Then there was the effect of Christian Science on my family. I’ve struggled with where and when to mention this little gem of understanding, because mentioning it is fraught with tons of angst and potential explosive feedback. But understanding how I got to 40 without a diagnosis of Meniere’s, how I’ve never been diagnosed with dysgraphia even though I have had all the symptoms of it for the entirety of my life is a direct result of my mother’s early childhood indoctrination into Christian Science. Because of this fact, Christian Science has to be discussed here as part of this story.
Christian Scientists aren’t scientists; they pray to Jesus to cure what ails them. Jesus is their science, and they exercise their science in prayer rooms across the US. They still do this all across America to this day. When a child dies from lack of medical care, and the state where that child dies cannot prosecute the child’s parents, the law that allows this was lobbied for by the followers of Mary Baker Eddy, the founder of Christian Science. My mom and her immediate family were members of this belief.
Her distrust of doctors and medicine lead directly to her demise February 9, 2018. One of the mantras she took to her grave was doctors don’t know anything. It was her most repeated comment over the last months of her life, as doctor after doctor told her she had cancer and needed chemotherapy. You couldn’t dissuade her of this or pretty much anything else she believed at any point in her life.
This is a hallmark of most of humanity, I have come to find out. If you think you can change the average person’s mind you simply don’t know what you are thinking. People survive as long as they do by believing things, and sticking to those beliefs. My mother survived to the age of 77 and raised four children to adulthood based on her doing exactly what she deemed best at the time, and you won’t convince someone who has lived successfully by their own judgement for 70 years and more that what they believe is wrong. So give that idea up now and save yourself the life-shortening frustration.
Christian Science. If you are a Christian Scientist you don’t take drugs. You don’t see doctors, and if that religious upbringing was all there was to my mother’s belief, I think she would probably have gotten over it eventually. However, over the course of her life she has been nearly killed by well-meaning doctors more than once. All her life she’d been told gibberish by people who didn’t have the sense to pour piss out of a boot with directions written on the bottom (not that she would ever utter such a low phrase. In her estimation) so she knew that people believed insane things and discounted what other people told her almost by rote. She knew what she knew, but that left her vulnerable to the things she thought she knows but was wrong about.
Mom knew the value of modern medicine and never hesitated to get me antibiotics to treat the frequent illnesses that I had as a child, but she never stopped believing that doctors were pulling a scam on the sick. It all had to be a scam, somehow. She was never clear on how or why, but it was a scam, she was sure of it.
She never stopped believing that people would get better on their own if they just lived a better life, ate better food, got the right kind of nutrition. It was the failure of this belief, that healthy living was all you needed to keep from getting cancer that killed her a decade early. Had she not had encounters with believing doctors who proposed treatments that proved near-fatal, treatments that were fatal to her mother. Treatments that decreased the quality of life for the patients she tended. Patients that died anyway. Had she not watched time and again as things were labeled bad be relabeled good with more study and more time. Had she had different experiences with the medical community, she might have said yes to the promising new treatment the doctors wanted to try. The same treatment that saved president Carter’s life. But she didn’t have those experiences, and so she didn’t get to live that extra decade.
I woke up dizzy Monday. Dizzy, not vertiginous. With vertigo, the world spins. Or rather, with rotational vertigo, the world spins, generally in a horizontal direction (don’t ask me which way, because my brain will lock up) I took a bunch of drugs trying to make it better. Nothing made it better. Dizziness is (as I’ve said elsewhere) the most common complaint that doctors hear. It means completely different things to different people. This dizziness is a feeling of being on the verge of falling/fainting, pretty much with every step.
Tuesday I woke up, dizzy again. This time dizzy and with chest congestion. I had taken the CPAP mask off to answer the phone, and simply neglected to put it back on at about 8 am (trying to schedule appointments with mundanes means being clear and attempting to be coherent at 8 am when they return calls) so when I finally got out of bed at noon, I had a nice wheeze going and a tickle in the middle of my chest. Needless to say, I took a round of allergy drugs and my regular daily medications, put the mask back on and went back to sleep.
When I woke back up again, the tickle was gone, the dizziness was lessened and I wondered about the cause of the dizziness since the mask filters all my breathing air. I tried wearing a particulate mask around the house for awhile and that seemed to help, but then I had to talk on Discord for the guild raid that night, and the tickle and congestion returned.
Funny thing is, I can stick my finger in my left ear and trigger the inside out vision for a brief second or two. It makes the dizziness much worse, to the point of almost blacking out. The right ear, even though I have bilateral (both ears) Meniere’s, does nothing to my equilibrium. That is a puzzle.
Allergies? Barometric pressure? Meniere’s flaring up? I don’t think it’s the latter because the dizziness is wrong. I’ve already gone to the ENT once this month, so I’m visiting the GP today to see if it’s something he can figure out. If not it’s back to the ENT for another needle in the ear and the nasty taste of drugs in the back of my throat for two weeks. Fun. Fun. Fun.
…I mention all of this because I decided that this week was the week to try communicating with people, and I can tell that my writing is less than coherent. I’m hoping the above was coherent. Who knows? I won’t for at least a week. Also, I’m in the middle of reorganizing my website and my blog, as well as revisiting the wisdom of my presence on several social platforms and I will be leaving more than one of them, permanently. So I’m largely incommunicado and unwilling to compose text in my normal fashion because that has lead to a lot of time wasted trying to recover lost work when things go sideways. (see my last post) and what little conversation I am required to engage in is probably incoherent to at least one side of the conversation. Maybe even both. I’d really like to get away from the problems that started back in mid-August. This is getting old. Really old.
11/8/18 – The spell finally seems to be passing, but the complete lack of change in the body politic of Texas has me in such a funk that I doubt I’ll be writing much of anything positive for awhile still. I have a few cutting polemics in mind, but the better angels of my nature may keep me from ever publishing them here. On the other hand, I’m about to go off on relatives on Facebook again, so the inner troll may also get access to the keyboard here. Stay tuned.
First things first. Get an editor that won’t eat my drafts while I’m composing. When I get that all worked out, I will certainly write about that process. Writing about it is part of the process.
What happens on September 22nd? I think to myself as I start looking through today’s history on Facebook. It’s bugging me. This day is important. There is an event that occurs today, what is it?
