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.

šŸ’‹ 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.

šŸ’‹ Bon xx

Iā€™m a big big girl…

Reasons why I shouldn’t be allowed to adult:

* If left unsupervised I do very stupid things. Right now I’m sitting in my lounge room on a camp chair because last week I sold my couch with no viable back up plan.

* I totally gave up and let the kids eat all the chocolate out of their Advent Calendars for dinner if it meant I didn’t have to cook.

* I like animals more than people. My message bank says ‘please hang up and text me’. There’s also a sign on my door that reads ‘sorry I’m not good at people-ing’ and it’s not ironic.

* Today I had a 4 hour nap, woke up with a nap hangover, felt queasy and guilty and will definitely do it again tomorrow.

* If my brother doesn’t ask me what I feel like for lunch, I’ll forget to eat most days until 4pm.

* Most of my texts to husband person start with ‘ok, don’t be mad but…’

* I spontaneously acquire pets. I’m not ever sorry.

* I once got stuck in a laughing fit so badly I left work early.

* I often park ‘by braille’ in crowded car parks.

* I watch ridiculously scary movies and then make husband walk me to the toilet at night time… it’s 6 feet across the hallway.

* I got a bit excited about the easy money from selling my couch, so I sold all my book cases, then had no where to put all my books, so I sold them too.

* I say I’m becoming a minimalist but really I’m addicted to the excitement of selling things now… anyone wanna buy my stove?

* I got distracted writing this and decided to watch Rosehaven instead.

Nothing New

You think she’s a foolish girl

You think she’s silly and flip

She knows it’s you who slipped

She’s been down for so long

It’s nothing new to you

You think she’s mean and idle

While she’s feeling so much

That she can’t find her way

She’s fighting harder than you can see

She’s fought for so long

You think she’s gone

She’s always been here.


I’m going to drift right down to the bottom of the ocean

I will wait here in the quiet

Until my eyes ache for the sky again

I will let my mind wander

In the safety of my gently rocking sea room

Eventually I will need to rise

If I stay too long beneath the calming waves I shall drown

Though for now the turning of the ocean soothes me

And I am sorely tempted to stay forever.

Lonely Bones

Deep below the cold dark dirt

Lies the body

Of the boy they search for.

I bleed for his mother

And for her broken heart

Over his lonely bones.

All their pain and fear and hurt

Are lying down there with him

And when they finally bring him up

To see the sun again

Their hearts will not be healed

And he can’t stop their pain.

But there he’ll be and they will hope

That the aching mystery will fade

When Johnny finally goes home.


I can always tell when my meds have stopped working. There’s nothing subtle or gradual about it. There’s a sudden nothing that sucks all the colour out of the world.

It’s very hard to describe nothing. People assume that because I have depression, I feel sad. Sometimes I do. But this is different. It’s nothing. It’s not happy, or sad, or angry or hurt. I can hear a joke and understand that it’s funny. I might recognise that it’s something I would usually laugh at. But I don’t.

I buy a new couch. This should be exciting. The new couch will go in my new home. I have never bought a couch on my own before. I’ve had to save hard to buy it. But I feel nothing as I drive to the store. Perhaps at best a kind of flatness. Like I’m a robot, completing the tasks necessary to drive my car. I feel neither anticipation nor pleasure when I get to the store. I sit on the couch. It is comfortable and so I buy it. I order it in a colour that suits my new house and add delivery. I should leave the store with butterflies in my stomach. A bit of a skip in my step and a big silly grin on my face. But no. Perhaps you might expect me to miss those feelings, but I cannot. Even if I forced myself to jump about and say the things I’d usually say I won’t feel it on the inside. And in this cold wasteland of logic that I’m currently stuck in, I can see that there is no reason to do these things. So I don’t.

See what I mean? It’s hard to tell you why I feel nothing, or even what nothing feels like. You might think whoa, that must be annoying. Or that must make you sad. But it doesn’t. Nothing is nothing. It doesn’t feel good or bad.

I do however recognise that it is not normal to feel this way. I’m like a computer running a diagnostic and I can tell that something is missing. I understand that I should have emotions, as messy and confusing as they are.

So I go to the Doctor. I tell her how I feel, I can see she doesn’t understand, even though she tries to. I get new medication. It works… for a while. And then the nothing will come again. My mental illness adjusts quickly to whatever medication I’m on, rendering it useless within 6 to 12 months. There’s only a small pool of medications that are useful and I have cycled through them repeatedly, making them less and less effective. Eventually they won’t work at all and I have to hope that some smarty pants somewhere has made new ones by the time that happens.

If they don’t there’s a good chance the nothing will come and the Doctor won’t have anything to give me to make it go away again. This scares me. Ironically though, if it happens I won’t mind at all. That’s how the nothing works. Perhaps that is a small mercy.

Can I please ask you to do me a small favour though? If the day comes when I feel nothing, will you remember what my laugh sounded like? Will you smile when you think of my daggy jokes and horrible puns? Do you promise to laugh at all the cat memes for me? Can you remember my face with a smile on it for me? Because I won’t miss it, but you might.