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.
On Tuesday I started feeling the effects of an oncoming attack, but I was determined to raid with my group in World of Warcraft as scheduled. We managed to do our average best, although we didn’t clear the entire heroic level of Azshara’s palace the first night. On Wednesday I felt worse. The start of a two-day migraine set in, a knot of pain right in the center of my skull. I did manage to show up and raid again that day, but I wasn’t my best and it showed. Thursday the pain was so bad that I sat in the library with no lights on for the entire day, wishing the pain would go away. Even the monitor for the laptop set to the lowest light setting was bright enough to cause stabbing pain, so I just sat there listening to podcasts wishing I could do something else.
On Friday night the vertigo started. It was pretty mild, compared to vertigo attacks of the past. No projectile vomiting. No lying on the bathroom floor. The room would start spinning, and then I would re-orient myself by staring at a point on the wall for ten minutes or so. When I went to bed the vertigo was so bad and persistent that I couldn’t sleep, and I couldn’t focus on a point in the dark. So I took a valium and finally fell asleep. On Saturday the vertigo could not be dispelled any longer. No amount of re-orientation would make it stop, and I was beginning to get nauseous. Time for the Xanax, which I stayed on for the entire day and through most of Sunday morning.
I woke up about an hour ago. I feel dizzy now. Dizzy, not vertiginous. The lights are still too bright but they don’t hurt like they did Wednesday. I’ve got to go visit my ENT on Tuesday to get a refill on my Betahistine anyway, so at least I’ll have some symptomatic stuff to talk with her about while I’m there. I’m going to try the vestibular exercises that my physical therapist gave me as soon as I publish this. I tried them on Friday when the vertigo started and they just made things worse. Fingers crossed.
I’m in a sleep study tonight. I’m fighting with the mask because it’s making the fart noise. CPAP users will know what I’m talking about. I remembered that I’ve been doing this a lot lately. Fighting with the mask causes me to roll over. Back and forth. I think to myself it’s all in how you hold your mouth.
That explains everything. Everything that doesn’t want to work in life even though it should. It’s all in how you hold your mouth. Miskeys. Plotting errors. Gaming errors. Automobile maintenance. Using any kind of mechanical device.
It’s all in how you hold your mouth.
Man I could use a drink right now I think. My mouth is as dry as a bone. My tongue feels like sandpaper on the roof of my dry mouth. I can’t have a drink though, because my CPAP mask is on.
Oh right. Nasal mask. The nurse asked me if I wanted to change masks before I started this night of sleep testing. Maybe I should try a nasal mask. Then how I hold my mouth may not be that much of a problem anymore. At least, when it comes to sleeping with my CPAP mask on it won’t be. When I’m button-mashing while playing a video game, it’s still going to be important. I have chin straps for making sure the mouth is closed when I’m wearing the mask. I don’t need to have the mouth covered with the mask.
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.
I missed raiding again tonight. Thunderstorms started rolling through Austin at about 5:30 pm and persisted until about 7:00 pm. After the first flicker of the house power during a storm we tend to turn all the electronics off. We turn them off and wait until the storm has passed. This is how we’ve approached dealing with power surges in Austin Energy’s lines ever since we lost electronics a number of years ago to a lightning strike that hit a transformer in the neighborhood.
But it wasn’t just the fact that I would have had to reboot the computer and do updates in a few short minutes that kept me from raiding tonight. I’ve been uncoordinated all day. Dropping things, knocking things off the counter that I knew were there and thought I would miss. Just a general sense of dizziness and disorientation that had me wondering if I would make it to raid tonight or not. When the thunder started rolling and the lights started flickering, I not only knew I would probably miss raiding tonight, but I knew that the reason I was feeling so unstable was the atmospheric pressure had changed with the storm front moving through, and that was probably why I was feeling so dizzy. This happens pretty reliably. I’ve tried tracking the barometric pressure in the past, but it doesn’t seem to be highs or lows that are the trigger, but the simple fact that the pressure changes rapidly.
When I went to do the new vestibular exercises that my physical therapist has me trying out, I could not do one of them properly, and this is the first time I’ve had this problem since starting the exercises. I can’t find any Youtube videos that replicate the exercise that was was given to me, the specific exercise that I’m having trouble with today. However, this video illustrates the basic mechanics.
I use my thumbs, and I close my eyes after centering on the target. Then I’m supposed to move my eyes to where I think the other thumb is and then open them again. If I’ve missed the second target I’m supposed to focus on the correct position, recenter, and then close my eyes again before moving my eyes back to where the first target was, repeating as many times as I think necessary.
