I’m writing a book!

pen-book-300x225

Yeah you read that write (haha).

I tried last year to write one and I liked it, I had fun yadda yadda.  But trying to write a piece of fiction with plot, characters and narrative traction is just not gonna happen with my current mental state. So move over Diary of  Wimpy Kid, cos here comes one for the grown ups.  What’s that you say? An excerpt? Why I really couldn’t, ok then, if you insist! I mean I know you probably didn’t, but I like it better my way.

Sometimes I wonder how I would appear in a court room (it’s only a matter of time).
Like not on what charge, that’s the beauty of being me, I don’t worry about the big stuff. But how people would see me. I have finally settled on charismatic and witty with the power to rip someone’s head off with my intellect.
We’re talking me, on my best day. It’s a good mix.
Step 1: Make the jury laugh and warm up the room (my life is one long comedy festival).
Step 2: Tear apart the slimy lawyer.
Step 3: Saunter out of the court room after slapping the witness box and announcing ‘case closed’.
Step 4: Probably go to jail.
Do you love it already? Cos I do and that’s all that really matters.  It’s my book and it’s keeping me from pulling out all my toe nails.  Besides, my motto is Do The Thing.  Do it now.  Life is short or bug arse long depending on your current mindset. You may as well spend it doing entertaining things.  Cross off the bucket list now. Cos tomorrow we might all blow up.  Or melt down.  I mean, it depends on what happens first.  Whether a world leader presses the big red button or the planet boils.  Either way, grab a glass of wine, decapitate a butterfly, paint that picture, do a cross stitch with all 6 strands of cotton. LIVE. It’s kinda what we’re here for.
X Bon.

Dear Grown-Ups

Last night I was suffering a fairly standard bout of painsomnia (just like insomnia, but caused by pain) which is a lovely new feature of Fibromyalgia for me. It’s also hot as hell here in Aus and didn’t cool down until 2am. I know, cos I was still awake when it happened. God dammit.

Aaaaaanyway, I was listening to one of my fave podcasts, Terrible, Thanks For Asking and Nora was doing an episode called Dear Grown-Ups which really touched a nerve. Basically a whole heaps of listeners sent in questions they wish adults had asked them as kids. Not just mums and dads, but other adults. In my case of course what hit me in the chest like a train was the wish of one listener for anyone to have reached out and just said simply, what’s going on at home is not normal. Your mum has a drinking problem and we’re here for you. I didn’t need a big intervention (they never work) or for everyone to march in with a brass band and make a big deal. But if someone had of looked at me instead of her and said it’s going to be ok, that would have meant the world. For them to say ‘hey talk to me if you need to’. Well, I did tear up then.

The other thing that came through repeatedly was adults wishing they had known that they were loved NO MATTER WHAT as children. Really known it. Because it was said out loud to them. So I sat down right then and wrote my son and daughter letters. Simple words, saying very clearly that they were loved unconditionally. No matter what they say or do, I will love them. When I’m yelling, I will love them. And they don’t have to do anything for that love. They don’t have to get awesome grades, or have the most friends, or be the best at sports. I’m already proud of them. I think they’re wonderful little humans. I will just love them. As they are. Forever. Because I’m their mum. Then we read them together this morning and talked about it a little bit. They can keep those letters and read them whenever they need to. Because we all need reminders.

I’m reminding myself not to take for granted that the people around me know these things. Especially children. I have to remember that they’re really sensitive. They see and hear more than we realize. They can pick up on emotions and energy we think we’re doing a great job of covering up. Newsflash? We’re not. That’s ok. But I might as well tell them why. Because I remember thinking as a child that every bad mood and every tear my mother shed was somehow my fault. It wasn’t and I know that now. Grown up lives are a huge juggling act and not many of us can juggle. So I tell my kids, I’m crying because the door fell off in the lounge room, or my pay didn’t come through on time or I burnt dinner and it was just one damn thing too much today. And yeah I yelled and did a bit of swearing, because it sucks. But I’ll be ok, none of this is on you.

Oh, and I love you.

Every single day.

No matter what.

💋 Bon

Learning to love myself.

Our new house has a full length mirror and tonight I looked at myself. Like took off my dress and just really looked. Of course at first I saw all my flaws. My fat belly, my dimpled legs, my bingo wings. But then I saw that I stand a cute way, I have strong legs and beautiful tattoo’s. I like my hair this short and it’s natural colour.

Yeah there’s stuff to work on. Of course there is. But I can still like me the way I am now. I can appreciate this body and everything it does to keep me up and moving. I can even look at it and say hey you, I’ve hated on you for long enough. You are amazing. I will look after you, I deserve to feel beautiful.

On the way to bed I walked out to my husband, without putting my dress back on, comfortable for once. Content. Hell, even happy. He yelled at me and hurt me. His disgust was louder than his words. I started to cry. I felt so deflated. Like I’d taken a big step forward and been shoved backwards harder than I deserved.

