I think the most misunderstood component of Lyme+ is the way we appear to be doing fairly well one second and suddenly we are crawling into bed for a week long crash.

• “But you were doing so well! What happened?”

• “What did you do that made you get sick again?”

• “Is she faking it?”

All of these are fair questions – if you’ve never had chronic sickness.

There are two points I want to make about this:

1. When I am functioning at what appears to be a somewhat normal level, things aren’t really doing as good as they seem. Yes I am out of bed and yes I am doing more than I could before; but I still feel a great deal of pain and weakness – all the time. My head starts to hurt, my heart rate goes up and I get a little dizzy and nauseous – I recognize these symptoms and I may go rest a little to try to calm them down so I can continue, or I may start working harder to get done with what I’m doing because I recognize I am going to crash. Unless you’ve spent a lot of time with me, you won’t recognize this – you will see me suddenly stop what I’m doing and head to bed.
2. I spend a lot of time in bed – generally thinking about things I need to do. So when I am out of bed, I don’t want to take it easy, I want to get some things done. It doesn’t matter that I’m not well, I need to act like I am so I can mentally function as a healthy human being. But I’m not healthy. The sicknesses and conditions are all still there. Bacteria may be hiding or my body may have enough adrenaline or medicine to mask the symptoms for a minute, but I’m not well. I’m just getting a brief break from the extreme symptoms – they’re still there, they just aren’t as intense (for the moment).

Lately I’ve seen a lot of improvement. And I’m hopeful to continue to see improvement. But I’ve been here before and I know it’s always possible that I will start to take a turn backwards.

So I’m taking advantage of this time and getting a few things done while trying to stay focused on therapies and getting enough rest. It’s a hard balance – I don’t want to rest, I want to do as much as I can, while I can. But I also don’t want to push too hard and force a setback.

My doctors push the idea of positive thinking – I agree with them, mostly. I do believe if I think this will fail, it will. But I also know if I get my hopes up too much and then have a setback, I will be devastated. So I am thinking this is new and I have hope, but I’m mentally prepared to change directions (not give up) if this current protocol starts to fail.

For now – I’m going 90mph when I can and bring myself to a screeching halt when I need to rest.

Wherever you are in your journey, own the day. If you can get up and do things for a bit – do it. If you need to rest – let yourself do that. If you are feeling like your in a setback – don’t lose hope, take a minute and then switch directions.

We got this. One day at a time.