It Comes Back

The thing about depression is that no matter how much work you put in, how far you come, it will come back.

I’ve felt it sucking at me again these past days. Felt it dragging at the corners of my mind. I woke up today and there it was. I am also in the grip of a Fibro flare. For those lucky enough not to know what that is, it basically means my entire body is in pain for no damn reason. Are they connected? Hell yeah.

Depression is a little parasite. She waits for something else to bring me down and there she is. Right on my life line, sucking all the feelings away.

Until I am not happy, or sad. I’m back in the grey wasteland of nothing. Everything is leached of joy. I am flattened. I am nothing. But I refuse. Im in a desert leached of all emotion. But I ain’t stuck here.

So I go to work. This is my job after all, keeping the Bonnie Bot alive. I watch my favourite shows. I reach out to my friends who get it. I tell husband. I get good with being sick. I do the things I like doing. I go through the motions. In my case, if I succumb and just lie down, I will get worse.

I start being kind to myself. I bring my best self talk forward. C’mon Bon, you know the drill. Are you safe? Do you need help? Is this manageable?

I take steps. If I want to get better I have to fight for it. I feed my face with good food. Listen to good music. Do things that make me feel… something. Hide the sharps. Put the razors away. Bury my face in my dogs neck and just hold on.

This is the price I pay to be me. My brain gives me creativity, it makes me different, intuitive, imaginative. And sometimes, it tries to kill me. Everything is a balance I guess. I still like being me. But the tax is bitch.

So I will hang on. I will hug my children and breathe them in. I will rest my head on husband’s shoulder. I will wait for it to pass. Hold on Bon, just hold on. Wait for the times to get better. Have faith that they will.

I will stay. I will not let this be the end of me. Because brain, you dear, fucked up mess, the times they are a changing. My smile will come back before you kill me. Just watch.

Stay weird peeps. Just stay.

X Bon

I Lied and said I was Ok.

If I ever let you think this was easy, I lied.

If you look at me and think I won the war against depression, I lied.

If I gave you the impression that I’m ok, then I said it wrong. Because every morning anxiety still pries my eyes open, while depression wants them to close.

Walking into any room, any time makes my heart thud so hard I want to turn and run. It does not matter if that room is filled with loved ones or strangers. I want to run away, and I’ll feel good doing it. I like it better when I’m on my own, but I hate feeling alone. I need the people in my life so much that if they realized exactly how much, it would shock them. The people I love are my anchor. They keep me here. They make me want to stay. So if I tell you I can do this on my own, I’m lying.

BPD still wrestles with me, every day is hard. If you think I’m not holding a clamped hand over its mouth, just to hear you speak, then I’m telling it wrong. I’m straining against the claws of a monster just to make it through the day. Some days I lose. Some days it forces me to watch the world pass like everyone got a pretty invitation to stand in the sunshine, while I’m stuck behind the glass and can’t feel it’s warmth.

Some days are good days. I’m starting to be able to string more than one together at a time. I was starting to rock through an entire week…

Then Fibro came along to add her 5 cents worth to the whole mess. She is the fiercest dictator I’ve washed up against so far. She tortures so invisibly that no one can see the scars. She’s an expert in making you forget she’s got her chains around me every minute. She hides in plain sight. She sees my good days and she laughs while she takes my feet from under me.

I didn’t chose to fight these battles. I’m no angel through it all. I can be so cruel it would suck your breath out. I’m so angry I’ll scream at the sky when I run out of things to be mad about. Resentment is my poison. It shows on my face, in the holes punched through plaster, in the burned bridges I leave in my wake. It could be so much fucking worse, but that doesn’t help me on the days I want to bash my head against a wall just to make it all stop.

The damndest thing keeps happening though. I keep feeling my lips curling up at the corners, my feet keep tapping, my heart bangs and I rise again. I tell my wrong brain to shut the fuck up and carry on. I’m learning to walk without limping as Fibro rattles through my central nervous system. I tell depression to shove it, even when anxiety puts a tremor in my voice. I turn the key in the ignition with shaking hands. I keep on going.

