I am soo grateful that today I didn't have a panic attack! Of course I took it easy today and did my bilateral stimulation when I needed to. I'm almost sure that alot of the pain I'd been experiencing since Sat. was due to my working in the yard while the sun was still high. (around 4pm) Today I was determined not to make the same mistake again. I made sure to use sunscreen spf 85, my wide brim hat, and the new sunglasses I bought. (100% uva/uvb protection) I waited til 6:45pm to pull some weeds and do some pruning in my rosebush. So WHY, after doing all of 30 min work do I feel headachy and "medicine head" like. I sure hope somebody understands the term "medicine head". It's like I can't even think straight.
I wonder if this disease, whatever it is, is active right now. While I've been dealing with joint pain, morning stiffness and fatigue for over a year, it's only been within the last month or so that I've noticed how badly I feel after being outside. I've gone from feeling really tired after coming in from outside to feeling nauseous, "medicine head" and exhausted. Not to mention being outside even for 15 min brings out what looks like a sunburn across my cheekbones.
Good Grief! What is going on??
I know exactly how you feel! The sun does the same thing to me. My mother theorizes that it is an allergy to the sun? (could have some merit there). The "medicine head" I think I understand. Its like your spacey and you cant really focus, right? Or maybe Im wrong lol.
What I find works best for me is Avenno daily moisture Ultra-calming moisturizer. It actually helped with my lupus rashes and keeps my face from getting horribly burned in the summer sun (I have REALLY fair skin-like porcelain). As for the exhaustion you feel its:
A. probably your body telling you "HEY TAKE IT EASY! IM TIRED ENOUGH AS IT IS!"
B. any sort of exertion in the summer sun and heat can cause rapid dehydration. I never actually take my own advice, but really guzzle water. Like two bottles within three hours after youve been outside. It may help.
C. your "headache" is most likely from dehydration.
D. the sun can make lupus flare. Im not really sure why. Perhaps its the damage to the skin that alerts the immune system to attack?
As for the sun "rash" the same exact thing happens to me, as I said earlier Im not really quite sure why it happens....
Ahh well, at least I'll be the prettiest when Im older (my skin wont be nearly as wrinkled). ;)
I wish you well!
teenlupus101
You do get it! Thanks :)
Teenlupus101 said:
I know exactly how you feel! The sun does the same thing to me. My mother theorizes that it is an allergy to the sun? (could have some merit there). The "medicine head" I think I understand. Its like your spacey and you cant really focus, right? Or maybe Im wrong lol.
What I find works best for me is Avenno daily moisture Ultra-calming moisturizer. It actually helped with my lupus rashes and keeps my face from getting horribly burned in the summer sun (I have REALLY fair skin-like porcelain). As for the exhaustion you feel its:
A. probably your body telling you "HEY TAKE IT EASY! IM TIRED ENOUGH AS IT IS!"
B. any sort of exertion in the summer sun and heat can cause rapid dehydration. I never actually take my own advice, but really guzzle water. Like two bottles within three hours after youve been outside. It may help.
C. your "headache" is most likely from dehydration.
D. the sun can make lupus flare. Im not really sure why. Perhaps its the damage to the skin that alerts the immune system to attack?
As for the sun "rash" the same exact thing happens to me, as I said earlier Im not really quite sure why it happens....
Ahh well, at least I'll be the prettiest when Im older (my skin wont be nearly as wrinkled). ;)
I wish you well!
teenlupus101
I love that..."Peace Accord with the weeds" :)
Just got back from my 30 min walk with the dog. Had on spf 85 and my hat and it's 6:30pm...still came back with such redness it looks like I was sunburned. Tomorrow is my appt with the dermatologist, so we'll see what she says.
Ann A. said:
Thanks for reminding me why I signed a Peace Accord with the weeds.
I took a sleeping pill late last night and then the dishwasher repairman woke me up very early this morning. I was having a very weird dream when the phone rang and it took me a while to find it. The part needed to fix the machine still has not shown up, so I still have no dishwasher and I have had "medicine head" all day.
The "mow and go" guy came and went. I looked out of the kitchen window and checked how the weeds from my neighbor's yard were invading my yard and crowding out plants that I had worked very hard to nurture from small seedlings. I tried to figure out how I could handle going out and pulling some of them (I actually intend to steam some of the weeds away). Then I realized that it was a pipe dream. Once upon a time I could work in the garden. I can no longer work in the garden. So, I need to find a way to deal with the weeds that does not involve me being outside in the sunlight, or in the heat, or in the humidity. Sunlight, heat, and humidity do not work for me, period.
Of course the deciding factor for today is that I have two meetings tomorrow afternoon. If I pull weeds today, I will not be able to make the meetings tomorrow. The meetings are about (1) a possible job for me and (2) the community health task force. I hate canceling appointments and missing meetings that I have promised to attend more than I hate weeds. So the weeds get to live another day and so do I.
Your post was just the reminder that I needed to keep my old lupie self in the house.
I can get away with being out in the sun (with all the protection) is it is not too hot. But what does me in is the humidity..that's when I feel awful and get all the symptoms (the ones I don't live with daily). Yes, it is sooo hard to watch your garden/yard go to hell because you can't go out like you used to. I have found that if I go out in the evening, I can get some work done..will work till dark. It's cooler then and the sun isn't on me. Hope this helps..
The same happens to me with top much sun (sometimes even to the point of migraines and weaving in&out of consciousness in a freaky way!) Too much used to be 15 minutes of noon sun or more than 30 later in the afternoon… Now I’m doing quite a bit better after getting my lupus under better control, but I still follow my sun-avoidance habits so I don’t flare it up again (sun triggers lupus activity whether you get skin symptoms or not!) I’m sorry to hear it’s so harsh on you even in the evening. Remember it is summer and the rays are stronger, longer in the day, but you could take advantage of doing your gardening after 8 with the long daylight! Best of luck. I also recommend mineral-based sunscreens, btw…