My DPA gave me an answer.
For how to handle the clusterfuck of various health crises all converging on me.
She said fear and hopelessness wastes energy.
Instead, she said.
Resign yourself to the fact that there are many possible outcomes. From the best all the way to death. Don’t feel scared and hopeless about any of them. Just resign yourself to the fact that any of them could happen.
Then choose what you want to happen, within reason. And become absolutely determined to work towards that outcome no matter what.
She said once when she had almost no energy because she was dying from a botched procedure. That absolute resigned yet determined mode gave her a second wind that allowed her to fight to get treatment and save her life.
If she’d been scared and hopeless about it and stayed that way, she probably would have died. No energy to spare.
And I understand that way too well. When you have so little energy that breathing becomes difficult (enough to need mechanical assistance) if you over exert yourself by, um, going outside? You start understanding how indulging certain feelings can make you feel worse, or even kill you.
So I can see what she means. I suspect she’s right. I’m going to try it. I’ve become tired enough that resignation is easy, and she said that’s a good sign — while you can look at this logically, this is more a soul thing than a head thing.
Too many things piled up going wrong lately.
And no matter how hard I try to be accurate people I really trust tell me it’s even more serious than I think.
So that went kind of badly.
So yesterday at some point after getting home from the doctor, my body responded as if I had just done something really major. Like airplane travel, which I avoid for a reason.
That is, I spent quite awhile with most of my muscles really loose. Except when they were twitching. And I mean twitching the way they do when you stimulate a nerve. Not like tics.
Then there was the breathing. I turned on my bipap because my lungs felt weak, and before I knew it it had lapsed fully into the mode where it keeps pushing huge bunches of air into your lungs over and over to stimulate breathing when it thinks you’ve had central apnea. Translation: My breathing was way too weak and shallow and it noticed.
I Skyped my DPA because I was worried. Normally I manage my body well enough that a near-total collapse like that is rare. And a doctor’s appointment shouldn’t trigger it. She told me not to move or go anywhere for a long time. So I didn’t. And it got better after several hours. Not good better. But less dangerous looking, less twitching, more able to move my body in minor ways without exhausting myself, and less disoriented. (I’d gone delirious off and on during this. I’d even had some disorientation before I got on my ride home.)
She also told me to do absolutely nothing strenuous over the weekend. (For me, that means stay in bed except for the bathroom, and if the bathroom gets too difficult use the bedside commode I got when I first started having symptoms like this years ago. I do have a Hoyer lift too if things get too bad.) And she’s insisting on calling my doctor as soon as the weekend is over.
So that was a big round of WTF. All we can figure is that the hospital wore me down as it usually does. Then the moment I started getting any energy back at all, I aspirated and got a moderately bad chest infection, then caught a head cold as well, and the antibiotics for the chest infections always wear me out themselves. So I’m running dangerously low on energy and my body is noticing and reacting to that. Even before I left for the doctor my lungs were a little weak, but not like after I got home.
Now I have to avoid overtaxing… well, anything. Sometimes my body frightens me. And I’ve been especially frightened of the trend lately of every time I get run down and try to replenish my energy stores, something comes along to deplete them even more. It’s a frustrating and scary pattern.
Another thing not helping is my gut being so out of whack that I’m only taking in 500 calories a day of Ensure, and even that makes me feel nauseated each time I drink it.
Thank you, body, for developing several conditions that conflict with each other.
This BEYOND pisses me off. Don’t EVEN fucking dilute my Gatorade without asking.
So I found out that the reason my Gatorade started tasting like shit a few years ago is because a staff person decided without telling me, that I needed less sugar so she was going to dilute the stuff. She never spoke to me about it.
This would be offensive enough because I’m certain it was because I’m fat. It’s like the people who got me sugar-free jello when I was on a liquid diet, ensuring that I got no nutrition at all.
But the whole reasons I drink Gatorade are twofold. One, because I dehydrate easily and quickly and it’s the fastest way to make sure I keep my electrolytes balanced. (Diluting it makes me less likely to drink it and less likely to benefit when I do. Given how many times I’ve had to go to the ER to get IV fluids… I can’t even imagine.)
Two, because it has, even at my very worst, always had an extremely good effect on my overall weakness. Which we suspect to be caused by some glitch in the ATP cycle, so that makes sense. That stopped happening around the same time they started watering it down. Because cutting down on dextrose means cutting down on a very rapid source of muscular energy. But who cares because sugar is uniformly evil right?
But that doesn’t matter because I’m fat and therefore it’s apparently fine to cut my sugar intake without asking. And even if I wanted to do so, there would have been ways to do it with less overall effect on my health. Because Gatorade is only one way I get extra sugar, and the only way where it’s actually imperative that I keep it the way it is.
This by the way is what happens when you’re disabled in a way where other people do 100% of the food prep and meal planning. People make decisions on your behalf without asking you. And since most people who are full time powerchair users and don’t have an incredibly fast metabolism or a wasting disease or something will get fat, this is probably incredibly common. It’s impossible for me to monitor everything they do. And in the DD system they’re generally more paternalistic than the phys-dis system, so you get decisions like this more often.
This is what happens when people freak out over weight but don’t freak out over immediate health concerns. It’s also what happens when people make decisions for you and think that you aren’t doing certain things for an actual reason. (Another continual problem in the lives of any disabled person who gets services. I have a friend who puts everything at the front of cupboards to make it wheelchair accessible and no matter how many times she tells staff to leave it there they push it back to make it look tidy.)
Just fuck. I need all the energy I can get. Lacking muscular energy can mean life and death for me, as became very obvious this past week when I got too weak to get enough oxygen without using a breathing machine. So can dehydration, as evidenced by how many ER visits? Even if I wanted to cut sugar because I’m fat that would have to take priority. This is just… I can’t even… fuck.
It’s actually getting hard to breathe. I’m going to be fine with the bipap on. It’s got a setting where it detects non-breathing or shallow breathing and pushes huge amounts of air into my lungs. And I’ve survived much worse than this before even without the bipap, although it was hard and involved greatly slowing my breathing so I could rest in between breaths. But this is serious, in terms of how my muscles are faring in all this, and which ones are getting messed up.
read a fucking book
Not that anyone should have to justify what technology they do or don’t use. But I was given my Kindle at a time when my arms were too weak to hold a book and turn the pages for the length of time it takes to read a book. I’m stronger now but I can easily get that weak again by using my arms too much — like by reading long books. The voice feature is more than just a cool addon if you’re visually impaired, dyslexic, intellectually disabled to the point of finding reading hard, or get migraines from the eye strain of reading. And this is just off the top of my head.
Technology that seems frivolous to others can be life-changing for disabled people. I’m in bed close to 24/7 and having a way I can read without a backlight, while lying on my side and barely twitching a finger to change pages? It’s amazing. Having a way I can read without my eyes when I’m overly prone to migraines, or when my visual perception is shot to hell? Also amazing. Way easier than trying to surf the web with emacspeak with my eyes shut.
People who make remarks about how pointless technology is rarely consider this angle. Of course — nobody should feel that they need to justify their reason for technology (and I even believe this about technology expressly made for disabled people and socially considered off limits to anyone else). People can use a Kindle for any reason they want up to and including laziness and I have zero problem with that. But the fact that people making these remarks never even consider that there are people who can’t read books or can only do so at risk to their health or pain levels… that irks me in a completely unique way. Despite collecting books I still do 99% of my actual reading on Kindle for exactly those reasons.