In my years of chronic illness there is not much I haven’t googled or read when it comes to medicines, medical journals and general patient info about Crohns and Colitis. It’s addictive really or I’m just obsessed. I go to bed some nights and when I can’t sleep I read about other people’s stories, new drugs and diets of foods that help keep crohnies well. Most of it I already know and I have read a million times, but sometimes I read in the hope that someone will tell me something new, like a miracle cure or something! I’ve spent a fortune on herbal remedies, sprays and capsules all in the effort to remedy myself naturally. The bathroom cupboard is full but I still end up on the mega drugs!
At the weekend I read something I had not come across before, that won’t cost me a penny in the health shop, but could help with my mind-set for free… the ‘Spoon Theory’. I couldn’t believe after all these years I’d never heard of it. The term ‘Spoonie’ seems to be a buzz word in the world of chronic illness and people with long term disabilities but it seems to have escaped my attention.
The biggest most annoying thing about chronic illness is fatigue. You can never describe fatigue unless you are really hit with it, the constant grey cloud that descends on your brain make you feel like you are always half switched on, if you’re lucky, most days you are a complete zombie. It’s not like tiredness, in that you have had a busy weekend, or the Monday morning ugh, it’s a constant heavy chain around your body. No matter what you do, however long you sleep you wake up like you need to go to back bed. I have missed whole days before sleeping and it just doesn’t touch the sides.
I guess I consider myself ‘lucky’ though as when I’m in remission I avoid the fatigue plague and feel well, the cloud lifts. I guess that’s the nature of my fluctuating disease compared to some other autoimmune diseases like lupus or ME where fatigue is maybe more prominent, (everyone is different I guess). However, when I’m flaring it’s a different story, I’m like an iPhone at a music festival… completely and utterly useless.
The more you want to say you can’t do something the more you feel like a whining sloth, so I can speak for most of us sufferers in that we all tend to say nothing at all. It can be very isolating at times, you just look into people’s eyes and can see their brains thinking ‘what a hypochondriac’ or I have heard this excuse before. This is turn makes you feel paranoid, which then makes you not want to bother educating, plus the spiel is boring anyway so silence is the easiest option all round.
It’s a bit like when people compare IBS or food poisoning (both awful in their own right) to Crohn’s or Colitis. Sometimes it’s easier to just suffer in silence rather than give the lecture on medical differences. I get it because people always try and relate to their own experiences but it is frustrating, best to just smile and agree.
So back to my point, I stumbled across this theory online that made a lot of sense to me that I wanted to share…
The Spoon theory was created by a lady called Christine Miserandino who writes on her website http://www.youdontlooksick.com. One day she was trying to explain her medical condition Lupus to a friend she used the analogy of twelve spoons. As she lay the spoons out they each represent an intangible measure of a person’s energy as a unit, as clearly everyone’s energy levels are different.
Each daily task we carry out is measured by these spoons and when you run out you will not have any more spoons to complete any more tasks, until you rest and recharge. So essentially once the spoons are gone you cannot physically do anymore. Christine explains that unlike a healthy person who can wake up every day and has endless spoons. (Well, my view is that healthy people definitely have a bigger cutlery draw and a lot more options than those with a disease or disability. However I wouldn’t go as far as saying a person has endless spoons) but essentially the point is those who have their health don’t have to make the same choices or sacrifices about what they do or don’t do in a day. The burn out factor is not an everyday problem.
For the sick taking a shower might cost a full spoon and making dinner might take three spoons; these are all basic tasks that are done daily before the hustle and bustle of life. So when your spoons run out you are done, at least until you have rested. If you ignore your spoon allowance and carry on you will most likely end up poorly and flare.
I love this theory in that so many disabled people can relate in a really basic way… I’m a converted Spoonie! I don’t want to repeat her article so please do have a read on her website to get the full scoop….(Or spoon) whatever …
We can’t forget that some people are physically impaired so physical energy is a big challenge and may require a different numbers of spoons. Then there are those like me with an invisible auto immune disease in which impairment is less obvious, it’s more about keeping up with the daily rat race whilst struggling underneath. It’s amazing how many people just consider disability as someone in a wheelchair, if you use a disabled toilet and are not in a chair you are cheating the system. If you park in a disabled space but can walk out of a car you are also cheating the system, often resulting in getting abused outside the shops. People can be so judgemental, often by those who know nothing.
I have spent every day since my teens wanting a career, wanting to do well for myself, aspiring to be a modern woman by having my own money and not needing to rely on anyone. I always wanted to have a purpose, to work hard and to make a difference in whatever I did. Admittedly I also wanted to be able to treat myself to the odd designer handbag, pay for the holidays and not have to worry about money. Although money isn’t everything, and in my life it’s not a main or sole driver, but being self-sufficient is, it’s rewarding for anyone. I learn as I get older that it has come at a price. I have always worked full time and I have always lived a fast paced life. I don’t consider myself disabled and have always hid the daily fatigue and the fifteen toilet trips at work, the bleeding, the pain and the night sweats just to be the same as everyone else. Quite often I have been completely debilitated at work by my illness, have taken myself off and spent 30 minutes tortured to the brink of tears and passing out, to then refresh my makeup and head off to a meeting. It’s okay though, to me that’s always been the norm, it’s what I do like a pro. Okay, so I get kind of annoyed when people take a couple of days off for the casual ‘flu like symptoms’ , but hey I definitely prefer to save my sick days for when I’m blue lighted to the hospital – I like my sick days to have a touch more drama! 😉
I have lived with this constant over compensation since I knew I was poorly, for fear of anyone finding out that I am struggling, which in turn just leads to the boom and bust flare cycle I always find myself in. When will I ever learn? I’m like Dora from Nemo, going round in circles, you get well so you forget the pain, so you feel invincible and revert to type. Then it comes back. Ugh.
