and this is also love

We are just coming off a very intense heat wave here in Australia, which was accompanied by a horrifying number of bushfires and destruction. Here in Victoria, many of the bushfires are still burning. The temperatures here at the Castle reached 45 Celsius, which was its own intensely scary thing. Thursday was the first extremely hot day, and I flared in the mid-afternoon, so badly that Rose had to wipe me down with ice water for about an hour before I stopped shaking, and then put me in a cool bath, which I stayed in for almost an hour and a half. (If you know me, you know this is VERY weird behavior for me because I generally refuse to get in bathtubs)

I had been staying in the main house since Monday evening, since it was getting to be too hot for me to be able to keep my camper cool enough to safely rest in. I’d already packed for myself for the week so that I wouldn’t need to go back out while the heat wave was here. After Thursday’s extreme heat, we decided that we needed to close off the big room that is the most difficult to keep cool, so on Friday morning I moved a lot of my things into the lounge and prepared to stay further in the house with everyone else during the swiftly approaching heat. I started to have another flare (a POTS flare this time, something different for funsies I guess), and Ash stayed with me while Rob and Rose finished closing up the great room and putting foil on the windows and hooking up the portable air conditioner that we moved from the great room.


this is also love: Ash is holding my hand while I am shaking and crying and embarrassed to be flaring again

I do not want to be sick. I do not want to be sick again. I do not want to be sinking into the furniture while it feels like gravity has increased inside my chest and is causing my heartbeat to hurt. I do not want to be crying as if I am helpless as a baby who cannot lift its own head yet. I do not want the damage that repeated flares are doing to my body. Ash is holding my hand, even though they don’t know how else to help me, but they are not leaving me alone in my fear and this is the thing I cling to.

this is also love: Rose is moving my computer and putting it all back together so that I can use it from the couch where I am resting

I am being gently and firmly and compassionately held in Rose’s heart-warmth. My computer–the CPU, the monitor, the power cord, the keyboard, the mouse–all are being handled with such care. Rose’s animism blooms outward in love for all things, including me, my computer, my favorite pillows, the blanket they gifted me for Yule so many years ago, the ice water fae uses to cool my skin when I am once again too hot. I am comforted by the care Rose shows me. I am buoyed up by the insistent love that Rose gives me.

this is also love: Rob is sleep-deprived and under so much stress and is hooking up the air conditioner and taping foil to the specific window pane that might let sunlight touch me

It is not that I am any more special than anyone else in our family. No, because I am exactly this special, and so are each of us. It is that when my beloved sees something that is harming one of us, and can act, fae will do as much as it is possible to do in those moments. As soon as Rob knows I have started flaring again, fae brings meds and puts them carefully, directly in my mouth, and then immediately starts moving the air conditioner into place and covering the windows. Actions speak louder than words: Rob’s words are some of the most beautiful things I can hope to hear, yet faer actions are even more beautiful to me.


I will not leave out my other partner; StarChild was in the house when I had a similar POTS flare a few weeks ago, and saw it happening before anyone else did, and did not leave me alone. I cannot express how lonely and scared I become in those moments when I am falling fast and nobody is around and I do not have the strength to call out for help. Sometimes, having someone there with me feels like the one thing standing between me and drifting away altogether. If someone is there, I can hang onto that energetically even if I cannot open my eyes or speak aloud.

When Rose had got me in the bath (well, I did get myself into the tub, but I definitely needed help getting there), Robert and his whole six-years-old self positioned himself on the bathroom floor with his phone and stayed there with me the whole time. He wouldn’t even leave the room to ask for a water refill, so I messaged the group chat to get it for him. He had his snacks and a few toys and was very protective of his Papa Nix while I was in there, my sweet boy.


my first post of the year was supposed to be a retrospective or a wrap-up or something; but it is a hot, hot summer here, and there are fascists shooting people in the face in the place I fled from

As the people of Gaza still starve and die and are being bombed and shot at and murdered again (STILL), another murderous criminal has bombed Venezuela and sanctioned every escalation of violence in the United States.

