Not every day starts out with 9.5 hours of sleep, unfortunately. In fact, precious few do. And after days of sleeping long past 8 hours, I’m up early this morning with barely 7 hours under my belt. I was too warm, overnight, and I probably need to put the air conditioner back in the window, because when I get too warm, I can’t sleep.
Also, I was having bad dreams last night, having to do with my spouse. I was so angry with them about doing something wrong, and I was trying to get back at them and teach them a lesson, but when they tried to step up and do what I needed them to do, they couldn’t, because their mind was gone. It was mean-spirited and cruel, and it also brought home to me, yet again, just how much it sucks to have your beloved decline right before your very eyes.
So, no, I didn’t get enough sleep last night.
I got up anyway and started in on my day. I rode the exercise bike for 20 minutes, then I did some heavier lifting than I usually do. I didn’t do a ton of it, because I don’t want to injure myself. But I did lift heavier weights that took more concentration and effort than usual. And that felt pretty good. It felt good to push, even if it was just a slight bit more than usual.
I need to shake things up and break up my routine, so it doesn’t get boring and I don’t lose interest and motivation. I mean, having a “master routine” of doing the same activities each morning and evening (getting to bed at the same time, exercising and eating a nutritious breakfast in the morning, and keeping myself on a schedule). But doing the exact same thing(s) over and over can be mind-numbing, so I need to find other ways to work and stay active.
And that’s what I’m doing. I had my “magic potion” of electrolytes and fruit juice this morning. And I also mixed up a big batch of deviled eggs. I actually love them. And over the last holiday season, my sister-in-law showed me some secrets of making really tasty ones. So, I whipped up a batch and sealed them up in plastic containers for later (so the refrigerator doesn’t smell like egg sulphur). I used to watch Jacques Pepin on a food channel, and he showed how you can poke a hole in the end of an egg to let the sulphur release, so your eggs don’t have that rotten smell, but I could never get it to work. It just got egg all over the inside of the pan I was cooking them in.
Oh, well. The smell isn’t awful, and it doesn’t mean the eggs are bad, so I’ll live with it. At least I have my deviled eggs.
I’m tired today. And not just from not getting sleep. Yesterday was a very emotional day for me — much moreso than I expected. I had a neuro appointment, where they did an EMG on my legs to check for neuropathy. They wanted to check how the nerves in my legs and feet are behaving — if my balance issues might be related to degeneration in my nerves there, or if the impulses are not traveling properly from my spine to brain to legs to feet… and so on.
I had to lie still and relax completely, while they did little electric shocks on my legs, and then tested the nerves in the muscles with little needles that the doctor inserted into the muscle. It wasn’t terrible. I could do without the shocks. It reminded me a lot of when I was a kid running around at dairy farms, bumping into the electric fence. It was like that, but the place where they pressed the electric conductor against my skin was very sensitive. The doctor told me that if I relaxed and got my autonomic nervous system to calm down, I’d have less of a pain response.
I found it interesting that they talked about the ANS that way — and that they seemed to assume that I knew about it and understood what they were talking about. The thing that bothered me about it, was that they went really fast, and I felt like I couldn’t prepare or keep up or get my head around what they were saying, until they’d started. And that sense of no control was stressful. I mean, not necessarily control, but just not feeling like I was actually a part of the process — that they were just doing all this on my body as though I wasn’t even there — I didn’t care for that at all.
It took about 30 minutes to do the testing, and the needles weren’t bad at all. They said it would hurt a little bit, but it didn’t hurt very much at all. The anticipation was much worse. And the needles were actually less painful than the electric shocks. The shocks were the worst, really, now that I think about it. Having your legs jumping around, and feeling that burning roughness from the electric conductor… it was worse than I thought it would be.
I got through it in good spirits, had a pleasant chat with the receptionists, and then headed back to the office where I could just get some work done. It really wasn’t that big of a deal. But then when I was going to sleep, I suddenly burst into tears and wept like a small child. I guess it did bother me — a lot. And the thing that got to me the most was that I was all alone in the process. I’ve stopped discussing the neuro appointments with my spouse — I don’t even tell them that I’m going — because it sets off their anxiety so intensely, to think there might be something “wrong” with me. And then my life gets even more complicated, because they shut down in their anxiety, and they just “drop out” of live, leaving me even more alone — and burdened — than before. So, I stopped telling my spouse about my appointments.
After all, there could be nothing at all wrong with me. Maybe I’m just a very sensitive individual who has a unique combination of traits that make me dizzy at unexpected moments. Who knows? So, why worry my spouse, if that’s the case?
But not having anyone to talk to afterwards, not having anyone to debrief and decompress with… that’s tough. And I really felt it last night.
These times when I have to push through an unpleasant experience is a little like lifting heavier weights on occasion. It forces me to pay attention. It makes me feel vulnerable and out of my element. And it reminds me of how much farther I have to go, to really feel as though my life is on solid footing.
It also makes me more sensitive to the situations of others who are even worse off than I am, who are struggling with serious health issues in the face of a medical system that doesn’t serve them, but only confuses and alienates them… and then blames them for not taking proper care of themselves. That’s especially true for folks with cognitive issues. I had a really hard time, inside the silence of my own skull, keeping up with what was going on around me. So, I just went along with it. But if the doctor had made a bad choice or wanted to do something more serious to me, would I have had the wherewithal to stop them? To question them? To defend myself?
Maybe I could have. Or maybe not. I just don’t know. But I do know that for many, many others, they can’t. They just can’t. They’re at the mercy of the medical system, unable to follow along, unable to figure out what the doctor is saying in the 15 (whopping) minutes they have to spend with them.
And that can be deadly. We can’t speak up for ourselves, we can’t advocate for ourselves. We just end up being guinea pigs, and that’s such a bothersome situation, it alone keeps me up at night, sometimes. I wish to high heaven there were something I could do to change this, but all I can do is offer my own experiences, and hope that somewhere, somehow, someone reads these words and gets something from them.
I’m feeling a little better this morning, but my dream bothers me. It all bothers me. But it’s a new day, a beautiful day, and life is waiting. I’ve got a whole bunch of deviled eggs in the fridge, and that’s pretty cool. Life is good. Regardless.