bewilderbrain

Spoon theory, hidden energy drains, burnout spirals, time blindness…how do we work with our unique energy challenges?

This morning I had to do it again.

After the school run I had to have a lie down.

Not a ten minute curl up. An hour long lie down, in a state of something approaching sleep, with the curtains closed, soft distracting noise and an incense stick burning. Sort of fine tuned sensory deprivation if you like.

You see, I didn’t have a bad nights sleep, by my standards, or a drink last night, or a 4am start, and I’m not lazy. I have ADHD.

For an ADHD brain, the morning routine, and the school run, contains a totally unique combination of stressors.

In common with many of us, mornings are not high functioning times for me anyway, but when you have school age children there are:

Oh. So. Many. Steps.

To remember.

To complete.

With ADHD, the routine of getting yourself out of the house, “appropriately” washed, dressed, fed and armed with all the things you have to remember for that day is absolutely massive.

When you have smaller people, particularly those who might have executive function issues themselves to contend with, you add in such an inordinately gigantic amount of extra steps and things to remember that some days it seems almost insurmountable.

Deep breath…

There is the breakfasting, the washing, the toothbrushing, the dressing, the arguments about dressing, the myriad of lost items put down a moment ago (by all parties involved), the random inexplicable questions and worries that intrude into neurodiverse brains when they are trying to get ready for something, the assembly of lunches, dealing with meltdowns over things that seem trivial, the doing of hair, the arguments about the doing of hair, the collection of further items that might be needed such as P.E bags or reading books, FINDING SHOES! this one deserved capitals as we all know, coats and other relevant outdoor gear, and shepherding out out of the door.

But wait! The relief of a successful exit is shortlived. Now we are navigating all the outside obstacles, hypervigilantly checking for all surrounding dangers, trying to steer children with as little propioception or directional awareness as we have ourselves whilst they ask simultaneous questions about the functions of the universe, tell detailed stories about their dreams, spend half the journey meowing like a cat…etc.

And, while you are doing this, you are trying to filter out the intrusive noises of the cars, of the people talking and children laughing all around you, mentally calculating approx distances to be able to avoid needing to walk too close to people coming the other way, trying not to explode at the people walking slowly in front of you, constantly worrying that someone will say hello/ stop you to talk (insert masking face here), having to talk to teachers at the gate about queries with your child/ lost forgotten items, emails from the school you didn’t quite understand, and whether you have got the day right for a particular after school club.

Trying to make sure your kids go in happy. Spending the walk back (or sometimes the rest of the day), worrying about whether they were, along with going over any social exchanges in your head repeatedly,and cringing about them.

Now, I don’t know how a neurotypical brain works, and I imagine that the school run holds a good degree of stress for most people. But I don’t think it’s quite like this. And lets be honest, my little list of things that make the experience stressful only really scratches the surface.

So I got in today and I felt, and was frustrated by, the level of my exhaustion, at a little after 9am. But….

I recognised it.

Even as little as six months ago, I would have arrived home in this state and, as I perceived it, valiantly attempted to continue with the plans and requirements of the day immediately. Why?

Because you feel like you should
Because you feel guilty for resting
Because you are STILL, comparing yourself to the expectations of a neurotypical day, executed by a person with a completely different brain function to your own.

Needing to rest as often as we do is frustrating, but we have to remind ourselves of the actual level of work our brains are doing to accomplish apparently simple tasks.

If the average persons brain is a car with a 2 litre engine, plenty of reserve power, appropriate gears for hills, (or areas where life becomes a little harder or more complex) an ADHD brain is trying to drive all the same routes with a 3 wheeler (probably with an embarrassing horn) or actually, on a bad day, a donkey and cart.

Moreover, when you have more than your own neurodiversity to contend with, that three wheeler is not only trying to power its own journey up the hill, it also has other brains, or 3 wheelers to tow up the hill.

I’m not quite sure how much further I can stretch this analogy, but suffice to say that the load is heavy, the tow cable is unreliable, and the possibility of running out of fuel before you get to the top is very real. Every day.

Are you familiar with Spoon theory? Spoon theory is a clever explanation a writer with Lupus came up with to explain what it is like to live with a chronic illness to her friend. Link here to her story.

