When I started my blog, I soon found out I was not the only one who travels with a Chronic Illness. But I did not find that many people actually talking about travel with chronic illnesses on their blogs. I would like to use this space and share more inspiring stories from other travel bloggers who travel with chronic illnesses. This time, I interviewed Lindsay from The Neverending Wanderlust who has to deal with a whole bunch of chronic illnesses. Read her story here:
Can you please introduce yourself a little bit?
Hi everyone! I’m a photographer and travel blogger from the Midwest, USA. Coming from a military family, I’ve been an avid traveler since a very young age. After I spent 8 years in the corporate world, I quit my full time job in 2010 and slowly (very) made my way around the world. This year, I returned from teaching in South Korea for 2.5 years and am currently preparing to move to Bulgaria this Autumn.
About the Neverending Wanderlust
I’m a food, particularly cheese, addict so I’m always finding myself seeking out new and interesting foods everywhere I go. I momentarily got over my terrible fear of spiders and tried tarantula in Cambodia (only a leg though) and distinctly remember trying not to vomit after having durian in Vietnam. I document all my travels over on my blog The Neverending Wanderlust. Through my blog, I focus on sharing my photography, mid-range travel stories, and foodie adventures. My itineraries are full of useful information, but none of them are jam-packed, as travel with chronic illnesses has definitely slowed me down. I am diagnosed with Unspecified Connective Tissue Disease, Raynaud’s Syndrome and Fibromyalgia! But I’m excited to share my story with you!
Can you explain what Unspecified Connective Tissue Disease is?
Unspecified (or Undifferentiated) Connective Tissue Disease (UCTD) is a systemic autoimmune disease that can wreak havoc on the body. It is in the same family as Lupus, Rheumatoid Arthritis, and Scleroderma. The thing that sets UCTD apart is that although lab tests directly point to an autoimmune disorder, the patient doesn’t (yet) meet enough criteria to be diagnosed with either Lupus, RA, or Scleroderma.
My story with UCTD
My story starts back in 2010, while I was living in England. During that time, I started to experience something I dubbed the Lindsay Special. 2-3 times per year, I would get massively fatigued (similar to mono or glandular fever), run a low-grade fever, and pretty much be a zombie for about 2 weeks straight.
This continued on-and-off over the next 5 years without a firm diagnosis. By time 2015 rolled around, I was fed up and determined to figure out what the heck was going on. I became a regular at my local hospital, in South Korea, and they started running tests. They too were pretty stumped as to what this mysterious illness could be and kept referring me to various specialists in hopes that they could figure out what was going on.
Getting a diagnose
By 2016, however, I started experiencing new symptoms. I had my first bout of Raynaud’s Syndrome (explained below), I was fatigued constantly, had persistent body aches, and began experiencing regular mental fog. I was a mess! During the summer of 2016 I was finally able to take the time off work I needed to get some answers. Based on my extensive Google research, I determined that I needed to see a Rheumatologist and booked in at my local hospital. I hoped that I could finally get some answers.
On my first visit with Dr. Kim, I thoroughly explained my symptoms, and he immediately told me I definitely was experiencing Raynaud’s Phenomenon and he was going to run some tests to see if was related to another autoimmune disease. After waiting a week for the results to come back, I was officially diagnosed with the chronic illnesses: UCTD with Raynaud’s Syndrome and Fibromyalgia. Though I was shocked, and a bit scared, I was really thankful to finally have a diagnosis I could work with.
I never heard of Raynaud’s Syndrome, what is that?
Raynaud’s Syndrome is a condition that restricts the blood flow to your fingers and toes. People with Raynaud’s Syndrome can often lose all feeling and color in their digits when exposed to cold. People with Raynaud’s have to be very careful in cold weather, as they can develop frostbite, gangrene, and abscesses with ease. In my case, when I get cold (or even chilly sometimes), my fingers/toes turn completely white and numb. My coworkers in Korea affectionately called me White Walker or Elsa, depending on the day!
That is quite the list of chronic illnesses, what is their relation with each other?
Great question! Raynaud’s can be classified as either primary or secondary. Primary Raynaud’s is the most common and that’s it. You can take some medicine to help with blood flow and try to keep yourself warm (wearing gloves, etc). Secondary Raynaud’s is a symptom of a systemic autoimmune disorder. I have Secondary Raynaud’s and it was actually the thing that finally got the doctors looking in the right direction! In addition, many patients with an autoimmune disease also suffer from Fibromyalgia and I was blessed with that one too!
It surprises me you can even travel with so many chronic illnesses, how do you do that?
Well, it isn’t easy! To be honest, I have my good days and I have my very bad days. More good than bad, but I never know how I’m going to feel until I’m up and moving. I’ve done a lot of research over the past year and have made a concerted effort to take care of myself, take my prescribed medications, and listen to my body. The main things that I’ve had to change are the pace of my travel with these chronic illnesses and how I prepare for a trip.
