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Documenting not dying since October 2013.

The 15th & 16th; The words wouldn't come.

The 15th of September. I woke up at twenty to nine this morning! Oh it was glorious. I can't remember the last time I slept that late. I can't imagine it's going to become a regular thing though. That would asking too much, I think. I go down to 10mg of pred tomorrow though. Getting there! We will have to slow the tapering after 10 though - I do not want to jeopardise this. My plan to be steroid-free by the end of October is still on track.

This morning, Mommy and I went to Tesco to find me something to have as my main meal at lunchtime as tonight I was out at an OHS meeting, and for some reason, I was craving vegetable curry. After a lot of searching, we did find some and some pilau rice and then I was happy.

This afternoon, I tried to write about photopheresis, but the words wouldn't come, so I watched crap on TV instead. I wasn't very trembly today and it feels like a waste.

Then tonight was the OHS meeting. We actually had a quorum! Things got a little bit tense at one point, but were salvaged by an excellent idea from the headmaster and after a good hour and a half of chat, I got a lift home from Shiva and collapsed into an armchair. Bedtime.

The 16th of September.

I took 10mg of pred this morning and by tonight I've noticed all the blood vessels in my hands coming up so I had another 5. It's fine, we just can't jump in 5mg increments though. Need to taper a little more slowly.

My sleep the other day was a one off - I was up at ten to five again. So tonight I'm tired, cold and trembling. It's been a very quiet day - I didn't go anywhere. Although the majority of this afternoon planning a trip to London to eat things. I realised I don't need to go to all the places, so I culled a lot and now we're going on the 16th of October, yay!

Becky came round to tell us about school. It all sounds so stressful. Children are little shits now. I would never have dreamed of doing the things she tells us about. 

Clinic tomorrow. Hopefully Ram will actually be there this time.


The 17th & 18th;  Our bodies are such polar opposites.

The 17th & 18th; Our bodies are such polar opposites.

The 13th & 14th; Part of me is really sick of life.

The 13th & 14th; Part of me is really sick of life.