So I’m going to start by saying, I am so thankful to have the opportunity to go on vacation from time to time, thanks to the generosity and support (financial, logistical, and otherwise) of my extended family. Vacations are an amazing privilege, and I don’t take a moment of my time away (at this case at the Jersey Shore) for granted.

That said, going on vacation is emotionally and physically complicated when you live with a chronic illness.

I start every trip that I take in some amount of pain. No matter how much my beloved husband helps me, some things I just need to pack or carry for myself. Some things I have to write on a packing list (or check them off as I pack them) myself. And any significant amount of car travel is difficult, even though I’m not the one driving. So I arrive at my awesome vacation destination, needing to unpack at least enough things to get through my evening routine (where was that toothbrush again?) and already struggling.

Then I’m outside my usual routines. This can be amazing–who wouldn’t love to watch the sun rise over the Atlantic, or wander the boardwalk with her daughter after their usual bedtimes, or eat ice cream on a whim in the middle of the day?–but it’s also really challenging.

Out of my habitual context, I’m asking more of my body, both because I want to and because I feel I have to, to keep up with the group. There’s an implicit pull in being surrounded by able-bodied people with later bedtimes than mine. Thankfully no one in my family or among my friends blames me or hassles me for my early bedtime, but I often feel like I’m missing some of the fun regardless.

Out of my familiar surroundings, it’s really tough to keep all of my self-care in place to feel as good as I can so I can enjoy my experiences as much as I can. Each increment of PT exercises, traction, or rest comes at the expense of other activities (or responsibilities) and it’s an intense balancing act when I feel like I’m trading these necessities for fun I could be having or asking more of my support network than I really want to.

There’s also the mental and emotional toll of educating my fellow vacationers about what I can and can’t do, what help I need and what I don’t. There’s the constant calculation of setting good boundaries with myself around food, and rest, and activity. I can’t begin to imagine the extra burden on my fellow chronic-illness community members when traveling with restricted diets or chemical sensitivities. (Spray-on sunscreen. Seriously. WHY.)

So. I got a lot out of my travels, and I wouldn’t have missed this trip for all the world. And it was difficult in some ways, and I honor that complexity and that struggle as well.