One Year Out of Rehab

I’ve been out of residential rehab for a year this week and am so happy to be home, living my life as independently as I can (which is most things). I’ve learned how to adapt to things that seemed impossible when I first got home, and others may be time consuming but very doable. They seem like small things – taking a shower, changing the sheets, putting on AFO’s, making cookies – but each was a major challenge. But I live here independently with my floofy girls and do more than just worry about whether I can stand. I have two more weeks of PT working on my inflammed shoulder and then I’m on my own again. I’m so ready.

Walking:

For the last 2 weeks, I’ve been walking with a rollator in physical therapy. Right now it lives up in PT so I’m using my regular walker at home and to my surprise, I’m finding the rollator to be easier to use. When I tried using it a year ago before I was discharged from rehab, it was a disaster. My legs are much stronger now and my rollator is appropriately sized, so I feel stable. I also know how to use the brakes to keep the rollator from flying away from my feet. I’m easily walking about 150 feet using it which may not sound like much but it means I know I can handle it in the apartment with shorter distances and I feel confident about bringing it home to use on my own. If I need to, I can hire someone to walk with me for 30 min a day when I first start using it here.

Sleep:

My sleep has finally turned around. I’m making myself stay up longer in the evening, which seems to have eliminated my “get up in the middle of the night to pee” problem. I use my nifty flexible “bed ladder” attached to the bed frame to roll over so I can sleep on my side, which eases lower back pain. I usually find myself on my back by morning, but have figured out how to set the adjustable Sleep Number bed to be comfortable and supportive. And best of all, my CPAP problems were fixed by adjustments made by my DME provider so I’m getting plenty of air. After months of short nights mostly spent in the chair, I’m now getting 8 hours of sleep and have plenty of energy during the day.

Blood Clot:

Two ultrasounds in early July found a blood clot in my right thigh. It’s a chronic thrombus or DVT which means it’s been there a while and has hardened and attached itself to the femoral vein from above the knee almost to the groin. Yup, it’s big. They did the ultrasound in the first place because my leg and foot were swollen and super tight. The doctor explained that, because of the clot, the blood couldn’t get up the leg through the narrowed vein. What made it swollen wasn’t water retention, it was blood. They put me on blood thinners to dissolve the clot, though it could take 6 months for it to go away completely.

Three months later, things have improved. Two follow-up ultrasounds show the clot is still there, but my foot looks normal in the morning and only slightly swollen at the end of the day. Foot and leg are more swollen if I have to spend lots of time in the wheelchair with my legs down, but even then, the leg “gives” more than it did three months ago and feels more normal. I elevate my legs in my lift chair when I’m home and also raise up the lower part of the bed at night, which all helps. Elevating didn’t really do much before and I’m not sure how much it’s necessary now, but I’m happy to have more normal legs.

Hopefully the whole clot will be gone by the end of the year. I’m thinking I’ll probably need to stay on the blood thinner to be sure another clot doesn’t develop, but we’ll cross that bridge when we get there.

Image credit: Photo 155001899 / Progress © Designer491 | Dreamstime.com

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.

Counting Sheep Doesn’t Work

I’ve been waking up at ridiculous middle of the night hours after a few hours of sleep. Tonight, though, I’m still awake at 2am without ANY sleep. Yes, I take something prescription to help me sleep but tonight it’s not working. Neither did counting sheep. Okay, cats.

My right leg is spasming from knee to toes, clamping down in waves of pressure and tingling. This happened all the time right after my surgery but lately it hasn’t been around at all. I didn’t miss it and wonder what it means that it’s back. My lower back hurts, too, and my tummy hurts where I’ve been sticking myself with Lovenox.

On the other hand, I did figure out how I can roll over onto my left side, something I’ve been trying to do for almost a year.

… 5:25am. I got 3 hours of sleep and am now sitting with a big ice pack on my lower back. Never sure if it should be heat or ice, but at least I know it feels good. I have pain pills if needed. I’m also dealing with waves of nausea again, which I think are from the Lovenox. Planning to lay low today. Maybe take a nap if I can.

No Foolin’ Updates

Wheelchair: Medicare approved funding for my wheelchair, so they are FINALLY going to order the parts and get it assembled. Best estimate is another 4-6 weeks before it’s ready. I will be very, very glad to see it when it gets here.

