“Do you know how it feels to crave a body made of steel?” Lauren Aquilina, Irrelevant

It’s been over a week since I last posted. It has really just been the same shit, different week. I still have pain and discomfort in my ears from when the doctor examined them with his instrument. It has not improved at all, which is depressing. I worry I will take this to the grave with me. He gave me some ear drops which I found out contains antibiotics and an anti-inflammatory, cortisteroid drug. I haven’t tried it yet as I’m scared to put anything else in my ears after this experience, but I’m getting desperate. He said it didn’t look like an infection so I’m not sure why he’s given me ear drops containing antibiotics. I don’t want to take antibiotics for an infection I don’t even have. I will be seeing him again tomorrow and asking for some ear drops which only contain the cortisteroids. Cortisteroids is something my friend, who has a similar health condition, was suggesting too.

I’ve been recording my sleep, eating, mood, and whether I practiced mindfulness for my physiotherapist, up until the past few days. When my alarm didn’t go off and I slept through our appointment last Friday, I gave up journaling as I was too discouraged and couldn’t be stuffed anymore. There is already enough for him to read to get a picture of the shit show my life is. My baseline mood is extremely low, and it has been this way for so long that I’ve forgotten what it’s like to have a normal mood, if I ever had one in the first place. If I reach a 5/10 that is a fantastic day for me. Every day my mood sinks to a 0, 1 or 2 and I am distressed. There are days, however, where it jumps up to a 7, and this happens in the same day it’s been a 1. I can be manic and suicidal in the very same day and even at once (this is actually a thing called a “mixed mood state”). I usually get my “highs” at night where I become angry, reckless and a different person. Sometimes they are a reaction to the unbearable pain and distress I’m in. It’s like this other personality takes over. Below is how I described my mood last Monday.

In case the picture’s not readable, it says “Mood: 7 and 1, reckless, party mood, distressed. Sort of this flip into mania or something at night which covered up how utterly miserable I felt deep down. Have a night time and a day time personality. Rapid mood shifts. Suicidal thoughts. Anger.”

As you can see, it is all over the place. I texted my friend, who suffers from a similar physical affliction, all day. He said he’d rather get stabbed than cut his nails, and has to use numbing cream to make it more bearable. He also has a lot of environmental sensitivities, and has reached a point where he can’t even wear a tshirt as it collects chemicals and toxins from the environment which then gives him rashes and dizziness. I sent him a picture of myself lying on the ground with two packs of frozen vegetables covering my ears. I didn’t care if I had to live my life in a vegetative state, as long as I got some relief. My mood started to pick up, and that night I tried to recruit all these friends to have a party at a park in the dead of night. It ended up just being my friend who I texted all day and me. He arrived at 12:45am. My dad is kinda used to him coming over at the weirdest hours, using our kitchen and stealing a banana from the fruit bowl. We sat in my car chatting for a while. Then we drove to the park around 2am. We pulled into the long dirt driveway laughing so hard as the car crunched down the road, the only sound there. He thought I was gonna get us killed and the last thing his horrid mother said to him was when she yelled at him because she didn’t like the smell of his instant noodles in the kitchen. When we got out of the car we found it had cooled down quite a bit so we went back home to get jackets. Then we returned. Unfortunately my friend had a reaction to my jacket, but he put up with it. We jumped in the lake and swam under the clear sky, stars sprinkled like glitter on a black canvas. I felt a lump in my chest as I was reminded of the time I was there with my disability support worker and tried to drown myself, which led him to call 000. I really missed him; I haven’t heard from him since early Dec last year and have no idea if he’s back at work or what. He probably never wants to see me again. On the way back from the lake I tripped over, nearly fell back into the lake, and I injured my hand. Thankfully I think it will be ok. My friend and I listened to Korn, Slipknot and Limp Bizkit’s angry song “Break stuff“. I drove us to a Pancake Parlour at 5am to have a meal, something which would usually make me extremely anxious as I have never driven there before. But I feel a lot more confident driving at night when there’s no one on the road. I became a bit of a hoon, speeding and revving up the mountain, which my friend found pretty funny. As the sun rose and there were more cars on the road, my driving style completely changed. I hunched over the steering wheel and because a cautious driver again. My night time vs day time switches is something also described by Jacqueline Valladares. She talks about “night fever” being a youth thing, or something experienced by the youthfully minded.

I didn’t fall asleep until 8am and when I woke up I was so sick! It was like I was hung over, but I hadn’t even been drinking. I was bed bound most of the day, but not able to get any rest. I had a headache, my jaw was super tense, I was nauseous so had a bucket next to my bed in case I vomited, I was breathless, hot and cold, still heard that fucking mosquito noise and my ear pain was still there. I started drifting off that evening and felt like I was dying. I took some nurofen but it didn’t do much. I was very sick but I knew it wasn’t always this bad so it didn’t bother me too much. I think we can get through most things when we can see an end in sight. It’s my ear pain which is what’s really tormenting me still. It’s the things that are milder but never go away, like the way water is not as hard as rock, yet it will wear away rock, making it much stronger. I actually prefer the severe pain I get with my period as it passes pretty quickly and responds to strong painkillers, unlike my ear pain and discomfort.

