Hi everyone. It's been a long time since I last posted but thought I would update you on a few things. Good news is that I got awarded early retirement on health grounds at Christmas and that has made a big difference to my well being! Happy to talk through the process I went through with anyone, especially if you have a teacher's pension. I have also just managed to secure holiday insurance for a year with cover2go. They were brilliant. It cost me £60 only for my medical conditions and I have loads on top of my PBC. The normal insurance came to £70, so for £130, I am now covered for a year! So worth it for piece of mind.
Just one other thing, I suffer from chronic fatigue and can have an attack anytime, usually after a heavy week, lack of sleep or mental stress. A good day I will sleep until about 6pm, the worst attack was for 40 hours. Have had two of these in the last 6 months. I wondered if this is the same experience with others, or are you tired all the time. The hardest thing I find is the attitude of my family, some who are in the medical profession! They dismiss this and will say things like, you need to exercise more, which is very difficult when you're practically comatose in bed!...or it's just in my head and fight it!!! This upsets me loads and now I don't tell them if I am having, what I refer to as 'one of my days'. Even when I say the tiredness is very different from 'normal tiredness', and that even breathing is hard work, and I liken it to severe jet lag, doesn't really help them to empathise with me. Does anyone have similar experiences and if so what have you done to get people to empathise and not put it down to being lazy!!