The Shoulds

I keep thinking about things I ‘should’ do.

I ‘should’ eat better, I ‘should’ clean more, I ‘should’ exercise more/at all, I ‘should’ read more academic things, I ‘should’ be prepping for academic things, I ‘should’ write, I ‘should’ volunteer, I ‘should’ be in the streets, I ‘should’ do what my colleagues do, I ‘should’ call home, I ‘should’ go outside, I ‘should’ do this, that, the other.

And…yes. I mean, I ‘should’ do at least some of those things, for health. For safety.

But all I think about is what I should do and what my loved ones need and want. And when I fail to do those things or live up to my shoulds, I deprive myself–of things like sunlight and friendship and pleasure.

I decide I don’t deserve to go to that free pleasure event, because I haven’t done enough in my community–regardless of my energy level, regardless of my physical ability, regardless of anything that’s been happening in my personal life.

I decide I don’t deserve sunshine because I haven’t been able to get out of bed for days and weeks at a time.

I decide I don’t deserve a massage to help my aching body feel better because I haven’t lived up to the societal standards of feminine hygiene like shaving–even though shaving makes me ache so badly. And I decide I can’t get a wax even though I actually like the feeling of my legs being hairless because I just don’t deserve it. I haven’t done enough. I’m too much bad, not enough good.

I talk to myself like that all the time.

But I would totally tell my wife to do whatever she needs and wants to feel good about herself. I would say the same to my male partners.

What is it I want? And why is it so hard to figure that out *and* act on it? Why do I feel like I’m not good enough to do what I want?

My therapist tells me I only need to do what I want in this life. I keep looking at her like I don’t believe her. I think, to me, part of my personal definition of being a good person is doing good works. And if I’m not doing good works, I’m not being a good person. So then it makes it hard for me to feel like I ‘get’ to do things that are purely pleasurable for me.

But if I never let myself feel pleasure, how do I get out of misery?

Also, it’s hard to consistently do the good things I want to do, and I hate being inconsistent. It’s hard for me, I mean. Not knowing when my body will shut down on me makes it difficult.

Other people manage, and I tell myself that. I just…I’m not supposed to compare, and I haven’t figured out how I’m supposed to manage.

It’s particularly difficult when I’ve spent a lifetime being told–first by actual, physical people who were supposed to take care of me (my parents) that all my physical and mental ails were trivial/not real (from illness to broken limbs, not a thing was believed until hours/days had passed and I finally got them to take me to a doctor). Now, it’s hard for me to believe that about myself. I keep telling myself it’s not that bad, that I don’t have it as bad as other people, that I need to just pull myself up and get on with it, that I’m horrible for not just getting on with life, that all of this is just me being hysterical and manipulative and melodramatic (and hey, those are words from my past). It’s hard for me to take care of my body.

One of my partners is a sweet caretaker, but he’s the sort that wants to do for me. And he’s been so so helpful, but he’s not great at telling me to make an appointment. Not yet. I think he’ll get there. But I have to learn to do it on my own, because it really shouldn’t be on him, or on anyone else. I just…never learned how to do it, never learned how to value my body.

And that gives me this really really bad case of the shoulds all the time. I ‘should’ do all these things, but a lot of the time I can’t, because I actually physically can’t. Or I mentally can’t. And I need to be easier on myself about that.

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Adventures in Sleep and Grief

About a year ago, I finally had a much-needed sleep study done. It was an at-home sleep study, to the surprise of everyone involved (myself, my doctor, my partners, my therapist). Maybe my insurance provider wasn’t surprised? Anyway, shortly after the test, my doctor’s office had to cancel my results appointment because they had a computer training class that day. I said I would reschedule.

And then I didn’t.

Some of that was depression. Some of that was brain fog and fatigue. Some of it was life and being bad at adulting. Some of it was exhaustion.

Finally, around March–my grandma had been doing okay-ish. I knew she was up and down, health-wise. I’d been up and down, too, depression-wise. I’d been through some suicidal ideation, broken through due to getting angry at my parents, and come back to it. I kept kind of…waiting on The Call that something was Going Worse with my grandma. But it hadn’t come, and so in March, I decided to finally make that doctor’s appointment again.

