The Feeling of Frustration When New Symptoms Appear

I’ll admit that I’ve been pretty lucky in the sense that my symptoms have remained the same over the past few years. Chronic, widespread pain (joints, muscles, nerves) and fatigue (yes I like to be in bed by 9:30 at the latest, though I do try to get up early). The catch-22 is that it’s hard for any official diagnosis to be made when new symptoms aren’t popping up… that leaves the question, is it better when they do?

2-131026161152507Image from: http://www.kidney-healthy.com/lupus-nephritis-symptoms/7.html

I’m a sun bunny. Which is not good if I really do have lupus. AVOID THE SUN! Is what is preached as it exacerbates symptoms and can lead to rashes. I spent all of last summer, and the summer before out in the sun, just here in Toronto, but still. Too much sun and yes my joints maybe hurt a bit, but literally only if I was lying on the beach. If it was combined with some sort of exercise, then not so much. Fast forward to last week, which I spent in Arizona. Above average temperatures all week lead me to hiking, swimming, the hot tub, and patio lounging. All of my favourite things. Oh yeah, and it lead me to these little tiny white bumps on both my hands – a sun rash.

IMG_1232Good ol’ Arizona hike last week.

And while the optimistic part of me took a picture so I could show my rheumatologist (my next appointment isn’t until May). Maybe they can officially say it’s this or that! The realistic part of me says “oh fuck, now I can’t go out in the sun.” Segue grumpy face. I don’t want to wear long sleeves, as was suggested to me on Instagram when I posted a picture of my hands (also not sure how I’m supposed to cover my hands in the summer anyway). So, I’ve decided to take my psychotherapist’s advice for now and be grumpy about it. It’s impossible to be happy and positive all the time (even though that’s my preferred mood). I’m going to be grumpy and frustrated and sit in that emotion for awhile, until it’s time to not do that anymore.

IMG_1274Is this rash even necessary?!

If anyone has any advice for sun-lovers, stories, or anything else they’d like to share, feel free to comment or email me.