A Day In The Life Of Lyme Disease

The alarm rings and once again, it’s too early in the morning. It had been another sleepless night, tossing and turning, trying to get comfortable, laying there wide awake yet so completely exhausted and thinking about why it had to be me. Why did God allow this to become my life? Why me?

Some nights I would cry in bed next to my husband, who had no idea I was so depressed. Some nights I would sob on the cold bathroom floor, begging God to either take away the misery and suffering of Lyme disease or take me home to be with Him.

The days and months had turned into years. My children were growing up without a mother. Did they even understand how much I wanted to do for them and with them and I couldn’t? Would they later be bitter toward me or scarred for life because they had a chronically ill mom? Joint issues and week-long migraines, along with cognitive issues, were blurring everything together. It felt so long and yet so short, looking back.

Most days, I would slowly move to get up, gently putting my feet on the ground, not knowing how much my body would hurt once they hit the floor. I would stumble to get my clothes changed, dizzy from the ongoing imbalance and sometimes vertigo that was my constant companion, along with the pain.

And the fatigue... It’s like nothing you can imagine unless you’ve been there. I took the kids to school and the 15-minute trip, along with the wait in the carpool line was enough to take me out for the whole day. Back to bed I’d go once I managed to get back home. Sometimes driving, I would almost get lost going home and that’s when panic and anxiety would come to visit.

The frequent doctor’s visits were too far away. By the time I got there and came back home, I couldn’t do anything for a week. The exhaustion was crushing. There was no willing it away. I’d be in the middle of making a simple dinner and not be able to stand up for one more second. I would have to abandon it, saying to my husband, “I can’t finish. I have to lay down.”

And showers? What are those? Showers wore me out. It took up to an hour and half to recoup from simple hygiene tasks and I started to just wear my PJs out in public. After all, the teens do it, right?

Which leads me to the grocery store. Every time I would go, I had to park in the same spot or at least the same row. My forgetfulness meant that I was wandering too long for my what-seemed-to-be-90-year-old-body. If I forgot something at the opposite corner of the superstore, I would tear up and ask myself if we really needed the item. I just didn’t feel like I could make it that far. Then the parking lot was always a source of stress. Half the time I couldn’t remember where I parked and many days I thought about calling my husband to tell him the minivan had been stolen. And I’d talk to myself, “Vickie, snap out of it. THINK. Where is it? Gather up whatever remnants of energy you have to FOCUS and find the car.” And finally there it was.

The drive home was always more talking: “Stay awake. You can do this.” My biggest horror was potentially getting in an accident and hurting someone else. I didn’t care so much about myself at that point, but I didn’t want to be a menace to society.

The kids would come home quietly to a darkened house where their mother’s door was closed and she was sleeping. My children learned to do things for themselves and not wake me up unless necessary. The guilt was deafening. The up side was they learned a great skill for life.

And then there was dinner. It had to be made from scratch because I had grown so sensitive to foods. No gluten, no dairy, no sugar, no inflammatory foods allowed. And that took up the rest of my energy after I got up from my afternoon naps.

After dinner, Netflix was my friend. I lay in bed and rested more. I had stopped taking the kids to their activities. My husband had to do double duty after working a long day at his job. Many times I couldn’t even do the family laundry – it turned out to be another great skill for the kids to learn to do on their own. Did you ever think about how much energy it takes to dig into the washer to move those heavy wet clothes into the dryer? If you can do it without thinking about it, consider yourself lucky.

Then the night would come and my life would repeat again.

This was my life from about 2007 until around early 2015. I tell the story because May is Lyme Disease Awareness month. Lyme disease is an invisible disease which mimics hundreds of other diseases. It’s often misdiagnosed as other things. I was misdiagnosed with lupus first, and I was denied social security disability for years mostly because I was young and “re-trainable.” I think it’s really because the disease is misunderstood.

These days, thanks to my many Lyme-literate doctors, becoming a master herbalist, doing my own research and trying just about everything ever suggested for Lyme aside from pharmaceuticals, I’m much better. I live a great life and function pretty well. In fact, today I’m happy to go to my son’s track meet. There are days still when Lyme can rear its ugly head and I know what to do, but if you happen to see me around town and I’ve parked in the handicap spot, remember that Lyme disease is invisible, and I felt I needed to park there that day.