What the **** is a spoon?!

Myalgic Encephalitis

Since becoming unwell I’ve realised I have to make decisions about how I spend my time, if I want to go to a party in the evening I need to spend all day in bed resting & eating well. If I wake up in the night in pain, I need to cancel a morning appointment so I can make the afternoon one.

Now, I am going to talk about spoons… no we aren’t going to eat with them, please bear with me!

My Grandpa introduced me to ‘the spoon theory’ a few years back, he loves to research & is fab at supporting me with my condition. I received an email from him which read, something along the lines of , ‘ use the spoon theory to structure your days’ Attached was a link…

Some days my spoons feel like forks!!!

Now when I received this email, I thought he’d gone a little mad! The older generation of my family are often sending me links to obscure videos and spam websites in my emails, usually that I’d be worried to click on as it’s likely they’ve forwarded it on from their other elderly friends *face palm* & I’m usually worried I’m going to be hacked and a victim of fraud when I receive emails like this… The elderly aren’t particularly tech savvy! My symptoms weren’t great that day and I clicked on the link in his email- here I learnt about ‘The spoon theory!’ At the time it was very new to me, but now it’s great & I see it everywhere- perhaps my Grandpa was ahead of ‘the youngsters’ for once hey!

The spoon theory is a great system to live your life by.

Why is it called the spoon theory, that’s a bit random!?

The spoon theory was originally created by Christine Miserandino in 2003 as she struggled to explain how life with an autoimmune condition makes her feel on a daily basis. She was sat at dinner with a friend who asked how she was and used spoons from the tables near by to explain her energy levels, she then decided this worked great & wrote about it. Within the theory she describes a persons units of energy to be represented by a spoon- hence ‘The Spoon Theory.’

The average person would be entitled to 12 spoons a day. The amount of spoons used per activity in their day depends on the person, their health & previous commitments. If you are an able bodied person you should theoretically have roughly the same amount of energy each day.

Spoons are sometimes replaced with the idea of a metaphorical battery.

For people with chronic illness or a condition that causes chronic fatigue, some activities may take more ‘spoons’ than it would for an able bodied person. Healthy people tend to have ‘stronger’ spoons or are more consistent in having 12 spoons a day to live with, whereas chronically ill people may have as little as half the amount of spoons!

If you use up all your energy in the morning you will have none left for the afternoon/ evening. Spoons are therefore a great visual representation to let you know when you are becoming low on energy & that it’s time to take a break. An hour nap could perhaps re-charge one spoon. If you power through you’ll end up using extra spoons and have to borrow spoons, which will leave you with less for tomorrow.

In the ideal ‘super duper organised’ persons’ life, you might have a book in which you track your spoons (drawing them visually and dedicating your daily tasks to each). In real life- This is less likely, I’d rather an extra half hour in bed then have to waste excess energy writing my daily spoons out! (Although I’m sure this could be quite therapeutic for someone who likes to live according to a timetable and structure). I tend to have a mental approach to my spoons. I can feel certain symptoms coming on & I know that I need to calm down- (it’s rare I do take a step back- I tend to live my life at 110% or 10% – I am yet to master the art of pacing!) That being said I know in my head according to my spoon count, what I should be doing throughout the day.

This is a waffley one sorry! But I do hope it makes sense:)

So…

How do I count my spoons?

Some activities cost more spoons than others.

For a person with a chronic illness they need to make carefully thought out decisions about which activities they can participate in, if they don’t do this, it is likely they will experience a flare up (exacerbation of symptoms the following day.) For someone with ME/CFS (Myalgic Encephalitis) the exhaustion caused by ‘using too many spoons’ is reference to as ‘Post Extertional Malaise’. If you do not pace yourself (and count your spoons), your body has a meltdown and there is a knock on effect from over doing it.

I am a person who wants to do lots of things, trapped in the body of someone who is sick & needs to sleep a lot.

I love this! It’s very accurate.

For many chronically ill people, our illnesses stop us from doing all the things we want to do.

Understanding others’ spoons:

We all have that flaky friend!!!Chronically ill people really really don’t want to be ‘that’ person- they don’t want to appear inconsistent or unreliable, a flake but their energy levels and symptoms can fluctuate. Making people aware of the spoon theory makes it easier not to have to explain yourself. A healthy person rarely needs to plan how to use their spoons, (although it is a great idea for them to be aware of their spoons), they don’t have to decide between a shower and a doctors appointment or a party and going shopping. They’ll likely be tired after a busy day but not fatigued from small activities.

