Fatigue and the Spoons Theory

General
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Just thought this metaphor could do with an airing as there have been so many discussions about fatigue recently, @Janerider , @RubyRooX , @sole to name but a few. This might you better understand how to manage your life after stroke to reduce or avoid fatigue.

The Spoons Theory
It’s actually a way of explaining how people living with chronic illnesses which cause fatigue, such as neurological conditions and mental illnesses, manage their energy levels.

How does spoon theory work

Let’s say you have 12 spoons, which is the amount Christine used to illustrate the theory. In an average day, you might want to:

  1. Wake up

  2. Brush your teeth

  3. Wash your face

  4. Get dressed

  5. Eat breakfast

  6. Go to the doctors

  7. Come home

  8. Make and eat dinner

  9. Change into your pyjamas

Right away, this comes to 9 activities. Some of these tasks, like brushing your teeth, may only use up 1 spoon, while going to the doctors has a number of stages and could use up 6 spoons.

This only leaves you with 5 spoons for everything else… and there’s no way you can make 5 spoons stretch that far.

What happens when you run out of spoons?

So what are your options if you need to get everything done with only a small amount of spoons?

You can opt to ‘borrow’ spoons from the next day’s allowance. However, this means you start the next day in deficit. Imagine trying to get all those tasks done with an even smaller number of spoons!

It’s easy to get trapped in a cycle of overdoing it and exhausting yourself, due to not managing your spoons well enough.

The #Spoonies hashtag is bringing people together

#Spoonies is a growing hashtag used across social media to unite and identify people who struggle with energy management.

It’s being used to spread awareness that not everyone can take their energy reserves for granted and to encourage people to support one another.

So the next time a friend cancels plans at short notice, or seems lethargic or irritable – check in with them like Christine Miserandino’s friend did. You never know, they might be a #Spoonie too.

Lorraine

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“Joining the Forum After Vertebral Artery Dissection and Stroke
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Thanks for sharing this Lorraine. This is a very good way of describing fatigue and fatigue management. I am sure it will help many on here. It’s a shame that drs don’t explain this to those who suffer fatigue. Or at least that is my experience.

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Thanks for sharing @EmeraldEyes…That makes it so easy to understand. I must have used up a whole week of spoons last weekend when I felt good and have now struggled each day on just a few spoons, obviously buying into the next day. It explains why the ‘bust’ takes so long to clear and why rest is so important.

I wonder if the cutlery drawer expands with time? Hope so :crossed_fingers: xx

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I am definitely a Spoonie!!! This has cheered me so much…you are so wise Lorraine…and I know about myself I will deliberately use up spoons on certain days, say if I want to attempt some fairisle knitting or go on a train trip, or around the shops ( I also have to walk the dogs every day that’s a given) and then curse myself the next day when I feel rough…living alone with no one checking on me I have to be very careful …but it’s getting to be a trade off now I know what’s going on ( there is another forum topic called Peculiar where Rups talks about how all this feels) ….i wouldn’t have known any of this without this forum, I am so thankful xx

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After stroke we are left with dysfunctional mitochondria. The mitochondria don’t just suffer temporary damage — many are permanently altered or destroyed.

What happens to mitochondria during a stroke?

A stroke (or a “brain attack”) happens when blood flow is cut off to part of your brain. Imagine you unplug a battery pack from the charger. For a few minutes, it runs on what’s left inside. But if you leave it unplugged too long, the battery pack breaks permanently .

  • Before stroke: Healthy mitochondria (full batteries).
  • During stroke: Oxygen runs out. The batteries try to make energy without air, but they create toxic waste and overheat.
  • After stroke (Reperfusion): Even when the blood (charger) comes back, the batteries are fried. They can’t hold a charge anymore.

Result: You are left with dysfunctional mitochondria (broken battery packs).

Stroke Fatigue (The “Broken Battery” fatigue)

  • Example: You try to do one small thing (like folding laundry or reading a page of a book). Your brain cells try to pull energy from the mitochondria, but the batteries are cracked .
  • They leak energy. They overheat. They don’t recharge overnight.
  • You don’t feel “tired like you need sleep.” You feel poisoned , heavy, and blank. Your brain shuts down.
  • Why? The broken mitochondria are leaking toxic waste (free radicals) into your cells while trying to work.

Mitochondria are the batteries in your cells. A stroke fries those batteries into “lemon” batteries that leak energy. That is why you feel exhausted after doing almost nothing—your brain is running on dead batteries.

What helps (according to science)?

Since you can’t buy new batteries easily, you have to manage the ones you have:

  1. Pacing (The Spoon Theory): Do 5 minutes of work, then 15 minutes of rest. Never drain the battery completely.
  2. Exercise (Gentle walking): Oddly, moving a little forces the brain to build new mitochondria around the broken ones. (Too much exercise will crash you. Low and slow.)
  3. Creatine: A supplement that acts like a “battery extender.” It gives the cells a tiny bit of extra juice to help the broken mitochondria. (Ask your doctor first).
  4. Avoid “Crash and Burn”: If you feel a wave of heavy exhaustion coming, stop immediately . If you push through, you will be bedbound for 2 days. That is the mitochondria forcing a shutdown
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I also like A letter from your Brain ALetterFromYourBrain.pdf as an explanation of brain injury and

A gorilla in your House This Is My Blog: The Gorilla In Your House as an explanation of the way disability can feel.

I would recommend showing both to family and friends.

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I do recall the what the doc at hospital told me, but it was none of this side of stroke. None of the ward staff talked either. I sometimes wonder if they’re even aware of post stroke symptoms.

I remember getting a load of leaflets at discharge.

I also remember a Stroke Association member coming to talk to me at my home. They gave me a load of leaflets too. Same too with the OT and physio with loads of leaflets.

