Lyme is often an invisible illness. Walking down the aisle at Target, I look like any other (tired) young mom buying toilet paper. Sometimes, when I’m out with my family, I look wistfully at the courtesy wheelchairs offered in many public places, wanting to rest so much, but feeling like I’d appear a fraud if I used one.
If you look closely though, there are a couple of visible signs. First are the dark lines under my eyes. Sometimes they are partially masked by layers of concealer and highlighter, but even that often fails me.
The other is what I refer to as, the right side of my body falling off. That is not really what’s happening, but I find comedic hyperbole comforting. My right eyebrow, eye, side of mouth, ear, and shoulder are all lower than my left. I’m not sure exactly when this started to happen, but that is also the side of my body with the headache, and “drooping” facial features are a common neurological symptom, so it all makes sense. I have also experienced tingling to the point of pain in my right limbs, but of course, no one can see that.
I can’t ignore this physical change because it is literally looking back at me in the mirror every day. It makes me worry about my brain. Still, I am fortunate. Patients with late stage neurological Lyme can lose speech and have limbs go completely numb.
Lyme can make life topsy-turvy. Having a crooked face can be categorized as “fortunate.” And my definition of good days vs bad days is ever evolving.
About a month into my treatment, I have had a lot of bad days. Days when simply getting out of bed is like climbing a mountain. I have also (this week!) had some good days. On a good day, there is still pain – just less. On a good day I am still tired – but maybe have adequate energy for half of the day. On a good day I can potentially eke out 50% of what I used to be able to do in a day – but man, does that 50% feel good.
Test results coming soon. Next steps will follow.