Recovery looks different for everyone. And it’s not fixed. It changes as I do. It’s a god damned bloody spectrum, and I’ve learned to be ok with that. But if I ever told you I was ok, that it was easy, then I bloody lied. I didn’t tell my story right.

I don’t want anyone to stumble across my blog and go well look at that, we can be fixed. Because we can’t. But we CAN manage life with all this nonsense. A good life even. I can never go back to the person I was ‘before’. I can be happy. I’m facing forward with anticipation for the first time in years. But let’s none of us pretend ‘happy’ is an attainable, fixed state. Cos that simply isn’t how life works. Adjust expectations, get comfy with the new version, make peace with it. When you look at me, know how much I’ve had to fight just to be stood there, looking right back at you.

My smile is real. That part I never lied about. This world might force me to my knees more often than I’d like, but I still have no poker face. The laugh is honest, the grin pure me. My strongest feature isn’t something I expected. I thought my weapon would be humour. It’s not. The force that keeps me going is pure, bull headed stubbornness. I’m a sore loser, so whenever my ailments think they’ve got me, I’ll up-end the game board right in their face and walk on.

Every time something comes along and tells me it’s going to take something away from me, I get up and fight to take it back. I’m that plucky little kid in the school yard. You’re watching her drag herself up off the gravel, nose bleeding, to turn around and spit on her bullies. Just when you think she hasn’t got it in her, she throws sand in their eyes and runs away. I didn’t know I had this much fight in me. I’m not a brave person. I fold like a piece of paper. I hate confrontation. And it’s not because I don’t want to argue over my change, or send a crappy meal back to the chef. It’s because I’m already tired of fighting.

The point of all this work, this endless battle? I found something to fight for. I didn’t know that. I thought I had nothing left to lose. Apparently even in my rawest, most flawed moments, I won’t lose my grip on the world. I lift my bowed head, scream FUCK YOU at roaring volumes and I stay. Every blow I expect to be the last straw… somehow isn’t.

This is mine. My ruined mind and broken body. It’s Mine. This life I live is Mine. The things I seek are Mine. The people I love are somehow Mine too. So maybe I’m not that brave little girl wrestling with her bullies. Maybe I’ve had enough. Maybe I’m also that stubborn, tantrum chucking little shit in the supermarket. Jumping up and down, turning heads, shamelessly screaming MINE, MINE, MINE!

So yeah, I lied. I let you think I wasn’t completely broken by all of this. I showed you the days I found my reason to stay alive, and I hid under the covers on the days when I couldn’t. Some days I rally do want it all to stop.

And yet.

The world keeps spinning, and I keep spinning with it. I will fight, fall down, get up and do it all again. One day if you look over your shoulder and I’m not there, at least you will know that I never give up. I gave until I had nothing left. I fought for every day I had here. I tried.

Stay weird peeps, stay here.

X Bon

Get up girl

So I had a massively awesome weekend.

A friend was flying to Sydney, stopping off in Orange for fuel. And he offered us a lift. Do we want to scoop up the kids and zip off to Orange to visit the fam? Um, yes obviously let’s do that!

It was very very worth it. My first time in a small plane and all the awesomeness that is flying at 400 k’s, 10,000 feet up. You feel every wing shift and can see the ground the whole time – AMAZING!

Spent time with cousins I hardly get to see, the kids had a ball and I got plenty of bubba cuddles in. I am one happy lady.

Downside of awesomeness? My body will always ask me to pay for it. I have to learn to accept the pay off for doing anything that uses a lot of brain power and physical doing.

Today my eyes won’t work properly, because like all my other muscles they are freakin tired. Imagine that all your muscles, nerves and even your skin were just fucking done with today. Now tell yourself to get up and go. You’re basically suffering from body wide, intense flu symptoms and you’ve just told the old body unit that it needs to put in a full day at Uni today. Body and mind are gonna have an argument about that for sure.

I know I’ll pay for it later. I know all the self care options are sitting at home in a tool box I rejected today. I know I’m facing an 8 hour day armed with stubbornness, headphones and a kick arse playlist. It’s not enough, but I can get by until my pre-planned day off. I hope. I will hang on by my fingertips until my day off and hand out gold stars all the way.

