Tag 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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Impromptu, Not-Funny Thoughts About 2016, Life and Depression. Also Cats.

I have seen a lot of jokes and not-so-jokes about 2016 kicking humanity in the tender bits. It’s a bit weird for me because 2016 has been the best year of my life. (So far).

A year ago I was so unwell with chronic fatigue syndrome and fibromyalgia that I was mostly bedbound. Although I had planned to spend my post-uni mid-twenties traveling the world, I found myself at age 25 struggling to shower. My career hopes were dead. And I was in the surreal position of navigating disagreements with people about trivial wedding things when deep down I believed that we were going to have to cancel the whole thing because I was. Just. Too. Sick. and getting sicker every day.

And then one day in November last year I woke up and it was different. I was getting better.

Since that day I have got married, crab-danced to Rock Lobster with my family, travelled internationally, taken up writing and illustrating my comics in a professional manner, opened a store for my art, begun writing a novel and done a bunch of other awesome stuff.

I feel like I built myself a new life. Not the same life I had before and not an entirely better life. There is no escaping that I am still unwell and that this imposes limits; it is unlikely that I will ever be financially independent or capable of travelling as much as I had hoped. But in other ways it is better. In other ways I am free.

And right now, I am reducing my dose of antidepressants (with the knowledge and guidance of my doctor). This is something I have not successfully done since I was first diagnosed with depression and anxiety seven years ago.

It has been a phenomenal year for me.

But yesterday I spent the afternoon in bed pretending not to exist, unable to face the world.

There is a 2016 story that is better known than mine. I, along with the rest of the world, have witnessed bombed houses and lost toddlers. The world hardened against immigrants and refugees. Brexit happened. Mass murders happened. Australia, my own country, made its refugee policies more and more revolting. And then, finally (fingers-crossed), the US election.

This a personal story, not a political debate, so I won’t go into detail on why it was so bad. I’m far from apolitical, but I find it hard to cope with these discussions. I prefer to avoid the topic and fob off questions with jokes.

Jokes feel wrong today. So does being serious and heaping more sad on to the big sad pile. So does staying quiet and letting it go unacknowledged. Everything feels wrong.

Yesterday I spent the afternoon in bed.

The news does this to me sometimes. I am a bit broken. Not all my moving parts turn the way they should. I know this. The last time I tried to reduce my antidepressants I was assaulted by media images of the tsunami in Japan and flooding in Queensland. I heard so many stories of shattered lives and saw so much destruction. Overnight I became hollowed out and empty.

And yesterday I spent the afternoon in bed.

But today I got up.

I did some gentle yoga—partly for the mindfulness and partly because my body lets me now. I had a cup of tea and ate breakfast. I got out in the sunshine. I drew some cats.

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Because I needed them for my next story. And also just because I needed them.

And I will be kind. To myself and to others. A lot of people are feeling unsafe today. I am feeling unsafe today, and I am a white, middle-class, cis-het non-Muslim half the world away. I can’t image how people in America, particularly minorities, are feeling. So I will be kind. I will be kind today and tomorrow and every day. I will make kind decisions, always.

I will keep building my life, one cat bumhole at a time.

I do not want the world to empty me this time. Instead I will fill it. I’m not sure that I am well suited to political activism, at least not beyond keeping myself informed and standing against bigotry in my personal life, but I have other things. I have stories and art and kindness and, on other days, humour.

With these things I will fill the world, drop by drop.

Cat bumhole by cat bumhole.

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.

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.

“Be Positive”: As helpful as the Microsoft Paperclip

And who wants to be like the Microsoft paperclip?

I have chronic fatigue syndrome (cfs). One day in March last year I came home from university placement feeling drowning-tired and crawled into bed expecting to sleep all weekend and be better by Monday. That was over a year ago, and I’m still waiting for that magical Monday.

There’s a lot about having cfs that sucks (shocker). It sucks that on bad days I’m so tired after showering that I need to lie down. It sucks that my once-serviceable memory appears to have sprung a leak and I now have to make checklists to remember basic daily things. It sucks that reading is tiring, that writing is even more tiring, that if I draw too many blog-pictures in a day I start to feel sick.

It sucks that my short-term goals had to be dramatically altered—from ‘start a career’ to ‘maintain a blog’, from ‘make money and save up for cool stuff’ to ‘maybe sweep the floor if you’re feeling up to it’.

But what I hate the most is when people, usually after hearing about my altered goals, tell me that I shouldn’t think like this, that I’m being ‘too negative’ and I should ‘be positive’.

I hate this for a whole bunch of reasons. One is that it’s actually normal to feel bad when bad things happen (and unhealthy to bottle that up). Another is simply because being told what to do and how to feel is a universally loathsome experience. But the main reason I hate it is because it twists the word ‘positive’ into something inverted and monstrous. And I think the reason I feel so strongly about it is that because before I got sick it was my view of ‘positive’ too.

