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travel tips for chronic illness

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How To Be Courteous To Guests With Wheelchairs at Disney

Disney With Disability

Our visit to Walt Disney World in Orlando, FL in December was our second trip to Disney with our daughter and my family. It was also the second trip that I would be using a wheelchair to tour the parks. On our first visit, I was four weeks post-op after a laparatomy threw a wrench in our plans. My entire family was going on the trip so we couldn’t reschedule the trip but using a wheelchair allowed me to make the best of our trip and it was definitely a great decision! This visit I wasn’t post-op but because of the state of my health and pain issues, I knew that using a wheelchair again would be the best way to go. It allowed me to save the energy I would have used walking so that I could actually enjoy the time and experiences with my family.

I did learn some things though about society that reinforced my belief that there should be a mandatory class on manners before being released into the world.

These are three things that I wish people understood in order to be courteous to guests with wheelchairs at Disney (or any other public place for that matter):

1. Understand the importance of personal space.

One of my favorite experiences from our week at Disney was seeing the Osbourne Family Spectacle of Dancing Lights at Hollywood Studios. It was breathtakingly beautiful but it was also an absolute madhouse and packed with people. I might as well of had people riding on my lap it was that crowded. One thing I don’t think people don’t understand is when you are in a wheelchair, you are sitting at half the height of the crowd. I wasn’t shoulder to shoulder with a couple hundred of your not-s0-closest friends, but I was waist high with a couple hundred not-so-closest friends. If you are the slightest bit claustrophobic, it increases ten-fold. By about halfway through the lights, I became so panicked that I had to find a way out as quickly as possible. We all value personal space but when your perspective is much lower when seated in a wheelchair, personal space becomes much more important.

2. Don’t cut someone off. 

I know everyone wants to catch the perfect picture of Cinderella’s Castle as you are walking down Main Street at the Magic Kingdom. I totally get it but don’t stop short in front of someone in a wheelchair (or pushing a stroller or anyone for that matter) and get miffed when you get bumped. Its rude and stupid. Pay attention to the people around you. If you see a great shot, need to look at the map, or need to send a text, step to the side.

3. Don’t judge.

Not all illnesses are visible so just because you don’t think someone looks sick, it doesn’t mean that they aren’t. Disney offers a Disability Access Service card that works with guests that are not able to utilize the conventional queue for attractions. At this time, while I utilize a wheelchair to get around the parks, I do not feel like I need additional assistance so I park my chair and wait in line for attractions like other guests (we make it a point to travel in the off-season to avoid large crowds and wait times). While I feel like I am making the best personal and ethical decision at this point in my life, it has opened up the opportunity for judgement when people see me get out of my chair. Just because I can walk doesn’t mean I can walk the whole park. Just because I’m young (and have purple hair), it doesn’t mean that I am faking my illness. I may need a DAS card in the future but for now I would rather give that spot to someone else who needs it (how I feel about those who abuse the system is a totally different argument for a different day). Disabling illnesses affect people of all ages and backgrounds and are not always visible. In the US, approximately 96% of individuals living with a chronic illness have an illness that is invisible (source). Living with an illness is difficult enough without having to worry about judgmental stares from strangers.

Doing Disney With A Disability

With all my heart I believe that Disney is a magical place and plan to continue to share the magic with my family for many years to come. I just hope that one day the magic helps all of us overcome judgement, see everyone as a beautiful and wonderful creation, and treat everyone with all the respect and compassion they deserve.

Three quick tips if you will be renting a wheelchair at Disney:

1) Purchasing a multi-day (length of stay) rental pass saves money. A single day pass is $12 a day but a multi-day pass is $10 a day so I was able to get  my 6 day rental pass for the price of 5! Every little bit helps! Plus I didn’t have to wait in line the rest of the week and could just show my receipt to the cast member to receive my chair.

2) If you are going to be visiting the parks during a peak season, especially if you are using an EVC, you may want to consider renting from an outside company as park rentals can sell out quickly as they are rented on a first-come, first-serve basis. During our visit in December, it was a crowd level 3-4 (on a scale of 10) and there were days that the EVCs were sold out.