The only trouble with it all was I couldn’t read or write! They’d all asked me if I had any questions at the end if I had any questions and I could only look at them blankly because I couldn’t speak!

When OT organised speach therapy, that turned out to be via phone so that didn’t work out all​:face_with_diagonal_mouth:

I had millions of questions, but I don’t recall much was answered in those leaflets. I’ll never know now as I threw them all away a couple a year two later once I became a little more switched on.

So basically I missed that window of opportunity because I’d a stroke, so inconvenient :confounded_face::zany_face: And of course my family are not mind readers so they couldn’t think of anything to ask beyond to usual thing like timeliness, will I get better, what caused it, etc. Never heard fatigue mentioned by anyone.

I found most of my answers on the internet. It took a few years of time and perseverance. It was a good rehab exercise though as it meant me relearning how to read and type and construct legible sentences. OK, I’m still not perfect but hey-ho, I did it on my own anyway, and probably learnt more than some docs know about stroke. And it’s all thanks to platforms like this, Internet and family​:blush:

Lorraine

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That all sounds about right. I was only given 1 leaflet (on driving) but noone checked O could read it. You were spoilt with all those leaflets :face_with_hand_over_mouth: I could read the words but my concentration levels were so bad I could only read a couple of words then I needed a nap. they must have known you had aphasia so I can only assume they thought your family would read & pass on what you needed to know. :grimacing: i think your treatment was a bit lacking. Well a lot lacking.

I know everyone’s strokes are different but if someone had said to me about fatigue ig would have helped me understand what was going on ad I had fatigue straight away…i just didn’t know it.

Like you I found most of my answers on hete & the internet.

I was fortunate to have a friend who was an OT specialising in brain injury who also explained things to me.

I suspect not much has changed now.

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To be fair to the NHS we were going through that dreadful pandemic at the time. And the way I saw it, I doubt they could do anything for me that I wasn’t doing myself. It’s not as though they could see inside my mind to read and understand me.

What I do recall of all those leaflets is that they were of no use to me. So you probably weren’t missing out on much.

Lorraine

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I think you were a bit in front of me with your stroke. When I was in it was nearing the end of the covid stuff but there were still many restrictions in place. They NHS had it tough & have never really recovered from it. I wasn’t able to have any visitors and they had these awful plastic curtains around each bed so talking to anyone on the ward was nigh on impossible…although the one time I tried it I made myself very poorly and unpopular with the staff as they had to call a dr to me. I was just feeling very lonely. The plastic curtains made it feel like I was in a goldfish bowl :rofl: and because i could see lots of flashing lines in my vision the crumpled curtains made it worse​:grimacing: but at least I was able to communicate a bit. I have always been grateful for that.

I ended up with tonnes of leaflets in the end from my OT friend and the Stroke Association Support Coordinator that visited me. I probably still have them tucked away. I did get some use out of them but this forum has been the biggest help to me throughout my journey.

At least we survived to tell the tale & some of the things that have happened have given me a good laugh too.

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Thanks @EmeraldEyes I love myself a good spoon theory! I’ve a chronic pain condition as well so I know spoonies in abundance.

I also found a fun alternative for those who are fans of magic and Dungeons and Dragons - The spell slot theory. You have a set number of spells of different levels, level 1 might get you out of bed, where a level 3 spell might be having a shower and getting yourself dressed.

Anything that acts as a reminder to help you pace yourself is so useful. And regular self-checks throughout the day…

  • Have I eaten?
  • Am I thirsty?
  • Have a stepped out the house? (Even if it’s just your doorstep for a breath of air)

Thank you for sharing your stories as well - I can’t imagine what it must have been like to experience what you did during the covid times. The internet is an amazing thing and, often, it gives us something we sorely need in tricky times - community.

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Loving the spell theory. A different take on pacing :grinning_face:

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Thankyou @pando , the best explanation/ description of fatigue after stroke I have ever read. Thank you . :+1:t3:

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You’re welcome. Knowing what we’re up against empowers us to do our best. Good luck, Sir

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This has explained it very well. I had a Tia 9 months ago and have been extremely lucky. The worst part is the fatigue. I am a very impatient person and couldn’t understand why it’s taking so long to resolve . I became very anxious, completely fed up and at the same time feel ashamed because it could have been a lot worse. My lovely grandson now comes and does my heavy housework for me. Now I will adopt the spoons and become a 74 year spoonie and hope my brain reboots in time thanks x

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Hi @Barb1 and welcome to the club no one would ever wish to join. I’m ten years younger than you and mine too was a mini stroke. Fatigue is common and you have to learn to pace yourself, reduce the amount you would the day and plan ahead for any major events/excursions. So things like taking frequent breaks to rest the brain, naps or mini breaks, and don’t expect to do much for a day or two after those majors.
Even a few minutes to sit…or stand…with your eyes closed helps. Because when your eyes are closed you are reducing the amount of information your brain is having to take in and process. Hence what I meant about mini breaks.

The fatigue are reduce over time, it’s a combination of how much you recover and good management of your time.

I hope you find the community useful, there are a lot of answers here to the many questions we have all had about strokes. The people here are all very friendly and supportive with first hand knowledge of their strokes.

Lorraine

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Hello and welcome to the community @Barb1 .

I am sure you’ll have experiences you can share with us and I look forward to hearing more from you :slight_smile:

Namaste|
:pray:

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Hi & welcome to the community @Barb1. Hopefully using the spoon theory will help with managing uour fatigue. It is definitely something that I use as much as possible. I don’t always get it right though. It takes practice but you should fjns it helps.

Well done your grandson on helping out. Don’t be afraid to take help…it’s difficult when you’ve always been independent but we all need help from time to time.

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Thanks for your reply. Will try very hard to slow down so to reserve energy.

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