Friday, 29 May 2015

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.

Wednesday, 6 May 2015

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.