Obviously, it is the equinox. It took a bit of googling to turn the lights on, but finally, I had my answer. That is the significance of September 22nd. Equinox. Equal amounts of day and night across the globe.
Most years, this happens on either Sept. 22 or 23. However, every once in a while, the autumn equinox can occur on Sept. 21 or 24. This happens because the length of a calendar year (365 days) is not equal to the time it takes for Earth to travel around the sun (365.25 days). To make up for this inconsistency, people have observed “leap years” for the last two millennia. By adding a “leap day” (Feb. 29) to the calendar every four years, we have managed to keep our seasons more or less consistent from year to year.
The last time the autumnal equinox fell on Sept. 21 was over a thousand years ago, and the last Sept. 24 equinox was in 1931, according to timeanddate.com. While it’s been a long time since the equinox occurred on Sept. 21, we can expect to see it happen twice in the next century, first in 2092 and then in 2096. The next Sept. 24 equinox will be in the year 2303. (Keep in mind that these dates are based on Universal Time, so some time zones may not experience these equinoxes on the dates listed here.)
Equinox. Equilibrium. Balance. I’ve been feeling pretty unequal for about a month now. Unbalanced. The Meniere’s has been particularly burdensome since sometime in mid-august when the left ear started to flare up again. There has been a near-constant feeling of pressure in the ear for the last month. The pressure started a bit early this year for me, and it has lasted longer and been more annoying. But then this is the beginning of fall and it’s accompanying seasonal allergies. I just got my annual symptoms a little early this year, I guess.
Along with the pressure have been long bouts of hyperacusis and/or painful tinnitus. I can’t hear, I’m uncomfortable, I feel ill as if I have an infection. I went to the ENT yesterday just to reassure myself that I wasn’t actually ill. Nope. Not ill, just Meniere’s. This feeling of malaise has lasted for a solid month, almost without respite.
Which is why there is a dog hugging a goat at the top of this post. Denied physical balance I will seek mental balance. Calmness where I can find it. Lacking medical treatment to alleviate the symptoms of Meniere’s, I will simply endure it for as long as it takes. I see a lot of World of Warcraft in my future.
So I woke up this afternoon with vertigo again. This is the third day in a row (10/22/2018) I have woken up with rotational vertigo. The third day in a row where I wake up and quickly drug myself. Take meclizine. Add Xanax if necessary. Stare at the screen in front of me for hours at a time. Try not to shift the focus of my vision because that always causes a little bit of spin until the new focus point is established. Lovely. Just lovely. This bout of vertigo is just the latest part of the symptomatic spell that started mid-August for me. This makes it a pretty solid two months of being severely symptomatic.
The vertigo spell finally ended on Wednesday the 25th. I celebrated by getting out of the house for the first time in a week and treating myself to an All Star Special at the Waffle House. Since Austin has established a Boil-Water Mandate in response to the record breaking rainfall on the Llano Estacado, and the subsequent flooding of the highland lakes including Lake Travis, the lake that provides Austin’s water, the choice of places to go was rather limited. When a restaurant can’t use the water that comes out of the taps to make the food they sell, most restaurants will simply close when there is no visible demand for their services.
But the Waffle House is always open if they can turn the lights on and fire up the griddle. That is why there is a Waffle House index for disasters. It was a yellow day, plastic tableware and a limited menu, but I would have gone to the Waffle House anyway. Love the coffee, even if it has to be decaf these days. I have to have hashbrowns and eggs over easy, too. My goto breakfast for those days when just waking up is a good thing.
Being symptomatic, when you have a chronic illness like Meniere’s, is not a contest to be won. You don’t get brownie points for suffering more than the next guy, because the next guy’s goal is the same as yours. That goal is getting through the bad days so that you can enjoy the good ones. If your good days don’t happen often enough, maybe you should change the things you are doing, or the treatments you are using, and see if you can’t get yourself more good days. Since there is no cure, and you won’t die from it (ergo chronic illness) the only metric available to you is the number of days in a row where you wake up glad to still be here. Today was one of those days. I had waffles, and I got out of the house. Looking forward to the next good day, now. If only the pressure in the left ear would ease off. That would be great.
So I’m finally feeling almost normal after our trip to Chicago. The day after we returned home, the sore throat that had been bugging me in Illinois turned into a full-blown sinus infection complete with glaring red pink-eye. This prompted a hasty trip to my immunologist and a series of antibiotics. I finished the ten day course of antibiotics on Wednesday, and had my first physical therapy session in three weeks on Thursday. I was bushed after the PT, but that was only part of the problems that surfaced this week.
Monday morning was the follow-up for the 90 day Betahistine (Serc) test that my ENT and I had been running. The results looked promising, and so I’m going to try upping the dose for a year and see what that gets me in the way of relief from Meniere’s symptoms. I’ve noticed that I seem to start exhibiting symptoms again before the next dose of Betahistine is due, so I’m going to take the same dosage three times a day. If you are a Meniere’s sufferer and you have triggers similar to mine, you probably should get your ENT to trial you on Betahistine and see if it helps you or not. I am curious to know if there is a sub-group of Menierians who benefit more from Betahistine than others. This data would clarify whether there is a benefit to Betahistine treatment or not. Comments on this subject are not only welcome but I’ll beg for them if I have to.
I’m feeling better, I thought. I should have known this was a prequel to the hell life had in store for me later in the week. On Wednesday the air conditioning dropped dead on us. It had been acting a little squirrely for awhile now and the system is nineteen years old. Several times over the last few years I had noticed that the thermostat didn’t seem to control the system like it should. It would sporadically fail to come on when it got too hot in the house, and would fail to turn off when it got cold. Sometimes the interior spaces got chilly enough that I thought seriously about wearing more clothing. On Monday, the system’s lackluster cooling performance lead me to do some basic troubleshooting and I noticed that it was well past time for a filter change. Changing the filter did seem to improve cooling and airflow, but Tuesday evening the fan wouldn’t start if we set the thermostat to cool, and Wednesday the fan said fuck it, I’m outta here and refused to start in any position. On or auto. Heat, cool or off. No dice and no air conditioning.
