Doing the Sums

⚠ Warning ⚠
I’m not feeling well at the moment so this isn’t a particularly fun post.

Like living with a chronic illness, this post is a result of a culmination of little things. Hearing a colleague describing a flare that had me off work for a couple of weeks last year as “he’s got a bit of a bad back” or a different colleague telling me that he was unable to put his socks on yesterday because he pulled his back. (I’m feeling a bit guilty about my reply that this is my standard setting and the reason that I wear “invisible socks” that only cover my toes and heels.)

Thinking about it, it’s probably more a reflection on how well I disguise the true effects of Ankylosing Spondylitis. The medication and stiff upper lip together helps to show that having a disability doesn’t necessarily mean that you’re completely out of the race. But it takes its toll.

Ever wonder why I jokingly turn down social invites? Sure, part of it is that I’m actually quite antisocial (but I’ve learned how to fake interest for work purposes). And another part is that I’m an introvert working in an extrovert’s job (again, I’m a bloody good actor!). 

#keepinitreal – Day 3

I’m functional again! Just another 12 days until I go through it again… But until then, I’m off to work. Because of the way I’ve felt,  I’ve had a couple of days off my exercises and I’m now feeling rather stiff (the result of not doing my physio). 
I’ve also spent a lot of time over the last couple of days resting, lying in bed listening to Big Finish Dr Who audio plays and trying not to make my head or stomach work. So I should be full of energy. But the reason that I’ve been resting is because I’ve been having a fight with my immune system – so that’s not going to happen! 

Thankfully, I stopped at the shop on my way to work and bought myself some plastic spoons. I know that it’s not healthy, so please don’t bother to tell me. I need to be able to function fully for work, so I supplement my energy levels with caffeine. 500ml of energy drinks on my way to work (it also helps to take my meds) 2-3 large Americanos with extra shots through the day and another 500ml energy drink in the afternoon. 

I’m hoping that these #keepinitreal posts are helping people to understand that there’s a lot more to appearing normal than you might think! 

That’s My Spoon.

When I was looking for more information on the Spoon Theory I found out that, what I thought was a nice analogy and cute story, was actually more contentious than putting the milk in first. (Just to clarify, that’s not contentious, it’s just wrong. Listen to George Orwell, he knew that back in 1945!)

There are (believe it or not) discussions about who’s “allowed” to use the Spoon Theory. Everyone agrees that it’s OK for people with Lupus to use it, Christine Miserandino herself has Lupus. Because Lupus is an autoimmune disease almost everyone agrees that they’re covered. Most people are fine with it being used to describe the fatigue symptoms that a lot of people with chronic physical disabilities experience.

There Is No Spoon.

Fatigue isn’t just “feeling tired”. Everyone feels tired at some point. It’s coming out of the other side of tired. It’s feeling your muscles aching constantly. It’s fighting to keep your eyes open and not even having the energy to smile. I’ve described it before as that feeling you get when you have the flu. Imagine having the flu for years, sometimes decades, and then think about how tired you’d feel. *That’s* fatigue.

Christine Miserandino wrote a fantastic analogy for fatigue in people with chronic illness. In it she tells the story of a meal with a friend where she used the spoons from the tables around her to demonstrate energy levels and how fatigue makes it dwindle faster. It’s called the Spoon Theory.

It’s a great read for those who aren’t aware of it and is an eye opener for those who haven’t considered it. The theory helps you to think about the effects of daily life on people with a chronic illness. Every activity has a cost in spoons and each one will whittle away at your store. For people with chronic illness this means that every activity needs to be considered.