avoid feeling 'trapped' in your own body when you are out of your wheelchair? I would be inclined to panic knowing I couldn't move, even if I wanted to, but that's just my mindset. Have you got coping strategies for dealing with the mental side of things as well as the physical? A lot of questions there. Don't feel like you have to answer them all! Yours, Nosy as ever, Inky xx I sleep with my phone next to me and a CamelBack water thing near me if I need a drink. My coping strategy is sleep.  I do hate being in bed too long, though. I go to bed for two things. |
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Post by Pony on Jul 7, 2016 18:42:54 GMT -5
You really ask some good questions, Inky. Maybe you should've been 60 minutes reporter? First of all i don't like the bed very much...really hate not being mobile, and i get uncomfortable a lot, even shoulders get to hurting. I try to make it as painless mentally as possible by having a big screen tv in front of me and my Kindle tablet on an over-the-bed table, which holds my remote for thermostat, TV, lights and ceiling fan. I also have my muscle relaxers and bottle of water. If i go without muscle relaxants, i become crazyyyy spastic. Of course my cell phone is there, too. So, if i need someone, i will call my roommate, but it's very rare. I have insomnia frequently, so i wake up and fuck around for hours in the middle of night. Like i said, i HATE the bed, and especially waiting for aide to get here. My roommate is up n down all night and has been cooking us breakfast around 6 a.m. lately. lol Crazy fuckin life! |
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Post by strawberrybubblegum on Jul 7, 2016 18:50:59 GMT -5
Ok, so I know this was a question for the guys, but I also have something to contribute on the topic and it's not the first time I reply to a topic directed to the guys, so meh.
My boyfriend has this thingy to turn the TV on and off and call the PCAs. It's controlled by sip n puff. When I'm there, he doesn't use it during the night, though (only sometimes when I ask him to because I'm going to want to sleep in the next morning and otherwise he'd have to wake me up to turn the TV on).
The one thing that happens probably every night, especially the ones he's not getting any sleep, is him asking me to accommodate his blanket. Yeah, this blanket thing is probably the most frustrating task I need to do because a) I'm sleeping, b) I'm tired and/or c) I'm so deep asleep that I barely even move the blanket to the point where he needs to ask me several times and more harshly, which, in retrospect, is always hilarious, but I get it that it's also frustrating for him because he's either super cold or super hot. Plus, he only asks me to do it when he can't actually take it anymore, so he doesn't have to wake me up ALL the time. But, to be fair, I don't think he calls the PCAs all the time to do it when I'm not there, either.
Anyway... (Went a bit off topic there... Ahem. Sorry.) He also always has an appointment in the night to turn sides, so there's always a PCA coming over in the middle of the night, literally.
These are probably the two things I personally struggle with the most, since sleeping is probably one of my favorite things to do (no kidding). I'm sorry, I'm probably totally off topic again. I'll stop being a whiny bitch now.
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Post by Deleted on Jul 7, 2016 19:02:12 GMT -5
Sorry to hijack but now I have a question. How many of you guys have a hospital beds?
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Post by Pony on Jul 7, 2016 19:52:48 GMT -5
Oh yah, i sit up in the electric-bed most of time, but lay it down to ease pressure off my ass...
Strawberry, your post is valid...interesting! That would drive me crazy, too. He must be pretty high-quad coz I can handle the blanket, but all of our temperature gauges are off some.
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Post by darthoso on Jul 8, 2016 0:49:00 GMT -5
I'm extremely curious what the other SMAers have to say. I've got a night PCA who works midnight to 7am, mainly because I have a hard time getting comfortable and will roll at least 4 times a night. When I don't have a PCA I tend to meed less help because I don't want to be annoying.
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Post by matisse on Jul 8, 2016 1:15:15 GMT -5
The worst I usually deal with is being used as leverage- he'll just grab whatever body part is closest (usually my forearm) and yanks on me to help him roll over. OR pushes me over further cuz I'm "always in the way." This is funny, but how does it not piss you off? On the OP, I am now at the point where I don't like not having access to someone on short notice. When I am at home it's no issue. When I travel for work, I now bring someone along and I will call if I have any issues. Vegas I am alone overnight, but I can just call the hotel and since it's a party destination, they can get someone up quickly. When I am not at home, I have at least two phones near me when I am sleeping. As a general matter I need my space. If we had a small bed neither of us would ever get good sleep and the lack of sleep makes me cranky. So family vacations are a bit of a challenge because the beds are almost always smaller. |
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Post by strawberrybubblegum on Jul 8, 2016 2:46:18 GMT -5
Oh yah, i sit up in the electric-bed most of time, but lay it down to ease pressure off my ass... Strawberry, your post is valid...interesting! That would drive me crazy, too. He must be pretty high-quad coz I can handle the blanket, but all of our temperature gauges are off some. Thanks Pony! Yeah he's a C4 complete. And he has really bad body temperature issues. Either too hot or too cold, 98% of the time. |
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Post by Maurine on Jul 8, 2016 3:15:24 GMT -5
My boyfriend always has a bottle of water and two phones within his reach when he's in bed. He normally doesn't need the phone except for calling me to say goodnight.