Ah, Texas in the summertime with no air conditioning! Back in the days before that invention every building in the region had ten or twelve foot ceilings and floor to ceiling windows that allowed cool air to enter the building from the lower sash, while simultaneously allowing the heat to escape the building from the upper sash (this is the origin of the term double-hung for the architecturally curious. Windows which can be opened from both top and bottom) and even then you slept outside on what was referred to as a sleeping porch because it was too hot to sleep indoors at all. Air conditioning changed architecture radically and not necessarily for the better. With the ability to alter indoor temperatures builders could ignore long-held rules of thumb that governed Southern construction, putting large glass facades on South-facing walls and lowering ceilings to the now-common eight foot height. Which is all just fine, as long as the air conditioning works.
So we called our handyman, but he was out of town for a week. Deeming it time to bite the bullet, we called a contractor we have dealt with successfully before, and they sent a guy out on Friday. Based on his estimation we had to replace parts just to see if the system could be revived or not. I’ve been down this road a few times. Replacing one part leads to replacing another part, which leads to replacing a third part until at some point you’ve rebuilt the entire system. As I mentioned previously, it’s a nineteen year old system. I can’t even get refrigerant for it anymore, legally. Spending money on this dinosaur is throwing good money after bad.
The heat and the humidity were threatening to send me spiraling back down into vertigo hell, but the salesman (comfort adviser) who showed up to pitch us on a new system came bearing gifts of window units. Consequently we were open to the idea of looking into replacing the ancient HVAC system. This was a theoretical possibility on Friday, a possibility that is rapidly gelling into a reality for Monday. So I’m taking this opportunity to start some renovations of my own that I’ve been wanting to get done since the first day we toured the place before buying it.
I won’t be raising the floor in the former garage yet, that project is a bit too ambitious even if it is desperately needed. The attic fan that has hulked above my head every time I climb the stairs is going away though. I’ve wanted that thing gone from the time we moved in. I can’t use it. It draws outside air into the house unfiltered. Everything outside wants to kill me with allergies. The last thing I need is something that pulls even more allergens into my breathing space. The window units alone are making my symptoms worse, I can feel vertigo perched above my head like an unwelcome avian visitor. Removing the attic fan means the upstairs HVAC will finally be properly balanced without the thing taking up attic real estate and letting attic heat into the living space.
Who knows, maybe other repairs and modification are following fast on the heels of the new HVAC system? Hope springs eternal, even for those cursed with chronic illness.
Then, methought, the air grew denser, perfumed from an unseen censer Swung by Seraphim whose foot-falls tinkled on the tufted floor. “Wretch,” I cried, “thy God hath lent thee—by these angels he hath sent thee Respite—respite and nepenthe from thy memories of Lenore; Quaff, oh quaff this kind nepenthe and forget this lost Lenore!” Quoth the Raven “Nevermore.” – Edgar Allan Poe
I got what I wanted out of the project, but it took a herculean effort to get it done. A lot more work than it should have been just to get satisfaction out of the project. I wanted the Wife to try her hand at managing a construction renovation with outside contractors, she’s been dabbling in renovations with some of her starving artists and actors as hired hands. Not making money, not enough to talk about anyway, but being productive and getting things done for friends. So I let her supervise. We picked the contractor, made sure what we wanted was in writing before work began, and waited for the work to start.
As the saying goes no plan survives first contact with the enemy, the enemy in this case being the existing broken HVAC system, and that pretty much sums up how this project went. The HVAC crew showed up, punched holes in every surface available, or so it seemed, and I did my best to calm the Wife down. Holes in sheetrock make dollar signs roll across her eyelids in a frightening hurry. They did seem to be punching a lot of holes. A lot more holes than I probably would have, but then that’s me. I knew they’d have to patch the holes they made, eventually.
The upstairs system was replaced first. The Daughter and Son were planning on staying in the house through the entire construction process, so their A/C had to be in place as soon as possible. The contractor refused, however, to remove the attic fan. While we had discussed it, he said he would not actually do the work of removing it. So we got some of the hands that the Wife has worked with before to get the giant thing out of the ceiling over the stairs and then put a sheetrock patch up to cover the gaping hole sixteen feet in the air. Twenty year goal finally achieved! With that out of the way, the rest of the upstairs was finished in a day or so (or so we thought) and the contractor moved on to the bigger project, getting the downstairs system updated.
The downstairs system had to be completely removed. This was the agreement before the contractor was signed on. Little did I know just how involved removing the system was going to be. I had wondered to myself for the better part of twenty years just where all the ductwork was hidden in this house. That was a question that was quickly answered for me. It was hidden in the kitchen ceiling. Hidden in the bedroom ceiling. It was clear from the planning stages onward that I was not going to be able to stay in the house with the ongoing construction, this was the second reason the Wife was supervising. I was dizzy within minutes of this phase of the work starting. So we left to find the first of several long-stay hotels that have popped up in the last decade around Austin, while the crew continued to gut the interior of our house.
The HVAC system itself went in pretty quickly. The vertical unit and it’s closet would be removed, the closet abandoned and used for storage, with a new horizontal unit located over the master bedroom, closer to where air conditioning should be in the first place. After the HVAC crew worked out how to get A/C to the now remote rooms in the structure, back where the old unit was, it became relatively short work to get the new ducts in place. That was when the real fun started. The plumbing crew arrived.
We have gas heat, gas water heater, gas stove. I like gas heat. I like cooking with gas. I like not paying for electric heat. I like not burning food with electric burners. We rarely need heat around here, but when you do need it, it’s a requirement. Gas heat requires plumbers and black iron piping, and even more holes in the ceiling. The two plumbers that we ended up with from the four or five who showed up before they were needed could have just as well been the one apprentice. He did most of the work, and he was the more agreeable of the two to start with. The plumber he was helping refused to go up in attic spaces and so consequently required the additional large holes in the ceiling everywhere he needed to work, and they didn’t bother to cover anything before dropping attic insulation, sheetrock dust and plumbing pooky all over everything underneath them. They even made holes that they really didn’t need, in hindsight, after it became clear where they were going to have to run the gas line from and managed to leave the gas turned off to the other appliances for several days in the process.
