I really don't know where to start. I was diagnosed Sept 13, finally lost my dream job in Aug 14, and had been on employment support allowance (£70 per week) from March 2014. This benefit is only paid for a total of 12 months, so was stopped in March this year. When you are put on this benefit due to illness, you are supposed to have a "health assessment" within 13 weeks of starting it. Atos, the company responsible for this, did not do my health assessment until 15th May this year (2 months after the benefit ran out!). This week, I recieved the report from them, that says that I am fit to work, and should start looking for a job straight away. Apparently, the "work coach" at the local job centre will tell me what work I am able to do. Only one problem, I remain signed off as unfit for work.....because obviously (to most people) having a life long chronic disease, that depends on complex medication and monitoring, means I'm not fit to work. I am intrigued to know, what job I can do which will allow me to
1 only turn up on days when I am able to get out of bed
2 let me have a two hour sleep every afternoon
3 let me drink/sit/stand/go to the loo whenever I need to
4 take time off for blood tests weekly, hepatology appts liver biopsies/scans bone scans/ eye hospital appts rhematology appts etc
5 take down phone messages incorrectly (due to brain fog)
6 burst into tears due to pain/frustration/anger at the whole thing
7 rest my oedematous legs whenever I need to?

Any suggestions/offers greatly received.

I shall, of course be requesting a reconsideration, and if still unsuccessful will appeal. The trouble with this condition is, hardly anyone has heard of it, research is limited as so few of us have it. I feel like I am constantly having to justify my situation to complete jobsworths . As if coping /living with it isn't enough, we should not have the added pressure of constantly jusifying it's effects.
I really don't see, why having worked and contibuted for 30 years, I should have to face this indignity.

Can't believe I haven't written anything since January! Thats not to say that nothing is happening, it's just all become such an effort to stay positive, I didn't want to keep writing such negative stuff. Thought it was better not to write at all. However, today I experienced one of the worse times since diagnosis. I went for an appointment at the Eye Hospital in Plymouth. I was referred last year as the steroids had caused my eye pressures to rise, so they wanted to monitor in case of further damage. I had seen my own optician a few weeks ago, so already knew things were still not right. Today, they confirmed that pressures are still up. But that wasn't the problem. The doctor I saw asked why I was on steroids. So like the idiot I am, I told him, I have auto immune hepatitis. His response? "Oh dear" in a rather grave voice, so I thought, blimey, he's actually heard of it! But no. The next question was "did you have a blood transfusion ?" Me.."No...it's an auto immune condition". Him..."well did you inherit it?" Me.."No...it's an auto immune condition, my immune system decided my liver was an alien and began to kill it". Him..."well were you a heavy drinker then?" Me...." No....it's an auto immune condition" Him..."I know...but I thought maybe drinking caused it". Me....silence....I knew it would be tears or explosion. Him..." do you work?" Me..."not anymore...I can't because of my condition" Him.... "well what did you used to do? Me.... I've been a mental health nurse for 30 years. Him.."well never mind,  you know from your nursing that things will get better in the future". I couldn't speak anymore to explain that it is a chronic life long condition that I will never be free of.I cried all the way home.

Well, the gp shouldn't have put me on Meloxicam. As I thought, I'm not supposed to have ANY nsaids, and my blood pressure was high. Hepatologist was horrified. All the gp had to do was check with them first, instead, he persuaded me it was safe. I will never take any presciption from the gp again unless they check with the hep team first. So, it's back to paracetamol/codeine or tramadol if I want pain releif, or nothing if I want to stay awake. Liver bloods thankfully still normal and negative for reumatoid arthritis. So the pain is "just the AIH"......thats ok then isn't it?

Getting lazy and forgetting to write this blog .My bloods are still in range and we're now almost at the 18mth mark since diagnosis. All signs are good for remission. Unfortunately, symptoms remain the same, permenantly tired etc. For the last few weeks, the level of joint pain has increased and paracetamol /cocodamol hasn't touched it. I finally relented and saw a doctor on Saturday. He's thinking rheumatoid arthritis , another autoimmune condition which often goes withAIH. I have to have xrays, and more bloods done.he's also put me on meloxicam to try to calm things down.....very nervous (what's new) about this as its an nsaid which I thought I wasn't safe to have....he assures me its fine .and has increased the omeprazole to protect my stomach... Ihave to say my joints do feel a bit better though. Bloods on Fri this week and clinic next Monday. Keeping everything crossed!

Bit of a mad week clinically. Had my liver ultrasound on Monday, saw my GP Tuesday, had bloods taken Thursday and went to hepatology clinic today....my new career. The good news is my ALT/AST remain in normal range and thats been since September, the longest since diagnosis, so all the signs are that I am finally in remission. However, the scan was good in that it didn't show any advanced fibrosis, but confirmed I have chronic liver disease. I guess I already knew that, but sitting opposite a consultant and hearing the words out loud somehow seemed shocking. The bad news is, I have to remain on steroids for at least another 12 months, they won't risk dropping the dose any lower in case it all goes wrong again. He said that I am finally where he had hoped I would be last December. I also will have to have a further liver biopsy in the New Year as apparently whilst the bloods are normal, it's the only way to see exactly whats happening in the liver. Am really NOT looking forward to that again!!!!!
As my bone scan was normal. I'm seriously considering stopping the alendronic acid as it is such an awful drug. Have to have bloods again in 4wks and be seen in clinic again following that.
Feeling exhausted and fed up but trying to be positive.

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