When Remission Ends

What do you do when remission ends? When the ability to enjoy what life has to offer becomes a burden rather than a blessing? When the freedom to do what you want gets sidelined by the fear of "what if I can't"? When all your strategies for managing fail? It's a place I've found myself a lot lately; most recently it's the lupus being an asshole.

Sorry, Goats. Shoulda told you to cover your ears I suppose. 

But it seems like you have them covered already actually.

My husband and I have some painting left to do on our house. Unfortunately, the rains of June kept us from getting it done in the cooler weather. Now it's just plain beastly outside with a relentless 90 degree average and high UV index. This week is promising more around 80 degrees. Pretty sad when you get excited for the relief of 80 degrees. Needless to say, I have diligently implemented my prevention by waiting until the area I am painting is in the shade, wearing my zinc oxide sunscreen, drinking plenty of water, wearing my UV protective clothing, and a hat. Last summer, this was enough for me to kick some serious tail on the painting. This year though, I'm ready to collapse. I spent a lot of time outside yesterday getting the east side of our place done. Today I ache; I got fatigued trying to make breakfast; I feel like I have the stomach flu. Consequently, I am inside, taking it easy, and watching Netflix. My preventative strategies aren't cutting it.

Thanks, Dean. I needed that.

Last week I had a belly dance gig for the Chamber of Commerce. There was a time that I was able to dance a 20-25 minute set. I only had 3 minutes to worry about this time. Yet, I came home and fell onto the sofa afterward. This is after the practice session the day before where the hit-wall-fatigue made me cut practice short. I was stumbling, incoherent, and decided trying to go to the store afterward was not the best idea. I had to sit in my car for a while in order for the AC to revive me a bit. Heat sucks. My performance wasn't great either. I don't know if the audience noticed, but I sure as hell did. I'm torn between making myself go to the intermediate classes on Wednesday to get back in shape or just accept and do the best I can with once a week classes. I know my skills have waned over the past year and half. I need a tune-up. Two summers ago I was practicing 3-4 days a week and my skills were good. With my lupus being an asshole, what do I do about this art form that I truly love? It's avoid the heat and hope the strain isn't too much I guess. Maybe the cooling neck strap my husband used to wear roofing will help. Of course, I'll have to buy a new one since he's lost his. It's a new idea anyway and doesn't mean withdrawing more from activities.

That's right, Blanche. You got it.

One thing I've done since the remission ended is to add to the preventative measures. I always do the sunscreen, but I've worn the UV clothing a lot more. I do the self-care with taking a break and honoring the time I need to recover. I shorten my to-do list and remind myself it's ok if not everything gets done. I stay inside as much as possible to stay cool.

This hermit crab might be on to something.

I'm also trying to keep my sleep pattern fairly consistent with at least 7 hours a night. Although to be honest, 8 or 8.5 has been better. I drag ass every morning and still feel out of it. I think that I should start taking a short walk in the morning like I did last summer. It's a way to wake up before the coffee and get going so I get that all important moderate exercise in. It'll be much more of a challenge than it was last summer, but sleep and wake up routine is a security and possibly an easy win to give me that boost to do more.

You understand me, Cinderella.

Moreover, I've tried to exert control over the situation. During my remission I ate a low-carb, plenty of veggies, good fat diet. I felt amazing! I had more energy than I knew what to do with. Consequently, I have tried and tried to control more of my eating habits, but I am still so fucking tired. The harder I try to use this eating plan that changed things so much for me, the more frustrated I become. It's still the best eating style for me I know, but I hate not feeling in control. I hate that it's not improving things. I like to think I am easy-going and can go with the flow, but right now I'd really like to be the dominatrix of this disease. But I am so totally not in control. At all.

Maybe the hat is what I need.

Instead, I have spent inordinate amounts of my summer on the sofa with Netflix. My cats and I have cuddled so much that when school starts, we're all going to be in snuggle withdrawal. I always knew that remission would end. Even when I think I've won a small battle against lupus, it rallies. For example, I had to put a healing patch back on that lesion on my nose because it was starting to get inflamed again. I'm reading blogs by people with lupus again, too. Looking for ideas from others with the same struggle.

Aw! Thanks, Heart. 

Lupus can be an asshole. I don't know how long this flare up of symptoms will last. I don't know what else I can do at this point except keep taking care of myself as I have been. One blog I read mentioned how the pep talk phrase "Don't let your disease define you. You define your disease" rings hollow. Honestly, that phrase just makes the person saying it feel better. Me and others in a flare would slap you if only we could muster up the energy. I guess when all else fails, you just sit back, take care as best you can, and wait for lupus to stop being an asshole.   

 Are you wearing sunscreen, Moose? Make sure you reapply, too.