Conquering Lupus Fog

I am a pianist. I have lupus. I am a pianist with lupus.

When I received my lupus diagnosis, I had just earned a Master's degree in piano performance and enjoyed a performance-filled summer. Even though I was already working as a music professor and piano collaborator, I had plans to regularly perform recitals. But when lupus came along, symptoms of constant fatigue, arthritis, and cognitive dysfunction (also known as "lupus fog") took performing recitals off the table. I've had opportunities to perform single pieces and shorter programs as a soloist since my diagnosis, but nothing that exceeds 20 minutes. After years of trying to juggle life and work and lupus, and then choosing to do less to accomplish more (which included a very emotional decision to resign from being a piano collaborator), performing a recital is back on the table.

This journey is like preparing to do a marathon for the first time. There is a lot of physical and mental preparation that needs to be done. I have to be diligent in taking care of my body. I have to be disciplined in my schedule and practice. I have to build up my strength and endurance. And for this particular recital, I have to memorize 235 backwards sections. 

Wait...What? Backwards sections. When I was a little girl, my piano teacher taught me a method for memorizing pieces: Divide the piece into small, easy-to-memorize sections and mark them with a small asterisk from beginning to end. Then, number each section from end to beginning. That's right. Number them backwards. The very last section of the piece is section one, the second to the last is section two, etc. Start memorizing section one (which is a small number of measures) by playing it multiple times until it's memorized. Then play section two to the end until it's memorized. Then section three to the end. And then...I think you get the idea. From an early age, I learned my piano pieces both forwards and backwards. Literally. I never stopped using backwards sections and I teach all my piano students to use them, too. So back to the topic at hand...

235 backwards sections. The thought is terrifying. If you don't know, thanks to a nineteenth-century pop star named Franz Liszt, pianists today perform solo pieces (and full recitals) from memory. It's the standard performance practice for classical pianists. Thanks to my childhood piano teacher's backwards sections, I used to pride myself in my ability to memorize pieces. But lupus has made memory - even with hundreds of hours of doing backwards sections - extremely challenging.

Lupus fog is my most frustrating symptom. I have a very strong long-term memory. It's not eidetic, but it is strong. Yet at any moment, my ability to focus and remember things gets lost in a fog. Sometimes I can physically feel when it's about to happen, but usually it feels like my mind just stops and goes blank. I could be busy working productively on a project, in the midst of practicing, or in the middle of a conversation with a student, and then - BAM! - the fog. What am I working on? What key am I playing in? What was I saying? There was even a time when I was talking to someone and I couldn't think of a single adjective during the whole conversation. It was like every adjective was temporarily erased from my vocabulary. 

235 backwards sections. I could get to section 142 and - BAM! - lupus fog decides to pay a visit and I forget which key I'm in. Or - BAM! - I can't remember what notes come next. Or even - BAM! -  I lose track of which piece I'm playing. So, why don't I just plan to perform with the sheet music in front of me? Sidestepping lupus fog is not so simple. It can come even if the music is right there to (theoretically) save me. Even during my practice sessions, when I have the music right there, lupus fog can come and make it all appear incomprehensible. The solution does not lie in shortcuts.

The solution lies in work that is slow, focused, and demanding. I can't prepare my pieces with the expectation that, at the performance, my memory will be in...well...top performance. I'm preparing for every worst case scenario, making contingency plans for when my memory or fingers slip. I'm working habits into my fingers and mind, disciplining both my fingers and my focus. I'm practicing hard and praying harder. And I'm dealing with the fog when it comes while I practice instead of giving up or pretending it doesn't exist.

I am conquering lupus fog - not by wishing it away, but by facing it head-on. When it comes, I'll be ready for it.

Disney World and Lupus

I recently got back from a week-long trip to Disney World. The day we arrived in Orlando, we hit the ground running at Downtown Disney. The next six days was a theme park whirlwind: 5 days at Disney World and a day at Universal Studios for good measure. When we got back, every inch of my body hurt and I was exhausted. But I had so much fun and made so many wonderful memories with my husband that it was totally worth it. Don't get me wrong - I really was in a lot of physical pain. The way I pushed my body that week is not something I could do on a regular basis. But one exciting week can be good for the soul. Here's the thing: I didn't go into that week thinking that I could ignore the fact that I have lupus. I planned and planned and planned with lupus in mind. If I hadn't, I don't think I would have enjoyed myself as much as I did. So if you're planning a trip to Disney World with lupus or another chronic illness, here are some tips:

Before your trip, google it.  My sister-in-law gave me this advice: "Google Walt Disney World with lupus." I'm typically not an advocate of looking to the internet for wisdom, but I was able to gain a lot of helpful ideas this way.

Talk to your doctor. They know you. They know your illness. They know things. Tell them about your trip and ask them if they have any suggestions or special instructions. They're on your side...Let them help you!

Talk to the people you're going with about what you need...before and during your trip. My husband and I have been on enough trips by now that he knows the drill. He knows to help me find shade to keep me away from the sun. He knows that when we're walking uphill, it helps to save my energy if he lightly pushes me forward on the small of my back. He knows how to tell if I'm struggling, what kind of things are especially hard on me, and what he needs to do to help me. But still, I talked to him before we went about the things that I was worried about and what I felt I might need this trip. And it made things SO much easier when we were there!

