Tag Archives: coping

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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Functional Adulthood

Some days are good days. I leap out of bed and I do all the tasks I am supposed to do. I am excited about budgeting, space-saving storage solutions and petrol discounts. I can feel the progress I make towards my sensible, well-thought-out life goals.graph showing functional adultIt’s the closest I get to being one of those go-getters who start the day by running a marathon and knocking back a disturbing green smoothie before going to work and earning a million dollars an hour by saying synergy and looking dynamic in front of graphs.

(But my graphs are better.)

The next day I wake up with the same tasks and the same goals, but it is not the same.

On this day I do not feel equal to my goals. They are too hard, too high, and I am too weak and too low. The small tasks I am supposed to get done are too much pressure. I cannot even bear the weight of basic human functions.atlas I think most people get this sometimes. Probably even the marathon-smoothie-synergy-people get a bit down that their graphs aren’t as awesome as mine.

Over the years I have tested different methods for dealing with this situation. My methods have had varying levels of success. Sometimes I try to do the things anyway.panicked doing everythingSometimes I give up.not getting out of bedOne time I read twelve books in a week so I wouldn’t have to think about all the things I wasn’t doing.reading all the booksSome of my solutions have been a bit extreme.playing deadNone of these help.

But there is something that does.build blanket fortsBuilding blanket forts makes me feel more in control. It reminds me things can be fun. When cuddled up in a blanket fort, I feel safe. I can even do some of the scary things without melting into a jellied heap of nerves.being productive in a blanket fortI wrote some of this in a blanket fort.

And yes, there’s probably a bit of latent agoraphobia at work there, but blanket forts make it work for rather than against me.

(By the way, that right there is the line between maladaptive behaviour and behaviour that’s a bit different but okay I guess. If it constricts your life, it might be a problem. If it doesn’t, boogie on.)

What a magical and wonderful solution to all problems! Rainbows and kittens etcetera.

… Did I at least have you until the etcetera?

It’s not a silver bullet. I don’t think there is one. Even actual silver bullets only work on werewolves; for vampires and zombies and regular people they’re just the same as normal bullets. Although I guess normal bullets are pretty effective against regular people, so silver bullets probably would be too. But using silver bullets on regular people seems like an unnecessarily expensive habit.

Also just generally an unnecessary habit.

Also a very, very bad thing to do.

(Please don’t shoot people.)

But blanket forts (we’re back on blanket forts) are better than the other things I’ve tried, even though sometimes I backslide to terrible coping methods anyway.

don't judge meBut at least I built a blanket fort first. That counts as productive.

Depression Lies

Lately my depression has been close to the surface. It whispers things to me and manipulates me. It tries to make me believe that I am worthless. I want to write about it properly, but everything I put down seems wrong, and I end up in tangles.

To have it swoop in and steal the words off the tip of my tongue makes me feel powerless. Loss of voice—silence—is a big deal for me. When I was a child my social anxiety was so strong that I often felt physically unable to speak in front people I didn’t already know well and feel comfortable with. So even if I can’t yet find a way to talk through it properly, I would like to put something about it up here.

I have a Gryffindor notebook that my sister bought me from Harry Potter World which I like to scribble in. With the help of my lovely assistant and trusty stead—doesn’t she look gorgeous in that silver dress?—I would like to show you my most recent scribble.

1lies

As you can see, some fairly standard depression imagery going on there. Darkness pouring down.

I didn’t have any words of my own to describe it or to cope with it, so I borrowed some. We live in a big, connected world, and chances are someone else has just what you need. This is humanity’s great advantage. We communicate.

So there are words, and if you can remember it when your brain has gone dark, it helps.

The Bloggess (hilarious, big-hearted, giant-metal-chicken-owning internet rockstar) says ‘depression lies’, and she’s right. It lies. It lies and it lies and it lies until all you’ve got are the lies and you can’t tell anymore which way is up.

So I’m trying to hold on to the knowledge that depression lies, and using that as my compass, the pictures turns around … Lovely assistant, if you would be so kind.

2lies

3lies

The page is still half-covered. The light and dark are in exactly the same proportions as before; it’s not gone. But now the warm parchment colour is on top, and I am anchored.

“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.