Whether you have a chronic illness or not, life requires planning. Without it all we are doing is sitting on our thumbs waiting for life to happen. While spontaneity can be fun, it won’t help you succeed. Speaking of succeeding, did you know that planning can help you succeed in your personal and professional life, even if you have a chronic illness like fibromyalgia or psoriatic arthritis. To help you succeed, here are two very important things you must know about planning:
This is a biggie for those of us diagnosed with a chronic disease. Autoimmune diseases and other unpredictable illnesses are monsters that have the capability of turning the most reliable person into a complete flake. Before becoming chronically ill, I rarely cancelled anything I committed to. That all changed after my third chronic diagnosis. One of the reasons I became the cancellation queen was because I was filling my calendar the way I did before becoming sick. Another reasons is that I just said yes to everything without considering if I would have enough time or energy to actually follow through.
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I resolved this issue with careful planning. It took a few years of trial and error, mainly because I still had to come to terms with the fact that living with multiple chronic illnesses would never be the same as the life I had before, but I finally found my groove. What I mean by that is by following the advice in my eBook Make Pain Your Bitch: How to Dominate Your Chronic Life, I was able to plan with my symptoms and pain in mind. For example, after living with my illnesses for as long as I had, I knew approximately how much time I needed to recover after a big outing. I also knew that planning anything to close to that event would not end well. So to ensure that I could attend, well as much as I could as we all know that most autoimmune diseases, chronic illnesses, and cancers can have a mind of their own, I blocked out a few days (more if I wasn’t feeling as well as I’d prefer) before the event and then anywhere from 2-7 days following the event to recover. By doing this, I was able to plan smarter and could even explain to someone why I was declining their invite.
Yep, that’s right, our health status and pain levels aren’t the only things that can change without warning, our plans can too. With that in mind, I always makes plans that include backup plans! I began this practice after I started blocking out dates on my calendar, because I became frustrated that my plans went up in smoke after I took the time to rest beforehand. Sometimes my backup plans are actual plans. For example, if dinner plans with friends didn’t pan out, I have plans to still go out either by myself, with my husband or children, or someone from the original plans if anyone is still available.
By allowing enough time to prepare my body for an outing and to recover from one, I also free myself to be a bit more flexible. If something comes up I still have room in my schedule to shift the day that I was going to go out forward or backwards a day or two.
The best part of seeing my schedule on paper is that afterwards I am able to see how much I was able to do in the past month. This helps with future planning. Then of course there is that exciting moment when you discover that all the time you spent planning and listening to your body results in being able to do more than you expected!
I may be able to escape my everyday life by going on vacation, but there is no escaping my chronic conditions. Other than making sure I packed my medication, I rarely gave my conditions any consideration or thought. This led to some disastrous getaways. Thankfully I began viewing my illnesses differently a few years ago and it has made for some wonderfully memorable trips.
Finally accepting that I couldn’t escape my illnesses, I began thinking of them as extra passengers. I even named them: Fibro Fannie, Polly PsA, and Agatha Adhesion. This trio is with me wherever I go. It is much like traveling with my children. They get antsy, irritable, and have temper tantrums. Like when my children were young it is imperative that I bring along items to comfort and calm them.
*This post contains affiliate links. Meaning that at no additional cost to you, I earn a commission when a purchase is made from my links. The proceeds offset the expense of operating this blog and funds the giveaways in my Facebook groups. This post was originally written in 2016 and parts have been updated in 2018.
Imagine taking a road trip with your little ones and bringing nothing with you to entertain them or to comfort them. In addition to bringing their favorite videos, coloring books, blankets, pillows, and/or stuffed animals I also brought items that they would need for accidents. I kept extra clothing and a first aid kit in an easy to access bag. Thankfully I rarely needed to open that bag, but I was prepared just in case. When packing for a trip with my temperamental trio I go beyond the bare necessities of caring for them. Besides my medication I bring items that provide my body comfort. Having things like my heating pad or icepack in my hotel room makes getting through a surprise flare a better experience than if I hadn’t brought them. Being prepared for the worst has also made it possible to get through my flare faster than if I or my human traveling companions had to find a store to purchase what I needed after the fact.
