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.

I Need a New Sleep Study

Sleeping isn’t what it used to be and I’m afraid that I need to have a sleep study redone to see if my CPAP machine needs to be adjusted. I’ve had two sleep studies, both while living in Boston, but repeating the experience isn’t high on my happiness list.

The rules of thumb for having a new sleep study are:

• return of symptoms (snoring, apneas, daytime sleepiness, lack of energy, etc.)
• gain of 30 lbs or more
• loss of 30 lbs or more

Unfortunately I can report that I’ve definitely gained more than 30 lbs since my last study and those symptoms are definitely back. Well, I don’t know that I’m snoring since I sleep with my mask and CPAP machine every night – and there’s no one here to hear me except the kitty and she’s not talking. And I can’t count my apneas because that’s not something you can tell yourself. My machine does have a little computer and collects that information so I’ve requested a computer smart card that will read it and report the results back to the doctor.

I do know that I’m having a lot of trouble waking up in the morning and my energy level is low. I’ve also noticed that I wake up quite a lot at night even with the CPAP, which didn’t used to happen. When I first got the machine and was able to wear the mask all night without ripping it off (which took some time), I woke up every day ready to hit the road and had energy to burn.

The test doesn’t hurt but it’s awkward and disruptive. The sleep technicians spend an hour hooking you up with dozens of wires and leads stuck all over from your scalp, face, chest, back, and legs. Then they tell you to “sleep normally” which is not easy to do when you tangle yourself up in wires when you move.

My last study was skewed because the sleep center forgot to tell me to stop using my CPAP and taking my sleeping meds for 7-10 days before the study. I can get by for a day or two without the CPAP, though my sleep is splintered. But more days and without my meds — I can’t imagine how I’m going to do this. Because I didn’t the last time, though, the results weren’t quite accurate, although the test wasn’t redone.

I have a physical scheduled in 10 days and will tell my doctor then that I think a new study is needed. Yale has a Center for Sleep Medicine with three different sleep clinics but it can sometimes take time to get scheduled for a study even after they decide you need one. It will be even longer if I have to meet with a sleep doctor first. I’m getting sick of the doctors and I haven’t even seen one yet!

Image featured on the CPAPUsers Yahoo Group page.  If you have sleep apnea, I definitely recommend joining for support and ideas.

Sleep Deprived in Connecticut

It took me over an hour to fall asleep last night, which is unusual these days since I have my meds and my CPAP. Tossing and turning and getting warmer in my cozy flannel sheets with a cat anchoring the bottom spot. I got tangled up in the CPAP hose and almost strangled myself, which didn’t make sleeping any better. Then at 3am my left foot clenched in a hard cramp right around the arch. And again. And again.

That was the end of sleeping. I kept hoping that I could work out the cramp with massage or by stretching the foot or walking around – which of course Tessie thought was all about giving her breakfast at 4am. Uh, no. We did have some tummy time in the dark quiet of the wee hours but my left foot was moving all the time.

This was not a good way to start a work week but I think I was productive, though not necessarily with the things on my “to do” list, since problems come when they come. I’m working with one of the IT folks to create a cancellations database to use to provide better number crunching and tracking on what seems to be my biggest project. But there were new editions and problems from other staff to be looked at before I basically am unavailable at noon tomorrow (meetings all afternoon, then a retreat on Wed., then leaving on Thurs.).

My usual WW meeting is Wednesday night but I don’t think I’m going to be able to make it, though maybe if the retreat is cut short I can. Depending on the logistics of a bus to get to the car, plus adding rain — blech. Besides, I’m going to need to come home and pack and try to crash early so I can wake up at the ridiculous time to leave for the airport. So I’m going to try and get to a WW meeting tomorrow, which is scheduled later than the one I usually get to. I know it will be insanely crowded and hope that I’ve stayed the same.

No matter what, though, I’m going to a meeting because that’s what I do. No putting it off because I am afraid of the scale or have too many other things to do. This is why there are lots of meetings on different days at different times. If your regular one doesn’t work, find another. Once you’ve weighed, find yet another if you need the pep talk and help getting back on track.

Time for bed. Wish me luck.

Mixed Bag Weekend

I love being able to sleep until I wake up on weekends. Getting up at 5:50am on work days is hard for one who is totally not a morning person and even though I try to get to bed at a decent hour, I’m usually somewhat sleep deprived by Saturday. Now that I changed to a Wed. WW meeting instead of on Sat., I’ve got more time to wake up slowly and then piddle around doing stuff.

The original plans for the weekend were to head to the Durham Fair but I ended up not going. Much as I loved the idea of seeing farm animals, crafts, and riding the ferris wheel, I was a little worried about the amount of standing and walking involved. Not to mention the stations of fried dough. I don’t even like it but it’s awfully tempting to eat weird fatty stuff just because it’s around.

