Realistic Expectations

What we, the chronically ill and disabled, expect from our bodies on a daily basis or while on vacation can make or break our experiences.  It is common for those newly diagnosed or those who have yet to accept that their condition is here to stay to make plans the way we used to when we were well.

Sometimes we get caught up in the excitement of knowing we are going to get away from our daily lives that we forget that there is no escape from our conditions.  Unfortunately, this leads to disappointment and frustration when our bodies fail to allow us to do everything we had hoped to.

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When making plans, we must always keep our conditions and limitations in mind.   It took me close to 10 years to accept my conditions and to begin planning my daily life around them, and a few more years until I began planning outings and vacations with them in mind.  Here are a few tips to help you plan your next getaway:

• If you can barely handle a weekly trip to the grocery store, don’t expect your body to be able to handle outings that require you to stand or walk for more than a few hours at a time. This doesn’t mean that you should totally avoid these types of activities, instead, think of ways to make them work for you. This may mean bringing or renting a wheelchair or scooter.

• Expect your pain level to be higher at the end of the day and for the days to follow. Back when I was well, I would push myself. I would be sore by the end of the day but felt fine after a good night’s sleep. With my chronic conditions, I not only feel worse by the end of the day, but I begin each following day with a higher level of pain than I did the day before.

• Expect to need more pain medication than you usually do. Your average amount of daily medication won’t cut when you push yourself to do more than you usually do.

• Expect to be worn out when you arrive at your destination. Let’s face it, traveling is exhausting. Because of this, I have learned to gift myself with a minimum of one day’s rest. While writing this, I am on vacation in Denver, CO. My body and soul are thrilled that I planned 3 whole days without any reason to leave my hotel before getting together with family and taking in the sights. Typically one day would have been fine, but the weather forecast made me realize that I would need more. I knew I had made the right decision when a day that was forecasted to have light snow turned into a blizzard. While feeling beat up by the weather, I am in better shape than if I had scheduled any outings during those days.

• Expect downtime after you return home. Gone are the days of returning home on vacation and resuming my everyday life. I try not to schedule any commitments during my first week back home. If I am lucky, I won’t need that much time to get back into my daily groove. Sometimes I need longer, especially when I don’t follow my own advice!

• Don’t expect to have the same experience as your able-bodied friends. Planning a trip based on the experience your able-bodied friends had is a recipe for disaster. There is no way you will be able to replicate their experience. Be happy with what you can do, and NEVER compare your experience with someone who doesn’t have the same conditions and/or limitations!

This may sound silly, but when I am planning outings or vacations, I visualize my conditions as additional passengers.  By thinking of them as individuals accompanying me, I am better able to plan for their needs.  It’s kind of like planning a trip with an infant or small child.

I think of all the things I do and use on a daily basis to keep them comfortable and from having fits.  Because I use heating pads and ice packs at home, I always travel with portable heating wraps and ice packs.  I am less apt to feel depressed or discouraged with this way of thinking as well.  I shouldn’t feel selfish when planning for and around my conditions, but I do because I think only of my needs.

Thinking of my conditions as additional guests make it easier as I always want those accompanying me to have a good time.  When thinking of myself, I tend to gloss over what I can or can’t do or think that I will magically be able to push past them.  Yet when I think of them as passengers, I can clearly see their (really my) needs.

Do you have any other realistic expectations to add to this list?  I’d love to hear them!