The past five weeks have been crazy. I have another week and a half to go.
To put it another way, I have spent a lot of time outside New York. Since the last week of August I have been to Pennsylvania, Maryland (twice), Delaware, New Jersey, Massachusetts, Tennessee and North Carolina.
I’m about to add California (this week) and then another trip to southern New Jersey (next week) to that list.
In fact, as of today I have finally had a full week at home for the first time since the middle of August, but, of course, I’m heading out tomorrow, so the streak isn’t going to last!
This past week has been anything but dull, though. Throw in 2 fundraisers – one of them a black tie gala where I had to speak on stage – and a wedding, and I’ve spent a lot of time on my feet.
By the end of next week, I will have been on the road 20 of 47 days, and all of it will have included 6 speaking engagements, 2 fundraisers, 2 clinic appointments, a wedding, about a billion meetings, and (thankfully) a handful of vacation days (though, those were at the end of August, which seems like an eternity ago).
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Really tremendous day full of meetings… and a talk at National @cf_foundation !! ⭐️⭐️⭐️ I look forward to seeing some of the things we discussed today – promoting patient leadership, streamlining the Registry, creating transparency for the community and prioritizing mental health – being widely implemented throughout the patient population, and I hope that effective change will transcend the evolution of care provided to people living with CF!! #cffighter #cysticfibrosis #cfirl #cysticfibrosisawareness #cysticfibrosisfoundation #motivationalspeaker
Granted, I am doing all of this to myself. It is a luxury to be busy when you’re living with a chronic illness. I overload my work schedule whenever I can so I can get as much done as possible while I’m feeling good. I also like to make the most of my trips (when I do have to travel) – like last week in Tennessee; I stayed an extra weekend day to go to the Volunteers game.
All of this begs the question, though, how have I managed to stay healthy?
Well, the mayhem is still going for another 10 days, so we’ll see if I can make it through in tip-top shape, but I’m confident I can based on the way it has gone.
The key to all of this is discipline.
I have been finding rest hours wherever and whenever I can, staying compliant with my treatments, eating as well as can be, and utilizing my support system, while also being honest with myself about my health.
The rest hours are important because I am the type to get run down really quickly when I travel. For example, I spent a lot of time the hotel room when we were in Tennessee last week. Aside from the day of the game I was in bed by 9 each night, and asleep a little after 10. Knowing my body’s limits has helped me be as successful as possible. I’m hydrating, eating well and of, course, making time for the Packers – that’s 3 hours of down time right there, people!
My support system has been invaluable during the past few weeks, and will be for the next several as well. I have leaned heavily on them for help – especially my mom and Darcy – from little things like sterilizing and packing to some larger stuff like having Darcy run out to grab take-out breakfast in the morning, so I could have a little extra time to sleep before doing my nebs.
In fact, since Darcy is between jobs right now, she has made most of these trips with me. She has been volunteering her time to learn as much about the CF Community and our needs as possible, so she can use her training as a mental health professional to develop some patient engagement and empowerment programs for us at BEF! She has been a valuable rock to lean on during the past couple of weeks.
My colleagues have also been a huge help, especially with listening to some of the feedback I bring home from all of these places. Believe it or not, our country isn’t so small – people have quite a few different opinions and needs out there. I see my travel as an information gathering opportunity to help make our programs better.
My treatment routine sort of adapts to my needs on the road. It is a challenge to keep that time of the day constant in the midst of changing locations and differing needs from one place to the next. But… it’s a priority, so I make it work. I know I won’t be able to do any of this if I don’t have my health.
It is a myth to say that traveling gets in the way of treatments. Not a single part of that line of thinking is true. Treatments must always remain a pillar of the day, regardless of wherever I am.
Finally, being honest with myself has been the most important part. When it’s time to go home, it’s time to go home. When it’s time to ask for help, it’s time to ask for help.
Yes, I am different from everyone else, and yes I have different needs. If I can address each need – treatment time, good eating, sleep, etc. – individually, then I know I have the best chance to succeed. To that end, I am confident enough to ask for help when I need it. Why? Because I know everyone in my life wants to see me succeed as well… It’s easier to make all of this happens if we work together.
…then maybe I might take a few days off once all of this is over.
…and that’s what I’m thinking about this morning.
image: courtesy Samsung