Parsing Chronic Fatigue: Am I tired or just tired?

Well, I’ve been on the new meds for a little less than a week and so far, so good. My energy levels and clarity are slowly improving. It’s funny, though; I now find myself parsing tired.

Here’s what I mean, and it will likely seem as familiar to those with chronic illness as it will opaque to those without it. (If you find yourself in the “opaquey” category, count your blessings.) Now that I’m coming to experience some real relief from the symptoms of the infection, I’m starting to experience something I haven’t known in years: what the human body is actually supposed to feel like. That takes some getting used to! Learning that it’s okay to be tired is part of that.

I have spent the better part of a decade now fighting deep, chronic fatigue. Most every day could be described by some use of the word “exhausted”. Some days were less bad than others. In fact, a number were even quite decent, though few, if any, were what most people would call “normal”. At their worst, I sometimes wondered if I might actually be dying. Recently, Kami and I shared a story with Inklings III and the description of the main character’s parents, initially written several years ago, was based on my own “worst-of-times” experience:

I do not remember my parents ever talking much, but I do remember the weariness. The absolute, marrow-sucking weariness that I saw in their eyes from the moment I was first old enough to recognize it. They dragged themselves to bed each night with it consuming them, and they awoke the next morning no better rested than before. I have always wondered who they really were, if you could strip away all of the pain and exhaustion that had accumulated behind their eyes. I think they would have been kind if life had given them the chance to be, but I will never truly know. When I spoke to them, even on the day they sent my sister Meejin away, I never saw beneath that dull glint to a real person below.

Compared to some illnesses (like, say, cancer) it doesn’t seem to be that dramatic. I wasn’t debilitated with excruciating pain or given three months to live. That is what is uniquely evil about chronic fatigue, I think. The burden may be comparatively “light” but it is still very heavy. It never goes away. You lay down with it to sleep in desperation, and you wake up to the same burden, day after day.

If you’re lucky. Because many of the same conditions that cause chronic fatigue also disrupt sleep. For me it was back and joint pain. I would lay there and toss and turn. About the time I would begin to seriously doze, the pain would wake me and I would shift positions, only to be reawakened an hour or so later. I’ve been entire months without a really good night’s sleep. When that happens, sleep, the one thing you need most desperately to help you, only piles the weight higher and deeper.

Worse, unlike a major disease like cancer, the world around you doesn’t acknowledge or understand this kind of fatigue. The demands to perform don’t decrease. Even at my worst, I still had to deliver–care for my family (including a chronically ill wife) and somehow succeed at work. In all of those places, I’m expected to be normal and happy. After all, my toddler needs me as much as my boss. Neither can understand what’s happening. (Nor should they! It is my role to bear their burdens, not to be one myself.) There were days when sheer dedication to duty and the Grace of God were all that kept me going.

Frankly, I’m lucky I still have friends. When you’re that tired for that long and the exhaustion is so deep it’s painful, it’s hard to be winsome. It’s difficult to even think clearly or to grant anyone any slack, least of all yourself. My own particular version of this psychosis told me that “speaking the truth” in “tough love” was how I could show loyalty to others. You can imagine how that might go over and the martyrs complex I could self-generate when I discovered it wasn’t appreciated! Hmph. I didn’t even like myself–it’s easy to understand how others might not like me too.

Of course, most days were somewhere in the middle, but all-in-all, it was very easy to forget what “healthy tired” means, the kind of natural tired you feel at the end of a long, productive day or a hard workout.

That leaves me to wonder, even now, what I’m actually feeling here. It’s now 9:30 pm. Today, I’ve made breakfast, corresponded with students, written a bit, run to a friend’s apartment to help clean up for a move (it fell to me to vacuum), come back for more writing/work, dinner, and put the baby to bed. Is that a “full” day? Should I feel justified in the vague weariness clinging to my eyelids? After all, I didn’t workout today or do much physical labor. Could it be I’m lazy? Could it be the infection coming back?

