Category Archives: Chronic Fatigue Syndrome

Of Chronic Illness and Unicorns

Life is like riding on a magical flying unicorn.

Getting a chronic illness is like that unicorn getting a puncture or losing an engine or something.

Okay, that didn’t make a lot of sense.

I originally devised this analogy with a hot air balloon, but then I thought about how fun it would be to draw unicorns with rainbows and stars and stuff, and I had a long and sensible think about how important it was to me to be clear so my audience would understand me which, in hindsight, wasn’t all that long and sensible, and now I’m finding that the unicorn is far too square to be hammered through this round hole, and what I’m trying to say is that this whole analogy is going down.

But that’s kind of the point.

When you get a chronic illness, your life becomes a nonsensical descending unicorn and the only way to keep it in the air is to carve off big heavy chucks of yourself and throw them away.

If you’re not too ill, you might be able to keep your career afloat, but only if you throw out half your social life and all your hobbies. Or perhaps you choose to throw out half your job; you work part-time but you keep on top of your groceries and housework and you get to see your friends just as often as before.

But if you’re very ill, if doctors slap adjectives like “severe” on whatever it is you have, your unicorn might not be able to carry much at all.

I threw out a job. I threw out study. But it kept getting worse. The unicorn got shot—

—so I rarely left the house, but then it caught fire—

—and I gave up all housework.

For two years, I had the adjective “severe” and a very unhappy unicorn.

I still had my partner. He supported us financially, did all the housework, and helped me when I was sick. But we no longer had a normal twentysomethings relationship. Our friends were taking each other out to bars, having cheeky shower sex, taking selfies while skydiving, bathing in smashed avocado, and firebombing napkin factories. (Or something. Being housebound leaves you a bit out of touch, so I had to extrapolate from sitcoms, social media and inter-generational war opinion pieces). We were different. My partner held my hand in waiting rooms and only slipped into my shower to stop me collapsing in the heat.

People told us how surprised they were that he didn’t leave me and how wonderful he was for staying.

(He is, of course, wonderful).

Because I was such a burden.

The guilt was worse than my illness. Which—to clarify for anyone who hasn’t been so physically destroyed that they’ve spent an entire day perfectly still, not able to move to get food, water, visit the bathroom, text anyone for help, or turn on Netflix—is really saying something.

I apologised to my partner non-stop. Every time he did a chore, got back from work, or paid a bill I hadn’t contributed to, I told him how sorry I was.

But it wasn’t enough. It didn’t soothe the guilt.

I started apologising for no reason, just because I suddenly remembered my broken body, just because he comforted me, just because I still existed. I woke him in the stupid hours of the morning to beg forgiveness. If I had been capable of leaving the house, I would have followed him all day, popping up in a flurry of ImsosorryImsosorrys during bathroom breaks and conference calls. And actually I have a phone and am resourceful enough to achieve a similar effect while lying half-dead on the couch at home.

In short, I was overwhelmingly annoying.

He sat down to talk to me about it.

I could see he wanted to reassure me, and I saw the whole conversation play out in my head. He would say all the nice things I’d heard before, that we were getting by without me working, that it was only a little more housework than he would do if he was living alone, that it wasn’t a problem to schedule his day around my doctor’s appointments. And, ace in the hole, none of this awfulness was my fault anyway.

And I knew that I would pull a face and nod and say okay, but not really be convinced.

Because I would know, deep down, that he would only say all this because when you care about someone you don’t want them to feel like they’re weighing you down. (Even if they are). And maybe because, if you really care, you think it’s worth carrying their associated awfulness.

But the conversation didn’t go like that.

He told me that I make him laugh every day. He told me I am fun. Even when I am housebound. Even when I have to lie perfectly still and can only communicate through facial expressions. He told me I make space for him to be himself. He told me he likes to hear what I have to say about things, and that I make him look at the world differently. He told me that he wants to be around me.

Instead of denying I was a burden, he told me I was carrying him too.

It was special and wonderful and surprising. A big heap of surprising. A fully-functional-unicorn-load of surprising.

I hadn’t realised I had all those things on my unicorn. Right up until then, I believed that if my ability to earn money and do other useful labour fell and smashed into a million pieces, there wouldn’t be anything worthwhile left of me.

But now maybe I do.