I could not find the second target today. Dozens of repetitions and the target is never where I think it should be. Never happened before. I started doing this exercise a few weeks ago, and when my physical therapist showed me this exercise I was thinking I don’t need to do this, I know where my thumbs are. Using peripheral vision, I’ve managed to track back and forth between the two targets without a hitch every time I’ve tried the exercise. Then today, I open my eyes and I’m not looking where I thought I was.
I have the explanation for why I’ve been such a clutz all day now. It just doesn’t make me feel better knowing what the problem is. I’m going to have to do a better job of doing the exercises as often as needed and not just when I think I’m having a problem. At least the dizziness didn’t progress into a full-blown vertigo attack today.
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.
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.
Being depressed is the natural side effect of having a bystander to my own existence perspective on life. How can you take an active interest in something that you are merely a witness to? If that something is your own life? I don’t even know how to describe depression, as I experience it. It is a kind of a funk that clouds up every decision, making even basic self-care hard to achieve.
“The opposite of depression is not happiness, but vitality.”
As Andrew Solomon points out at about the halfway mark in the TED talk above, depression isn’t something that one easily admits to having, even to the people you are closest to. It is perceived as weakness, and one never wants to be seen as weak by others.
But depression isn’t a sign of weakness. It is a signal of despair. A loss of hope. An individual’s response to external or internal conditions that are beyond the control of the individual. Depression is not the fault of the sufferer, but ending depression does require action on the part of the sufferer.
One thing about depression is that it makes it really difficult to access the parts of your life that are genuinely good. For some people, this takes the form of anhedonia–losing pleasure or interest in things you used to enjoy. Not necessarily completely or all of the things, but sometimes completely and all of the things. For some people, this can mean that watching their favorite show or playing their favorite game is suddenly not fun anymore. For some, it can mean that trying to socialize with their good friends feels like reading a really boring story and not being able to actually interact with the story in any way. For others, it can mean not perceiving food as tasty anymore.
Losing my interest in almost everything I ever cared about seems to be a huge part of depression for me. The problem is that most of what I was interested in is now different in experience on the one hand (music is muffled or tinny because of hearing loss) or causes stress, bringing on vertigo (just thinking about CAD or Architecture) and so should be avoided. Even my love of creative writing is subject to this intermittent destroyer of hope. This article, for example. I started it five years ago and then abandoned it for no good reason. Why? I don’t want to talk about my depression, also something that Andrew Solomon points out.
For many people, depression causes a pervasive sense of disconnection from the world and from other people. When I’m having a depressive episode, I feel like I’m not part of anything, like I’m just one person and I don’t matter, like I could disappear and nothing would even change, etc. I feel like there’s a glass wall between me and everyone else. I feel like I can’t do “normal” things like laugh at a sitcom or make someone happy or fall in love. I feel like an alien sent here to try to learn how to act like a human being only I’m completely failing.
I have always been disconnected from the world. I have always held myself apart from the crowd. I never wanted to fit in. I never wanted to join a group or a movement. I was like Greta Thunberg as a teenager, just not as motivated as she is. Had I been born in the last decade, with all this information at my fingertips, I’d like to think that I would have acted as she has. But I don’t know. I’d like to think I’d accept the findings of science on climate change, from the perspective that I now occupy, that of a skeptical rationalist and freethinker. But I could just as easily have been hoodwinked by the fakirs who ply the edges of society today looking to preserve their fossil fuel profits. Once you start shutting out legitimate sources of information, it is a short trip to fantasyland from there.
But because I never tried to fit in, never identified with a larger group aside from the work that I did for a living, being alone in the universe wasn’t something I was frightened of. Wasn’t something I could feel depression from perceiving. Being alone in the universe was the nature of existence for me. I am an alien sent here to try to fit in. Failure was a given, on many fronts.
When the Wife started to become disabled, though, that was a different story. I started to see how people (normal people) build up bulwarks of social interaction that kept them engaged with others. How losing the ability to interact with people on a daily basis was in itself enough to cause depression for some (most) people. I don’t pretend to understand this necessity of social bonding that most people feel. I just know that it is crucial for them, and that losing it is tantamount to becoming irrelevant to the world.
I’m truly am happy, generally, just sitting alone in my office typing away. I’m creating something. Hopefully someone will find it interesting enough to keep reading it. Perhaps that is my point of connection with the rest of humanity, through the written word. That makes sense. Reading has always made me feel more alive than anything else has through my long life. To create narratives for others to read? That is contributing to the social interactions that keep this crazy bus of human existence on the road. Writing is bigger than any one person, by its very nature.
