Apr. 1st, 2017

quirkytizzy: (Default)
I awake to find myself grateful to have woken up at all. I think I screwed up my blood pressure medication yesterday, as I couldn't remember for the life of me which meds I'd taken when. It led me to stay up until 1 AM, obsessively checking my blood pressure.

I almost died over the whole low blood pressure thing. Messing up your BP meds can make for fatally low blood pressure. I'd say I was being paranoid, but I believe that paranoia is well warranted.

I had some really odd symptoms yesterday. I had a ringing in my ears that sounded as if something metallic were pinging on something else metallic. It's like that noise when Mario hits the cube and hears the sound of the gold coins being collected. (PING! I swear it was pinging.)

The headaches are beginning to be under control. But while the head pain was mostly gone, I am, again, struggling with nausea.

If it's not one thing, it's another. That can be so demoralizing. Either I've attempted suicide, or have pneumonia, or have so much water weight that my skin literally splits open and leaves open wounds, or my kidneys are failing, or it's hit my brain and I begin hallucinating, or my BP is wildly out of whack and almost kills me, or I'm dehydrated, or my meds are literally draining me down to nothing, or or or....

When does this run away train, filled with so many complications, get back on the tracks? When do I stop being so physically weak that a goddamn cold can land me in the hospital for weeks?

The water weight, while initially falling off at a rapid rate, is now coming BACK. There's been no recent - at least as far as two and a half weeks ago - hospital and oversaturation of fluids to have caused the regain. I am also itching like hell.

This leads me think my meds are somehow wrong (again), but the walk-in doctors can only do so much and my actual doctor appointment is four days away. Oi.

I was dropping things. Pretty much anything that went in my hands shortly went tumbling to the ground. Coffee. Pills. Notebooks. Pens. Cigarettes. Food. Dishes. I'm not a graceful person by any means. But it felt as if my hands were forgetting they were holding something and so it released whatever I was carrying.

I was dizzy and off-stable, tipping this way and that way everytime I tried to walk. I was giving thanks that the hallway to our bathroom is narrow, as it gives me something to lean on (okay, as of late, STUMBLE on) and sort of slide myself to the bathroom. I am even more drunk-stumbling THIS morning.

I was also experiencing extreme confusion. I pride myself on my vocabulary, but couldn't remember words for the life of me. My voice was slurred most of the day, I couldn't at all follow conversations, and I forgot how to do things like get dressed and use silverware. I kept mixing up my words. I re-edited my LJ, like, a thousand times trying to keep up with the missed and misused words. I finally just gave up on it and was like "They won't mind."

**I** mind. But it's good to know that you guys are not only smart enough to put together what I'm trying to say and that you understand cognitive dysfunction.

Funny, that. I can spend half an hour turning a shirt over and over, trying to put it on, only to find that I don't understand where my arms go or which side is intended to be worn outwards. But I can still remember how to ride a bike, which is far more complicated than not knowing if your shirt is inside or outside.

NERDNESS: It turns out bike-riding is subconscience memory. It's muscle memory, regular memory, and deep memory. (I got curious and asked Google if you could forget how to ride a bike.) It's a very assumptive cliche to state you can't forget things like riding a bike. But it turns out those memories are stored in three entirely different parts of your brain. It's pretty easy for your brain to retain at least ONE of those parts.

I'm very tired this morning. It's hard to explain to the difference when OTHERS say that they are tired and when I say I'm tired. Their advice (always well intended but always way off base) runs along the lines of "Take a short walk! It'll refresh you! or "Get a cup off coffee! The caffeine will wake you up"!

(1) There are times I can barely walk as it and (2) coffee and lupus don't play well together. I risk it enough with single morning cup of coffee, and always feel awful if I have any more. (Which I often do, because while I know it's bad for me, I fucking LOVE coffee.)

When **I** say I'm tired, I mean a tired so deep that driving becomes unsafe. When **I** say I'm tired, I mean that my eyes literally just fucking close and I am OUT, no matter where I am or what I'm doing. When **I** say I'm tired, I mean that I have literally lost the strength to talk. If I'm smart, I lay down before I get to that point.

But all the dr's appointments, and psych visits, calling various agencies concerning treatment, attempting spend at least a few hours a day with Jesse, errand running, housecleaning, and trying to piece together some shred of a social life means that I FUCKING HAVE to push myself well and far beyond the point of being "tired", usually for days in a row.

I pay for those days, usually FOR days, in misery. Every time.

And I am tired today. This means my nap will have to start sooner and likely last longer. I hate sleeping away so much of my life.

The body may be an amazing biological machine. It's also a prison you have no hope of escaping from.

Back to bed. Things will feel better when I wake up again. Hopefully. Lately, I'll lay down for some peaceful, not painful sleep due to the migraines, and wake up juuuust as the medication is wearing off and I'm back to being in pain. Sleep away the good hours because pain-free sleep is awesome, but miss out on my life because I'm sleeping so damn much.

Fun times.

Random

Apr. 1st, 2017 05:31 pm
quirkytizzy: (Default)
* Jesse has kept true to my boundaries all these years. One of them, one the most important ones, is that I do not let people I've never met before into my home. And I usually prefer several meetings between unknown people before they are allowed here.

It frustrated him greatly at first. It likely still does. But he has always respected it. I am so grateful for that.

* My dreams keep throwing me back to the psych ward. Either I'm back in and arguing with staff about getting permission to leave for a few hours a day for a part time job, or I'm sharing hallucinations with other patients, or I'm stuck in never-ending hallways with no doors.

Makes total sense. It's still unnerving.

* The possibility of strokes had not occurred to me, Matrix. But the first hospitalization showed that I'd been smack dab in the middle of a mini-stroke for days. That is something for me to keep on the front burner, to watch out for. Thank you for bringing that up.

* Sometimes writing feels the most useless endeavor I have ever attempted. As if I've wasted the decades of practice instead of building something "normal". I know this is an extremely common feeling amongst writers. Artists in general, I would think.

But there's little else I have a talent for and NOTHING else I have trained myself so hard in. Not feeling well contributes to that and clashes with my need to write. There's no saying you can't learn new things, but it often feels like I'm just writing myself in circles.

* I'm actually glad I don't own a PS4 and have Mass Effect: Andromeda. It's something that I would wind up being so frustrated with. I've been eager and excited to play this game for YEARS now. Ridiculous frothing at the mouth kind of eager.

As ill as I've been, I wouldn't be able to play it right now. Writing on a computer still requires sunglasses in a dark room. Even with that, it still makes the room feel spinney. There's no way I could handle the twisting and turning that combat and level-running involves.

I watch others play video games (for unfathomable reasons, that's extremely comforting for me). But I'm often relegated to just listening to it, as watching it makes me nauseas enough to vomit.

Damn you, Bioware. Couldn't you have had the sense to put off the next release of my favorite game series until I stopped being sick?

* My father was able to get me a smart phone and put me on his plan. It's been so long since I've had a smartphone (well over a year now) that I practically forget how to use it. All the apps I once thought as of as dire necessity now seem extraneous. But it's unlimited text and call and save us so much money on phone cards. (Jesse still has a pay-by-the-minute burner phone).

* There's more to write. Always is. But even as I managed sleep for five hours earlier today, the nausea is overwhelming, even after eating what seems like a million pills for it. I don't know what else to do, so I'm going to lay back down and see if that helps.

It may or may not help. I'll have to put on my sleep mask to completely darken my vision. But at least I can take off my sunglasses.

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