Blog, life

Living my best life is sucking the life out of me.

Its 2:00 in the morning, and I am writing because I have, once again, destroyed my sleep schedule.

Well, not just my sleep schedule.

I have idiopathic intracranial hypertension. It makes me forget things, feel crushing headaches every moment of the day, occasionally lose my ability to see, and want to sleep basically forever. Left to my own devices, I will sleep for twelve hours and still be able to take a substantial midday nap.

Such is life.

Unfortunately, this doesn’t allow me much time for anything else. This doubly sucks, because what time IĀ am left is also devoted to coping with the headaches, dizziness, anxiety, depression, and other trappings of having a head full of surplus brainjuice. Showering is tiring. Clothes hurt. On a high-pressure day, even holding my head up is more than my neck can manage.

I combat this somewhat by strictly scheduling my day. (It’s particularly helpful for the depression — if I don’t leave myself enough time to think, it’s harder for it to get me.)

This means waking up at 6:30 AM, using a pedaler to get some exercise, having breakfast at 7:00, then being at my computer to work on blog posts, paid writing, or artwork (on days when I’m able to) until 10:30. After that comes carefully broken up blocks of time for another half hour of physical therapy, meditation, taking care of my apartment and cats, doing whatever dinner prep my goldfish-like memory allows for (no stoves or ovens if I’m home alone), and getting in bed by 2:00 PM. From there, I sleep until my S.O. comes home from work, eat dinner, hang out, and handle any unfinished work from earlier in the day. By 11:00-12:00ish, it’s time to sleep again. It sounds weird and restrictive, and it is. It’s also carefully arranged around the times of day when I’m the most likely to experience pressure spikes, so I don’t have to work and fight a crushing headache at the same time.

Polyphasic sleep is a strange thing. I feel better when I divide my sleep up into regular blocks, twice a day, even if they are only for a few hours at a time. The only problem is, it isn’t really a natural state for me — even though it’s what lets me get the most done and do more to try to take care of myself, it requires an exhaustive (and exhausting) level of planning and tenacity. Let one part slip, and everything else falls out of whack. Skip exercising, and hello muscle pain. Skip meditating, and good morning, panic attacks. Fail to fit my paid writing jobs into their particular block of time, and hey there, inbox full of annoyed client emails!

Scheduling around it can be difficult, too. The rest of the world doesn’t really readily accommodate people who are the sleeping equivalent of hobbits, and, while being able to nap at 2:00 PM would’ve been the pinnacle of luxury when I was working a 9-5, it’s a lot less decadent when I’m using it to force a damaged brain that needs 14 hours of sleep into functioning on eight or ten. If I need to go to an appointment during sleep time, phase I, then half of my sleep isn’t going to happen that day… which means more pressure spikes, anxiety, brain fog, and forgetting.

Sometimes I wonder if I’m holding myself to a standard that doesn’t work anymore. I measure my worth by what I produce (but, perhaps ironically, this does not account for pumping out several extra ounces of cerebrospinal fluid on the regular). It isn’t even necessarily about tying my self-worth to work — even when I earned more, I had deep feelings of discontent when the only thing I had time to create was profit for my employer. I’m fortunate now that my job, as small as it may be, relies on me producing actual, tangible things I can take pride in for their own sake. As difficult as self-employment can be, particularly for a disabled person, it’s a hell of a lot easier for me to cope with than having to measure my productivity by what an employer feels like paying me.

But does this idea of productivity really benefit me or anyone around me? Is tying so much of my self-esteem to what I’m able to create actually a sustainable act? What would it feel like if I stopped?

There are spells out there. Cord-cuttings, banishings, all sorts of tiny ceremonies for getting rid of the things that no longer serve you. I’m well enough versed in them that it wouldn’t take too much for me to adapt one to fit my needs, or even create a new one. I don’t think I’m ready to, though. Not yet.

I’m doing more than I could before, but man, I’d give it up in a heartbeat for sleep.



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