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

the parade, the party, and the recovery

It’s been a week and a half, this week. I think I may be coming round, but I can never be sure.

Disability Pride was a glorious, fun filled, smiley celebration in Belfast on a sunny Saturday. Hundreds of people paraded, danced, sang and wheeled their way up the main street and gathered in front of City Hall. Hundreds more joined in the concert, the singing and dancing. and the smiling. All the smiling. People who don’t often make it to the city centre. People who aren’t often encouraged to be there, or to use public space to celebrate who they are. It was a wonderful event, and I’m delighted to have been part of it.

Several of us had to run away early though. No tidying up of leaflets for us, or untying banners. We had glad rags to find and faces to draw on. Accidents of timing and geography meant that we had been invited to the Lord Mayor’s Installation Dinner celebrating the Best of Belfast, the unsung heroes and the forgotten citizens. I felt a little guilty being in that company, but also, I was honoured. A vast, swanky hall, 400 people in finery, beautiful food. Like Disability Pride, it wasn’t simply inclusive, it was embracing. And the Lord Mayor’s daddy made me cry.

glad rags, westie

I’ve been in bed a lot since then. Apart from the very long meeting to prepare for a presentation, ticking names off a list at a research event, spending some time on my online course, and arranging a spot at another conference (on the same day as the presentation). Spurs Fan is rolling his eyes in well experienced despair. Less pacing; more boom and bust. The booms make the bust bearable.

in which Grandma doesn’t get a kitten

The referendum on Scottish independence is over: 45% Yes, 55% No. Great Britain will continue to exist. The level of public engagement has been remarkable and the desire for change clear, so what happens next?

My niece, Little Miss Awfully Grown Up, was clear about why a Yes vote would be a good idea, “because then Grandma will get a kitten.” I don’t know if Grandma was aware of this deal. Perhaps it was negotiated with the leaders of the Yes campaign in a last minute ‘tell the people what they want to hear’ moment. You know those moments. If you’re a parent, you really know those moments- a child is playing up, displaying personality and a desire to be in control of things, and you, the grown up, make a random suggestion to shut them up. You haven’t thought it out well, you’ve just tried out various combinations of words to see if they will ease the chaos. Sometimes they cheer up immensely, behave the way you want, and then you’re stuck. What did you say? Is that possible? Does Grandma even like cats?

not actual Grandma
not actual Grandma

Early this morning, as the No dominance was clear, I saw a telling exchange on television. Yes campaigner Hardeep Singh Kohli asked No campaigner  Man in Grey Suit (it was early, I can’t remember his name) what, exactly, the promised DevoMax was going to look like. The man demurred, it was early days yet, they still had a lot of work to do. The comedian nearly exploded, “You’ve had years to prepare, how can it be early days?” But we all knew how. The ‘vow‘ was a last minute, cobbled together, ‘shut them up’ statement, and now they’re going to have to step up and deliver. Against the wishes of many in parliament, without any actual plans, and under pressure from the whole of Scotland. Closely watched by all in the UK who wonder about the constitutional situation.

The referendum is over, but the conversation isn’t. Scotland continues to lead the way.

Updates on the kitten situation as I get them.

I’d rather be broken than empty

I’ve done more in the last two days that in the previous 2 weeks. I never quite get the hang of the ‘pacing’ thing. Pacing is all about being sensible, conserving energy, never doing too much, avoiding ‘boom & bust’. It’s really hard to do. After weeks of being fit for nothing (remember the not being able to sit up time) I was able to do things. Hurrah!

There was a major clear out of Girl2’s bedroom. Apparently nearly 12 year olds going to secondary school don’t need a cupboard full of Build a Bears and random dolls. Or the picture books her mother just couldn’t get rid of years ago. I was able to cart bags of things to the garage for the charity shop, and fill the wheelie bin with rubbish, but Spurs Fan had to lift the rest into the roof space. By the time I was done I could hardly lift my arms to the washing line. Then, too late, I rested.

Yesterday Ditzy and I  got dressed up, had lunch out and collected a charity donation for the PSP Association. Thank you, fundraising engineers. I completed the current module for my Stanford on line course, Patient Engagement Design, and complained a bit. The course isn’t quite what I thought it would be- more about designing technology to make money out of engage patients than designing effective patient engagement- but I’ll give it another week or two before having a full on rant.

Then, (yes, there’s more!) we went out. Spurs Fan and I, alone and unaccompanied. We were early, because the early oldie with a stick gets a seat. We went to see First Aid Kit in concert, and they were fabulous.

Swedish sisters with wonderful voices and sensible shoes. One with a frock and fringe, the other with endless limbs and shiny shiny Abba type trousers. We expected harmonies and loveliness, we also got hard rocking, Jack White type badass (but sort of sweet) moments.

I’ve been listening to their albums for a while, singing along in the car, or while doing other things. Last night I heard lyrics I hadn’t noticed before, and “I’d rather be broken than empty” worked for me. I’d rather recover than never try. I’d rather be frustrated than uninterested. I’d rather need to sleep than be bored stupid. I try not to be silly about it, or push myself beyond all limits, but I’m not going to lie back and watch daytime TV if I can avoid it. Sometimes that’s what I need and I retreat from the world, but I hate missing the chance to sing along. “Sing with me” they say. And so I do.

Today and tomorrow? Bed.