The upstairs furnace was the last piece of the puzzle to be solved, even though we planned for it to be done first. The gas line spirals it’s way through this house like water in an Escher print. It shouldn’t go where it goes, and it doesn’t make any sense for it to go there, but it does. Why it is where it is doesn’t matter as much as how to attach to it does, and cutting the line where I wanted it cut would have been several thousand more dollars, probably.
Just getting them to tell me where the gas line came from outside the house to where the A/C system had been before we moved it took several days of hounding. When I finally got an explanation, it was from the master plumber for the contractor. And it only took about ten minutes of talking to him to figure out why the plumber who was assigned to our job was uncommunicative. The master plumber? I’m pretty sure he thought he was god himself. Once we got the misunderstanding about the gas line straightened out and agreed on the plan to get gas to the new systems, he demanded that he be compensated on the spot. He had to come out here, we needed to pay him. He had people he paid to do this kind of work. His appearance on the job meant we owed him money.
He left muttering threats under his breath, without his demanded payment, and no payment would be forthcoming unless it came from his bosses in the company. You want to be paid on a separate contract? Work from a separate contract. This isn’t rocket science. But we did get the gas hooked up, finally.
From July 31st to August 14th we lived out of a slowly rotating group of hotel rooms. I was able to stay at the hotel I wanted for my birthday, at least. I even got to swim in the pool, watch a pay-per-view and get drunk in my own hotel room. The cost of this disaster set us back several thousand dollars, but there are many things that you discover a way to pay for if you really need it to survive. I survived, otherwise I wouldn’t be here to write this all down. But two weeks was twice as long as the project was slated to take, and the cost could have been much higher if the contractor had felt like billing me for all the extra work they made for themselves to do. After the confrontation with the plumbers and the damage to property created by their ham-handed attempts to get the gas line to the new system, the contractor decided that they would just stick with the agreed upon price and call it even.
The destruction of the interior of our house was corrected, just like I knew it would be. The new finishes are better than the ones they replaced. The new paint a better color than what was there originally. Best of all? The stairs are no longer a trip through the bowels of hell. The heat in that area is no longer fed through a grill that lead straight to unconditioned attic space. The bedrooms are (as they should be) the coldest rooms in the house for the first time in twenty years. I can still hear the TV when the A/C fan is running, and that is a major improvement.
I just wish that the confrontation with the plumbers had not been fated to happen. I really like everything about this contractor and would unhesitatingly recommend them to anyone; IF. If. If they don’t need any plumbing work. HVAC work? They do a great job. The comfort adviser who set everything up was an asset that kept the work going in spite of the trouble the plumbing crew caused. But the plumbers? I wouldn’t use them again if you paid me. I have a plumber already, thanks. He’s gruff and speaks plainly and I get straight talk out of him without having to drag it kicking and screaming into the light. That’s the way I want it. Tell me what the problem is. Tell me what the solution is. Tell me what the cost is. I don’t shoot messengers that bring me bad news. That is what twenty years in architecture taught me. You want the bad news as soon as it is known, because that is how you fix the problem faster and more cheaply. Punishing the messenger is how you end up spending more money. The contractor should have listened to the plumbing apprentice on my project. Should have trusted the HVAC crew when they related the problem. Any of their hands could have told them what the problem was four days earlier in the process. Instead I had to get the information third-hand from the plumber’s boss, who quite literally only made things that much worse. So I can’t sing praises for the company which will remain nameless. Because they don’t deserve blame, either. We were made whole and the systems work better than they ever have.
Now to get on with the other projects in the house. Fixing the Master Bathroom which hasn’t functioned for ten years. Raising the floor in the Master Bedroom. You know, the little things.
I reposted it today because of the events in Washington DC, where the congress and His Electoral Highness Donald J. Trump are trying to undo all the work done by President Obama. They are trying to repel the ACA which they nicknamed Obamacare specifically trying to denigrate his accomplishments and tar him with the failures of the policy they helped to shape. The ACA, deemed to be not going far enough by most Americans especially the ninety-nine percenters, and condemned as going too far by the most vocal minority segment (self-identified conservatives) of the electorate.
In what should have been an obvious if counter-intuitive turn, the same people who protested that Obama did not go far enough voted for what was popularly seen as the opposition party, the Republicans. However, what the Republicans are is the party that confined Obama to the minimum that he was able to do. What is now transpiring in Washington DC is what happens when fiscal conservatives who think they have a mandate propose doing exactly what the people who voted for them don’t want done. To the utter consternation of the public who doesn’t follow politics as maniacally as I do, the hardliners in the party think that this barbaric proposal they’ve dubbed the AHCA is not punishing enough. The hardliners want it to be more punishing on the poor, the sick and the disabled, the complete opposite of what the popular mandate was.
Candidate Trump in one of his only sane moments said he would protect Medicare and make sure that everyone had healthcare better than they did under Obamacare, the ACA. However, His Electoral Highness has also forgotten his own promises on the subject of healthcare in his efforts to rally the party that saw his stances of protecting Medicare and Social Security as being too liberal.
We now find ourselves caught in an example of the argumentum ad absurdum brought to life. The people who voted for one kind of change, people like the one in the image, discovering their representatives apparently do want to see them die in the streets after all. That the reason conservatives knew there were death panels in Obamacare was because they were planning on creating death panels themselves. Death panels staffed by health insurance insiders who want to protect their profits. I’d laugh at the absurdity of it, if only I weren’t so busy focusing on not giving in to vertigo.
When I stumbled across that image in my Facebook timeline for 2011, I was immediately struck by the notion that I could craft a similar statement. Mine would have to be computer printed like his because dysgraphia would make it take two days to write by hand. It would go something like this,
I worked for 30 years until my health failed me. Unable to sit or stand without pain or dizziness, move without assistance, constantly medicated, I faced a future where the only hope of seeing my family fed or for them to continue to have shelter was to apply for disability. The federal government refused to honor my claim for almost five years. They said I wasn’t really sick. They said I wasn’t an American. I had to proved that I was both before they would pay me anything even though I had faithfully paid my taxes for my entire life.
Now I must stay unemployed in order to keep my family fed and sheltered and keep my insurance, the only thing that allows me to live an almost normal life. In the meantime my wife and children do not qualify for aide because my disability payments amount to more income than is allowed for the poor to make and still qualify for benefits. I have better care with Medicare than any of them receive even though they live in my house and must subsist off of the meager payments the government provides for my disability.
