I didn’t spend 4 days in Manchester for nothing! Or did I?
Let me take you back to how I was feeling the night before…
Anxious. Nervous. Expecting the worst, meaning their will be no results. You may be thinking, isn’t that a good thing? I haven’t spent 4 days in Manchester (2 hours away from home) for nothing. And secondly, I’d feel like the whole skin issue regarding the sun, still hasn’t been resolved. Almost feeling like it’s all in my head? All the photographic evidence I have of my skin erupting, being patchy, and lip/facial, would all be what? Imaginary?
So then I finally manage to fall asleep at around midnight and boy it was hard. Kept waking up in the night (that’s not unusual for me) but at 03:00, I couldn’t manage to go back to sleep. My mind already knew it was only 6 hours away from finding out the results, and I just couldn’t fall back to sleep. My phone was away so it was just me myself and I staring at the walls. 30 minutes passed, 1 hour passed, 2 hours passed, then I finally got back to sleep, thankfully!
My alarm rang louder than ever before. I woke up thinking, thank god for that. This day is finally the last, then I’ll never have to see the hospital again. I was practically having a little shimmy stretch in bed, before having to start doing my new morning routine remembering I can’t bathe/shower STILL! That was also another reason I was excited to see the back of Manchester, I can shower as much as I want at home. FREEDOM!
On schedule, arrived at the hospital. The waiting room was already at full occupancy which was great, so I had to wait down a hall on a seat. If you didn’t know, the waiting room had a small tv, that you could watch Homes Under the Hammer etc on. Instead, I was faced with a bare white wall, meaning I was left with no other choice but to think of the outcome of this appointment.
Do they have the results?
They must have. They’re probably gonna say they’re fine and that I and my photos are just imaging things.
The results are going to say nothing.
But will they?
Yes, I just knew it inside.
30 minutes later after literally staring at a blank wall, my name is called. I thought I was hearing things.
They still had to examine my back and arms for the last batch of readings. As my wrist and back are where the tests were done, (apart from the bloods on the first day) these areas were where the testing took place. I changed into a hospital gown with an open back, whilst the specialist dermatologist, trainee, and nurse came in. A strong light was flashed on my arms them my back (so they could take the readings on my skin better). I was standing there for a good 10-15 minutes just hearing them use their coded language regarding the readings on my back. This was where the patch testing, shining a weak sunlamp on my back, and a monochromator all happened over the past few days. Yes my back probably looked like 50 shades of tan.
Changed back into my old t-shirt and was ready to go back into the hall or waiting area, as I was told. Then the dermatologist said “I can just tell you your results now.”. I was like really? Ok. In my mind I was thinking thank god, took 4 days but we’re finally here. I was trying to play it cool obviously. I was also thinking, if they can tell me the results right now, that means the results are fine. In simpler terms, there are no results. Then there was a little drama as the room said one 1 person could be in it, meaning my mum couldn’t hear the results, which to be honest I was fine with as I kept saying in my head, there are no results. Then, the trainee wanted to come in, but she also apparently wasn’t allowed as the covid sign on the door meant 1 patient with one member of staff at a time. Meaning, NO ONE was allowed in the small room apart from the dermatologist and I.
Then they wanted my mum in the room, plus the trainee, so they asked some people to vacate a larger room so we could all go in there. This all added to the tension as I thought this is going to be an in and out thing anyway. You’re clear, you’re free to go.
Everyone sat down. Dermatologist said the results are in. I thought I looked relaxed, but realistically I was probably like…
I felt like doing a drumroll on the table. Or switching the theme tune for Countdown on. But Antonia, there’s a time and a place…
I’ll cut to the chase. I’ve likely had you here for longer than you wanted to.
She said, I have Photoaggravated Eczema. And I have Photosensitive Contact Allergies to some chemicals and sunscreens.
I was like, “oh?”
Eczema usually improves when exposed to the sun, but for some people, it makes their skin worse.
The test showed I was sensitive to both UVA and UVB but especially sensitive to UVA. UVA is the type you practically can’t get away from, it’s around all year round. UVA rays projects through windows or any reflections etc, meaning you’re advised to put a special film on all windows, or if you don’t want that, keeping curtains closed. If you’re in a workplace that lets say is surrounded by windows, like an office. The boss has a responsibility to put the films on the window for the health and protection of anyone with a sun related condition. Plus they get funding for it too.
Basically what it is, is that your eczema either flares up or is caused by the sun. Ways to prevent the bad skin issues exacerbated by the sun, is to stay indoors between the hours 11am – 3pm if possible. And around those hours, wear protective clothing, or if you can’t apply SPF50 suncream. And a normal layer isn’t enough apparently. The nurse showed me you practically have to not blend it in. So a thick, humongous dollop of suncream, just lightly smeared once on your skin every 2 hours. I was thinking, you must be kidding?
I was told by the specialist that as soon as my skin shows signs of a flare up or you’re feeling like it will if you’ve spent a while outside etc, even if it’s the tiniest area, apply steroids to it as soon as you can for a few days. As the longer you wait, the worse your skin will get and the harder it will be to treat. Just like how I’ve had patches on my face that don’t go away for months and months, and this is with heavy ‘treatment’ from my general dermatologists, much to no avail.
I think that’s about it! Oh I have a follow up appointment in Manchester later on this year as if they give you a diagnosis of something, they see you once or twice more before discharging to see how you’re dealing with your diagnosis etc. But next time I go, I should be able to go and come back home same day.
I was pretty quiet on the way home as it’s a lot to digest. Even though you always knew something wasn’t right with how your skin reacts to the sun and heat, it’s another thing being able to actually have a diagnosis and a reason for why I’ve always preferred to close the curtains, and why I much prefer the cold winter to spring/summer.
One interesting thing is that my mum said as soon as she gave birth to me, I wouldn’t stop crying. My skin was eczemic from birth – it’s clear as day from photos. Even when she tried to take me into the garden, I used to cry. On the occasions where she’d go pick her other children from school and bring me along, I’d run back inside. So she realised from when I was a toddler, I used to be happier with the curtains closed. And she’s never experienced that with her other 7 children. She always knew there was something wrong, but never in her wildest dreams did she think the sun literally ruins my skin. She always heard me say it burns me, and tried to get the doctors on countless occasions to look into what may be causing me to act this way. But they never did. I’ve been under my local dermatology unit in hospital since I was 6 months old, and they never worked it out either. They just thought if I don’t like sunlight very much as it burns my skin, they just won’t give me sunlight therapy as it’d probably make it worse.
But why didn’t they put two and two together? Negligent? I now permanently have around two slightly lighter patches on my face from all the severe patchiness I kept on having. I was under their care? Or supposedly.
There’s always hope. You just have to fight for it. And take loads of photos of when your skin flares up!
If you’ve made it all the way here… you’re over 1500 words down. Yes, there’s a high chance you’re regretting that decision now.
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