TOUCHED BY LYME: (guest blog) Sleepless in Berkeley: how Lyme messes with your head and your heart
Guest blogger Bob Cowart, who has been diagnosed with both neurological Lyme disease and Parkinson's, articulates some everyday realities of dealing with those conditions. He dictated this article into his computer.
Reprinted by permission from Bob Cowart’s Blog:
There is something about Lyme that is particularly infuriating: It messes with your head and your heart. Just like Love. After 2 hours of sleep, I just woke up with not only trembling in my chest that is running at about 8 Hz (the same as my tremors elsewhere, such as feet and right arm), but with a high pulse (83). Well, high for me. At first I thought vaguely, “Oh, you’re ok. This is normal. True, you could barely eat dinner tonight, trying to coordinate your arms, and you had trouble standing upright in the shower at the gym without falling over, almost froze like a block of concrete staring at the bed tonight trying to remember how to get in it, or remember how to brush your teeth, but it’s nothing. Roll over and go back to sleep. Ok. Now, how do I roll over, again?” For anyone with neuro Lyme or with Parkinson’s, these experiences are common. This is everyday reality. The part that makes you feel insane is wondering a) whether it’s normal, and b) if it will ever be different, will I ever feel ‘right’ again?
You have to remember, ‘sleep’ for me already means something different than it does for the average Joe. First, I put in a sleep-apnea oral appliance that looks like a double retainer, sort of like what you get after the orthodontist takes off your braces, only one for the top teeth and one for the bottom, tied together with a steel pin. The object of this device is to push the jaw (technically called the ‘mandible’) out, in order to prevent the tongue from falling back into the air passage and stopping me from breathing. Then, to prevent me from breathing through my mouth (I’m what they call a ‘mouth breather’), I have to tape my lips together with something. I use 3M Micropore tape because it’s for medical purposes and hurts only a little to remove in the morning. Then I put in foam earplugs, because I sleep so lightly that even raindrops on the window will awaken me (as they just did). Then an eye shade because ditto, for light. After all that and 6mg of Melatonin, I hit the hay. And then I pray I’ll be able to sleep.
An important factor of successful or even semi-successful sleep is that I start in a good position. You’re probably thinking “Oh, come on Bob, this is true for everybody, including me.” But what you don’t know is, I have to pick a perfect position because I’m not going to move during the night. Not because I don’t want to, but just because I don’t. I don’t know why, but this is true for people with Parkinson’s disease, too. They just don’t know how to move while sleeping, apparently. So I will wake up in the same position I went to sleep in. If I’m a little bit off, such as my back is out of alignment, I will have a sore back the next day. Or if the pillow is under my head in the wrong way, it’s going to be that way the whole night. I might have a sore neck the next day.
It’s also true that for me, and for a typical Parkinson’s patients, we don’t know how to turn over even when we are awake. Or semi awake. It’s almost impossible for me to turn over in bed or to change my position. It’s a combination of lack of strength and lack of coordination. It’s a little bit like trying to find a word that you can’t quite remember. I used to know how to turn over in bed. I used to know how to hold my fork and eat a piece of steak, and how to cut it. But now I can’t seem to remember how to do either.
And no, according to brain scans (I’ve had four), I have not had a stroke. I do have a half dozen small holes in my brain but they are no bigger than the average holes in anyone’s brain. So what used to be simple pleasures like this become sort of brainteasers like playing sudoku or doing a crossword puzzle, only infuriating, non-optional, and low on my entertainment scale. I have to remember mechanically, or I have to figure it out on the fly: “Now let’s see, how would I get that steak into my mouth if I were human being who had to pick up this fork and hold it and stab the steak and then aim it towards my mouth?” It ends up looking a little awkward, at best. And, it feels very weird, indeed.
This is what Lyme patients have to go through with almost everything they do, and it’s called having “brain fog”. On a good day, you sense it as just being sort of weird. You feel like molasses in January. You’re stuck, you freeze, you forget what you are doing, you even can’t remember how to move to pick up your pen. You can’t tie your shoe. On a bad day, it’s infuriating and you feel rage. “Why me?”, one asks. How long will it be this way? Or you just feel rage, with no question at all. It’s just anger. It’s called “Lyme rage.” There is speculation in the medical community that Lyme rage is caused by certain co-infections of Lyme disease such as Babesia or Bartonella. It’s probably true. When I was sickest, about nine years ago, I had so much Lyme rage , It was unbelievable. I had no idea about Lyme rage or what it was. All I knew was that I went from being a normal person to wanting to strangle even my best friends. But it’s not as bad now as it was then.
But I’m straying from my point. My point was about the ritual I have to go through to go to sleep at night. So you can imagine what it looks like, my head has earplugs, taped lips, eye mask and I get into bed, lie flat on my back and straighten myself out totally so that I’m as ergonomically correct as possible. Then I turn off the lights — if I can reach the lamp, which often I cannot.
You’re probably wondering or asking yourself “Well, you can type this in the middle of the night, can’t you?” Actually, I’m sitting here like a shaking rock, talking into my iPad. The iPad is typing what I say through the magic of the Dragon Dictation application that is running on it. All I can do is tap the screen and talk. I often tap two or three times when I mean to tap once. My right arm is banging against my body at that telltale 8 cps speed and is rigid. I’m sitting crosslegged on my bed at 4:14 in the morning, talking into a computer, trying to let the world know that other people are not alone if they’re having in an experience like this. This is the best thing I can think of to do right now. Other people in the neighborhood are blissfully asleep in their houses, I presume. Maybe they are dreaming. Maybe they are dreaming happy dreams. Personally, I can’t remember the last time I had a happy dream. A couple of nights ago I had a dream where, like Persephone, I was trapped underground under the crusty surface shell of the earth, agitatedly wandering about, not being able to find a way out. Mostly though, I don’t remember my dreams. Maybe that’s a good thing.
