Why have I been so sad? Why do I cry watching clichéd American TV shows? Where has my motivation gone? What’s going on? Am I depressed again? Or maybe it’s something else… Something else? Maybe it’s July. And why is July significant? Well, it just so happens that in the month of July, two exhausting years ago, I got sick, and I didn’t get better.

It took me reading a book about grief, listening to friends grieving family members and some terrible television before I clicked that that’s what was going on; I was grieving for the past two years. I wasn’t suffering from depression again, I wasn’t going backwards in my health, I wasn’t weak or pathetic, I was just really sad that those two years had happened and needed time to grieve.

Pieces of Sky is a brilliant YA novel about grief and growing up, which helped me get my head sorted.

I’ve tried to write this blog about three times but each time it just didn’t work; each time I’d try and find some humour in my situation like I normally do, poking fun at this beast that is chronic fatigue, talking about my “Fatigueiversary”, but it just fell flat. It was far too raw to laugh at, it was crap and that was ok, I was allowed to be sad that this has happened.

I know there are all sorts of positives and learning experiences that I’ll take away from battling CFS, and I’ve definitely done a fair amount of personal growth these past two years, but that’s for another blog post, when it’s not all so raw and upsetting. This time I’m going to share a little story I wrote and let the creative words tell the tale. This was written from what felt like the depths of despair. From my clearer and calmer vantage point I can see that it will all be ok, that I’m making progress, that I will recover, but at the time it certainly didn’t feel like it. Other chronic illness sufferers will know what I mean… To my friends mentioned in this story, know that in the composed light of reality I don’t begrudge any of you your health and success, I value you enormously, this was just a day it got too much. What a difference a day makes!

Treading Water

Her fingers worked hard, her palms were rigid as her wrists flicked seal-like back and forwards to keep her from sinking. Everyone else was moving away from her but she couldn’t go with them, she could barely breathe, how were they all leaving her behind so easily? Her legs swirled in a rhythm, in, out, in, out, keeping her afloat. Afloat wasn’t enough though.

She’d been a trailblazer, a box-ticker, the overachiever in her life. She’d made big decisions and headed off on her own path. She’d succeeded at everything she had put her mind to and now her mind couldn’t help her because her body held her captive. She was stuck and those she’d led were now not only catching up to her, but surpassing her, tearing away and leaving her in their wake.

How had this happened? How had she gone from the girl who’d gotten everything that she’d ever worked for to making no progress, to going backwards even? How was this her lot in life? She’d been tipped for success, she’d been celebrated for her brain and commitment and diligence. Brains and commitment and diligence didn’t matter now, she was being sucked under while everyone else in her life tore away from her.

But maybe she had never stopped in the one place for long enough to notice her world, to be snagged in the one place, unable to move forward and then have to appreciate how far she had come. To wonder what the rush had been if this was the reward? To ruminate on the lack of contentment her successes had brought her. To acknowledge that panic was not a normal everyday emotion, but one that had accompanied her in her previous busy life all too much. She should be panicking now. She should be freaking out.  But she was resolutely treading water while everyone raced ahead. She was sad about it, she was grieving for her old life, but she wasn’t panicked. Panic was far too an exhausting emotion for someone with chronic fatigue syndrome. Panic used up all the energy available for an entire day; panic sent you back to bed.

Her friends were buying houses and making babies and trekking off on travel plans while she trod the stagnant waters of chronic illness. Hoping. Believing. Striving for progress. Performing mental gymnastics psychologists couldn’t comprehend as she convinced herself that contrary to much of the available evidence she could get better. She would get better. She was getting better. She wanted to be happy for her friends, she knew she shouldn’t begrudge them their good news, but it was a heavy thing to hold on to. When she’d just learnt to float again, to ignore the others in the distance and be contented with her recent progress another baby was announced, another boyfriend was declared, another auction successfully attended. And bam, her delicate balance was gone and she felt the water trying to take her. Gravity knelt down and mocked her for her meagre efforts. She’d never win a race again, she felt she knew that, but surely she could make some more progress. This couldn’t be what her 26 healthy years had trained her for?

26 years of schooling and training and determination weren’t for her to be struck down with a mystery virus and then flattened by chronic fatigue. Surely not. What about her plans? What about her dreams? What about travelling the world or eventually starting her own business or publishing her first novel? What about living by the beach and learning to surf? What about meeting the right person and becoming a mum one day… what about those plans?

But as hard as it was, she knew she wouldn’t sink. She knew she’d keep fighting. She knew she’d keep striving. She knew she’d never face a fight so hard again unless it killed her. She knew she had to keep going because giving up was worse. So fuck the headaches hammering above her eyes, screw the screaming ears as they became inflamed, she’d swallow down against the swollen glands in her neck and know she’d keep that head high. She’d fight the exhaustion, she’d battle the anxiety and keep moving in spite of the muscle pain; she would get there.

That same gritty determination that had seen her succeed in her previous healthy life would come to the fore now and help her, even as those specs in the water seemed ever further away. She wouldn’t be defeated. It was a different life to the one she’d imagined, but it was still hers and she was claiming it for all it was worth.