I was diagnosed with ET in late August with fatigue and lightheadedness being my primary symptoms. I'm JAK2+ and my latest platelets are 800. I take a daily aspirin.
My oncologist has no idea what to do and has told me that I'm her first ET patient. She says the chemo is "evil" and she won't start me on it till my platelets are 1500.
This week my community in Northern California (I'm a eldercare executive) received 70+ evacuees from a retirement community evacuated due to fires. I worked 12-15 hour days. By the 4th day I completely came unhinged. I was so tired and my head was pounding. Also my thoughts weren't clear...it was as if my mind was getting pixelated and I couldn't see the full picture. My colleagues thought I'd lost it and were pitying me ( they really have no idea what ET is). I know I overextended myself but the situation was dire and I had no choice.
How do you explain ET and your fatigue to people who have no idea what you're going through? How do you deal with the fatigue without feeling like you're letting people down?
Thanks for your help.