Whenever the countdown began for the end of 2012 and the beginning of 2013, I experienced a whole range of emotions. Part of me has always been a bit weary of new beginnings or new chapters in my life because the unknown of what lies ahead scares me. However my desire for new experiences, changes, and opportunities for this year is much greater, and overwhelms me more than the fears that I may have.
2013 will be a year of opportunity and challenges —challenges that I’m determined to tackle and overcome.
Besides any personal challenges, life with Dysautonomia is a challenge within itself. I believe we all must rise above what our symptoms and disabilities allows us to do. Due to those disabilities and symptoms, one might think that they can never do certain things or experience a variety of fun life events like a “healthy” person could.
I’ve heard many different worries and doubts coming from other Dysautonomia diagnosed teens, so there is a wide range of those worries and doubts. It can range from whether or not they can go to college, travel and explore, be able to have a career, be able to drive, do a certain hobby, or even something as simple as walk across the room. I personally have had many of these worries, but it is possible to live a fulfilling life even with Dysautonomia – we just have to get around to things differently.
A Dream Realized Despite Dysautonomia: I surprised myself just recently, and have actually succeeded getting through something that could be quite challenging for anyone with Dysautonomia. Over the Christmas holidays, my mom packed my siblings and I up and we traveled all the way to Italy where my dad has been sent for his job for a year.
My family had their concerns of course, and wasn’t sure how my symptoms would react to the major traveling because Italy is not the most handicap-friendly place to go. It is close to impossible to roll a wheel chair around. (Considering Italy’s long and beautiful history, I was prepared for this dilemma.) I’m in my wheel chair 80% of the time, and can only walk for a set number of minutes before I need to sit down or I will obviously, pass out. So this amazing opportunity to go to Italy was wrapped up and combined with a major challenge: one where I was willing to accept (who wouldn’t? I mean it’s ITALY of all places!) However, I was also dreading the walking and being on my feet – worried I wouldn’t make it. Thankfully my cardiologist approved my travel and after being set with all of the medications that will help keep me going – I was ready to give it a try.
After meeting up with my dad (we were so excited to see him!) and staying a few days at his apartment to get our bearings, we hopped on a train to Florence. It turned out to be a great time and was definitely a beautiful and incredible city. The highlights of the trip there was the stunningly gorgeous The Duomo, the Statue of David, and a place called the Palazzo Pitti. As great of a time I was having, I was….suffering. The first day there my legs were screaming at me in pain and protest due to all of the walking and work I was making them do…even despite sitting down frequently and going slow. I probably looked like a crazy girl going through the streets staring very intently on my legs and the ground thinking ” left foot, right foot, left foot, right foot.”
That night I immediately fell asleep as soon as I hit the pillow, and when I woke up….you can just say I was in absolute misery. I could barely move my legs, they were in their temporary paralysis state that can sometimes occur to me time to time. My body felt like one giant tangled knot and I had a major migraine going on. The first big day truly did a number on my body, and that was when the familiar feeling of helplessness crept in and tears started to form. I was in so much pain, beyond exhausted and incredibly frustrated. I thought if this was how it is the first day…how am I going to make it the rest of the vacation?
My parents were very supportive however, and slowed the pace the next day even more and waited until my legs started working again. I still wasn’t in good shape but I took some pain killers, got ready and we all headed out. I had to go extremely slow because every time I walked too fast I all of a sudden became the image of a baby giraffe taking its first steps….so my mom told me (thanks ma…) but as the day went on the pain killers took the edge off and I was too occupied by the beauty of the city to notice the throbbing throughout my body much.
The Rest and Roll chair from QVC my mom bought was also a lifesaver. It was a lightweight foldable chair with wheels, and every time I needed to stop and catch my breath all we had to do was go off to the side and unfold it. Very sturdy and took a beating with all of our traveling. Without it, I don’t think I would have made it all the way through the trip.
The rest of the time in Florence was still challenging and there were times where I thought I would lose my delicately held patience with my body. My head was spinning due to a combination of being exhausted and sick, but I was determined and I didn’t give up….and I’m happy I didn’t. I have so many great memories from our time there from the beautiful architecture and historic wonders, the kind people we met, the food, my siblings and their silly tactics around the city, and even a particular day where a random cute Italian guy proposed to me after learning I was American. (My first proposal! Ha!) I was blushing a cherry red as my mom and I laughed all the way down the street from him yelling “Marriage me Bella American!” over and over again.