As trans people are being actively genocided in the place I fled from, the Stray Kids fandom is arguing about whether or not we should boycott the shows that are coming to the states and the movie that is also being shown in so-called “Israel,” and the only thing I want to scream is our public enjoyment of our fandoms is not–can NEVER be–more important than the safety of people under the boots and guns of a fascist police state.

So it’s been tricky to post a retrospective, you know? Because shit keeps happening, not just everyday gosh that’s annoying kind of shit, not the kind of shit you’d hope for right now; it’s genocide, it’s murder, it’s complicity, it’s climate change, it’s horrifying.

so. this is also love: sacrifice in the service of others.

Are you able to participate in a boycott, or sign a petition, or donate to a mutual aid fund? Then I think you should. I think it is your moral obligation. I think we are past the point of whether or not we feel like it, to be perfectly honest with you.

I am not asking disabled people to give up services or access to medications, groceries, food, or shelter. I am not asking anyone who is in danger of being scooped up and/or murdered by fascists to give up something that they need in order to survive. It is up to you to know yourself, and know what you can and cannot safely and reasonably do.

Love for others must include love for oneself. Harming yourself will do harm to us all.

We are all connected. Never forget that. Each person’s choices shape the reality we all live within, which I think is ABUNDANTLY clear right now.


I’m still a little too recently heat-flared to properly share some song lyrics with you, but I will try to give you two songs next time.

xox,
Nix

ten things: bitch what is going on

a collage of book pages covered in small print

You’d think that since I’m writing every day, that I’d be here more. NOPE. Everything I’m pouring out each morning is apparently only for me, because I’m processing a lot of shit right now.

cw: mentions of mental health challenges including suicidality; also spiders

one: writing

I’ve been writing on 750words.com off (mostly) and on (very very occasionally) since 2010, and I rediscovered it several weeks ago and I have been writing every day for the past 23 days. I am proud of myself. It’s not easy for me to have consistent routines, but I have been able to continuously prioritize it each day even though most of my days have revolved around helping care for our six-year-old. I’m proud of myself.

two: bleeding

I am pretty sure I have been experiencing PMDD for years, and the only reason I didn’t fully realize this is because having a menstrual cycle is extremely dysphoric for me, so I don’t associate anything with the word ‘period’ in it with myself. I don’t even like calling a menstrual cycle a ‘period’ because it feels like I am calling myself a girl if I use that word. Hell, I don’t even like calling it my menstrual cycle. I don’t want that thing, get it away from me.

Having irregular cycles has been my normal for the past eight or so years, and I keep hoping it’ll stop and just go away and never come back; but I have been in perimenopause for so many years now that either it’s going to be like this forever, or I’m close to the end. Maybe. I do finally have a referral for a specialist here that will be seeing me for ‘irregular periods,’ so that eventually I can go back on testosterone, but more important: please fucking help me with perimenopause, I am miserable.

It has been very common for (what I am accepting is) PMDD to manifest in me as ideation. I’m really fucking depressed most of the time, is what I’m saying. I am fucking struggling. I am having days where I have so many mood swings that I feel like I don’t know who the fuck I am. I am clinging by my fingernails to whatever scraps of sanity I feel I have in a given day, trying so hard to regulate my emotions all day until the sun goes down and I end up, inevitably, bawling about something and then being so upset with myself about it later. I’m trying very hard to be kind to myself. I’ve been honest with my family about how I’m feeling, although I still don’t recognize it when it’s happening about half the time.

I am doing my best. Hopefully next time I talk to my GP, I’ll remember that I need help with this too. Sometimes it’s all I can do to remember to ask for help for my MCAS, and that’s the thing that presents the most.

three: relationships

It feels like the start of a new relationship is the WORST possible time to have hormone problems and extra depression. THANK GOODNESS WE’RE BOTH FUCKED UP HAHAHAHA. Haha. *ahem*

I knew, logically, that a new relationship that is healthy and fulfilling in new and different ways from other healthy relationships I have, would open up stuff in me and shake things loose, but I didn’t realize how much shit was in there that’s been kicked to the back of the closet, metaphorically speaking. What I’m trying to say is that I have a girlfriend who is amazing and I’m a weepy bitch who just wants to write, work out, and cuddle, and is so fucking sad when either of us needs to go to bed early. It’s so ridiculous, y’all. I’m head over heels.

four: ranch dressing

Picture this: we1 are Americans who love ranch dressing, and now we live in Australia where there is no naturally occurring ranch dressing. IMAGINE THE HORROR.