I am the 99%
If you voted for Republicans in the last election what happens next to people like me, people like him, will be entirely your fault. Think about that the next time you are tempted to complain about your taxes, or to vote for people who promise to save you money by taking a lifeline away from other people. You could well be me one day. Probably will be.
While the current word is that the AHCA is dead, we should never forget that the hardest of the hardliners, the most conservative of the conservatives, the ludicrously named Freedom Caucus, refused to vote for it because it didn’t strip enough benefits from the poor, the sick and the disabled. Think about that the next time you go to vote.
I am currently on Medicare and having the least trouble I’ve ever had getting my health problems tended to. Sadly, becoming chronically ill appears to have improved my overall health. That is what making your health a non-commodity will do for you. Make you healthier.
How do you get past the “why can’t you do its?” the (groan) “really? If I have to, I will.” Why can’t they just understand my limitations?I feel guilty asking my family to help me.
I need to get out and do things, but I want to isolate myself from things that make me feel sicker. How can I do both?
I became a different person after disability and handicap. After not being able to do many of the things that defined who I was to me. For me. First it was losing the ability to engage in paying work. Then it was household chores; mowing the lawn, working in the yard, even most dusting and sweeping (dust and mold allergies are my main Meniere’s triggers aside from stress) I have been reduced to editorializing on life from the sanctity of my home office where I have reduced the distractions and triggers to a minimum.
I’m right there with you. I feel like I’m hiding and that is probably because I am. Hiding from my symptoms and their triggers. I don’t know if this is the right way to cope or not, but I’ll do what I have to do to get by, because that is the minimum standard I’ve set for myself.
I don’t know how you can communicate the limitations to the people around you. My wife and children are among the most supportive people I know and even they have to be reminded of my limitations sometimes. I suggest trying not to take the grumping about unwanted burdens placed on those around you as personal attacks. The people who pick you up and care for you are caught in this situation with you. They have every bit as much right to be frustrated as you do.
I recommend frequent hugs, myself. I find them very therapeutic for everyone involved.
If you have daily vertigo spells to the point that you feel nauseated, you are precisely the kind of sufferer that the more drastic procedures for treating Meniere’s symptoms are for. If the injections do not give you relief, you should talk to your doctors about other more invasive treatments. If the vertigo doesn’t stop, you may have to face some of those consequences to make it stop. Making it stop occurring constantly, daily or weekly, is what every treatment out there is for. Keep looking til you find what works.
Just as important is the need to get people who understand your illness around you to support you. You need to get the feeling of vertigo across to the people you rely on. How helpless you are. Short of making them OD on alcohol or strapping them to the centerpost of a merry-go-round (no, don’t do that. Try getting them to read this) I’m not sure that everyone will ‘get’ what the problem is. My wife has been there for me since the beginning. I’d be dead now without her. If they (husbands or wives) can’t be made to see reason, then you need to find someone you can rely on to be there when you need it. You leave them (husbands or wives) when you find someone who cares, when you find someone who can help you with this.
This is what chronic illness is. You can’t get through it alone, and unfortunately we, your fellow sufferers on the internet, can’t be there for you in that way. We can’t be there to mop up and change the sheets. Can’t help tend children or cook or clean. Most of us wish we could, some of us know we’d be more of a liability than an asset. We can’t, but there are caring people out there. It is just a matter of finding them. Have faith in that.
This is the new normal for us. For anyone suffering from chronic illness. There is no other real way for us to approach it. To get past it. Embrace your limitations and do the best you can around them. We have to focus on the day to day. The here and now.
There can be no plans, no tomorrow, without someone willing to pick up the slack because there is going to be slack. We can’t kid ourselves about that fact. If it isn’t a limitation, it wouldn’t be an illness. It wouldn’t be a disability.
Maybe it’s just me. I don’t know. I’ve fought against disability all my life pretty much without realizing it. There have always been various limitations that I’ve just worked around. Meniere’s is just one more constraint that I don’t want and didn’t ask for, but there is no disputing its presence so make the best of it.
We can’t wish it away, god knows I’ve tried enough times. The closest I ever come to prayer is in the depths of a vertigo spell. “Just make it stop.” After awhile it becomes “just make it through this minute.” Then it progresses to “five more minutes.” Then ten, then fifteen, then onwards. If you get to the end of the attack, you get to see another day. Every morning you get to see, like the pilot who says “any landing you can walk away from” is a good one.
Allergies have been kicking my ass for the last month. The Mother-in-Law has been declining in health for the last three months, requiring The Wife to be away for weeks at a time coordinating her care. This development has laid more burdens on my shoulders, more responsibility than I have had to maintain stress levels under than I have had to endure since going on disability.
The Son is a senior in high school, The Daughter has a job and neither of them drive yet. I have to train them to drive in one direction, getting them to their respective appointments on time in the process, and still be able to drive myself back home without triggering Meniere’s symptoms.
With all of this going on, health of relatives, my health, my children’s demands on my time, etc, I’ve still written more in the last few months than I have in years. You may well ask “why is that?” because I’m writing this article to tell you why that is, even though this is starting to feel like an infomercial from the inside, my writing of this piece. I’m three months into my CPAP experience and I credit my clearly improved outlook to my much improved sleep patterns.
To start from the beginning; I don’t think I’ve ever slept right at any point in my life. I have never gotten up in the morning on my own. It takes me hours to wake up (still does sometimes) to feel as if I am present in the world. Mornings have always been my enemy, and early arrivals have almost always been impossible to attain. The crime here is that I never thought to ask why this was. Not one time.
I accepted the blame for attendance problems, all my life. You are lazy. You need discipline. You need to do this or that fad thing. More light at different times of the day. Take these sleep aids, take this wake up pill, drink coffee in the morning, etc, etc, etc. The list is never ending and all of it has been wrong. All of it.
I used to get by on 4 hours of sleep a night, pretty routinely. Go to bed at 2am, wake up at 7am, go to work. Usually driving in the morning while not really feeling awake, having had to be shaken awake by The (ever faithful) Wife and pushed out the door with a cup of go juice after the mandatory wake up shower. I have always hated naps. I never feel like I wake up from a nap. The lethargy just continues until I succumb to sleep for several hours.
