I struggle to tell the difference between regular “tired” and PEM, especially because my triggers are so unpredictable

I believe I’m mild. I used to be moderate with dips into severe when I first got cfs. However I’m still in the diagnostic process and searching for answers.

I struggle to tell the difference between getting tired in a normal way, and getting PEM.

For example. This past weekend I went to a concert which is a rare treat. At the end of it, I felt like my legs hurt and my ears were ringing but I went home, slept well, and woke up the next day feeling ok. And was tired and low energy the next day. But didn’t have any weird or flu like symptoms.

Then, earlier in the week I was doing house chores and suddenly began to get hot flashes, internal vibrations, cold sweats, nausea, and had to lay on the couch for like 2 hours in order to feel somewhat normal again.

They say to not push through PEM, and to not do things that will trigger it, but it’s very hard when I don’t really know how to predict my body? How can a concert be fine but running the vacuum makes me feel sick?

I really really don’t want to get back to where I was two years ago when this began. For 8 months I was barely able to sleep. I was basically limited to lying on the floor in the dark for hours every day, and sitting on the couch drawing pictures the rest of the time just to get enough energy to shower or work an occasional half day sitting in my office. It’s my biggest fear and I attribute my semi-recovery to not working anymore and getting married so I’m no longer living alone and have help with things.

But I sometimes feel like I gaslight myself and tell myself I’m faking things when, like I said, vacuuming knocks me out even when I can sometimes go to a concert or hang out with a friend. I tell myself I’m just lazy and don’t have real PEM.