This year has been pretty hectic. Big staff changes at work, covering various responsibilities and always having new ones land on my plate, mum being sick, BUYING an apartment which was definitely not in the 2019 plan, moving offices twice and house once.

But I was feeling pretty good about how I was managing, despite old mate ME/CFS always in the background. I had survived all this stuff. Mum was doing better. I was drilling holes in my walls and painting them. I love my place. I had manoeuvred a disaster (being evicted) into a win (getting a mortgage when rates are super low) and knew my uncle would be proud of what I had done with the funds he left me when he passed. I had been overseas TWICE this year. Go me. I was high-level adulting all over the place, despite still being sick and exhausted much of the time. I was even going to the dentist after neglecting to do so for about four years. High level adulting, people!!!

I did start to notice in September I was getting a little run down though and very much over work, so I booked in a Melbourne getaway in October and a Queensland mini break for November.

Unfortunately, in the time between actually realising I needed a break and going on the planned breaks I really hit burnout. For someone with chronic fatigue I guess burnout and the symptoms of the illness itself seem pretty similar, but there’s one fundamental difference – CFS never affects my motivation to do things, just my ability. Burnout is when it becomes a struggle to get work done because your motivation has gone kaput and you just want to watch Netflix instead.

A couple of days before I went to Melbourne I skipped a medication for just one day (I hadn’t got to the pharmacy in time) and ended up sick and extremely dizzy, and felt off for days. It was all my old symptoms from the CFS early days, back to remind me of my weaknesses.

I went to Melbourne and had some fun times with friends, but probably overdid it a bit considering I was already burnt out and exhausted. When I got home, I was sore all over from fatigue. I sat down on the couch, and when I next tried to get up…. scream, I had pulled a muscle in my back and it *)#($@*^ hurt. For the next few days I could barely get up or even roll over in bed without things to pull and grab on to help, the pain was so bad and all my muscles were completely seized up. I had to use a walking stick for a while, and weeks later my back is still sore even though I’ve tried massage, stretches and all manner of balms (which I keep accidentally getting in sensitive places like my eyes because things in general are just not going well for me). I’m trying to find a physio but they seem to all think CFS can be fixed by exercise (which the science disproves now) and are very often fatphobic. Super sportsy people kind of scare and intimidate me now…. and I’ve had so many traumatic/horrible experiences with practitioners before.

Since all this happened my high level adulting is falling apart and I feel like a mess. I’m sad, tired, in pain and the frustration with certain things at work, particularly those issues where I take on the role of broken record and feel ignored, is at boiling point. I’m not sure what to do with myself — I went back to full time work earlier this year because I was mad about doing unpaid overtime when part-time, but now I am not sure if it is sustainable to be full-time. But who else is going to do the work so that I can be proper part-time? Also, you know, money is useful, and it’s always a trade off between the two. Earn more money, pay for more conveniences, y’know?

So I’m trying to regroup, and hoping there’s no regression on my back and muscle problems before I head to Queensland next week. I’ve booked a little camper and am planning to head down from Brisbane to Byron Bay, getting some nature and some space to think. The trip (not by luck but by design) coincides with my fifth anniversary of having CFS. Pretty much once you have had it for five years your chances of ever recovering are nada, so it is part distraction. When I planned the trip part of me was thinking I should celebrate the things I have managed to do despite this massive spanner in the works, which I feel people often don’t recognise and perhaps even I don’t recognise enough. But now I’m in a funk so I might aim for more distraction than dwelling on it. So many symptoms have arrived to celebrate the five year sickiversary, yay? Hopefully they don’t join me for the road trip to Byron Bay and I can catch a break.