I’ve been having an interesting time inside my head these last 15 months trying to wrangle all the scary thoughts about fatigue and adjust to this much-altered lifestyle. The hardest thing I’ve had to do is accept that I can’t do everything my “old self” or “healthy self” could do, and that sucks. And I don’t mean just the full load of a normal high functioning 27-year-old, I mean the basic stuff like driving my car for longer than half an hour or standing up for long enough in the shower to wash my hair (god bless dry shampoo).

I enjoy using my brain and I have studied a lot as I like the feeling of learning new things – crazy girl – so, along with working in publishing I was halfway through a Masters of Communication when this fatigue business started. Before I’d even resigned from my job I very quickly took a leave of absence from uni – even the conversation on the phone with the admin department about this was exhausting so I wasn’t going to be doing classes. Then I got a lot better over summer and thought ok, I could probably do an online subject or two, this would keep my brain engaged, I used to do one subject while working full time, two onlines while doing nothing else should be ok, good good. I thought I would be ok; I’d just go slow, no pressure to get good marks, just get the subjects done; a tick on my transcript. But this girl who used to write for three hours straight at work (and in previous undergrad life) had to write for 20 minutes then take a break, then another 20, then take a break, and only on a good day. So one assignment of 1500 words took all week to prepare, all day to type up and then two days to recover from. As I slumped in front of the computer it appeared that two online uni subjects were two too many… This semester I am doing nothing, hence my blogging presence.

No graduating this year… wait, who am I kidding I’m not going to one of those boring ceremonies again! Blogging is way more fun.

Then there’s exercise as I wrote about in my last blog. Ok, got fatigue, won’t be playing lacrosse, I can accept that; I may not like it but I accept it. But the other day I was at the myotherapist – having the knots in my non-active muscles destroyed – and she asked if I stretch before I walk. No, I thought, of course I don’t, I’m only walking! Now, having played sport all my life I understand the value of stretching before and after a run or before and after a game of netball but to walk down the road? Well, when your muscles fatigue as quickly as mine do, and are as sensitive as mine are, then yes, you probably should stretch, better make a mental note of that.

I’ve accepted that I can’t sit at a desk all day working as my body doesn’t like being stuck in one position and I can’t use my brain for that long, and I’d leave drool marks on the keyboard as I passed out, but I can’t quite accept that simply standing up and concentrating is a tiring thing… The other day I was making caramel at the stove and was keeping a careful watch on it as I’m a bit of a perfectionist when it comes to baking (and, you know, the rest of my life). This was probably a 15-minute process, with constant stirring, a bent-over posture so I could see to make sure it didn’t burn or become lumpy. I made beautiful smooth caramel that I poured on to a slice base and slid in to the fridge. Then I sat on the kitchen floor and realised I couldn’t get up. The act of making caramel was just too much! Now I know that it probably wasn’t just making caramel, it was more likely the act of making caramel after doing too much earlier in the day, but I am wary of post-baking fatigue and now assess my energy levels before I get out my ingredients.

Baking fatigue… jelly slice in progress, caramel slice in progress and obligatory caffeine to keep me going…

There is a positive in all this, in that I am definitely more appreciative of things in my life. No I don’t have a career right now, but I have great relationships with my family and my friends, I’ve realised just how much I love being creative (blogging/photos/baking/writing) and how much I hate being stressed like I was in my job. No, I can’t always involve myself in things the way I’d like to but when my dad’s business has a rowing crew in the charity regatta in Geelong I can go along and cheer and enjoy the sun and bump in to friends and have a lovely day; yes, I’d prefer to be in the boat, but being on the banks of the river is ok. It’s just when I am exhausted from doing the lesser option, the small amount of exertion, the things anyone should be able to do that I just want to break something and scream ‘this isn’t fair’. Come on, I want to say, I just stood on the banks, I didn’t row, I was good, what else do you want from me? Why am I so wrecked? Thankfully this usually passes and I come out the other side back in balance. Because I know I’ve only got limited energy reserves, and being an angry wronged-by-the-world girl is just plain exhausting.

I was good and didn’t row (like this shot in summer 2013), I stood on the bank, what else do you want from me?

When I’ve met other people who’ve experienced health problems like mine I have had the most amazing conversations with them. Not in a bitter, woe-are-us kind of way, but with a sense of solidarity. The best conversation I had was with my dad’s friend Kevin, a farmer in his 40s who was recovering from a heart attack. I didn’t expect us to have such a deep and insightful chat about how we take our health for granted, how we assume things such as “young people don’t get sick”, “only old people get heart attacks”, how nobody quite gets it until they’ve been there, how tricky it is not to push yourself too hard and how amazing it is to walk a kilometre and feel fine the next day – yippee no relapse! Here’s looking forward to more good days like those.

Solidarity from others and comfort from my doggy; two essential ingredients for combatting fatigue