Managing Expectations with Lupus - What can I still do, despite lupus?


They can motivate and encourage - pushing us to feel better, and do more, despite lupus. But they can also make us feel dejected and disappointed, especially when we fail to finish what we were just sure was possible.  

I’ve spent many years trying to strike a balance between these two. How do I make plans when I know they’re likely to be derailed? How can I still feel accomplished when my goals might go unattained?  

Having goals and setting expectations amid an unpredictable, debilitating illness can be challenging, but the exercise has been a vital part of my journey with lupus. It’s easy (and disheartening) to set yourself up for failure again and again by trying to accomplish too much. But figuring out how to work within the boundaries of your disease while maximizing your potential? That takes some brain power. And will power. And warrior power.

At the end of any day, my goal is to figure out how to hope, plan, and strive for a better life, while not jeopardizing my chances for a healthier, happier me.

Here are three quick guidelines I try to remember when managing my expectations. These can also come in handy when dealing with friends and family members. Given the fact that many lupus symptoms are invisible, it’s only natural that those around us might have difficulty figuring out what we can do when. Following and sharing these suggestions may help:  

1) Set goals, but be forgiving: 

Goal setting is something I do on a daily basis. Some days, the goal is simple: commit to starting my nap on time, or make sure I take my Cellcept on an empty stomach. (Some mornings, that hour can seem like for-ev-er!)

Other times, I've made longer term goals, like phasing out of a stressful job, mustering up the courage to ask for an accommodation, or attempting to overhaul my habits to lessen my symptom activity.  

Whatever the complexity or timeline of the goal, I try to remember that a goal is just words on a piece of paper, or aspirations in my head. They can be revised or rewritten at any time. While it may feel like capitulation, changing the goal line should actually be viewed as a strategic move -all in an effort to make life more livable, more doable, more manageable.


Years ago, I decided I was going to set a goal of giving up my daily nap.  I didn't have a plan as to how to go about it, but I made the proclamation that within one year, I would no longer have to rest every afternoon.  

(Note that I have always suffered from lupus fatigue. Always. No matter what the cocktail of medication I was on. But as my most annoying, lingering symptom, I really wanted to make it subside.)

So I gave it a go. I ate well, cutting out any and all natural inflammatory foods. I stayed off alcohol, took my medicines as directed, and tried not to tax myself. I exercised daily, didn't work too hard or too late, and generally treated myself the best I could in order to get as healthy as possible, so that the lupus fatigue would improve.

When I was ready, I tried cutting down on my regular nap, 15 minutes at a time. The first 15 minutes came off pretty easily. I don’t remember the increments I used exactly, but I imagine I fashioned it like a prednisone taper – just a few minutes less a day for a week or two, and then another few minutes less the following few weeks. Before I knew it, I was waking up almost 30 minutes less consistently every day. That was a big deal!

But that’s about where it ended. I tried to continue, cutting off a few more minutes at a time. But the less I napped, the worse I felt. My body needed more sleep, and I…needed to take another look at that goal of mine.

I realized the goal of "no nap" was an arbitrary one – something that wasn’t based on fact, necessity, or disease activity. It was just a symptom I wanted to will away.

Sure. I could have pushed it. During the first 3-4 years after my diagnosis, I definitely would have gone overboard. I would have fought my body, ignoring its call for sleep, and risking my health to do it. Some might say, “Oh, but Sara. You could be sitting here today, nap-free.” But I say, “I don’t know that I would be sitting here at all.”

That’s the thing about lupus. You can push, but your body is going to push back. And there may come a point when the consequences of our actions are going to result in some pretty crummy stuff - permanent damage, irreversible symptom activity, or even organ failure.

But you’re not going down that road. You’re here because you know there’s another way. You know that listening to your body, advocating for yourself (sometimes against your alter ego!), and allowing for forgiveness are admirable exercises. You know how to practice restraint, and let yourself off the hook. You are capable of revising your plans. You are in charge of rewriting that goal.

So that’s what I did. I reminded myself that, years before, I had strategically inserted a nap into my day because it worked. It curbed my symptom activity. It gave me back my evenings and nights. It allowed me to live a pretty normal life, despite lupus.

So the nap stayed, and I got over it. I set a goal, but was forgiving. (The definition, by the way, of "to forgive" - "stop feeling angry or resentful toward someone (or YOURSELF) for an offense, flaw or mistake." About sums it up, right?!)

 And hey - I did manage to cut it down from 120 to 90 minutes. So that’s something. 

And me, being healthy and stable – that’s everything! 

In the next post I’ll share one (or both) of the remaining guidelines for managing expectations.


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