Our Spoons

Hey! Hey you! Do you feel chronic pain? Are you knackered every single day with barely enough energy to lift a fork and guzzle some sustinance? Do you wake up feeling like you’ve been smacked in the face?

Seriously though…are you tired? Are you in constant pain?

If you can relate to this then you might be a Spoonie, like many millions of others around the world. Including me!

What does ‘Spoonie’ mean?

The term ‘Spoonie’ came from the blog of a Chronic Pain expert (and Lupus patient), Christine Miserandino. My understanding is that she was trying to explain (in simple terms) what it’s like to live with chronic illness to a friend. She used spoons as a reference to show that gradually, with every task completed during the day, a spoon is removed from the persons daily spoon inventory. With every disappearing spoon the pain and exhaustion becomes bigger, until you are out of spoons and essentially out of energy. If you’d like to read more about the theory then you can visit her website here, where there is a lot more information on the term (and probably a far better description too!).

Essentially a Spoonie has very few units of energy a day, and they have to be carefully rationed. This poster (borrowed from me-pedia.org) explains ‘Spoon Theory’ in a visual way with more detail on the ratio of spoons lost to the type of job or exercise completed. In practice I think this is a fluid idea where one person is able to manage some tasks easier than the next, and vice versa.

The number of spoons you might have available and that you use is fluid too. Someone living with CFS (Chronic Fatigue Syndrome) may only have 4 spoons available to them a day. According to the poster that would mean they have enough to get up, get dressed and watch tv. Whereas a relaxed day for someone who ISN’T living with chronic pain or fatigue could start with 19 spoons to play with. Using the same poster as a guide, this person has the capacity to complete many more tasks and the freedom not to have to think too hard about what they are capable of as the day passes by.

That’s a very basic overview, but you get the idea.

Who can be a Spoonie?

Honestly, anyone. It can happen out of the blue when you’re young or old, it might be triggered by stress or an accident, or you may have been living as a Spoonie because of a life-long condition. You may not even know it yet.

I’ve lived both lives – the life of a busy, energetic and incredibly athletic person (many spoons) and the life of someone being weighed down by a total lack of spoons. Today I’m the latter and I have been for several years. I still try desperately to do as much as I can and fulfil my need to be busy, but often the tasks I’m capable of completing seem pretty meagre and even if no one assumes I’m lazy, that’s how I feel.

But it’s a non-negotiable situation. You either have spoons to spend or you don’t.

How many spoons do I have on a normal day? Probably 10ish.

My ‘Spoon Membership’ happened after an accident, which aggrevated existing problems with my spine and left me with painful arthritis and problems with joint stiffness and mobility. Until then I really had more spoons than I could count. I wasn’t even aware of my spoons. I didn’t appreciate my spoons!

For what it’s worth, when I had Covid-19 at the end of 2021 my pain increased, as did my tiredness and therefore my spoon availability dropped considerably. In the end I did nothing for the first 3 days other than give-in to the virus and let it run rampant. This was a fraction of what CFS patients are dealing with. And they have it all day, every day.

I’m loathed to repeat myself, but being a spoon is just as fluid as the number of spoons you have available and use. It can change due to circumstance in the blink of an eye. Although sometimes spoons depleat in a much slower fashion.

There doesn’t seem to be a hard and fast rule.

What’s it like to be a spoonie?

I don’t know many others besides the people I’ve met online, so i’ll use myself and the stories I’ve heard (anonymously as always) to give you an idea.

My Spoonie-ness is caused by Arthritis and Mental Illness. My mental health journey is pretty well documented and anyone who has read my written work or blog posts will have an understanding of what effects me and why. When thinking about mental health, mental illness and tiredness I know the bad days outweigh the good, and that makes living a ‘normal life’ almost impossible. You can’t plan ahead or accept an invitation. Something as simple as buying a coffee is also impossible. On the bad days I wake up with a sinking feeling and the weight of the anxiety or depression I’m trying to manage will just kill my energy incredibly quickly. I feel lethargic. Similar to the feeling you get after Christmas dinner – you’re bloated and fighting to keep your eyes open while you play Monopoly with the kids. In this state I will always lose a board game because I honestly have no idea what’s going on. I’m just desperately trying to stay awake…and failing.

