When Rest Becomes a Full-Time Job

If there’s one thing I’ve learned about FND, it’s this:

It isn’t just about symptoms. It’s about energy.

Managing my FND is basically managing my battery levels - and trying not to drain them before the day has even started.

There are so many factors to my FND, and so many things that can trigger symptoms… but energy is the biggest one.

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Sleep (the biggest one of all)

Let’s start with sleep.

Sleep is when your body regenerates. If I’ve had a disturbed night, not enough sleep, woken too early, or missed a snooze during the day... my energy levels are instantly affected.

And if my energy drops, symptoms follow.

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Hygiene takes energy (yes, even that)

Then there’s hygiene.

A shower takes up energy.

A bath takes up less because you’re lying down… but getting out of the bath takes just as much energy as having a shower in the first place.

So I weigh it up each day. If I’ve got no reason to go out, I don’t always shower. I’m growing my hair so I can tie it back on the days I don’t.

And yes, I know some people might judge that.

But they’re not the ones living in this body.

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The reality of daily life

I don’t work - I can’t do a physical job, as you probably understand by now.

But I do what I can at home to help run the household.

I have a cleaner. My husband does the cooking and washing. My son lives away at university and my daughter is college age. And I try to do as many jobs as possible while seated.

It might take longer, but it uses less energy.

So I fold the clean washing sitting down. I help prepare food at the kitchen table. We have to get creative and adapt how to do things around here.

I rely on others more than I ever expected to, and I’ll be honest… it’s hard.

I’ve always been independent. I even had an at-home cake business for a while. So asking for help fills me with guilt, and it’s something I battle with daily.

As I’m typing this, I’m lying in bed resting my body. Part of me still worries people would think I’m lazy… but I also know I need it.

A friend and I have talked about 2026 being the year of not giving a crap what other people think.

Because the truth is:

- Other people don’t live my life.

- And the people who care about me don’t judge me.

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Non-negotiables and planning life around them

There are appointments, errands, and life admin to do - and I plan around those.

The big weekly food shop is down to my hubby. I sometimes tag along on my mobility scooter if I’m up to it.

But my non-negotiable outings each week are:

• picking my daughter up from college twice a week (6 miles away)

• choir on a Tuesday night (30 minutes away)

I don’t get out of the car for college pickup, but I still have to be safe enough to drive. That means:

no recent seizures,

no dizziness,

awake enough,

steady enough.

Everything else has to fit around that.

I also go to my friend’s house on a Friday and sit chatting while she cleans. A few hours somewhere different, with company, makes such a difference. Otherwise, friends come to me.

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“Gosh this sounds gloomy…”

I AM generally happy (promise).

Whatsapp is honestly my lifeline. I keep in touch through messages, voice notes, video calls… whatever works.

But my life now is full of compromise. Way more than I ever wanted it to be.

Because after all that careful planning, weekends come around — and there’s the question of whether I can actually do something fun.

And fun looks different now.

- Is where we’re going mobility scooter accessible?

- Will my battery last?

- Will I have enough energy to enjoy it?

I actually saved up for a second scooter battery. It cost £400 and took ages to save up, but now it’s here, it’s been an absolute godsend.

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The guilt of cancelling

I hate pulling out of plans.

Being autistic, I plan the heck out of everything, and I hate last-minute changes.

I know people understand why I cancel, but I still get that guilty voice in my head:

“If I’d managed my energy better this week…”

But life doesn’t work like that.

Sometimes you do everything right… and your body still has other plans.

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When I ignore my energy levels…

Feeling “well” for me means I can get out of bed, walk in a straight line, and have no dizziness.

That can last five minutes… or five hours.

I can get up, go to the bathroom, think hmm I’m doing ok today, then walk downstairs and only just make it to the bottom without falling.

Every time I stand up - whether from bed or from sitting - I do it with positivity. I assume I’m fine, and then I wait to find out if my body agrees.

