Permanently Exhausted Pigeon

I always see a meme doing the rounds on social media that says something like ‘I’m not an early bird or an night owl, I’m some form of permanently exhausted pigeon.’ This is probably one of those memes everyone can relate to to some extent. But honestly, I cannot emphasise how much this resembles my life at the moment.

In September I landed myself a new job. This was a huge deal for me: after months of drowning in job applications, keen to avoid landing a job in the education sector, I found something I could really get my teeth into. The only catch? It was full-time. And getting my body used to the rigours of full-time work would be perhaps the greatest challenge of all.

Fatigue is a real sucker. Unless you’ve experienced it, it’s incredibly hard to understand. I am one of these people who can sleep for 12 hours or more and still nap for several hours during the day. And no matter what, I am always tired.

It’s generally acknowledged by the medical community that individuals with cerebral palsy use between 3 to 5 times more energy carrying out daily tasks than those without. On an average day, I walk a good 25 minutes during my daily commute. I also make sure to take regular breaks at work, and will frequently get up and go for a little walk around the office when I can. By the time I’ve come home from work and done the usual bits and bobs around the house, I am wiped. Sometimes, I will push through and make a meal from scratch. Other days, I’ll bung something convenient into the oven, or Ben or my family will cook something for me. By 8 o’clock, I am considering getting into bed. I feel bad about this though, so I’ll usually give it til half ten and then consider going about my daily bedtime routine before finally settling down.

Once I am in bed, I tend to do a little bit of reading, before falling asleep ungracefully, probably with my mouth wide open, snoring for all the world to hear.

Next morning, my alarm goes off at 6.45 and the routine begins again.

I’ve had to have a serious talk with myself regarding reserving my energy and managing my pain. I am awful and stubborn when it comes to admitting I can’t take on the world, but living permanently exhausted is just not cutting it any more.

Pacing is something I genuinely want to work on. I need to banish those guilty thoughts and accept that I am not a superhuman. I need to schedule in early nights, make sure I eat good meals and regularly snack on healthy things during the day to keep me going. Most importantly, I need to work on accepting that this is something I can and will work on.

I am enjoying my job. It is the right thing for me right now. Working in an office means I can sit comfortably with a hot water bottle on my aching back, endless cups of tea, with a view of the city around me. I enjoy the satisfaction of seeing a project come together, matters complete and people satisfied and thankful when it’s all over. I enjoy working with people based all over the world and I am lucky to have very supportive, lovely colleagues who put up with my endless yawning and stretching at my desk. I just need to remember give my body and mind the attention it deserves at all times.

I write this whilst snuggling under my heated blanket. My spine has got it in for me today and I haven’t done anything particularly spectacular. But that’s okay. Because right now, this permanently exhausted pigeon is all that matters, and I am going to make sure I spend more of my time with that in mind.

‘Spoons’ and ‘Easy Eats’

There’s a little analogy those of us with chronic illness and/or disabilities like to use to try and describe the difficulties living with chronic illness create. This is called the ‘Spoon Theory’, and you can read this (rather lengthy) post by Christine Miserando which – perhaps ironically – takes lots of ‘spoons’ to read and understand (see here).

In simple terms, the idea is that each day you’re allocated a certain number of ‘spoons’. These spoons = energy. When someone is chronically ill/disabled, they use far more energy than an able bodied person (and I recently found out people with cerebral palsy expend between 3-5 times MORE energy than someone without CP. No wonder I’m asleep a lot of the time!).

Thing is, when you’re ill/have difficulty coordinating your body, things become harder to do, and you end up having to prioritise some tasks over others. Getting out of bed and getting dressed/doing teeth might cost me one spoon on a good day. That leaves nine to complete the rest of the day’s tasks.

Getting to uni on the bus and having to stand because there’s no seat: one spoon. Sitting in a three-hour seminar: two spoons. Getting on the bus home: one spoon…and, well, you get the picture.

If I exert myself too much one day, I just know I’m going to regret it the next. And if that’s the case, I might wake up with eight spoons rather than ten.

This can make all manner of adulty-things difficult. Before occupational therapy came round and installed some things to help me around the flat, having a shower for instance could be a real trouble, particularly because not only does my spine hurt/my neck hurt/ my right arm struggle to lift above my head to wash hair etc, but my palsy means my balance can be really off. I have slipped in the shower more times than I care to remember.

This also means preparing healthy, nutritious meals can sometimes be a real trouble. Luckily Drew is a super good cook (though he’d never admit it) and he helps me out more than I can say. However, when I’m home alone, and I have very little spoons, cooking can be a nightmare – and don’t even mention the washing up!

That’s why I thought I’d start a new section on here: Easy Eats (or something like that…I’m trying to be creative but failing rather miserably!). Of course, anyone can make these, but my aim for these posts is to create healthy, (hopefully) tasty, delicious meals easily with as little effort as possible, and I’ll try to include some hints and tips to make life just that little bit easier in the kitchen.

When you’re constantly ill eating well is absolutely essential; and, annoyingly so, a lot  easier to say than it is to do. I’m hoping this will be a useful addition to the blog; let me know what you think!

Watch this space!

Hope you’ve had a great Wednesday,

Heather x