This is part 2 of my story. If you haven’t already and are interested in reading the first part about my childhood and teen years, part 1 can be found here. This part covers falling ill, being diagnosed with my first chronic illness and adjusting to being “disabled”.
Although I was fairly confident that I was going to make it to university despite dropping out to focus on my mental health, it didn’t take long before I started to wish I had something else to do with my time until I was eligible for university entrance. Unfortunately for me, my parents didn’t expect that I’d leave school before finishing and had no real need for a car, so they hadn’t quite started teaching me how to drive.
We lived rurally, so getting a job depended on whether they were able to take me to my shifts. In New Zealand, you must be on your learner’s licence (which requires a fully license driver to accompany you on every drive) for at least six months before you can sit the next level which would allow me to drive myself to work. So, by the time I was able to start working, I’d been out of school for almost eight months.
My first job was as a checkout operator at a local supermarket. I can’t even begin to tell you how much I loved that job. It wasn’t mentally stimulating at all, but it felt nice to be doing something productive. I also really enjoyed the social contact, especially with regulars (which, in a small town, is basically everyone!). I also discovered a love for work that is repetitive and “boring”, because it was somehow soothing to my brain.
I had only worked at this supermarket for six months before I fell ill, so it’s not surprising that they weren’t willing to accommodate my health issues. I was threatened with firing around the same time as I was officially diagnosed so I decided to quit to keep my record from being tainted with firing. I had no idea what that diagnosis actually meant for me going forward.
I fell ill in April 2006 after visiting my ill boyfriend for the weekend. I never thought he could possibly have anything potentially devastating, and up until that point in my life, I’d been a pretty healthy woman. My immune system had never let me down before. I had no reason to think it wasn’t “safe” to visit him. If I caught what he had, I’d be fine!
I was fine when I caught it. At least, it seemed that way at first. It was literally a mild sore throat and a niggly but not unbearable amount of pain in my side. My next shift wasn’t until the second or third day of the illness, and I just didn’t feel it was bad enough to call in sick. Things just went downhill from there. Three weeks of worsening fatigue later, I finally went and saw my doctor.
I honestly cannot remember the sequence of events after this up until I finally asked for a second opinion in October 2006. I only remember multiple visits and no answers. Except that maybe I was depressed again. You know, that mental illness I apparently had since I was four that had never made me physically ill like this before. Like, I know I was working now, but it wasn’t any more stressful than school.
The doctor I saw for a second opinion IMMEDIATELY recognised what it could be. He reviewed the blood tests my GP had ordered, and sure enough, I had markers for the Epstein-Barr virus AND a raised liver function. The illness I had was glandular fever/mononucleosis and my immune system had done such a good job of suppressing it that I thought it was just a basic ass sore throat and resting wasn’t necessary.
Because I quit my first job shortly before Christmas, it was easy to find another job at a less-than-local, but extremely accommodating and disability-friendly supermarket. I didn’t realise it at the time, but I really shouldn’t have gotten that job. Despite being really flexible on scheduling and allowing me to swap shifts when necessary, I worked myself into permanent disability.
After 3 months at that supermarket and 2 months of graded exercise therapy (GET), I simply couldn’t do it anymore. My body was running on fumes every day, and the therapy that had been sold to me as the gold standard was just making it all so much worse. I didn’t know this at the time and thought it was work that was too much for me, but when I still failed to get better towards the end of my funded GET sessions, I started to question everything.
I was bedbound for a few months by the end of my GET sessions. I plan to write more about this in its own separate entry, but I truly believe that graded exercise therapy caused MORE disability. I don’t know why it sometimes works for some people but not for me, but it really didn’t work for me. I was devastated, but I kept trying because surely a mild viral infection that 99% of people get and recover just fine from wasn’t going to take me out forever!
I started to feel better once I discovered pacing, but because I also had undiagnosed ADHD, it was also extremely difficult to force myself to stop when I knew I was at my limit. It’s still difficult now and I find myself extremely frustrated when I have a flare after doing simple things like walking my dogs or going to a doctor’s appointment. But it’s literally the only thing that works. If I don’t HAVE to do it, I’m not going to do it until I know I can without consequence.
Part 3 of my story will be about my subsequent diagnoses and how I’ve navigated life since falling ill. Everything I’ve discussed in these entries will likely get their own entries somewhere down the line, but I am more than happy to answer questions in the comments or via email if you have them. Stay tuned!
PLEASE NOTE: I am not a medical professional. Any information or advice provided in this entry is for general purposes. Please read the disclaimer for more information, if you haven't already done so.