Why doesn’t Bear have a Facebook page?

Recently I’ve found myself having a lot of conversations with people about why Mr Happy and I deleted our facebook accounts. And each time, I wish to myself that I had already posted this explanation, so I could just share it with the person I’m talking to.

I wrote this post two years ago to answer a question that was being asked frequently. But then my health took a nosedive, and I didn’t have the energy or brain power to blog anymore. So this post just hunkered down in my drafts folder. Every time I’ve considered posting it I’ve thought, “No, it’s been too long since my last post. That’s a weird post to start back with. I’ll just wait until I’m a bit better. Then I can write a few other posts and this one can be shared after those”. 

But it’s been two years, and that “bit better” hasn’t happened yet.
So I’m sharing it now, and then retreating back into hibernation.
Hopefully ‘winter’ will be over soon, and I can get back to regular blogging.

Missing you all,
xx S.

Why doesn’t Bear have a Facebook page?

It’s annoying, I know! Facebook is an awesome way to keep up to date with your favourite pages. They make it really easy to ‘like’ a post, comment on it, or share with friends and family. Bear would love to have a Facebook page, because more people would find our blog, learn about dysautonomia, and interact with us!facebook-140903_1920

Continue reading “Why doesn’t Bear have a Facebook page?”

Don’t know what you’ve got…


Don’t it always seem to go
That you don’t know what you’ve got
‘Til it’s gone

Big Yellow Taxi…a song that brings back memories for me. It was originally written and recorded by Joni Mitchell in 1970. But I wasn’t even born then, so I didn’t know about it until a cover by the Counting Crows came out in 2002. The music was catchy and it had poignant lyrics, so teenage me loved it. It was a good one to belt out in the shower, or on car trips with friends.

Other songs have come and gone since then. But this one has been playing softly in the background of my mind recently.

Gratitude is kind of an odd thing to be thinking about right now. I’ve been stuck in bed for the last few days with some kind of virus. You know the drill: your temperature keeps switching between hot and cold, your throat is scratchy, you can’t stop sneezing, snot is pouring out of your nose like some kind of mutated fire hydrant, your sinuses feel like they’ve been packed with lava and gravel, your face is swollen, and your ears are so pressurised you wish they would just give up and explode.

Fun times.

But while I tossed and turned in pain, nauseous and struggling to breathe, I kept reminding myself, Continue reading “Don’t know what you’ve got…”

Dysautonomia: a big, scary word?

Intro panel.jpg

When one Mum’s body started doing strange things, her daughter knew what it meant…her Mum was dying.

Only, the Mum wasn’t dying. 
Her body just does strange things because she has dysautonomia.

The Mum tried to explain that to her daughter…but she couldn’t seem to find the right words to help her understand. So her daughter continued to be sad and scared.

The Mum messaged me in despair.
“How do you explain dysautonomia to a seven year old?”

My reply?
“You make a comic!”

To that Mum… I hope this helps.

*         *        * Continue reading “Dysautonomia: a big, scary word?”

The Battle

A few months ago, one of my healthy friends suddenly became quite sick with an as-yet-undiagnosed illness.

I wanted to tell her why it was so crucial that she rest. I wanted to explain that her body was under attack, and that nothing was more important than helping it to win the fight. But I didn’t have the words.

This poem spilled out of that place.

The Battle

Tough, sturdy back
Broad, muscular chest
Long, powerful legs

The horse is strong

But wolves are circling Continue reading “The Battle”

Hello from the other side!

I made it.

It was a long crawl through a dark, putrid tunnel. But I made it to the other side.

Note: If you’re new here, you probably haven’t read the series of posts about my recent surgery / subsequent rough recovery. I’ll pop the links below for you.
(Prequel) Heartache
(Announcement) The problem with your but (it’s not what you think!)
Hysterectomy: day 1
Hysterectomy: night 1
Hysterectomy: recovery week 1
Hysterectomy: recovery weeks 2- 6

At the time of my last blog post (six weeks post surgery), most of my abdominal pain had subsided, and I was starting to ease my way back into life. I was still experiencing intense fatigue and brain fog though (more than was usual for me).

I’m glad to report that, over the following month, those symptoms gradually eased back to my normal level. Which is to say, the other day I carefully wrapped an overripe banana in a plastic bag, and put it in the cupboard…instead of the freezer. (Luckily I found it again that afternoon, and not a few weeks later! Yuck!) But I can write a coherent lesson again, and read blocks of text instead of staring blankly at the page…most of the time (which is my normal).

I do still get pain in my abdominal muscles sometimes, and my hip joints are still extra cranky. But, apart from that, I’m pretty much back to pre-surgery me!

