I’m very lucky.
So many people with Lyme Disease are really, really sick. They are in a lot of pain. They can’t get out of bed. They can’t go to work.
Fortunately, I’m not like that. My pain has been annoying at most and I get a little dizzy sometimes. My hands and feet get numb. I’m a little tired.
This is what I tell myself.
And for a long time, I kept doing whatever I wanted to do; early morning parenting plus a marathon trip to Target and the grocery store followed by a stop at Home Depot, then racing home for some office time and a workout (can’t skip the workout), then after-school management including pick-ups and drop-offs and homework (with a little screaming and shouting thrown in), topped off by dinnertime, nighttime parenting and, if necessary, working on a writing project late into the night.
Was I tired? Of course. Everybody’s tired. But these things needed to be done so I just pushed until they were done. I assumed that everyone was as tired as I was and we were all taking it on the chin because that is what life requires. And if I can do all this with Lyme Disease, I thought, then I must be okay.
But I was weak. In fact, it was a gym trainer who sent me to the doctor in the first place; she had been working with me for six months with absolutely no signs of increased strength — “how is that even possible?” she asked. And the mildly annoying pain in my knees and hips didn’t present in a normal fashion. She was concerned. Shortly thereafter, a wise doctor pushed down on my knee and, when I couldn’t push back, she said, “I think we should test you for Lyme Disease.”
The test was positive, showing I’d had it for a year or more.
I did what I was told and stopped eating everything that I loved and took lots of pills and even stopped exercising in order to heal my overburdened adrenal system. I paid attention when I was tired and turned for home even when my to-do list was undone. I listened carefully to my body so I could heed its messages; and I was a little startled by how often the message of fatigue surfaced. I wondered if I was getting more fatigued or if I had previously been seriously gifted in the art of denial.
The mildly annoying pain and the daily fatigue didn’t keep me from my weekly dance class, though. It was only once a week and it was my primary physical and creative outlet. It was, as they say, my thang, my jam, the only thing I had been doing since childhood that I never grew out of. I would just hold back a little bit and it would be fine; I still secretly thought everyone else was as tired as me so surely I could manage one carefully executed dance class. My dancing was lackluster and uninspired but it was still fun.
Until it wasn’t anymore.
Eventually I had to stop and grab the barre if I changed directions too quickly. I got a head rush going from plié to relevé; and very little dancing involves staying totally upright and facing forward all the time. I got injured easily and old injuries resurfaced for no reason, refusing to heal. And, most notably, when class time rolled around in the early evening, I only had enough energy left for the couch and the TV. So I stopped going. “I’ll be back!” I said. “Maybe by Christmas! Or after spring break! For sure by the recital in this summer! I’ll certainly be better by then!” It was embarrassing.
I thought my excuses and promises were covering up my embarrassing weakness (they weren’t). And I feared that everyone thought I was either lying or lazy (they didn’t). And when I finally publicly admit that I will not be back, I publicly cry like it isn’t just a hobby we all do on Thursday nights. I cry like I’m a member of the Dance Theater of Harlem and my feet just got chopped off. It’s still the one and only time I’ve cried over this stupid, annoying disease.
So it’s really no big deal.
I’m really very lucky.
for the time being,
I can’t go to my dance class and I can’t ride a bike and I can’t walk with friends who go too fast and I can’t go to Target and Home Depot in the same day and sometimes I wonder if my driving is okay (I’ve never spoken that out loud). I can’t do the things that all the other people do.
And I also know that if I weren’t a stay-at-home/work-at-home parent, I wouldn’t have been able to play this charade of “I’m so lucky, it’s really not so bad.” Because if I had had to be showered and dressed and sharp for a meeting with kids out the door at 8am, my denial couldn’t have survived very long.
Will I get better? Maybe. But’s it’s been a long time and I never seem to be symptom free.
I’ve followed every protocol for Lyme Disease from both Western and alternative practitioners; short course of antibiotics, long course of antibiotics, infrared sauna detox, intravenous vitamin C treatments, herbal supplements, vitamin and mineral supplements, detox protocols, epsom salt baths, anti-inflammatory diet (gluten free, dairy free, grain free, sugar free, caffeine free, alcohol free, nightshade vegetable free – there’s very little else to eat). Despite all that, I still don’t get to function like other people.
The moral of the story is that it’s tick season; many of you (and your children) have a higher susceptibility to the dreaded bite of the deer tick that delivers Lyme Disease. Some of you will be bitten, probably have been bitten, and nothing will happen. Others will get a bullseye rash and go to the doctor for a round of antibiotics and be done with it. And some of you will have mystery symptoms that go undiagnosed for years until you finally have to quit your job and lie down on the couch for a living.
Be prepared and do your homework. Seek out the rates of Lyme Disease in your area or the areas you’re visiting; if you’re near deer habitats — including urban and suburban environments — use a tick repellent and do a tick check when you come in. There are lots of designer and all-natural bug spray options but, just like sunscreen, the best insect repellent is the one you’ll use. Stay on trails and avoid areas with tall grass. Put your clothes in the dryer on high heat after being outdoors. Take a shower and scrub your body with a loofah sponge and peppermint soap (Dr. Bronner’s is good). And I hate to break this to you but tucking your pants into your socks is a good idea. I’ve gotten around this fashion faux pas by wearing joggers with elastic ankles and then applying tick repellent to said ankles.
It sucks that I have to be afraid. I should be able to enjoy God’s green earth without fearing it. But I guess I wouldn’t go for a swim in shark-infested waters based on the conviction that earth is a gift to be enjoyed without fear.