Having a chronic illness is always hard, but it can be especially difficult during the summer. Why? Because summer is when everyone is having fun and being carefree! People want to call and hang out with you on very short notice, and often times hanging out can mean going to the beach or to an amusement park or going hiking. These are all very tiring activities for someone with a chronic illness. But what may be the most difficult about the summer months is going on vacation.
Right now you are either scratching your head thinking, “Why would a relaxing vacation be difficult?”, or nodding your head and thinking, “You’re preaching to the choir girl!” Allow me to explain for those head scratchers. For healthy people, yes, vacations are a fun escape from everyday life where you get to do something new, visit somewhere exciting, or just relax on a beach. For us spoonies, vacations are a stressful, uncomfortable, and a tiring week of craziness. Packing takes energy. Traveling is often painful and energy taxing. And believe it or not, even the vacation itself is uncomfortable, draining, and painful.
Last month I was lucky to enough to get to visit New York City for the first time with my mom, sister, and aunt. My loved ones had planned this trip for my sister and I as a graduation present since I had just graduated with my Associates degree and my sister had just graduated high school. When my mom told me we were going I was of course happy and thankful, but another part of me, an admittedly big part, was dreading the trip. I knew the trip would not only be painful and tiring, but that I would slow the rest of the group down. I almost told my mom I didn’t want to go, but it was such an amazing opportunity, and she had put so much thought into the trip. So instead I decided to do what I always do, fight through my illness and try to have a positive attitude while doing it.
As the trip approached, I became more and more nervous about going. I wasn’t feeling well, and I didn’t go on a family vacation to the beach one year because THAT was too much for my pain filled and exhausted body to handle. How in the world was I going to walk all over New York City for five days? So I turned to people I knew would understand: my spoonie community online. I expressed on Twitter and Instagram how nervous I was about going and I received some great advice! With fellow spoonie’s encouragement, I went on the trip and had a great time!
I learned so much on that trip (and many others throughout the years) about traveling with a chronic illness, so I decided to share that wisdom with all of you. It is summer after all and many of you may be heading off on vacation soon. So here are my tips for enjoying your vacation with a chronic illness:
- ACCEPT YOUR LIMITATIONS. This is a crucial step you must complete before even contemplating going on vacation. You must accept you will not be able to keep up with your healthy fellow travelers. You just can’t. You will have to take more naps, sleep more at night, and miss out on some of the activities. Just accept it now, because you know I’m right. But don’t worry, with the right planning and preparation, you can still have plenty of fun!
- Plan activities with the minimum amount of activity. No matter what kind of vacation you are going on, it’s always good practice to have some kind of loose itinerary anyway. This is especially important for traveling when you have a chronic illness. You either want to be a part of creating the itinerary, or have someone who understands your limitations planning it. That way they can try to plan activities with a minimum amount of activity. This means instead of taking a walking tour, you take a bus tour instead! Or calling ahead to make sure the building you’re touring has elevators and handicap accommodations. You basically want to make sure you’re spending the minimum amount of spoons possible.
- Plan where you can take a break. If you have an idea of what everyone plans on doing, you can then plan what you are going to be sitting out on. Because you’ve already accepted your limitations, you know this will have to happen. You won’t be able to participate in every single activity planned, but if you look at the schedule, you can make sure you participate in what’s most important to you. For example, when I went to New York I knew I had to see at least one Broadway show because I love musical theater! I knew I was going to a show the second night at 7:00 pm, so I made sure I took a two hour nap back at the hotel before I had to start getting ready. This way I wasn’t completely tired out and falling asleep or distracted by a high level of pain during the show.
- PACK APPROPRIATELY.
- Pack and plan your medication at least two weeks in advance. Basically, make sure you have enough medication to last during your whole vacation, including enough to handle the flare of pain that WILL happen due to the vacation. There is nothing worse than realizing at the last minute you are out of a certain medication. This results in scrambling, many phone calls, and stress that can easily be avoided if you just plan ahead. Check your medication ahead of time and you will have enough time to see your doctor before you leave.
- Pack to make yourself comfortable. I once wrote a post about how your bed becomes your home when you have a chronic illness because you get to a point where you have everything set up just the way you like it. Although, you won’t be able to achieve that level of comfort (especially if you’re flying to your destination), do pack enough to make sure you CAN sleep! Painsomnia sucks and the last place you want to be suffering from it is on vacation. So pack a blanket in your carry on, request extra pillows, and make sure you will be able to set yourself up in a position where you will be in a minimal amount of pain. I learned that one the hard way.
- STAND UP FOR YOURSELF.
- Stand up to your fellow travelers. Whether you are traveling with family, friends, church group (etc.), you need to make sure some or all of the people understand your limitations, and don’t push them. On my vacation to New York, my aunt knew I had a chronic illness, but didn’t really understand the limits it imposed. She wanted to walk for miles on end, and when I said I needed to go back to the hotel and rest, she always wanted me to do one more thing before I went. I didn’t stand up for myself and this resulted in me having to spend an entire day resting because I was so worn out. I know her intentions were good, but I regret not standing up for myself more.
- Stand up for your sleep. Sleep, if you can get some good hours in, will drastically improve your vacation. So whether that’s telling someone you need to go take a nap, or declining an invitation for a late night adventure so you can get in your full eight hours, make sure you stand up for yourself. As long as you explain your situation to your travel-mates in a calm, kind, and reasonable manner, you shouldn’t have too many problems.
- HAVE A GOOD ATTITUDE. Author Shannon L. Alder said, “When you are joyful, when you say yes to life and have fun and project positivity all around you, you become a sun in the center of every constellation, and people want to be near you.” I believe this to be very true, especially for this post. Although I used to hate it, my mother always says, “You have to be someone people want to be around”. Sometimes we get so caught up in our own struggles, we end up snapping at everyone and being cranky, and that sucks the joy out of the vacation for everyone else. Believe me, I understand being in awful and not feeling like being pleasant. But remember that this isn’t just your vacation. If you have a positive attitude not only will others enjoy the vacation more, so will you.
Well those are my tips for how to enjoy your vacation, despite a chronic illness. I hope they are helpful to you! I need to follow my own advice as I’m going on another family vacation in a couple of weeks. Here’s to hoping this one doesn’t wear me out quite as much!
A big thanks to Stokpic for the completely FREE original photo I used as my graphic for this post!