I try not to make plans for specific things. Like, even if I want to volunteer to do something I don’t. I learned to stop. I just keep it in the back of my mind and show up as added, unexpected help if I can. It’s much better received than not being able to make it or saying that I’ll try to. I plan doctor’s appointments and very few other things.

The problem then is that I don’t make plans with my friends who need to have a set plan penciled in their busy lives. I get it. I used to be that busy, but again I can’t make plans. I do very little with my friends, and after 11 years of that my friend list has gotten very slim. We’ve drifted apart.

I have family that says they understand what I’m going through because they have an illnesses that causes fatigue. They actually tried to tell me how to handle fatigue. They literally told me that you have to plan ahead; you have to rest for a couple of days before you have to be somewhere.

I’ve battled PH for 11 years now. I’ve tried everything. To me, it’s absolutely crazy to have someone tell me how to handle PH and fatigue. PH is different. It’s a minute by minute disease, not day by day. Others just don’t understand, and it’s driving me mad.

People make assumptions and then judge us upon their broken assumptions. It’s so frustrating.

I was hoping someone had ideas that I haven’t tried or thought of. I suppose at this point, I just need to hear that that you all understand and that you can relate because…

And so for anyone else that needs to hear it, “I get it! It sucks! You are not alone!” I wish I could help.

LawnaAtkins,
That was a really profound explanation that you gave for common sense weighted deal with people and having let them down etc etc your words really ring with me thank you. Everybody have a great evening.