Ash found a recipe that they tried once, and then I made it a few days ago, and we are mostly happy with it. It calls for pickle juice and buttermilk, both of which are definitely good and correct, but I think the type of pickle juice will be fun to experiment with. We both love bread & butter pickles, so that’s the pickle juice we have available (right out of the jar), and I wonder what dill pickle juice would do for the flavor instead.

We did finish all of the batch that I made, though. My favorite lunch right now (my autism safe food) is a chicken sandwich: it’s made with either two or three chicken tenders (depends on my appetite) which are prepared in the air fryer, and then put in a sandwich like so:

Then layer the chicken on and put the slices together and then into the panini press, but! with ranch dressing do this instead:

  • ranch dressing on both sides of the bread
  • Nando’s chilli jam on both sides
  • cheese on both sides
  • chicken tenders
  • more ranch dressing drizzled on the tenders

And then a little bowl of ranch to dip the sandwich in after it’s all toasty. Delectable.

Anyway, next time I want to try dill pickle juice, to see how it changes the flavor in an even more delicious way. Either way, I’m making more after today’s grocery trip.

five: spiders, man. fucking SPIDERS

It’s summer here, and when it’s very very hot it’s Spider Weather. Also, when it rains a lot, it’s also Spider Weather. It’s just almost always Spider Weather.

The other night, I walked out to my camper with my bedding–I’d had to sleep inside for several nights because we have been having a pretty intense heat wave–and I discovered a large huntsman spider just kind of casually sitting on my doorway; like, half over the doorframe, so it was just kind of looming; and because of the aforementioned depression and mood swings and also because it was dark and I wanted to go to bed, I fucking burst into tears and walked back to the house sniffling and crying, and slept inside again. Everyone else was already in bed and I did my best to emotionally regulate on my own but it took me about an hour.

I just didn’t want to argue with the spider over whether or not I could open the door and be inside without company. Too much emotional labor.

On another recent night, I was sitting on my bed when a big ol’ huntsman (Vincent identified it as a traveling huntsman) just hopped up from the floor somewhere and crawled into the alcove where I keep my books sometimes and started cleaning one of its front legs and I had to ask Vincent to come escort it out because (picture my crying face here, I’m very undignified). I just couldn’t.

I am extremely grateful for the fact that all the huntsman spiders on the farm seem to get no larger than about an open hand; so the body is never even as big as a fist, usually smaller than that. Really, they’re all legs. And if I saw them in places that weren’t startlingly much closer to me than I expected? I think I’d find them fascinating. They are very interesting, they are clearly intelligent, and I hate how we have to disagree over who lives in what space, honestly. I accidentally killed a baby huntsman a few nights ago when I was sweeping, because it was on the floor and I didn’t notice it until I was already doing the sweeping motion with the broom and that was the end of it. I’ve never seen such a tiny one before. (It was compared to other spiders not very tiny, it just seemed like it was because usually they are pretty large)

six: always leaving, always coming home

Last week, two of my kids flew to Bangkok again, and soon Rose will be home for Christmas. I have been doing laundry and anticipating many many hugs.

Vincent and Bee will be in Bangkok until early February, and if Vincent gives me the go-ahead to share anything about its trip this time, I will happily do so. Suffice it to say that I’m bummed I can’t go back yet, but I’m really glad that the two of them are able to do this right now.

And we’ve all missed Rose so much here. Robert has been without mum for more than three months and that is hard on a little guy. The nature of what we’re all doing together–our adventures as we gradually get on our way to Ireland, that is–means that we usually can’t all be in the same place at the same time. We are always shifting and re-adjusting and re-locating. Every time I get used to the way something is, it changes again. My autism HATES it. My ADHD loves it.

