One of the many difficult things regarding lyme is that so little of the disease is revealed to the outside world. Of course, there are also clear physical symptoms – from the classic “bulls-eye rash” (erythema migrans) to Bell’s palsy, swollen joints, wheelchair-boundedness. Still, most of the problems caused by lyme are hidden to everybody except the carrier.
The exterior of the body might be mainly intact even though the inside is in a state of total chaos. That is also confirmed by the many friends and acquaintances contacting me since I started to blog about my fight against the disease, expressing astonishment and dismay over how bad a shape I’m in.
Very few want to be sick. Very few tell even themselves how bad it really is. It must be due to some kind of survival instinct. Although you know something is terribly wrong, that there’s no way it can only be about psychosomatic symptoms, still you hesitate to lay the cards on the table.
Partly, this might be out of fear for the definitive. Still, I’m pretty sure that the biggest reason why you sit in the front row, watching your own body decline, is due to resigning to the fact that nobody seems to understand you.
When one has met enough people in healthcare examining you through a downpipe (thanks Mats Lindström for that apt description), you arrive at a point where it all becomes too much. Then you stop expressing what’s happening inside – to others, as well as to yourself. You join the descent, paralyzed.
Instead, you bite the bullet, and do your best. Writing it off as age-related problems, as lack of motivation, becoming an expert in tackling the problems of everyday life in innovative ways. Leaving the bicycle for the car, sleeping a lot, letting meetings away from home become a three-day project of which two days are all about traveling in a way that your body can handle.
So little is seen on the surface, but still there are clear signs for people close to you. The walking strides getting shorter, slowing down, you becoming silent when the pain hits. Detaching, keeping to yourself, when all your focus is on not fainting, or riding out chills that suddenly have appeared out of nowhere.
I have become really good at masking my physical problems – as good, in fact, that I now need people around me in order to notice the positive trend. I do become better, you see, but have a hard time grasping it after all these years of dodging.
My wife is amazed by me walking brisker and for a longer time that she has seen me do in years. My hairdresser made a surprised remark that she didn’t have to straighten me up once a minute – a result of me not leaning to the right anymore in an attempt to relieve my body, in order to avoid cramping.
Something is happening. Right now I have five of eight treatment weeks behind me, and the counter-attack – antibiotics, a change of diet, strengthening my immune system – starts to have an impact. When in doubt, I can simply check my painkiller pillboxes – the pills do not vanish quite as quickly as before.
The bearing is right. It’s still mostly baby steps, and set-back days occur without any logical explanation, but still.
I barely dare to write this, as the disease so many times before in such a profoundly cynical manner has crushed the few moments of joy along the way. But now I have faith – I believe that a change for the better is happening. Indeed, I don’t even have to move mountains, fighting off a particularly nasty bug is well enough.