Since I was young I have always been happy to have olive skin and be blessed with the ability to tan. I know that sounds ridiculous and sun baking isn't healthy but I always wore sun cream and I felt healthier with a tan! One of many pro's to living in Australia was the fact I had a tan for 3 years straight.
This may be why when first reading about Lupus I was horrified. Yeah the whole immune system attacking itself causing pain, fevers, fatigue, rashes etc is awful. But 'extreme sun sensitivity' whaaat?!? It felt like losing my hair all over again, another part of my identity that was being challenged by Lupus.
I was reassured that hopefully the drugs I was starting would control my lupus meaning I could go in the sun. Then I found out a lot of the drugs I was on to treat the lupus also make you sun sensitive?! Steroids, Hydroxychloroquine and Azathioprine all reportedly increase your sensitivity to the sun.
In winter it was mostly fine, aside from having to avoid certain light bulbs which would trigger a rash I could remain covered. When spring eventually arrived I sat outside with my legs out for an hour (no suncream because it was May in the UK?!) and immediately my legs were covered in a raised red bumpy rash. At this point I was planning my hermit life of being in a cave with never seeing sunlight ever again. I tried fake tan but feel that irritated my skin and made me smell like biscuits which set my nausea off.
However I spoke to lots of lovely people who helped me see I do not have to live like a vampire and can actually get the vitamin D I need due to #steroidlyf. So I'm passing on my tips for anyone else who has the fear of the sun right now:
1. SUNCREAM - Obvious, however I have learnt that not all suncream is equal. From my understanding, high SPF is good at protecting from UVB rays but you need to ensure suncream also covers you from UVA rays (it normally has a circle on it or a star system). You need to reapply it more often too even if you are in the shade (every 1 - 2 hours).
2. FACE PROTECTION - I feel like I have tried every face suncream ever (definitely an exaggeration) but they often make my face feel oily and gross. The only way I find I can cope with protection on my face is via a face cream and foundation with SPF in it. Then I wear a hat and sunglasses!
3. TIME LIMIT - My days of 9 hours sun baking underneath the hole in the ozone layer (aka Australia) are long gone. I limit my time in the sun, and ensure I have more time in the shade. As I am not rich enough to employ people to cover me with umbrellas when I walk around, this is my sun time so when lying on the beach I ensured I was in the shade.
4. CLOTHING - Whilst some cultures do this automatically, us Brit's tend to strip off at any sign of sunlight. Men suddenly think its acceptable to be bare chested when its 20 degrees in a London park and all fashion sense is usually out the window. However I am getting better at wearing loose cotton clothing, particularly to cover my chest although covering up when its hot is a challenge!
5. RECOVERY - When the inevitable happens and rashes appear, I find a damp towel at night (ice packs are too much of an extreme for your skin when it's red hot) over the area helps take that hot itchy burn feeling. I apply Aveeno moisturiser to help relieve the skin or used hydrocortisone cream if its particularly red raw and itchy. Also I learned if any area does get sunburnt or particularly rashy, its even more important to keep it out the sun as its at further risk of damaging the cellular level of your skin.
I still got rashes by day 4 of my holiday, it had a delayed response and then I think it built up as by the end of my trip both my legs were covered, knees were swollen and I felt like I had flu. I know it still is not good for me to push my body through this state. However, like in many aspects of my life, lupus and the drugs I am on have changed how I do everything. It's a constant battle and with each situation I learn more about living with my new body. Most importantly, I am so glad to learn I don't have to live under a rock, afraid of light and instead was able to enjoy my holiday - even feeling 'normal me' at times!
Would love to hear some of your tips in the comments below.
Lots of love, Zoe xx