Pack your day bag well. Carry what you need (in a bag that is comfortable to lug around for long hours). Do not carry an item more and not an item less. Everyone's needs are different. Here's what I had:

     - smartphone
     - portable charger
     - sunscreen
     - sanitizing wipes
     - lip balm
     - inhaler
     - peppermint oil (for pain or to help cool down)
     - small wallet
     - bottle of water
     - sunglasses + eyeglasses
     - eyeglass cleaning wipes
     - meds
     - poncho (This was not originally on the list. But then, Orlando weather happened.)

Listen to your body. Are you hurting anywhere? Are you breathing well? Are you feeling more tired than usual? You don't need to obsess, but be aware.

Be mindful of your triggers. Whether it's a certain food, sun exposure, cigarette smoke, or even spinning in circles (I'll discuss that a little more later), be mindful of things that can increase a flare or symptoms. You may not be able to avoid certain things altogether, but being mindful can help minimize your exposure to them and keep any flares at bay.

Stay hydrated. Drinking a lot of water will help you stay cool and keep your energy level from dropping to zero. (You can ask for a cup for ice water at all the eating establishments. This helps save a lot of money in the long run.)

Rest, rest, rest! How do you rest in a theme park? Get creative! In Disney World, when you get tired, that's a great time to watch a show! Sit when you're waiting in line (even if that means plopping down on the floor). Take a little longer when you're eating your meals. I even reconfigured our hotel room so that I could sit while doing my makeup. Every little bit counts.

While I'm on the subject of rest, I had a worry going into this trip: Will I be able to walk as much as this trip requires? My husband and I came up with a couple of contingency plans. We scheduled an extra day in in the Disney parks just in case I woke up one day and felt that I couldn't do it. This way, I would never wake up with the pressure of feeling like I had to push myself beyond what I was capable of and without the worry of missing any of the parks. We also decided that, if needed, we would rent a wheelchair. Even though we never made use of our contingency plans, it was comforting to know that we had them.

Don't push your body beyond what you know it can handle. Save your spoons! Don't use an entire week's worth of spoons in one day. This doesn't just apply to the amount of energy you exert. This also has to do with the kind of rides you choose to go on. There was one in particular that pushed my body too hard. To be fair to Disney World, they had an intense version and a less intense version. My adventurous husband wanted to do the intense version. He didn't pressure me into anything, but I didn't want to look wimpy, so I didn't voice my concern...even after the multiple warnings on the pre-ride video that instructed those prone to motion sickness or sensitive to fast spinning to change to the other line. I kept telling myself, "It won't be that bad." But as the ride started, my body said, "It IS that bad!" And as soon as the ride ended, I rushed to the restroom and lost my lunch...along with a few too many spoons.

Bring just-in-case medication. I have to take immunosuppressives to keep my lupus in control. So going to a big theme park where I would be surrounded by thousands of people from all over the world is risky business. As I was packing for the trip, I said to myself, "I am not going to need all this extra medicine." I was wrong. Two-thirds of the way through the trip, I felt something scratchy on my throat and didn't have any just-in-case meds to take care of it right away. By the time I came back home, my immune system had gone into attack mode and caused my throat and thyroid to become swollen to the point where I was in a lot of pain and had a hard time breathing. A few days later, I had a six-hour adventure of being shuffled from clinic to clinic to have an inordinate amount of tests run to make sure I wasn't in any serious danger, all to find out that it was just a virus - a very stubborn virus that is taking its sweet, precious time to go away. Oh, how I wish I would have just packed some extra vitamin C and Mucinex!

Schedule rest before and after the trip.
If I had a 9 to 5 job that I would have to return to the day after arrival (like my husband), I wouldn't have been able to push my body as hard as I did. I have a light schedule during the summer months, and I have the added benefit of being able to control my hours, so I planned for a possible post-Disney lupus flare. Don't just hope that you will magically get the rest you need. Plan for it!

The goal is to make a lot of great memories - not to do everything. This is really hard when you are a type A personality. It is so easy to get task-oriented in a theme park. There are so many wonderful things to do! But unless you are going to be doing multiple days in one park, you simply can't do it all. We did two full days at Epcot and still didn't do everything that could be done there. There are so many things we didn't have time/energy to do, but our days were full and we came home with a lot of great memories we'll hold onto forever.

Choose to focus on good things. When your body is not working or people start acting ugly in the lines, choose to focus on good things. I'm not saying to ignore reality. (That would go against what I said earlier about listening to your body.) But don't let frustrations be your focus. And don't let your health or other people decide your emotions. Going to Disney World is a wonderful privilege, so don't waste your time there on negativity. There were a lot of things that could have made me feel down, but I chose to focus on my beautiful surroundings and the wonderful opportunity I had to get away with my husband. So every time something not-so-good happened, I would say, "I am not going to let that get me down because I am in the happiest place on earth!"

Have an amazing trip!!!