So for me, the most helpful thing that someone can do is to help bring me back into connection with others. This is why I find venting mostly useless. When I’m venting, I’m still only talking about my depression, and while the person I’m venting to may be very kind and a very good listener, this isn’t something we can connect over, you know? It’s not the same as a two-sided conversation about difficulties we’ve dealt with in our lives. It’s totally one-sided. It’s just me, talking about the exact thing I need to learn how to stop ruminating over.
Both the Wife and I seem to dig deeper holes these days, when the depression is talking. When two depressives argue. When we met, I was Mister Sunshine. I had been depressed for most of my teenage years, the results of abuse and neglect, and a complete inability of existing social structures to deal with someone with my unique set of challenges. When I got out on my own, I had a plan of action. I knew what I was going to be doing with my life. I was going to be drawing architecture, creating a sense of permanence for other people through structures that were well designed and well documented. I was convinced that I could change the world, not be the sad person I had been when I was younger. I had a plan and I was going to make it happen.
Then I couldn’t do that anymore, and the guy with the plan suddenly didn’t have any plans anymore and also had no idea how to dig himself out of the hole that Meniere’s had put him in. Which is still the hole I’m in now.
The Wife might argue that the Mr. Sunshine image of myself that I painted above is bullshit, and she probably will argue about it (I predict that she will also have a valid point) But in our relationship I could at least pretend to be the Mr. Sunshine to her Little Rain Cloud, at least when she was in her depressive phase. A favor she would reciprocate for me when I would go depressive as well. We both had our cycles (as does everyone. Even you, dear reader) and I always had a plan to fall back on. Until I didn’t. Now we’re both depressed for large segments of time together, and that is a recipe for disaster. Disaster that we both have to actively work to avoid on a regular basis.
Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring.
Everyone else can say those things too, but only to people in larger rings.
A hat/tip is due to the blog Meniere’s and Me for bringing this finding to my attention. The Wife has called me her human barometer since I was first diagnosed with Meniere’s. I try to laugh with her when she says it.
I had the weirdest dream last night. When I’m having dizzy spells like I’ve been having all summer, I tend to have really strange dreams, and this one was a doozy.
I was in my maternal grandmother’s house. It was exactly how I remembered it. The lime green living room walls. The floral patterned couches that I used to lay on and trace the patterns with my fingers. When I looked up I noticed that grandmother was crying. I asked her what was wrong? Why was she so upset.
“I’m sorry Tony. We left you a world that was so broken and we never knew how badly we had broken it.”
I tried to comfort her. I got her to sit down and I hugged her. But I was only a small boy and so my arms wouldn’t go around her. I couldn’t reach her shoulder to rub it consolingly. I’m thinking to myself “why is she so huge? I’m not a child anymore.” and then I woke up. weird dream.
I’d like to think I won’t owe my children an apology for the world we leave them. Hope springs eternal.
The thing I’m most allergic to is household dust. Household dust? How are you supposed to survive when the thing your body generates every time you move is something that could potentially cause a severe allergic reaction?
Yesterday I was looking for something in the pantry. When I went to move stuff around in there, I noticed the floor probably hadn’t been swept under the shelving units for at least ten years or so. So I did what any normal person would do, I pulled the shelves out and started cleaning.
Then I noticed the dust billowing up off the floor. Crap! So I retreated and got my allergy medication taken, then got back to work finishing the task. When I went upstairs later to do the cardiac exercises that I’m supposed to do 3 to 5 times a week, I realized that I was rapidly starting to feel worse, even having taken a full course of allergy meds. Headache, dizziness, periods of light vertigo.
So it was time to break out the Xanax and then rinse my sinuses and wash the outside of my body to get all the remaining dust off. Then I had a bowl of chicken soup and went to bed early. Sixteen hours later I wake up. Still dizzy, still light vertigo, still pissed about all of the above.
Someone has to clean the house, and if that cleaning stirs up dust, that person cannot be me unless I’m wearing top of the line filtration gear. This needing to do things that I really shouldn’t be doing is going to drive me stark raving mad here soon. I wish I could afford to hire a maid. At least I’m getting better at writing while suffering from brain fog. Progress? Maybe.
Editors note: July 30, 2019. First day without near-active vertigo , constant dizziness, since writing this post. I went to the ENT yesterday. She couldn’t help me, but at least I know it isn’t an infection, or benign paroxysmal positional vertigo (treatment for which is mentioned here) it must be allergies or this is the way the destruction of my inner ear mechanisms occurs while I’m taking Betahistine.
…and today I feel great. For the first time in at least two weeks. Time to go make myself sweat doing the cardio I couldn’t do while nearly puking or stumbling off the treadmill. Fun!
Then four days later (approx.) the same dizziness returns. I have no idea what is causing this, and I hate just saying “Meniere’s” and forgetting it. That is how mild symptoms turn into buses that run over you.