Crip Time

Crip time is this diagnosis of the exacting, you know, and punishing even, standards of economic time by which each human is measured as an index of our worth. That really is what is at stake here.

Sara Hendren (Crip Theory – Wikipedia)
SpotifyInquiring Mindsomny.fm
What Can a Body Do?: How We Meet the Built World

I was on a work call when everyone (a group of disabled women) was only communicating through text. Text read out by screen readers. Time slowed down. We all typed one after the other. Waiting for the other to complete their thought. Waiting for others to read. Waiting for others to type. The entire process had patience embedded in it, but also a challenge to “normative” ideas of discussion time and pace. No one impatiently typed over others or wanted to “move things along”. The time was well spent in engaging with each other at our own pace.

madinasia.org

Time is not what we think it is. Time is not what business tells us it is. Time is not the metronome beating out endless seconds. Time is the breath in your lungs. Time is the beating of your heart. Time is the length of the hug you give, the hug you receive. Time is to be treasured.

Featured Image: MoMA

Vestibular Physical Therapy

I had been seeing a Physical Therapist for years before the time of COVID. I have a recurring issue with the lower back, a common complaint among older people, come to find out. I’ve also messed up my neck and shoulders in car accidents over the years, so I have plenty of things to work out with my physical therapist. Or did have before the time of COVID. I haven’t been back to Symmetry Physical Therapy since before March of 2020, because as painful as my joint and muscle problems are, they pale in comparison to the kinds of problems catching COVID would mean to someone like me.

Back in 2019, when the lack of plague allowed me to leave my house for things other than the essentials, I just happened to be at my Physical Therapy appointment when I mentioned that I was having recurring problems with minor vertigo and dizziness that lasted for weeks or months at a time. He got a quizzical look at that point asked me if I had ever tried any vestibular training exercises.

I had never even heard of vestibular training before, much less tried any of the exercises. He then demonstrated a few of them for me and had me work through them. I don’t know that they had any positive effect, but the knowledge that there was PT for my vestibular problems started me on a mission to find out more about the subject.

After mentioning the subject to my Ear, Nose and Throat doctor (ENT) on my next visit (she was mortified that we had never discussed the subject before) She gave me a referral for and I went to see the specialists over at 360 Balance, which just happened to be the people that my PT had been to a seminar with and had put the bug in his ear about retraining the vestibular system after injuries like the ones that Meniere’s inflicts on sufferers.

Over the course of the next six months or so we set up a set of exercises that addressed the issues that arise from the inner ear damage that Meniere’s causes. The exercises did, in fact, stop the nagging dizziness problems that I had been experiencing all that summer of 2019, and I have not had a recurrence of those symptoms since then. Did not have them again until a few days ago.

I’ve been slacking off my exercise regimen lately. The allergens outside the house have kept me sequestered indoors more often, and even the little bit of pollen and dust that get into the house are enough to make me feel like I’ve got a permanent head and chest infection. A feeling that can persist for weeks on end. Starting sometime last week I started to feel like I was heading into another bout of vertigo, so I started taking my meds in response. I’ve managed to avoid worshipping at the porcelain altar so far (knock on wood) but I have had that nagging bit of dizziness and nausea that comes along with it that has persisted for almost the whole week since I first noticed the warning of oncoming vertigo.

So today I decided it was time to break out the PT routines and see if I was going to finally worship the god of the toilet bowl or if I was going to stop feeling this stupid constant dizziness. The results are mixed. I do feel slightly less dizzy just sitting here typing. Any kind of movement does make the dizziness worse though. There is something different about the way my inner ears are working at the moment. I can determine that much. I don’t think I’m quite through the woods with this re-arrangement that my vestibular system is going through.

At least I can sit here and type words without feeling like the room is going to take off spinning like a top. That is a good thing. I think I will go walk the dog once I’m finished writing (I did) but in the meantime I’ll outline the exercises the therapist has me doing to help ease the dizziness.