From a pain perspective my arthritis is at its worst in my Sacrum (the area between the pelvis and the spine, medical term Sacroilitis) and I have arthritis, disc damage and narrowing in other areas of my spine too. Although the pain is constant, I’m not in the same pain 24/7. Just like mental health it ebbs and flows. In the last 12 months or so the fatigue has got worse and it works in unison with the pain to make it very difficult to function. Cold days impact both, so if the heating is off I’ll feel extra tired and have aching in my lower body that makes me stiff. All I can do is rest.

I have a different number of spoons available depending on the quality of my day, and I’ll normally have an idea how many I can play with the second I wake up.

But a low number of spoons doesn’t stop me (stupidly) trying to do things I shouldn’t…

On the days when I’ve been desperate to do things (write, draw, clean, read etc) it’s put me in some dangerous situations because I wouldn’t give in, abide by the spoon availability, and rest accordingly.

For example, last month I was desperate for the clean feeling you get from a shower. My partner said…

“Dont you think it’d be safer to take a bath?”

“No babe. I need a shower. Stop telling me what to do. I need a shower.” (Yes, I’m moody too).

Rather than listen to reason, I spent a long time swaying in the shower as the tiredness agressively tried to force me to sleep. I was genuinely battling to stay upright. That was a scary moment, but it helped me realise that I need to start altering the way I manage my spoons in order to live safely when I am determined to do something.

People I have known living with Fibromyalgia say they wake up feeling like they’ve been hit by a train. There is pain all over and they can barely open their eyes. Sometimes medication takes the edge off and makes it easier to get on, but other times it makes no difference whatsoever.

They go through the day praying that nothing additional is added to their plate, because the spoons for the day are already allocated and ANYTHING that changes the plans will force them in to severe pain and tiredness. Once the chores are done and the kids are in bed, they turn the TV on with the intention of watching a new series on Netflix and end up snoring by 8pm. Again, they are battling to keep their eyes open.

And the next day is the same for every Spoonie – the same process starts over again.

But… EVERYONE I know who is managing these chronic issues is still trying their best to keep the show on the road. For me, I feel like I have to prove a point because people around me just assume I’m lazy. God I’d love to be lazy. To wake up in no pain and read a book without a hot water bottle burning my back or being doubled-over as I try to have my first piss. I know I’m not alone, Whether it’s kids going to school, getting to work, exercising, caring for family, having friends over or anything else – Spoonies can’t let life stop around them just because they are low on spoons.

What do I do?

Manage my day by allocating spoons to the things that are most important. That’s it. Anything low on the list has to wait,

There’s one other thing I want to mention that I don’t see many people saying…

I live with a constant envy of people that are able to enjoy ‘normal’ lives with what seems like an unlimited number of spoons available. Having your life limited by the number of tasks you are able to undertake each day is incredibly embarrassing, upsetting and depressing. There are no exclusions. If I’ve had to spend time studying and making lunch and my energy has been depleated, I can’t just level up with a mushroom like Mario and find more zest hidden in my pocket. I can’t suddenly conjure up the ability to spend time playing with my daughter, something I would love to be able to do. No, no. She will have to come to the bedroom to visit me for a cuddle. Things like that are what makes chronic illnesses pure evil in my eyes. They steal your life.

And, unsurprisingly, that then impacts your mental illness and lowers your mental health.

It’s a cycle that’s incredibly difficult to break.

Why is there so much Spoonie negativity?

This infuriates me.

I read a quote online recently that I found thought provoking…

We see a cute young girl giving us all a smile with her bestie in hospital garb and breathe a sigh of relief that “at least it’s not cancer”

https://www.spoonie-strength.com/single-post/celebrity-spoonies-remain-invisible Jan 2022

This quote refers to the singer Selena Gomez after she was hospitalised due to chronic illness. She was working hard to start a bigger conversation about the affliction. But the reaction from many seemed to be that because she is famous, pretty, rich (basically all the things we might envy) that she can’t be in that much pain. Hence the phrase ‘at least it’s not cancer’. I know that’s an extreme comment, but the extremity of pain and tiredness felt by Spoonies is astronomically misunderstood.

