The mental challenges of a flare up

Image: Kinfolk
Image: Kinfolk

Sometimes we have bad days that we just can’t shake. Sometimes those days go on for weeks and sometimes, even longer than that.

Last week I woke up one morning feeling terribly sad, overly anxious and immensely frustrated. As my feet touched the cold wooden floor in an early morning haze, I knew almost instantly that I should have stayed in bed but it was too late; I was up and I was moody.

That week came and went, there was laughter and love and many high points but I did not lose that feeling of knowing I should have stayed in bed. That feeling is still here. I am so tired and so sore and, in the words of people with chronic pain, “I’ve lost all my spoons.”

Gourmande in the Kitchen
Image: Gourmande in the Kitchen

Have you heard of that phrase? Do you know what it means? Quick side-step whilst I explain it for those who don’t know. Some time ago, somebody decided that the chronic pain community would refer to spoons (yes, actual cutlery spoons) as a metaphor for energy. People who suffer from chronic pain conditions are called “Spoonies”, we talk about “spoonie problems” and refer to high-pain days as having “used up all our spoons.” Why, I have no idea. Are healthy people known for having lots of spoons? I assume it could just as easily be pegs or tooth-picks, but someone somewhere picked spoons and here we have it. If I’m totally honest – I don’t like it. I don’t understand the link between cutlery and energy, and I also think it’s a term that only the in-crowd understand. I would far rather we focused our energy on helping non-spoonies understand the link between pain and energy, to raise awareness and provide support. That said, I guess there’s something nice about identifying a fellow Spoonie and having spoonie chats. Anyway, I digress…

Yesterday I decided to take matters into my own hands and have a full body massage. I daydreamedΒ about it all day and practically ran through the entrance doors, desperate to feel warm hands on my back as my muscles relaxed in an instant. Instead, I experienced a small woman (who, I must say, was absolutely lovely) take me into a treatment room to lie on the floor fully clothed where she proceeded to climb on me and stretch my limbs in directions they do not naturally go. