Rest – Silje Elsrud Yttervik

The Day That Got Away

A story on mead, migraines – and learning that joy needs a rest too.

Soooo first off, for as long as I can remember, Mondays have always set the tone for the current week. And this week, my Monday was packed with plans.
Good Plans! – You know, the ones that sort of filled up my notebooks and planners – making me feel productive before the week even began.

Instead, this Monday, I spent the entire day in bed.

A massive migraine had settled into my head the night before, at the same time as my body was dealing with the heavy stomac pains that comes along with my other «joys» of menstruating.
Now, mind you – neither of these things are new to me!
But it is especially painful when it arrives early on in the night, as it results in waking up in pain every hour – if I’m lucky enough to sleep at all, that is.

So it started with me skipping my physiotheraphy workout. And while I hate skipping it, I felt it was the most responsible thing to do. If my migraine weren’t enough, the fact that I had barely slept, and was on a new hormonal cycle was kind of like a perfect concoction for me getting a massive seizure. So I just stayed in bed. At some point during the day I ate something, then eventually fell asleep.

And somewhere between wanting to stop feeling aweful and wanting to get things done, the day quietly slipped away from me.

For a while I felt frustrated. Kept thinking about everything I had intended to do; everything I still hadn’t done – that would now have to wait.

But then, as I lay there staring at the ceiling, I realized something.
This Monday (it’s currently Tuesday), did not happen in isolation.

In fact, only a few days earlier, I had spent an entire weekend doing things I genuinely love.

On Thurday, my family and I sat at the dinner table playing cards and talking about plans for the summer.

On Friday, some friends and I gathered to make mead. I don’t know how many have ever tried it before, but there is something strangely satisfying about mixing old traditions with good conversation – in anticipation of something that will not be ready for months.

«Making Mead»
Image by Silje Elsrud Yttervik

Truly, making mead – like the brewing of ale or the production of wine, teaches patience in a way modern life rarely does.

Then, the following day I met up with my girlfriends for a prosecco lunch, celebrating the hostessess’ birthday.
As usual there was laughter, stories, and the kind of conversations that leave you feeling lighter than once you arrive. Some of my girlfriends brought their babies, others were highly pregnant.

For three days straight I spent my time feeling happy and having fun with other people I love and cherish.

But in a way – perhaps that was the problem. Not the love, the fun and the happiness, mind you – but the fact that all of these things also costs energy.

For many of us (disabled or not), energy is not a limitless resource. It is a budget.
Except, unlike with money, you cannot just borrow more when you run out.

Looking back at it now, I realized that despite packing my weekend with things that filled my heart, I forgot to leave enough room for recovery afterwards.
Because I’d spent time with people, talked, laughed, travelled, socialized and enjoyed myself immensely.
And afterwards, my body sent me the invoice.

This is not to say that I did anything wrong!
But even joyfyl, beautiful things require energy. And I think this is one of the strangest parts of living with illness.

Because, the word often talks about rest, as if it’s something you earn after hard work. But for many disabled people, rest is not a reward.
Rather, it is a form of maintenance that might lead to massive consequences when you attempt to skip it.

Thus, sometimes the most important thing we can do, is to scedule recovery the same way we sedule everything else.

Lately, I have realized that I need at least two days each week where very little is expected of me.
This means;
– days without appointments
– without social obligations
– without projects

Days where I can simply exist.
As my body functions ten times better when I respects it’s limits rather than argue against them.

So, as today is Tuesday – I can easily say that yesterday was not the productive Monday I had planned. But it can still function as a practical one.
As a reminder that a good life is not built only from the things we are able to do – but also from the space in between them, as we learn who we are. And what we need.

Sometimes the most productive thing a disabled body can do, is to survive the day withouth making tomorrow even worse.
– Silje Elsrud Yttervik

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A small task for you, reader…

This week, write down one thing that made you smile.
This does not have to be a productive thing,
nor an impressive thing.
Just something you smiled at 🙂

Then take the time to remind yourself;

A good life is built from moments, not milestones.

– Silje

You Can’t Build a Life You Don’t Have the Energy to Live!

Why rest is not a reward – but a requirement!

Despite my happiness of being back home and somewhat «in route» again, as they say; the past few weeks have reminded me of something I’ve long kept trying to forget:
That it’s my body and my mind that decides my days.
It’s not my plans, nor my ambitions.
And certainly not how much I actually want to do.
No, my body is the decider. And this past week it has been very loud about it.

First of all, my seizures have come back again. They’re not exactly the same as before, but big enough to take over my being; with moments where I say and do things I don’t fully control, that I don’t remember, and that my eyes can’t see.
Then it has taken everything from 5 – 30 minutes afterwards for me to properly ‘come back’ to myself, and understand what has happened.

And again, after all of this, there is a kind of tiredness, very difficult to explain to those who’ve never had a seizure before; but in short – it’s like feeling like you’ve just run a marathon, only the marathon is in your head, and may just have lasted a few minutes.

But here is the thing: most epileptic seizures are short. (In fact longer seizures can be dangerous!) But a minute of seizure can be enough to need several hours of relaxing time. This is not only in terms of physical restitution, but also mental as well – and something that can make even the smallest act feel like too much.

When the plan changes – again

During the time I’ve spent since coming home, I’ve had to ditch at least a dosen plans. Small ones, maybe – but no less important.
– I was hoping to be able to take the buss again by myself.
– I was hoping to slowly return to a daily rhytm that at least felt a little more independent than my current life.
And now, due to my body and minds’s distrust in my own wishes, this may not be possible – at least not yet.

For me, this shift is both practical and emotional. Because, every time my body redraws the limits, I – yet again, have to adjust my life around them, let go of something I just recently started to believe in, and choose an even slower pace instead.

You can’t build on exhaustion

Regardless of what you’re trying to build in life, I think there is a quiet pressure in the world to keep building. Even when you’re tired. To keep improving, even when you’re completely burned out, and to keep moving forward – no matter what happens.

But the truth that we will all be forced to face is this;
You cannot build a life on top of exhaustion.

I mean, try it all you want, but your life won’t be sustainable – and thus you won’t be able to actually live in it.
Because, days built on pushing through, ignoring signals and borrowing energy you don’t have, is the key to a loose, rocky foundation. It might look fine from the outside, but the inside has already started collapsing.

Rest is not something you earn

I think this is where many of us get it wrong. We treat rest like a reward for something.
Something you get after you’ve done enough ( I know I have!)
Or after you’ve proven yourself to the square-faced beaurocracies.
After everything else is finished.

The problem with this, is that for bodies like mine, and for many others’ – rest and restitution is not optional. Instead, it is the thing that makes anything else possible.
Withouth rest, there would be less stability, less clarity and no real progress.

Learning to live smaller – and more honestly

So for now, my days will be slower. This means days that are considerably shorter, with much more sleep and rest-time. At certain moments of the day they might be quieter, and more limited than what I would personally prefer. But whether I prefer it or not;
– A good morning routine
– A calm evening routine,
– Massive amounts of sleep
– And only 1-2 smaller things in between, are the main foundation of what my current body needs in order to actually sustain itself.

And while I know this is in my best interest, it is still difficult for my ambitious mind to accept. Particularly, as we are taught to measure our lives by how much we do.

So, for me – this might have to change.
Instead of looking at producticity as a measure for success, I might have to look for other signs. Like Stability. / Like the ability to rest when in need. / Like the skill to listen to your own body, and act on it, before things get even worse.

And sure, what this actually means for me is:
– Physiotheraphy with strength-training every week, to minimize my risk of osteoporosis
– Only taking the buss under the care of someone else
– Accepting admittance to the hospital sometime again this year,
– And changing current medication even further
It means changing my timelines yet again.

And while I don’t like that, I also know that ignoring these things won’t make them go away. Much like just pushing through won’t make me any stronger – it will only make me more exhausted, as the rest of the world expects more and more, based on what I already have already accomplished.

A different kind of building

So currently, I am trying something else;
to build a life that i actually have the energy to live.
Even if it looks smaller, slower and less impressive from the outside. Because, If you think about it; a life that fits your own energy – is worth more than one who constantly drains it dry.
And maybe that is the real work:

Not building the biggest life possible, but building one that holds.
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A small task for you, reader…

Tonight, ask yourself:
«Am I building a life I can actually sustain – or one I am constantly trying to survive?»
Remember, you don’t have to fix it all at once.
Just notice the answer.
And then, choose one thing tomorrow that could make your life a little more livable – not just more productive.

– Silje

The Joy of Doing Less: A Disabled Summer Story

July arrives like a golden wave – fast, full and blinding. Everything blooms – everyone moves, and I… pause.

