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Documenting not dying since October 2013.

The 8th & 9th; It hurts so much.

The 8th & 9th; It hurts so much.

The 8th of July. 

I am really suffering. My left eye is so painful, and I don't know why it has got worse when it was doing so well until mid-Saturday. I wake up and it looks angry, but it isn't too sore or light-sensitive, and I can do things like use my phone and crochet a bit without too much trouble. Then it gets to late morning, and I have to start closing the curtains because I just can't deal with the light. 

Today it's been so bad that after I came back downstairs, having done my core exercises (after a week of not doing them) in my bedroom (with blackout curtains from the acute eye GvHD eleven years ago), the light coming through into the living room was so bright that I had to put the eye mask and visor on to try and make myself even mildly comfortable. The only other room I could cope with downstairs was the bathroom, because it only has one small window which is frosted and looks at the wall of the house next door, but I could hardly stay in there all afternoon. 

Mommy had been to the hand therapist this afternoon (and has been discharged, yay!), she found me in this ridiculous state, just listening to the tennis on the TV, so she decided to go back out into Sutton to try and find some blackout curtains for the living room. She was gone for about an hour and a half, because she went to four different shops to find them, and I sat here and thought about how lucky I am to yes, be disabled, but to also have a family that are able to support me in all these different ways, who love me and have the means to just be able to go out and get this thing that will make my life easier. I am very conscious that I am probably in the minority when it comes to this. 

In good news, I gave the Ikervis eye drops a go this morning, when it wasn't agony to just have my eyes open, and it was okay. I was shocked. I had been so scared, remembering the pain I've felt before, and my heart was beating so fast, but it didn't hurt. I just hope it wasn't a one off. 

The 9th of July. 

I don't know what to do. It hurts so much. It's less bad than yesterday I think, but it's still pretty fucking awful. The first half of the day was good - the eye appeared much less angry, less visible blood vessels, and I could see. I even managed to knit the first row of the Moomin jumper. But late morning came around, we shut the curtains (blackout layer applied and effective), and I'm still sitting here this evening with my visor on and my hand around my eye because just existing with my eyes open is so hard. I just want to cry, but crying hurts. I know this will only be a couple of weeks in the grand scheme of things but at the moment I am living from eye drop to eye drop, counting down until there's only the last one left. It can't ever be easy for me. 

The 10th & 11th; Remarkably incredible?

The 10th & 11th; Remarkably incredible?

The 6th & 7th;i feel like such a useless human.

The 6th & 7th;i feel like such a useless human.