Until then, I will dance this broken body of mine to school. I’ll be grateful I can do it. I will thank this poor old bod of mine for rising when she didn’t want to. I’ll treat myself to a bath at the end of the week. I’ll keep up my meds and check in for a physio sesh. I’ll do all the back ground blah blah blah it takes to face up to each day. Because as much as I argue and roar and cry and scream with frustration sometimes, I’m still here. My body still works. My brain is firing on most cylinders most days. What more can I ask for? It’s a bad day, but I’ve had worse.

So this week I know I’m asking a lot. I know there’s a physical list of consequences, some I’m getting ready for. Some might be a surprise package. I’m borrowing from Peter to pay Paul, but I just really want to be here. It matters to me.

So Fibro, with respect, please back the fuck up and just let me have three days. Three days, and then you can kick my arse for four.

As always for me… when in doubt – dance. Get em headphones on and boogie my arse into the car.

I can.

Or I can’t.

But I’ll still try.

Stay weird peeps,

X Bon

Down and Up

It’s been a rough week. Fibro is kicking my butt cos apparently it hates any sort of weather change… and it chucks the biggest tantrum if that weather change is Winter!

But it’s been good to go down. Because then I know I can and I WILL come back up again. Even if it’s tough and really sucky and it makes me literally cry… I have to know I will come out of it.

This is not going to be a long winded post, cos frankly I don’t have the wind for it! It’s just a post about a shitty couple of weeks. It’s about knowing it’s ok not to be ok. And not just because that’s a really catchy phrase. Because it’s true.

So, I’ve been properly down for 3 days straight, which isn’t that long physically, but Ive been feeling it loom for a couple of weeks… and that plays havoc with me mentally. Because when my body says ‘lie down and don’t move’! And my brain says ‘shhhhh you’re so tired you can’t speak English, time to sleep’…. it’s really fucking tempting to give in and let lovely lovely depression take the wheel. Because if the Black Dog takes over, I promise you I will sleeep. For daaaaays. And probably enjoy it.

BUT getting that beast leashed again is too damn hard.

So I get up. I feel out my bones and ask them if it’s a dancing morning. It is! Oh hells yeah!

I grab my big arse head phones. The ones that mean I can’t even hear my own pulse or breath.

I make my bed as I get my feet under me and start to pump up the music.

I listen to three songs.

1: We’re Killing Strangers by Marilyn Manson

Because it has a wicked fucken beat and he can soothe the angry beast. I can’t dance for shit, but I do anyway. And my body doesn’t move the way I’d like it to… so I’ve taken to doing a sort of interpretive dance. It uses all my muscles, it’s bang on the beat and it feels really good. I may look like an electrocuted pidgeon, but I feel as powerful and Childish Gambino.

2: Better Son/ Daughter by Rilo Kiley

Ohhhhh yeahhhh. Let’s bring it down, take it in and streeeeetch it out! This song gets under my skin in the best way. From the outside this sounds like yoga. I LOVE yoga, but again my body dictates what we do today. I’m cool with it, you silly old thing. So I take this bod o’ mine through a heavily restricted/personalized stretch sesh. And it feels gooooood. Take that OT, I AM doing what you suggested! Just… in my own way. Gold star!

3: Why Can’t I Touch It? By Buzzcocks

This one means it’s time to get up before I fall asleep on the floor. Get my inner, slightly less spry, Punk Bitch up and moving. Put the kettle on. Help my very old cat Nev through his morning routine.

I have to act like an adoring butler during this, or he gets offended and won’t eat. And I have to keep the other cats away from his food without making it look like I am. Oh, and give him privacy but be ready to open the door because after food comes the enormous need to evacuate… I won’t go into detail. Let’s just say we both regret it if I’m not paying attention.

