Sun sensitivity - in Australia

[bengali]

Just after people's tips for avoiding UV exposure - I've recently started having a fair bit of issues with it (just coming on spring now).

Yesterday, I had long sleeves on, jeans, a broad (5 inch brim) sunhat, sunniest, 50+SPF broad spectrum sunscreen on. I did spend a little bit of time outside middayish, but had to. There was a bit of wind, so did flip the brim of my hat up a bit - but again, sunscreen.

And I felt like an idiot, too, not that that changes anything, everyone e else wearing short sleeves, shorts, etc, it was about 30 degrees for Pete's sake. But... *sigh* That's not the point.

The point is, I am seriously feeling this crap. No 'butterfly' rash at all (until recently it just made me feel achy and sick a bit, headache, but was manageable, even though I'd started being good about wearing sunscreen hat, and sunnies in winter, too.

But coming spring and I am dreading summer. Yesterday has left me flushed in the face, on the neck and upper chest where my shirt didn't cover, my wrists a bit, too. It BURNS, too, like a serous sunburn. But there's no way it was a sunburn, last year I spent all day out, sunscreen once or twice throughout the day, no hate, heck of a lot more exposed, no burn at all.

I have things I have to do outside. I have no choice. And this temp, the 30 degrees, is nothing, last Christmas we were 46.

So as much as shade, and staying in where possible, or limiting to early morning/late evening when I can, what else can I do?

This is killing me, though, I LIKE it outside. I hate this crap 😢😬😤😵😞😩😭🙅😫.....

[Boxxietrolls]

I have no advice for you but I just wanted to offer a lending ear. I understand you're frustrations. I rarely ever go outside because I know I will feel like crap and regret it. I live in the United States in Wisconsin. It has been over 90 degrees this week with the heat index. It has been killing my body. I wish there was something I could do for you!

[bengali in reply to Boxxietrolls]

It's the sort of thing you don't wish on anyone. It's coming up 10, and I am shattered, so tired;, struggling to type this without typoes all over, brain is numb; I want bed, but putting my face down on the pillow is holding me off, burning like crazy. So hoping it doesn't end up being one of those nights...

But I wish I could male it easier for you, too - I so sympathise, This is my first year with this stuff happening, had Reynaud's for forever but that's overall maneaheable mostly, then EM last winter, now the rest, too. I just so hope with all the huge and crazy medical adbances they've made, ate making, each and every day, that one day they can help, ease a bit at leadt, people like us.

Fingers crossed the weather eases a bit for you, and soon!

[Boxxietrolls in reply to bengali]

I sympathize with you too. Everyday is a struggle. I wish I could help but I don't even go outside when it's hot and sunny because I know I regret It!

Maybe one day they will find something. I know I am drawing at straws but did you try a cold wash cloth on your pillow? Maybe treat it like you burned yourself. I think that's what happened. That only ever happens to my face on the beautiful butterfly rash.

I wish I could be more helpful I hope just listening and talking helped.

[imsickandtired]

I too avoid going outside in the summer and keep my window curtains closed in the summer as well. Lupus just requires a lot of life changes and I usually get pretty resentful every time I have to change something else. However, consequently, I have become a big fan of late fall, winter and early spring. Summer is just something I survive.

One thing to watch out for is UV exposure from florescent lighting. It effects me as bad, if not worse, than the sun. Being in a store with florescent light will take me down every time if I'm not completely covered...and that's true all year round. I use LED bulbs in my home. I am also in the process of having my car windows tinted dark with UV blocking film.

Finally, UV exposure is cumulative during the day, so being in and out of the sun, even in short bursts, can add up to some serious exposure.

I'm sorry you have to deal with this. It's really aggravating I know.

[Paul_Howard Partner LUPUS UK]

Hi bengali ,

You may want to take a look at our blog article about light sensitivity in case you find any of the tips there helpful - lupusuk.org.uk/coping-with-...

[Djlr]

It is one of the hardest things to deal with living with Lupus – staying out of the sun or ultraviolet lights inside.

We are son clothing like you can order from Coolibar.com Or SundayAfternoons.com light weight SPF clothing – hats – umbrellas – pants – jackets for the times you (have to be out in the sun).

It's best to avoid it altogether, but wearing sunscreen and the proper clothing, never going out mid day when the sun is the strongest, but even on cloudy days we have to be careful the sun is still there.

hopkinslupus.org/lupus-info...