I am exhausted.
It’s 2 a.m., so that’s maybe not a surprise?
But also, I’ve been sleeping a lot. I don’t know if this is still shingles-related, or depression-related, or just my-body-hurts-related. It’s hard to tell. I’m still on the retroviral, at a lowered dose, to fight off PHN. Every time my eyelid swells or I see a bump above my eye or my right side of my head itches, I get a little tense and worried that it’s coming back. I don’t know if it’s possible? That soon, anyway? I know that it is possible for people to get shingles 2-3x, though rare, but also people aren’t supposed to get shingles until they’re over 60…and I’m 35. So.
I meant to write about what my days are like, because I keep beating myself up for not doing enough. And also, I’m not really sure that I’m actually able to do much. At least, I don’t think I’m able to do much consistently.
So, most days, I wake up around 9:30 a.m. for my morning pills. On a *really* good day, I’m awake before then. On a *good* day, I’m awake with little to no struggle at 9:30, and one of my partners has made me either a small bowl of cereal or some scrambled eggs and apple juice, and I have little to no morning nausea and little to no pain. Sometimes I make breakfast myself, and these are really good days, too.
I eat and take my morning pills. I stretch and try to move out of bed for at least half an hour–to the bathroom, to the kitchen, to the living room or study or just another room, period. Sometimes I make it, sometimes I don’t.
On a *neutral* day, I struggle to wake up. Sometimes someone has made me breakfast, sometimes I ask someone, sometimes I make it myself. This makes the day a little better. I still do the checks for pain and nausea, and usually if I’m struggling awake, these are a little worse. I’m more likely to have more pain, though sometimes nausea just likes to show up. And I still try to move around after I eat and take my pills.
On a *bad* day, I struggle to wake up, and sometimes I don’t manage to wake up until 10 or 10:30 a.m. I usually try to call for someone to help me in this case, and usually, I have a lot of pain and/or nausea. If there’s no one to help me, I slowly make it to the kitchen for food and water, and I usually don’t get my pills in me until about 11:30 a.m. And I usually stay in bed, because the pain is really difficult to manage, and/or there’s dizziness associated with moving around, and/or I’m super-tired as well–whether I got enough sleep or not.
((Note: this is already exhausting to write about, because there are so many different types of day to write about, and I’ve only written about the morning, and I don’t do a lot with my days.))
After breakfast, on the really good/good days, if I have a plan to go out, I will do so. It will take me a little bit to get ready, because I still move slowly, but I will make it anyway. It’s a lot easier now than it used to be, because I’m living on the ground floor. Before, just the idea of the stairs–both up and down–was so daunting that it would exhausting me a little to think of them. But now I can go in and out the sliding door, and I don’t have to worry about the slippery patch in the entry way at the foot of the stairs, nor navigating the steepness and the railings and the trapped heat and the echo-y noise…..
Anyway, if I don’t have a plan to go out on a really good/good day, I will occupy myself: housework, organizing, drawing, reading, etc. Occasionally I get really enterprising and try to find a job I think I could manage, though that quickly gets depressing. I have options out on Fiverr and Moonlighting, but no one is biting on either. I am doing some side work for a friend, but it is not enough to make a dent in our bills. Still, every little bit helps! So, I work on my virtual marketplace, do the work for my friend, and so on. And I organize our group for protests in our area currently (because the Stockley protests are happening now).
On a neutral day, I’ll usually try to do those types of things, too. I’m more reluctant to stay out of bed, though, and I might take a nap if tiredness is winning. But I try to stay awake and keep myself going through the day. I am less likely to job-hunt or organize around the house, but I will try to do at least one housework thing and, if there’s a protest thing to organize, I will try to stay on top of that–mostly because I know if I don’t do it, no one else will in our group. And I know that if my white self shows up, I bring at least 2, and up to 4, other white people with me. If my white self doesn’t show up, none of them will go. And that’s just…it’s a lot of responsibility, which is a little unfair on me. I do wish that, because I deal with so much pain and nausea, they would at least take turns with me–or be more willing to go when I cannot. But, this is what it is right now.
On a bad day, I am pretty likely to stay in bed and take a nap. Depending on how bad things are, ‘nap’ might be a stretch for the sleeping that happens. I sometimes just need to be covered in blankets for pressure and heat, even though I love to be cold, because my joints ache so badly. And my migraines often cannot be quelled by anything other than sleep and time.
On a really good or good day, I will get decent sleep and probably be able to fall asleep somewhat easily at night–although this isn’t always the case. Sometimes I’m so happy from having a good day that I want to keep going or I’m just excited about it, and that makes falling asleep a little difficult.
On a neutral day, sleeping is difficult. My brain just doesn’t want to shut down, and sometimes I can quiet it to fall asleep and other times I can’t.
On a bad day, sleeping is nearly impossible when I actually want to be sleeping. My brain weasels just will not let me sleep. Every time I drift off, something jumps or jolts me awake–a sound, a movement, a flash of a memory through my brain. And sometimes this ‘bad’ combines with the rest of the bad, and sometimes not. Sometimes it combines with the neutral or the good–especially if I’ve gone out somewhere, and then come home from seeing someone.
Hanging out with people is a special kind of torture for me, because I love people. I miss hanging out with people, and I want to see them and know how they are doing. And also, I torture myself over ever single thing I say and do when I see people I don’t normally see. I do it some with the people I do see on a day-to-day basis, but I know I can ask them about it and they will help me understand or lay my fears to rest. But those I don’t see regularly–it’s a little bit different. So, sometimes, even though it’s a ‘good’ day, it’s a ‘bad’ night because my brain is just so difficult with me. And then I go into a weird good/bad day the next day, and so on.
So, this is basically what things are like for me. It’s not a perfect run-down, because sometimes I’m having a good day and then a migraine strikes out of the blue, or my knee pops out, or something–but it’s a close approximation. I try to remember to eat food and drink water throughout my days. And take my pills. And when I hurt a lot in specific places, I use patches or heating pads, or ask for massage from my partners. And I mostly feel very exhausted and in pain of varying levels.