What It’s Like to Travel With Chronic Fatigue
“Fuck it,” I said as I clicked book. The decision was final. I was going on an adventure.
When travelling, especially as a young person, there’s an unspoken expectation that you have boundless energy, so being constantly drained doesn’t fit the bill.
As a 17-year-old in my final year of school, I contracted glandular fever, and unlike my peers, who also experienced glandular throughout the year, my body didn’t recover. Instead, my immune system remained weak, my energy levels plummeted, and my social life went into retirement.
On the cusp of adulthood – the time in life when they say you blossom as a person, my body trapped me and held me hostage.
While my friends were studying and partying, I slept and mindlessly binged TV to keep myself somewhat entertained.
Now and then, my chronic fatigue would alleviate, and I would think finally, my juice cleanses, acupuncture treatments and vitamin infusions had worked. If I just kept it up, I would bounce back, be my normal self and could finally get on with it. “It” being the life I felt robbed of, the life I had planned out in my head. But as quickly as I felt reinvigorated, my muscles would once again feel limp, my brain would fog up, and there I would be – once again, stuck on the couch.
By this time, I resembled a potato. Months of inactivity meant my muscles had wasted away, replaced with blubber. I had to train to walk down the street; I literally worked up to doing a blocky. I would be out of breath easily, and my resting heart rate was high, like having run a marathon without getting off my bum high. It was one cruel cycle, not being able to move — so not being able to move.
My body had turned its back on me, and my mind was beyond frustrated. The things I had once taken for granted as a fit young person were now out of reach.
Making it to any social activity in the first year was an achievement in itself. I made it to my year 12 formal – only to drag my date out of the after-party 30-minutes in. I left my graduation dinner after the entrée, exhausted from greeting the other families on the table.
18ths, for the most part, were a no go. But on the odd occasion that I did make it to one, I couldn’t drink and would be at home, tucked in by 10pm, paying for my youthful adventure for at least the next few days.
A year after I received the Chronic Fatigue diagnosis, I was lonely and desperate to get out of the house. So, I did what any 18-year-old would do: I trawled through every job ad I could find for a part-time job. Only, unlike most of my peers, I had some specific guidelines. I needed a job that required little standing, no previous experience and nothing physically demanding.
About nine months later and with no job meeting these requirements, my impatient 18-year-old self took a gig at the local pharmacy. Standing and moving merchandise up and downstairs for eight hours a day. What a fucking idiot I was. Safe to say that went sideways quickly.
Fast forward to today, it’s 2020, and my body now operates reasonably well. Most of the time, I manage to fumble my way through uni, work and socialising. My reality is different from most of my friends, how I spend my time continues to be dictated by my energy, and perhaps more importantly, how I wish to exert my energy.
As a 21-year-old, I have the same desire to see the world as I did at 17, but I’ve now paid the ransom, done the work and regained control.
That said, on the odd occasion, I have, what I like to call a “fuck it” moment and go for it.
I have most of my “fuck it” moments when it comes to travel.
I would categorise booking a solo three-week trip to the USA and Canada a mere three weeks before the departure date a “fuck it” moment.
Sure, I had to spend the first few days of the trip in a hotel resting before I could start my adventure. And I was the dork that was ready for bed by 6pm each night. But I did it. I travelled on my own in a foreign country.
The same recklessness could be said of me when I applied for a month-long writing workshop in Japan. Ten hours of flying with no sleep, navigating the way to the hostel on the train and carrying 20kg of luggage up and down endless flights of stairs that make up Tokyo’s subway stations.
Walking kilometres home after missing the last train and belting out circa 2009 Miley Cyrus at karaoke way past midnight; 17, 18, 19 and 20-year-old me would have thought I was hallucinating but I did it, with little repercussions.
Although I currently have no trips planned, the very nature of a “fuck it” moment is spontaneity and recklessness. So, it’s highly likely my next trip will come as a surprise as much to me as it does to those around me.
When I think of what this prolonged period of ill health has taught me, a few things come to mind. The fatigue itself taught me to slow down wherever possible and that nothing is worth compromising your health.
The invisible nature of chronic fatigue taught me to be more empathetic and considerate of what others may have going on because you can’t look at someone and know what they are going through.
The physical pain and compromised immune system taught me to take a breathe and practice self-care. While we may poke fun at self-care as an excuse to be selfish or lazy, I genuinely believe it to be vital in maintaining good health. A cold-pressed juice, a facial, a lazy day at home, a yoga or meditation class — taking time to yourself, slowing down and relaxing goes a long way in helping to maintain good health. Had I not experienced ill-health in early adulthood, I would not have developed self-care practices, and for me, it took being robbed of my health to set me on the path to good health.
Cover by Stacey Gabrielle Koenitz Rozells