Upcoming Week of Appointments: Photobiology

The excitement is killing me… I hope you can sense sarcasm. In reality, who likes appointments? Especially ones that drag on for a week!

If you don’t know, photobiology testing is basically photosensitivity testing. They test you for sun allergies and sun related conditions. You might be thinking, how are people allergic to the sun? Surprisingly enough, it’s actually a legitimate thing!

DON’T LIE TO ME – Harry Potter

…I promise!

I can’t speak for everyone, as they’re are many different sun-related conditions. But when I’m out in the sun, even if it’s only for a short while, my lips start to weep with liquid, then by the time I wake up the morning after, my lips (and sometimes face) are swollen with a yellow crust on the edges. It can take a few hours to go down, but the lips don’t fully recover until a few days later, as they’re still sore and have effects from the reaction.

My swollen lips – I don’t want to scare anyone with more severe photos!

Also, usually in sunnier months, my skin can get patchy. Appearing like a pigmentation issue. Once this happens, it can last for months and months, and can be very difficult to return to normal. Even certain areas of my face have permanently stayed a bit patchy, but it’s nowhere near as bad as it gets if I choose to go out in the sun, even if it’s for a small period of time! My mum has even been known to say I look like a cow when this reaction happens (in the best way possible). She means the way that patches are darker and others are lighter. Yeah your probably still wondering if that’s the best comparison. I questioned that too at the time! It’s like the sun want’s me to be a human paint by numbers! Is that any better?

Whenever I get that more long term reaction, it really affects my confidence as it almost feels like I can’t go out without makeup on. As it’s pretty obvious. Plus when my skin gets patchy, it’s even a chore to apply makeup. As it takes almost twice the time, because the patches usually show through the makeup. Unless I use very heavy makeup and plaster it on and even then it’s just a headache. Then it makes you breakout because your skin hardly ever gets a chance to breathe away from makeup, and it’s just a cycle.

So, my dermatologist referred me as in England, you can only be referred via a dermatologist, not a GP. They only have 2/3 phototesting hubs in England, all of them are equally far away from me, over 2 hours away, spanning over 100 miles. These places being London, Manchester and Leeds. The appointments take around 1-2 years to come through. Yes I said YEARS, then by the time that happens, you’re so over it and can’t be bothered to go or stay over for so long in a hotel!

I have to attend the hospital everyday over a period of 4 days so they can do all the testing, involving blood tests, photopatch testing, monochromator testing (This is a device that disperses light into its constituent wavelengths) and way more. The duration of these tests and more will go on for around 3 hours a day. I repeat, excitement!

Jeremy Clarkson’s sarcasm

As you can tell by now, next week can’t come fast enough. You have no idea how much I want to get this out of the way so I hopefully never have to have this done again. Oh and to make next week even better, they demand you don’t shower or bathe over the 4 days or I’ll wash off all the markings and tapes plastered on my back. So if everyone stays about a mile away from me, I completely understand. Oh and don’t blame it on social distancing, I’d want to run away from myself if I had the chance.

Big Bang Theory

I’ve had operations and was still allowed to bathe at least a day or 2 after, so this is going to be an experience I hope to forget but probably won’t. If there’s anytime my nose should be out of action, now’s your chance. Please, I beg you.

Have you ever had sun allergy testing? Do you know anyone with a sun allergy? What’s the longest time you’ve not showered/bathed for? Would you like a part 2/results post? Comment below!

8 thoughts on “Upcoming Week of Appointments: Photobiology

  1. Oh, you poor thing. My lips do something similar and I need to put on the sunscreen that lifeguards use especially for longer periods of time in the sun. Living in Florida, the sun is brutal, especially if I go to the beach or pool. I live a stones throw away from the beach and the community pool is right outside my door so it’s a shame I can’t enjoy them as much as I would like. Timing is everything for me. Going early or late in the day and staying out of the hottest, most sunny part of the day is what I need to do. My issue is nothing compared to yours and I don’t suffer near as much as you though, sweet friend. I understand what you mean about not wanting to go out in public when you don’t look your best. I avoid it also when my lips are swollen and blistered but if you are with friends, true friends, or family, they understand and love you no matter what. They love you for who you are. My daughter n law has acquired patchy colored skin as well and she is also went for tests…none that were as extreem as what you will endure. They believe she has a condition called Vitiligo, which is more permanent and aggravated by being in the sun. I will keep you in my prayers. Stay strong. ( LORD, HEAL MY FRIEND, IN YOUR HOLY NAME I PRAY. Amen.) Victoria

    Liked by 1 person

    1. How interesting! I’ve seen how there’s such thing as lip sunburn online, but I would’ve thought that’s when it’s fairly hot or if you’re in the sun for longer periods of time.

      I can’t IMAGINE living in Florida, I can’t stand heat at all😂. Even indoors I love the cool temperature way more😂. Much to guests shivering beside me begging me to switch on the heating. Firstly, bills and secondly, heat is overrated (in my eyes)!

      I have learnt since I was young as you say, timing is everything. You either go out early in the morning or when the suns setting. You’ll hardly ever catch me outside In the middle of the day!

      I second that, true family/friends love you no matter how high maintenance your skin is!😂

      Oh really, vitiligo? That’s what I thought I was suffering form but dermatologists still haven’t diagnosed that as it flares up then reduces down to not many patches. But I thought their were other versions of vitiligo as you mentioned, but dermatologists sometimes just don’t listen.
      Thankyou for ever such useful information, I shall keep it in mind!

      Thankyouu so much, Victoria!🙏🤗

      Like

  2. I’ve never heard of such thing in my long, long life! Poor you, having to endure all this. I sincerely hope you get some answers after all this testing (and non-bathing), as well as some solutions. Good luck to you!

    Liked by 1 person

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