During the month of November, my friend and blogging colleague Maria Pfeifer at My Life Works Today kindly hosted a book discussion of Despite Lupus on Shelfari. The participation was great - and there were some fabulous questions posed by readers and Maria alike. Some were more DL specific than others, but I enjoyed all of the comments, questions, and feedback. It was great to connect with others who could relate to the situations and experiences I wrote about in my book. There are so many people who understand out there - it's amazing!
I thought I'd feature some of the dialogue from that discussion on my blog from time to time, starting with a question about how I manage my book tour travel. The question was posed by one of the participants, and I can tell you it didn't take me long to craft an answer - this is an issue that I've had to deal with from the very first signing I did. Whether it's flying across the country, driving two hours, or heading up the street to my local coffee house, every signing I've done has required forethought, strategy, and usually a little compromise. I'll let the question, and subsequently, the answer, explain:
QUESTION: So, my question to you Sara, is: how do you keep your lupus under control while traveling? I find that traveling is one of the hardest things on my body any more and I have learned that sometimes it's just better to stay home rather than deal with a possible flare. I admire your ability to make appointments to do a book signing with the assurance that you'll be able to commit to it and perform well enough to convince people to buy your book!
ANSWER: That’s a great question – and I actually started to expound on my travel limitations in my last response, but figured perhaps it would come up later in our discussions. So thank you for asking!
First, I’ll mention that when my disease was active, travel was the first thing to go. My husband and I found it particularly difficult to stay put, but it became crystal clear that every time I’d hop on a plane (or even in a car for more than an hour or two), I would flare. I think the stress, fatigue, and exertion involved in packing, commuting, traveling, etc. was just too much for my lupus-ridden body to handle. So it had to go. We cancelled vacations, postponed others, and became extremely conscious of our out-of-town commitments. I skipped a lot of trips…which stunk, but knew that staying home was the best way to keep my body stable. And during those weekends when I stayed home? I’d sleep, sleep, sleep! I’d be lucky if I made it down my driveway to get the mail, much less across the country. I realized that traveling was the last thing I needed to be doing.
But, knowing that traveling was a hobby that I really enjoyed, I had the goal of being able to work it back into my plan. I started slowly, and came up with a few fool-proof guidelines that I still adhere to today:
1) Allow a day before and after travel to recover: The day before I travel, I scale back on everything – errands, cooking, events, etc. – and the day after, I cancel all plans so that I can rest up and recover. At this point, I’m able to have a semi productive day before and after, but there were times when I would faithfully take an extra day off of work after my trip in order to make sure I could recover. It was a full day of doing nothing and it really helped.
I also take extra days during the trip to make sure I’m rested up TO travel – I found that weekend travel (like a Fri through Sun) is too much. When I can, I book a few extra days so that my travel days aren’t too close together. My husband and I used to be quite the weekend warriors (b/c a weekend getaway was a cheap, quick, nice way to vacation)…but now that we’ve determined it’s just too taxing, we opt for longer, more relaxing vacations.
I’ve had the luxury of staying with friends or family on several of my out-of-town signings…so I’ve just extended my travel plans to spend a few extra days relaxing before heading back. In fact, when I was in Indiana in August, I had three separate events…so I had to be very strategic about booking each of those with a couple of days in between, PLUS allow for time on either end to relax before traveling. It was a week and a half trip…but I felt great before, during and after!
2) Never travel during my nap time – This one can be tricky…but it’s just a limitation I’ve learned to work around. My husband, in particular, has been great about scheduling flights, departure times, or making commitments on the other end of our travels to accommodate my nap. We just know that mid-afternoons are off-limits, unless I can fit in a good rest before or after. And I’ve learned that napping in the car to and/or from an airport doesn’t count.
And during my recent trip to South Bend, I had to make a choice between traveling during my nap or my daughter’s nap. It was just the two of us flying together, and figuring that the most important thing is that I be rested (in order to handle any of her shenanigans), I opted to fly back home right in the middle of her nap. Turned out I was right! Because I wasn’t trying to fight fatigue (or swollen joints for that matter), I was in the right frame of mind to help her power through the flight. She did great…but I know it would have been a sad scene had I tried to skip my nap!
3) Plan, plan, plan: I always consider how my travel days are going to play out – often times calling ahead to a hotel to ask for special arrangements to nap, skipping visiting time with family or friends to rest, or booking events according to my own needs in order to make sure I’m not pushing myself.
For instance – I had quite a time settling on a date and time for my recent signing at Notre Dame. I had a choice of two time slots – from 2-4pm or 3-5pm – prime hours for traffic/exposure/etc, according to the bookstore. But neither worked for my nap schedule, and since I was traveling in that same day, I knew I couldn’t skimp on my rest. Thankfully, the University was extremely flexible (booking me from 4-6pm, and moving something else around), and my aunt and uncle (and dad) who hosted me for the event were very accommodating (ushering me to bed at every turn and chauffeuring me so I could rest and relax). Everything worked out – and I felt great!
Because I do have limitations, however, I have been forced to decline several events simply because I couldn’t make the travel arrangements work. It’s a bummer…but the worst thing I could do is show up for a signing (for a book about living well) and be sick! So first and foremost – I keep my health a priority.
Most importantly, because of these book signings, I’ve had the chance to realize two things:
1) Having met hundreds of people with lupus, suffering from the physical ailments of lupus, I’m reminded just how sick I used to be. These people are struggling to put one foot in front of the other, and it reminds me that not so long ago, I was, too. I’ve worked very hard to be healthy, stable and strong….I can’t ever forget that. My disease activity didn’t all of a sudden just go away – I had to work at it. Those steps I outline in my book make up the actual blueprint I used to get healthy and live well, and I have to continue to work those steps (not overextending myself, passing up on engagements here and there, etc.) in order to maintain my current state of health.
2) When I show up for these signings…it’s inevitable that someone comments on my appearance – on the fact that I look so healthy. Of course, I’m flattered, but I realize that looking and feeling well (and being able to project that wellness) is an important part of my message. I suppose if people are able to see that I’m perfectly mobile, without an ache, a pain, a fever or swollen gland, or even a tuft of hair loss, and doing what I’m doing, perhaps it’s a symbol of hope that life with lupus can get better. That life can improve….despite lupus.