It boggles the mind how so much uncertainty could be bred of something so simple as being a little tired. I do know I’m blessed in this, however: I’m starting to feel good enough again to worry about the difference. And that is an encouraging thought. ūüėä

Advertisements

Getting Moving Again…and new meds!

Well, it’s been some time since I was able to even think about sitting down and blogging. ¬†I just completed a long trudge through creating a US I course that required hours of written scripts that I then had to record. ¬†Every spare minute not taking care of work or family was sunk into that project. (And now I have US II to go by November! ¬†Acketh!)

But we’ve been back to the doctor, and we’re opening a new phase in our battle. ¬†As I believe I mentioned, it’s been confirmed that I’m facing a chronic¬†bartonella infection that seems to have taken up residence in my innards.¬†The first round of anti-biotics helped notably for the first two-weeks, but then I seemed to relapse into more distinct pain and exhaustion. So, she’s shifted me off Minocycline (the least expensive one, of course) and added RifAMPin.

RifAMPin is used for tough, chronic bacterial infections, according to the net. While the usual “this will make you turn your skin inside out” reviews were to be found on places like WebMD, I was encouraged by what I saw on the various Lyme sites. ¬†Quite a few people there spoke about it like it was a wonder drug. The big concerns for side effects in this case is liver damage, so I’ll be getting labs done after two weeks.

At the suggestion of a internet post (approved as a good idea by my doctor) I’ll be pairing this med with Milk Thistle to try to help my liver metabolize and cleanse it.

Two interesting points, perhaps. ¬†First, I noticed that when I started the anti-biotics in the first place, within 24 hours my innards started working properly again. I remember thinking that is odd–isn’t it supposed to be the opposite with anti-biotics? ¬†According to our doctor, apparently, people with bartonella are the exception. When it invades the intestines, it shuts things down, so when you start killing it off, it opens the door for things to work right again. (I’m also taking 200 billion pro-biotics a day to head off problems on the other extreme…)

The second point, if you happen to ever need to take RifAMPin, is that it colors your…liquids…red-orange. And by that I mean everything, apparently–including sweat and tears! ¬†I’m not sure if this means a hard workout will stain my clothes or not. ¬†Fall needs to get here quick!

Kami is also beginning a round of anti-biotics. ¬†The doctor things that she is facing systemic infection that is causing overall inflammation. This is encouraging because she is the first doctor to have a clear indication of what might be going on with tests to back it up. ¬†She says that if she’s reading the numbers right, Kami should experience some quick relief.

Here’s hoping and praying! There’s a good chance we both have some herxing in our future….

Jus’ Sayin’: I’d like to have an argument, please. In front of the kids.

Well, if this blog is going to be anything other than a list of treatments, I’m going to have to talk about other things. It is about¬†life with Lyme, after all. ¬†Hence, I’d like to offer thoughts every now and again on various topics (not politics) that I hope you might enjoy.

And remember, I’m “jus’ sayin’.” ūüėČ


sad-man-in-bedI’ve heard it said–very truly–that you should “never let your kids see you fight with your spouse.” Taken literally, that is very good advice. Unfortunately, many people I know don’t take it literally and what results does far more harm than good. ¬†Let me explain…

You shouldn’t “fight” with your spouse in front of your kids. But “in front of your kids” really has nothing to do with it. Of course, doing it in front of kids makes it a worse sin, but that isn’t the fundamental issue. ¬†You shouldn’t¬†fight with your spouse at all, anywhere, any time! ¬†“Fighting” implies a level of not just anger, but unthinking, unloving hatred that has no place in our lives or in our marriages.

(As fallible, fallen human beings, most of us will cross this line in our marriages at some point or other. When we do, it obliges us to practice another set of virtues: forgiveness and repentance. But that is really another post.)