I move through the house while the kettle makes it’s racket, just checking everything is ok, cos I’m gonna crash out in 5, 4, 3…

I make my cuppa. Tea should be made in calmness. I settle for raging loud mindfulness. I do it while I boogie to whatever comes next on my headphones. Then I sit. One must have 15 minutes to sit with a cuppa. Which is drunk black in case the sitting takes a bit longer and I need to nuke it hot again. Or drink it cold. Whichever.

And now I plan my day. My neck is saying NO MORE GIANT HEADPHONES! My heart wants to run and run. My aching body and says Calm Down. So we’ll get dressed, this oddball team of broken brain, bad ass chic and failing body. I’ll get us under the heated blanket. Bark up the laptop and do… something.

Or read.

Or watch Netflix.

Or wander around in the internet for a while, hug the cats, wait for the pain to fade.

Cos it’ll fade. If I’m careful, patient and work on not going crazy while I wait, it will bugger off long enough for me to walk the dogs. Or go to a market. Or whatever. Just be a big, pink haired weirdo outside in the world for a bit.

Not today. Maybe tomorrow. You all know how I feel about tomorrow… 🎶 🌞

Do you have Annie singing in your head yet? Has she done that bit where she says… The sun’ll come out… tomorrow? It’s so good. Oh, ready for my favourite part… You’re always a daaaaayyy awaaaayyyyy!!!!!!!

Hope you have that stuck in your head now. You’re very welcome.

Hoo – roo peeps,

Stay Weird,

X Bon

Rise Up

I’ve been listening to Andra Day’s song Rise Up on repeat lately…

(Click link to hear it in YouTube)

Because as Winter gets closer my fibro flares up, and so does my anxiety. Winter blues is a real damn thing. Especially if you have mental illness and chronic pain battling it out for attention!

So. I wake up. I stretch. I feel which part of my body is giving me the shits the most. I rise up. I make a cup of tea. I get dressed. I listen to music in my head phones, chuck the heater on aaaaand stretch. Move through some basic yoga moves. Test my memory from my PT stretches and go through as many as I can.

Move to a faster track and dance. Shake out these cold bones and aching muscles.

I might read. Visit a friend. Write. Hell, I might call my mum or just veg out on the couch.

Whatever it is, I find the happy thing and do it. Because I’m motoring along ok right now. But that never lasts.

So I focus on the joy. Which you can find anywhere, if you’re willing to look for it.

You can find it strolling down the street at a bus stop.

Or taking the SUV for a squirt down a muddy track with the dogs.

You can find it when you hit jack pot and take home a crochet blanket from the local Sunday market.

Or while watching Picnic at Hanging Rock on Foxtel and being swept away in nostalgia. Seriously, that show is like walking through poetry. Stunning visually and fans of the book will adore it.

You can find it sitting in front of the heater, thinking about reading a book, but really just lounging with the cats.

Or trying to do some work, but getting distracted by how cute the pup is when she snuggles with the grumpy old Nikki dog…

Or in photo’s of a rainbow neon city tunnel texted to you from a cousin…

Joy is in the small stuff. You gotta store it up.

Like a layer of blubber protects a whale through winter, so too will a layer of happiness be a cushion against bad days. And really bad days. Store up the good so you’re strong AF when the bad comes ‘atcha. It’s just good practice.

Trust me, I’m a Doctor.

Well, ok, I’m not. Just a mouthy chic who’s been on this tightrope now for nearly two decades. Yep. I’m old as hell. Ok, I’m still this side of my mid 30’s. But I got some mental health miles under my belt so just trust your local crazy lady ok? Layer yourself up in joy. It lasts longer that way.

Stay weird peeps,

X Bon

My first week with Fibromyalgia.

Fun new fact! I don’t have Rheumatoid Arthritis after all. My specialist informs me I have Fibromyalgia instead. Rightio! And that means frick frackin what exactly?

The research out there is a minefield, but I wanted to know the nuts and bolts of what’s going on with my body, so here in excessively worded laymen’s terms is what I found out. I’m making it simple so I can remember. I’m in my first week since diagnosis so the training wheels are definitely still on here.

For the sake of simplicity, here’s a conversation between a normally functioning body which encounters pain:

Body: hey brain, totally just stubbed my toe man. Pretty sure it’s broken.