I felt completely overwhelmed. All my etsy orders were banking up and I was expecting etsy to start harassing me, telling me if I don’t get on top of my orders then I would be penalised. It’s so fucked up. I’m a disabled artist and I sell products that raise awareness about mental health and chronic illness. There isn’t even an option to speak with a human being on etsy and tell them my situation. It’s run by robots. It’s hardly worth having a store. I really don’t earn much, especially after all the fees etsy charges. Then there’s the stress of having to prepare and post items when I’m so sick. I am constantly losing things and it’s a nightmare getting everything together. I don’t run my business for the money, I do it because it’s something I would normally enjoy if I wasn’t so sick and depressed, and because people appreciate my badges, even bothering to leave positive reviews and send me messages saying they love them. 

My sleep has become completely erratic. On Tuesday, the day I after I saw my friend, I only slept three hours, from midday to 3pm. According to my journal, that night I was up all night writing emails, which my physiotherapist knows all about. I used to bomb his inbox with the craziest shit such as hospitals actually being mind control centres. He was probably wondering why the fuck was he receiving all this. He just deals with joints, muscles and bones. He was a bit rude about it, telling me responding to my emails was taking time away from his family and I needed to find another way to deal with things. He also said he gets notifications whenever someone sends him an email, which I think is a pretty stupid set up. He said I could only email him during business hours, which I usually sleep through. So I moved onto my next victim: my psychotherapist. I went on about all sorts, from vaccines and school being mass programming, to adult babies and my many different personalities. It was like I was drunk. My Stich jumpsuit arrived. I put it on and took some photos. The child in me wanted to go on that fucking awful site “fetlife” and post them but I stopped her. I keep telling her to stay away from that site, they’re all jerks and don’t care about her or any part of me really. I have opened up about my mental health only to be unfriended or ignored because people don’t want damaged goods and I am too honest and real for them. There is a man on there who just uses us whenever it suits him, it seems. He disappeared on us for a year after I told him I had overdosed, and has been shopping around for other little girls. Then randomly over Christmas he sent me a message. And so I went on there and asked him where he’d been and whether I am too crazy for him. Does he honestly expect me to have such little self-worth that I act like nothing happened and will trust such a vulnerable part of me with someone who will just dump her whenever it suits? Apparently he has a kid’s “playroom” in Box Hill. He seems to be less sex obsessed than the others on that site, but I still don’t think it’s a good idea to meet in private. I got an email saying he’s replied to my message, but I haven’t felt like reading his reply. It was originally more a mother figure I was looking for, anyway.

Dissociation has become my latest special interest. I know I dissociate but I’m not sure to what extent. I often wish I dissociated more than I do. I watched a great program 7 News did about DID which is available on YouTube here. It is one of the best portrayals of DID I’ve seen, and the interviewee is lucky to have a partner who is bisexual and loves all of them.

On Wed the 22nd I slept from 5am to 2:30pm, with the help of 10mg of diazepam, an anti-anxiety med. Something was off from the minute I woke up. “Papercut” by Linkin Park could have been Wednesday’s anthem.

“Why does it feel like night today?
Something in here’s not right today
Why am I so uptight today?
Paranoia’s all I got left
I don’t know what stressed me first
Or how the pressure was fed
But I know just what it feels like
To have a voice in the back of my head”

My gut felt like a chemical cocktail. I think I was so anxious when I woke up as I didn’t want to face another day like this, tortured by my ear pain and many other enduring ailments. I couldn’t live like this. I wanted to sleep more so took another 10mg of diazepam and moved into the other room where I sleep inside an insulated box to block the neighbour’s noise. I slept from 3pm to 6:30pm. I dreamt that I texted Betty again, as though the relationship wasn’t over. I dreamt about a creepy, narcissistic guy I knew a few years ago. I dreamt about cults and sex. When I woke up I was sick and breathless, probably from shutting the sliding double glazed door to the bed box which stopped air from coming in. My anxiety was still bad, which escalated into panic and psychosis. I felt scared, suffocated by the world and totally overwhelmed. I couldn’t be around people. I fled in my car to get away and wrote some crazy texts to my psychotherapist.

I ended up driving up the mountain and watching the stars at night while lying between some trees. I asked my star family (aliens) to show themselves to me and take me home. I saw a comet and several specks of light gliding across the sky. I wasn’t sure if they were satellites or UFOs. I was still scared as random cars arrived at the carpark and I was all alone out there. I expect the worst of everyone. The night reminded me of “Paranoia” by A Day To Remember. I since tracked my menstrual cycle and found that Wednesday was the beginning of ovulation. I think I have some kind of hormone problem/sensitivity as I am noticing a pattern when I map my periods. Whenever I end up in hospital for a mental health crisis, I always seem to get my period. I find all my emotional issues get even worse leading up to my period, and now it seems ovulation knocks me around as well. It would be so much easier if I was a guy.

