Lupus and Why I Often Fail at What I Want to Accomplish

With lupus, heat is my worst enemy. Anything over 75F is hot to me. I live in Florida. You do the math.

Summer is hell for me. People who don't have lupus can never understand what heat does to me. It's like every ounce of energy is just sucked from my body. It's not the sun. I actually love the sun, and in the fall, winter and early spring, when it's cool and sunny, I'm in my element. It's the heat, not even the humidity, the heat itself. Yes, the humidity makes it feel hotter, but it's always humid here, and cool humidity is fine.

So this climate change stuff is making it crazy here this spring. Usually, it doesn't even start getting hot until May, but this year, it was up and down all through April. One day it would be in the 60s, the next in the mid-80s. When the weather changes like that, my body does not adapt well. When I get hot and my lupus starts to flare, it takes me sometimes two or three days to recover, so I'm good for nothing in the cool days that follow.

I wanted to do so much in April, and I did get some things done, but not as much as I should have. Toward the end of the month, I was unmotivated to do anything. Right now, it's taken me two days to get my kitchen halfway done. When I start flaring, I can't make plans. I can feel great one day, and not be able to get out of the bed the next. It's all I can do to get up some mornings and get my coffee, barely moving along, holding onto walls and furniture so I don't fall and break something. It takes me about two hours to fully wake up and get to feeling human. During that two hours, I have my coffee, eat breakfast, and take my meds. After my Ritalin kicks in, without which I cannot even think clearly, much less have energy to do anything, I climb off the bed, take a shower and start my day.

Some days I skip the shower; well, many days I skip the shower. Showers feel good, but unless I have somewhere to go, I usually just sponge bathe, maybe wash my hair if it's getting too bad. Showering is like work and although the warm water feels good on my aching joints, it doesn't leave me feeling refreshed. It's just another chore I have to get through.

Eating is yet another chore. I don't really enjoy eating, because of the energy it takes to prepare food. On bad days, when I'm devoid of energy and in a lot of pain, I sometimes live on liquid meal substitutes and fruit. I try to keep small frozen entrees available for days when it's all I can do to zap one in the microwave. In the summer, that's a lot of the time. In fact, I was making my grocery list yesterday and put "frozen meals" on it.

I didn't mean for this to be a dissertation. I just wanted to explain why it's so hard for me to stick to any kind of diet plan or routine when it comes to my weight and fitness. I've switched to the Mediterranean way of eating. I don't see it as a diet, only a change in what I was already eating, but like all plans, it sometimes takes more energy than I have just to eat, much less track foods and count calories.

So I'm doing the best I can while my body is fighting me every step of the way. I was going to join a gym, but it will have to be once it gets cooler, because I don't have the energy to even go to a gym right now, much less get on a treadmill or stationary bicycle.

I hope your day is going well, and I ask that you count your blessings if you don't have a serious, invisible disease that not even your family will accept that you suffer from. If you do, I understand, I believe you, and I feel your pain -- literally! LOL Much love and many hugs sent your way.