Hiiii - how does ET affect you?

Hi ive been reading comments on et and how it effects people and i cant seem to find anyone experiencing the same as me so i got diagnosed 8 years ago at 22 now nearly 31 

I started to feel tired and just awful so after blood tests and bone marrow aspiration i was diagnosed now on a bad day i have excruciating pains in my feet and legs and physically cant walk pains in my chest night sweats vision loss dizzyness and platelets are 1000 odd also now have raised white bloods cells for a good few weeks has anyone else experienced zny of this?? Tia xx