The same website finished the post with another great quote:

So please remember – before you judge someone who “looks perfectly fine” on disability or before you leave that nasty note on that young man’s dashboard for parking in a handicap spot, or before you decide you are an expert on celebrity weight gain and who clearly looks like they’re abusing drugs or seeking attention…keep in mind that our illnesses don’t always make our insides and outsides match. Whether we are on the red carpet or at the grocery store.

https://www.spoonie-strength.com/single-post/celebrity-spoonies-remain-invisible Jan 2022

My own social media profile pictures and uploaded images are of me and my family looking our best. But if I’m honest, that’s the way I manage to look once a week IF I’M LUCKY. And when I do put a face on and wear nice clothes it requires so much thought and preperation. My partner needs to know when I’m taking a shower because I’ll be gone an hour and might need help getting in and out.

Just because the face you see on the internet and in magazines looks pretty, happy, well dressed, loved, busy, successful or anything else positive, doesn’t mean they are well, managing or pain-free. It’s an assumption we all have to stop making.

Hidden disabilities are as prevalent in society as mental illness. In fact, I think we’d all be shocked by the number of people we each know who are living in the shadow of chronic illnesses. You can’t assume people are well or just lazy. We’re all struggling one way or another.

I’m guilty of this too. Years ago in the supermarket car park, moaning with my partner about the person who ‘looked fine’ but used the disabled bay. I don’t know what he’s got going on, do I?

I’m writing this post on my laptop, sat on my bed, with no makeup on, I’m wearing glasses with joggers and a vest. That’s the reality of being in chronic pain. I would never let anyone but my partner and daughter see me like this. You just do the best you can with what life presents you on the day and hide on the days you need to.

Where can Spoonies get help?

This really depends on the type of chronic pain/fatigue you’re experiencing. The pain that Spoonies live with can be related to many conditions including;

  • ME/CFS
  • Arthritis
  • Fibromyalgia
  • Depression and other Mental Illness
  • Weakened immune system
  • Obesity
  • Heart Disease
  • Diabetes
  • Kidney disease
  • Cancer and cancer treatments

This is a tiny snapshot of the many hundreds of causes.

If you don’t know what the problem is and you are experiencing tiredness and/or pain, then you could call your GP, who will be able to assess the symptoms, try and manage them or refer you to a specialist who will get to the bottom of the problem and eventually get you a diagnosis.

After this there are many charities that can help with support, advice and NHS signposting if you need it.

NHS Chronic Fatigue – To start with the NHS has a dedicated Chronic Fatigue page on its website with lots of specific information on the condition including symptoms, diagnosis and treatment options.

ME Association – The ME Association is specifically to support and assist people living with ME and CFS. They have a 365 day of the year helpline that opens at various times throughout the day, where you can speak to a trained professional who will offer you help and advice on your issues.

Versus Arthritis – The clue is in the name! Yes, these are the people to call if you have questions about Arthritis. I can personally recommend this helpline after calling them a few times for help and guidance on treatments and referrals after my own diagnosis. They were very knowledgeable, very patient and very helpful.

FMA UK – Fibromyalgia Action UK is a charity that aims to support Fibro sufferers and their families. It is run day to day mostly by a team of volunteers, many of whom have Fibromyalgia themselves.

Fibromyalgia Action – Another Fibro charity, also offering support to patients and their families. They operate a helpline, online forum and nationwide support groups. The support groups specifically can be very helpful, enabling you to meet people who understand what it’s like to live with fibro that are also local to you.

Mind – One of the primary Mental Health and Mental Illness resources in the UK and vowing not to give up until everyone experiencing poor Mental Health gets support and respect. They have a dedicated helpline as well as pages of advice and support directly on their website. There are several other Mental Health charities and support websites listed on my ‘Brain‘ page too.

Diabetes UK – A huge resource offering help and support to those living with both types 1 & 2 of diabetes. They have a dedicated helpline and offer online support, local support groups and document resources too.

British Heart Foundation – Offering news, support, statistics and helpful information for anyone dealing with heart issues or concerned they might be. They have a dedicated helpline with a Cardiac Nurse available weekdays 9am-5pm and an email address too.

Just like my thoughts on mental health, there is so much to consider with being a Spoonie. The long and the short of it is, if you’re experiencing extreme pain and / or tiredness it’s important to make sure you get the help you need to help get you back to living your best possible life.

Stay safe and well. Steph 💜

*You must not rely on the information on this website as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. If you think you may be suffering from any medical condition you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website.

Steph Writes and Illustrates

“A kinder, more thoughtful world is a place we all deserve to live”

Email me: steph@creativesteph.co.uk

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