Sometimes. Almost.

At least I try to believe it, which doesn’t mean I succeed all the time, but I’m getting better with practice.

And I think that there are a lot of people like me out there who have papered over their self-worth with jobs and projects and busy-ness, telling themselves it’s all integral to who they are.

It’s not.

Nothing is secure. Not your job, not your body, not your abilities.

But you don’t need any of it to be someone.

I am no longer plagued by the adjective “severe”. It took time, but now I can look after myself, prepare food, leave the house and work from home. Commuting is tricky, and I need lots of breaks and sick days, but that’s still a lot of easy reasons to value myself. Sometime I even forget I’m sick, but I always try as hard as I can to remember what I am underneath.

Because I like a challenge. Because while it’s great my partner likes me, it’s my opinion that matters. Because the future isn’t guaranteed.

Because a magical unicorn isn’t going to do it for me.

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One of the illustrations from this story, Analogy Unicorn, is available in my store now!

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How to Get a Cat: An Illustrated Guide

For the last couple of years, I have sat at home all day alone.

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Chronic illness can do that to you. It hasn’t been too bad, really. I don’t live alone, so I have company for non-working hours, and some wonderful friends and family members visit and take me out on my good days. A lot of people with my illness have it much worse.

But still.

Being alone wears you down.

(Even a super introvert with social anxiety disorder and occasional agoraphobic leanings, like me.)

So, easy solution, I got a cat.

We were renting and weren’t allowed pets, so it only required us to spend all our current and future money to find a house, sign over our souls and move, just before Christmas, the worst time of the year to do anything other than eat gingerbread. It was no trouble at all.

I like cats. I had a cat when I was growing up whom I loved to bits.

Although, actually, it was me who ended up in bits. That cat was a psychopath. When I was eight she invented a game where she would lurk outside the bathroom when she heard the shower. She would pick a natural bottleneck—a doorway, the hall—and wait for me to emerge, vulnerable, wrapped only in my towel.

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Sometimes that’s all she would do. Just watch me as I edged past her, staring with pouncing eyes, knowing I was nervous. Other times…

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Remembering this, I thought a great deal about the type of cat that would be best for us. And it turned out my partner and I had met a lot of other types of cat over the years that we didn’t think would suit.

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We didn’t want the kind of cat that hates people so much it lives on top of bookshelves whenever anyone is around.

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We didn’t want the type of cat that pretends to like you, but acts as though it will catch fire if you actually touch it.

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We didn’t want the type of cat that murders animals larger than itself in the dead of night, then eats their entrails. I know people who live with this type of cat, and since the Possum Incident, they haven’t been the same.

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Armed with a clear picture of what we didn’t want (literally, see cat types 1-3 above), we walked out of the shelter with the complete opposite. The most clingy, affectionate cat to ever exist.

He needs to be close to people, either sitting tucked under your chin or participating in whatever you are doing, at all times. For the few days after we took him home, he only stopped cuddling and kneading on my throat for eating or pooping (his eating or pooping, not mine).

He’s getting better at separation, but he can’t handle being left out of things. He follows me from room to room. He watches as I brush my teeth. He pounces on books and my computer so he can play with them too. When we do the dishes, he claims the rinse water as his personal paddling pool. Tiny, prickling claws are involved in every activity, and if you try to stop him, he climbs you with them.

It’s kind of like living with an affectionate cactus. Or wearing a scarf made of hedgehogs.

It’s very different to my previous experiences with cats. Showering with my old cat in the house was like starring in a B-grade slasher movie. My new cat turns showering into one of those romances that are supposed to be swoonworthy but are just super, super creepy. He won’t let me shut him out of the bathroom. He sits in front of the shower glass, sometimes with his face pressed up close, sometimes playing with the water droplets he sees running down my side of the glass that he can never catch. Sometimes, if he can paw the door open a crack, he jumps in.

(I let him in the first time because I thought it would teach him a Valuable Lesson about consequences and personal space. It didn’t. Now he thinks darting in and out under the sprinkling water is part of the game.)

As a human, that kind of thing gets you restraining orders. As a cat, it gets him whatever he wants.

He’s a whole new type of irritating cat.

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But I love him.

And I’m not alone.