Personally, I’ve always perferred the colder months. In winter, society seems to move closer to my rhytm; the days are shorter and slower, people operate slower, and general rest is not only expected, but also respected.

Summer on the other hand, tends to surge forward. Everyone seems to be bursting into high-gear; vacations, festivals, sleepless nights – doing more, going faster, chasing light as if its running out (which for those of us in Scandinavia it litterally is come fall).
Additionally, the warmt of summer is pressing, and the air grows thick with newfound humidity. And I, in my invisibly disabled body, feel the gap widen between what the world expects of me, versus what I can offer…

So, as you can probably imagine, I’ve never felt entirely at home in the heat of summer. The sun shines bright, but I crave the shadows. Not out of sadness – but for sanctuary and the need for rest.

Throughout my life, my disability has taugh me many things. Perhaps the deepest of these is this;
Rest is not weakness. Rest is wisdom.

Especially (but not only) in the Western-world, exhaustion is treated like a badge. In such cultures, doing less is seen as a failure. But, for disabled people, doing less is often not a choice – it’s a lifeline! And in a season that celebrates motion, brightness, and constant energy, it can feel like being completely out of synch with society.

To use myself as an example; yesterday I had a lunch with some of the people I go to physiotheraphy with. The buss home takes about 20 minutes, and as I was feeling pretty good, I decided not to call a cab (which takes only 5 minutes, but is extremely expensive). Halfway home I apparantly had a massive seizure on the buss, the first ‘buss seizure’ since moving back here five years ago. I knew this was a possibility, as I’ve been having majour seizures every week for the past two months, but I felt alright and thought I would manage.
Luckily, a very kind gentleman called the ambulance, and I was safely followed home. However, it took me over 30 minutes to fully get back from the seizure, and I slept the entire rest of the day.

I had many plans that I wanted to get done yesterday, but ended up doing none of them. This is not uncommon. For many disabled people, summer becomes a season that exposes difference. Because, while other’s need for rest stems from the nature outside (such as the lack of energy with winter’s lack of sun), disabled people – especially those of us who suffers from fatigue; we experience this all year around, as our lack of energy comes from genetic-, neurologic- or other physical, internal issues.
So when others accelerate during the summer, our limits become more visible. When other’s glow, we might ‘wilt’. This is the reality of having disabilities. And for many of us, resting is a daily necessity.
As disability-advocate As Tricia Hersey of The Nap Ministry says:

«Rest is resistance. Rest is a beautiful interruption to a system that views us as machines.
It’s a divine right. We will rest.»
– Tricia Hersey

Resting interrupts the demand to always be «on», always be producing and always be performing. And that interruption can be healing – not just for the body, but for the soul. So while others sprint intoo summer, I will make a different choice. By slowing down on purpose, claiming stillness – not as defeat, but rather as depth of joy.

Because, joy isn’t always loud, fast, sweaty or crowded. It doesn’t need fireworks or festivals (althought even I can enjoy that at times!). Instead, the depth of summer joy can live in enjoying a slow morning coffee while listening to birds chirping, in reading a book in a quiet, shadowy corner, in picking (and tasting!) ripe forest fruit – or in wearing soft, easy – breezy fabrics while smelling the air. It lives in drinking cold drinks, taking a nap without the fear of wasting time – or very, very carefully taking a swim in the lake.

No matter how small, these moments matter. They might not be what summer ‘should’ look like. But they are what summer looks like too me. And that is enough!

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In the North, we know how to rest. We know the hush of snow, the stillness of night that falls early and stays long. In winter, everyone understands fatigue, and there is space for slowness.

But the summer season asks us to shine. And when we cant – when our bodies protests, and protects us – it’s very easy to be left behind.

But, what if we didn’t see our own rest as retreat, but rather as a return –
To breath
To joy
To being, not performing.

“Rest is not idleness, and to lie sometimes on the grass under trees on a summer’s day, listening to the murmur of the water, or watching the clouds float across the sky, is by no means a waste of time.”
– John Lubbock

So this July – in order to create your very own Disabled Summer Story, I invite you to do less – not out of lack, but love.
I invite you to celebrate rest as richness. To notice joy not only as large spectacles, but also as small seeds.

Let your summer be slow. Listen to your body. Let joy come gently. Because, you are not late. You are not lazy. You are simply living at your own pace – and that is beautiful!

And if the world races ahead, let it!
You are not behind.
– You are exactly where you need to be.

– Silje