I went, and I found out that I have sleep apnea (to probably no one’s surprise who has ever heard me snore). My oxygen saturation level was dropping to 66% at night (hence my constant brain fogginess) and I was stopping breathing up to 15 times per hour. That’s…no wonder I stopped having my super-vivid dreams, and no wonder I have felt so tired all the time, and no wonder a lot of things, right?

So my doctor said I needed to go for another sleep evaluation, to get fitted for a cpap, in-clinic. So we scheduled that.

And then my grandma fell and cracked her head open on her bathroom floor.

My dad was there, thankfully. He got her to the hospital, but he had to clean all that up alone. I don’t know how he did it. I don’t know if I would’ve had the strength.

Grandma’s health deteriorated pretty rapidly from there. It felt slow. But…that was March, and by the beginning of July, she was gone.

In between, I had my evaluation. That went okay. It was weird, to have the paste in my hair and to try to sleep in the clinic. I don’t sleep well in strange settings at the best of times. Being nervous about people watching me sleep, and having things attached to me…plus the fact that I somehow dislocated and relocated my shoulder while settling in for the night and so was in a lot of pain (only me!) meant I felt like I didn’t sleep much.

The lady who worked with me–a nurse? attendant? clinician?–seemed to think I’d feel so much better! when I woke up, that I’d feel an immediate difference. I don’t think I slept as much as she thought I did. I *did* feel some difference through the day, but I was still exhausted at night.

I was told I’d have my cpap within a couple of days.

A month later, I still didn’t have it, and I was having to yell at my doctor’s office that I didn’t have it. They’d wanted to schedule me for a ‘review of how I’m doing’ on it, and, well, it’s hard to do that without actually being on it.

I didn’t actually get it until about a month ago now, in August.

I missed some time with Grandma because of that, because for a little bit they kept calling me each week to say “It’s on its way” or “We don’t have the information from your doctor,” and my doctor kept insisting they had sent the information.

Then I missed some time with Grandma because we found out my wife has a very small, benign brain tumor on her pituitary gland.

The last time I saw Grandma, she clutched my hand…she knew, and I knew, and we both knew that we both knew it was the last time.

It’s been two months, and I miss her so much.

And I can actually feel that. And sit in it. And think about it. And remember things. Because this cpap…being able to breathe at night means my brain functions during the day.

I wish I’d been able to do that while she was still here.

Though for the first few weeks, this thing was a terror. I’d been told it would aid my depression, my anxiety, make things so much better. Instead, I got vivid nightmares from which I couldn’t wake myself; during the day, my brain busied itself remembering and reliving all the worst parts of my life. I felt haunted.

That has somewhat eased now, although I still have occasional nightmares and very very vivid dreams. I started playing my way through all the Escape The Room games I could find on my phone to occupy my brain with something other than Bad Thoughts.

I hid in bed for…it feels like a long time. It’s been a couple of weeks, I guess. I’m not in it now, but it has felt like a long time.

My brain is working now. That’s something. My sleep schedule is…weird. I think I need to start recording it again. I keep falling asleep anywhere from 7p-11p (if I can keep myself awake that long–it’s seriously a challenge) and waking around 1a-5a. Sometimes I wake a little later, but not usually. I get tired pretty easily through the day, and sometimes have a 2-hour nap. One hour doesn’t seem to suffice.

I have discovered that I really cannot go without the cpap. Sleeping, even for 10 minutes, without it leaves me feeling like I’ve been choked and like my head is full of cotton. Is that how I felt all the time a month ago? It’s so hard not to doze off somewhere sometimes–I want to be able to drift into a pleasant nap on the couch like I used to do occasionally–but I know that if I do, I’ll wake in that strangled state.

It’s nice to be able to think. I’m still tired, though. Something else is definitely ‘wrong’ with my body, something other than the sleep apnea. My brain is sharper, and I’m waking naturally and sleeping naturally, so I think that is ‘fixed’ as it can be for now. So…I need to figure out what the rest is.

Anyway, I can sleep. I can breathe while doing it. I can grieve. I am struggling still with depression and anxiety, so the cpap hasn’t fixed that, but maybe it’s helping? I actually pulled myself out of bed for a walk today. And I have been fixing some of my own food. Maybe I will regain some of my independence. Maybe I can find my way to a new healthy.