Archives For photosensitivity

The 7th of August.

Today seems to be the last really hot day. I hope so – last night I slept terribly. I should have had a second coffee at some point but I just never got round to it so now I’m very sleepy.

This morning, I got my blog post done before we went to The Spire. My appointment was meant to be at 11.45, but I ended up swapping with another lady who had another appointment elsewhere and wouldn’t make it. That was fine; I had nowhere else to be.

When I got called in, Julie was amazed at the size difference. She had a look at the sleeve I’m currently wearing and decided I need to go a size and class down, so I’ve got a prescription for that and hopefully Boots have ordered the right one. She also showed Mommy how to do the massage to deal with the remaining fat.

I have spent my afternoon being really cool, playing Rayman. Well, until four o’clock. I did the stupid next level, then a couple more, got The Elixir of Life (after a very frustrating bit) and thought it best to stop there.

Then, back to my dress. Now it’s a lot of back and forth, and I want to go to bed.

The 8th of August.

It is less warm for sure, but when it’s sunny oh boy it’s too much. I’m fairly sure I’m so sensitive because of photopheresis – I always had to wear sunglasses for 48 hours afterwards to try to prevent photophobia. I must admit I was not very diligent so it’s probably my fault that I can’t cope with brightness.

I kind of frittered the morning away doing a whole lot of nothing, apart from a bit of crochet. Keep plugging away at this dress, no matter how tedious this part is.

This afternoon was gym-time. Quiet again – maybe everyone has gone on holiday? I think the very committed girl must have because I now haven’t seen her for two visits on the trot. I had a weird sort of session – I did what I normally do and everything felt the way it normally does but my heart rate wasn’t going as high as usual. I think my heart rate monitor might have been having a wobble because I don’t think I’ve suddenly got better at everything.

The Janelle Monáe tickets came today and I could not be more excited.



The 16th of June. 

I have a tiny bit of good news. I gave the ciclosporine eye drops another go last night, fully prepared for it to be awful again. But it was fine. It stung a bit, and first thing this morning was a bit tricky, but it was so much better than last time. So now that extra line of treatment for my eyes is up, let’s hope that helps. 

So it’s been a quiet day. I wrote up a blog post this morning and this afternoon I did some podcast listening and redid all the crochet I’d had to unravel. Now back to where I was, I can try to finish. Will have to do most of it tomorrow because on Sunday, new kitties come, so I will be super distracted. I need some tiny floofs. 

The more that comes out about Grenfell, the worse if gets. The Queen and Prince William visited victims today, Theresa May only went to the hospital where she could control the narrative. Then she goes to a church but nobody sees her and she sneaks out of a side door. No council-lead support; everything is being done by the volunteers. Everybody in power is doing the bare minimum, sometimes not even that. It’s inhumane. 

The 17th of June. 

So hot. So bright. Being on Voriconazole means I’m not really allowed to go in the sun (it majorly increases the risk of getting skin cancer and since we know someone who did get it because they didn’t know, I’m not taking any chances), so I can’t go outside and enjoy it, but even if I could, I’d be so photosensitive, I’d be blind. I miss being able to see without pain. 

It’s been mainly a day of crocheting. Want to finish the doily. And I’m doing very well – I’ve got one round left. Although focusing on tiny crochet hasn’t been great for the eyes. Finish a round, have a rest. Lots of drops. 

Very little to say. I iced some cakes and put sugar elephants and ducks on them. I climbed the stairs and it was fine. That was a really good feeling. It’s been so long since I didn’t need an immediate rest when I got to the top.