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You can find four of the illustrations from this story in my store! The Floor is Made of Lava Cat, the No Touchies Cat, the Murder Cat, and the Extra Strength Co-dependent Cat.

If you love my stories and comics, check out my Patreon page. You can support my work and get unique rewards!

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Patreon, the future and feelings

Silence Killed the Dinosaurs started out as a whim. It continued as a way to help me cope through the worst of my chronic fatigue syndrome. Now I would like it to be a little more.

I have been thinking about how to write this for a few weeks, and I have made a couple of false starts. It’s all been wrong.

So I’ll start by telling you this:

I have set up a Patreon page to support my writing and illustrating for Silence Killed the Dinosaurs.

For those who don’t know, Patreon is a crowdfunding site designed specially for creators who have a constant output (i.e., writing, art, comics, music, podcasts, etc.). Instead of a big one-off fund-raising goal, patrons opt to pledge a smaller amount (as little as a $1) each month.

Don’t worry, Silence Killed the Dinosaurs will remain free to anyone who wishes to see it.

But if you like my work and think it’s worth a couple of dollars every now and then, please consider becoming my patron. There are some cool extras and rewards available for those of you who do.

If you don’t want to (or can’t afford to) support me that way but would still like to help out, please consider sharing my work around on social media and telling friends about it. I would really appreciate it.

If you don’t want to do that either, we’re still cool. But maybe leave a comment and tell me the picture I did for my Patreon banner is totally kick-arse. Because it is. Go look at it. That thing took me ages to get right.

Ages.

And now that has been said, I’ll tell you some news:

My chronic fatigue syndrome has improved.

I’m not better, but I am better than I was six months ago. I might improve more over the next six months. I might not. I don’t know.

I am still not well enough to drive, catch a bus or find employment. But I have more energy and fewer migraines. I can help around the house. And, more relevant for you, I can concentrate better and for longer, meaning I can write and draw more.

Maybe I’ll never be well enough work as a librarian like I had planned and studied for before I got sick. But there’s more to me than my university degree and plenty of other things out there. Maybe I could be a professional writer/illustrator.

Which brings me to something else that I want to say but could never get the lead up right (and still can’t):

All this—Silence Killed the Dinosaurs, you guys—saved me.

Maybe that’s a soppy, silly thing to say on the internet, but I don’t care. It’s true. Probably you didn’t mean to. Probably you didn’t even notice. It’s still true. You saved me and it means everything.

I was so sick that I barely left the house. I ached all over all the time. I was too tired to think. On bad days I spent the entire day lying down. On really bad days I would not eat food or drink water until my partner returned from work in the evening because I was unable to stand and go to the kitchen.

But I wrote and I drew. Not always a lot. Not always well. Not at all on bad days. But I never stopped, even when it felt hopeless.

And you guys.

I little while back I wrote about the awkward conversations I have about not ‘doing’ anything. It was written to be entertaining, and I like to think it was, but it didn’t come from an entertaining place. Chronic fatigue syndrome had been getting me down. I felt like I was achieving nothing and that I was worthless.

But then I got heaps of comments from you guys telling me that of course I do something—I do this.

The idea needed some time to simmer. It didn’t just tip me into a new way of thinking and a new way of doing things, but I thought about it a lot over the last couple of months. And then when I visited New Zealand I filled out my occupation on those customs cards. You do two; one for the country you leave before you get on the plane and another for the country you are going to while you are on the plane. Somewhere in the air things clicked into place. I left Australia unemployed, but I arrived in New Zealand a writer.

Putting it down in words like that was weirdly hard to do—especially as there weren’t enough little boxes to fit /illustrator—but I was brave and I did it.

I consider my life saved.

And now I’m going to go do some scary things with it, like putting my work out there and finding new ways to challenge myself creatively. Please hang around while I do it. We’ll tell jokes and I’ll draw dinosaurs. It’ll be fun, I promise.

The last thing I wanted to say was just this:

Thank you.

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I have a friend with an autoimmune disease, and I need your help.