I calmed down and did a late night shop at the supermarket. I started to panic again when the store announced it would be closing in 5 minutes and I couldn’t find the spring rolls I had gone there for. I wondered if spirits or something moves things just to mess with me. Finally I found them and I returned home around midnight. I had a shower as I smelt funky; I think I lay in animal piss or poo while at the park. I decided that night I would turn this downward spiral around and have an earlier night. But then another side of me kicked up a fuss. My mood took another dramatic turn. I felt reckless and angry again. I ended up laughing and dancing around the bathroom to Limp Bizkit’s “Hot Dog” and other songs. My friend told me Limp is vegan.

“I didn’t know he was vegan,” I said. “Now I guess I see that song in new light… He’s probably angry about hot dogs.”

Limp Bizkit morphed into gay bands, like the changing patterns of a kaleidoscope. I listened to Tegan and Sara, and discovered a new Russian band called t.A.T.u. “Not Gonna Get Us” reminded me of the times I’ve fled the hospital and compulsory orders. My friend was often my partner in crime. The band did the coolest version to one of my favourite songs, “How Soon Is Now”. I got the impression the two girls were gay as well, but after doing some research apparently they are not. They are even homophobic, according to Dani Leever . “For a generation of young queer people, their legacy is one of confusion and betrayal,” Dani writes. I find it hard to comprehend that it was all staged. I have wondered whether the Russian government made them say they weren’t gay and in love. The topic is debated on reddit. 

That day I reported my mood as “About a 7 at night. Dancing, reckless, angry. Then dropped to a 1. Then later at night picked up to a 7 again, wanted to go nightclubbing. Extremely suicidal. Uninhibited. Angry. Want to cry. Want to scream.” I was upset about the $1000 phone I’d lost. It was delivered to my mum’s house. I visited her but didn’t remember bringing the phone back. I looked everywhere for it. I looked at my mum’s house. I looked at my dad’s. I scavenged through bags, cupboards, boxes of my stuff my dad moved off the table tennis table and dumped in the only room that has some floorspace left. I went through my car. I lost more things in the process like my bracelet. I concluded I must have left the phone at my mum’s house in the wrapping and my mum threw it out thinking it was rubbish. But I finally found it the other night lying on the floor wrapped in bubble wrap. My memory is shocking. My head is full of wrackspurts, as Luna Lovegood would say. 

Thursday the 23rd was my last journal entry. I fell asleep around 4am with the last of my sleeping pills which are hard to get as the government monitors the drug. I then woke up to my neighbour’s bloody electric leaf blower again around 9:30am. I reached breaking point; I went out and screamed and cried in front of them. The woman had no idea why I was so upset.

“I am sick and need to sleep during the day and can’t handle that noise,” I wrote to her.

She seemed understanding. She said she didn’t know it bothered and woke me. She walked me back to my house and asked if I slept during the day every day. I nodded. I then took 10mg of diazepam and 10mg of olanzapine to knock myself out. I slept from about 11am until 7:30pm. I thought the neighbours would be more respectful, but two days later they were back out on a motorised buggy and then with the electric leaf blower because they are too lazy to use a broom. I don’t get it; it’s not even autumn. Again this was during the morning, though I happened to have woken up early. I was still pretty pissed. I wondered if they were doing it on purpose just to provoke me. They are obviously assholes. I want to throw a Bluetooth speaker onto their roof in a weather proof bag and blast “People = Shit” by Slipknot at night from my house. See how they like to be woken. I feel yuck being so close to them.

I’ve started taking PEA (palmitoylethanolamide) which is used to treat pain and inflammation. Apparently it can also help with sleep. I have found since starting it I am getting a bit more sleep at night. As for the pain in my ears, I haven’t noticed a difference, though apparently it takes a few weeks to several months for pain to improve.

I will finish this post with something more positive for once. Sometimes when I sleep I dream of mythical beings. A few years ago I saw a girl with short blonde hair which curled up at the ends, a bit like my blonde hair when I was a kid. She wasn’t wearing any clothes and was wading in the most tranquil river with crystal clear water. It reminds me of the rivers in the mountains of Lemuria. I believe she is a xana, a female creature of extraordinary beauty who lives in fountains, rivers, waterfalls or forested regions with pure water. Then on Saturday night I dreamt of Meredith, the mythic flute player with blue hair! She makes people cry with her music. She didn’t originally tell me her name, but when I woke up the name Meredith came to me. I looked it up and found out it means “great ruler”. I then looked up the spiritual meaning of flutes. The flute has been associated with many cultures’ gods. So it all made sense. Meredith is a goddess. We got to hang out after she played the flute, but I don’t think she was all that interested in me. She is way too cool for me. She goes into a trance when she plays the flute, but when she’s not playing she’s like a normal human being.

On Sunday I wore a white macrame rope dress I bought from a woman from Ukraine who makes them herself. People told me I looked great. I think I glowed differently from my dream. Meredith was still inside of me. I took these photos trying to re-create her.