There came a point where I had to take a day off and rest at the hotel which my mom reassured me was okay and necessary after I expressed frustration. (I had to miss the Leaning Tower of Pisa…boo!) She was correct, and that day helped me make it through the final days in Florence. If you do go on any length of a vacation, it is truly beneficial that you get the rest that you need to make it through the trip. That includes a set time during the day where you take a nap back at the hotel, go chill in a cafe for awhile, or even do like I did and just take a day off to SLEEP! You definitely don’t want to overdo it, your Dysautonomia symptoms will start to overwhelm you more than it should. Those little breaks were always heaven to me.
After our time in Florence we went back to our home base in a small little charming town on the coast where my dad stays to rest and recharge for our next adventure – Rome. I can’t even begin to explain how excited I was for Rome, it was seriously a dream of mine to go! When we arrived I was like a kid in a candy shop, I was just happy to even get to set foot there.
As far as pain and dysautonomia symptoms go while in Rome, I was still having daily struggles with dizziness, exhaustion, legs not working well and my eating was starting to get more difficult (I love to eat! Swallowing and putting any food on my stomach was not working well.) I was constantly having headaches and migraines, my fibromyalgia flared up and I had to concentrate on putting one foot in front of the other, but the good news was my walking endurance was starting to improve.
On the first day we went to go tour the Vatican and Sistine Chapel which was probably the most beautiful place I have ever seen. In that particular place and others included, the people at the ticket booth or security eyed the rolling chair and told us if we wanted entry we had to leave it behind. (They thought it was just a rolling bag) After some explaining of my situation though, and how it was important for me to sit down frequently, they let us take it. So always ask and explain if you are in a similar situation.
The only real issue I had at the Vatican was close calls of running into a wall like a lovestruck character from Shakespeare from staring at the stunning statues, paintings, and decor without paying attention where I was going. My mom had to force me to sit on occasion because all I wanted to do was roam aimlessly and take in all of the intricate details around me – the whole building was an incredible masterpiece.
With the remainder of the first day we visited the Pantheon, did a little shopping, and treated ourselves with gelato. Towards the end of the day my body was getting more tense and knotted from all of the walking and I was dealing with some bad vertigo/dizziness, so when I climbed into bed that night I immediately fell right asleep.
Bright and early the next morning we got on the subway to head for the Colosseum. As soon as we stepped out of the subway station, the angels of heaven began to sing as we came face to face with the Colosseum. I’m talking it was smack dab right in front of the station, it was an amazing sight to behold. We joined a tour group and explored the inside and got to hear additional information as the tour guide went on about the history. It took me awhile to wrap my head around the whole situation, it was hard for me to believe I was in a place where I always dreamed of going.
As the day went on, we walked a distance to get to the number one thing I wanted to see during the whole trip which was the Trevi fountain. It was amazing and breathtaking when we arrived, just like many of the other places we had been to. After taking a thousand photos, we made our way out – it was extremely packed as everyone tried to get to the very edge of the fountain.
We grabbed gelato afterwards and while eating my family was starting to talk crazy and was wanting to go to the Spanish Steps. Me? I was like eh, no thanks. Stairs and I are enemies. Having to go up and down the stairs back at home is enough for me.
The Point of No Return: After my family took some pictures of the famous steps they decided they’ve seen enough and we started to try and make our way out of the main square. Just one problem, there was no way out to the masses of people blocking the way and there was only one way out.
Up the argh – grrrrr – yikes Spanish steps.
I think I shouted out something close to a strangled Scottish battle cry of frustration as we all started to go up the steps and weasel around the people sitting on them. Here it was, probably the most challenging part of my whole trip and it was torture for me trying to get to the top. Despite the freezing weather I was sweating and my heart was in a sprint. I had to stop every flight to catch my breath and my mom was trying to help me keep a positive can-do outlook, while quietly laughing at the crazy look I had in my eye and the glares I was shooting at each step. Once I did reach the very top, I felt a combination of happiness I made it and that feeling I get right before I pass out and face plant the ground. I was proud of myself plus the view from the very top was rewarding – you can see the incredible city sprawled out all around you.
I made it up the Spanish steps, take that Dysautonomia!
More on my trip next time, but one thing I want you to remember. Do not let Dysautonomia completely rule your life. Yes, we have to do things differently. And I know we all can’t go to really cool places like Italy (time for me to get back to saving for another trip!) However, there are always neat places to discover around your hometown. Look at your hometown with the eyes of a tourist. I bet there are many tours and history you have not personally done. Get out and explore! Don’t let Dysautonomia take your adventurous side away! Besides, we know sleep is just right around the corner
Have any questions or comments for me? Would love to hear from you! Contact me through our Mik’s Hidden Hearts Alliance website.