July 14, 2014

Living With Lupus: Heat and Sun Sensitivity is Disabling

It took a long time for my lupus symptoms to become seriously disabling, and I'm still trying to work out the holistic and natural regimen that works to counteract the worst effects. Since Lupus is an invisible disease, I wanted to share what it's like for me on a daily basis to give you more understanding about those who suffer from this deadly disease.

Heat is My Worst Enemy

I've been feeling really bad lately, and it's all because of heat. We've had insane heat indexes here, well over 100 some days, so my energy has been at zero.

I want to give you an example of how sensitive my body is to heat. This morning, it was relatively cool when I walked the  8/10ths of a mile to the store and back; 76 F with a heat index of 85 F. The sun shines right in my eyes when I'm walking to the store, so I have to wear sun glasses. My eyes are very sensitive to bright lights of any kind, which was hell working in retail for all those years with all the bright fluorescents.

So I walked to the store -- 8/10ths of a mile -- and was already getting hot and beginning not to be able to breathe. In cool weather, I can literally almost run that far, but in the summer, it's like dragging a heavy log along behind me. It was blessedly cool inside the store. I wanted to stay until 9 a.m., because I needed to go to the Family Dollar on my way back to get batteries, and they don't open until 9. I didn't quite make it. Hit the Family Dollar at quarter to 9, and tried for 5 minutes to stand outside -- in the shade -- to wait for them to open, but I knew I was not going to make it, so I just walked on home.

The Trip Home is Always Brutal

Walking home dragging a stuffed rolling backpack is hard enough, but the sun was beating down on my back. I walk on the side of the street that is mostly shady, but that doesn't help much. By the time I get half a block, I'm sweating. I carry a wet bandana with me, and literally have to wipe my face and  neck constantly.

Remember, it's still only in the 70's, but the sun heats up my body faster than most people's. By the time I get home, I'm soaking wet and gasping for air. My heart is pounding as I drag the backpack into the house and collapse on the sofa under the ceiling fan.

It's 9 a.m. and still only 80 F, but with 93% humidity and a heat index of 91 F. It takes me a good half hour before I can even begin to put away the groceries.

Mitigating the Damage from Heat and Sunlight

Now, riding my bike to the store is a little less stessful, because the breeze is blowing on me and it doesn't take as long, but I can't carry back as much on the bike until I get a rack and baskets, so it sometimes isn't an option. I can get one cloth grocery bag into the basket I have now, so it's nice for trips when I don't need much, but not so much for trips where I'm going to be carrying four 4-lb bags of sugar, like today.

I like working on the sofa, because the room is bright and sunny, but in the afternoon when the sun gets too hot, I have to move into my bedroom where the sun isn't shining directly on me through the windows. The living room can get pretty hot in the afternoon, since it is attached to the sunroom, which has no door to shut out the heat coming in through the windows.

So now you understand more how heat and sunlight affects someone with lupus. I used to be able to work for hours in the yard, or hang out for hours on the beach. It took a long time for the heat sensitivity to hit me hard, but now that it has, I have a lot more sympathy for those who are also affected. I have lupie friends who have to grow only flowers that bloom at night, because they can't go out into the sun at all. I hope I never get that way, but I may. Until then, I'm going to do what I can and try to tolerate those who call me lazy.