Brain: no it’s not, it just hurts like hell. Here’s some serotonin to make you feel better and cos I’m nice I’m gonna go ahead and put some inhibitors in place so you can stop whinging. Call me back if it still hurts in an hour.

This is what my body does in the same situation:

Body: hey brain, just stubbed my toe. It hurts way more than usual… what’s that about?

Brain: I don’t know. For some reason I can’t give you the serotonin you need and I can’t block the pain for you with the usual inhibitors. Ew, now I can feel it too. And it won’t stop! Argghhhh!

Having Fibro is like my brain is a pharmacist and all outta the things that normally work. So I feel pain more than other people, and for longer. Actually like forever. Yay.

There are some medications that help put those blessed inhibitors back in play (but only to a certain extent). These drugs have traditionally been used to treat depression. Turns out they’re not so good at that. What they are good at though is pain relief where normal pain relief like panadol and his bigger cousins like codeine and opioids don’t. They also help with falling asleep, so I can’t take them during the day much.

The biggest mistake some people make is thinking oh ok, anti-depressants work. That means your illness is all in your head and you just need the right meds. Nope! The only part of this that’s all in my head is the fact that that is where my brain happens to live. And my brain has a faulty way of dealing with pain. This does not mean I’m imagining it. You wouldn’t tell someone with a brain injury that their symptoms weren’t real, so please don’t say it to me. Or anyone with Fibro. It’s just not the case and also really rude.

So what fun symptoms do I get?

  • Widespread chronic pain
  • Fatigue
  • Interrupted sleep
  • Bowel issues that can either present in constipation or diarrhea
  • Memory loss, concentration problems etc also know as ‘Fibro Fog’
  • Sensitivity to light, sounds and smells.
  • Headaches and migraines
  • Sensitivity to touch. So what feels like a light punch to you, is a knockout to me
  • Weight gain

There might be others, but these are the ones I’m experiencing. Not an exhaustive list by any means, but like most things on this blog, these ones are all about what’s happening to me. Fibro has also been linked with depression and anxiety. Both of which I’ve had for years and years. Some people develop them at the same time as Fibro. It’s a whole ‘what came first’ scenario and Dr’s don’t seem totally sure about why they seem to be connected. In my case the horse was way before the cart. Or the hen before the egg? Whatever, I’ve been mentally ill longer than I’ve known this fresh hell. Probably.

So what now? Like I said, some anti- depressants might be effective. Side effects being drowsiness and a fucked up metabolism. Oh wait, way ahead of you there. I’ve been on the weight gain roller coaster for years. Least fun ride ever.

So to sum up, this sucks. But it could be worse. I’m a whinger by nature, but I’m also good at looking on the flip side. So while my my whole body hurts and there is no cure, it’s not terminal, it’s not necessarily degenerative and I’ve got a kick arse support network. So kiss mine Fibro, I got this.

Keep dancing peeps.

💋 Bon xx

Wake up Dancing

I wake up. My whole body hurts. They’ve told me why now. I don’t think the reason matters right now. I moan, groan and roll over. Stretch, yell while doing it. I’m getting this body ready for the day. I will not stay in bed. Fuck that noise.

I wake up with music in my ears. A tune stuck in my head. The vestiges of a dream. So I hunt it down on my phone. I turn that shit up. I get up. Turn my speakers on LOUD. Then I come back and I dance. Yep. Dance. It starts with raising my hands. I’m lucky I got so much booty to jiggle. I’m lucky my body hurts, coz that means I can still feel it. I’m lucky I woke up.

I shimmy, I shake, I shuffle. My body warms up. I stomp. Shake my hands, get them moving away that awful stiffness. I tap a thunderous two step. I jive. I put on Clairy Browne & The Bangin’ Rackettes. I scream out all the words to I’ll Be Fine. This Queen is awake and she’s rockin. Behind my bedroom door I dance my way into the day.

Because fuck depression.

Fuck chronic pain.

Fuck anxiety.

And most of all, fuck Rheumatoid Arthritis.

Cos I wake up dancing.

💋 Bon