Note that I did¬†not use the word “disagree.” Disagreements are natural for human beings, even (especially) human beings who love each other deeply. Disagreements will inevitably lead to “arguments”–by which I mean each side holds his/her ground at least long enough to find out which one is right. But, it is very, very important to note that while fights can start from arguments, no argument ever has to become a fight.

All too often, in our oversensitive world, we conflate “argument” with “fight”. My father was that way. No one could disagree with a word anyone else said in his presence without it being a “fight”. I loved my dad, but this is unrealistic nonsense. Disagreements are inevitable in life, and when they happen, working through them (arguing–or discussing, or whatever euphemism you prefer) is the only way to move forward. ¬†After all, if you pretend that there’s no disagreement, you help no one. The disagreement is still there–niggling away at your heart and mind, building itself up for a real explosion that will result in a real fight. Worse, sometimes disagreements really matter, meaning the person who is wrong may actually be heading for real danger. Working through the issue and seeing all the evidence may be the only way to save themselves.

And this is why I say, “Yes! You should argue in front of your kids.” Where else are they going to learn¬†how to do it in a loving, truthful way? From the internet and social media? ¬†I’m sure we all want our kids dealing with disagreement like the average internet troll. School? Being told to sit down and be quiet isn’t at all helpful. The movies and TV? (Sounds of machine guns firing and bones breaking.) Not really. Apparently, we think so, since our mantra as parents is to avoid any and all conflict in front of our kids at all costs.

Is it therefore that surprising that we have skyrocketing divorce rates for several generations?

No, home¬†the best place for them to learn how to deal with conflict, especially conflict in marriage. ¬†Our kids¬†should¬†see us working through our problems and differences–especially the tough ones. They should see my wife and I butting heads. Through it all, they should see the deeper love and respect we have for each other that allows us to go through it and come out on the other end together. They will (hopefully) know what healthy disagreement looks like, how to disagree healthily, and (perhaps most importantly) how to identify and avoid people incapable of it. That’s part (but by no means not all) of what will set them up for a successful marriage when the time comes.

Note that I don’t think we should drag our kids through our darkest places. There are things that are, frankly, none of their business and others that they may not be ready for. Further, this places another burden on our generation–many of whom have never known what healthy disagreement looks like either. We have to become something worthy of respect in order to model it for our kids. And that ain’t easy!

In a very real way, the principle here is the same as the logic behind this blog: When people watch us suffering through a hard thing, be it disagreement or Lyme, has the potential to build others up or to tear them down. I’m hopeful for the former.

So, don’t fight in front of your kids. Disagree in front of them and work it out–if you love them.

 

 

2013: “These things just sometimes happen, you see?”

Sign for the Augusta National Golf Club
Does anything say “Augusta” more clearly than the Masters?

If you recall, oh intrepid reader, when we last left off, it was  mid-March of 2013.  After nearly passing out at work, I was in an ambulance, heading to University Medical Center in downtown Augusta, my heart apparently going wild. And not in a good way.

While I was in the ambulance, I felt a little odd, but fine overall. ¬†Apparently my level of calm was somewhat unnerving to the EMTs. ¬†They weren’t used to my level of not-freaking-out. ¬†I talked with them quietly and told a few jokes (dumb ones, like as not). It helped that I still had experienced no pain, just fatigue and that weird fluttering sensation in my chest, and so it was hard to “envision” a medical crisis.

I also felt very confident that, whatever happened, even if I died, it would not be outside God’s control or His plan. I knew this was a fact and that I would either conform my opinions to it or I would not. Just like 2+2 would always equal 4, God’s sovereignty would be true, whether I wanted to admit it or not. Don’t think this reflected some kind of credit to me; for some reason it thankfully came easily at that moment. I would have to wrestle with really understanding it for months afterward, with varying degrees of success. ¬†As most people, I really still am.

My wife, Kami, and our daughter met me coming off the ambulance. It was good to see them, though I hoped they weren’t too worried. ¬†Soon, my daughter was bundled off to her cousins’ house and Kami and I were ensconced in the emergency room.