Well, pre-surgery me minus an organ…and minus the days lying on the shower floor losing copious amounts of precious fluids; the agonising cramping / stabbing / kill-me-now pains; the bleeding on all my clothing / bedding / towels; and the epic nausea. (This new me is pretty awesome, just quietly!)

So, if I’m back to normal… why has it been over a month since my last blog post?

I have a good reason, I promise.
really good reason. Continue reading “Hello from the other side!”

Hysterectomy: recovery weeks 2 – 6

Note: This is part of a series of posts. If you haven’t read the previous posts in the series (linked below), I encourage you to pop over and read them first.
Hysterectomy: day 1
Hysterectomy: night 1
Hysterectomy: recovery week 1

*          *          *

By week 2, I was sick of drowning in my own stomach acid. In desperation, I called my local chemist and asked to speak to the pharmacist in charge. I didn’t hold out much hope – if the hospital in the city couldn’t help me, what were the chances of finding help in my tiny country town?

Well, it turns out, when someone actually wants to help you, the chances of getting help are much higher!

The pharmacist was absolutely lovely. He listened patiently, and then worked with me to find something that wouldn’t a) interact with the other medications I had to take or b) mess my stomach up even further. I immediately sent Mr Happy down to the chemist, and he returned with a purple packet of hope. They were 24hr tablets – designed to be taken once daily. I couldn’t open the box fast enough.  Continue reading “Hysterectomy: recovery weeks 2 – 6”


Trigger warning: this post discusses depression and suicide.

Before you read this poem, I want you to know that it describes the way I felt for the first week after my hysterectomy surgery (more about that surgery here, and the recovery here, here and here). My emotions were affected by the physical stress of the surgery, the fluctuations it caused in my hormones, and the various medications they gave me. Although I wasn’t suicidal, I still felt depressed and worthless, I hated myself, and I was terrified that this was ‘the new me’. (I was open with my family about how I was feeling, and they were incredibly supportive of me). Thankfully, as
 I recovered physically, I also recovered mentally, and the darkness melted away.  Continue reading “Darkness”

Hysterectomy: recovery week 1

Note: This is part of a series of posts. If you haven’t read Hysterectomy: day 1 or night 1, I encourage you to pop over and read them first.

*          *          *

Most people don’t like being in hospital.

I’m no exception.

In fact, having had so many bad experiences in hospitals, I have to steel myself to even get through the front door. So after a long first night, I would have loved nothing more than to bust out of there at the first sight of the sun. Unfortunately, I needed to be there for a little longer.

Here’s how the rest of week 1 played out…

Birthing an echidna was not on my bucket list…

Continue reading “Hysterectomy: recovery week 1”

Hysterectomy: night 1

Note: This is part of a series of posts. If you haven’t read Hysterectomy: day 1, I encourage you to pop over and read that post first.

*       *      *

I hear beeping, and the buzz of lots of people talking. I can’t open my eyes. Thinking is like trying to swim with concrete boots on. I have an oxygen mask on.

Gradually, I become aware that a nurse is standing by my bedside. “You’ve had surgery love, and everything went really well. You’re just waking up in recovery now. How are you feeling?”

Keeping hold of a thought long enough to speak it is like trying to keep hold of a wet, wriggly piglet. But I eventually manage to get out, “I feel really sick”. 

She pats my hand sympathetically. “The anaesthetic makes some people feel that way. We’ll give you something now to help you.” 

I’m slipping in and out of consciousness, still not really with it. But an all-consuming nausea is piercing through the fog, as though it were poking my brain with a sharp stick.  Continue reading “Hysterectomy: night 1”

Hysterectomy: day 1

My hysterectomy was in late May, almost three weeks ago now. The surgery went well, and I’m slowly recovering. A lot of the pain has gone (as long as I don’t try to do anything). But my head still feels stuffed with cotton wool. The brain fog is less like fog, and more thick, black mud. Thinking is slow going. Writing is slower still. But I wanted to get this down, while I still remember it. It’s part of my life. And maybe, one day, it will help someone else with theirs.

I’ll write about my recovery, when I can. 

*     *    *

Hysterectomy: day 1

When I arrive at the hospital in the morning, I tell the nurses that Mum and Mr Happy are my entourage. They smile understandingly and let them accompany me everywhere, almost right up until the surgery itself. It helps, having them there. Sitting in the waiting room, we joke about the products being promoted on midday television. Rice cookers and vacuum cleaners and exercise gear. My husband is incredulous that anyone would watch those ads. My Mum tells him of a retired couple who once watched them all the time. The elderly gentleman bought so many (unneeded) things from those advertisements, his wife nearly had to confiscate the credit card!

Continue reading “Hysterectomy: day 1”