LymeDiaries: What is disease & what is Just... Life?
There's something wrong. I have vomit stinging the back of my nostrils, that sweet acid smell as I try to keep the food down while sitting on my bathroom floor. I'm google-searching as I always do when I experience strange sensations or symptoms- wondering If I am crazy or if another person affected with Lyme has experienced something similar.
I was on my way to a photo-shoot when all of a sudden my eye-sight went blurry, while driving, and I panicked. Then you do what you always do, you start to justify what else it could be, 'oh it's probably from all the screen time today' but then all of a sudden moving my eyes from the car in front of me over to the light above I feel like I am moving through water, delayed and fluid, the light is too bright, and then the strangest sensation of all starts to happen: it was as though my neck forgot to hold up my head up at random intervals and I would feel my head heavily drop forward until my body seized in response and caught it. Wait-Was I going to pass out? I've never passed out before. Is this what happens when someone is about to pass out? Is this a stroke? What happens to people when they have a stroke? I start to get anxious at the idea that I probably shouldn't be driving and can feel the familiar heaviness in my arms when I am about to have a panic attack.
I'm living on adrenaline. I haven't had as much time for self-care or rest, having time for myself is rare during the summer months since I am split between interior design and weddings. Both at their peak and needing constant attention and detail. When I get to my photo-shoot all I can think about is how I hope I don't have a seizure or pass out in front of my clients: a sure way to freak someone out and not to mention probably break my equipment. The stress sits heavy on my chest and I'm coaching myself through breathing; a benefit of being a yoga and meditation teacher for long. Luckily, I was totally myself, being 'in the zone' allowed me to totally ignore what I was feeling and push through the strange symptoms in my body. My clients fill me up with so much joy, the anxiety of the unknown melts off my shoulders and I am thrown in to the moment with them, their love, and their stories. The shoot is a dream, the light, and their playfulness. I can't wait to edit the photos.
When I got back in the car the adrenaline of my shoot carries me home. I am beaming with the success of such a beautiful night and once the adrenaline wears off. I can feel the nausea creeping up in my throat. The fatigue and the slow-motion of my brain fog coming back to settle in. The anxiety of not knowing these new things puts me in a tail-spin of insomnia and google-searches. That's the thing about having a disease that is so multi-systemic, it affects all areas of the body and can constantly change and create new symptoms. I have repeated symptoms like muscle twitching that hasn't relented for almost a year, but every once and awhile a new symptoms pops up and I am left in a strange limbo of wondering: is this disease or is this just life? Is my treatment working? Or is it making things worse? Am I getting better? How does one tell when every week brings something different? It's a mind trip that I don't think anyone else can understand except for those who live with some type of chronic illness.
The next day I spoke with a Lyme ND and she told me what I was experiencing was another symptom of the neurological issues a lot of Lyme patients experience. It wasn't a stroke or a seizure. It was neurological Lyme. It wasn't just life, or fatigue, although my being tired probably doesn't help. I can't operate at high speed like I used to. I like to joke that I am high-functioning-chronically-ill person. I don't stop, I don't recalibrate, I just keep moving forward at the warp speed that I have always done. Lyme hasn't slowed me down and If I am totally honest- I really don't want it to. I think slowing down would mean accepting that things aren't the same anymore and I am really grasping on to keeping my life the same. I like my life. I like the speed. I love my job. I love all the adventures and high pace of it all. I like being in motion. I'm not ready to slow down. Not yet. But if I want to thrive with this disease I know that I am going to have to. Either the disease will make me against my will, like the days where I struggle to walk without pain, or I start to build my life around the reality that I am sick.
Here is to the beginning.