3)Bring a wheelchair pad or something to sit on! Those babies have no padding and can put a hurtin’ on your bootie by the end of the day!

Do you have a tip for visiting Disney (or any other theme park) with chronic illness or is there something that you wish others knew?

bloggingchronic illness

Tips For Attending A Conference When You Have A Chronic Illness

As you all know, I recently returned from my first trip to Type A Conference in the beautiful city of Atlanta! I wrote about my first trip to a conference when I shared tips on surviving a blog conference when you are an introvert but this was my first multi-day conference and it was a lot larger than my previous experience. Type A is bigger than Bloggy Bootcamp (my first conference experience) but still significantly smaller than BlogHer. This experience definitely proved my little introverted self would absolutely NEVER make it at BlogHer. I think the last BH conference surpassed 3000 attendees! Yikes! I only had to hide in the bathroom and cry once at Type A 🙂

While the trip definitely exhausted me and it took me nearly a week to recover, I still think that the trip was very worthwhile and I don’t think having a chronic illness can keep you from having a blast. You just need to modify your plans to accommodate your needs. Here are some things that I recommend paying attention to when you consider attending a blog conference (or any time of conference really):

1- Travel. I lucked out that Type A was only 3 hours away from home. There were conference attendants from all over the country who had a much heftier travel agenda than I had so for that I am thankful! If you are going to be traveling from a significant distance, be sure to add some buffer time in your schedule. Consider traveling in a day early and/or staying an extra day to allow yourself time to rest before the festivities.Type A kicked off Friday morning but I arrived in Atlanta around dinner time on Thursday so I was able to catch a quick dinner and spend the evening resting so I would be ready to go the next morning.Not only does driving wear me out but driving in Atlanta drives me absolutely batty which makes me more anxious which makes me stress which makes me more likely to flare. Because I knew this, I hooked up with some bloggers from the area to carpool down. I was glad to help pay gas and parking if it meant I didn’t have to drive! By the time time Sunday rolled around, I was so tired that I was twice as glad that I was not the one driving. Had I been driving, I would have definitely added in a rest day before traveling for safety.

2- Its ok to miss sessions and events. I know you want to soak in as much knowledge, networking, and good times as possible when you attend a conference but it is ok to take breaks. Your body needs breaks. Conference rooms chairs are not the most comfortable and walking back and forth for sessions and around the expo area can take a toll on your body and the last thing you want to do is push yourself too far and land in a strange ER. Conferences typically publish the schedule well in advance so pick out the sessions and events that are the most important to you and build your personal schedule around that. Allow yourself to be flexible and most importantly, don’t feel bad about making your health a priority. Would I have loved to been more involved in the night events and late night parties? Absolutely but I would rather leave early to get some rest in order to be able to fully enjoy the sessions and events I did go to. It is really important to listen to your body and go with the flow.

3- Dress comfortably. These days I am hardly out of yoga pants so I was really looking forward to wearing some real clothes and feeling cute and put together but I still had to take into consideration what I would also feel comfortable in. I have two large incisions that can make sitting for extended periods uncomfortable with certain waistbands so I had to take that into consideration when picking out my outfits. There would also be some walking around the expo area and between sessions that make comfortable shoes a must. Thankfully everything for Type A was in the same general area within the hotel but I know some conferences are more spread out. My go-to outfits for this conference where dark wash jeans, blazers, and fun accessories. I have decided that blazers are my secret weapon for feeling confident and put together!

4- Make sure you have the medications you need. While most hotels have a gift shop or convenience area where you can purchase Pepto and Tylenol, I am a strong believer in being a spoonie girl scout and being prepared. I also recommend traveling with your prescription medications in their original bottles. Heaven forbid something should happen but in case of an emergency, a doctor or responder would be able to know the medications you are taking versus having a pill case with a bigger variety than a bag of Skittles. You don’t necessarily need to bring a full bottle but I would bring enough for the days of your trip plus one as a spare. If you require prescription pain medications, I recommend traveling with a mini pill safe or keeping them on you just as a precaution. I also travel with a variety of OTC medicines as well as a precaution. I felt like a walking pharmacy as I had everything from Excedrin to Dramamine. I would also recommend wearing a medical alert (if needed) and installing an ICE app on your phone with your pertinent medical information in case of emergency (especially if you are not traveling with someone who knows your history).