Before you begin packing, think of all the items you use to comfort yourself throughout a flare and write them down. Next go through that list and check the items that you will be able to bring along. Even though you may not be able to bring everything, you can see if those items or services you use are available at your vacation destination. For example, you can’t bring along your masseuse, but you can book your stay at a hotel/resort that offers massages. My husband teases me about the amount of luggage I bring on our trips, but he understands the importance of packing for my conditions. Sometimes I never have to use any of the extra items packed and other times I have used them all.
Instead of only focusing on all the fun things you want to do on your next getaway, take time to think of the worst tantrums that your invisible passengers could throw and plan accordingly.
Does the thought of taking a summer vacation get you excited or does it send chills down your spine? I loved traveling before I became chronically ill. In addition to yearly Disneyland vacations, I loved exploring new areas in other states or within the ones that I lived in. Weekend road trips without a destination were my favorites.
Soon after chronic pain became a part of my daily life I began to loathe traveling. It wasn’t that I didn’t want to go exploring, instead it became too painful. Not only did my excursions increase my pain while away, it would take weeks and sometimes months to recover from them once I returned home. Not wanting to spend most of my time recovering I opted to stop traveling.
The reason traveling was such a horrible experience for my during those early years of my chronic life was because I had attempted to travel just like I did before my illnesses. Do you enjoy traveling? Why or why not? Have you changed the way you plan, prepare, and go forth with your getaways? By changing how I plan, prepare, and execute my trips I have fallen back in love with traveling.
What am I doing differently? The most important thing I do is I plan with my illnesses in mind; I like to think of them as my invisible traveling buddies. In my post Packing for your Invisible Traveling Companions I share how I pack for each condition and how I prepare to keep them as happy as possible while away from home. I also adjusted my expectations. My posts Unrealistic Expectations and Realistic Expectations both offer advice on making vacation choices that work best for my body and its limitations. Planning for and accepting that I had to pad my schedule with Vacation Downtime is another reason my traveling experiences have improved. For even more tips be sure to check out The Disabled Diva’s Top Ten Travel Tips and listen in as Shane and I discuss these topics and more in episode #3 Vacationing with a Chronic Illness on my podcast Dish’n with The Disabled Diva. And last but not least find out why I recommend Disneyland over Disney World for people with chronic conditions and where service animals are not permitted in each park.
No matter what your illness or where you are planning to go, the most important thing you can do to protect yourself is to have your most important medical information on hand. I am giving away a downloadable Emergency Medical Information Wallet Card. By keeping this card near your identification your traveling mates and/or emergency personnel will find your information quickly. With a quick glance a paramedic or doctor will know what medications I am allergic to, what medications I am currently taking, my surgical history, blood type, and more. Don’t expect your loved ones or traveling mates to remember all of your medical information during a crisis, help them out by downloading your free copy today!
Where will you go this summer? Planning a Disneyland vacation? If so be sure to check out my Disneyland Accessible Guide and you too will have a magical experience!
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One of the reasons I have been able to increase the amount of commitments I have made is that I schedule them with each of my conditions in mind. For every date I scribble into my planner I pad it by blocking out a few days before and after. Commitments that are going to require an extraordinary amount of physical/mental commitment are granted larger amounts of time. Following this one simple rule has minimized how often I cancel, because it gives my body time to rest up beforehand as well as time to recover. I mark these dates on my calendar so with a quick glance I know not to make plans on those days. These blocked out dates don’t always mean that I won’t do anything on them; if I am feeling up to it I may go out to dinner or a movie. Those outings are usually last minute invites that sometimes work out. Blocking out dates keeps me from planning too many physically taxing activities too close together.
I had to get over my need to please everyone and accepting every invite that came my way. A choice had to be made, either I stopped making plans with everyone or I needed to limit the amount I made. The degree of minimization depends on my physical status. When my psoriatic arthritis is remission or when my endometriosis is behaving I allow myself to plan more than when all of my conditions have declared war. Be warned that friends and family may not understand this in the beginning. Many of mine felt that I was choosing someone else over them or that I was distancing myself from them. This of course was not true and after a while they could see how this also benefitted them as I was able to follow through on what I had planned.
