How Lupus Has Dramatically Changed My Life, Part 2: Lifestyle

In my last post I talked about how my life was completely changed by the diagnosis, but I focused mainly on medical treatment and my barrage of doctor's visits and medications. This time I'm going to talk about the other ways Lupus has totally altered my life.

First off, I can no longer be out in direct sunlight. Most of us "Lupies" are photosensitive, meaning that the sun's rays can actually trigger a Lupus flare. This also holds true for being underneath exposed florescent lighting because it also gives off UV light, which is the main culprit affecting those of us with Lupus. So now I have a daily routine of slathering on SPF 50+ sunscreen when I'm going to go out. I even do so before my shows because even though I'm usually indoors and it's nighttime when I perform, the stage lights might affect me.

In addition to my sunscreen routine, I also have to cover myself from head to toe: I typically wear long sleeves, pants or a long skirt/dress, and a scarf everywhere I go. In addition to these, I either wear a hat or I carry an umbrella or parasol. I look like a cartoon spy a lot of the time:

I think I'm learning to make it work for me though, don't you think?

My husband and me, with my scarf and parasol.

One thing that I've recently discovered and no one warned me about was that I would have to let go of the foundation and powder color I've been using for years. The color that used to look most natural on me, recently started to show and was creating a "mask" effect. So I went to buy a replacement. I reached for the tone that was a shade lighter and it was still too dark! It turns out I have faded in color by two shades! My husband thinks it's funny that I say I've "faded". I don't know how else to describe it.

I've been pretty accepting about the sun avoidance because I always had a sense it was making me sick (in the last decade or so, I have gotten sick every summer at the height of the season), but it does take its emotional toll on you. When I see people out wearing shorts and tank tops, I feel like they're the ones doing something crazy. "Wow, how can you be out like THAT?". I miss the way it feels to have the sun hit my skin. You have no idea how meaningful that simple of an experience is until it's taken away from you.

This talk about sun-avoidance leads me to what I think is the most important change in my lifestyle and the lifestyle of anyone with Lupus or a similar chronic disease--the need to "count my spoons".

What does spoon quantity have to do with Lupus?

I'm talking about the well-known "Spoon Theory" . The Spoon Theory is a way fellow Lupie, Christine Miserandino, came up with to explain how it feels to have Lupus fatigue and pain. In short, she was at a diner with a friend who asked her how it feels to have Lupus. Christine looked around and noticed the spoons set out on the tables, gathered 12 of them, and told her friend "Congratulations, you've got Lupus". She then proceeded with the metaphor. The 12 spoons represented the limited amount of energy her friend would have if she had Lupus. For every activity her friend would have to or want to do in a day, Christine would take away one spoon.  Shower? One spoon. Make breakfast? Another spoon. Wash the dishes? Another spoon. As you can see, you can run out of your spoons very quickly if you're not careful. So as a Lupie you have to make choices about what you're going to do each day so that you don't run out before you're done doing what you need to do. The spoons you use one day also affect the spoons you need for the next day, so if you use too many on one day, you're going to be left without the next.

So this is the thing that has most affected my daily life. I have so much pain and fatigue, I am constantly aware of my "spoons". I usually only try to schedule one outing a day, so if I have to work, I try not to go anywhere else that day. I won't be running errands and I won't be meeting friends for coffee. I just go to work. If I have to do groceries one day, I don't plan to do anything else because doing the groceries wipes me out. My local grocery delivery service has been a life-saver. Laundry and housework takes me days to do. My laundry schedule often looks like this: Monday--sort laundry; Tuesday--do laundry; Wednesday--fold laundry; Thursday--put laundry away. I'm not exaggerating. My husband is a HUGE help when he's home, but he's often away for work, so when he's gone it can take me four days to get the laundry done. Learning to be o.k. with leaving tasks half-done around the house has been one of the biggest challenges.

The part that makes me saddest is having to prioritize my spoons towards work over my social life. I often have to tell friends that I'm not going to make it to social events.  Let's say a friend wants to get together on a Saturday, but I have to work on Sunday. I still have to say no to the outing on Saturday because I know that I need a certain number of "spoons" to get through the work day on Sunday. These are the kinds of choices I regularly have to make. It makes me sad and frustrated because I feel like I'm missing out and I also worry that my friends think I'm neglecting the friendship. However, I've also found that if you're honest about what you can and can't do, your true friends will understand and will keep extending invitations, knowing that one of these days all your spoons can be allotted to them.

Finally, the last major change in my lifestyle is related to diet. At the height of my big flare, everything I ate was making me sick, so I decided to look into the Paleo Auto-immune Protocol (AIP). This eating plan is tough. I spent the first year after my diagnosis avoiding all of the following: grains, dairy, legumes, nuts, seeds, eggs, nightshade vegetables (tomatoes, white potatoes, eggplant, peppers), chocolate, coffee, caffeine, alcohol, and sugar. The following year, I started slowly adding things back to see if any of them would cause some kind of reaction. So far, I've successfully reintroduced eggs, coffee, butter, nuts, seeds, and limited doses of potatoes, peppers, and peanuts (peanuts are actually legumes). Peas and chocolate were complete failures. It felt like the chocolate was attacking me from the inside. That, so far, has been the saddest loss. I have yet to reintroduce dairy and grains. I actually don't miss dairy as much as I thought I would. As for grains, I was already doing Paleo (I've had stomach issues for years so I was already tweaking my diet), so I don't really miss those either. I have to say, as hard as this diet approach has been, I feel like it really has helped keep the inflammation down and given me more energy than I've felt in a long time, so I'm pretty happy with it. It's not for everyone, but if you think it's something you'd like to try, I suggest checking out Dr. Sara Ballantyne's page and her book, The Paleo Approach.* The book explains how and why certain foods create inflammation in the body (and Lupus is a disease characterized by inflammation) and then gives you an easy step-by-step guide on how to follow the diet and how to reintroduce foods.

Well, that's it for now. These are the main ways Lupus has dramatically affected my lifestyle. So if you know someone with a chronic illness, please keep in mind that they are dealing with a lot of stuff on a daily basis that you don't necessarily see. Offer them some help, if you're so inclined. Give them some compassion and understanding, and always leave an open invitation for spending time with them. One of these days, they may just ration their spoons and take you up on it.

* I am not a doctor, so nothing I share here should be taken as medical advice. Please consult your doctor before trying any new dietary approach.

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Do you have a chronic illness? In what ways has your life changed since getting sick? How do you "count your spoons"? Tell me your story in the comment section below.