It’s a long weekend, and I’m again spending it alone, sick, exhausted and completely effing miserable. The last few months have been a giant turd burger. My mum, after more than two decades of refusing to go to the doctors despite much begging and pleading and schemes and emotional manipulation on my part, fell extremely ill and ended up in emergency surgery and in the ICU. She basically almost died of sepsis. When I got to Albury after a sprint down the Hume Highway she was connected to every machine under the sun, all of them ominously beeping.

Luckily she survived, thanks to the skill and care of the surgeon and the nurses, but just like when you don’t take your car to be serviced for ages, the mechanics found much more wrong. She now has quite advanced uterine cancer, too advanced for surgery. I took her to hospital in Melbourne last week where they did more tests and came up with a plan for radiation and chemo, which we are all hoping does what it is meant to do and blasts the cancer cells right out of there. But it is going to be a ride to say the least.

In the middle of this, her first grandchild and my little nephew was born, which was exciting and he is adorable. So that was the good thing. That’s the one big good thing which is making 2018 not a complete write-off.

I was also trying to complete executor duties on my uncle’s will, while my aunt (his sister, not his wife) bombarded me with angry Facebook messages about decisions he had made in it that I had absolutely nothing to do with.

And trying to manage my team at work, pass a rental inspection, be there for a friend who has been dealt an extremely massive turd burger in the past two years, continue basic life functions, chair panels and gave my first lecture. And trying to not fall in a crumbling heap with fatigue from old mate ME/CFS. Didn’t quite succeed on that one — the Melbourne trip wrecked me and I have been really sick since Tuesday with some kind of fatigue crash/hayfever combo. I have felt like absolute crap.

So I am glad it is a long weekend because I need the extra day (times a million), but I’m also alone, sick, exhausted and completely effing miserable. Not wanting to go back to work tomorrow, just wanting to hide.

In the face of all this stress and worry and extra trips back and forward to my hometown, I’ve been trying to deploy self-care. Cooking, sewing a bit, tending my plants, activities I enjoy. But I am still exhausted and over it all and unhappy.

And it just feels like the world right now is ganging up on me, as irrational as that may sound and as much as I try to tune out.

Everywhere I turn online or in the news there is misogyny. Politics is so deeply disappointing I am just having to shirk away. Everywhere there is people writing shit about how I should just positive think my way out of a debilitating chronic illness. And when you see an article or information that is accurate about something or shares people’s real, lived experiences, be prepared for the torrent of uninformed critique. This recent article about fat stigma being a perfect example – someone writes about fat people’s experiences, of which I share so many, the internet calls their lived experience into question in a vitriolic way — there’s many ME/CFS examples too.

And then there’s just the continued stigma, the continued roadblocks, the continued shittiness of dealing with a shitty illness that nobody cares about.

I was so relieved that in Melbourne at the hospital that mum’s illness was treated with legitimacy, professionalism, care and support. It shows up on a test, nobody is doubting it. The nurses and doctors were so wonderful and came across as being highly competent and motivated to treat it. She was offered every support under the sun (most of which she refused…).

But a small part of me was like ‘wow wouldn’t it be great if I had received even a tenth of this kind of care during my own illness situation’. It’s so frustrating seeing the way there are illnesses that we care about, and illnesses that we don’t. Illnesses we’ve bothered to find solutions for, and other ones we’ve just decided is crazy women shit.

Mum also kept mentioning my CFS in her nervous talking to doctors, especially about getting discharged early enough in the day for us to drive back, so I got to experience the fun of medical side-eye even when not seeking treatment. Also I’m watching her go through this knowing I have the same risk factors for uterine cancer – obesity and polycystic ovarian syndrome (PCOS). And I haven’t been able to do much about either of those thanks to ME/CFS. The latest suggestion (which is not new) is to go on optislim – ie to completely stop eating solid food. Fun fun. How long will the weight loss from that last when I can no longer deal with only drinking liquid instead of eating solid food? How long will it take until I plateau back like I do every single time I lose weight on some major restrictive diet effort – back to the same weight but just a little bit higher every time.

And even though it’s on the backburner, the career block stuff is also still getting to me a lot. As is the never-travelling-overseas, which people around me really seem to take for granted. People also make well-meaning suggestions about getting a job at a certain government department, and all I can think about it how frustrating it would be to work there and never be able to get a posting or to go on trips, because part-time people just don’t, and that’s where the career development opportunities are. And when I fall apart physically after a trip to Melbourne, my chances of convincing anyone that I’m up for an overseas work trip are zero.

I have a backlog of emails that I should look at before being bombarded when I get to the office on Tuesday, but I really am struggling to summon the energy. There’s a lot of great things about my job, but the university environment can be super frustrating to work within, particularly within the second-class-citizen tier of ‘professional staff’. And it feels like a PhD is just not financially achievable in my current situation.

So I’m just completely over many things.

I just need mum to get well.

And I probably need myself to get well too because I have no idea what to do with myself otherwise, but unfortunately there’s no treatments for my illness.

So basically beyond supporting mum as best I can, I still have absolutely no idea what to do with myself.

So 2018, you are being a giant turd burger, and I was holding out some hope for you. Sigh.