Therapy: I had my evaluation for out-patient therapy on Monday with the same person who already evaluated me on Sept. 7th when I got to Meadow Lake and again 6 weeks later when I was discharged. He could really see the difference that the NuStep has made with my leg strength and was pleased with my walking and with increased sensation and range of motion. My hip flexors are super weak which is creating some problems, so we reviewed some bed/mat exercises that can help. I started back with actual therapy yesterday, getting e-stim and doing mat exercises. We’re going to do the stim first each session, since that’s something I can only get there. The other stuff I can do at home if we don’t have time to get it all done.

Sleep: I’m back to sleeping in the bed all night but I’m not sleeping well. There’s nerve burn pain from a pinched nerve on the outside of my left thigh that wakes me up when I’m in certain positions. When I shift to be on my right side, which isn’t easy to do but which does ease the nerve pain, then the right upper arm/shoulder hurt. And then we have Ellie who does kamikaze jumps from the floor onto my tummy for no reason except that she’s a cat. The good part is that I can and do nap in the chair when I need to, but I’d really like to get a solid night’s sleep soon.

Something to Do: I signed up to work with the FamilySearch 1950 Census Project to help review and verify/correct machine generated information for names and households for the just-released 1950 U.S. census. This is the first new census available for genealogical research in 10 years and a goldmine for researchers. For those who don’t know, individual census responses are held for 72 years after the census date. That should keep me and a lot of other people busy, and it’s something I can work on for short or long periods of time around other things like therapy and candy bingo. I have my priorities.

Image credit: Photo 178137333 / Updates © Nelosa | Dreamstime.com

Good Sleep? Not exactly

I’m running on fumes these days from lack of really good sleep. I have two apps on the phone, one for FitBit and one for SleepNumber, that give me reports on how much time I spend awake or in REM, light, or deep sleep. We need good amounts of REM sleep to really wake up without feeling as though we’ve been slugged, and that’s been sadly missing this last month or so.

Getting into bed is difficult, requiring coordination and the leg lifter to haul the legs up onto the bed. Sometimes it works; other times I end up crooked with one leg dangling off the edge while my head points in the other direction and I scramble to get back in position. Then I have to get the feet actually under the covers, which is a separate problem. Because my hip flexors don’t work right, I can’t scoot over in bed and am very close to the outside of the bed on my left side. With work, I can scramble to get on my right side, but that hurts my hip and shoulder after a while and I end up on my back again. My knees can bend but not usually when I want them to, especially in bed, and then there are spasms and waves of sensation from the big toe up to the knee that happen at random times.

Getting OUT of bed is also difficult, tho marginally less so than getting in. My right foot, especially, just sort of dangles out there and doesn’t provide much support when getting from the bed into the wheelchair. And when I wake up and think I need to pee, I don’t really have the luxury of snuggling back into the covers for another few minutes while I ponder if I really DO need to get up or just THINK I do because I woke up. I can’t take the chance because I don’t want any accidents, so I bring the bed level back to 100, raise the head of the bed so I can sit up, and find the leg lifter to get the legs out of the covers. Then I bring the wheelchair closer to the bed so I can “pivot, step, step, turn” and get in without needing to use the walker, too.

But after all of that, the idea of going BACK into bed has zero appeal. So I end up sleeping in the lift chair, covered with a fuzzy blanket and hoping I don’t slide out of the thing. I use the flashlight on my phone to light my way from bedroom to living room, trying to keep things as dim as possible so I can get back to sleep with minimal trouble. It doesn’t always work, but that’s the goal. On any given night, I can spend 2-6 hours in the chair after starting in the bed.

Deep sleep and REM sleep are what’s missing most of the time, or at least at low levels. Yes, I take something to help me sleep and have for almost 20 years, prescribed by my sleep doctors. I’m afraid to nap because I don’t want it to mess up my night sleep even more than it already is. I’m trying to see if doing the NuStep in the afternoon instead of (or in addition to) the morning will boost my metabolism so it thinks I was more active than I actually am most of the time.

So if I yawn when we talk, it’s not you – it’s me just kind of operating on fumes.