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

Seen in clinic today. Bloods remain just about in normal range. They have agreed a very gradual reduction in steroids from tomorrow. Going down by only 1mg per day for one week at a time. To be seen again after more bloods in 4 weeks. Also to be referred for another scan to check all is well in the liver/pancreas area. If this shows any problems, then for an endoscopy to check for complications such as portal hypertension/varices etc. which is not uncommon with this condition. Am having a consultation at the nuffied on Weds to see if the spider nevi can be lasered.....hepatologist not keen as she thinks they will just return due to the condition being chronic...and this would be a waste of money. Have tried to expain about self esteem and how when I look in the mirror I no longer recognise myself. She felt that self esteem might be worse if the spider nevi returned after having had treatment. We agreed I would have the consult, but not proceed with treatment before feeding back to her. For her part, she will research the benefits/ success of treatment for people with  chronic liver disease.

Had my first bone scan today after 13mths of steroids. For once, it appears to be good news, and the steroids haven't caused too much dammage to my bone density. Am still really struggling with stamina and having to go back to bed for a few hours most days. Must be down to the condition as bloods were normal last week.

Clinic today. Bloods now normal....shame I feel anything but normal. They seemed keen to consider increasing the Azathioprine, to see if I could reduce the steroids. The rationale is that as it is prescribed according to bodyweight.... now I'm 8kg heavier (thanks to the steroids) it could be increased and potentially be more effective. So basically, they give me a drug to make me fat in order to increase the other horribly toxic drug. If I hadn't been made so fat it wouldn't be necessary. Not sure how much more of this shit I can take. Despite bloods being normal, I'm to stay on 10mg pred for another 2 weeks....just to be sure. I have asked them to consider budesonide as an alternative to the pred (less side effect and more expensive, so better for me but not the NHS)..they're not keen

Well the job centre was interesting. Very public and very humiliating. It seems my employment support allowance will run out in March, and then I get nothing as I have more than £16000 in savings. I can (and will) apply for PIP payments which are non means tested, but will not be nearly enough to be able to manage on. I know I should be grateful I have savings, but somehow, having worked all my life and paid  all my dues, I foolishly thought the savings might make my old age more comfortable. As always,the harder you work, the less you get, the less you work, the more you get......something has to be wrong somewhere or is it me? Not entitled to a bean until savings are used up. Am feeling so thrilled that this bloody disease decided to join me for the rest of my life, we can grow old and poor together.
Bloods still out of normal range, for repeat Friday, Hosp next Monday. Weight out of control, all mirrors in the house banned.