Living with a chronic condition not only makes simple things more difficult but it puts us in the position of observing life and not really participating in it. We manage to set a norm to function in our day to day from scheduled rest periods, easy access to getting our hands on equipment needed. I know I laughing say that a routine is a big key in management but this takes away from spontaneity which can bring a lot of fun and excitement. Trying to present a normal as possible for my family has always been important hoping it would reduce their stress having to continually think about me being sick.
Then one day, the family says let's go on vacation, stating it has been a long time since we had been on one. Everyone is excited and wanting to start planning. In my head the anxiety starts to rise from questions like when, where, how long etc. I'm smiling on the outside trying to share their excitement while remembering I can barely plan tomorrow. We want to be excited, we want to go, more than most we want a vacation away from our daily health issues. Is there a way we can leave this behind as well? So next we listen closely to suggestions, trying to help navigate a direction which might be more "friendly" to allowing us to have the rest periods or access to tools we need to survive trying hard not to also make this about us again. They want NORMAL as much as we do which makes it a little more stressful. Cold Weather really makes my condition more difficult. So of course my fingers are crossed for a warmer climate location. Will there be a long car travel involved? Staying in one position for any amount of time accelerates my pain. Will this mean asking for frequent stops? Air travel, will I be needing to plan around needing to bring a wheelchair, oxygen tank, devices like heating pads, ice packs, muscle massagers, etc. Next the list of everything you use daily that are at your fingertips that we don't give a lot of thought to. Will there be massive amounts of walking especially needing to move quickly to meet the next schedule event? The list of concerns are endless but they are important. We really want to be a part of this journey, we really want our family to have the best time ever but more importantly, I don't want it to be another bad memory of how my illness interfered in what have been the vacation of a lifetime.
The most important things I can do is be honest from the beginning. Set limits for myself so I can enjoy everyday. Make clear that we all don't have to do the exact same thing at the same time. Find out what the most important experience(s) that my family want to achieve helping to make that my priority to be present and experience with them. I may not get to ride that big rollercoaster, ride across water or a field on a cord, even climb to the top of the mountain. What I can do is try not to complain, encourage their independence, take lots of pictures, sit at meals with them to discuss accomplishments plus assisting with setting their next goals. One lesson I have learned over the years is that it isn't being able to paraglide or perform other extremely physically activities with them since they know our limitations it is being present with them at things we can such as a popular bar/restaurant or sharing a new culture event that isn't available at home. A family respects everyones needs, desires, and yes limitations. Hopefully when looking back at our vacation pictures we are smiling & laughing about the good times not sad about it being a miserable trip. Make a list of what you need, have an open line of communication from the start, don't make it all about you, and yes even challenge yourself to accomplish maybe a little bit more that what you think you can or be so quick to say no as I have even surprised myself at times. Most of all have fun and make memories.
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