Getting back to the fact that I woke up at an expected time, I was aware that I was in a vague state of confusion about what I should do. After a minute or so, I realized I should take my pulse because I was feeling a very intense feeling in my heart. Trembling. Sure enough, even though what I was feeling in my chest was the telltale 8 cps shaking, my pulse was actually high. You see, except for one nurse who heard the trembling in my heart once in her stethoscope, no EKG tests have been able to detect it. It’s just something that I feel. People can see the tremor in my hand or in my feet, but they cannot seem to detect it in my heart. I was surprised when the nurse heard something and said “Hey, what’s this trembling sound I hear in my stethoscope?” I said “Denise, even the EKG could not detect that. They did not believe me when I told them that I feel it all the time.”
In any case, I decided I should turn on the light, get up, go upstairs, get my blood pressure meter, and my thermometer and take my vitals.
What did I find? The usual. Another reason to wonder if I’m crazy or not. Blood pressure: 103/72. Pulse: 83. Pretty normal. Well, 83 is fast for sleeping. It’s not out of line if you’re having a dream. But, when lying quietly, it should not be 83. My resting pulse used to be 65 or so. Sometimes even slower. But now it is quite quick, almost all of the time. Between 72 and 90. And I can’t do something that most people can do which is called “make yourself comfortable.” I used to be very comfortable almost all of the time. And why not? After 35 years of practicing meditation and other relaxation techniques, I certainly knew how to “make myself comfortable.” But now, no position is comfortable. How can you be comfortable when your muscles jam up like a rock and your toes are shaking and cramping and your stomach is tight and your heart is pounding? And your hand turns into a claw when you’re trying to eat an enchilada? Or just hold a regular expression on your face while talking to someone who doesn’t know that internally you’re shaking like you’re afraid you’re about to die or that you might actually die any minute, or that you might fall apart right there in the Nation’s hamburger store on Main Street in Alameda, while you’re eating a piece of Apple pie and talking about religion with a friend? And that’s the same feeling I had when I woke up an hour and a half ago, before I started writing this. Am I going to die now?
They say that the cause of post-traumatic stress disorder (PTSD) is going through a traumatic experience like an explosion in a war zone. Something dramatic. But another causative factor of PTSD is low-grade, continual, repeated stress. Like being an incest survivor, or a Holocaust survivor or even surviving the oppression of a stressful workplace. I had a client when I was a psychotherapist who had a job as a TSA operator employee whom I believe is suffering from post-traumatic stress disorder as a result of job pressures. She suffered on the job, constantly worrying whether someone who just walked by her was carrying a bomb. Or might be. She wasn’t allowed to go to the bathroom for fear that someone might walk by who was the next terrorist and blow up a plane, and she’d be responsible. Well, it’s about like that. Waking up every morning wondering if I am going to be much worse today, how the disease is progressing, how much brain damage is permanent, how much is temporary? Questions like that are everyday realities for anyone with a chronic disease. I’m not claiming to be unique. But having two diseases with unknown causes and unknown cures, and especially having one that the medical system claims almost doesn’t even exist, and that the insurance system won’t pay for is pretty crazy making.
And then there are the financial worries. I have already spent the better part of my retirement savings trying to figure out a cure for this disease that continues to worsen and erode my sense of self confidence. (I was very diligent about contributions to my SEP-IRA while I was gainfully employed, often making the maximum annual contributions.) I have spent nine years being out of work, seeing doctors, making the best out of life while being sick, trying to reinvent myself, going back to school and getting a masters degree in psychology, thinking it’s all psychological (which it is not – I underwent years of psychotherapy and even earned a masters degree in the field, just to be sure), and trying to be a trooper. I have pretty much given up being in a relationship because that is just about impossible with a disease like this. Well, at least for a single person diving into the dating scene. It’s kind of like trying to buy health insurance with a preexisting condition. It’s a tough sell. I envy the people with Lyme disease who have a mate to help them through this. Ditto that for Parkinson’s. There’s nothing like going on a first date for “dinner and a movie” where you can can’t eat, and you can barely sit still in the movie theater.
Unless you’re going shopping for an partner in a chronic disease support group, it’s kind of awkward starting your first date saying, “Oh, me? Well I have this weird disease called Lyme disease that can look like between 200 and 300 different kinds of diseases”, or “I have Parkinson’s disease which is a degenerative neurological disorder that is sometimes fatal but always degenerative and there is no known cure. Oh, and if it is Lyme disease, there is speculation that it is sexually transmissible, kind of like Syphilis.” It’s not exactly a conversation starter. But if you have a party with too many people in your house and you’d like to empty the room, it’s a pretty good tactic.
Well, sorry, I didn’t mean to make this entry sound like a pity party. But I guess I am feeling pretty miserable tonight. I just took a Valium, so I might get some sleep after all. In the meantime, I promise to make the tone of the next entry more upbeat. There have been some bright spots in all this, and I have been thinking about those more lately. I’ll try to elaborate when I’m feeling a little bit more positive.
Your Lyme disease correspondent from the field,
Robert (Bob) Cowart has written over 45 books about computing, with over a million copies sold worldwide in over 15 languages. He is also a psychotherapist intern graduate of the California Institute of Integral Studies (CIIS) in San Francisco. Robert has had Lyme disease for an estimated 40 years, and was diagnosed in 2006. He was diagnosed with Parkinson’s disease in 2009. He is (was) also a pianist, bassist, and concert promoter and impresario. He founded and hosted Hillside Concerts, a classical, jazz, and world music concert series in Berkeley running for the last 19 years. All of these activities had to be suspended due to symptoms of neurological Lyme Disease.