The 30th of June.
My left eye has been utterly furious all day again. Last night in bed all I could think was "Please calm down so tomorrow is better" but that was in vain. I have been doing all the drops, plus the warm eye mask, then later I tried the cool eye mask from the fridge, which just did not seem cold enough so we've put it in the freezer, and I've shut all the curtains. That does actually seem to have helped a bit, so no sunshine for me. I've even put the visor on. It literally seems like there is a cloud over my left eye because it is not taking in anything.
So for most of the day I've been trying to ignore the agony happening in my head, pouring drops in at every opportunity and waiting for it to be bedtime so it can be tomorrow. I had some respite when I went up to my bedroom to work out and shut the blackout curtains so it was actually vaguely comfortable. Unfortunately, I can't spend all day up there because I have to keep getting the chloramphenicol drops from the fridge. It's not quite as bad as went I had the acute eye GvHD, but it's close.
It's hard to think of anything else to say about today to be honest. All I will remember is how much pain I've been in, how much I just want each day to pass. This is what it's like with GvHD - nothing is quick. The only fast-acting treatment I've ever had has been steroid injections into ulcers in my mouth, but I'm not sure if that's an option for the eyes. Hey, if all the drops for the next two weeks don't make enough of an impact, I'll totally ask. I had the antibiotic injection at the end of the surgery and that wasn't so bad, so I should imagine I could cope. All I really want at the moment is for it to behave enough on Wednesday for me to not be in agony all day.
The 1st of July.
I was so looking forward to writing a post saying how good my eye has been today, but in the past hour it's got really angry again! The only thing I can think of is that it has got quite sunny this afternoon so I've closed all the curtains in the living room and am in a lot of pain. You cannot ignore pain when it is there in your face all the time.
I woke up at half past five again. My routine seems to be one morning ridiculously early, one average. Repeat. Which means I'll probably be awake super early on Wednesday and be needing to mainline coffee all day.
This morning I called the train assistance people about my booking for Wednesday, because the email confirmation hadn't yet come through. The woman I spoke to said it had been sent, and when I looked again having hung up, sure enough, it was there! What I don't know is whether she sent it, or that was just a very convenient coincidence. Still, I will be assisted and that is all that I really care about.
I'm trying to think of what else I've done. I did my little workout while listening to a playlist I've created for the train journey down on Wednesday, and had another one of my gabapentin-induced micro-naps while I had the cold eye mask on. I'm fighting the urge to have another one right now. While I was still relatively pain-free, I was crocheting a cat blanket with a very large hook.
Fuck, this is excruciating. Why has this happened now?!