I was diagnosed two years ago, after assorted docs made assorted differing diagnoses. It was an enlarged spleen that finally led to the correct diagnosis, despite my GP convincing himself that the pain was, in fact, my kidneys.
Anyway, I consider myself lucky, as I am still able to work and carry on reasonably normally. But I'd really like to know how others cope with the nausea and tiredness. Some days it's almost unbearable, and it seems to have a rhythm, a pattern all its own. Every six weeks or so I'll get physically drained and absolutely everything's a struggle. I'd love to hear from anyone else that suffers, as well as any coping strategies.