The Disconnect

One of the biggest challenges of living with Lyme for me is the incredible difference between the good days and the bad. There is such a disconnect between the two. On good days, I feel like I could do anything while sick. On bad days, it feels like I’ll never be well again.

I have enjoyed a lot of okay, pretty good, and good days in the past few weeks. They were glorious. Living in a new place, with my son starting kindergarten, I have been meeting a lot of new people. I have been able to make conversation and even remember their names pretty easily! These sound like very simple things, but with the neurological troubles I’ve had from Lyme over the past year, they are truly monumental.

I have gone in for my butt injections, and after a short rest, been able to complete projects like unpacking boxes and organizing areas of our new home.

I have moved furniture, run errands, carried groceries up the stairs.


Good day! Festival! Train Ride!

I have done some of these things, and then more on the very next day. Sometimes going for a few days at a stretch of relatively normal activity levels with nary an eyebrow droop!

But then, a bad day hits. I had my fourth bicillin butt injection on Monday, and on Tuesday I hit a wall / herx / bad day. That bad day stretched into two today. I’ve been on the couch. I’ve been in pain. I’ve been in a fog. The joint pain is searing. The face droop is heavy. My energy is nonexistent. It feels impossible to wash a few dishes.


How can a wrist look so normal, but hurt so much?

On Monday, I installed track shelving in my son’s room. Today, I’m having trouble typing this.


Good day: Energy! Productivity!


Bad day: Full droop. Total exhaustion.

The sudden, major shift can feel disorienting, and is so disheartening.

Tomorrow is another injection and IV infusion, which means most of the school day will be spent at my doctor’s office. I’ll likely need to rest until pick up time, since the IVs make me pretty sleepy, making tomorrow my third day in a row of not being able to accomplish much other than being sick. I know good days will come again, but right now, it’s hard to see them.


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