Why doesn’t Bear have a Facebook page?

Preface:
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?”

Eight months of silence

Do you know how long it’s been since my last blog post?

EIGHT.
MONTHS.

If that doesn’t seem like a long time to you, let me remind you that it’s possible to grow a tiny human being in that amount of time!!! (Well, *I* can’t do that, but other woman who still have wombs can. Would you believe today marks a year since my hysterectomy?! Where did that time go?)

I wish I could tell you there was an exciting reason for my absence.

I won a trip to an exotic destination – so I’ve been away travelling…

A wrote a story and a big publisher loved it – so I’ve been busy doing the final editing before it hits the shelves…

MARVEL called, and told me they needed my big brown eyes to feature beside their next superhero – so I’ve been busy filming…

But, as is often the case with chronic illness, the reason is boring.

Fatigue has been kicking my butt.Screen Shot 2017-05-16 at 8.06.04 pm.jpg

I know, I know, I’ve talked about being tired before. Because I have both dysautonomia and CFS/ME, fatigue is a big part of my life.

But over the last year, I’ve noticed that I’ve been able to do less and less, because of the constant, crushing weight of exhaustion. The decrease was so gradual that at first I didn’t really think much of it; I just accepted it as part of my illnesses, and did my best to keep plodding along. It’s not abnormal for me to have a bad week, or a bad month or two, where my symptoms are worse for no particular reason at all. So just keep swimming, right?

Eight months of treading water later, I caught myself mid-sigh. It was the kind of sigh you do to prepare yourself before you pick up something heavy, or attempt something particularly taxing; a bracing kind of sigh. What was I mentally and physically preparing myself for? Stirring a glass of water with a teaspoon, to mix the medication in.

That’s when it hit me just how tired I was, and how long I had been that tired. There hadn’t been any ‘up’ to offset the ‘down’, which meant this wasn’t part of the normal ‘up’ and ‘down’ of a fluctuating chronic illness – it was something more. No matter how much I’ve rested, or how carefully I’ve rationed my ‘spoons’ (energy), most days I’ve been so exhausted that showering myself is a mammoth task – let alone accomplishing anything productive. Which means, for a while, most of my creative pursuits (like blogging, sketching, painting, digital drawing) have had to be shelved (and oh! how I’ve missed them!).

It’s possible that my illness has just progressed, and this level of exhaustion is now my new ‘normal’. (I hope not!) But I didn’t want to take that for granted, when it could just as easily be something fixable (like a simple deficiency). So I took myself off to a GP for some blood tests.

Almost everything came back normal – zinc, potassium, magnesium, thyroid hormones etc. The only thing that stood out was that my iron levels are quite low. That’s not new – it’s been quite low for several years (a result of heavy bleeding each month, and the inability to eat food for several years). I’ve tried taking iron supplements, but they made me incredibly nauseous (a known side effect). Iron water was a less nauseating alternative, but it wasn’t strong enough to boost my numbers by much. My GP decided it was time for an iron infusion.

I had the infusion a week ago, and it was a surprising non-event at the time. I had heard of people’s BP dropping so much that they had to be hospitalised; so when I just got cold and tired and had a bit of abdominal cramping (all normal reactions), I chalked it up as a win.

Until a few days later, when I broke out in hives.

*sigh*

I popped into my local ER, just to confirm that it was hives (and not something contagious). They confirmed my suspicions, but because I can’t take antihistamines (some of them give me hives, not to mention tachycardia, heart palpitations, and serious chest pain) they couldn’t offer anything to help. So I got through the weekend by smothering myself in calamine lotion (which means I had to attend both hubby’s birthday dinner and Church looking like I had leprosy!).

When that wasn’t enough to keep me from wanting to tear my own skin off, I went back to my GP, who prescribed a short course of corticosteroids to help my body calm its farm.

Now…we wait. It takes around two weeks before the iron really kicks in, so at this stage I still have no idea if all this was worth it. It’s very possible that it won’t make any difference at all (gulp!). But if it does help with my fatigue, I’d do it all again, because…

I’M SO SICK OF BEING A PERMANENTLY EXHAUSTED PIGEON! 

l-7580On the positive side, while I’ve been spending so much time cooped up in bed, I’ve found some really inspiring ‘arty’ channels on YouTube. They’ve been brightening my days, so I can’t wait to share them with you (when my energy / brain power is back on track)

In the meantime, I just wanted to pop back in here to assure you all that I’m not dead.

Just dead tired.

bear-1383980_1920.jpg

xx S.

 

Don’t know what you’ve got…

what-youve-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.

Yep.
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
Darkness
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
Darkness

*          *          *

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”