Weekends were sleep catch up times (something which has been demonstrated not to work) we would sleep well into the afternoon most Saturdays and Sundays, and still not feel well rested come Monday morning when the process started all over again.
Then the Meniere’s symptoms got worse, expanding from the Fall and Spring weeks of suffering to the months of suffering to almost every other day suffering. Rotational vertigo every week, sometimes more than once a week. I had to stop working. I had to figure out what went wrong. Why was this happening to me?
When I started paying attention to how I felt, when I started allowing myself to follow my own rhythms rather than the imposed rhythms of modern society; sleep when I was tired, eat when I was hungry, expend effort when I felt strong enough, I started noticing something about my sleep.
I slept way, way too long. I’m not talking about 9 or 10 hours. Sixteen hours was common, sometimes as long as a full 24 hours. At first we chalked this up to the side effects of the anti-nausea drugs for vertigo symptoms. I’ve always been easy to medicate. I’m a lightweight drinker, and generally another person’s half-dose of medication will have the desired effect on me. But the long sleep wasn’t limited to days when I had been taking medication. I also had very, very long periods of intense dreaming sleep. I’ve written about a few of these in the past. Most of them were unintelligible upon waking, but I really enjoyed them while in them.
Finally this year I decided to start looking into my sleep patterns to see if there was something that could actually be done to get me to sleep something like normal hours. Normal in a modern sense, not a historical sense, which is different.
I went to see a sleep specialist on the advice of one of my doctors. The sleep specialist said sleep apnea before I was even scheduled for a test. Well, that wouldn’t do. I’m not going to a doctor to be sold a treatment without a diagnosis. I was raised by a car salesman, I know when I’m being sold something, and this guy was a salesman and a half. Definitely not a doctor. So after getting another doctor, a real doctor (second opinion time) to understand that I actually wanted to be tested first, I did the sleep study. Eight hours of misery with hardly a wink of sleep from my perspective, trussed up like a turkey with wires and monitors the whole time. The technician swore to the fact that I actually did sleep, and that I stopped breathing just under 30 times an hour while I was asleep. Well within the range of needing a CPAP machine to help regulate breathing during sleep. So a second study wearing the CPAP mask was scheduled.
I was very anxious about sleeping with a CPAP mask. Sleeping with a mask on has always horrified me, in an Alien stuck to your face kind of way. Don’t believe me? This was the nightmare I had while waiting to be tested.
May 19, 2016 2:52 pm –Just woke up from another intense dream. Another architecture dream. But the dream wasn’t architecture, the dream was a video game. The particulars of the dream, the game, the architecture in the game, are not important.What is important is the meaning of the dream, the game, the architecture. I awoke with a profound sense of loss. A future fraught with anguish. Is this what my life is now? Am I defined by my abilities to play a game? It’s been 8 years or so since I picked up World of Warcraft. On the one hand it has kept me attached to people, given me a reason to get out of bed even if I didn’t feel like doing anything besides stare at a screen. On the other hand it consumes a lot of time that I increasingly feel should be devoted elsewhere, if only I felt well enough often enough to do something else.
If that is true, that I am defined by my abilities to play a game, then even by that limited measure I’m not doing too good. I cannot see the game well enough to follow the various bits on the screen and know where to move in time to keep myself alive. As a raid healer, that is a serious problem. I not only have to stay alive, I have to keep others alive. When they start telling you “your job is to stay alive” they are including you in their raid out of the kindness of their hearts and not much else.
My health is deteriorating further. The dreams are a signal. They have become more intense and lengthy as my health has worsened. I can fall asleep one day and wake up almost a full day later and not feel as if I have rested. How is this even possible? The notion that someone who used to brag about being able to get by on 4 (and one half. Most important bit that last half) hours of sleep a night could sleep 9, 10, 12, 16, 28 hours and not feel rested is baffling.
So I’m seeing sleep specialists now. Sleep specialists who are hinting that my sleep has probably never been normal. That I have a problem with sleeping that they can fix. Should I let them fix it? The dreams are all I have anymore. If they make the dreams go away, what will be left that is mine?
So the anguished dream I just woke up from?
I know I am real, but the characters in the dream, they are movie characters even though they stand in for caricatures of my bosses from the past. Frank Gaffney is in charge of the firm. Grace Ripley (blonde in a blue wig?) runs all the operations. The game is part of the business, the architecture of the story. The game mirrors the events that occur in the ‘reality’ of the job, serving as an oracle for what happens next. Except that the dream, the reality, is coming to an end. The game is bugged and can’t be completed. It has to be reset. It resets reality. The characters reform in different roles and the game/reality starts over.
Without my dreams, what am I? If my dreams directed me to take up architecture, informed my designs and my goals, will fixing the sleep problem I’ve apparently had all my life destroy the creative side of my life? Will I finally fully wake up and discover all of it was a dream? The certificates and licenses? The rolls of drawings? The wife and children? What is real? What is the dream? I don’t think I can tell anymore.
I am stuck. Stuck in a cycle that has to be ended. I have to figure out what is ailing me so that I can get back to some sense of normality. I cannot continue to sleep for extended periods and marvel at the texture of the dreams. I guess it is time to really wake up. Hope I see everyone on the other side of treatment. Would hate to lose anyone to a reset.
These were my thoughts about the dream, and the dream itself, before going in for the CPAP test. You are being over dramatic, The Wife objected. Don’t publish that right now. Do the test first. See what happens. So I decided to quash my fears until after the test was completed. Let them remain unvoiced for the time being. But I did vow to start this article at the time. I would record my thoughts about my CPAP experience during and after the diagnosis and treatment. I wanted to at least do that much. Record my fears. The facehugger nightmares. The vague fears that life is passing me by and I can’t do a thing about it. But also to record my experiences with the treatment just as they occurred.
The weird part is, once I tried sleeping with the mask on, I knew I was hooked. Right away. The first test was torture. The wires woke me up. The sensors woke me up. I tossed and turned all night. The second test, the test with the mask on, was the best sleep I had had in years. Years. Longer than I could even remember. Never even noticed the wires and sensors until the next morning. Breakfast was ecstasy. My mind bounced everywhere.