So instead of the fair, I attempted to put up curtain rods. Ha ha ha. It was quite an adventure that took me two days and two trips to Home Depot. There were three rods all for double windows, for a total of 9 supports and 18 anchored screws. There was the problem – I ended up mangling some of the anchors and/or pulling some out of the wall, leaving big holes that required spackling. Thank heavens they’re all up now and they do look pretty stylish if I do say so myself.

The curtains are another matter. Last weekend I went to the Country Curtains store to pick out curtains, knowing that being able to see and touch them make it a lot easier to do than just using a printed catalog or website. I ended up with insulated weaver’s cloth tabbed curtains in a natural shade, made for really wide windows for “proper draping”. Unfortunately, once they were up on my bedroom wall, I knew they were not going to work. Too blah and too much fabric.

So today I was on the road again, entertained by Prairie Home Companion as I drove back to the store. I exchanged the boring curtains for different kinds for the two rooms, a lovely soft rose microsuede for my bedroom (goes nicely with my quilt) and a soft burnished gold patterned velvet lined curtains for my study. I was struck on the way home by how lovely the ride was – more trees were sporting reds and golds than even last week and I can tell we’re into fall.

Cleaning up the mess I’d made with the curtain rod installations led to full-scale house cleaning, including mopping the kitchen floor, which I despise doing. I’m still sneezing from the dust I released but things do look a lot better.

The cleaning also gave me a physical release for the emotions that were bubbling inside. I learned today that a friend died on Saturday morning. Bob had been recovering from complications related to knee surgery when he went into cardiac arrest and died. Just like that, he’s gone.

ob was a giant in my field and had been looking forward to retiring in a few years after a satisfying career that took him from local to national and international activities. He was an extremely wise, intelligent man with great compassion, a lively sense of humor, and keen insight. He was also a good friend to many of us, including me, and news of his death is already filling the ether with shock and grief.

“Rest eternal grant to him, O Lord. And let light perpetual shine upon him.”

Day of doing nothing

I did practically nothing today and it was wonderful. Saturday is the only day I can sleep in and often not get on my usual hamster wheel of activity. Sunday is out because I go to a WW meeting first thing in the morning, which means having to be presentable and getting myself there instead of snuggling into the flannel sheets and just dozing.

Today I slept until I woke up at about 8am, giving me about 9 hours of sleep. Since on an average night I only get 6 1/2 hours and on days like today I get way more, clearly I should be listening to my body and going to bed earlier during the rest of the week. I managed to hop right into the shower, something I always do on work days but sometimes like to dawdle about on weekends – that’s where I wake up.

Breakfast was Kashi Vive cereal with FF milk and a banana. I piddled around in the morning watching several “Clean Sweep” episodes and rereading an old favorite book that I found while I was decluttering a bit. Isn’t it amazing how some books you can read over and over even though you know all the characters and plot turns? I just lounged in the recliner with a bottle of water and the book with sunshine spilling in the windows – and nothing I had to do.

Lunch was a Lean Cuisine meal because I couldn’t handle the idea of another salad. And it was enough. And I finally got my act together to get dressed (yes, I was a lazy bum this morning) and off to the grocery store with my scribbled list.

I really sort of like the grocery store, especially when I have a list so I’m not just guessing what I want and then getting home to discover I’m missing a key ingredient for a new recipe. I’m trying two of them this week and needed to get my stuff. Since I have been very undisciplined about the gym, I walked up and down all the aisles twice to get some exercise – and partly because I had senior moments about where the things were that I was looking for.

One part of this trip was a quest to find the new Fiber One Chewy Bars that everyone is raving about. People in my WW meeting have talked about them and Hungry Girl just sent out a rave review this week. She even said the Oats & Chocolate one was better than Snickers! That was hard to believe since, seriously, nothing is better. But you know what? When I had one, I understood. It was chewy and rich tasting and very satisfying and I heartily recommend them. And they are only 2 points each!

I also got lots of veggies, yogurt, tomatoes, potato rolls (yum), some frozen pizzas, fizzy water, and a bunch of different things that should carry me through the next week.  I’m also cleaning out my freezer so I have plenty of protein on hand to work with.  But tomorrow’s dinner is a new (for me) recipe for making rotisserie chicken in the crockpot.  With potatoes.  I’ll try it out and if it works well, I’ll post the recipe tomorrow.

But the rest of the day was also quiet and non-productive but nonetheless restorative.  Sometimes we have to just let the mind and body lay fallow for a day or two to be quiet and heal.  I just know that tomorrow I will have more energy for not having done much today.  There are some major things on the list to do, some of them postponed from today, but I’m not worried.  They’ll get done.

It was a good day.