I am hoping that I can go back to Thailand myself, early next year, so that I can finally do the Thai language courses I’ve wanted to take. I have been wanting to do this since before I left Thailand in the autumn. I did not expect to fall in love with Thailand the way that I have; I thought I would try my best to be comfortable in Australia, and I would try really hard not to dislike Thailand, and just wait for Ireland; but I love it here in Australia, and I love Thailand so much. I think it is one of the best places I’ve ever been.

seven: library books

I have a library card. I have been borrowing and reading books. There is nothing so comforting and grounding as having gone halfway around the planet to find a library with books that I want to read.

I read Automatic Noodle (Annalee Newitz), Every Heart a Doorway (Seanan McGuire), and The Raven Tower (Ann Leckie) in the past several weeks, and I’m currently reading Polysecure (Jessica Fern), Harrow the Ninth (Tamsyn Muir), Care Work (Leah Lakshmi Piepzna-Samarasinha), The Empress of Salt and Fortune (Nghi Vo), and finally–I have resumed reading The Unreal and the Real: Selected Stories, Volume Two: Outer Space, Inner Lands (Ursula K. Le Guin).

I was reading The Unreal and the Real back in Michigan before I left, and had to return it only having read the first short story in that volume, “The Ones Who Walk Away From Omelas,” which is uncanny and sticks in the heart. It is a surreal experience to pick up the same book at a library in a new country, which looks almost exactly the same as the edition at the library in Jackson Michigan, down to the dust jacket and vague yellow tinge, and carry on reading it as if I’d just put it down for a little while, as if it’s the same physical copy.

eight: allergies

My new GP has given me a new prescription nasal spray, and recommended a new OTC antihistamine that I’ve been able to add to my regular day & night meds, because it’s very allergy season out here right now. I spent about a week waking up with migraines and feeling just generally horrible, and thankfully I had a doctor’s appointment to follow up on some labs I’d done and I was able to ask her for help with meds.

The nasal spray isn’t covered by the socialized medicine here, which is generally called the Pharmaceutical Benefits Scheme. The PBS covers all my prescriptions right now except that one, which means that when I go to the chemist to get a script refilled, it’s less than eight dollars to pay for it. Understandably, because I am American and even with the best health insurance I could get, it was not this good, I have been anywhere from shocked to upset to passively accepting this good fortune. So it does not bother me that the nasal spray, which is meant to last about three months, is about forty dollars (Australian dollars). ONE OF MY MEDS WAS ABOUT FIFTY UNITED STATES DOLLARS EVERY MONTH EVEN IN THAILAND WHERE IT IS QUITE INEXPENSIVE, I CAN MANAGE THIS WITHOUT EVEN BLINKING.

nine: outdoor kitties

There are stray cats here on the farm, which I think is pretty common here. In particular, there is a tabby ‘mama cat’ and two boy cats: a sad ginger man, and a nervous black-and-white fluffy guy. And recently she had babies, of which there are five, each one somehow cuter everyday than the day before.

We are putting out food and water for them, although we won’t name them and we don’t touch them at all, because we are hoping that we can take mama cat in soon and have her adopted (and now also the babies). She is very friendly to people and it seems like an indoor life would be so good for her. Although she might miss crouching on the driveway for a nap at half past midnight while her babies play in the grass, and scaring the shit out of me as I walk past to the house for the bathroom.

Along with the spiders, and the birds, I am also doing my best to be a good roommate to the stray cats. We haven’t named them except for using kennings to refer to them amongst ourselves, but we are always kind to them and we speak to them with the same gentleness and lilt as with our own indoor kitties.

ten: when I move my body, I feel better

It’s annoying that exercise really does improve my mental health. And no, I am not jogging or doing lots of hard heavy sweaty work. I’m not here to injure myself, I know better than that. Victoria (person formerly known as my mom) punished herself with exercise a lot while I was growing up, so I am extra aware of how easy it is to turn it on oneself and go too hard.

