1 in four people will have to go on disability support before retirement. That means of the four or five people who might be reading this right now, one or two of you will need to be on disability in the near future. As this blog is read more frequently by disabled persons, that number is probably even higher and many of the complaints aired in the above episode probably echo with their own experiences.
I quite literally could have died during the five year process it took to get disability and it would have done nothing to demonstrate the need for support that my family and I needed at the time. The amount of fraud in the system is miniscule and yet the harm that is caused to disabled people and their families by delaying disability payments can be demonstrated time and time again. It is a black mark on our country’s moral ledger that this harm continues.
Once you have qualified for disability it then becomes a constant irritant, this need to demonstrate a need for continued support as if chronic illness is a thing that you recover from, or that the lasting effects of years of illness would not in themselves merit some level of support from the government. Rather than being something that you had to demonstrate a need for, disability payments should be a benefit that is granted automatically to every person who is not working. Granted automatically so that loss of housing, food and security isn’t a thing that the newly unemployed person suffers from.
If there are shirkers living off those easy benefits then it’s a simple matter of getting those people the mental help they need to get back out of their houses and get back to work doing something. You won’t live long sitting around your house doing nothing. Twenty years of disability has proven this to me. The only thing that keeps me alive now is getting out and engaging with the world on a near-daily basis. Something that I’m not allowed to charge anything for if I want to keep my disability payments.
Universal basic income would solve this problem, but I don’t expect we’ll be seeing that anytime soon no matter how feasible it might seem to the economists who support it. In the meantime if you aren’t working, can’t work, then you shouldn’t be facing eviction and eventual starvation because of it. It just shouldn’t happen anywhere that calls itself civilized.
I went to see my Otolaryngologist (an Ear, Nose & Throat doctor or ENT) yesterday. I had an emergency work-in appointment for the afternoon. The Wife drove herself to her cardio rehabilitation appointment in the morning, the second time she has driven herself since she had open-heart surgery in July. I’ve been driving her three times a week to that appointment over the months since, and the strain of being there for her over the course of those months has finally taken a toll on me.
Last Wednesday I started experiencing rotational vertigo. It persisted through the day, no matter how hard I tried to tamp it down. I finally gave up and took Xanax to quell it, but then I started feeling nauseous and so had to add a Phenergan to the mix to keep myself from hugging the commode for a few hours while the room continued to spin. Needless to say, I slept the sleep of the dead for about twelve hours.
When I woke up the next morning I could tell that my hearing had altered. I couldn’t say how, but I knew it was different. I was having a hard time focusing too. Muddy thoughts, muddy feelings, muddy existence. I struggled through the day, not feeling myself at all. The Wife got clearance from her heart surgeon so that she could drive herself to her appointment on Friday, just in case; and indeed I was hardly capable of driving on Friday when I woke up. I did manage to get to McDonald’s and back for breakfast, but the habit of ordering coffee with my morning cheeseless McMuffin that I had developed over the course of the few months I had spent chauffeuring the Wife to her rehab appointments finally bit back, and the caffeine from the coffee started up another round of vertigo that lasted into Saturday.
Brain fog on Saturday. Brain fog on Sunday. Barely able to discern what it was I was thinking at any given moment. On the upside, my re-emerged symptoms gave me time to play World of Warcraft for the first time in over a month; but on the downside none of the many other things that I had been putting off for months seemed possible. I was finally able to do some technical work late Sunday night, but that just exposed me to one of my known allergic reactions (dust) which then triggered symptoms again.
At my Monday ENT appointment the audiologist determined that I had lost another 10% of hearing from my left ear. Had it been the right ear, I would have let them give me an intratympanic injection of steroids to try to preserve the hearing. My right ear is my only remaining connection to the normal hearing world. The left ear losing another 10% puts it just under half as effective as a normal ear. Not enough to worry about, from my perspective. I went home with a prescription for oral steroids, which I don’t intend to take.
There is a new weather front rolling into Austin as I type this. I can feel my thoughts slowly draining away as the pressure changes and my tinnitus worsens. It’s time to leash the dog and go for a walk before the storm hits. Maybe I’ll watch a familiar movie or play some more Warcraft tonight. It will be something to look forward to at least. There doesn’t appear to be a lot of writing or thinking for me in the near future.
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.
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.
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.
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!
Postscript
Someone was talking up virtual reality vestibular therapy on r/Meniere’s recently. I’ve seen these systems in place and used them a few times. They weren’t VR googles, which can have time lags that cause vertigo themselves, but were half-domes set on edge and used as projection screens that you stood inside of. The therapists had me walking through a shopping experience once, which was giving me agoraphobia at the time.
I have also done VR googles and vestibular tests and exercises. I really can’t attest to an amazing efficacy or perception changes for any of these systems, though. If there were changes they were so subtle that I never noticed them.
I feel good for long stretches of time. Then I feel out of sorts for long stretches of time interspersed with days of vertigo and ear pressure. I still can’t figure out what is causing my symptoms, but at least they aren’t all the time these days.
What has helped me the most? Disability, CPAP, Betahistine & Xanax. In that order in time and magnitude, pretty much. Those are the things that made the most difference, vertigo-wise. Disability removed the daily stress. CPAP allowed me to finally get good sleep, and I could afford to have it because of the disability finding and Medicare. Better sleep meant better, clearer thinking, which led to trialing the various non-invasive treatments, which led to finding Betahistine and Xanax as effective treatments. I haven’t had to suffer through a full day of vertigo in years because of the Xanax and Betahistine.
The vestibular physical therapy, and just basic physical therapy exercises, have made it easier and safer for me to get around, don’t get me wrong. I like not having bruises all over from running into things or falling down, but in the scheme of my life that comes after all the other stuff I listed. They do help me feel normal, but I also know that normality is a delusion that we humans feed ourselves at our own peril.
…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.
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.
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.
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.
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.
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.
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.
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.
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.