In this sense of ‘positive’ my recovery is not only certain and imminent but it will be the glorious restoration of my life. To ‘be positive’ I must stay focused on that and ignore this ugly illness business, which is ‘negative’.

This version of ‘positive’ is saying that being sick is being broken. It says that I don’t have a life now and I shouldn’t think about and plan for this not-life.

Here’s the thing. What if I never get better?

You want to know something scary? Not everyone recovers from cfs. Most people—the vast majority of them, in fact—do improve, but some don’t, and there’s no way to tell where I fit into those statistics.

So, hypothetically, what if I never get better?

What if I never get better and the only things that matter to me are things I can’t do while I’m sick? What if I spend my entire life planning for when I get better rather than living now? To me, that doesn’t sound like a good mindset. That is not positive. I don’t want to die of old age 60 or 70 years from now bitter that my ‘proper’ life was stolen from me when I was 24.

Don’t tell me that I’ll get my life back when I am better.

Tell me that I have a life now and will have it until I die, whatever else happens.

It won’t be the same life I would have had if I’d never become sick, I know that. Like I said, there’s a lot about having cfs that sucks. Sometimes that makes me sad. But sucky things happen in all lives to all people. Cfs might give me a different life with different sucky things, but it will not give me lesser one.

And I’m not writing this to convince everyone else to rise up in chorus and say the things I want to hear. I’m writing it because maybe I can convince myself to.

Because I will have a life. Just watch me.

The Importance of Basking in the Glory of Small Victories

Recently* a friend told me something surprising.

She said that I was impressive.

It took me some time to soak this peculiar idea up. I am far too used to thinking of myself as the opposite, and so the idea that I might be considered ‘impressive’ was altogether too strange to be believed. I mean, yes, the website header does include a cartoon picture of me riding a Tyrannosaurus Rex which cuts a pretty impressive figure, but spoiler alert, that never actually happened. That’s just artistic license.

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The cold, hard reality is that I’m 25 years old and I’m useless at most useful things, such as social interaction, basic time management, showing initiative, caring even slightly about money and physically doing things. I don’t even have a job or any prospect of getting one until my CFS improves.

If you’re thinking that I’m being hard on myself and want to assure me that without CFS I would be a dinosaur-riding force to be reckoned with, then thank you, really, that’s very sweet. But you’re embarrassingly wrong. My maximum pre-CFS coping level just about covers going to the supermarket. That is to say, sometimes. Certainly if it isn’t peak shopping hour. Actually even then still maybe not, because when push comes to shove I can drink my tea without milk, and let’s be honest, the toilet paper situation is never really desperate until you’ve also run out of tissues.

Being impressive is a nice idea though, and it grew on me. Around this time I also realised I hadn’t made a blog post in a while, so I made a list my achievements of the past few months and have taken the time to publicly gloat over them. Opportunities to rub victories into defeated opponents’ faces are thin on the ground when your general moral policy is not to be a jerk (disclaimer: general moral policy does not apply when playing Mario Kart). As such, I think it’s important to make the most of defeating non-person things like brain-fog or the knit-1-below stitch.

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That’s right. A whole jumper. A whole jumper that looks acceptable and doesn’t have unplanned holes. It’s my first knitted jumper. Before this jumper, I had only ever knitted scarves, blankets and headbands. I started it last winter and finished it in summer, but I didn’t think my victory could be properly relished without wearing it, at least for a day.

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A popular way for movies and novels to illustrate a significant change in a person’s life is to show that person in two similar events before and after the change. It seems like a fun and effective trick, and I simply can’t resist giving it a try.

For me, the beginning of 2015 was something like…

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… which may seem bad, but it’s actually really good because the beginning of 2014 was more like …

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… as it occurred just over 24 hours after I had major surgery to remove a begin but ridiculously enormous ovarian cyst (seriously, it was 20cms across and weighed 1.5kg).

So I’m counting that as a general life improvement to feel good about.

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For some reason I tend to not count university as an achievement. I’m not really sure why.

I say things like: “I’m useless. I haven’t done anything in the last few years.”

And my friends give me funny looks and say: “Didn’t you get two degrees? I’m sure I remember you whinging about assignments, pulling all-nighters and babbling about the Dewey decimal system while sobbing uncontrollably. If you need reminding I can produce photographic evidence of you tossing a mortarboard in the air with apparent glee.”

So this time I will count it.

In November I completed my final semester of my library and information management graduate diploma. After becoming unwell, I had to study part-time and externally. It was still hard. The effort I had to put into coursework gave me near-constant brain fog and made me crash all the time. I was accustomed to getting good grades, and it was soul-crushing to understand what was involved in an assignment but have my brain and health fail me so utterly that I still could not meet all the requirements. I drifted in a never-ending sea of confusion, vice-like headaches and exhaustion.

My grades dropped.

But I passed.

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I posted last year that due to ridiculous levels of brain fog brought on by university I found myself incapable of reading Moby Dick. At the time I had to accept my limitations and stick with re-reading Harry Potter instead.

