When I started pacing, I was terrified of my rapid loss of function, so I took quite literally everything that I managed to find. In doing so, I made some mistakes. I hope that others can learn from my mistakes, even though every person’s experience of ME/CFS is different.
- I don’t have to be terrified of going over my anaerobic threshold. Yes, I want to avoid it, but sometimes it will happen, and it’s not the end of the world.
- I wish I had not tried to reduce my heart rate so drastically that I had to change all my behavior immediately. In order to keep my heart rate low, I went almost immediately to full bedrest, getting up only to go to the bathroom (and often lying down on the way to the bathroom even then), and kept that up for weeks. I now wonder what would have happened if I had done much of my resting in a recliner instead. Would my POTS be so bad? I wish that I had “tapered” my activity, as I’ve since read is advisable.
- I wish I had understood the value of good records. If I had it to do over again, I would record everything that I could bear to, even if I didn’t understand its meaning. For now, I find that too much data is better than too little. And I certainly wouldn’t erase my first couple of weeks of data if I had it to do again!
- I wish that I had used all of my devices from the beginning. If I had, I would have realized that my new watch was not registering my heart rate properly, and I might have realized earlier that I had POTS.
- I wish I had understood that there are three basic phases of pacing:
- Getting out of PEM and treating orthostatic intolerance.
- Stabilizing at a baseline, and understanding my safe baseline level of exertion. This is not a quick process! As I write this, I’m approaching this goal.
- Living at the baseline and letting it (hopefully) expand. I understand that in this stage, the heart rate becomes less reactive, so I will likely be able to do more activity within the same limits. Hopefully, my anaerobic threshold will eventually rise as well!