I was diagnosed with a disease very similar to Lyme Disease called Tick-Borne Relapsing Fever which is caused by an infection of a spirochete bacterium called borrelia hermsii. Usually Lyme Disease is caused by an infection of borrelia burgdorferi, but any infection by a borrelia (borreliosis) is getting named Lyme.
At least we think it is hermsii. The various tests have a weird overlap, and are not 100% accurate. Yes, this caused problems. It is somewhat moot, since many of types of borreliosis have the same treatment: specific antibiotics.
We have no idea when I got the tick bite that infected me. Borrelia hermsii is probably not local to New England where I have lived for over twenty years. It is native to the Rocky Mountains which I visited thirty years ago. So, there is a chance I got it way back then and it just cycled in and out for most of my adult life. It is called “Relapsing Fever,” after all.
We just don’t know when and where I got it.
What we do know is that after several months of antibiotics, I felt better. Which was good, for about a year. Then it slowly came back.
But, Lyme can cause issues between the initial “I don’t feel well” and the final prescription of antibiotics. Since the major symptoms of Lyme are usually, “I’m tired and kind of achy all the time,” doctors want to make sure it isn’t one of the hundreds of other things that can cause that, from arthritis to zinc poisoning. For me, this meant close to a year between when I first went in with flu-like symptoms to finally getting a smoking gun diagnosis.
Now is where the mind games began. Am I just tired or stressed? Is it something else? Such as a cold or another minor health issue? Because the symptoms are so generic you can’t tell. If one of the symptoms was that your skin turned purple, that would be great! You’d wake up one morning, look in the mirror, call the doctor, and they’d give you antibiotics. You’d go to work or hang out with friends and they could easily see you were sick.
But it doesn’t work that way. It is invisible, even from inside.
Now, I want to talk about the symptoms, at least for me. At first it was muscle aches and fatigue. I honestly thought it was a flu at the time. And I mean fatigue. I was sleeping a lot, pretty much all weekend. I used up all my sick and vacation time at work, even taking unpaid days. Fortunately, my work was very supportive.
That's how it started. Then came the neurological issues, starting with memory loss. My memory was never great to begin with, so memory loss was one of the more serious issues. I got real good at taking notes or putting everything in the calendar; to do lists; the whole shebang. This made me very organized at work since I assumed I might forget almost anything.
Apparently, Lyme causes lesions on the brain.
At one point my girl-friend told me to put an upcoming event “into my brain.” She then clarified when she said, “my brain” she meant I needed to put the event into my phone’s calendar. I replied that I knew what she meant and that the pink thing in my head was only good for “chicken noises and sloshing sounds.”
I also had issues finding words, or understanding words. I had my hearing tested and it was fine, but the part of my brain that turned sounds into words wasn’t working. I would just hear mumbling.
In fact, this all could have been so much worse. It took a long time to diagnose, but it was, and there was a hard lab result to say it wasn’t just all in my head or depression. There is a treatment for it. It is a slow treatment and even after the disease is gone, it takes months to recover, but it was something. But, the treatment doesn’t always cure it; instead it can go dormant and not cause symptoms, but also not be affected by antibiotics.
Between the weirdness of the disease and the neurological issues, you start to doubt your judgement, especially when memory is also an issue. You wonder if you should take a day off and just rest, or is that the worst thing because you have to get back into shape and exercise? With the memory issues it is hard to tell if you are getting better or worse week by week.
Since there are no visible symptoms, and often, even from inside, no objective symptoms, it can feel like a bad night’s rest, or you overdid it the day before. Did I walk too much yesterday, or not enough? Then add some cabin fever to make it hard to be subjective, since you will get sick of your bed and your place after a couple of years.
As I write this, it is a perfect summer day outside, good for the beach or something. I might go out. I feel I should go out, since winter will be here at some point and I am wasting the day. Sometimes it is hard to not beat yourself up and call yourself lazy.
On the other hand, I have to rest after putting clothes on or taking a shower. If I talk to someone socially, my brain sort of runs out after an hour. Hard to keep a conversation going when you can barely follow the plot of an eleven minute cartoon. And I am better than I was.
I work in computers, so being somewhat less than social is just part of the workplace, and I can control how much information I need to take in at a time. I can also work from home, which is great when you are really sick, but adds to the cabin fever.
People talk about “invisible disabilities” or “invisible illnesses.” This is one of those, even to the person who has it. It can sneak up on you: you think everything is going well one day and then the afternoon hits and you can barely move. People will see you being active and assume you are healthy. Hell, I will see myself being active and assume it is over, and the next day I am exhausted.
I don’t have the answer to that, not even close. I try to “push myself, but gently.” Still trying to figure out what that means. There is just no way to know.
Am I cured right now? No one knows. Maybe? Maybe I will get a bout of it again.
This bring me to the emotional exhaustion that sets in. Even if your body is more or less able to function, you can just run out of cope. Cope is a limited resource. People only have so much willpower to be able to function in a day. Most people very rarely get really low on willpower; some people have never run out and don’t understand that it can run out.
But it can run out, and it can get to the point where you have very little in a day, even after a good night’s sleep. I have not found the Cope Potion. It is like a Mana Potion or a Healing Potion, in that it magically recharges your Cope, and like a Healing Potion, it doesn’t actually exist.
It would also help to have a Cope status bar, so you can easily see what does recharge it. Resting and reading or watching television or a movie does help, but only so much. Plus, when the cabin fever hits, both of those options stop working. I also have issues with reading more than a few pages at a time because of the brain issues.
Weirdly, sometimes an activity that is very enjoyable and recharging when you are healthy can become draining when you are not. Going camping can be a lot of fun, or it can be hours of packing and loading the car, followed by setting up the tent, and so on. A party with a lot of people can be fun, or horrible.
And, of course, these are all moving targets. What was exhausting the day before might be fun tomorrow. And sometimes what was fun five minutes ago is suddenly exhausting. It can turn on a dime. Not often, but sometimes you hit empty and never even see the “Low Cope” light.
This brings me to why I wrote this: I want people to understand that sometimes I just can’t. I know it is hard to deal with someone who might be having a bad day and just have to shut down with little or no warning. Or someone who never wants to go anywhere. It isn’t fun from my point of view either.
I hope I will slowly get better and more alive. I want to get better. I am learning to push myself when I can, and take it easy when I can’t, and to be okay with myself either way.
I don’t know what will happen.