I'm here on the east coast, more specifically in Washington DC where the summers can be brutal. We just had a mini heat wave with lots of humity and I feel exhausted. I have gone outside on several occasions during the day for various reasons but for no more than a half hour here and there and everytime I come back home all I can do is sleep. At first I thought well it's just the humidity but the humidity level has dropped and the only consistent thing I find is the SUN. I don't want to have to stay in the house during the day but it seems like for now that is the answer. It is affecting my relationships with family members because I want to go out and at least try to be social but I just don't have the energy. No one wants to invite me anywhere and I don't want to commit to different events because I never know how I'm going to feel. If it's an extremely sunny day then I don't want to go out so I miss the better part of the day. Anyway sorry for rambling I'm just wondering does anyone else face this problem and if so how do you handle it. My youngest daughter looked at me innocently enough today and said "Mom why don't you just carry an umbrella with you everywhere you go". Great suggestion just not sure about the execution of that request. Sitting in the house looking at four walls becomes depressing as if I'm not already depressed. Thanks for letting me vent...if anyone can give me advice please know it is most appreciated.
Hello Nu,
I know how you feel me having DLE...you've managed half hour out and it's done you in already...i can cover myself with cream where clothing that cover's me go out on the back garden stick the umberella up and within 10mins i still get a flare...i'm more or less in the house in the summer besides winter.
Lupus i find can put a large "Lock" on our lives of enjoyment...don't take any notice of what other's may think try what your daughter's suggestion or where a brimmed hat which i do and have'nt you got an aid which might help regarding walking or a wheelchair also...look at like this at least your out with your family and trying your best.
All my thoughts ar with you Nu because it's horrible at times and especially you wanting to be out and about with your family.
((A large hug your way mate)) all my love Terri xxx
all i can say is i am sorry you have to suffer feeling isolated from family events; the sun absolutely bothers me too.
I have considered an umbrella...parasol's should come back into fashion, right?
Hi Nu, Hi Tez, Hi Janice....
I was going to make the same recommendation...parasol's should come back into fashion. Alot of people use umbrellas now. I have considered it too. I said I was going to use one the other day when I was leaving work, they laughed. Well, while you are baking in the sun sillies, I wont be. Pretty soon it wont be uncommon. Thanks to the pollution and messed up ozone layer. I remember during one of my son's baseball games, I used a smaller one you stick in the ground. Of course parents were staring at me, but I wasnt dripping sweat, they were. People are mean. A hat is good too.
Nu, your daughter sounds precious. She wants you to feel well all the time. Mine does too. She pushes me when I cant move and gets frustrated when I dont. We are going out today cause the heat wave passed for the day here in New York. Taking the ferry to the city and just going to be tourists for the day.
DC is a sweltering city! I hope today is better than yesterday.
Hello. I feel the same way you do. I wear the sunscreen but I hate the feel on my skin. Too many clothes when it is hot is horrible. Try to tell the family to plan things a little later in the day. Hope you feel better.
I am going to a Minor league baseball game today for our company picnic. Its at 2pm and its supposed to be 89 degrees today. I am concerned about how I'll feel, I haven't been sun sensitive yet - but last weekend I was wiped out after a family reunion. I'm planning to wear a hat, and I asked my husband if it would be too distracting - and he said you're not that tall - they can get over it. God Bless our families. I recently saw a woman with an unbrella out in the sun - and I thought what a wonderful idea! That was before I was diagnosed this year.
Nu I totally understand, the sun has the same affect on me. I spend most of my time in the air condition and get out usually early in the day. I too don't socialize much because but I miss the fresh air, so I sit outside for a few minutes then head back in. I too have thought about using the umbrella, but I could not stand it with an umbrella when it's hot and humid and holding the umbrella makes my hand and arms feel even weaker. My daughter's usually come visit me and are willng to get up early and take me out to the store or farmers market. I just try to find something to do, I talk on the phone with family reseach many things on the internet or play card games. I am just thankful I am not stuck in a hospital, now that would be depressing.
Hi NuDirection,
I too am on the East coast, not far from your region actually. The heat wave we had was brutal and I paid dearly for over extending myself. On 6-18, my arm was brutally sun burned and my back, I went home and felt prickling sensation and dizziness, I took motrin laid down and expected a flare, which I did get for the next two days.
To avoid the sun, I have black out curtains in my home and I don't leave the house until 2pm or later. All my family knows, I don't go anywhere until after 2pm. If I had a little one, maybe, you can invite trusted family members over during the hot times in the sun and do an art project or make popsicles with the kids get a favorite movie and call it a day until later. I refuse to allow Lupus to affect any of my important relationships. So, I work within around the limits I have. Another example, a co-worker likes to go walking in the summer, I want to continue walking with her, but I insist we go out after 4 pm so we can walk longer in the cool air.
The sun is my enemy now, I am even considering moving further north east so the sun will be less brutal. For me its not the heat, but the actual rays from the sun that burn my skin quickly and send me into a flare. Not sure why I have to research that. I do burn very easy, only 10 minutes in the sun and I am burned.
Hope my suggestions helped.
If you feel weird with an umbrella, get a parasol with a pretty pattern. I love my sun umbrella. You can even get a plain one and decorate it to reflect your personality. I get a lot of compliments on mine. And a lot of people tell me, "I wish I'd thought of that!"
Don't let other people get you down about it. Their comfort is not worth your suffering.
I'm not really a hat person. I hate having my field of vision altered lol But some good sunscreen and my sun umbrella, I'm usually good to go. I'd like to get some UV clothing too but hey run so expensive. I've heard good things about the SPF laundry treatments too.
-Shu
Hello my family, I am sorry for what we have to deal with when it comes to getting outside, but I can relate also, because I have the same problem. what I do is cherish the time that I do get with them, and go inside when my time is up. My family usually try to plan around the things when the heat is setting, so that maybe I can enjoy more time with them, because they dont like when it is too too hot as well, and we live in Texas.
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863-LovingGodWhileLivingWithLupus.docx (138 KB)I have a hard time when it gets humid! I cant leave the house! I have to stay confined to the air conditioner. I go to the beach as it is my peace and serenity. BUT I use an Umbrella...I only get some sun when i get wet to cool off. I use to be able to last for hours in the sun..but as time goes on it is less and less. I feel the meds have a big pat in it too.
Prayers to you...I LOVE Jazz Ladies who use the parasol's they are so pretty! WHO gives a dern about what others think!! I gave up on that many years ago! It is about how I feel not how they feel. They have NO CLUE what we deal with and how STRONG we really are!! (((((( NU ))))))))
Great post. Thanks for sharing.
Hi , it's okay ! sometimes i feel the same way , not able to go out because of the same reasons - it's to hot some days , other days am tired and don't won't to be bothered with anyone . When the family start making plans to do things - i just leave the room , because committing to plans just not for me , but things workout ! I say do what is best for you !!! Along with saying that - don't forget to REST regaurdless of what anyone has to say .....Beverly L.
Today, was a good day. I ran errands before noon, thanks to LWL member suggestion, came back, rested until 7 pm then went walking around a school running track for 9 laps. Now, I will be turning in.