I have a friend with an autoimmune disease. For anyone unfamiliar with how autoimmune diseases work and why having one sucks, it’s basically when all your white blood cells and other bits and pieces of your immune system are over-enthusiastic action-movie heroes who think ‘destroy everything’ is a mandatory step in the process of saving the day.autoimmune1Imagine being the city at the end of an Avengers movie. That’s how my friend feels most of the time. Unsurprisingly, she also gets lots of viruses and infections. autoimmune2She frequently comes down with tonsillitis. To stop this happening, she just had her tonsils removed. The procedure went about as well as these things do.

autoimmune3And she was fine until her immune system decided to save her from the painkillers.

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She was so unwell and in so much pain that she had to go back to hospital. This was not unusual for her. She has been to hospital 5 times in the last 6 months. She sees her GP about as often as she sees her mum, more often than she sees me.

I know what you’re thinking. You’re thinking: these medical comics are no Awkward Yeti and this is kind of a bummer story.

You’re right. I’m no Awkward Yeti and this is kind of a bummer story. And it’s about to get worse.

That statistic on how many times she has been to hospital in the last 12 months? I had to ask her for it when I sat down to write this because I didn’t know it. Even though I consider her one of my closest friends, she doesn’t always tell me when she ends up in hospital. She only told me this time because on that particular day I happened to message her to check up on her recovery. And in that message she apologised profusely for having to tell me bad news.

That’s why she doesn’t tell people. She doesn’t want to be a downer. She doesn’t want to force a nasty reality about life and illness on other people. She is afraid that if people get bad news every time they talk to her, they will stop.

Hearing this broke my heart a little bit.

It can be difficult to talk to people about chronic illness. It feels socially unsafe to bring up in conversation, and even the people who care don’t always want to hear about it. Perhaps because they want you to be happy and healthy and it hurts to know that you’re sick, so it’s easier for them to avoid all reminders.

With my collection of medical conditions (depression, assorted anxiety disorders, chronic fatigue syndrome, fibromyalgia) I get it. Or maybe I should say I kind of get it. Although I feel that social pressure to shut up, sit down and not rock the boat, I’ve never been very good at submitting to it.

Whenever someone dismisses my anxiety and tells me I’m just being ridiculous, I smile and get through the conversation. And then I draw a comic that touches on anxiety and publish it here.

When someone says that because I have depression I must make up stories for attention (true story … or is it?), I smile and get through the conversation. And later when I find other people who are drowning in emptiness I listen to them and then talk to them about what depression is and isn’t.

Every time someone shuts down discussion when I mention my chronic fatigue syndrome or completely ignores the effect it has had on my life, I smile and get through the conversation. And then drop my chronic fatigue bomb into the next one too.

And I was happy doing that privately. I would have gone on with my tiny rebellions for years, maybe my whole life. But then one of my closest friends apologised for telling me she was so sick she had to go to hospital, and that changed things.

My rebellion is going public, and I’m recruiting.

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Please talk about illness.

I know it’s hard and maybe you don’t know how and it feels too awkward, but life is about doing hard things.

You can start small. Acknowledge it in conversation when it comes up rather than gliding past it. Think about how that person’s illness might impact your plans together and, if it would help, offer to make adjustments. Ask them how they are doing. Listen to them, and let them tell you the truth. Ask follow up questions. Let them make jokes about it. Let them scream about it. Say Voldemort, not You-Know-Who.

Unless you are a hermit (…with an internet connection who follows my site), I guarantee that among your circle of family, friends, colleagues and acquaintances there is somebody with this kind of illness. Autoimmune disease, thyroid conditions, endometriosis, anxiety disorders, polycystic ovary syndrome, chronic fatigue syndrome, severe back pain, lingering physical injuries, fibromyalgia, Parkinson’s, MS, depression—I have names associated with each one.

When my friends end up in hospital I don’t want them to feel they should hide it. I want them to feel safe enough to tell people when they are so unwell they cannot get out of bed, in so much pain they vomit, or falling apart because waking up to the same struggle each and every day is becoming too much to hold together.

This is a bummer story, and I do not apologise for it. Maybe it’s awful to hear a friend is going through all that, but it’s far worse not to hear.

Please talk about illness. Take away its power to isolate already vulnerable people. Help me make a world where my friends will always know they can say something. I can’t bear the thought of them facing it alone.

“So, what do you do?”: An Apology

My apology comes on two fronts. First, I’m sorry to people who ask me this question.