I am back on my every-other-day (realistically, three times a week) workout plan. I stretch in a careful non-harmful-to-my-EDS-body way, I do some various situps, I do some squats, I do some wall pushups, and then I have been working my way through the weight set that we have here in Australia. Previously I was using the metal barbell set in the house in Thailand, so after weeks of not doing any weights here, I’ve been re-learning how my body can manage weight lifting.

There is nothing quite like the inaudible humming vibration in my whole body when I am lifting an appropriate amount of weight for a non-harmful amount of time. It is a sweet, strong, wholehearted feeling that spreads into my mind and heart and tinges everything with a faint taste of goodness and rightness for a time. I wish I’d known this sooner, but I am glad to know it now.

I really thought this would be a throwaway post, something to write when I didn’t feel like I could say anything much

Sometimes I just need to start writing and my thoughts will unwind themselves into words. Not always, but often enough that it’s worth it to try again.

xox,
Nix


ephemera:

How come you fix me when I’m low?
But still you’re everything that kills me slow
This purgatory can’t go on
But once you’re dancing with the devil
It’s so hard to hate his song

Baby, you’re the antidote
Barely keeping me afloat
Glamorize, my demise
From riding on a rollercoaster
Even when the thrill is over
I’ll risk my life for you

(Up and down we go)
(Keep me hot and cold)
(Never let me take control)

Oh
Oh no
I lose all my composure
Looking for closure
Let go
But somehow you pull closer
(This game is torture)

Give me adrenaline
Then fill my heart with sin
Spinning in circles til my car crashes down your street
It’s no fun in the driver’s seat
Alone

How come you fix me when I’m low? (How come you fix me when I’m low)
But still you’re everything that kills me slow (Slowly caught in the middle)
This purgatory can’t go on
But once you’re dancing with the devil
It’s so hard to hate his song

— selections from Purgatory by Nico & Chelsea (from the album Purgatory)

featured image is a photo by Patrick Tomasso on Unsplash


  1. Ash and I ↩︎

heat {poem}

an image of the colors red and orange

I have had two three heat-related chronic illness flares in the past week. And it’s very difficult to explain what those are like, but I tried anyway.


it’s hot, I think
I can walk through the sunshine it’ll be
fine this time,
just a short walk
and I have my hat on
so long as I don’t need to
do anything else for
a while

I forgot to wear
my UV jacket with
the long sleeves,
it’s hanging up by my camper door
and I forgot anyway
it’ll be fine? I’m
fine I think

I sit at my desk
and my insides feel kind of
like I am about to
fold up in half, across
a pocket of weak dizzy
adrenaline-spiky orange swirly
energy
that’s
how I know I
flew too close to the sun

I have to go outside again
this time with my umbrella,
fuck it’s hotter out than a
little while ago,

I’m pretending I can walk in a straight
line, I am not going to
fall over it’s
probably fine? I’m
fine I think

back inside and the spiky
worry swirl of weakness is
spreading a little, dammit,
it was less than three minutes I think
I need to go to the toilet
there is a hot rectangle shape of
heat across
my forehead and this
is when I start to fall because
my heart rate is
dropping, so of course my
legs can’t support
whatever is
happening, I’m
fine I think I’m not fine
, I
have to sit down

why
are my words,,, so
unable
I am breathing too
fast but
tired
I can’t
say
anything
sleep,. rest, the cold
floor like
it’s how the floor holds
you when you”re
sick, am
I sick/? right, yes
just
breathing, not die just right now
how silly
crying? why what is the
ppoint what does
this do
maybe its a crash or
why can”t I think

I forgot
I forgot to take a rescue med
where is my water bottle?
it’s not that hot,,, I’m
probably fine now, I’m
not fine it’s okay don’t worry about me
sorry sorry please don’t worry but also
help, I feel
sick and stupid and
I am trapped in my own head
and my own body
it’s too
hot today


featured images is a photo by Alexander Grey on Unsplash