He usually lies on his back all night. Although I also prefer to lie on my back, sometimes I turn on my side, so I asked him if it wasn't uncomfortable to stay in one position for so long. He said it is uncomfortable sometimes, but he got used to it. He has turned on his side a few times when he was feeling particularly uncomfortable, but he doesn't always manage to do so properly, since he can just turn his upper body, while his legs don't play along.
I don't think he feels trapped. After sitting for so long, he enjoys finally lying down.
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Post by strawberrybubblegum on Jul 8, 2016 8:19:25 GMT -5
I love it. Except when I don't. I felt like I never was able to sleep through the night, We've compromised on the big issues. But I definitely sleep more soundly when I sleep alone. Still, I prefer not to. Yes, yes and yes!  |
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Post by Pony on Jul 8, 2016 12:06:46 GMT -5
Back to 'temps'....yah, I handle heat better than cold, but heat can kill me, too. It's summer, and it's been Africa-hot lately. Surprisingly, I like it...the less clothes, the better, but without being able to sweat i'm like a pressure-cooker. If i'm out for a few hours, especially in sun, omg it takes all my energy. I start to pant, like a dog. The only cure is to get home, flip on my window a/c full blast right in my face for 30 mins.
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Post by Tek on Jul 8, 2016 12:48:33 GMT -5
Yeah, if I share a bed I sometimes need an arm or a shoulder to grab onto to position properly.
If I'm alone I just use both sides of the bed and roll around like a king.
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Post by matisse on Jul 8, 2016 14:20:07 GMT -5
On the OP, I am now at the point where I don't like not having access to someone on short notice. When I am at home it's no issue. When I travel for work, I now bring someone along and I will call if I have any issues. Vegas I am alone overnight, but I can just call the hotel and since it's a party destination, they can get someone up quickly. When I am not at home, I have at least two phones near me when I am sleeping. What kind of help would you ask the hotel staff for overnight? It has mostly related to turning over. I start out facing toward the middle of the bed, but eventually I have to turn all the way around to face the night stand. Sometimes I'll get a little stuck. Once I recall it was just a foot, it somehow got tangled in the covers. The security guys were confused for a bit because its hard to believe that what I needed required so little strength for them. |
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Post by Mets on Jul 8, 2016 14:49:49 GMT -5
I have an overnight PCA and if they cancel I'll have either my mom or another family member sleeping close by so they could hear me if I needed anything.
I usually turn every 2 hours or so, otherwise I get pretty sore/uncomfortable. It's not something I've ever really tried to change, but if I slept on my back I may be able to get away with not needing someone for 4+ hours. If I was in a relationship, I'd probably start considering different options, as I know it's a pain for whoever to have to wake up a few times to adjust me, especially if it's many consecutive nights.
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Post by Deleted on Jul 8, 2016 16:34:04 GMT -5
So for those of you for whom conscious turning over (either by yourself, with effort, or by another) means that you wake up X number of times in a night, every night...how do you deal with the disrupted sleep? Do you have a nap in the day? Go to bed earlier? Stay in bed later? What?!! The ex b/f was bad enough - flapping around all night, semi-whimpering in his sleep, putting his phone light on to go searching under the covers for his legs (okay, that one was as devvy as fuck) and he was only a low para who swallowed 7mg of strong sleeping pill every night. I was exhausted sleeping next to him. Or trying to sleep next to him. He ended up diagonally across the bed every night. How?! You're paralysed man! How can you end up hogging the whole bed? You're not supposed to be able to move!! I'm not a very good quad. I sleep in a regular bed on my back (preferably with a head resting on my chest), I don't roll over, no one coming into my room in the middle of the night and I wake up in the same position I fell asleep in. I do wear a cpap, though. |
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I do hate being in bed too long, though. I go to bed for two things. 
