For a long stretch of my life, I believed being tired all the time was a feeling everyone had. Like always wishing you were on holiday or not knowing what to wear to work.

When I realised it wasn’t that, I thought it was a secret defect instead. I thought this after noticing that most people seemed to be able to kick on at the party, get up the next day and continue through life in a Poweraded breeze while I lay in bed with the curtains drawn, unable to move for the rest of the weekend. Being tired all the time can get very boring and very depressing very quickly.

It took burning myself out to a reckless degree in my mid 20s to understand something greater than myself was going on and that it needed to be investigated. In my desperate attempt to be fixed, I sought out the most renowned doctor in Melbourne, who prescribed me two tote bags’ worth of supplements and a strict elimination diet for six weeks.

I took the pills. I ate the lettuce. I drank the soda water. The bloods came back. Nothing changed.

I was diagnosed with mild Chronic Fatigue Syndrome, of which about 18-20,000 New Zealanders suffer from, and is caused by a range of reasons that no one really knows for sure yet. Trauma, physical exertion, over-achieving, genetics, making out with someone regrettable at high school and getting glandular fever, or even worse, no reason at all. Fatigue is a sleuthy beast.

If you have it, you’re tired, unrefreshed by sleep, often low in vitamins that don’t absorb into your body. Physical exercise can make it worse, but so can none at all. You’re cold a lot of the time and feel pain more intensely than most. You get sick often and are advised to be cautious of vaccines. It’s even become an effect of long Covid. I have it mildly and can only imagine how debilitating it can be further along the spectrum.

But despite the diagnosis, I pressed on. I resented my soft body and wanted to be a strong woman that hadn’t succumbed to the fad of Rushing Woman's Syndrome or wanting too much out of my little life. 

I’d get up at 6.30am and Uber to the clinic to sit with an IV dripping vitamins into my body, often in tears because the whole experience felt so futile and stupid like I was pretending I had something very serious when I just needed a nap. I’d often faint or be sick, patch up, slap on some lipstick, wipe under my eyes, and take another ride to get to the office by 8am and stay there till 9pm. 

I did this for a string of months and thousands of dollars I couldn’t really afford until one day the doctor came in and said, ‘You must stop, immediately’. When I quit my job, the CFO of the company took me out for breakfast and told me I was making the biggest mistake of my career.

The most painful part of it is its invisibility. I grew up with very hard-working parents and audacious dreams of fleeing the regions to find my full flight in the world. This and fatigue do not go hand in hand. You go to the party, you seem fine. You go to work, you’re able to hold down a high-pressure presentation, smile at the lunch, and be a fun person for people to be around. 

But it’s the behind-the-scenes, the aftermath, the end-of-the-days when no one can see where it manifests where it really lives. It’s left me disappointing friends, cancelling plans, and I imagine a frustrating person to be in a relationship with. These parts are cruel and unforgiving.

After quitting that job, it took me three grey marled months to recover and develop a philosophy on how I could go forward with life. I wrote for a living, worked on shoots, pulled a lot of late nights, and moved around a lot. I still had those dreams. I didn’t want to let them go. 

But the difficulty is that Chronic Fatigue, like mental health, is notoriously difficult to take a marker pen to and ring-fence where it stops and where the simple effects of just being alive begin. Is it normal to be this tired? To wake up feeling like you haven’t even slept? Or is it something else? 

Before my diagnosis, there was a greater mantra that circulated in my head: how much of this is my fault? As though tiredness is a weakness that can be cured by going for a run, eating a piece of fruit or just trying harder. I had to tread softly.

There are the dark times, but there are also quiet, graceful moments too. I have friendships founded on crawling into bed in our underwear, drinking gin and tea and watching movie trailers all night. They have become friends who unravel with you, who get you, who happily recline quietly alongside you, undemanding of much at all.

I know it comes across as trite to say, ‘I have come to love it’, but it’s true in a perverse way. You want to be ‘normal’ - you can’t. Life is painful like that. But having this syndrome brings you so close to your body’s barometer, you can have intimate conversations with it and what it needs. And if you deny it - it will pull rank anyway. So it’s best to listen and go as respectfully as possible.

My sister (who also has CFS) and I often affectionately refer to our ‘tire-xiety’ - the anxiety attached to not knowing how you’re going to feel and whether you should go and socialise or if your body is going to let you down. At its worst, you find yourself collapsed on the couch weeping in a soft pant. And at its best, you say no to just enough things to help you regenerate.

Over the years of navigating this, I’ve found several things to help lift me out of this sleepy life:

• B12 shots
• Liquid zinc
• Compulsory naps on the weekend
• Freelancing or flexible work that lets me shift my hours around when things get bad
• Working four day weeks and adjusting my spending accordingly
• Cheap massages
• Heat packs
• Intentionally under planning my weekends
• Telling my boss
• Telling my friends
• Treating it like A Proper Thing
• Long walks and yoga over F45 and high-intensity workouts
• This lecture on CFS by doctor Rosamund Vallings
• Talking about it

But mostly, I have come to understand that life is the journey, but the body is the message. Ignoring it only gets you down. Honouring it can make life something else entirely.