What I Learned About Traveling With Chronic Illness on My Recent Holiday
Sitting in the Dublin airport waiting for my gate to open to see friends I haven’t seen since I returned to Ireland from four years of travels from 2011 to 2015 had my heart in a flutter. I didn’t think I would even make it this far, so excitement was an understatement. I booked long-term parking for the week so I could drive straight to the airport car-park and back without bothering anyone. I never thought of how much energy that alone would take out of me and I kind of resigned myself to not going but…needless to say, the universe works in mysterious ways. And so began a very spontaneous holiday when my sister offered to get me to the airport and I borrowed my mam’s spare walking stick – a mind-melt in itself – but I could barely hold myself up, so this was a good compromise for me to get to a sunny destination. I could feel everyone in my family rooting for me to make it. (Thanks guys!)
Two days prior to departure, something inside of me started tightening and it happened all day. A feeling like someone was pinching and putting every one of my muscles and nerves in a vice grip; it was excruciating and left me very weak. You know those cold compresses where you snap the button and everything inside hardens and freezes up? It’s a similar bodily sensation to that, only I’m not a cold compress, so my body – through no fault of its own – was definitely mis-firing for some reason.
I had just one more day in work to push through, but that felt like climbing Everest, as anyone with ME, fibromyalgia or chronic pain knows. I finally broke down and had a big cry and hug with my mam in the morning (natural medicine at its best). I was nearly falling asleep at my desk in work because I had to take mini doses of Xanax just to take the edge off the spasms and burning pain. Up to this point I have only ever taken CBD oil, THC oil, edibles or Xanax at night, but it all comes full circle. Just when you think you are managing your condition, someone pulls a rug and you realize you haven’t been out-running your pain at all; it’s actually getting worse in ways.
Not knowing if your body can hold itself up is a humbling experience, even more so when you leave your routine to travel by yourself – but I didn’t manage alone. I reached out to the group in Chronic Pain Ireland asking them to hold a good thought for me for a lower pain day. Someone suggested I ask for airport assistance, which I did when I was checking in online. But when I reached the airport, I checked my cabin luggage in and never thought to ask the desk about the assistance. I figured I had to find a specially dedicated desk.
Well, through fatigue and stubbornness I made my way level by level to the departure gate. After drinking a decaf coffee after check-in and an hour’s rest, I made my way to the gate. This all could have been helped if I had just sought out the airport assistance, but my fear of being judged “not sick enough” and the enveloping brain fog both kept me operating on auto-pilot to just get to the gate. Using the stick was a trip in itself. I had to slow my pace right down so it helped me conserve energy. It also made me realize how fast our society paces itself at – it’s too fast, people! Fellow travelers bumped off me and stood on my feet trying to get around me faster and I thought, “Have I done this to people using aids?” And the answer is yes. Unfortunately I have tried to get in front of people many times, not considering anything but that they were in my way, slowing me from reaching my destination, and for that I profusely apologize right now.
Once on the plane, there was nothing I could do but put on my eye-mask and stick earplugs in and try to stop any more stimuli from making the pain worse. Once I got to the other side I was too embarrassed to ask for assistance with the language barrier (again, no need to be a martyr, Niamh – asking would have solved it for me easy peasy Portuguese-y), but I managed well enough taking it slow on the stick. I collected my luggage and, through the kindness of Portuguese airport staff, got skipped to the top of the queue for a taxi. Small wins – yay!
Checklist for my next holiday with chronic illness:
– Lift to and from the airport on both sides (Download Uber app if used in country)
– Book airport assistance
– Use airport assistance
– Ask for help when needed
– Eye-mask and ear-plugs
– The Ultimate travel pillow
– Walking stick/mobility aid
– Powerbank charger for phone/tablets
– Suitcase with wheels
– Use Google Recommendations for everything
– Hoodie…because wherever you go, your inability to regulate your body temperature will follow
– Copy of prescription
– Is marijuana decriminalized there?
– Book two days off to recover when you get home.
The holiday itself was amazing. It took a few days of taking extra meds and powering down early at night to allow me to actually catch up with the girls, but they were so understanding. We only did one or two things a day when I was feeling able and took an Uber everywhere till I was strong enough to walk longer distances.
Sometimes when you live with a condition you think everyone else has frozen in awesome time. But they have their battles and work and routines too; plus we had all calmed down from our backpacking days, so the pace suited us all. I managed to keep up my yin yoga and meditation practice in the morning which I believe played a huge part in acclimating myself over there.
The sunshine renewed me. Oh, how it renewed me! But more than that it was the laughter between friends that have backpacked and couch-surfed together and shared so many adventures in so many countries. Reliving our shenanigans made me feel real again. And we added so many laughs to this trip we could write a book on Portuguese faux pas. I got to watch Joao Gonzalez sing Fado Vadio – Portuguese Blues (Fado Vadio literally translates as bohemian, vagabond or loafer Fado and is used to describe Fado sung more to express emotions than for commercial ends which explains why I loved it so much). I highly recommend it if you find yourself in the tourist area of Bairro Also.
We used Google Recommendations and it saved us a ton of time traipsing around discerning between mediocre tourist meals and authentic Portuguese food and top notch local entertainment, so be sure to check it out to conserve some energy on your next trip!
Marijuana is also decriminalized in Portugal so I didn’t feel like a miscreant when I needed some natural pain relief. They have adopted it so well; Irish Government, take note! The whole city had a very chilled out vibe with a great park life dotted with kiosks selling 70-cent beer and €2 wine. I wasn’t drinking alcohol, but I did appreciate their freshly squeezed orange juice. Mmm. There were hula hoopers, circus performers, tai chi and yoga enthusiasts, just lots of people hanging out, being friendly and jamming with their instruments of choice. Plus they had park massage areas and were so dog-friendly they’d probably massage the dogs too! I felt rejuvenated when I was leaving and was sorry I had only the six days, because by the end of it I wanted to walk more and I even got my hula hoop out for five minutes before my leg pain put a stop to it. Who knows how much better we’d feel if we lived in a warmer climate?
I had a bit of weakness after the flight was delayed home and I had to stand on the bus journey to the airplane platform, but I managed somehow. I returned to work the next day from 3:00 p.m. to 11:00 p.m. and instantly began a flare-up. I don’t know how I managed to push through…my brain was literally shutting down.
By day three I was glaring at people, feeling like they were about to tell me I’d done something wrong or just wouldn’t understand their question because of the rapid decline experienced with ME and fibro flares. I’m convinced it makes us work from our ancient limbic and reptilian systems of the brain; explaining why I feel driven from emotions such as anxiety and overwhelm along with heart palpitations. My cognition is impaired at that point but my nervous system feels under attack and keeps me wired from fear. I’m sure when more funding is allocated towards research they will uncover many facets of what we have been trying to explain to doctors for years.
Our day will come, but until then it’s camaraderie and sun holidays all the way. I need more of these vibrant colors and belly laughs in my life!
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via anyaberkut.