But know I have finished university and I have more freedom in what I read. I don’t have to throw every last ounce of energy at textbooks and essays. Now I can once again direct my energy toward dense, wordy books.

So I went straight back to Moby Dick and totally crushed it.

… in the mature, intelligent, literary sense of ‘totally crushed it.’

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If you have some victories to bask in the glory of, please do so in the comment section! It will make you feel warm and glowy, and who doesn’t like feeling warm and glowy?

* When I started writing this ‘recently’ was a valid word choice, but at the time of posting ‘a couple of months ago’ would be more accurate. I kept getting distracted and not finishing this post, primarily because it doesn’t have very many good jokes and I find jokes motivating.

 

Scarves for the Promotion of Elvish Welfare

Call me invalid. I have had chronic fatigue syndrome for a little over six months now, so lately I haven’t been able to do a whole lot.

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Initially it wasn’t so bad. That is to say, it always sucked, but at first it was a fresh situation and it was easy to be optimistic. Less so now. Apologies about this. I’ve been trying not to sulk, but it’s becoming difficult.

The real problem is the brain fog. I’ve never been a very active person, so it hasn’t been too hard to limit physical exertion. Don’t get me wrong, it’s still been frustrating, inconvenient, limiting and an all round pain, but I’ve found I can do it and still have a life that makes me happy.

I’m having a lot more trouble limiting cognitive exertion. The big part of this is that the university semester has just started up again, and although I only have one subject for my post-grad librarianship course, it’s a course on readers’ advisory, which means a lot of reading. Like, a lot. And reading is cognitive exertion. And cognitive exertion leads to brain fog. And brain fog is utterly debilitating.

You know when you read a sentence and you understand every single word in that sentence individually but together it makes no sense, and you’re left wondering if the sentence actually is nonsense or if it’s just you missing something? Brain fog is like that, but with everything in the entire world and you know it’s you. When I have brain fog, I can’t put things together meaningfully. Things I’ve never thought of as cognitive activities have suddenly become challenging, or just downright impossible. These are things like remembering things, following a recipe and cleaning the detergent compartment of the washing machine.

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This issue has been lurking for a while, but it has been manageable. I found that re-reading easy things is relatively gentle on my mind when I turned to Harry Potter after brain fog forced me to abandon Moby Dick. But now that I have to read academic writing and chew through a mountain of fiction for uni, I get brain fog most days.

Lately I’ve been doing a lot of knitting and feeling guilty. The guilt is because I feel like I should do as many useful things as possible, because I can’t do many things and my partner has to pick up the slack. Expending energy on knitting means I’m less useful than my maximum useful output.

But I’m knitting anyway, for a number of reasons.

The first reason is that I like it, it doesn’t tire me out that much, and it neither brings on nor is impeded by brain fog.

The second reason is that my knits are potential bribes for people I know in the real world to come and visit me. So people who are nice enough to come and talk to me might just get a beanie out of it.

It was probably a mistake to put that information online. I have no illusions about my knitting ability, and the promise of free knits would be more of an incentive to stay away. In fact, I’ve never even knitted a beanie. I probably can’t. Scarves and headbands are more my level.

The final reason I found in the pages of Harry Potter. And it is the most important, I think.

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It means I’m free, even if it’s just a little bit. I produce something. I have something to show for the time I spend knitting. I might have to study from home, I might have to abandon hopes of getting job any time soon, I might struggle to read or write, I might lose my train of thought and forget simple words, I might not be able to walk more than a few hundred meters on a good day, but, damn it, I can still knit just as much and just as well as if I was healthy.

And ok, Dobby the house-elf being freed by clothes and then wearing a crazy collection of knits as a symbol of his freedom is not exactly like knitting to rebel against the confines of illness, but whatever. It helps me.

Initially, this is how I wanted to end this post:

Tenuous connection or not, tomorrow I am going to put on all my scarves, yell “Dobby has no masters!”, dive back into Moby Dick and get my white whale.

I was excited about that ending. Writing it made me feel like I could do anything, and I was determined that I would. But that’s not how this post ends, because of reality.

Moby Dick would be hard through brain fog anyway, but I can’t even try chipping away at it while I have so much uni reading to prioritise. Maybe at the end of the semester I can try it again, but not now.

Also, that ending was to have a picture of me, mummified in scarves, on a ship chasing a white whale though a storm. I tried to draw it and couldn’t. It was the shape of the ship and making it work with all the background shapes like waves and clouds and the whale. My mind was all foggy and I couldn’t draw.

This was, to date, the most upsetting thing that chronic fatigue has done to me. My failure to clean the washing machine detergent compartment was defeating and degrading, but my ability to clean a washing machine detergent compartment has never been important to me as a person the way my ability to express myself through words and pictures has.

So I couldn’t end like that, with a “screw it, I’ll do it all anyway!”, because I can’t. I can’t. I can knit scarves, but I can’t chase whales. I need to accept the things I can’t do and find victories in the things I can.

I can’t guide that ship through the fog in my head.

But I drew something else.

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I’ll end with this.