Spoon theory has become commonly used as a descriptor for energy rationing not just in chronic illness and physical disabliity, but also within the world of neurodiversity.

In brief, (and not nearly as eloquently as the original) Spoon theory states that while an average (non disabled, neurotypical) person, might in theory be able to accomplish indefinate, and sometimes huge amounts, in one day, in someone who has a physical, mental disability, or neurodivergence, energy is always rationed, and at a premium.

She describes this as having a certain number of spoons available to you to get through your day. The severity of your condition will affect the number of spoons or energy points that you start your day with, with some having many more than others. Depending on the unique factors that cause your function to be different to the norm, even small, everyday tasks will use up spoons.

In the context of conditions like ADHD and autism, we might consider that depending on your profile and strengths, you have a varying amount of spoons available to you in different areas to get through your day.

Perhaps your executive function is in the medium range for ADHD, and you have ten or more spoons available to you for decision making, planning and organising that day.

But maybe your social anxiety is quite severe, so you might currently only be allocated two social spoons per day. For you, one conversation with a colleague, teacher or parent, and the masking that frequently accompanies this, will use up a spoon.

You now have one spoon left. You were going to call a family member, as its overdue that you catch up with them, even though you find it hard. Unfortunately however, you had to collect a child from an after school club and a parent stopped you for a lengthy chat.

Bam! There goes that final social spoon

You no longer have the social energy remaining to face a phone call too.

I think spoon theory does a wonderful job of giving an overview of the effects of mental or physical limitations, and the extra effort that is constantly required to navigate everyday tasks.

It doesn’t need to get into a set of intimidatingly detailed neurological or physiological reasons why energy is used up more quickly, and is more precious – it just helps people to understand the difference in how we might need to function, and ration our time and efforts.

It’s infinitely fluid, and your energy, or your spoon allotment, most likely changes from day to day, but the crucial thing is to know and understand this.

Know yourself
Know your brain
Know your spoons

Try to start recognising and respecting the parts of life that you struggle with most, and see if it is possible to monitor your energy in these areas accordingly.

My partner and I both struggle with social spoons. We do love to see people, and we make an effort to do it when we can, for our own sake and our childrens, but we have to moderate this or we simply get overwhelmed.

If we have a visit from family one weekend, it is extremely unlikely that we will do anything social the next weekend, because we will need time to recover. If we go to a social event with our children on a Saturday, we are certainly not going to be booking another one in on Sunday unless there is absolutely no way around it.

I see people around me with their weekends completely filled up, moving from one event or one group of people to another, and I marvel at it.

At how they don’t arrive at Monday a mere grey shadow of their former selves.

But social gatherings, and all their accompanying stressors, don’t necessarily exhaust neurotypicals. And not everyone who is neurodivergent will struggle with the same thing.

A few years ago we didn’t understand how difficult we both found these occasions, and that led to a lot of further stress, misunderstanding, and sometimes anger at each other. We now understand that there are limitations to what we feel able to do, and that when we do socialise, we need to set boundaries and expectations regarding the time we will be at an event, what will be happening when, and if necessary, a watertight escape plan if one of us gets overwhelmed.

This realisation has made us kinder to ourselves and each other. We still get frustrated at times, we even have the audacity to feel left out when we aren’t included in things, but we are overall more accepting that our lives are best lived at a somewhat quieter, slower pace, than some people choose to.

So, we need to identify the spoons we are most deficient in, and plan ways to ration them wherever possible.

We also need to rest and recuperate wherever possible after situations that are particularly draining or spoon-use heavy.

This isn’t always possible physically, due to work, family, other obligations, and accomodations often need to be put in place both in workplaces and at home to make everyday situations less draining to us.

So first, to tackle the issue of pacing our energy use externally, we need to speak up, at work, and at home, about the things that are hardest for us, that we need some of the load taken from, that can be done differently, or at the very least get total understanding and support with if we need a break.

Employers have an obligation to put adaptations in where they are able to, to minimise the load on the individual with aspects of working life they may find harder, and by so doing, enable the individual to be a more successful and productive employee.

