Helsinki, June 9, 2015

Today I have a day off from the clinic. From now on I get the IV-antibiotics every second day, and take care of the other medication by myself.

As often tends to happen when I have an unscheduled day, I woke early – at least by my standards. Due to lyme, I have mixed feelings about mornings. On one hand, the joy of waking up without pain. On the other hand, the moody anticipation of the pain that will hit me once I get up.

It is so easy to fool oneself, hope for the best. During the last years I ‘ve made a routine out of staying in bed – checking my emails, messages, news aso. on my cell phone. I’ve told myself as well as my wife that it’s a soft and easy way of starting the day, avoiding the nuisance of having to deal with such practical matters when I open my work computer.

That holds true, but that’s not the reason behind my morning routine. The very first thing I do in the morning is that I’m reaching for my pain killers. After that, I wait. Wait for the medicine to kick in. I bide my time trying to do meaningful things, hence the horizontal start.

The pain killers don’t ease the pain as much as I would like, but they soften the peaks a bit. Off medication, I have a tendency to compensate too much, use different muscles when the pain sets in. That strains those muscles, and thus a vicious cycle is created.

Wandering pain is a phenomenon that many lyme disease patients are only too familiar with, including me. My biggest problems are normally found in my upper body, particularly on the left side of the neck, upper back, and chest. This doesn’t mean, however, that I only have pain in that region.

It’s more the rule than the exception that after a day with pain in those areas, I have no symptoms right there. Instead, the pain has moved somewhere else – to the right side, mirroring the former pain, or to the lower back, or down to the soles of my feet. It is as if there is no logic at all, and there is none – if you only take joints, muscles and ligaments into the equation.

But at some stage, you realize that the nervous system is the culprit, and that it certainly isn’t just about “a nerve that has got stuck” (I can’t even count the times I’ve been given that diagnosis… just as if one, gigantic nerve runs all through the body, causing problems in different areas.)

Then it all suddenly makes perfect sense. That also explains the strange chain reaction that occurs sometimes (pain -> nausea -> tinnitus -> extra heartbeats -> bloated stomach -> spasming colon -> dizziness -> fainting), seemingly out of nowhere.

The nervous system is running amok. Sometimes it feels like being a puppet in a puppet theatre, with a devilish puppeteer pulling the strings just to hassle you. That is certainly not far from the truth, either – the spiral-shaped bug drills into joints, organs, even into bone, and takes command.

It has to be driven away by force. The fight continues.

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