Seen in clinic today. Bloods still in normal range so pred reduced to 5mg from tomorrow. Finding it hard to accept that I still feel so ill despite bloods having improved. Liver ultrasound due on 1st Dec and also to be seen in clinic for blood results that day. So fed up with the lack of energy, and hepatologists lack of awareness of how the condition affects your wider life; all they seem to care about is the liver enzyme readings being in range. Feel utterly exhausted.

Well life remains a rollercoaster and rather chaotic as usual. Prednisolone now back down to 7.5mg, with no obvious effects so far. I continue to try to pace myself and not overstetch what I can do, otherwise I spend at least 2 days paying for it. It's a fine balance between trying to build stamina, and not causing all out exhaustion.
I went for the consult re: spider nevi. Have decided not to proceed...as I am a baby and was surprised how uncomfortable the treatment was!! Will just have to get used to looking like this I guess. I have, however, agreed to and been referred for counselling. I need some help getting my head around this enforced change in lifestyle. One year in, and I'm still furious about it and feel trapped and unable to move on. I know remission can take up to 3 years but I'm really not very patient, and what if I'm one of the one's who doesn't reach remission? What if this is as good as it gets for me? Staying positive is increasingly hard work. I miss my independence. I miss my stamina, and I miss being able to plan anything. I hate that I am unable to work/be relied upon for anything.
I do however, love my donkeys.....and they love me