Travel has always been a passion for my husband and me. We love to travel all over the world. When the doctor diagnosed me with Chiari Malformation and then the common comorbidities that go along with it (EDS, POTS, IH, MCAD, etc.), I was afraid that I would not be able to continue to travel.
My husband and I go somewhere outside of the United States every year in May to celebrate our Anniversary. I had decompression surgery for Chiari in February 2012. We had already made arrangements to travel to Belize in May of that year and I was not about to cancel. I wasn’t sure what to expect but I knew that I had to do this.
I packed up all of my medications and usual belongings for a trip to the tropics and we left for our journey. The airplane ride was a little rough, with the changes in cabin pressure and altitude feeling like my head was going to explode. Once we arrived at the resort, I needed to rest. I took a pain pill and asked my husband to go to dinner with our friends and let me rest. It was a tiring week but I survived and I am so glad that I got that first trip under my belt.
Since Belize that year, my husband and I have traveled as far as Bali and am so happy that we can continue. Many people ask me why and how I continue to travel. I tell them, “I can pass out at home or pass out at a tropical location. I choose the second.” I do have many seizures and have to rest a lot while I travel but I have found some things that work.
Compression stockings. These help me so much on the airplane ride. Make sure that you get the correct ones for you. For some people, the knee-hi ones are not good and make you worse. Please check with your doctor before purchasing any.
Gatorade packets and an empty water bottle. Since you are not allowed to bring liquids with you and many places we travel do not have Gatorade or Powerade, this has been a life-saver for me. Once I have gone through security, I fill up my water bottle with water and one of the packets. You can usually buy Gatorade in gift shops at the airport but it is very expensive. Also, once you are at your location, you will have your supply.
Wheelchair. If I do not take my personal wheelchair with me, I always make sure that one is available at the gate when I arrive. Also, I try to look at a map of the airport if I am unfamiliar with it to see the distance I will need to walk.
Cool Towel . I always have a cool towel in my purse. You never know when your body temperature is going to go crazy. These are available at most sporting good stores.
Travel Insurance. Always purchase travel insurance so that you can get care when you are abroad or get back home if there is an emergency. It is entirely worth the money.
Research. Please research the regulations for medication of the country you are visiting. Some countries have strict guidelines regarding narcotics and other medication. Many of us are on Adderall, pain medication and other medication that might fall under restrictions. Normally, you can get a letter from your doctor explaining the medication and why you are taking it.
Notify the Flight Attendant of any medical issues you have. I had a seizure on one flight and the pilot was going to do an emergency landing to get me medical help. Once my husband explained to the Flight Attendant what was happening, everything was ok.
Be prepared for questions. When I traveled through Doha, Qatar, I had my hard neck brace on and security questioned me. They asked me if it was a necklace and I had to try to explain that I needed it to stabilize my head and neck. He looked at me weird but finally let me through.
These are only a few suggestions of issues that I have faced while traveling. I know that I will usually have something happen during travel; however, it is worth all of the fun I will have during the remaining hours.
Please do not let your illness keep you from following your passion. Yes, it might be harder than before but you have to keep going forward with your life.