  • Dynamic Standing Balance – I have a pillow that is so damn firm that it doesn’t give under the head when you lay on it. The Wife and I both hate the thing, but now I have a use for it. I place it on the treadmill near the grips in case I fall over and stand on it. Then I close my eyes trying to maintain balance for 30 seconds.
  • Kick the pillow out of the way and stand with your ankles touching. Close your eyes and try to maintain balance. If you can do that for 30 seconds, move your head from side to side at a moderate pace and try to maintain balance for 10 back and forth movements.
  • Vestibular Ocular Reflex (VOR) Exercise/ Gaze Stabilisation Exercise – I do both back and forth and up and down with these exercises. I set a metronome to 150 beats a minute and try to keep the mark on the wall steady for at least 15 seconds of head movement. I had to slow the metronome down today for the first set. I could not keep the mark still at that pace.
  • I can’t find a name for this one. I hold my thumbs out at eye level and maintain my gaze on them. This should be done against some kind of busy background. Bookshelves or blinds are both good choices. Rotate your torso to the left and to the right, back and forth, repeatedly, maintaining eye focus on your thumbs while the background moves behind them. I find this to be one of the best exercises for quieting the periodic dizziness that I get between vertigo spells. Making the world spin on purpose while focusing on a still object counters the feeling of spinning when it hasn’t yet turned into active vertigo.
  • Walking with head movement is the last exercise that they had me doing. Not just side to side, as the video demonstrates, but also up and down and diagonally (high left, low right/high right, low left) if you can pull that off without tripping all over yourself, try giving yourself mental tasks to do like naming groups of things or counting backwards from different starting points.

The hard part is making yourself do these things every other day or so. You feel fine and you think I have better things to do, so you don’t do the exercises that day. Before you know it a month has passed and you wake up dizzy for no apparent reason. Then you have to get back on the bandwagon and deal with the dizziness and the nausea until the exercises have the intended effect and you start to feel better. Now I’ve done my exercises and walked the dog. Time to reward myself with some more video gaming!

Normal Saline Causing Vertigo?

I learned something new. I love it when that happens. When I was hospitalized for the night after having my angioplasty last year,

…I started to experience vertigo. I didn’t think too much of it, other than the irritation that I felt while trying to wheedle a Xanax out of the nurse because of the vertigo. The stress of having to argue with the nurse about a medication that the hospital could see on my charts as being a medication I have been prescribed adding to the anxiety of an approaching vertigo spell. Yeah, that was fun.

But still. I couldn’t figure out why I had that sudden bout of vertigo. No warnings, none of the normal patterns (not that surgery is normal) But then I remembered that they had me on an intravenous drip of normal saline for most of the day and the night, about 16 hours of normal saline by the time I started to feel the spinning. For a lot of Menerieans salt=vertigo and saline is definitely salt. I have been on a reduced sodium diet for decades now because reducing salt is also what they recommend for people with hypertension, another chronic illness that I enjoy.

Sixteen hours of saline fluid introduced into my system. Surely that wouldn’t cause vertigo, right? I mean, normal saline is the same sodium levels as blood, right? Why else call it normal saline? It turns out that this is not the case. Normal saline just means the saline solution most frequently used in hospitals, and the salt levels are not the same as the levels in the blood.

Each bag of saline contains the same amount of sodium as 20 snack-sized bags of potato chips.

webmd.com

I haven’t eaten an entire bag of salted potato chips in… well, it has to be at least a decade. I occasionally (once a month or less) get a snack bag of air-fried chips from Schlotzsky’s (another Austin original) along with my regular original sandwich (hold the cheese and add the guacamole, please) and unsweetened iced tea, and that is almost more salt than I need in a day. I know they changed that bag at least twice while I was there, which is a lot more salt than I needed.

The assumed harmlessness of introducing normal saline into the bodies of all of their patients has been a point of worry for many doctors. So much so that there have been trials conducted using other replacement fluids than saline solution,

For more than a year, the emergency room and intensive care units at Vanderbilt rotated the IV fluid used to hydrate patients. On even-numbered months, they used saline, and on odd-numbered months, doctors could choose between either lactated Ringer’s or Plasma-Lyte-A. Both Ringer’s and Plasma-Lyte have less sodium than saline, along with other electrolytes. Most of the patients on balanced fluids in the study got lactated Ringer’s.

webmd.com

When I read the phrase lactated Ringer’s I heard it in one of the voices from the show Emergency! from way back when. That was the show that first got me interested in medicine and emergency care. My mother would probably be horrified to learn that I was indoctrinated into the evidence-based medical system by a TV show that she let me watch as a child.

Facts VerseEmergency! Behind the Scenes Facts & Secrets – Aug 26, 2020

Lactated Ringer’s or the Plasma-Lyte appears to be the better way to infuse fluids into patients. Not world’s better, but statistically measurable improved results from not relying on normal saline for all the patients admitted into the hospital. If you also need lower saline you might ask for one of those two the next time you find yourself needing surgery. Here’s hoping that time isn’t in the near future.

New Year, New Vertigo

I noticed it as I headed for bed this morning. Turning over in bed caused the world to spin, requiring me to focus in order to calm the spin. It wasn’t bad, but it was persistent.