It appeared that I was suffering from something called “atrial fibrillation” (afib), an electrical disorder of the heart where the top chambers get confused signals and start to quiver. The larger, lower chambers race to try to keep up. ¬†At points, I saw my heart rate shooting over 180 beats per minute! ¬†That isn’t sustainable, and, if allowed to continue, can eventually lead to heart failure.

Well, as stereotypical as it sounds, they said that an electric shock could knock me out of it and they could send me home that night. ¬†We tried it. Twice. ¬†They knocked me out, brought in the paddles, and…nothing. (I later learned that this particular operation could have killed me. In afib, clots can form in the heart and a shock like the one they gave me can dislodge them, causing, in effect, a do-it-yourself stroke. Thankfully, I hadn’t been in afib long enough to form any clots.)

I was given a chest x-ray and a doctor came in to tell me that my heart was swollen for reasons unknown.  He was admitting me to the cardiac intensive care unit to try to bring things under control. They put me on medication to bring my heart rate down, and waited for me to come out of afib while performing various tests.

It may well be a testimony to the amount of stress I had been under that these few days in the hospital were really more like a vacation. With the exception of waking me up at midnight and 4 am each night to take my vitals and “make sure you’re sleeping well” (!?!?) I was actually able to relax and rest. I still felt exhausted, but under the circumstances I can’t say that was surprising. ¬†The food was decent, and the most annoying thing about it was that no one would let me get up and walk around on my own.

And here’s where it started getting really strange.

Usually, when things like this happen, there is a reason for it, and that reason is often quite plain. The doctors who examined me would cluck their tongues as they asked questions and you could see the conclusions forming in their minds.  And then the test results began to come rolling in.

The first was an echo cardiogram, which images the heart live using ultrasound. I was nervous, joking with the tech that “Oh! ¬†That doesn’t sound good!” when she listened to my heart. She laughed and quickly pointed out that I had no idea what I was talking about. She was right. ¬†The doctor came in and said that the test had shown no abnormalities whatsoever.

This was followed up the next day with a heart catheterization, where they shoved a probe directly into my heart via an artery. Again the doctor expected to find something. ¬†Again, he found nothing. ¬†He told my wife and my mother that what he saw on the screen was something he didn’t often get to see: ¬†“a young, healthy heart” with clear arteries displaying plenty of branching.

Later that day, my heart kicked itself back into sinus rhythm. ¬†I actually felt it happen. Suddenly something changed and I could think and see more clearly. I asked the nurse in the room and she confirmed it. My EKG continued to show a “suppressed Q wave” that I later learned was indicative of a “right bundle branch block.” ¬†In short, there was a problem with the electrical conduction system taking signals from my brain to my heart, but apparently it wasn’t serious. (Of course, I’m just parroting smart things other people are saying. I really don’t understand it that well. Dammit Jim! I’m a doctor, not a physician!)

One thing that occurred to no one was the possibility of a recurrence of Lyme Disease. ¬†It turns out, however, that the situation I had been experiencing had all the hallmarks of a classic case of “Lyme Carditis.” The Lyme bacteria and co-infections can inflame the pericardium, the protective sac around the heart, and sometimes even the heart muscle itself. It can interrupt the heart’s electrical system in a very serious way, leading to permanent damage. One doctor, Oncologist Neil Spector,¬†suffered from untreated Lyme watched his heart degenerate to the point where he required a heart transplant! As the Lyme doctor currently treating me noted in our first interview, his story sounded exactly like mine. (With the happy exception that I’m now receiving treatment, apparently/hopefully before irreparable damage has been done.)

I was able to go home the next day. The experience had cost me (or at least the insurance company) better than $20,000, and I had discovered…nothing. ¬†In fact, the doctor’s quote to me, as he was informing me of my discharge was, “Well, these things just sometimes happen, you see?”

They say that ignorance is bliss; I can attest to the fact that it isn’t. Not only is it a form of slow mental torture, it can also be simply dangerous. But more on that in my next post.

