The most treacherous part might be the slow pace at which it all changed. Prior to my lyme infection, I was an active person. I was fly-fishing, practiced aikido, played football (soccer), went running, wore the roads with my rollerblades and nordic ski sticks, traveled a lot, did handyman work, lifted things and gave a helping hand when needed.
As of now, fifteen years past that summer of 2000, I’m 45 years old. On a good day i can climb the stairs one floor. During bad days, I have to rely on lifts and escalators.
I can’t carry anything heavier than about four pounds for a longer distance without getting problems. Neither can I pull a suitcase any more than fifty yards.
I struggle most with static positions and monotonous movements. I just can’t sit in the same position for any longer than a few minutes, and that’s why I frequently change my body position whenever possible. That possibility is not always there.
If I drive my car more than sixty miles, I will be in severe pain the following day. If I drive really long distances, my body aches at the moment I step out of the car. To be squeezed into a tiny passenger seat on an plane is even worse, then every single step taken in the arrivals hall is one of agony.
I can’t walk for long before the pain in my neck, back and chest becomes unbearable. On a good day, maybe half a mile. On a bad day, a few hundred yards.
I don’t get a shortness of breath, but body spasms – much like a cramp under the foot, but a gigantic, diffuse one. The upper body pain is the worst, together with the whole left side of the body – from my head down to my toes.
Shortly after the spasms and related pain set in I get hit by sudden tinnitus, dizziness, and pinball-game guts. Later, if I can’t break the pattern, I get nausea and vertigo – the world around me starts to spin, faster and faster. Then, if I can’t lie down fast enough, I pass out and fall to the ground. This happens a few times each year.
I just stood in the kitchen, doing the dishes in the apartment I rent during my stay here in Helsinki. The plate rack was located just above shoulder height. When I had lifted five plates and five glasses up onto the rack, I had to sit down.
Neurologists I have consulted diagnose me with polyneuropathy. I call this late stage, active, chronic lyme disease.