I quite literally could not wait to get a machine for the house so that I could try it out regularly in an environment that I felt was comfortable. That process took a few weeks. Medicare pays, but it isn’t fast about doing it. Eventually I did get a machine for the house and that is when the actual work with the machine, the company that supplied the machine, started.
From the first night I realized that I needed to get something to hold my mouth closed at night. I would wake up with my mouth dry as a bone. The chin strap they sent me was of cheap manufacture, but The Wife is the granddaughter of a seamstress, so there was a remedy for that cheap chinstrap that fell apart problem.
Getting the supplies from the machine supplier is probably the most worrisome part of this process. They are completely unwilling to give you extra parts just in case you might need to swap out straps or masks or filters or anything.
Other than that process, dealing with insurers and medical aid suppliers, the experience with the machine has been pretty smooth sailing so far. I put on my flight mask at night and “ascend to 15,000 feet.” I am in my third month with the machine and although I still sleep as much as twelve or 13 hours on occasion (especially when the allergies trigger Meniere’s. Like today) I can get up in the morning when I need to, for the first time since early in my career as a draftsman. Get The Son to school on time with more regularity than we’ve probably done in his entire life.
I haven’t had time to play many games, what with all the other problems that have had to be dealt with this summer. I think I only managed to go swimming one time, which is a record for me. I generally spend days at a time in the pool. Not this summer. There was definitely no time to start the new version of World of Warcraft, even if I had wanted to (luckily I didn’t) and I still haven’t finished the one game I wanted to play, Skyrim.
I have done some writing though, a lot more writing than I really felt I could pull off. I’m still working on some other articles that I have to publish before the election ends, but I have little fear I’ll get to those too, as well as pick up some articles I’ve left laying around for far too long.
Best of all, the dreams continue. I don’t know why I have these extended dream periods, but I am thankful for them. They are more hopeful these days, at least. Not fraught with horrors and endings like they had been for the last decade or so. Still pretty grim, but a better shade of grim. I’ll take that.
I’ve had several interesting conversations since writing that piece. I’ve had two or three good ideas (one of which will be applied to the next chapter of EPHN if I ever get around to completing the one I’m working on) None of the stuff I come up with gets beyond notes phase. None of it gets beyond notes phase because essentially, I have no brain. The problem I’m having is one of the symptoms of Meniere’s, one that half the medical community says isn’t real. Those of us who have Meniere’s know differently. We call it brain fog. I’m struggling with it right now, so please bear with me.
I’m trying to write today even though I have trouble forming basic thoughts because this is yet another part of the disease that plagues my every moment, and I don’t really bother to talk about it to anyone outside the wife, the daughter and the son.
Brain fog. It’s like the insides of my head are full of cotton wool. Like the frontal lobes of my brain (had to look that up, sadly) have electrical current running through them, and conscious thought is elusive. Just beyond reach. Most frequently brought on by vertigo attacks, it can show up without notice any time the pressure in the ears change, the tinnitus changes, the headaches start or stop. You name it. I think I had a vertigo attack while sleeping last night because I went to bed early and dizzy. I woke up the drooling genius searching for keys on his keyboard that I am now.
When I woke up seven hours ago I thought about writing this piece. Clever ideas about what to say, ideas about how to express myself floated in one side of my head and out the other. They are lost to me now. I keep hearing the voice of the antagonist from Spock’s Brain “I put the teacher on my head” a frequent joke around the house when one of us is forgetful.
But it really isn’t a joke when I feel this way. Ah, to have access to a device that would put the knowledge back in my head. To restore the mental acuity that I usually take for granted but is so lacking now (took a full 30 seconds to come up with the word acuity) I’m torn between stomping my feet in mock anger “brain, brain what is brain?” or just going with the flow and embracing the silence.
The above is another inside joke around this house, as frequently referenced as Spock’s Brain. At least Earth Girls are Easy was meant to be funny. If only I was blond and female I could make vapid work for me. Guys without brains or muscle aren’t of much use. The Wife is blond and generally smarter than me when I’m like this. Some would tell you she is always smarter. Can’t argue with that right now.
So I’m going back to my marathon of Better Call Saul. Been meaning to watch that anyway and it is complex enough that I actually have to watch it or I’ll miss something, unlike most television. Finished the Expanse yesterday and there won’t be new Walking Dead till Sunday. I’ll find something else to watch when I finish that. Hopefully this fog will pass soon and I’ll have something more substantive to say.
(This post subject to edit or deletion when the brain returns. Come back soon, brain)
I’ve had several requests to describe what Rotational Vertigo feels like to me. It is actually quite hard to describe in a way that the average person might be able to visualize. When I’m pressed for time I frequently say something like imagine the worst drunken binge you’ve ever been on. For most people (a majority, sadly) that gets an enlightened response.
But that really doesn’t do the symptom justice. For me, being drunk (even mildly intoxicated) can be vertigo inducing, has always been vertigo inducing. I don’t drink and go to sleep anymore. That almost never happens. If I feel like having a glass or two of brandy or cognac, I’m generally up for the duration of the effect (8 hours or so) because lying down makes the vertigo worse.
So what is rotational vertigo really like?
First, imagine you are at the center of a merry-go-round. The merry-go-round is spinning. It doesn’t even have to spin fast, it can spin quite slowly, just enough that you can’t fixate on a single point in the background.
This is the key problem with the spinning. It isn’t real, but your body doesn’t know this. Your body doesn’t know that the balance mechanism in the ears is broken. So your eyes try to track the spin that isn’t there, causing your vision to dance back and forth (this is why reading can be a chore when you have a problem with vertigo) mimicking the spin the balance mechanism says is occurring.
So you are on a spinning merry-go-round. Now imagine that every stationary object you want to interact with is spinning at the same rate. There is no fixed point to anchor to (if you concentrate really hard you might just be able to override this. Maybe) so the handrails on the stairway, the walls of the shower, the glass of water to wash your pills down with dance madly around you while you try vainly to grab them from thin air.
Now imagine that this dance continues for the rest of your life; figuratively, if not in reality. Because it feels like forever. I’ve fought this thing for days at a time in the past, just because I’d already slept for what felt like days and I just couldn’t sleep anymore no matter how many pills I took.
