on being a #spoonie

I do know that you don’t all have the same interests as me. I ramble on about my things, other bloggers ramble about theirs and, as readers, we intersect and interact. Sometimes I read everything you write, sometimes just bits and pieces. It’s to do with time and energy – and none of us have enough of that. However, if you feel the urge to go back and read everything I’ve ever posted, you should go ahead- it’s fascinating, and very well written. 

A feature common to many health problems is fatigue. When bones feel like lead and eyelids will only open one at a time. When turning in the bed is as much as can be contemplated. We like to think the body just needs a bit of time to recover from a trauma, but for some of us, the fatigue itself is traumatic.

The long term reader may know that I used to work full time, working with people serving prison or community based sentences, and travelling across the region. I managed staff and ran a cross-border project. There were the Bosses, but they weren’t the ones in the office every Saturday doing all the mundane tasks it simply wasn’t possible to do during the week. It wasn’t a big job, or a wonderful career, but I knew what I was doing, it paid the bills and I liked my colleagues.

Until the day I couldn’t get out of bed. I woke up and couldn’t move. I felt like the squashed characters in cartoons- that there was a Speccy shape in the mattress and I’d have to climb out of that before I could begin to figure out how to get out of the bed. Eventually I did that and got Girl1 & Girl2 to the child minder, four doors away. Now I was up, maybe I could go to work? But, wait, … what? Where did my brain go? Why did I need to lie down again? My head was full of cotton wool, and the rest of the world was happening at a distance. I was behind a glass wall, unable to connect physically or mentally with my ‘normality’.

For months I kept expecting to go back to work on Monday. I fully expected to get back to my life.

That was years ago. My life changed. I know now that even part time work is beyond me. I do little things and I recover. I prioritise- the floor always needs washed and the clothes are crumpled- but some things get done eventually. I sleep a lot. And when I  gather myself and head out to do the things I do, somebody will say ‘but you don’t look sick’.

That’s both a blessing and a curse. It means I can pretend, behind a façade of normality, with poor health not being the dominant feature of me. Alternatively, unless one is visibly unwell, society is too busy to make allowances. If you don’t look sick, you’re expected to move and think at the same speed as everybody else. You look able bodied, why should you sit down? The world reacts differently to me on the days when I need to use my stick.

It feels impossible to explain, impossible to believe, that there are thousands of people in similar circumstances. For me, happening across the Spoon theory was a lightbulb moment. In it, Christine explains how she manages her energy every day. It applies to many of us. A ‘spoon’ is a finite amount of energy- I only have a certain amount of spoons for the day and every damn thing uses energy. So I have to choose. Every single thing I do. Nothing is automatic, or squashed in around the edges. If I overextend myself and ‘borrow from the next day’, then that’s a choice to have less energy the next day/ week/ month. Is it worth it? If you’re not familiar with the Spoon theory, take some time to read. It’s a wonderful piece, explaining the seemingly impossibly vague as something very tangible. Years later, its power still makes me cry.

The spoon theory by Christine Miserandino http://www.butyoudontlooksick.com @bydls

t shirt girl with spoons

 

Christine’s theory has been adopted by so many that ‘spoonie’ is a term that patients, bloggers, and social media people use to describe themselves. One can buy jewellery,  or t shirts celebrating spoons. It captures a defining feature of our lives- we can never do all the things we want to do. We need to plan and prioritise and miss out. All day, every day, we spoonies need to make decisions about our energy.

Can I go for a walk and help with homework?

Can I read course materials and blog posts?

Can I travel to an event and participate when I’m there?

Can I dust and be awake for the girls coming home from school?

Can I sit and read?

Can I be chronically ill and be myself?

 

tshirt from www.thepillowfort.co.uk

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6 thoughts on “on being a #spoonie”

  1. I read every word you post on this blog I too have CFS have had for 25 plus yrs I’ve read and followed ” thespoonie” blog I like the ” but you dontlook sick ” part not the spoonie part can’t identify with that and I love Jake kisses to him Keep up the good work…..my best…PKK

  2. The spoon theory is a wonderful way to address the limits of your energy, Fiona. I had never read a description of the onset of your illness, and this was a very good post for me to read to understand the beginnings. I have experienced CFS with some of my friends, and I still remember the “dinosaur era” when people criticized and thought it was all in their heads. You have a voice that reminds us all of what you’ve lost and how hard it is to hold on to what you have. I wish you a bigger drawer to house your spoons, my dear friend.

    1. I’d never have imagined that I’d still be unwell. And if I had, I have expected to be ‘managing’… The boom and bust style is NOT recommended, but it seems to be the only way I stay sane. Bigger drawers always welcome 😉

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