Eight and a half years after being diagnosed with lupus, and I'm still learning what I can and cannot do. For the past two weeks, I've had at least two doctor's appointments per week - and you know what? It's too much! I rush around, trying to get out the door when my babysitter arrives at 1pm - dash over to the doctor - spend about an hour or more during the appointment - dash back home to try and fit in a nap - and it's just too much to do two days in a row. I barely get in an hour's nap. One day a week, I can skimp a little, but the cumulative effect of doing so two days in a row isn't good.

And, of course, the temptation to run other errands while I'm out is almost too much to resist. So I need to remind myself that the primary reason I have the babysitter is so that I can get in my nap. Anything else I'm able to accomplish beyond that is just a bonus.

I'm no stranger to limiting my activity - nor to the idea of setting boundaries for myself. In fact, years ago, Johnny and I figured out that we had to limit any sort of travel to one weekend a month...making sure that we never traveled on back to back weekends. There were plenty of events we (in particular, I) had to skip, but my restricted travel did wonders for my health. Today, I'm able to travel frequently, but I still make sure I get plenty of rest on either side of our travel days. No errands, no plans, and certainly no doctor's appointments! (In fact, I just changed an appoinment from this morning to next week - knowing that our travel plans this past weekend would leave me a little fatigued. No need to push it - got to rest up for my book signing!)

Whether it's travel, napping, the amount of sleep you get at night, or adhereing to a healthy diet, setting boundaries plays a big role in living well. Here's a snippet from my book, Despite Lupus, entitled, you guessed it - Setting Boundaries!

In 2003, when Kraft Food Inc.’s Nabisco group was brainstorming about new forms of dieting and healthy products, they asked online participants what the words “diet food” represented to them and how they made choices when they snacked. Kraft learned that customers didn’t feel they needed to deprive themselves or diet per se – what they really wanted was the ability to control how much they ate. Kraft obliged with 100 Calorie Packs, a line of small, one-person bags of Oreos and Ritz crackers. The results were stunning: In 2005, that product line racked up $100 million in sales. People loved the built-in self-control that accompanied he little snack packs by eliminating the need for willpower.

Example: naps

I quite often find myself “dieting” in other aspects of my life, invoking boundaries for myself so that I don’t have to decide how much activity, sleep, or stress is enough for one day. A few years into my struggle with lupus, it became apparent that about six or seven hours into each day, I completely lost my momentum. I hit a wall, and after that, I was useless. It was a point at which no amount of sugar, caffeine, or adrenaline could help. I was just too exhausted to do anything. If I was still awake, I walked around in a zombie-like state, pushing myself to function on empty. It was as if the last half of the day wasn’t mine anymore; it was lost to
fatigue, claimed without recourse. Not only did I lose those hours when I passed my point of total exhaustion, the hour or two before hitting this proverbial “wall” were futile, too. The last scraps of time before I totally lost it were spent fighting off the exhaustion while trying to accomplish the final tasks.

After much deliberation, I convinced myself that if I napped for a couple of hours in the middle of each day, early enough to fend off the “wall” yet late enough not to interfere with the most basic of daily activities, I wouldn’t be losing, but gaining time. As long as I got in two hours of sleep sometime around 5:00pm, I would be recharged enough to have a full evening ahead, restocked with energy, stamina, and clarity. A two-hour sacrifice seemed like a small price to pay to make each evening bearable again.

For a while, I treated my nap as an occasional occurrence, but I realized I didn’t have the willpower to nap when I needed to. I was too distracted by to-do lists and other things. I needed to set up a constraint for myself so that I couldn’t talk myself out of resting each day. Thus, I made it a mandatory part of each afternoon, whether or not I thought I wanted/needed a nap. (Oh, I kicked, screamed, and threw tantrums about going to bed in the beginning.) But, most days, I slept for a solid two hours or even more. It was obvious my body was exhausted (which is probably why I was so cranky to begin with), but I still struggled to force myself into bed each day.

Today, however, my nap is a welcomed part of my daily ritual. I no longer quarrel with myself as I’m lying in bed, swearing that I don’t really need to rest. Instead, I look forward to the moment when I can shut my eyes and regroup, confident in the positive result.


"For the past two weeks, I've had at least two doctor's appointments per week"

SG - Is everything OK?! This post worried me!!!! xoxo
Sara Gorman said…
Don't worry!!! My doctor's appointments all came due at the same time - eye doctor to check for retinal changes due to plaquenil, regularly scheduled rheumatologist appt, regularly scheduled pulmonologist appt, and my 6 mos dentist appt. Whew! It was too much - but at least they were all happy to hear about my book. And I was happy to get the word out - you know the kind of cirlces those doctors run in!

Thanks for asking - it did sound like a lot!
Anonymous said…
Hi I just found your site through Facebook. I also have Lupus .. going on .. let's see .. five years now.

I suggest making all the appointments on the same days if possible. I often would have three to five appointments a week while I was working and I just couldn't take that much time off. As well as it being exhausting to have to deal with the doctor's office all the time.

I spoke to them when making the appointments and let them know I already had appointments that week and I wanted to double (or triple) up.

They always happily moved things around to accommodate me.

I hope to continue to read your blog. Great job = )
Sara Gorman said…
Great suggestion! Most doctor offices ARE accommodating, aren't they? You just have to ask!

Glad you stopped by - hope to hear from you again soon.

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