I sit here on the hottest day of the year, a previously self-confessed sun chaser, imagining myself walking along a beach wearing a bikini, letting the sea dance around my feet. I could’ve been doing just that, but instead, I’ve been sitting here scrolling through Instagram as everyone posts their HOT Life stories accompanied tunefully by Roy Ayers I start to consider what it means to live “my life, in the sunshine”.

Five or so years ago this weather would’ve been my idea of glory, 39° wonderful! Pre 2018 I wouldn’t worry about the heat in Miami, I’d just book the holiday. My current reality is that despite booking a few days away in Oxford last month, I returned home the day I arrived because even at a mere 26°, the temperature and UV meant I couldn’t go see the city sites or enjoy myself the way that I had planned to.

Not everyone who has lupus is photosensitive. Lupus symptoms can react to the hot weather but for some luppies the effects are mild, I’m just not one of those people.  The heat can cause my feet and legs to swell up, and my joints to become painful. It can cause dizziness and headaches, and an onslaught of brain fog and fatigue. The UV activates the discoid lupus erythematosus causing lesions all over my body, as well as triggering internal symptoms.  I recently reached out to a specialist rheumatology nurse for advice regarding a possible trip to Brazil, who responded with, and I quote “If you are out there then you need to wear a high factor sunscreen and also keep covered, including your head, but there is a risk you may flare”.

It’s been four years since I’ve worn swimwear to any place other than a spa facility. Four years since I’ve worn a summer dress, shorts, sleeveless or low-cut top outside or left the house in the daytime without wearing a brimmed hat (hats are now an addiction of mine).  I wish they made long-sleeved versions of some of my favourite graphic T’s. When I want to wear t-shirts in summer, I have to wear either a long sleeve t-shirt underneath or an open shirt over it to cover my arms (which kind of defeats the point of a t-shirt). Finding lightweight summer dresses that aren’t too thin, have a high neckline are long sleeved and maxi can be difficult also. Luppies want to be stylish too. I try to invest in long-sleeved blouses, my wardrobe is filled with different styles, colours and fabrics. Palazzo trousers have been my best friend. They’re loose, airy, the wide leg is flattering and coupled with a nice blouse, a French tuck and a huge sun hat, my summer cover-up fashion can still be picture worthy.

I never leave the house without wearing or carrying my sunscreen. Factor 50+ is a must. I used to walk around looking like a character from the tv show “The Munsters”. Finding good protection for my face and body that didn’t leave the white residue was challenging. Sunscreen is available on prescription for photosensitive people, but every time I tried to get some, I was refused, or they didn’t have the prescribed sunscreen in stock. I try to always remember my neck, feet and hands as they’re left exposed and reapply, reapply, reapply.

I bought two beach tents that I use mainly for trips to the park, a small two-person tent and a four-person pop-up tent. Although having to carry, put up and then take down a tent each time you want to attend a picnic is tiresome, the alternative of always missing out was too depressing for me. The four-person tent is kind of cool because it has room for others to sit in it, so I don’t end up feeling isolated, people come to visit me in the tent and chat. I also have a parasol. I have to admit that I feel really self-conscious being a dark-skinned black woman carrying a parasol. Yes, everyone should be wearing sunscreen regardless of their skin colour, but I’m supposed to have added protection from my melanin.

Work-wise I’ve always been open with my employer about my condition. I explain that there’s a higher risk of me having a flare during the hotter months, because of the UV levels and heat. In the office, I always have windows open and a fan in the room and keep myself hydrated, but I try to work from home where I can help it.

The thing I’ve found is, that my life in the sunshine is more like my life in the shade but I’m doing my best to love it and live it regardless.