Rebel

Migraine woke me. Animals woke up too. Now it’s 4am and I’m animal wrangling while in agony :/ Need more sleep very soon.

@OMGImAutisticAF “Why do you need a label?” Bc there is comfort in knowing you are a normal zebra, not a strange horse. Bc you can’t find community w other zebras if you don’t know you belong. And bc it is impossible for a zebra to be happy or healthy spending its life feeling like a failed horse

nothing is more exhausting than living every single day with symptoms that wear you down, all while forcing yourself to act like a fully functioning human so no one notices the struggle. mybodyistryingtokillme.com

Something has triggered a migraine. Damnit! I was ok till an hour ago. Weird.

Mouldy raspberries from Coles 🤢

Sadly I don’t even have the energy for the things I need to do, let alone something extra :(

I don’t have help or carers and I have a disabled son and a cat and a dog and a house to look after. No energy leftover for anything for myself unfortunately.

Trying to work out how I can have a life when I need to lie down 95% of the time.

It’s just so incredibly isolating. Family don’t care. Friends gave up. Can’t work or study. Hell, I can’t even shower.

Not sure what I do now. Do I just lie here until I die? It’s a little depressing. #SevereME

Just one month till daylight saving ends. I’m not ready for early darkness and cold.

My SAD will kick in again. The clocks changing seems to be a big trigger. It’s suddenly dark early and my brain goes into protest.

Mr22 is miserable in winter too, doubling the difficulty level. *sigh*

Managed to sit up a little today. Still in a crash, not walking around doing anything. Sitting a little was nice though :)

Black and white cat

Someone wants dinner

lol

Anyway, home alone for a bit. No idea how long. There may be a nap.

One thing I’m grateful for everyday is secure affordable housing.

Building the house almost killed me. After moving in I was the sickest I’d ever been.

It’s been a double edged sword. It both made me incredibly ill, and gave me secure housing.

At least I have secure housing to be sick in. lol

How many single mothers on benefits get interstate holidays?

I know someone that’s had two flying holidays in the last few months. She’s off to Queensland this weekend.

I’m a single mother on disability, and I’ve never had money for holidays. 20 years since I went away anywhere 🤷‍♀️

You need methane powered underwear

It took an hour of scrolling and hundreds of decisions, but the groceries are finally ordered.

Now my eyes, arm, and brain need to rest.

Still going with the ER marathon. Not that I’m concentrating on it, it’s more like background noise.

Still bored and wishing I could go clear out my bedroom.

It’s me!! I’m good between 20-25°C

4 pills

I take a picture of what I have taken. It records the time so I don’t have to remember.

My poor brain doesn’t have a chance of remembering by itself

Remember when you were so sick you couldn’t stand long enough to make food? When your limbs felt like wet concrete, your body begged to stay still, and every task felt like climbing a mountain you didn’t have the strength for? That’s the fatigue many chronically ill people carry quietly every single day. @dear_chronic_pain

@dear_chronic_pain on insta

Black and white cat

5am and spending a little quality time with the cat. Already slept for 5 hours. I always wake up for an hour in the early morning to take meds. The cat hears me and comes to get pats.

Seem to get a smashing headache on GLP-1 night. Usually improves the next day. Getting migraine vibes right now. I’m still on the ER marathon, just resting my eyes.

Its 10pm and my son is upset that the dog yelped at him when he approached her while she was resting.

He doesn’t think ‘Does the dog want to be disturbed right now?’

He just thinks ‘I want to pat the dog’. I’ve tried telling him again and again not to approach her when she’s resting 🤷‍♀️

Put a couple of pictures up tonight. Still working on my change of scenery. They’re old ones of mine that have been stored for years. Adding a little colour, one purple, one green, both pics of plants.

6 burnt butter biscuits/cookies

Close up of a biscuit/cookie

Cooling

2 hours alone coming up. I’ve baked cookies.

Tidied a tiny bit, but just moved something to my bedroom. The bedroom needs so much help.

Quilts need washing. There’s stuff to go up on the walls. Need to go through my wardrobe and give lots away.

Unless there’s some kind of miracle, I can’t do that stuff by myself :/ so frustrating.

Bored but zero energy. Desperately want to potter around tidying some clutter. Trying to resist. Absolutely loathe mess.

The mess needs to be cleared before I can move on to something I actually like to do. lol

i'd like to note, my body is a jerk, but i am awesome, we are 2 different people. right now we aren't on speaking terms.

This is what Australians with #MECFS are up against. Bad advice from RACGP.
www1.racgp.org.au/ajgp/2026/ma...