Traveling the World with a Chronic Illness

After ending a particularly enraging conversation in March or February 2019, I noticed that almost every single bone and joint in my body ached. I noticed my muscles were on pins and needles. I noticed that I was more tired than I should be. I noticed that I could barely move. This wasn’t the first time that I noticed these symptoms individually, but it was the first time they all hit me at once. To be completely honest, it wasn’t until the next morning when I had trouble getting out of bed did I decide to call the doctor. Prior to this incident, I’d had moments of immense fatigue, but it was always chalked up to physical inactivity or perhaps low iron, but I knew all this was different. I took a visit to my primary care physician who referred me to a rheumatologist who ran some tests/scans and diagnosed me with Connective Tissue Disease, either Mixed or Undifferentiated. I had many of the symptoms of Lupus or Rheumatoid Arthritis, but too many symptoms overlapped to give a firm diagnoses. The general gist of the disease is that my immune system attacks my body because it’s an asshole. It starts with the joints then works its way to organs and the like. It can be complicated, but I caught it early so there’s that. He put me on a very common immunosuppressant and I went back to work the next day. It was around this time that I was firming up my plans to leave work in late May 2018 and I was a bit scared to be out in the world with a new diagnosis. I went back to the doctor and told him my fears, and he gave me a kind of “meh, I think you’ll be ok” and that was enough for me!

I basically have to take one pill a day to keep things in check with the option to take like 2 more to make life simpler in the long run, and wear sunscreen everyday. Photosensitivity is a thing. While this sounds rather simple, it can actually be the worst. First, I have to keep the pills organized and separated while concurrently making sure that my supply doesn’t get too hot or too cold (I sound like a drug dealer), then I have to remember to take them everyday at the same time, THEN I have to deal with the side effects and plan my days accordingly. Example, I know that one of the pills causes stomach problems if I don’t take it for a bit, so this means that I have to take the pill in the morning and try to keep proximity to a toilet or take them at night and swear off drinking - which somehow seems unfair to me, Patrick. But then, because it’s an immunosuppressant, I have to make sure that I don’t catch any colds or bugs, so this means vitamins and hand sanitizers - which have their own troubles. I won’t even start on PReP.

So let’s say that I’ve been feeling better for a few weeks, and I decide that I’m not taking the medicine? Well. Nothing happens. I go along, feeling great and well, then my body laughs at me and gives out. This is how I ended up in Bangkok for three long, gruesome, sickly, expensive weeks. It got so bad there that I came very close to coming home, but I realized it was actually cheaper to get an actual hotel room and see a doctor than it would be to fly home, cuz duh. So, I hadn’t been taking my medicine, and I wasn’t really wearing sunscreen in Cambodia because I wanted to show the Khmers that people with skin as dark as theirs can also be wealthy and successful. In hindsight, it was dumb, but I was also drinking a lot.

My rheumy in the States suggested that I go see a rheumatologist every three months regardless of where I was to get some tests, and it just so happens that Thailand has a lovely medical tourism apparatus. I made my appointment and went to see the doc. It was actually a pretty smooth set up. I went, paid the $20 copay, saw the nurse, got some tests, and saw the doc. She yelled at me, saw my passport pic and realized that I wasn’t wearing sunscreen and yelled some more, and suggested that if I wasn’t going to take my health seriously then I should just go home. So I have been trying to be better.

I think on a day to day basis, the worst part if the fatigue. I’m tired all. the. time. I’d be lying if I said that it doesn’t affect my mood seeing my hostel mates going out all night and then I’m there feeling like I’m going to passout around 8pm, but life isn’t perfect. I do find myself asking, “what if” a lot, but I’m quite literally traveling the world so I calm that pity party on down. Plus, the fatigue only sets in if I haven’t been taking my meds, so the onus is still on me.

All in all, it hasn’t been the worst, but there is still this feeling that I’m running on borrowed time. I hope that it’s all in my head, but that’s the beauty of life - you never know what’s going to happen next.