Tell us about yourself and some history of your condition.
Though I was born in Etobicoke, Ontario, Canada, I am a county girl who grew up in Prince Edward County and the Belleville area (part of the Quinte region) from the age of ten. I still live in the area, in Belleville. The County, as locals call it, is a fantastic place with an eclectic array of things to see and do. Summers always include camping, beach days at Sandbanks, weekend trips to the local drive-in, etc.
I am the oldest child in a family of five, with a brother, Jon, and sister, Nikki. Anyone that knows me knows that I am all about family, I love being an aunt to my five nieces and nephews, and I’m determined to still have a semblance of independence, a part in society and to have personal joy. When I am not working, I am still busy. I love to knit, crochet – I love to make amigurumi toys – read and learn new things.
On December 15, 1999, along with my brother’s pregnant girlfriend Kim and my boyfriend Ryan, I had a car accident. As the driver, I hit a patch of black ice while driving around a bend in the road. Thankfully, everyone was alright, with only minor injuries. Unfortunately, I was unconscious during the accident, most likely caused when I hit my head on the space by the window. Still, 23 years later, we are not fully sure if this was the start (cause) of my life with dysautonomia or if it was a byproduct of it having already started (did I faint before spinning out of control?). Needless to say, I no longer drive – I’m medically not allowed as I continue to faint often.
By June 2000, I was battling extreme fatigue, body pain, weakness and more. Then I began fainting. Within weeks I was fainting numerous times a week. By the fall, I was fainting nearly twelve times a day. The fatigue never let up. The pain grew – I was diagnosed with fibromyalgia a couple years later. The weakness was like moving through a pool of mud, with my limbs heavy and weak. In late fall of 2000, my hospital stays and testing began. Two and a half years later, I was officially diagnosed with what the doctor referred to as “a rare form of vasovagal syncope.” This rare form is referred to as both vasovagal syncope and neurocardiogenic syncope (NCS), a form of dysautonomia. Previously, in 2018, I had been told I had postural orthostatic tachycardia syndrome (POTS). I am on medication daily and, along with making lifestyle changes, it has helped lessen my pre-syncope symptoms as well as the frequency of fainting spells.
How has dysautonomia affected your traveling experiences? What unique challenges does it present?
To be honest, traveling, though I love it, is difficult. I do not travel alone. As physical activity is a trigger that causes fainting and other pre-syncope symptoms, traveling can also be scary, for both myself and for those around me. My mom, Marilyn, is also my best friend so we always travel together and this works well for us. She helps me physically be able to travel – understanding how often I need to sit, how slow I can walk, etc. She helps to make sure I’m safe when unconscious and that those around us don’t panic. Unless I hurt myself when fainting, I don’t need an ambulance or trip to the hospital – I would end up there way too often for my liking.
When traveling, it’s important that I always allow extra time. Rushing tends to make my symptoms stronger, thus ends up being counterproductive. While I am usually fine without a walking device for short periods, longer walks such as through an airport, walking the block, or even grocery shopping, requires my walker or other device that can hold me up (a shopping cart works too).
On family trips, I often feel guilty as it’s my family that needs to carry luggage, set up camp sites, etc. I usually need to sit. Instead, I help watch my nieces and nephews.
How do you manage your symptoms during long flights or car rides? What strategies help?
Thankfully, I am usually okay when sitting – though it’s heavily reliant upon factors such as the weather, if I had a good night’s sleep, if I am ill at all – as these can lower my blood pressure. I absolutely love flying, once we’ve boarded the plane. At airports, upon handing over my walker to be loaded on the plane, I get wheeled to and from each gate with help from the airport’s Accessibility Services and Facilities. As a person in a wheelchair, I am one of the first to load onto the plane. I always let one of the flight attendants know about my conditions as half the time I end up fainting either during take-off or landing, or both.
When traveling, either by plane or by car, I always carry the following: my meds (a day’s worth), water or something to drink (with POTS and NCS you get dehydrated easily), a salty snack (diets for POTS and NCS need higher salt intake), my purse (my identification), my mobile phone (has my health and emergency information) and my medical bracelet. As mentioned above, it’s important that I allow extra time while traveling so that I am not rushed. I also must stay as hydrated as possible.