Symptom Sorting 

Even Jack has a headache….

Ironically, ¬†I once promised myself I would never be the kind of blogger who bored the internet with posts on what I had for breakfast or every time I had a headache. I guess I didn’t ever anticipate writing this sort of blog, where posting about things like that kind if makes sense….

As I read to my littlest the other night from The Silver Chair, it all, “just shows how little anyone knows about what is going to happen to them next. ”

I’ve been on the antibiotics for a little less than a week and it is increasingly clear why they’re called anti-biotics. I waiver between feeling decent and feeling awful. The worst so far is the headache. It’s moved from the right rear quadrant, to the front right, and has now settled in above my left eye.

(I’m not complaining. I’ve friends who suffer with real migraines¬†for whom this little one would be a relief. Whenever I’m tempted to whine, it always helps to remember those who have it worse than me. It keeps it all in perspective, and makes it easier to tell myself, ¬†“Suck it up!”)

I do understand that, most likely, what I’m experiencing is the infamous “Herxheimer” reaction. The antibiotics are killing off the “bugs” and, as that happens, my body is flooded with toxins from the process. I just have to wait awhile until my body purges it all (including the drugs themselves).

It is interesting that the headache pain started and was worst right where the Bells Palsy from my initial infection was situated. It could be coincidence, but, if not, it is a hopeful sign that the drugs are killing something that doesn’t belong there.

The more annoying issue, for an analytical soul like myself, is sorting out the meaning of the various symptoms. All the signs of herxing are vague enough that they resemble the early stages of potential serious side effects from the medicines themselves. Is this a normal headache or the beginning of intracranial hypertension, where the blood pressure around the brain ramps up and can explode vessels? That stomach pain: just a little gas or a severe reaction in the intestines? I feel little dizzy now. Is that my heart kicking into afib?

If you give way to your imagination, you’ll catch it supplying “facts” that are really wild guesses, and those guesses (invariably worst case scenario) quickly transform “imagination” into paranoia. It’s easy to see why ERs are flooded with people who don’t need to be there.

There are several ways to deal with this, I think. At least, ¬†this is what I’m trying:

  • Make sure to talk to our doctors and to ask for clear explanations of what should worry us. ¬†Don’t just assume we know. Ask him/her to describe what each problem should feel like and what course we should take if it happens. Not every problem will land us in the ER.
  • Look up those medicines and, if we see something that worries us, decide on some clear, specific tests we can perform or standards we can apply. For example, one of the medicines I’ve been given can cause a rare side effect that cause a the heart to race uncontrollably. ¬†In my case, ¬†that’s a real concern. ¬†So, if I feel light headed, I check my pulse with an app on my phone. If it ever breaks into the 100s (when I’m not working out) I’ll know to be worried. Otherwise, get on with life!
  • Distract yourself. Go for a walk. Take a nap. Play a game. Read a book. Binge watch something. Obsessing over things like this is not only unhealthy, it can become a self fulfilling prophecy. We stress ourselves ¬†out over the possibility of our bodies ¬†freaking out, and so our body freaks out because of the stress!
  • Oddly enough, it is worth remembering we also have a positive opportunity here to focus on trust and to meditate on God’s Truths. It is very easy to talk about trusting Him when things are going well. It is also easy to throw ourselves upon Him when we are in desperate need. The grey area times, like the one I’m facing now, offer a unique chance to really apply trust when the outcome has yet to be determined. We aren’t forced into His arms neither are we blissfully unaware of the need. We have the best opportunity to be intentional about it.

Of course, if you’re really, really nervous, if you really think something may be wrong, trust your instinct. Get checked out. It’s always better to be told you’re overreacting than to find out later you weren’t….

But now I’m going to follow my own advice. Bed is calling, and with it a good book!

2013: The “Year of Suck”

Phinizy Swamp

For those intrepid souls actually taking an interest in this gripping saga, you’ll remember that I was “done” with Lyme back in 2008.