Decluttering your calendar won’t guarantee that you will be able to fulfill every date you make, because let’s face it our illnesses have a mind and secret schedule of their own. However, I have found the more I cater to them by planning with them in mind the more they allow me to go out and play. You can’t please everyone and your body at the same time and since we have to live in our bodies doesn’t it make sense that they should come first? I doubt my loved ones would want me to end up bed ridden for months or in the hospital just because I didn’t want to disappoint them. Are you over committing? Start documenting how long it takes your body to recover from an outing and begin using that as a guide if you are new to padding your calendar.
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Living with multiple chronic conditions has changed many things in my life, including what I expect from a vacation. Psoriatic arthritis, fibromyalgia, and endometriosis often create havoc before, during, and after each trip. I may not be able to escape my conditions for a week, but I can still have a fabulous getaway by having realistic expectations. Here are five unrealistic vacation expectations and how I turned them around.
I struggle to leave the house more than a few days in a row. When I am able to those outings are usually short in duration. I am also cautious about how much I am pushing myself physically in order to lessen the amount of recovery time. Expecting my body to do something on vacation that it can’t do at home is ridiculous. Accepting that I may end up spending one or all of my vacation in bed makes getting out of the hotel room that much more gratifying.
Unless the others in my party want to schedule a day of rest, I plan activities for each day of our trip. I don’t do this expecting to be able to partake in them myself, instead I do it for them. By filling our calendar I ensure that they are going to experience new and exciting things and I increase my odds of being able to join them for at least one. No matter how little I am able to do, the memories made from what I could do comforts me when I have to stay behind.
Not all vacation destinations are a realistic option. Instead of choosing a destination based from an emotional desire, I try to choose climates that won’t aggravate my conditions. For example: Choosing to go somewhere that has extreme heat and humidity guarantees that I will be miserable. The chance of my doing anything with my traveling companions if I book a vacation where my pain level will be worse than it is at home is next to none. A trip to Florida in the summer would be disastrous. However, I don’t have to let that keep me from Disney World, instead I will plan my visit during a cooler season.
I used to assume that my pre-vacation pain level is what I would have to deal with while away. Having a flare-up wasn’t something that I planned for. The reality is, especially with chronic illnesses, is that our conditions can turn on us for no reason. In the past my husband and I had to scramble to find items when a flare hit. Once I began packing with my worst physical possibilities in mind I was able to have a better vacation experience. Being prepared reduces my stress. I may or may not need everything I bring, but when I do need it I don’t have suffer more than necessary.
When everything you do is painful, it is unrealistic to think you can go on vacation and return without an elevated pain level. Instead of being able to jump back into my daily life I need to recover from my trip. This used to frustrate and depress me. So much so that I found any reason possible to not travel. By changing my post vacation expectations I was finally able to look forward getting away. Expecting my pain level to be off the chart, I schedule one or two weeks off after returning home.
Are you considering or planning a trip to Disneyland? Be sure to read The Disabled Diva’s Unofficial Accessible Vacation Guide before booking your vacation. This guide has all the information you will need no matter what your disability. Don’t waste time trying to figure out Disneyland’s accessible system while in the park download your FREE copy today and enter the park ready to experience the magic that is Disney.
Related Post: 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 who are newly diagnosed or for 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.
When making plans it is important to keep our conditions and limitations in mind at all times. 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:
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 feel that I am only thinking of my needs. Thinking of my conditions as additional guests makes 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!
Are you considering or planning a trip to Disneyland? Be sure to read The Disabled Diva’s Unofficial Accessible Vacation Guide before booking your vacation. This guide has all the information you will need no matter what your disability. Don’t waste time trying to figure out Disneyland’s accessible system while in the park download your copy today and enter the park ready to experience the magic that is Disney.
Wishing you a day filled with gentle hugs and many reasons to smile!
Related post: Unrealistic Vacation Expectations