It was early April when I started feeling unwell. Several people in the office caught the same bug, and thanks to my crappy immune system, I was one of them. It was a good week or so of being stuck in bed with aches, exhaustion, sore throat, and other flu-like symptoms, and then I started feeling better again – but at some point, that improvement plateaued. Here I am, three months later: still sick.
Iceland was horrible and wonderful all at once – horrible only because I got a lot worse. For the first couple of days, I thought it might be jetlag, but it never went away. I woke up sore every day, aching, fatigued. My brain felt like it was running at half speed. It was like the flu was back, but with more pain. Actual, curl-into-the-foetal-position-and-cry pain. I’d wake up, the pain would hit, I’d pop 600mg of ibuprofen, and whimper until it kicked in.
It was in Iceland that I knew something wasn’t right.
This isn’t a normal virus.
I came back and saw the doctor several times. I was poked and prodded and they drew blood and ran test after test, all of which indicated that I was as healthy as a human can possibly be. The bill for those tests, after insurance, was $590. Almost six hundred dollars just to receive some compliments on my high Vitamin D levels and be told that everything else is – on paper – perfectly fine.
I’ve learned that there are few things more frustrating than being sick and knowing something inside of you is broken, but having no quantifiable evidence of it.
So I now have an unnameable disease (that most people around me believe is Chronic Fatigue Syndrome, aka Myalgic Encephalitis) that forces me to assess every single activity I do, both mental and physical, and try to figure out how much of a toll it will take on my body. Getting up, travelling to the office, working, and travelling home is enough to drain me of all energy. When I look after myself and take it easy, I gain energy, and then think everything is okay – so I go for a longer walk or bike ride, or go to a party, or have a few drinks – and just like that, I’m sick again. Like I was in Iceland.
I’m not running marathons. I’m not going on huge, strenuous bike rides. I’m not even doing anything the way I used to, and yet, if I do more than the bare minimum required to work five days a week, I crash spectacularly. Painkillers are always with me, anxiety medication is now a necessity, and no matter how well or how much I sleep, it’s never enough.
The worst thing about it is that I have no diagnosis. I’m sick, but with what? A Myalgic Encephalitis (ME) diagnosis requires ruling out all other possibilities, and six months of continuous symptoms. Based on that, I’ve got another three months of this before I can even consider a diagnosis of ME, and even then, there’s probably another few thousands of dollars on tests to rule out all other possibilities.
I want answers, but all I have are questions, pain, and fatigue.
I’m grateful for being able to work, and I’m grateful for being married to someone that understands I’m not well and wants me to get better. But this still sucks.
Welcome to physical purgatory.