Welcome to 2013, known not-so-affectionately around our household as the “Year of Suck.”

From 2008 until 2012, I was exhausted almost constantly. No matter how much I slept, I never felt rested. I also noticed strange chest sensations every now and again. There was one in particular that felt, I thought, as if my chest was a tiny piece of the vacuum of space–like it was turning itself inside out. ¬†I wrote it all off as no big deal. Stress at work could explain it. I’m getting older, right? ¬†And who has time to be sick? I have my girls to care for.

Besides, I would get in shape in fits and starts–often via hiking–and when I did, I would generally start to feel better. So, surely, I just needed more exercise. That’s it. Yeah.

Then, in January 2013, I attempted to make a career change in the hopes of getting closer to my family. As an only child, I felt (and feel) duty bound to be available to take care of my parents, and it made sense to move sooner, when we weren’t needed, rather than wait for a crisis. So, we relocated to Augusta, Georgia and I started working as a government contractor. It sounded like a new adventure!

And it was an adventure–just not at all what we expected it to be. It turned out to be the really nasty, uncomfortable kind that more than makes you late for dinner! Within six months of the move, our stress-levels were off the charts. ¬†Contracting work is never “low stress” or particularly stable at the best of times, but mine changed so often I never had a chance to even get my feet under me.

When I signed up, I was told my lack of experience was no problem–that I would be in training for about a year before they turned me loose. ¬†Okay. ¬†No problem. ¬†Sounds good.

Second day on the job I was told, “You’ll be about six months in training.” ¬†From a year to six months? ¬†I like to think I’m relatively smart. I can handle that.

End of Week 1, the boss walks in: “With the campaigning season coming up, I’m going to need you spun up and ready in four months.” Right. ¬†Let’s do this.

Beginning of Week 2: ¬†“We’re running a little short on analysts. I need you all to be ready in six weeks.”¬†Six weeks, eh? That’s only 46 short of a year, but who’s counting?

End of Week 2: ¬†“Congratulations! ¬†You’re out of training.” ¬†You’ve¬†got to be kidding me?!

No big surprise, I wasn’t up to snuff yet and had to be sent back. The guy I worked with this time was a great analyst, but it was perfectly clear that he didn’t want to be tied down to training me. To add to it, he would sometimes foist me off on another analyst lead from another company (One who knew something about teaching, structure, and patience), who, by the end of a day or two, had me turning out products with some confidence. Then, when I came back to my main trainer, he would tell me to not do anything the other guy he sent me to train with told me to do.* We can further add that, having never served in the military, I had bad habit of coming off the wrong way, no matter how hard I tried. Being “myself” didn’t work. Neither did trying to talk to people about the things they talked about. (At one point I spent weeks listening to one guy’s epic saga of dog poo chucking from his yard into the neighbour’s and what he would do if the neighbor threw it back.) Even minding my own business and doing my job seemed to bother some people.

I was also maintaining ties back to my old life as a college professor. ¬†(I generally like to keep my options open, and this only made sense with a transition this big. If things went south, I wanted a fall back to be able to feed my family.) My bosses there had graciously transitioned me into a fully online role (something I was very grateful for, especially as things developed). I was teaching four classes and managing a team of graduate students who were also teaching classes. It was the least of my worries–but it was another worry nonetheless.

In the midst of this, my wife, who had suffered from schizo-affective disorder, visited her new doctor. He took one look at her medication list and said, “You know this one here, Seroquel? You have a 5% cumulative increased chance each year of parts of your body just locking up and never working again. You’ve been on this ten years? We have to get you off of this medicine right now.” ¬†Unfortunately, what the makers of Seroquel neglect to mention when they market their drug is that coming off of it is literally akin to coming off heroin. My wife suffered for months from massive mood swings and “itchy blood” where she would scratch her skin so hard that she scarred herself. This left her unable to sleep more than a few hours at a time. ¬† With both of our fuses so short, there were nights we argued over some little, stupid thing from dusk to dawn. ¬†Seriously, ¬†the sun would be coming up and we’d still be going at it. ¬†And then I would have to go to work again.