You don’t really know me and you’re trying to maintain conversation through the inevitable lull. You pull out the old faithful “so, what do you do?” expecting a good fifteen minutes where you can just coast on me nattering about how being a vet or a lawyer or a real estate agent or whatever is just great and is really taking off for me right now and blah blah blah. You probably feel a bit good about yourself for offering me a hefty turn in the conversational spotlight.

But it doesn’t go that way. Because I’m not a vet or a lawyer or a real estate agent. I’m not even a whatever. 

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And even if you have the guts (and I love these people, please have the guts) to keep the conversational ball rolling without changing the subject or jumping out the nearest window (and even though I don’t love the people who do this, I can sympathise), it doesn’t get any better.

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Because I end up sad-bombing the conversation.

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Second, I am sorry for asking that question.

Because I know it’s bad. And I can see it in a person’s face when that was the wrong question. They go very still while they mentally navigate the minefield ahead, looking for the best route, or they give me this quick, sad look like I’ve betrayed them in some unforgivable way. It’s the same look our pet Jack Russel gave us whenever we filled the plastic baby’s bath and got out the dog-shampoo.

Maybe because they are worried that I won’t think what they do is good enough. Maybe they think they should be doing more. Maybe they just don’t want to sad-bomb me.

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And I always want to fix it.

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But I just met the person, or don’t know them very well, and maybe if I was a charismatic extravert I could go back on it, derail that train I just set in motion. But I can’t. I don’t know how. I ride it to the end of the line because I’m an introvert with social anxiety disorder and terrible at small talk.

So I’m sorry.

But I think the world would be better and people would be happier if “so, what’s your favourite dinosaur?” was an acceptable conversation starter, and “so, what do you do?” wasn’t.

It’s My Birthday!

And I am now officially on the late twenties side of 25. This has me concerned that by now I should have my shit together, or at least have a more respectable shit-together versus shit-all-over-the-place ratio. Or at the very least I should act more like an adult.

(If you’re thinking, ‘wait, you’re getting married soon and that’s a shit-together sort of thing to be doing,’ you might be right, except it’s really just an elaborate excuse to have honeymoon in New Zealand so that we can frolic with the hobbits and then drink them under the table at The Green Dragon.)

But then I remembered that I have a blog and am practically required to have my shit all over the place so that I have things to write and draw about. Who would want to read a blog about the adventures of some sensible and responsible girl who doesn’t chase people around her house making weirdly unnerving comsognathus noises, is so organised that she never runs out of toilet paper (yesterday, when I was the only person in the house, I realised post-pee that we had run out, so I was trapped until I worked up the courage to risk a slow-motion, tip-toeing tissue-finding expedition, which I am proud to say was successful, and thanks to my careful footwork, drip-free), and would under no circumstances interrupt already-complicated lists with parenthetical anecdote-overshares so you forget what the list was about in the first place and can’t remember what punctuation should go at the end? (Surprise! It was a question the whole time. I went back and checked.)

So maybe it’s okay.

And that’s  comforting.

But then I learned that Taylor Swift is the same age as me. And when I say ‘the same age’, I mean the difference between our birthdays isn’t statistically significant. I did the maths and everything. So, theoretically, we were born at the same time. And I even look like her.

Well, I have the same colour hair as her.

Almost.

You know, it’s what’s on the inside that really matters. And the point is that we are very similar and therefore I should have achieved a comparable level of shit-together-ness in the same amount of time, but I haven’t. When sixteen-year-old me made the decision to dedicate her free time to NaNoWriMo rather than releasing pop country albums, she had no idea of the ramifications that would echo down the years.

But I know what you’re going to say. Shake it off.

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Oh wait, I have chronic fatigue syndrome and couldn’t even win a dance competition against a jellyfish.

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Looks like you win this round, Taylor Swift and jellyfish. See you at 30.

A Quest to Emergency (Alternative Title: If this ever happens to me, I’m going to lie and say it was dragons)

Last week I got a call from my partner while he was at work.

“I’m okay, but I’ve had an accident!” he said.

My mind went straight to:

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The reality, I established after a few minutes of agitated conversation, was more like:

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He had dislocated his knee. He was waiting for the ambulance to arrive, and he stayed on the phone with me until the pain got so bad that he was having trouble not screaming. I told him not to worry, the paramedics would be there soon and I would find him at the hospital, and then he hung up.

