The past few weeks have felt a bit frustrating and emotional.  As I approach my 6 year “crashiversary” I find myself frustrated that my “recovery” is not complete.  On a bike ride this morning with my former neighbor, we talked about this frustration, and as she always does, she grounded me and pointed out just how far I have come. She reminded me about all the times I had to text or call her and ask her to take my dog out for a walk because I was not capable of even walking around the block without falling over. She reminded me about all the times we would chat on the porch and my eyes were going in different directions and she could tell I was not cognitively “there”.  She reminded me about my husband having to do all the grocery shopping, and my husband or my mom making dinner for that entire first year.  When symptoms pop up now, it is so easy to be frustrated, but she is right, I have dramatically improved. Sometimes you really need that outside perspective.

A couple of weeks ago, we headed out with friends for a week of camping, biking and running.  The trip did not go as planned, and due to insane mosquitos and biting flies, wildfire closures, smoke, thunderstorms, and locust infestations, we basically had to make new plans every single day. It was exhausting and stressful. I am a planner, and part of the reason I plan so much is that in the moment is it difficult for me to make decisions. When that started happening every single day, I started losing it.

Ironically, a big reason it got so bad during this trip is that I was trying so hard to be “fine”. Okay, and there was also the bit about getting zero sleep the first night in a super great hotel in Laramie with an air conditioner that sounded like a jet engine, that may have not started things off on the right foot, but I digress. After 6 years of my disability being a limiting factor in so much of our life, I am over it. I want to be fine. I want to pretend it isn’t still an issue. So I pushed through. I felt myself cratering. My cognitive fatigue and anxiety started to rise, everything inside me was saying “I just need the world to stop for a minute”. This was my cue to take a nap, or at least lay down, turn off the lights, and have some quiet alone time. Instead of respecting what my brain needed, I responded with “THIS IS VACATION, YOU WILL HAVE FUN. DON’T RUIN IT”.

I didn’t say anything to Josh or my friends about how I was feeling. I didn’t say that every single time I unzipped my duffle bag I wanted to cry. Even with clothing dividing into different luggage cubes to make it easier for me to find things, it was very stressful to search through the bag. I had to close my eyes and take deep breaths to avoid the rising panic. This feeling also came up every time we started the “what are we going to do now that we can’t do X” conversation.  Trying so hard to hide it and be “fine” was exhausting.  Towards the end of the week, I reached a breaking point. I spent the evening alone in our hotel room, crying, wanting to go home, at one point so overwhelmed that I actually threw my phone across the room. We lovingly refer to these irrational emotional outbursts as “full toddler mode”.

In hindsight, this could have all been avoided if I listened to any of my own advice. One of our friends on the trip asked “why didn’t you just say something?” The answer is that I didn’t want to admit to myself or anyone else that I wasn’t actually fine. Fake it ’til you make it, right? For years I could not get through a day without napping. Early on it was several naps a day, and that decreased over time. I haven’t consistently napped for a couple of years now. However, when I get stressed, that downtime becomes a necessity again. On vacation, I tend to want to go-go-go. I don’t want to miss out on anything. I need to accept that I am still not there, and if I want to “go”, I need to stop first.

So that is my long rambling introduction to my traveling tips. And although we did manage to have fun on the trip, and enjoyed some beautiful scenery, hopefully, I will remember to read through these again before our next trip:

1. Plan ahead. Making decisions ahead of time will make each day less cognitively demanding- where you are staying, options for restaurants, options for sites to visit, etc.
2. Have options. As listed above, plan some “options”. If you aren’t feeling up for it, don’t do it. Go for a walk, sit and drink some tea, listen to an audiobook, take a nap. If you have “must-dos”, schedule those on days by themselves.
3. Schedule breaks. Don’t fill your entire day. How far along you are in recovery will dictate how much you can do. Overfilling your schedule will not make it more fun.
4. Open discussion. Make sure you talk to your traveling companions, both before and during, about how you are feeling. Having these conversations will help everyone, including you, understand what you need.
5. Organize luggage. Making things easier to find with luggage cubes, or staying somewhere that allows you to take everything out of the suitcase, can make it less stressful.
6. Reduce overstimulation. For flying – noise-canceling headphones, a hat, and dark glasses will all help reduce overstimulation. Ask to board early. Brain injury is a disability. We often asked to board early, and it was so much easier than standing in the crowded line, shuffling down the jetway.
7. Pack ahead.  Scrambling to pack the day before, or the day of is a recipe for starting the trip stressed.  In the early days of my disability, I would first make a list to organize what I needed, and then I would start packing a little bit at a time, a week or two before the trip.
8. Grant permission.  If you need to nap, that is okay, but remember, it should also be okay for your traveling companion(s) to go do their own thing too. Give them permission to do their own thing while you rest.
9. Respect yourself. Listen to yourself and respect your own limitations. Slow down if you need to.  It is vacation, it is supposed to be fun.
10. Be realistic.  Your disability does not take a vacation, just because you do. It will not be like vacations of the past, but it can still be great if you give yourself some grace.

Stay tuned, as there is definitely some scheming in both professional and personal goals, including the possibility of another 100 miler next year…