Preparation when you travel with chronic illnesses
Before leaving for a trip, I have to make sure I have enough medicine. Currently I take 6 different prescriptions and 6 supplements everywhere I go. I have to make sure all my medication and supplements are permitted in each country. I also carry with me a doctor’s note explaining what each pill is and why I’m taking it. Since I’m getting ready to move to Bulgaria for 10 months, I try to stock up on as much medicine as I can so I have ample time to find a doctor once I get settled in to my new home.
How have your illnesses changed your style of travel?
I’ve never been a person who has liked jam-packed itineraries, but developing a chronic illness has definitely slowed me down even more. I started having symptoms in 2010 and wasn’t diagnosed until 2016. During that time I had several days/weeks where I battled persistent fatigue, severe body pain, and chronic colds. Since I was sick with some frequency, especially over the last couple of years, I lost a great deal of muscle mass, which impacted my ability to ‘pound the pavement’ on any given day.
I am a slow traveler now, snail’s pace even, and I’m perfectly ok with that. Before I plan a trip, I make sure I have plenty of down-time before and after, and make sure I don’t cram too much in my schedule. During my time in Bulgaria, I plan to go on 5 weekend trips out of the country and 5 weekend trips in-country. I may add an additional trip in there, but that will depend solely on how I’m feeling. That breaks down to 1 trip per month, in or out of the country, and will allow me the time I need to recover. If I don’t get enough rest and take a trip anyways, I almost always catch a cold that will last for 1-2 weeks. Definitely not worth it!
Although travel with these chronic illnesses slowed me down considerably, over the past 6 years, I’ve still managed to see quite a lot in Western Europe and Asia. I’m now looking forward to moseying my way through the Balkans.
Read more: Travel with Chronic Pain
Are there any limitations what you can or can’t do with your medication and illnesses?
Right now I’m building up my endurance and leg muscles so that I can do more walking and hiking. The second time I visited Edinburgh and the Scottish Highlands, we walked everywhere we wanted to go in the city and the Highlands Tour we took had a fair bit of hiking as well. I was fully able to handle all of that then; I’m definitely not at that level of fitness now.
I also rarely drink now. For one thing, my medicine is very hard on the liver and I don’t want to run the risk of damaging it. Also, alcohol and pain meds do not go together. If I have to decide between having a couple beers and being pain-free, I’ll choose pain-free any day.
The other big thing is sunshine. Not only does my body have an aversion to cold, but I can also have an allergic reaction to high amounts of sunshine. Sunscreen and protective clothing is not an option if I’m going to be outside and I definitely have to limit my exposure to the cold and the sun when I travel.
Do you have any practical tips for people who travel with the same problems?
Protect your skin with sunscreen, protective clothing, and hats. In cold weather, invest in some portable hand warmers. You can buy rechargeable hand-warmers pretty cheaply or single-use packs for even less. Make sure you keep your toes warm as well. Get some single-use toe warmers and wear good socks. Make sure you get enough protein and Vitamin B, this will help with the fatigue. Listen to your body; there is no need to push yourself too hard one day and pay for it the next three. If you are traveling in a group, don’t be afraid to speak up if you need to sit down for a little while or find a place to lay down for a bit. You’ll feel better and you’ll be better company as well.
If you could trade in any of your 3 illnesses, which one would it be?
Oooh, that’s a tough one. I think I’d trade-in the unspecified connective tissue disease. The pain from the Fibromyalgia is no fun and Raynaud’s is no picnic either. People with UCTD may later develop Mixed Connective Tissue Disease (where they have lab results and dominant symptoms of multiple diseases), develop Rheumatoid Arthritis, Lupus or Scleroderma, or they may stay right where they are at. The potential for developing a disease much worse than what I currently have is obviously worrying, so I’d trade my UCTD in for sure.
How do you see your future as a traveler with these chronic conditions?
After the initial shock of learning about my disease, it has actually inspired me to do absolutely as much as I can while I still can. I have no idea if my disease will progress, or if it will stay right where it’s at. I have no idea how I’ll feel in 5 years, or if I will be able to travel with chronic illnesses much at all. I’ve re-evaluated my travel priorities and am making sure I see my dream places sooner rather than later.
Thank you Lindsay for taking the time to talk about travel with your chronic illnesses for my Chronic Illness Chronicles. If you want to know more about Lindsay, please visit her blog at The Neverending Wanderlust, or follow her on her social media like Facebook or Instagram.
Do you travel with a Chronic Illness or a Chronic condition? And would you like to be featured on this blog in the Travel with Chronic Illness Chronicles? Please contact me with your details at firstname.lastname@example.org and you get a change to share your story!