It was also present when I woke up. As I moved about today, the spinning has gotten more persistent, tending towards nausea. So it is time for the Xanax again. The knee and the back are still painful from my bathtub flight last year, so I’m going to sit here and play World of Warcraft in my pained and vertiginous state. Because I’m going to do something today other than drool on myself. I’m hoping I’m not coming down with whatever sickness the Son brought home from college with him.

Happy New Year?

Flying in the Bathtub

I was going to make spaghetti. That was my resolution. I was going to make spaghetti because the Wife had declared that her spawn and I were on our own for dinner since she had fed herself. The Son is in town for the New Years holiday, and I remembered that he loves spaghetti. So I thought “I’ll cook spaghetti tonight.”

Then I turned around in the shower to get my towel to dry off, and my feet left the floor of the tub. I slipped. As I’m suspended in midair I think to myself, “So this is how I die.” Naked, tangled in a shower curtain, with water raining down from the still-running showerhead. Neck broken, maybe? They’ll find me dead on the floor of the tub and they’ll say that I died due to a lack of adhesive ducks.

My second thought was “I’m not dying in this tub, motherfucker!” Ask the Son, he heard the cursing as I hit the edge of the tub and then hit my head against the wall so hard I thought I had broken it. Broken the wall. I was pretty sure I broke my head as well, because I lost vision for several seconds after the impact of skull against wall. I also mashed my left shoulder against the tub edge and jammed my left knee into something even more painful but I don’t recall what that was. Soapdish? Who knows. Somehow I managed not to drag the shower curtain down into ignominy with me.

This was on December thirtieth, the day before New Years. I spent several quality hours sitting in the hospital emergency room as they did a CT scan of my head and then waited to get back results. The CT scan was required because I’m still on blood thinners after getting the stents put in my chest in May 2019. Internal bleeding is a frequent problem when you are on blood thinners. I get bruises all the time for no good reason these days, much less accidentally trying to kill myself in the tub. So a brain bleed from whacking oneself so hard that you are certain the tile wall might have broken under your head (it didn’t) was a very likely possibility.

I got lucky there. No internal bleeding in the head. I wish the same could be said of my knee, shoulder and backside. All of which have impressive bruises all over them. The shoulder is finally starting to feel better today (the third of January) and the knee is strong enough to let me get up and down the stairs a few times so that I can write on the blog for the first time since the accident. The bruises on the backside are still going to require more heat to get them to be less pronouced and painful. Here’s hoping that they respond to heat treatment. If they don’t I’ll have to be asking medical professionals to look at my ass.

…and really. Does anyone want to do that? “Check out my butt Doc.” I’ll pass, thanks.

Stability? What’s That?

I wake like a newborn foal. What is this thing called stability? The world spins when I roll over. I try to drink deep because I am thirsty, but the vessel is dry. Time to try walking.

Babies walk better than I do. Wino walk. There are things I need to do when I wake up. What were they again? Ah, the glowy thing in my hand that is mysteriously called a phone has lists on it.

Meds. Past time to take my meds. I need food for meds. Time to make oatmeal. I went to sleep with meds and vertigo, and I wake up with vertigo, still needing meds. Such is life with Meniere’s disease.

I Just Don’t Feel Right

How to describe what happened yesterday? I couldn’t describe it while it was happening to me, so I have little hope of describing what happened now that it is over and I feel normal. At least, as much as any chronic illness sufferer can be said to feel anything approximating normal on any average day. To the extent that normal equates to average, then today is a normal day.

It wasn’t pain. It wasn’t numbness. I just didn’t feel right. I wasn’t hungry, even though I should have been. I wasn’t tired, even though I should have been. I just felt… off. I couldn’t even put my finger on exactly what was off.

The Wife needed me to help her with errands that needed doing, so I shelved my weird non-feeling that I couldn’t describe and went out and sat at the Social Security office to file paperwork while she went out and did the other things on the todo list for yesterday. Then we came straight back to the house were I forced several glasses of water down my throat and then went back to bed and slept for another six hours.

When I woke up it became clear that the Irritable Bowel Syndrome might have been the cause of the entire day’s problems. I’ll spare you, dear reader, on the gory details that lead me to this conclusion. Needless to say, I felt much better after visiting the toilet when I woke up. I’ll need to remember to force fluids the next time I feel off in some weird way that I can’t explain. I do have a bad tendency to eat when I’m thirsty rather than pick up something to drink, a habit that can make constipation worse rather than better.

CPAP Failure

I was slowly strangling. I was underwater. A place that can be heaven for me, so long as I can get back to air when I want to. But I couldn’t get back to air. There was a puzzle in front of me. I had to solve that puzzle to get back to the surface and breath. How did I get here? Why couldn’t I breathe?

