I get really ill from being out in the sun or to be honest any form of uv lights. No one really knows why yet, I have been referred to the lupus clinic under rhemtology for more tests to find out weather its an autoimmune disease like SLE lupus or Sjorens syndromes or more of a sun allergy where I will be referred to an immunologist.
But the fact of the matter is that uv light makes me unwell. To the outside it doesnt look like a big deal it just looks like a rash thats all. But after I have been out in the sun or under a bright light, even just for a few minute. My whole body will start to feel hot like on fire, my body will feel like treacle, even sitting up feels like alot of energy, my hands will go red and swollen, my whole body will ache and shake, my head will hurt.
My eyes will go red and sore
My skin will itch
I will crawl up my room and lay on my bed, hoping the pain will go away so I can at least sleep.
I have to retreat to my bed for a few days or even a week at a time
I love the sun though
I absoutly love the feeling of the sun on my face, on my skin, I feel alive in the sunshine
But it doesnt like me.
Sometimes it scares me, as if its lupus uv light wont just make me unwell there and then. It will make me long term ill, causing disease activity and cause organ damage.
There is no more sinking feeling than seeing a rash and feeling unwell.
Sometimes I will feel the familar sickness and search my body knowing I will find a sunlight rash. It can appear web like, or as a blistering rash, sometimes it can even look similar to sunburn but it isnt.
Sometimes uv light will emit through my clothes, there is just no escaping it.
Everyone has there theorys and likes to voice them.
And sometimes it just makes me want to scream and scream
Theyll tell me how they once got a rash when they were younger from the sun and it was no big deal
And I just want to scream but its not the same, its not the same
I know thats selfish, it very might be, I cant define someones own experince
I know that alot of time people are just trying to relate experinces, to try and understand and show they care.
But my loss of being able to feel sunlight on my face, for even just a minute without feeling consuquences
Feels personal
The loss feels like my own
Even though its not I know
But I just want to harbour in the grief alone often.
How do I describe how limiting it feels to feel unwell from simply the sun or from simply a light.
When even the deepest snow I cant escape the suns reflection
Even the shops provide no cover of safety, with there bright lights emiting uv light.
How heartbreaking it is, to have another thing I have to lose because of my health.
To some people its just, put suncreen and staying in the shade.
But its not
Its making sure Im not in the suns reflection between 11-4
not even for a minute
Its wearing sunscreen everyday even in winter
its changing lights in my room and flat, so that I dont have a reaction
its protecting myself from reflections through windows and water
Its just another thing.
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