Yesterday involved another spring walk. Mr. Mango and I (along with the rugrats) walked to our little town’s rec center to do our civic duty and vote for our new provincial government. The walk itself was great, I mean I was tired and sore but that’s nothing new right so I didn’t think much of it.
It was beautiful out, sunny, mildly warm, that perfect sweater weather where you don’t get too hot you sweat but its not too cold (except for my fingers, thanks Raynaud’s) that you need to bundle up. Everyone seemed happy, even Buddy, who is still grumpy about being in some hot water due to school issues.
It wasn’t until we got home and I started to put together our late supper that I started to feel extra “off”. I had suspected earlier in the day that a flare might be coming on as I was a little more groggy than usual (sometimes it’s hard to tell when you’re tired ALL the time) and my right middle finger and wrist were very painful and swollen. I blamed the busy week before especially the fact that I used my hands a lot more, I mean it makes sense, I know that over doing things leads to more physical stress and that leads to more physical pain and other problems. It wasn’t until that moment when I had a light bulb (but not a fluorescent kind) moment. SHIT… SUNSCREEN!!!
I, like most people who spend most of the summer months here outdoors know to put on sunscreen to prevent getting a burn, but in the milder months and especially in the evenings, I’ll be the first to admit that it isn’t the first thing that comes to mind. When it’s still sweater weather, the idea of having to slather any showing skin (face, neck, hands) in white goo just isn’t a high priority. At least that’s how it was until now.
We didn’t really think about photosensitivity much when I first officially got my lupus diagnosis. It was the dead of winter and other than a quick trip from car to building or building to car, I didn’t spend enough time exposed to sunlight to be concerned. Of course my doctor asked about previous summers. I have over the years gotten rashes at the beginning of summer when I first start getting out more but I had always attributed that to tan oils, seasonal allergies or mosquito bites.
She DID caution me that it could have in fact been slight skin reactions to UVA/ UVB and that not only could it also be a trigger for skin rashes and other physical flares ups but that the Planquenil could make it even worse. My stupid foggy brain forgot. Completely.
That is I forgot up until about 10 minutes into making supper when all of a sudden it just felt like I got hit by a bus. The fatigue increased ten fold, my head was pounding and the rest of the joints on my right upper side decided to join in the pain party. In this moment, the caution my doctor gave me all came back. I had been out for a walk 3 times in the last week all unprotected.
Sure it could be a coincidence, but it’s not as likely. From everything I’ve read, it varies greatly among lupus patients. Some people get reactions immediately, some take a few days (up to a week) to see or feel a reaction. Some people develop only skin rashes (like the typical lupus butterfly rash across the cheeks and nose) on the sun exposed skin, yet some people only develop internal reactions. Then there are a host of people somewhere in between.
If this really is the case, I really have to get my sun exposure act together. I’ve managed to make taking meds into a habit, getting physical exercise (when my body allows) a habit, eating/not eating certain foods a habit, sun screen and protective clothing is just one more thing I’m going to have to work on getting used to.
It’s not really a huge inconvenience, after all it’s a couple minutes of taking care of my skin. Many other lifestyle changes to better my health over the years have been much more difficult. Quitting smoking, cutting out wheat, limiting other foods, all much harder than putting lotion on a few times a day, so why is it I didn’t start thinking of doing it earlier?
Oh well, its a little too late to worry about the sun exposure so far, no need to dwell on the “should have’s”. Time to do a little more research and write down in my handy TALK TO DOCTORS notebook that photosensitivity might be my newest “thing”.
I’m still very much a newbie when it comes to managing my array of symptoms as LUPUS. I would love some input from anyone with experience with lupus and photosensitivity (or really any general lupus experiences). If anyone has any advice or words of wisdom it would be much appreciated.