Sleep – what’s that?

I’ve done most of my sleeping lately in my lift chair. It’s reasonably comfortable but the legs don’t go up as high as I need them to elevate given my edema and blood clot. My adjustable Sleep Number bed is comfortable but not when I’m flat on my back, and it’s not so easy getting up to pee multiple times a night. Because I’m now on Xarelto, that’s happening about every 2-3 hours.

Let’s talk about what that involves. I can’t go to the bathroom with the walker unless I have my AFO braces and shoes on, which just ain’t gonna happen in the middle of the night. So I keep the wheelchair by the bed. First I park the chair, stand, and grab the walker by the bed to help me with balance as I pivot and turn to sit on the side of the bed. Then I position a therapy pad between my feet and put them on top to help me push back in the bed so I’m not teetering on the edge. I use my leg lifter to swing each leg up one at a time, then pull the covers over me. And then I grab the bed ladder and use it to pull myself over a bit more in the bed. Last, I use the bed controls to raise the feet up as high as they go and the head up a little bit, and use the app on my phone to adjust the bed pressure level. Then the lights go out.

I’m afraid of NOT responding when my body says “Hello! Time to go pee!” I have to reverse all of the above steps, and use the flashlight app on my phone so I can see what I’m doing without waking myself up completely. When I use the bedside light or overhead light, it might as well be morning. Plus the cats hear me moving and come to investigate, which doesn’t exactly help. If I don’t adjust the bed back to 100, it’s like sitting in a hole when I try to go back and swing my legs up. So yes, it takes all those steps – which I have to do all over again to get back into bed.

So most nights lately I start in bed, then move to the lift chair after I get up to pee the first time, because it’s easier to get up from the chair than the bed. But without the legs being high enough or my CPAP available, I sleep lightly if at all, leaving me dozing in the chair during the day and really, really tired.

On the other hand, it’s still so much better than a year ago when it took two people to get me from the bed to the bedside commode, after using the call button and then waiting for the CNA to find a second person to help. I had to wear the hated gripper socks; now I can be barefoot which saves time and steps. I wasn’t strong enough to get my legs on and off the bed without help, and I couldn’t clean myself after because of back surgery limits on twisting and turning. Plus I was very uncoordinated navigating all this newness, full of fear that this would all be permanent.

But it wasn’t. Time and practice and therapy made the difference. It’s good to remember where I was a year ago, to see the difference and to see how “normal” my life actually is even with my limits. And as annoying it is to still have to do all those steps to get in and out of bed, I can do it and do it myself in my own home. I sleep better in the bed and it’s worth the effort to get myself there.

Random Friday Thoughts

My care plan meeting is scheduled for Monday at 1:30pm. It’s billed as my “admission care plan conference” which is taking place at the end of my third week instead of within the first 14 days that is supposed to be the policy, if I understood the MDS Coordinator correctly. We’ll see. “We will discuss your plans for discharge and after, the current goals set towards preparing for discharge, and address any questions or concerns that you may have.” Sounds a lot like prepping for discharge, doesn’t it? I’m guessing they’ll give me until October 15th or earlier. Will let you know how that pans out.

Yesterday and today I walked 175 feet from my room to therapy without a rest break in the middle. I’m doing more exercises involving bending. My OT tells me that by the end of next week I’ll be standing on my own without holding on to anything. That terrifies me because it’s how I fell that last time. But I’ll try because normal people can stand up without holding on to a walker with a death grip.

My AFO velcro problem has been resolved thanks to Gorilla Glue. I’m going to work on the other AFO tonight, since I think it’s also a bit wonky and I have lots of Gorilla Glue. I have a feeling I’ll need it in the future.

Have I mentioned that our meals come to us in styrofoam containers? We sometimes get little covered bowls for things like fruit or salad or dessert. We get a print out every week of the menu options for the following week so we can make our choices (tilapia or sausage, etc.). I’ve written NO EGGS and NO OATMEAL for every morning, adding FRUIT & YOGURT. Most of the time I get the eggs and oatmeal, no matter what. And tonight I got the morning fruit with dinner. I don’t really understand how this all works but am glad I’m not in charge of figuring out all the different diets and textures, since so many patients can’t chew well or need diabetic or low-sodium diets. In any case, my food is a far cry from what I eat when I get to really choose – not enough protein and pitifully low in fiber. I have a small supply of protein bars along with mini bottles of Diet Coke. They keep pushing juice and sweet tea but I get as much water as I can.

I’m going to need an adjustable bed when I get home. I need to have the head raised up a LOT to manage getting the legs on and off the bed, because I can’t really see or reach them if I’m flat. And with my feet down in the chair for so much of the day, they’ve turned into little water balloons and need to be elevated. Just not sure how I can manage with my existing bed. But I’ve never bought a bed without testing it out first, so this is new territory. On the other hand, I got a check from Emerald Bay for half of the initiation fee because I sold my house to new people, and I can use that money to splurge on something that I really need but isn’t in the budget.

It’s Friday and I’m tired. Thanks for reading.