Were this not enough, while all of that was going on, my oldest daughter (number 2 having not yet arrived) began having panic attacks.

So…we had just moved to a new area; I was trying to learn a whole new career in constantly changing circumstances while maintaining a door into another one; I was trying to learn a whole new social culture; I was sitting up into the wee hours of the morning scratching my wife gently so she wouldn’t gash herself and draw blood; I was putting my daughter back to sleep from night terrors. (Did I miss anything? Probably.)

And then one day I went into work, as usual, sat down at my station with a Coke and got busy. I don’t recall how long I was there, but suddenly my vision began to grow dark. ¬†A tunnel was closing in. I can remember seeing the Coke sitting on the desk, at the center of an ever shrinking circle. There was no pain, no discomfort. Then, as suddenly as it had started, it stopped. ¬†I knew something was very wrong. ¬†I checked my pulse–it was all over the place!

I almost sat back down at my desk. I didn’t want to look weak to the team or my trainer. I just wanted to get through the day and get home. Still, my mind was clear enough to know that if this was even a hint of something serious, I needed to get myself looked at. No one’s opinion in that building mattered if I was dead, after all. So, I checked out and headed to a walk-in clinic not far from our apartment. I expected they would tell me to go home and have a good rest.

They didn’t.

Within minutes of the doctor listening to my heart, she had me hooked up to an EKG. She told me that my heart was beating like I had suffered two or three major heart attacks. ¬†She told me to call my wife and to not even¬†think about going anywhere. As I heard the sirens of the ambulance screaming into the parking lot, I felt the familiar chest sensation–which had suddenly taken on a new meaning.

Yep. This wasn’t a good year.

_________

*It quickly became clear that there were no real standards in that shop. I don’t mean quality was low; rather there was no agreement on what a “good” product looked like (though they could spot bad ones easily enough). That reduced everything to the whim of the person checking your work and made personality and politics paramount.

 

The Sickest I’ve ever been…

Melton2007
c. 2007, 1 year before Lyme hit

Well, if I’m going to take you along for the ride, I suppose you’ll need a bit of background.

 

My battle with Lyme began in the mountains of Virginia, where I lived with my wife and young daughter. In the summer of 2008 I was teaching an intensive and noticed that my knees were getting sore and my back was hurting. Within another day or two I was as sick as I had ever been. A high fever racked my body. The only way to stop the chills was by sitting in a shower of scalding water. By the time I made it to the doctor’s office, my fever was 104. Thankfully, the doctor at the little walk-in clinic knew his stuff. ¬†He took one look at my blood work and said, in effect, “Well, this says you’re as healthy as a horse, but you’re obviously as sick as a dog, so this must be tick-bourne.”

It also helped that while I was sitting in his office, the Bell’s Palsy kicked in. ¬†We found the bulls-eye rash later. I spent the next few weeks looking like a zombie from one angle and normal from another. Thankfully, I retained enough control over my eyelid that I could close it. The most annoying thing was trying to go to sleep. The minute I relaxed, POP! that stupid eye would open and I’d have to start all over again. I eventually figured out a way to wedge my eye into the pillow long enough to drift off. For some reason, once I was asleep, the eye stayed closed.

That and biting my freaking lip when I would eat were probably the two most annoying things.

I remember when the fever finally broke. I was sitting in a chair on our cabin with a cool rag on my forehead. Suddenly, I could relax again. No shivering!  I finally got some real sleep.

Well, a round of anti-biotics and anti-virals later, I was feeling much better and we thought we were done with it. Close call, that! Move on with life!

(Fellow Lyme Sufferers can allow themselves a snigger at this point! ¬†They know what’s coming!)

Continue reading “The Sickest I’ve ever been…”