Last month I was diagnosed with primary biliary cirrhosis. Incurable, autoimmune liver disease. Symptoms (apparently) - crippling fatigue, itching so bad it can cause suicidal ideation, joint, bone and muscle pain, early osteoporosis, brain lesions which cause memory loss, confusion, inability to concentrate and eventually liver failure resulting in death (unless transplanted).
Some people go from diagnosis to death in 1 - 2 years, others remain asymptomatic for up to 15 years.
I am currently 42, with 2 young daughters, live an active life, love travelling, exercise, skiing and am really struggling to come to terms with the potential loss of my future, while knowing that I must make the most of the healthy time that I have.
I currently feel that I want to travel as much as I possible and enjoy seeing the world with my children while I am well enough. I'm planning trips that are only available if they miss a couple of days of school next term (eg Greek island where flights only leave on a Monday). Do you think this is reasonable? Part of me wants to explain the situation to school and say that I'm going to take them out as I see fit but I wonder if this may be part of losing the plot slightly.
Anyway. Thanks for listening.
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Life-limiting illness
Dealing with new diagnosis
10 replies
kitsilano · 10/01/2014 22:02
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