Sometimes I’ll be fine making a drink… and then halfway through I start wobbling. But if I’m only seconds away from sitting back down again, I’ll push through.

But pushing too far is where things get messy.

If I feel well and decide to organise a cupboard (which I LOVE doing), I often bite off more than I can chew and have to stop mid-way.

And I’ve had to learn to accept the mess.

If I push through, I know it will lead to more symptoms… and ultimately a seizure.

The longest I’ve had on-and-off seizures is a week (and then ended up in A&E).

The worse the seizure, the longer it takes to recover. A few hours of seizures can mean days of recovery afterwards.

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My symptoms in stages

My mild symptoms are things like:

• walking like I’m drunk

• dizziness

If I keep pushing, next comes:

• a nodding or shaking head

• weakness in my legs

If I push again, it can lead to:

• tight jaw / back / fists (or all of them)

• full body spasms

• what looks like a seizure

I’m conscious throughout.

I’ve had scans, and as much as it looks like epilepsy, it isn’t. It can’t be treated with epilepsy medication, which is why it’s classed as a Non-Epileptic Attack (NEA).

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Sometimes you have no choice but to push through

Of course, it’s not always stubbornness.

Sometimes you have no choice.

My husband was in hospital last year for five days. I visited twice a day, every day. I knew I was tired. I knew I’d “pay for it”… but I did it anyway.

And sure enough, the day after he came home, I crashed.

We recovered together.

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Am I “lucky”?

I guess I am lucky in some ways.

My children are grown. They can do things for themselves, and they can help me too. I don’t have two school runs every day. I don’t have washing piling up constantly.

I can take life slower.

And I’m grateful for that.

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Is this linked to being neurodivergent?

One question I keep coming back to is…

Is any of this linked to being neurodivergent?

I know my brain works differently. I know it takes me longer to process things. I know I carry stress differently.

So I do wonder:

Is my brain struggling to process trauma and stress because it processes everything slower?

And could that be linked to my FND?

I wonder what percentage of people with FND are neurodivergent.

The Lightning Process reminds me not to get stuck in the “why” and instead focus on strengthening positive pathways.

But we’re naturally inquisitive, aren’t we?

How do I combat symptoms and gain energy?

My first place to rest is my chair and footstool in the lounge. Feet up makes a HUGE difference.

I was told that rest isn’t full rest unless you’re horizontal… so yes, sometimes that means bed.

I’ve also realised how important snoozes are.

Four days a week I get up early to make sure my daughter gets out in time for college… and then I go back to bed for an hour or two.

It makes such a difference.

Other things that help:

• planning and spreading out anything energy-draining

• doing things that make me happy (candles, singing, comfort films)

• distraction (it’s honestly one of the best symptom slowers for me)

• focusing on breathing

• meditation

• calming music

I’ve learned that my brain needs peace, not pressure.

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Mobility aids (freedom, not failure)

Before The Lightning Process, I used mobility aids constantly.

For months I tried not to use them at all… but I ended up going out less and less.

So now I use them when I’m out of the house.

They help me conserve energy. They help me stay out longer. They give me freedom.

I can’t walk for hours… but I can scoot for hours.

I’ve had to reframe it:

Mobility aids aren’t a sign I’m giving up.

They’re a tool that helps me keep my independence.

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Stress = symptoms

Keeping stress low is important.

And if stress can’t be avoided?

Then I need to do more rest, more calm, more breathing, more slowing down.

More kindness to myself.

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Looking forward matters

It’s also important to have something to look forward to.

I keep adding things to my diary - whether it’s a date night, a brew with a friend, or something bigger like a holiday.

If it’s in the diary, it feels more real… and it’s more likely to happen.

And depending on energy levels, date night might mean eating out…

or it might mean a takeaway and a film.

Both count.

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If you’re reading this and figuring out your own FND symptoms, I’d love to know how you get on.

What are your triggers?

What helps you recover?

What helps you balance your energy?

I’d genuinely love to hear.

JuJu x