Yes, I'm a vampire.

Photosensitivity.

It's become the bane of my life.

We've had a recent spell of good weather - sun, high temperatures, everything - and it's been a total nightmare. I'm photosensitive, which means that the sun can cause me to flare, except, this time, I'm being a little odd.

Here's some background.

I had my first flare when I was 17, long before anyone even considered lupus. I came back from a trip to Africa feeling awful, not just normal teenage not wanting to get out of bed awful, but full-blown hardly able to stay awake, let alone do normal teenage stuff awful. Cue loads of trips to see my GP and being repeatedly told that it was a virus and that strange redness across my cheeks was sunburn from being near the Equator. Yea, right! It was worked out about a year ago that I was experiencing my first flare of my whatever this is and not some strange African disease as everyone had thought at the time. Hindsight, eh?

A couple of years ago, in the middle of spring, I started getting rashes across my shoulders and back that got worse after being in the lab. I thought it was from wearing my lab coat. Turns out the lights in the labs were picked to mimic daylight, including the UV rays, something I only found out a few months ago.

Over a year ago, I started getting my butterfly rash. Well, I've had it before, but this was a really obvious one where there was no mistaking it for sunburn. Sunburn doesn't happen in the middle of October here... Anyway. Once again, I'd been spending time in the lab, but not as much as usual. It was then someone finally worked out I was photosensitive and that's why I'd been getting worse after I'd been in the sun. About time too!

I'd been put on a prescription of sunblock, told to stay out of the sun and to cover up. Fair enough. Except I'd still get worse if I even looked at the sun.

Thankfully, not long after that, I'd been started on plaquenil and that was helping a lot with it. No rashes when I'd been in the sun, only the headaches, nausea and joint swelling, but no rashes and it took a lot longer before these happened. Result!

But now I'm off the plaquenil again I'm back to being a vampire. I'm pale from the sunblock and lack of sun, if I haven't got rashes to give me some colour. It's reached the stage where I can't even sit at a window without having a reaction.

I don't like it and any advice will be greatly welcomed!