I have had a bit of a week. Last Friday night/Saturday morning my pain got really bad. So I went to the GP who told me it was beyond what he could deal with and I should go to A+E. So I went to A+E, and then got admitted.

Because it was the weekend my usual doctor wasn't around and I got a different doctor. He decided to change all my meds. He reduced my steroids by as much as you can in one go (they are dangerous to remove all at once), took me off my immunosuppressant and then decided that opiate painkillers weren't allowed because they can sometimes cause constipation, which would be bad for me.

When he said that's what he was doing I was like "this is a bad idea. This is going to make me even more ill". And he was like "yes. I think all these things are suppressing your symptoms and I want to see exactly what is going on". Which from a diagnosis point of view is quite reasonable. From a 'I'm a human being who is already suffering' point of view, it is less reasonable. This was Sunday morning.

My doctor was unfortunately on annual leave on Monday too, so I was stuck with this guy on Monday,

Things got a bit dramatic. My pain was bad already (bad enough to make me, with my fear of hospitals, go to A+E). The taking away of the things that were suppressing it made it even worse. The pain relief I had was IV paracetamol, which on pain like that is as useful as saline.

I spent the whole on Monday in one position, laid on my side. I didn't eat or drink anything. I couldn't even sip water. I can't describe the amount of pain I was in. I couldn't sleep. I just sort of laid there and shut my eyes and wished for it to be over. I got up once the whole day to do a wee, and had to be supported by two people to get there. My breathing was really bad and shallow because breathing properly was so, so painful. I had doctors come every hour so and repeat the 'party line' from big boss consultant, who had told them all they were not to prescribe me anything, on pain of whatever - careers being ended I suppose.

My mum came. She came at 10am. Visiting is strictly 3-8pm, so I don't know what she said to be allowed on the ward the whole day. She split her time between sitting with me and going and shouting at people. The nurses were amazing too. They shouted at people for me. I heard one of them on the phone to a doctor. And one of the time the doctor came again to tell me no, a nurse came with him and actually cried on my behalf. The ward people were so lovely.

It was ridiculous. I was all dehydrated and ill. My blood pressure kept going really high and then really low. And my (oxygen) sats were really bad.

Eventually evening came and big boss consultant went off duty. The senior nurse of the hospital was on the ward, and the nurses told him about me. And then he spoke to my mum. And then he called the medic dr on call, who in the out of hours is the most senior doctor in the hospital and so gets to decide stuff. And he said to give me pain relief. So finally, around 8pm, I got it. It took quite a lot of morphine. But I felt much better.

Bit of an ordeal really!

I saw my doctor on Tuesday. He doesn't know what to do with me. That's the only real way of explaining what we're doing now. I am reducing the steroids and stuff with the knowledge that I am going to get very ill. I am already feeling worse in lots of ways, and my joints have kicked in too - lots of swelling. Its going to take a few weeks to do it all. In the mean time I have a variety of painkillers and just have to man up a bit and get on with it. If it gets too much I have to go back in hospital.

When all the symptoms have come out they are re-doing tests which will help them know what is the best long term treatment. So I'm doing a trade off of short term pain for a long term solution. I hope it is worth it - I have faith that it will be. I'm OK and coping OK. Its still painful (its not going to go away now) and I feel pretty wobbly and stuff. But I'll be OK.