October 11, 2012

In The Beginning

Posted in Journey tagged , , at 1:19 pm by Reva

So it’s a dreary cold mid-Spring day here, so cold there is snow in the ranges. And considering the most exciting thing I’ve done today is going for blood tests I thought I’d start to write about my ME/CFS journey. I’ll probably write this over a few posts.

I’m one of the 20% of people with ME/CFS who had a gradual onset of the condition. I don’t have a specific time that I can’t pinpoint when my symptoms started, but I can remember things over my adolescent/teenage years that may be linked.

I can remember sitting in the passenger seat of the car with my mum driving, and her telling me to stop being so stupid. My body had lurched forward as she stopped or went around a corner. She thought I was making fun of her driving but I remember I hadn’t meant it, I was just so tired I didn’t have the strength to hold myself up properly.

I can remember having headaches so bad I’d cry myself to sleep. I wouldn’t call them migraines from what other people have told me about them. But they were always worse when I was getting ready to sleep. I’d feel so sick from the pain that the idea of getting up to take something was horrifying. And often it was so long since I’d eaten I knew I’d also need a snack so the pain killers didn’t make me vomit.

I can remember these headaches were always worse the more I worked at my part time job – working in a supermarket deli. 3-8 hours on my feet, on a concrete floor. Reaching into a cabinet to serve a customer was always a struggle due to my lack of height so that probably didn’t help. Leaning forward over a deep sink to do dishes. Lifting heavy boxes. Lifting heavy trays of raw chicken. I can remember after working a close which involved scrubbing out one, maybe two, ovens, a Bain Marie, maybe a cabinet fridge and the concrete floors, I’d lie in bed for hours before I could fall asleep. Every inch of my body ached and it hurt to move. My legs, my back, my arms, my wrists, my feet, my toes, my knees, my elbows, my ankles, my fingers, my face… It didn’t occur to me that maybe this wasn’t normal, after all everyone says their body aches after hard work.

I can remember trying to bring up the fact that I was so tired with friends, but when the response was always “oh yeah, me too!!” I once again thought it was normal.

I can remember not knowing why everyone else around me could manage to study full time, work part time and still go out and party at night while I could barely manage the first two. And for at least one year of uni I know this caused me to start wondering if there was something wrong with me. By the end of my second year of uni I’d failed my first subject. For someone who’d always sailed through this was devastating. I’d always thought that my ability to do my school work was what made me important. I couldn’t seem to remember details like I used to. I was never good at sport, was never part of the popular group, even in my extended family I felt like an outsider so now I wasn’t smart either. But everyone fails a subject at uni so once again everyone else brushed it aside.

But I knew something wasn’t right and early the next year finally took myself to a doctor. It was the 6th of March 2002. I told her how exhausted I was, how I was struggling to get to my classes which wasn’t normal for me. She was understanding and sent me off for blood tests. A week later – my 21st birthday – I went back for my test results. She told me I didn’t have glandular fever, my iron levels were at the low end of normal, and there was no infections. She then said to look after myself, rest so that it doesn’t “turn into” chronic fatigue syndrome and come back if it doesn’t improve.

And so I went home.

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