Oh, something was holding my mouth closed, and my sinuses were blocked. How odd. Why not open your mouth to breath? Underwater? A voice in the back of my head says “you are not underwater, moron. Breathe!” So I open my mouth and breathe, and then I wake up.

The stupid CPAP machine is off again. I don’t know if I forgot to turn it on, or if I turned it off in my sleep, or if the machine is simply failing. What I do know is that this is the second time in a few weeks that I’ve had my sleep disturbed by it being off while I have the mask and chin strap on, and the dream that prompts me to wake up is that underwater puzzle dream. I can almost picture it and the game it is part of, but the image escapes me now. It was so vivid in the dream.

Almost a nightmare. I can’t go back to sleep even though I’ve only been in bed for a few hours. So I get up and pad around. Eat a little cereal, take an antihistamine and an expectorant, try to relax. After a few hours I padded back to bed and again tried to sleep. This time I woke convinced the power was off. I feel back asleep with my hand over the exhaust port on the CPAP mask, reassured that the machine was working by the air washing over my fingers.

…even more reassuring is the knowledge that I will be going in for a recheck of my sleep issues in the coming weeks. Then at least I’ll know whether it is mechanical failure, deteriorating health, or active imagination that is causing the CPAP to stop working sometimes. Fingers crossed in the meantime.

Full Rotation Today. Azshara Declared Victory Over Me.

I haven’t been tracking my vertigo spells on the blog. I don’t know why. I think I didn’t want to make everyone reading this suffer through repetitive bouts of vertigo with me by my documenting the episodes on the blog directly, each time that I went through one.

I wasn’t really able to type or even make noises beyond gagging on vomit between requests for someone to kill me in the years of suffering that I endured before being prescribed Xanax and Promethazine, which work quite well to subdue the worst parts of rotational vertigo.

…and after the attacks were over, sometimes two days later, I would be unable to do much more than sit up in bed and eat soup for at least a day. So I would have had to remember to go document the event while still recovering from the trauma of the event. Anyone who has had an intense illness can testify just how much they don’t want to go back and revisit just how hellish the event was later. “…and then I blew chunks all over the bathroom floor. Luckily I didn’t fall back into it when I passed out.” All the pain of a drunken bender without the entertainment of being stupid drunk first. Leave it in the past.

Now that I have a medication regimen down, I just have to deal with the fuzzy-headedness the drugs inflict on me. I’m stuck for hours, essentially staring at a fixed point in space so as to anchor the eyes on something. Oops they’re drifting left again. Find the Catbus plushy. No more drift? Okay, back to writing. Lather. Rinse. Repeat. For as long as is necessary. For as long as it takes to get tired and fall asleep.

This year has been really bad. The worst since I stopped working and could eliminate stress by not having to perform on a set schedule every week. The increase in symptoms started February a year ago and has slowly gotten worse. I’m pretty sure it’s the second ear failing on me, having gone bilateral then. If that’s the true cause of my current suffering, then I should level back out after a few miserable years, and hit a different long-lasting trough of capabilities. I’ll just have to take stock again then, see what I can still do.

In the meantime I’m going to start trying to document each time I get full vertigo. Since I can do it while sitting here trying not to spin, access to the laptop being a qualifier, I’m going to do my best to write something while the vertigo is kicking my ass. I’m going to do this because this blog is for me as well as for you, dear reader. It might be handy to be able to go back and check how bad the bad really was.

This time the vertigo popped right in the middle of the heroic Azshara raid boss fight my current raiding group has been working on for the better part of two weeks. It looked like we might have a good chance of getting her down this week, but I kept getting dizzier and dizzier and missing prompts to go here and there as the mechanics of the fight require.

FatbossTV – Queen Azshara Normal + Heroic Guide – Jul 15, 2019

Just too much screen movement for a day that the eyes want to pretend that the world is spinning around my head. I had to bow out and leave them to their work. Hopefully they did better not burdened by my inability to deal with so much motion on the screen. It’s taken two hours to get the spinning down to the point where I can sit in my adjustable bed and type this simple entry up.

I don’t know how many actual spells I’ve had this year, which is why I’m going to start trying to do this each time I have one. I know it’s the first one in October because it’s still the first week of October, or was until yesterday. But I had at least two in September, ditto in August and it was even worse in July. June wasn’t too bad but that was when the light dizziness really seemed to kick in, May leading into June, and I can’t figure out what is causing this constant near-nausea inducing dislocation and disorientation on a daily basis. It is maddening.