5- Be yourself and HAVE FUN! I always worry about being known as the “sick blogger.” Many within the Type A community know my story, especially when I had to back out of last year’s conference at the last minute because of my bowel obstruction surgery. I was met with “How are you feeling?” on several occassions (versus the traditional “How are you?”) and at first I felt a little self-concious because I didn’t want to be known as that girl but I can to the realization that 1- while I am not defined by my illness, it is a part of who I am and shaped me into the strong woman that I am and given me the purpose for why I attend blogging events, and 2- these people are completely genuine, care about me as a person, and Type A really is a family of bloggers. Hopefully by knowing me and my story, they will be more aware of chronic illnesses and will be able to better support a friend or loved one who may be impacted by illness. I have to admit that I also loved being the blogger with purple hair! A tip if you have purple hair (or another unnatural hair color) – bring your own pillowcase to avoid color rub on the hotel sheets! I would hate to know what the Westin would have charged me for a pillowcase considering a bottle of water was $3!

Hopefully these tips will help if you decide to attend a blog conference (or any kind of conference) someday! If you have attended a similar event with chronic illness, what tips would you add to the list?

p.s. – if you notice over there on the sidebar, I have opened up A New Kind of Normal store on Zazzle! I am a very visual person and love having visual reminders to stay strong and keep up the hope especially when I am having a hard day! Let me know what you think!

chronic illnessfamilytravel

Celebrating (& Surviving) at the NC Zoo

Abby loves animals. I mean LOVES. Names of animals came right behind “mama” and “dada” as her first words. We have a baby animal book that is read a minimum of 3 times a day and a zoo puzzle that accompanies her pretty much wherever she goes so when we were starting to think of ideas of what to do for her birthday, a trip to the zoo was a no-brainer.

We are lucky to have several small zoos around us that we have been to before (and will likely visit again this summer) but we wanted to do something new and bigger for her birthday so we planned a trip to the NC Zoo. My family drove to VA and luckily John’s family lives really close so we met up and planned for a picnic and exploring. Unfortunately I didn’t factor my spoons into the equation.

Two things we ran into – 1) I think everyone in the state had the same plans for Saturday so the place was absolutely packed. We stood in line close to an hour just to get tickets. Thankfully the place is huge. 2) The place is huge. I mean HUGE. I knew it was big. I looked at the map and talked with some friends who had previously visited but it wasn’t until we pulled in that I actually got it. The Zoo is divided into 2 sections: Africa and North America. The zoo recommends planning a minimum of 2 hours to see Africa as it included 2 miles of trails. North America includes 3 miles of trails and takes a minimum of 3 hours to see everything. If you do the math you can see that to see the entire zoo would include 5 miles of trails and that is not including the distance you may have to walk from parking to the front gate (we ended up in overflow parking which was way out in the middle of nowhere).

So here are my tips for planning and surviving a trip to the NC Zoo as a spoonie as well as pictures from our fun day:

1) Plan to go on a weekday (think Tuesday-Thursday) to avoid crowds. I would also plan to visit in the Spring or Fall versus Summer to avoid the heat.

2) Divide the Zoo into 2 trips – Africa one day and North America the next (we plan on hitting up North America this fall!)

3) Plan for frequent rest breaks. The exhibits are spread out and there are a lot of hills but there are plenty of benches for rest stops between them. You may want to take advantage of the wheelchair rental (both manual and motorized) as well.

4) Pack snacks and drinks! There are gift shops but they are at the very front of the park or in the dead center. If you are prone to drops in blood sugar, you will definitely want to make sure you have something on hand. You cannot take a large cooler into the park but you can carry food and drink in a backpack.

5) Have fun! Realize that you may not see it all and that is ok! Had I had it in my head that we had to see everything before we left, I would have been very disappointed but thankfully I was given a heads up so we were sure to enjoy everything that we were able to get to. Make the trip as enjoyable as possible by taking it slow and taking it all in!

Do you have any summer travel tips you would like to share?

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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