I can’t describe it better than that. I don’t dare go looking for video to describe it. Just seeing video that includes rotation in the theater can bring on sympathetic feelings of spinning. I frequently must look away from films with rapid rotation (Gravity was torturous. Loved that film, couldn’t watch half of it. Go see Gravity in the IMax and sit real close with your hands trapped at your sides) or I have to hold my hands up in front of my face so that I can see that there is a stationary object in view while the rotation on screen persists.
So how should I treat it? is the question you are probably left with if you have this symptom. My article Treating Meniere’s & Its Symptoms covers general treatment suggestions for Meniere’s. However, dizziness and vertigo are so common that they rate a separate discussion from the general Meniere’s discussion.
There are various treatments for re-aligning the otoconia in the inner ear, which is frequently the culprit causing dizziness and some forms of vertigo. I’ve tried a few of these treatments for persistent dizziness (dizziness that lasts several days) with limited success. The half-somersault maneuver looks like one of those kinds of treatments.
If the problem is the otoconia then this kind of treatment should alleviate the problem. If it isn’t then it won’t. It is pretty straight-forward to just try these procedures if the vertigo doesn’t let up after a few hours. You are liable to find that it won’t help for meniere’s vertigo and dizziness. If you still feel dizzy it is probably a good idea to see a specialist before ruling this kind of treatment out entirely. I have given up on them unless it is a specific kind of dizziness that I recognize as being different from the Meniere’s.
The one thing I have found that helps for vertigo and dizziness aside from drugs is finding a head position and/or a focus point to stare at. I personally find that turning the head slightly to my right (I am afflicted in the left ear) and looking slightly downward is the best position for me. I have a catbus that sits near the correct position next to the bed. A friendly catbus that smiles its cheshire grin at me while I try desperately not to spin.
Staring at a fixed point in space, preferably staring at an object that is crafted to inspire trust and happiness, helps quell the spinning long enough for the drugs to kick in, or until the spell passes. One or the other of these two things will occur eventually.
Sports metaphor. That should be the first sign I’m not myself. I have no use for sports, but an upbringing at the foot of a man who never missed a game (Baseball, Football, you name it) has layered my subconscious with a multiplicity of sports metaphors that lend themselves to almost any situation. Sadly.
Was working on a piece for the blog a week ago when this latest round of Meniere’s fun started. Haven’t had a spell like this in living memory. I’ve had short-term worse recently (a drop attack about a month ago lasted less than 10 hours) but I haven’t felt this ill for this long since I gave up work in 2005.
I have been on the Meclizine for the last few days. The affected ear has been hypertussive (all sound hurts) for over a week now. The tinnitus has been off the charts loud, and I’ve been off and on vertiginous for the whole time. Every thought feels like it has to be forced through jelly to get out of my head and onto the page. More than a week avoiding sound, bright lights, etc. Going a bit stir crazy, I think.
I’m pretty sure this is my allergies acting up. I haven’t been eating or doing anything out of the ordinary that could have caused it. Unless the excavation going on in the neighbor’s back yard is releasing something into the air (mostly joking) I can’t think of anything else that could be the cause.
Which is the big problem with this disease. It just hits you. You’re down, can’t think of anything you might have done wrong, so you play association games trying to figure out what triggered this attack that you’d rather die from than suffer through. That’s how you get to conclusions like low-salt diets and alcohol and caffeine causing the symptoms. The truth is that there doesn’t need to be a cause, and nothing you remember doing actually is as fault. It is a disease, and the symptoms occur because you have it.
Allergies are a known trigger with me, though. Pollen levels for various plants are generally elevated when my symptoms are bad. It was spring and fall pollen season that first triggered symptoms for me way back in the 1980’s and 90’s. To top it off I quit getting my allergy shots a few years back because I had concluded that I wasn’t getting any additional benefit from continuing them. I had been getting shots for over a decade, I really didn’t see the point in continuing.
Given what I’m suffering through now, perhaps stopping treatment was a mistake. Time to head back to the allergist and see if the shots can’t get me back to something resembling normalcy. Shots twice a week again, really looking forward to that. Beats the alternative, as the saying goes.
Woke up to a Huffpost story on chronic pain in my Twitter feed. 15 things no one tells you about chronic pain as a 20-something. I identified with number 4 on the list almost immediately, since the first order of business today was to take my first shower since Friday or Sunday. Given that I can’t remember when it was, combined with my inability to stand my own smell, today is shower day one way or the other.
It was glorious and at the same time frightening, since balance in the shower is of paramount importance. I try not to think about how clean the shower walls are when leaning on them. Cleaner than I am after 5 days, in any case. Now back to vegitating and re-watching last season of The Walking Dead. Prepping for next season early, since in my currently hazy state I barely remember watching the episodes before anyway.
I posted this on the 13th of July. It was July 8th when I started the piece I wanted to write next. Today (July 21st) I finally got out of the house and went for a three mile walk. First time I’ve gone on a decent walk since (checking Endomondo) the 10th. My how time crawls when stuck in a rut. Felt like it had been a month or more. Got dizzy while walking but I’ll take it. Best day in over a week so far.
I gave up updating this every day that I felt moderately well enough to write. On my birthday it was a month since I wrote this piece and today (August 22nd) I felt like writing; felt like writing if only my ears would stop trying to pop out of the side of my head.
I received a brand new Nexus 5 for my birthday, and that has kept me beautifully distracted since I got it. I can finally play some of the games I’ve been wanting to play and install several apps that just were too big for the HTC Evo Shift that I’ve been using for the last two years. My heartfelt thanks to the friends and family who made the gift possible. It really was the only thing I wanted, one of the few things I can use while essentially bedridden for days at a time.
But I don’t write on a phone, I write on a keyboard. I have to feel well enough to get out of bed, not collapse in the easy chair with Netflix to comfort me, sit down in front of a computer or with a laptop and write. Then I have to have something in mind to write about.
Back to the ears again. Pressure and sensitivity to sound again today. The tinnitus drowns out thought and makes long chains of reasoning virtually impossible. Next week I will go to the allergist and probably get myself tested again, start shots again. I don’t know what else to do, so I’ll return to allergy treatments and see if that helps.
Just felt like letting everyone know I was still alive. Here’s a picture of my dog wearing my walking hat to cheer everyone up;