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.

I've started reframing what 'letting someone down' or 'disappointing people' means. If I am continuously agreeing to things that I KNOW I have a high chance of not being able to do, and people are continuously allowing me to get away with disappointing them then there is some work I need to do and it starts with saying no. Also, it starts with getting real with myself about what I AM able to do and what I want to do then after that, it comes down to talking with the people who care about me or who I need to be involved with (thinking workwise) and saying "I cannot do this thing that you would like me to do but I can do this, would that be okay?". That way, I'm not wallowing in my grief and I'm not setting other people up to have higher expectations but we can come to a middle ground which will serve all of us better.

I'm really sorry if the answer I had was not what you were looking for - I was just trying to share what my experience has been and how I've handled it from the perception I had of your question. Maybe I am not reading what you asked in the right way and once again, I could have clarified. I understand what you are feeling in the sense that a lot of what happens to people with conditions like this one does not have clear cut answers or a cookie cutter band-aid fix, and it's often at the expense of our mental health when others just go on with their life. I'm here if you ever want to connect, as I do have been struggling with some of these concepts.

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.