We all know how vacations and traveling used to go, before being diagnosed with chronic illness. We would plan to head somewhere nice for a holiday, we would experience new culture and see amazing sites, we would perhaps eat or drink more than we planned, and we would come home exhausted, but with our hearts and bags full of new experiences and stories that replenished our cups and gave us a new perspective.
But once you have a chronic illness – especially one that comes with pain, and medications that change how our energy flows – you know that you often begin the experience exhausted. Perhaps you’re not up for even the packing stages of vacation. Maybe you can’t even think of how you will travel without needing a break after to recover from car, plane, or train travel.
Is this it? Are we just to resign ourselves to staying home while our family travels? Do we keep our families home so we can all have a “staycation”? While these are both completely valid ways to spend “time off”, what if we don’t want to? What if we still long for a fun family vacation- or even a trip for the holidays to visit loved ones?
There is a compromise. There is a halfway point. There is hope for a happy family vacation. And it is so mind numbingly simple that it took me two years of rotten vacations and travel depression to figure it out. But we shouldn’t all have to go through that.
So, we all know how hard it can be to watch our family have fun while we languish at home. For a while after my diagnosis and onset of symptoms, I thought I would just be languishing at resorts or hotels while my family had fun. Thankfully, it didn’t have to be that way.
I will walk you through what I do (and yes, it is planning on the front end, so choose your favorite way- notes app, Facebook, plain old notebook- and get ready to plan), and we will take a holiday together.
Planning is Key
First, I set up a place to centrally locate all of my information. I really like making a private Facebook group to which I invite any adult we will be traveling with or visiting- but I have also used shared note on the iPhone notes app, google drive spreadsheets, and notebooks with a plain old pen.
Next, I explore online and see what there is to do. This part is reminiscent of being a kid and being at a rest stop on a trip and picking up brochures from every state we drove through. I information collect- big physical activities that I know my 7 year old would love, museums, galleries, live music or theater; I hit up some of my favorite travel apps: AllTrails (for hiking, they have helpful filters so we can see how difficult a trail might be, or what is even ADA accessible), RoadTrippers (for fun, often offbeat, things to do), and Playground Buddy (for playgrounds and parks) and search the areas that we will be staying, as well as what might be exciting along the way (if we are driving). If we are staying at a resort, I also connect into their app or website to see what they offer. Pools? Guided tours or hikes? Game rooms or art classes? A salon or spa with massages? At this point, I would suggest also looking at what type of activities your family enjoys. Sports or sporting events, movies, religious sites, and other things… make it centered to your family interests.
This is where you list everything you would do if you had both unlimited energy (and money!) and a month where you’re staying. The key here is to fill your binder or your Facebook group with 6 or 8 options per day. When working with the notes app or Facebook groups, I like to use hashtags – both for days/times (like “#MondayAfternoon”) or specifics (“#RainyDayActivity), or even deals on price (“#HalfPriceAfter4”). When I am working with a spreadsheet, I color code things to keep track of days or costs.
The point of all of this preplanning is so that when you’re there, you can gauge your energy or pain level and then search the day hashtag and figure out an appropriate activity.
I found that when I was in the midst of the worst pain days, I would get so discouraged and just send my family to the pool or to go do something fun, and we all missed out on being together. This planning solves that. I am able to wake up and figure out what I would be able to work with on that day- and we chat about it in the morning and agree on something for us all to do.
Now, even on vacations, I can have a really rough day. So that is why we also list events that we wouldn’t participate in- so those days, I can stay back and get a massage or take a bath, or even just read in bed- and my family can do the zipline or whatever I wasn’t going to participate in anyway.
Packing
Another way to solve some of the pre-travel stress is to have some master packing lists. I have created some spreadsheets for myself and my daughter that have columns titled “clothing”, ”toiletries”, and “when necessary”… I just go through and select fields to print out, and that way she and I just have to assemble whatever those lists call for (my husband also has one, but he is in charge of that, of course).
I also have a spreadsheet for anyone who is watching our dogs, cats, chickens, bees, gardens… that way, I don’t have to take the time and energy to put the thought and labor into these things every time we travel. Sure, it only takes a few minutes, but that accumulates, and there are so many other ways to spend our spoons.
Travel with Friends
Something I have always loved to do (and had always envisioned doing with my family someday) is go to multi-day music festivals. When I was first diagnosed, I thought there would be no way, considering it would dump everything (including caring for me) into my husband’s lap- but it turns out all I needed was a multi-family approach!
This summer, we traveled with another family to a music festival. It happens that, when our kiddo was 2, she found another kiddo to play with on the lawn at a show. Fast forward 5 years, and that whole family has become extended family to us. So this year, when that same band announced a multi-day festival, we decided to go for it together!
Now, in addition to having my normal spreadsheets, this gave me an entire other set of parents to rely on for help, and co-care for our children. I was apprehensive, of course- what if I couldn’t handle it and needed a day off (or more) at the hotel? What if this venture was a waste of money? But I had my ace up my sleeve. Another Mama. I was able to get an ADA bracelet that allowed for transportation to avoid having to walk nearly two miles in each direction to and from the stage area. I was able to bring in a wagon with a blanket to sit on. There was shade on site, and water refill stations. And best, when I did need to leave early one of the days, my husband was able to help care for me and get me home safely while the other parents kept our little one there, dancing and having fun.
Did I dance as much as I would have, back before all of this? No. But I was able to have a beautiful time with our combined family, and I was able to enjoy something that I thought for sure I wouldn’t be able to do.
Having said this, I can tell you that we will be traveling with friends more in the future. (For the record, we also watched their kiddo when they wanted some time to be alone, and it was wonderful to know that most of the time, four sets of eyes were on our children!)
The Take Away
As with many things in life, pre-planning can take a lot of the stress out of it all. I wasn’t always a planner. This was a skill I needed to develop over time, which is probably why it took me a couple of vacations to figure it all out. If you have anything that already works for you, in terms of planning tools, I am sure they can be incorporated into this type of planning easily. Let’s not reinvent the wheel if you already love Cozi or whatever app or system. But the point is that we are all able to adjust our expectations a little and still have an amazing trip. Happy Travels! See you on the road!