Myalgic Encephalitis or Chronic Fatigue Syndrome has different severities, a person with more severe chronic fatigue syndrome may struggle to shower, get dressed, cook. Each activity an able bodied person may take for granted can be a huge challenge. Many people with other health conditions experience intense chronic fatigue too. Some people who follow the spoon theory refer to themselves as ‘spoonies’ or ‘warriors’ so you may have seen it referred to in that sense. For me this is a bit cringe and I prefer using it mentally, but if it helps you, go for it!

How do I manage my spoons?

For me – changing my bed sheets wipes me out- I know if I’ve got to change my bedsheets, there is absolutely no way I can go out the house too. If I have no choice but to change my bedsheets, I’ll cancel plans for later in the day or invite people to my house where possible. I feel a lot more comfortable in my house as most my friends know of my condition and we can have a nap together or do something low energy, I’ll lay in bed whilst five or six other people chat in my room- it’s a good way to still feel able to be included in plans but not waste spoons getting buses, walking, makeup, getting dressed, going to public places etcetc! On the other hand I may ask for help to change my bed sheets to save spoons, if I can get my carer to change my bed sheets or pay a friend to do so, then it’s likely I’ll make it to dinner or stay awake through that film… maybe if we’re lucky!

Similarly- washing my hair is a Bloomin’ faff! I hate it. No you do not love my hair, no you do not want curly hair ! Hahaha… If I wash it I usually need someone else to brush it or i’ll need a nap after, brushing my hair alone can take me up to an hour. Some days, the act of doing one activity steals spoons from other activities. On a hair wash day it’s unlikely you’ll catch me doing much else unless you can help me with washing and brushing my hair before.

Above is a great poster illustrating the spoon theory.

Now if each of these day you say activities only took one spoon, that’s 16 SPOONS GONE. You’ve already borrowed 3 from tomorrow!! What are you going to do as each task takes up to 4 spoons!!! That’s too much maths for me, but you get the stress.

1. wake up
2. brush your teeth (1 spoon- sometimes I get back into bed to do this;) )
3. Shower or Bath (lots of my spoons get taken here! A lay down on my bed after usually helps me recharge)
4. get dressed
5. eat breakfast
6. go to the doctors (for me this could take 4 or 5 spoons)
7. come home (driving makes me sleepy and the bus so I’d definitely give this a couple more spoons)
8. make and eat dinner (most the time cooking makes me so exhausted that I end up sleeping whilst my dinners still in the oven!)
9. change into your pyjamas (let’s be real, I usually fall asleep in my clothes!)

You get the picture, these are just essential day to day tasks, we have nine activities and right away a lot more than 12 spoons have been used. Some of these tasks like brushing your teeth may only use up one spoon, while going to the doctors has a number of stages and could use up six spoons. This only leaves you with five spoons for everything else… and there’s no way you can make five spoons stretch without exhaustion. So what are your options? You can opt to ‘borrow’ spoons from the next day’s allowance but that means you start the next day short, you can’t be short on spoons everyday because you’ll run out, imagine trying to do your essential tasks with even less spoons. It’s easy to get trapped in a cycle of overdoing it and exhausting yourself due to not managing your energy levels. Therefore if you use 20 spoons in a day you’ll need to make up for those extra spoons with rest the next day.


Sure, able bodied people might have the odd day where they don’t feel like cooking or cleaning, they may have hurt their back or over done it. This is temporary. Having energy and good health should be classed as a luxury, share your spoons, if you know you’ll be okay with one less spoon- offer to carry someone’s bag, grab bits from the shops, help with cleaning, cook their dinner. An activity which takes one spoon for you may take three for someone who is struggling.

Right… I’m going to stop rambling on about spoons, because seriously, there’s only so much you can say- they’re a metal utensil used for soups and yoghurt! Maybe we are all going mad!

Take care & count your spoons

Lauren xx

My mumma got me this engraved spoon as a reminder, it’s pretty with little flowers on too!

ME- the real problem

Myalgic Encephalitis

Christmas 2018 was a healthy one

For me Tourettes isn’t the problem. Tourettes Syndrome makes the problem a lot more visible to others.

I’ve struggled with ME/CFS- Myalgic Encephalitis or Chronic Fatigue Syndrome for a few years now. It’s an illness full of surprises.

What is ME?

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. (Fatigue) NHS.

Who gets ME?

CFS/ME can affect anyone, including children. It’s more common in women, and tends to develop between your mid-20s and mid-40s.