I had no idea how I would get to the hospital.

It’s a good forty minute drive, and I am not well. Chronic Fatigue Syndrome (CFS) not only keeps me physically and cognitively exhausted, but also smacks me down ten times as hard if I try to push past my (very pitiful) limits. It lets me build up a crippling energy debt, and then it comes to collect. As you can imagine, it makes it (at best) difficult or even (at worst) dangerous for me to drive. I had sold my car a few months earlier. Now I was stranded.

I was used to CFS making me feel helpless, but this time I only felt rage.

My partner was injured, and I wanted to be there. After the surgery I had a couple of years ago, he had been with me every moment he was allowed. For a week he paid exorbitant hospital parking fees, ate cheap food from nearby take-away places, napped in a chair in my room and only went home when I had gone to sleep. Now I couldn’t even pick him up from hospital.

I was vaguely aware that there must be a rational way to sort this all out without making myself sick. Perhaps one of his work colleagues who had stayed with him would take him home. I didn’t have to personally go in. But I did have to, because that’s what you do when the person you love is hurt.

I decided that CFS wasn’t having this one.

I pulled out my Zombie Apocalypse List of friends. You know the friends I’m talking about. These are the friends who, when you really need something, just say ‘okay’ and help you. Everyone needs at least one of these people to call when the zombie apocalypse starts.

So I called one of my Zombie Apocalypse List friends and explained that I needed him to drop everything and drive me to the other side of the city and back because my partner had a non-life-threatening injury. I said that I really needed this.

He said, ‘Okay.’

Twenty minutes later we were on our way. I spent the whole trip monologing about the insanity of the cheap romance novel I am in the process of disemboweling to make paper roses for my upcoming wedding.

Just to clarify, I do not intend that as a generalisation of the entire romance genre. But this specific book was arrest-level crazy. Someone needed to sit those characters (and probably the author) down and have a serious talk with them about a) making life decisions, b) contraceptives and c) consent. There wasn’t actual rape, but there was rapey kissing, where one character forcibly kissed another who was saying ‘NO’ loudly and fighting to get away. The author seemed to think this was romantic, but it made me throw up a little bit in my mouth. Needless to say this scene is not making it to my wedding, even reincarnated as a paper rose.

My Zombie Apocalypse List friend listened calmly, understanding both the ick-factor involved in rapey kissing and that being tangential is just how I dispel nervous energy. I was very impressed and upgraded him to my Help, I Need to Bury a Body List. When I later told him this, he said that he could not in good conscience help me bury a body when a bathtub full of lye would do a much better job of removing physical evidence.

Duly noted.

We got to the hospital and promptly got lost. This was unfortunate because at this point I was definitely down to borrowed energy. We wandered around while I, using my health as collateral, built up a bigger and bigger energy debt. This meant that at the time I could push through, but the next afternoon I couldn’t move from the couch. I was so exhausted that standing up made me want to cry. Usually my loving, caring partner would do what he could to help me, but this time he was stuck on the same couch recovering from a dislocated knee. It’s a miracle we didn’t starve to death.

Maybe my CFS had a bit of a chuckle about all this. Maybe it even thinks it won this round. But you know what, CFS?

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In the end we found the emergency department (it was the big, red part of the building with lots of ambulances parked in front of it that we had already walked past several times) just as my partner, mellow from pain-killers, was given the all-clear and turfed out of his wheelie-bed.

We finally heard his story in full.

Apparently he was lying on the ground to examine some cables.

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He rolled over to get up, but his foot got caught on something.

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The rolling action popped his knee out.

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He waited half an hour for an ambulance (dislocated knees are not a high priority). He quickly realised that all this had occurred on top of an ant nest.

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But he couldn’t relocate because it hurt too much to move, so he engaged in a vicious war with the ants in which his only weapon was his bum.

…which he used to crush the ants. Not gas them or mesmerise them with a sexy dance or whatever else popped into your mind.

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See? Crushing them.

If you judge a war by its casualties, then he won. Hundreds of dead ants were later shaken from his pants. But if you judge it by any other means—such as who ends up with the land or dignity (or both) that was in dispute—then he lost.

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It’s a truly terrible injury story. I offered to improve it with a car chase and some dragons, but he seems happy with his ants.