I am aware that neurodiversity in the workplace is an enormous subject however, and as such it will be the sole focus of another post.

Secondly, we need to conquer those massive three internal obstacles.

Unrealistic expectations
Guilt
Frustration/ our own ferocious drives

Unrealistic expectations is a killer feature with ADHD. Yes, in the moment, we do firmly believe that we can get three loads of laundry done, cook a weeks worth of meals, knock out an old fireplace and teach ourselves oil painting before we need to collect the kids from school.

Time blindness plays a major role here – we can genuinely find it almost impossible to gauge how large or small a project is, how long it will take, and most of all what is realistic, energy wise, for us to achieve in a day.

And here’s the thing, we don’t want to limit ourselves. We don’t want to be sensible. We want to have all the ideas and do all of the things. All of the time. And not being able to can feel crushing.

Slowing down, accepting less (hello perfectionism) can feel like we are literally duelling with our own brains, and i’m not going to pretend we can ever completely mitigate that, because it’s in our nature.

For most of us, we need to take the expected tasks that we are hoping to complete in a day:

– halve them.

– and then halve them at least once more to come anywhere close to what will actually end up being achievable.

The shorter we make those lists, the more successful we can feel when we manage to achieve more of the things on them. It also helps to break bigger tasks down into smaller points.

For instance instead of: – Do laundry

1) sort the washing into piles

2) put a load of washing in the machine

3) transfer washing to the drier

4) empty the drier

5) fold washing up

Breaking things down works because it recognises the effort that our brains are having to make for each stage of a task, unlike a neurotypical brain which may be doing many of these steps automatically.

It also helps to break these steps down to the smallest form possible on To-Do lists.

These days, the first item on my To-Do list, will usually be: Write To-Do List.

What I have done here is recognise the effort that is required to do this; to assemble my thoughts, to work my way through the mental chaos and the intruding and varied aspects of life enough to actually work out what tasks need to be done.

Shopping is never just shopping, its usually Write Shopping list, Go to shops to get shopping, and then Put Shopping Away.

Other steps can appear in this list sometimes, like Clear out fridge for instance, before putting shopping away. Very rarely do I have the energy to get the shopping in from the car and immediately start putting it away, because it’s such a draining and mentally overwhelming task. I would usually at a minimum have to have a sit down and a cup of tea and some complete quiet for twenty minutes.

Breaking lists down like this gives us a more realistic view of how many steps are actually required mentally for us to get tasks done.

It also means that it is easier for us to cross out a task as completed, which gives a small sense of accomplishment and a hit of dopamine, for each one, no matter how small.

We need RECOGNITION – of the effort that we put into each single task.

On some days, doing a load of laundry and emptying the dishwasher can be a massive achievement, and you need to be patting yourself on the back for every tiny thing that you accomplish that day, because you pushed yourself to do as much as you were capable of doing.

For all the things that we end up doing that we never intended to start doing with ADHD, one thing we are never doing, is not trying.

You have to recognise this.

It is in our nature to try our best all the time, partly because we constantly feel we have something to prove, or that we are trying to catch up, but there is no part of us that actually seeks to be lazy or immobile.

Paralysis happens due to overwhelm – See this post on ADHD overwhelm and paralysis, and on those days when we feel we have accomplished nothing, often, we have been trying harder than ever, not less.

On a bad day, you pat yourself on the back for every tiny thing you manage. Getting out of bed. Eating something. Getting to the end of the day.

These days often happen because we have ourselves trapped in a burnout spiral, we have pushed too hard, and now the brain and body says no.

Sometimes the 3 wheeler needs a refuel. And its only got 2 spoons in the engine. STOP! yes, I know, too many analogies mixed up together, messy messy like my brain.

But building more rest and pacing into everyday, learning to accept less, can also limit those days of total burnout.

Guilt. One of our biggest nemesises? pretty sure that’s not a word. Nemesi? Yes I like that. Guilt will come up a lot, with good reason, as there are few areas of our lives in which it doesn’t play a major role, but in this context, it has a tendency to stop you from recognising your need to rest. Your need to preserve… or maybe even regrow? (we can hope) spoons.