In simpler terms- imagine you’ve been doing the dreaded bleep test alone or 40,000 steps up hill- you’ve just finished and all you want to do is get into bed… instead you have to do the same thing again- no one can see that you’ve just done all of this, so you have to power through and pretend your fine & ready to do it again. Really? Yes.

Having ME makes you very fatigued. Constant exhaustion is something I have to deal with. I look rude for yawning. I look lazy for not being able to join in with others.

I spend much of my life responding to ‘I’m really tired too’ ‘how can you be tired you just slept 26 hours’ or ‘if you sleep during the day you wont sleep at night’ – trust me I will.

I don’t complain. There’s not much point in complaining. My mum and my sister are there to receive all of my frantic I hate life messages in our group chat (love you both) they are the two to listen to my complaints, other than that- I power through.

Spoon Theory:

I recently discovered the spoon theory and now it seems to be following me everywhere! I definitely need to be following it!

The spoon theory discusses the fact that we have 12 spoons a day. The average fit person has one task for each spoon. But for a sick person – daily tasks such as taking a shower often takes 3 spoons for me.

A friend of mine who I met being sick often asks me ‘do you have enough spoons to deal with my emotions as well as yours today?’ I love this. She understands. She knows that dealing with other people’s problems as well as your own can be difficult particularly when you’re sick so before bombarding me she is considerate.

Of course I’m always happy to listen to my friends if they are struggling. I’m learning to understand things are all relative and other peoples problems that may seem tiny to me could be a massive deal to others as life is all relative. I’m always interested to hear about other peoples lives but sometimes the tiredness takes over and I come across as though I’m not listening so perhaps arranging another time to talk is what’s best for us both.

Slurring my words, fainting, answering phone calls mid sleep and having no recollection of it is much more than just tiredness.

Empathy:

I am conscious of losing friends due to no longer being the one who is up for everything the first one drunk on a night out. I love my friends and I have come to discover who my true friends are – the ones who come over and do my washing for me when I’m sick, who organise my medication & simply just make me a cuppa! From a young age I was exposed to illness- I have/had many family members who have been so incredibly poorly at times that my empathy is definitely there. I’ve cared for family members and seen them at their worst- it’s in my second nature to want to help people, protect their mental health and make them better so being poorly myself and less able to do these things is hard.

Having had someone in your life who is very sick makes you a different kind of person. I still feel immense guilt when people help me with the smallest tasks, even if they’ve offered and I haven’t had to ask.

Fatigue is not tiredness:

Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone — it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night’s sleep solves the problem.

GLAMOROUS!

Being so tired I physically poop myself as I cannot make it to the toilet (I can’t believe I’m saying this online!) now that is fatigue. Waking up after 28 hours of being asleep or a 15 hour ‘nap’ and not being able to see as my eyes are so dry- now that is fatigue.

Asking for help:

Carrying things, chopping things, stretching- everyday I have struggles which make me laugh as I’m unable to do what I should be able to as a 19 year old- sadly as people can’t see my illness sometimes I wish I was permanently in a wheelchair so people could see just how sick I am whilst at other times I laugh at just how determined I am to do things by myself. Use it or lose it as my mum says.

I don’t like asking for help but there are definitely things I need to accept I need help with. Mobility aids. I’ll definitely be doing a post on mobility aids in the near distant future.

Since my diagnosis of Tourettes Syndrome (which is incidentally still being researched as to whether there is something else the doctors are missing) people are starting to show concern- people worry as to why my tics are so prevalent, when in reality, the tics really are the least of my problems hahaha! My pain, fatigue, brain fog- now they are more of a problem. The fact I tic which causes migraines leading to me being sick for hours- yes that is a problem but the migraine is simply a symptom of the ME and the tics which cause me to lock my jaw move my arms and flare up fibromyalgia.

The only part of my illness that makes me sad is the fact that I am only 19- people would assume I‘d be out at raves till 5am when reality I go to bed at 5pm. I’ve learnt to accept this is my life for now so there is most definitely no point in being sad. I can still have a drink every now and then, it just results in a huge flare up and around 4 days. If I have a few drinks, although it usually is super fun, it takes about 40 spoons for that weekend and therefore recovery is needed- big time. other 19 year olds would’ve been able to spend all day out and about and then go clubbing, for me I can do 1/2 of one of those tasks at the detriment of myself the next few days. Yes, it is worth it for the memories but unfortunately having fun cannot be a regular occurrence.

I bit my tounge – it was a tic. It hurt. Layers of makeup still can’t hide the fatigue in my eyes.