Summertime Hell

Summer is the time of year that so many look forward to; school is out, the snow is finally gone, and it’s time to enjoy the warm weather. For most people, that’s the case. For someone suffering from Lupus and Aquagenic Pruritus, summertime is absolute hell.

Growing up I loved summer mainly because it meant I was on school vacation. But I also loved our family vacations, and I am so grateful that Lupus and AP were not a part of my life at that time. If they were, I would’ve had some miserable vacations...for example, Edisto Island, SC with temperatures in the triple digits and humidity so thick you could cut it with a knife!

The heat didn’t bother me so much as a kid, even though I’ve always been the one sleeping with a window open and the fan on in the winter! I feel like the heat started to negatively impact my life in my twenties, and it’s only gotten worse. Maybe that was one of the symptoms of Lupus presenting itself, who knows?

I’ll start with why summertime sucks for me from a Lupus point of view.
One of the symptoms of Lupus is photosensitivity, so if I’m out in the sun I’ll often develop rashes, typically on my arms and/or legs. Sometimes I’ll also get a butterfly rash, which is a rash that spreads across my cheeks and nose. The butterfly rash sometimes hurts, but for me, it never itches. The other rashes from sunlight on my skin however, do itch.
I always have sunscreen on and try to stay in the shade, but as a nanny with kids on the go, finding shade isn’t always possible.
Exposure to the sun can trigger a Lupus flare in many people. In my experience, being out in the sun for a long period of time can definitely trigger a flare, but the combination of the sun and heat is almost guaranteed to make me feel sick.

Now for why summertime sucks due to AP...
Literally EVERYTHING makes me itch! All forms of moisture! A little humid out? Itchy! It’s hot so I start to sweat a little...itchy! Being outside during a beautiful sun shower, now I’m itchy! It’s a hot summer day and my nanny girls are dying to go to the pool, so off we go. Of course I’ll be sweating from the heat, so I’ll be itchy. Going for a dip in the pool should feel nice and cool me off, but it’s 50/50; I’ll either actually get some relief from the heat and feel okay, or I’ll itch like crazy, there’s no in between.
So pretty much the only time I feel good during the summer is when I’m inside with the AC.

Things definitely suck in the summertime, but I’m not having a pity party. I’m constantly researching and going on Lupus and AP support pages on Facebook and trying different things to make this time of year slightly more bearable.

Of course I want to be more comfortable in the summer, but mostly I don’t want this to affect my nanny kids. I want to be able to take the girls to the pool, draw with chalk on the driveway, and just enjoy being outside with them. I want to take my little guy for walks, play outside with his water table, blow bubbles, and just explore the outside with him.
I’ve always taken pride in my ability to be a great nanny. It’s never been just a job to me, it’s always been a big part of my identity and something that I truly love.
If I had to choose the worst part about having Lupus and AP, I’d pick the fact that it’s taken away my ability to be the best nanny possible. That part actually bothers me more than any of the physical symptoms.