When that feeling of exhaustion hits, no matter how much or how little you feel you may have done, if you have the opportunity, listen to it.

If a two hour or longer rest means that you can function properly for several hours later in the day, maybe achieve a few tasks, or maybe just remain in good humour for your family, isn’t it better than the alternative?

Which is a day of half finished projects which you were too exhausted to have started in the first place, the accompanying chaos and frustration, and the strung out mess of a human being that you will end up being by evening.

I have no doubt that without that hour of complete rest that I allowed myself this morning, this 3000 word blog post would not have been written.

We need to accomodate our brains

Mini, or maxi rests, resets, naps, zone out time throughout the day (and what works for this will vary enormously from individual to individual), can be repairing and restorative to our brains.

You wouldn’t expect a person with a broken leg to run 10k. But we expect our differently wired brains to achieve the same things in a day that a neurotypical might.

Aint gonna happen.

Actually….that’s not quite right. There is an exception to this. Which brings be onto:

Frustration/ Our own drives… and of course…hyperfocus.

Now, yes, we get tired much more easily, a lot of things require a great deal more effort, we have a tendency to burnout, and this is why we need to pace ourselves. There also exists however, a state that my partner kindly describes as “being on one“

He refers to the worrying and almost preternatural energy that sometimes seems to take me over from within, driving me forwards at force with all manner of incredible projects, often being focused on for many hours, with incredible dedication and indeed with supreme efficiency.

Because the thing is, we can actually do that.

We just can’t control when it happens.

On one of these occasions, I actually can have done three loads of laundry, cooked a weeks worth of meals, knocked out an old fireplace and learned oil painting.

So why his concern? Typically, because the episodes could be thought of not so much as the storm before the calm, but the tidal wave before the doldrums. (Doldrums – lovely word – apparently a region near the equator characterized by calm, windless weather and a state of stagnation or low spirits)

ADHD energy is non-linear.

Actually, everything about ADHD is non-linear.

But we tend to have huge peaks and troughs of energy over which we have very little control. His warning to steady myself will fall on deaf ears, because I am physically unable to stop or control these bursts of energy, and if I stop or try to hold myself back it causes a sensation of actual physical discomfort bordering on pain.

He knows that I will probably spend a few days burnt out, being good for not very much afterwards, and invariably I will.

And my feelings when such an energy burst is happening? well obviously for the most part I just assume that this is the new way i’m feeling and that everything from now on will be great, because I have ADHD and my brain does that, but even when I realise I am “on one” I don’t want to stop if I could.

Why should I ?

We never know when our energy and focus will arrive, what form it will take, exactly how it will manifest, but when motivation and task initiation is so problematic for big chunks of time, when an energy storm arrives, I believe we have sure as hell earned the right to ride it.

With joy and abandon.

So whilst pacing wherever possible is important for everyday life in a neurodivergent brain, I also believe that we have to learn to love and live with our energy storms. To accept and harness their power, and to submit to the days of recovery with as much grace as we can muster.

Many of us with ADHD suffer with perfectionism, and a desire to fix a problem with a strict or neat pattern or solution that can be applied ad infinitum. The internal chaos of ADHD often carries with it a strong desire to impose external order or patterns of behaviour.

Often, we can hyperfocus on such new regimes with intensity, and rigidly stick to them for weeks, only to explode off course destructively, or onto an entirely new course later on, which is why strict formulas don’t tend to work for us.

I would love to have an answer to controlling my energy better, but in many ways I think the closest we can come is acceptance of how much of this lies beyond our control.

We are volatile, fluid, sensitive creatures, with needs that change from one day, often one hour to the next. Respecting that we cannot control this entirely, but that we have to be kind to ourselves about it and not apologise for it, is crucial.

And building in those breaks, rests, naps, mini sensory holidays, recognising those exhausted brain feelings as they start to creep up and actually listening to them, will allow us to ride those uncertain daily energy waves with, if not exactly expertise, maybe a slighter firmer grip on the board.

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What are your biggest energy drains? Do you have any tools or strategies for preventing burnout? How do you reset and refuel your brain? let me know in the comments below.