Are there any destinations that have been especially accommodating to your condition?
Thankfully, yes. The Hilton in Niagara Falls, Canada, went out of their way to make sure I had everything I needed accessibility wise, for the duration of our stay. This included changing our room to one that was larger, for ease of using my walker, and that had an accessible shower, etc. They did not make me feel that this was a burden but instead that this was not a problem and that my enjoyment was more important.
Another location was Kissimmee, Florida. I found the area to be quite accessible and accommodating to those who needed extra help. Disney World and each of its parks were fantastic for accessibility. These locations included accessible washrooms, ramps when needed, good aisle space inside buildings, and smooth walking surfaces, to name a few. Interestingly enough, the people of the area also had no reaction to any of my differences, which was amazing. This isn’t always the case. Because I began needing assistance when walking any distance when I was 21 years old, I have seen and heard people’s many reactions. Some people are over accommodating, which makes me very uncomfortable. Some are rude, making sarcastic comments. Some just stare.
What specific tools or resources help you manage your condition while traveling?
- My walker as I can’t walk long distances without it.
- The airport’s Accessibility Services and Facilities department.
- A personal, battery-operated fan. I take this with me when camping in the summer to help me stay cooler.
- Medication dispenser – I carry one that holds all my medication for one day plus another that carries my vitamins and other over-the-counter medications such as antihistamines, anti-nausea medication, etc.
What advice would you give to others with dysautonomia who want to travel but are apprehensive?
Start small. Take a day trip around your local area. When ready, graduate to weekends away. Travel does not need to be big, grand, exciting, world-encompassing adventures. It can be a weekend get-away with friends. Or a trip to the zoo with family. It’s about getting out of your comfort zone, seeing what the world offers. It’s about learning something new, something more than your four corners of the world. It’s about growing. It’s about living.
Can you describe an instance where you had to navigate a tricky health situation while abroad?
Recently my family and some of our friends traveled to Mexico for my sister and brother-in-law’s wedding. Traveling to and from required multiple bus trips, a flight and lots of walking. On the return to Canada, after a lengthy walk from one location to another, we needed to board a bus to take us to the terminal. While waiting, I ended up fainting. Thankfully, I was able to sit on one of the nearby chairs, but this spell (fainting over and over in a short period of time) lasted approximately 10 minutes, caused some panic with those on the same flight, panic with my family and the airport staff, and a lot of embarrassment for myself. Thankfully, my mom and one of the staff helped get me into a wheelchair just in time for the second, and last, bus’s arrival. Everyone was staring and talking about me and what happened. It was difficult but I told myself to act normally, be kind, and reminded myself that though it was very embarrassing for me, it was something scary and/or exciting for them (it’s not something that happens in most of their lives). I thanked the staff and assured them that I was fine and able to keep traveling. I just needed to stay in the wheelchair.
Nutrition and hydration are important for managing dysautonomia – how do you manage them while traveling?
Usually, this is easy. Whether traveling for a holiday or locally (grocery shopping, etc.) I always have a drink of some kind with me, a water bottle or bottle of Diet Pepsi most often. Always. It is very easy to get dehydrated when you have POTS or NCS – if anything it’s more accurate to say we can’t hydrate. When leaving home, I try to keep a Sweet and Salty granola bar in my purse or in my coat pocket. I always carry my day’s medications and money if needed to grab something more than what’s on me.
For flights in Canada and most places to Europe, I’ve been lucky enough to be allowed to keep my drink with me (I also have type-two diabetes). On longer flights, I usually order the cheese and cracker boxes or something similar that contains higher amounts of salt.
How does traveling and seeing new places impact your mental health and attitude towards living with dysautonomia?
It’s nothing short of essential. It is easy to get depressed, to hide away from the world whether intentionally or simply because it’s easier and less scary to stay home than go out and about. Having the ability to work from home has been wonderful but it has a downside. Sometimes, I find that two or three weeks have gone by, and I haven’t gone anywhere. Traveling, both locally and to far off places, allows me to be out there, meeting new people, seeing new places and seeing how others live. It’s something to look forward to. It’s something that makes our lives richer, fuller and complete.