Hi guys! Getting ready to take my first sunny vacation since diagnosed with lupus. I have not had too many flair like symptoms appear due to sun exposure, but I’m pretty much never in the sun. My eyes have been very light sensitive the past year or so, with sun or bright light exposure causing headaches. Heat exposure also bothers me a lot, sometimes giving me heat exhaustion symptoms.
Now I am on three meds that cause sun sensitivity, as well as we all know lupus and sunlight don’t interact well. My skin type is a super pale pasty skin, typically didn’t tan or burn easy. My arms are severely damaged from prednisone, I now have paper thin skin with major stretch marks all over my arms due to pred.
Wondering what types of sunscreen, clothing, protection, etc will work best to allow me to enjoy a nice vacation without throwing me into a flare!
Also, any suggestions for a 16 hrs car ride? Really not looking forward to that. Husband keeps suggesting I take a flight, but honestly flights are really uncomfortable for me, and navigating around the airport, alone, if not something I am really up to doing as I find it very stressful and I currently cannot walk far due to pain and fatigue.
I have read that you should wear spf70 with broad ray spectrum. That will stop UVA and UVB rays. Also for in the car, I always bring my pillow from the bed as it will go all the way across my lap and I can rest my arms on something soft. You will want to stop every hour or so to get out and stretch. Keep yourself well hydrated as the air in the car is really drying. Also when you are outside a hat is a must but beware of rays bouncing up from the water of concrete. They are just as bad for you. Keep your meds in the car with you, not in the trunk as that will get too hot. Most meds say not to exceed 70 or so degrees.
Sun hat with good coverage, (not a tiny baseball cap) that provides enough coverage to your face. Big sunglasses to protect your eyes and shield you from headaches. Long sleeved light cotton shirt, light cotton pants or capris. Apply sunblock even with long sleeves or pants. On sunny days I usually take ibuprofen before heading out the door to try and lessen any inflammatory reaction the sun may cause my body. If you are going to be traveling by car try applying tint film to your car windows. It will lessen the impact of the sun while you’re stuck in the car. My son bought some at an auto parts store and applied it himself. It’s easy. Keep hydrated, get out and stretch on the hour. If it’s going to be hot, I’d take a cooler with ice for bottled water. I’d also put a wet washcloth in a ziplock bag and keep it handy for when you need to cool down. You could keep it in the cooler and take it out when needed. I do this for headaches. I put a cool cloth on my face. You can still have fun despite all these precautions. That’s the life of a lupie. Have fun!
I enjoy a vacation at the beach every year. A lot of sunscreen and apply it often. A hat and sunglasses are a must. Some beaches/resorts rent chairs with umbrellas by the day/week, I do know they do at Myrtle Beach. Long walks on the beach bother my feet and legs but I enjoy them so just make sure you don't go too far because you have to make it back :) Enjoy your vacation. Oh, and I do know they make special laundry detergent to wash your clothes in that add UV protection to your clothes, it lasts for several washings. You can find it by searching the internet.
Hi, pack a long sleeve shirt, and a hat that will cover your face-like a straw hat ! That is what help me. Have a good and safe trip, also remember not to over due it…Beverly l.
I so cannot be out in the sun at all longer than about 10 minutes or I feel like my skin is so hot that it is tingling. The best thing for me is to carry a golf umbrella (oversized umbrella) and it is amazing how it cools me off so quickly.
Lots of high SPF sunscreen, big hat, 100% UV proof sunglasses. You can also get some SPF clothing, but it can be pricey. I reapply my sunscreen every 1-2 hours. My dad has this really cool beach chair that has a detachable shade. He leaves the shade on (pale skinned, and lupus) and it covers him up really well. We also have one of those little tent type things to provide a shady and cooler spot on the beach. Make sure you keep yourself well hydrated. One of those spray bottles with a battery powered fan could help keep you cool too. As for the car... frequent stretch breaks, nap, bring a little pillow to sit on and blanket, Bengay, and maybe massage your sore spots. I hate long car rides!