So when I think of the Spoon Theory I realise that I have literally used the cutlery draw at times in my life to get through, so no wonder the crohns cycle rears its ugly head. Not that stress is an exclusive factor to my flares but it’s a trigger I don’t manage very well. I spent my early twenties as a retail manager, working long physical hours, with a full on social life and crohns. Pre diagnosis I remember spending most of my days in and out of the bathroom, shattered. I’d then spent most of my nights out. I don’t think my twelve spoons stretched past midday most days, but I refused to miss out.
In my mid-twenties I spent three years at night school studying with a full time job and commuting, hiding awful disease, plus the social life didn’t slow down. Let’s face it in your twenties if you aren’t out with a drink in your hand then people soon don’t want to know you, you start to get missed off the list for an invite, and that wasn’t going to be me, a forgotton one. I loved my life too much, no regrets. Sometimes I’d be in hospital flaring and still working or studying, not because I was made to work by anyone, but because I didn’t want to let anyone down for fear that people would think I that I wasn’t good enough. Why did I think that? Silly human!
I guess some of it is immaturity and naivety, some of it was fear. I think in your thirties you become more confident and comfortable in your skin, most people have carved out a living for themselves and are hopefully more settled. If I look back though young people with disabilities have it tough, so much social pressure and often just diagnosed with illness, so hard for an individual and so easy to be socially excluded if you can’t keep up. I always have had confidence on my side, sometimes forced confidence admittedly, but some don’t even have that.
There aren’t a lot of spoons on offer in this theory when you are trying to make your way in the world, and find the man or woman of your dreams. If you are sick you are too busy using energy just getting out of the shower. Harsh reality…
It’s not fair is it, just because your body has failed you doesn’t mean you’re not competitive or you stop wanting to be the best you can be. You want the house, the car, the friends, independence, the social life and to find the ‘one’, twelve spoons is not enough energy to make all that happen, (unless you decide to drastically stop showering to save a bit of spoon here and there … probably not advised!). You can see why people feel isolated at any age and then the chronic illness turns into mental illnesses as well as low self-esteem – it’s just so sad.
I looked at those 12 spoons today and tried to allocate my precious energy ..
- Getting up (after two hours sleep) – 1 spoon
- Making breakfast – 1 spoon
- Showering and looking presentable – 2 spoons
- Hospital appointment (half a day) – 4 spoons
- Emptying the dishwasher! (Massive bending down chore requires effort! ) – 1 spoon
- Getting up and down the stairs (if you have seen our stairs you would know why) – 2 spoons
- Making dinner – 2 spoons
So these are some basic things I struggle with everyday currently, most are necessities some are things I do to feel normal – I can’t just sit here and rot! (I haven’t even factored in essential internet shopping, writing a blog, feeding the cat, doing some washing, organising me and the NHS system from my bed, buying baby supplies, picking nursery furniture, drying my hair, taking my medicines, seeing my family and friends for essential social interaction, making a simple drink and ensuring the fridge is full) yes I could leave it all to Matt and yes he happily would do it all, but I don’t want too.. It’s not living is it…? It’s just existing. Twelve spoons doesn’t go far right? I think I already got to thirteen spoons, so clearly nap time needs to fit in that little lot somewhere before any of the above is achieved!
Okay so I’m not a well person right now, and in time it will get better like it always does but it really does give perspective especially when working has to go back on the agenda at some point plus the full time job of being an impending mummy! (Now you can see why the wedding planning can wait a little bit!). The theory must have more spoons, or maybe a fork or a knife thrown in now and then for good measure?! Help a girl out. That’s the problem with long term illness though you can’t really win more spoons – you don’t have a choice!
Ironically working in Human Resources I spend my life looking after others at work, I’m especially protective over those on long term sick or with health difficulties, ensuring the right decision is made on how suitable a job is for them in light of an impairment – including stress and work life balance, making sure we get the best out of someone should be priority – yet I have pretty much ignored my own restrictions my whole life. hmmmm.
We all have our limits, healthy people probably have less life impacting consequences than the sick but aren’t we all in this boat of finite spoons? A metaphor we could all probably use?
So yeah at thirty I’m going to focus on my spoons a little more, maybe this will help me manage my crohns and self-inflicted stress a bit better. It is okay to say you won’t be able to do this today … it doesn’t mean you can’t, or won’t be able to do something forever… just not today. You don’t need to be the best everyday. Be kind to yourself, it’s your life, don’t kill yourself for the sake of others – what are you achieving? A lifetime of struggle for someone else or most likely no one else? For what?! A shorter life?
If we are all constantly borrowing spoons from the next day’s allowance, spoon deficit is only going to go one way… whoever you are or whatever limitations you suffer with.
I have probably over used my spoonage on today’s waffle … (guess I won’t empty that dishwasher after all!) but it is worth it if people begin to understand fatigue and chronic illness via Christine’s analogy. Even better if people can relate and take from it for their own lives. Mindfulness is key.
I keep thinking of that phrase people say, ‘they were born with a silver spoon in their mouth’ in chronic illness world ‘wealth is health’ not money or material objects. You only get one chance with that silver spoon, if you are lucky to get one at all. Protect your spoons guys 🙂