As terrible lotteries go

Ashley Kalagian Blunt
I consider myself a healthy person. I’ve always had a regular exercise routine that at various times included running, swimming, pilates and weight training. I drink lots of water. I’ve never smoked, I don’t eat bacon, and I rarely drank excessively. I don’t have a car, so my daily step average was 18,000 steps. Aside from some weekends during my first uni degree, I’ve slept eight hours nightly throughout my life. In short, I’m pretty boring.

Okay, I probably ate too few vegetables and too much sugar. For several years, my go-to breakfast food was chocolate ice cream. But I overhauled my diet in my mid-20s, cut sugar way down and even ate broccoli, like, once a month. Broccoli!

Although I tried to make good choices to give myself the best chances, it was an illusion to think I had much control over my health. Health is a lottery. Not a jackpot powerball lottery, but a terrible lottery. Like Shirley Jackson’s ‘The Lottery’, in which the winner is stoned to death.

Getting post-infective fatigue syndrome was like winning a terrible lottery. It’s especially hard in my mid-thirties; just as I was finally developing career momentum, everything feels derailed.

But! As terrible lotteries go, PIFS isn’t the terriblest, at least in my case. For one thing, I’m not in pain. A common chronic fatigue symptom is joint pain, and I’ve somehow avoided that. Pain is a major factor in many conditions, including related ones like fibromyalgia. Yes, I spend a lot of my days sitting around, watching my life tick uselessly by, but that would be far worse if I was also in chronic pain.

And while it took half a year of appointments to get a diagnosis, once that happened, I was referred to the Fatigue Centre relatively quickly. At that point, my fatigue was getting worse and worse. I was afraid I’d keep getting sicker until I ended up bedridden for months or years. Once I met with the Fatigue Centre specialists and started following their advice, my symptoms stabilised. And since my first appointment, I’ve actually started to improve.

Six months ago, I’d spend entire days in bed and sometimes struggle to brush my teeth. I was so cognitively depleted, I couldn’t even figure out the process to reheat a pot of soup. And it is terrifying to be 34 years old and confused by soup.

Now, I almost always have the energy to take basic care of myself, and usually have two to three hours of normal energy levels a day, if I follow a strict routine (and don’t attempt anything physically demanding, like walking uphill). It’s a long way from being able to live a regular life – working, exercising, socialising, travelling – but it’s promising.

The Fatigue Centre specialists expect my illness to last three to five years. ‘Ten at most’, they added, ‘as a worst-case scenario’.

It’s frightening not knowing what caused my illness. It’s frightening that there’s no medical treatment, because medical science doesn’t even understand the physiology of this illness (you know the pharmaceutical industry would be selling me pills if they could). But after getting gradually worse for more than a year, it’s a relief to feel myself getting gradually better. Yes, I’m bored and sometimes light hurts my eyes and sometimes I struggle to breath and I can barely walk up a mild incline and sometimes I’m so tired it’s unbearable just to sit up.

But I’m not in pain and I’m going to get better.

And just in case, I’m eating broccoli every day.

 

4 thoughts on “As terrible lotteries go

  1. Well done Ashley for continuing to continue on!! A shit card life has dealt you.
    Maybe youand broccoli will become best friends going forward?
    Sending love and thoughts
    Lara x

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  2. Hi Ashley, I read this a few days ago but didn’t want to write just a quick response. Your post is so stoic and as always funny too, but I know you’re really doing it tough and I’m sorry.
    I hope your specialists are wrong and you recover more quickly. When I worked as a GP I had several patients who recovered over about a year, and I know when I had chronic fatigue after glandular fever I recovered after around 9 months. (Plus doctors aren’t always right as you’ve discovered!)
    Anyway all the best with your recovery – sounds like you’re taking care of yourself and I’m also a strong believer in the power of steamed greens 🙂

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    1. Thanks very much, Fiona, and that’s so good to hear about your patients – and yourself! Sorry to hear you were down with CFS as well. Nine months would probably have felt like forever at the time. This is the first time I’ve heard/read about people recovering in under a year, so it’s very encouraging. Maybe all the greens will help!

      Liked by 1 person

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