Getting a Slice of the Cake

Change.

A single, soft-spoken syllable. Yet it’s a powerful little creature, reaching into every corner of our lives.

Sometimes it’s an invitation – welcome and exciting.

Sometimes it’s a burden – disruptive and frightening.

It’s a bundle of contradictions: progress and retreat, secret and flamboyant, havoc and harmony. It can bounce into our lives with the speed and energy of a tornado and it can dawdle and loiter.

It happens all the time.

When big or difficult changes our lives, how well we manage them depends to a large extent on our attitude and temperament – to use a writing analagy, are we plotters (needing control of every minute detail), pantsers (flying free and seeing what happens), or somewhere in between? I’ve always tended towards the pantser end of the spectrum. This too shall pass is a good mantra to embrace. It’s helped me get through difficult times.

A meaningful mantra is always a boon, but changes, particularly unwelcome changes, need more than comforting words. They need practical solutions and flexible thinking too. For me, this has never been truer than in the last five or six years. In 2012, my health conditions decided they’d had enough of skulking around in disguise, dropping occasional, too-subtle, hints of their existence. Nope, it was time, they said – conspiring together in dark corners – to launch themselves in spectacular extravaganza.

There’s no doubt, life tends to shrink into a much tinier thing than you ever envisaged when chronic illness comes knocking on your door.

When your body refuses to behave the way it is supposed to, you’ve no choice but to adapt. Some adaptations are simple – if you’re forgetful but need to start taking regular medications, an alarm on your phone, or a daily pill-organiser box solves that problem.

Many are more challenging – how can you still maintain positive, and fulfilling relationships with friends if you have to cancel every arrangement at the last minute because fatigue and pain swamped you again? How can you maintain fitness if having a shower and putting on clothes takes a monumental effort? How can you be the parent, partner, employee you want to be, if every day sends your energy account into overdraft?

Often, with chronic illness the simple answer is, you can’t – not like you used to. You can’t, because what you wanted to be was based on your needs and capacity before you were ill. It doesn’t mean you can’t have positive, fulfilling relationships with friends, but it does mean you have to change how you interact with your friends – maybe even change your friends. Our friendships fluctuate all our lives anyway – you might be lucky enough to still have the best friend you met your first day of primary school, but there are plenty of others that will have come and gone, or changed in nature, along the way. The ones that went off to university when you took a gap year to go travelling, or the ones that were surging up their career ladder while you were knee-deep in baby nappies.

Some things are insurmountable. For me, one of those things was my job. I’d started off thinking when the doctors find the right treatment and I started to get better, I’d be able to go back to the classroom. If not full-time, maybe a four day week. Or two days. Even relief teaching, doing single days here and there each term. Usually, I’m a fast learner, but it took me a year to figure out holding down any kind of job outside of my home was not going to happen. ‘Better’ is calibrated at an entirely different rate when you have chronic illness. There is no setting for ‘not ill anymore’.

Some things only seem insurmountable. Perhaps because we are used to making most decisions based on a big picture overview. If friends ask you to go shopping with them on Saturday, yes or no generally depends on what else is in your diary (or how much is in your wallet!). The details come later.

When you have a chronic illness, the details become the decision.

Because the demands of a day shopping – the journey to get there, the crowds in the mall or on the high street, the music and air-conditioning blaring, the walking around for hours, standing around in queues etc are beyond your physical capabilities now. You want to be with your friends but too often, the decision you make is No.

Days of elevated pain and intense fatigue are a hell of a price to pay for a few hours enjoyment.

That’s the day-to-day reality though, with many chronic health conditions. Every action has a price attached.

But even when change is something that happens to us, beyond our control and definitely against our wishes, we don’t have to be like a leaf tossed around in a gale with no way of steering its course. We can be a tree, with roots in the earth, bending and bowing before the gale, but never quite breaking. We can learn to say Yes, and focus on finding ways we can participate, instead of missing everything.

I wrote recently about going on a weekend writing retreat. Once, I would have rocked on up there at 5pm on the Friday afternoon, all synapses firing, and ready to wring every last drop of pleasure out of the weekend. That was before the internal workings of my body decided they’d had enough of skulking in the shadows, masquerading as a healthy person.  Now, if I am to get any pleasure without wringing every last drop of energy out of me, I have to get strategic.

Strategy meant figuring out the core components I wasn’t prepared to miss, and putting everything else in the ‘Maybe’ basket. Making it to the two morning workshops was top of the list, and one of the afternoon sessions.  I didn’t need to go to the welcome session, or the barbecue on the Friday evening, which would have sapped me of energy before the weekend proper kicked off. I went to the free-writing session later that evening, but I had to miss the Saturday evening open-mic session or I’d have been too exhausted to make it back again on the Sunday morning. And I left at the end of the Sunday morning workshop, instead of staying for lunch and the afternoon discussions – it was a choice between staying for the afternoon or being able to drive myself home.

Many people in chronic illness communities say they can’t go to family events or fly to a conference, or… or… or… Can’t because the body isn’t up to the task at all, or because the task will be difficult enough at the time, and the aftermath of increased pain and fatigue will be days laid-up in bed.

Yet sometimes, can’t is because we are looking at the big picture instead of the details. When we bring the details into focus, that’s when we start to see how we can participate, even if it’s only for a fraction of time.

And isn’t a fraction better than nothing at all?
If I can’t bake the whole cake any more, I’d still like to get a slice.

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