But I can still be happy. Even if tonight we sleep in separate rooms. I can still like me. I can love the skin I’m in. No one can take that away from me. Not if I’m resilient enough not to let them.

Be brave. Love yourself. The world looks better from here.

Flirting with Death

It’s hard to explain what it feels like to flirt with death. I guess when you can’t feel anything it’s the only thing that makes you feel something. And even the worst something is better than nothing at all.

I know how fast I need to be driving to ensure a fatal collision with a tree. I know how high a building needs to be to make it a certainty that if I step off I’ll be gone. I know how fast a train needs to be going so that if I throw myself in front of it I’ll die instantly. I haven’t yet figured out exactly how many pills I need to take to make it a sure thing, evidenced by the fact that I’m still here.

Sometimes when I’m standing numbed in a crowd the only thing that can snap me into the moment is the heart pounding temptation to step into traffic. To just let go and give up. To finally be done.

Because how long do you think I can fight my own brain? How long can I be passed from one doctor to the next and the next and the next and slowly realize that none of them know how to help me? That their useless words comfort neither of us. Mental illness is the biggest field I know of that has the least answers and I’m so tired of it. The uncertainty. The endless not knowing. The unfixableness of me.

I keep fighting. I stay. For my loved ones. For my family. For my children. For you, reading this and looking for your own answers.

I will rise out of this darkness again, I hope. In the meantime I pray for something to take my pain. I clutch my pillow tight and I hold on. I wait. For that lost piece of me to return. All the while knowing I’ll have to do it again and again with nothing to ease me. Nothing to gentle this battle. No peacekeeper coming to show me my worth or a cure to wait for.

Just me. Curled tightly in this bed. Holding on. Waiting for a reason. Flirting with death, while her enticing embrace laps gently at the edge of my lonely refuge and the temptation grows.

Hope died in my arms last night.

So I often have dreams that leave me shaking, but this has been the worst. This one broke my heart all over again.

(Trigger warning for mums who’ve lost bubs)

Last night I dreamed I woke up with horrible cramps in my stomach. I was panicked and sweating and suddenly a baby was born. I had no idea I’d been pregnant. She was so early and we thought she was still born. Then she took a shuddering breath and we wrapped her up and drove like the world was ending to the hospital.

They wouldn’t let me in the room while they treated her, but when they finally did she was pink and breathing and totally perfect. Tiny, but beautiful and oh so very mine. In the way of dreams she was already able to look at me and I fell in love immediately. I felt again the way I did when my other babies were born. As though my heart had filled up suddenly and grown too big for my body. I was even able to hold her gently against my skin in the hope it would increase her chances. I named her Hope Josef and prayed that she would be ok.

We fell asleep in a rocking chair in the premie ICU. When I woke up she was so still. I could feel the wrongness of it. I began to scream and was swamped by nurses and a doctors, but it was too late. They ripped her from my pleading arms and then turned back to me with the truth written all over their faces.

I collapsed. I couldn’t breathe for screaming. Husband tried to wrap his arms around me but I couldn’t stand to be touched. They wanted to put me in the psych ward. So I ran. I ran and ran and ran. I ran so far I couldn’t find my way back.

I woke up breathless and my arms felt so heavy, like they used to when I fell asleep with my babies in my arms. I was crying.

Now, hours later I’m still feeling so out of it. Sadness has settled down onto me like a second skin. Is my brain trying to finally process the miscarriage we had years ago? Am I haunted by the baby I almost had? Or by the one I might have next?

And when husband starts asking me for another baby again, how will I tell him I’ve seen where that road leads? How can I possibly explain that I’ve lost Hope already?

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

A golden age

Some of my friends have heard me say that I think we’re living in a golden age and make this half hearted smile like I’m being sarcastic. Fair call, more often then not I am sarcastic. But not this time.

Because we ARE living in a golden age. Right now if you’re reading this on a tablet or your phone can you just take a sec and go wow, yeah, that’s pretty cool. As a kid who grew up in the 90’s with no internet, phone, tablet or such it’s pretty fricken awesome. The best we had were Gameboys, Tazo’s, Tamagotchi’s and Rollerblades we’re still the hot new thing. We didn’t have phones and we went home when the streetlights came on. Trust me kids, you’re luckier than you think.

Also, this year Australia FINALLY voted yes to marriage equality, made it law and made me cry big fat happy tears. I was diagnosed with RA but because of the wonderful drugs we have now, my pain won’t be 24/7 like it could have been 10 years ago. Today I’m sitting on my couch, under the air con, watching whatever the heck I want on Netflix while scrolling through Facebook on my phone. Life is goooooood.

There’s no pitch here, no ironic message. As someone who often doesn’t have a lot of mobility I’m grateful. I can talk online to my friends, stay entertained and up to date with the world and I have no excuse to ever be bored. Pretty great huh?

Sometimes, all the little things in life that we see every day can add up to something pretty special. I’ve got a call coming in on my watch now, the one my Dad calls my Maxwell Smart gadget.

So TTFN my dears.

💋 Bon xx