I’m getting blood tests done for allergies this time, betahistine will interfere with the skin tests and I’m not willing to stay off it for a week. I’ve also started some training in vestibular therapy while I’m in physical therapy for lower back pain. I’ll write more on that subject when I know more about it. I just want the dizzy to GO AWAY. But it won’t. So I’ll medicate it away when I have to.


October 9th – Still recovering from the vertigo last night. I’m going to miss two raids this week. Can’t be helped. I’m almost in a vegetative state today.

News Addiction

If you are depressed stop wallowing in the outrage culture. Think happy thoughts, you’ll feel better.

That was the gist of the suggestion offered to a friend who posted the image featured in yesterday’s article Depression. As if depression is something you can turn off, like a switch. It isn’t like that.

I do follow the news closely these days, as does my friend. I was a news hound for decades before Meniere’s took my joie de vivre. I was active in the Travis County Libertarian Party, taking a hands-on role in as much local politics as I could handle while still holding down a full-time architecture job. I listened to news and radio talk shows constantly while working on whatever architecture project was in front of me that day so as to keep informed of whatever the current trends were. It was crucial to know what was happening if you wanted to have a hand in changing it. I switched to podcasts for my news well before most other people even knew that podcasts existed. I read newspapers and news sites. I immersed myself in the political realities of Austin, of Texas, of the United States, and did my best to be the positive change that I thought the world needed. Just as every good citizen of the world should do.

But then I got sick, and I didn’t get better. I didn’t have a livelihood any longer and I couldn’t look forward to finding one again, probably ever. The constant stream of information about what was going on in the world became a distraction from what it was that I needed to deal with. The barrage of things that I couldn’t change externally just drove home how helpless I was to even be able to alter what was happening in my own body.

That was what was important. Figuring out what was wrong with me. Finding ways to cope with the new reality of my disabilities. I didn’t have time to spend on informing myself about things that weren’t directly impacting my health until I found a way to stabilize my own internal situation.

So I quit the news.

I quit listening in 2006-ish. I just quit, cold turkey. I’m not saying that I didn’t know what was happening in the world, I simply quit seeking out that information. There is no way to stay completely uninformed (a perfect idiot) so long as there are people who tell you things they think you want to hear. But I put science, medical and skeptical podcasts at the top of my queue starting at about that time and stopped even listening to news feeds that didn’t include other information that I might personally find useful.

I only started back listening to the news directly, for news content, when all the hatred for Barack Obama made me decide to find out what all the fuss was about. That was when I realized that the news culture had split into two camps that couldn’t even agree on basic facts. While I hadn’t been paying attention, FOX had lead conservatives and Republicans down a dark alley that lead to a thousand foot cliff and then expected all those lemmings following them to walk off the cliff in blind subservience.

In determining what the facts were I came to realize just how poor my understanding of the world was prior to that point, and just how poorly the average American, the average human, understands anything that isn’t forced into their stream of consciousness. I stopped seeing Rachel Maddow as someone who brought up questionable narratives about accepted truths and instead saw her as the accomplished storyteller that the current crop of news consumers clearly see her as today.

However, It’s going to take an American version of the Extinction Rebellion protests that have been taking place in London and New York to also take place in everytown, USA to wake the average FOX news watcher up to the requirement that we do something about climate change. I’m not even certain that anything short of re-education will make them understand just how scandalous their behavior and the behavior of their leaders are.

The Extinction Rebellion Returns | Jonathan Pie | 9 October 2019

But I remain hopeful, for the time being.

After all, the Wife was telling me “they won’t impeach Trump” just two weeks ago. Now Rachel Maddow has said it is a foregone conclusion that they will impeach him. I have to agree with Rachel. I don’t see any way for them to not impeach him given the crimes he has committed that we know of, to say nothing of the crimes we suspect him of but still don’t have the proof to convict him of. The sticking point remains the Senate and Trump’s co-conspirator, Moscow Mitch McConnell.

I’m reserving judgement until after the power hand-off that should occur in 2020-2021, impeachment or no impeachment. We’ll see just how bad things really are at that point. To draw this circular argument to a close and tie it in with the title, I quit listening to the news precisely because I felt that my health was suffering from spending so much time obsessing about what was going on in the world and what the proper solution to the problems were. I’m glad I stopped paying attention then. The solutions that I would have embraced back then are completely different than the ones I would embrace today. 180 degrees different.

So I improved my health by breaking the news addiction. I’ll break it again if I feel that following the news is negatively impacting my health. So long as the authoritarians that back the Orange Hate-Monkey lose power, I’m pretty sanguine with whatever else happens along with it. Which means, my depression isn’t based on my news consumption. But I do appreciate the suggestion.

Wildly expanded from Facebook comments.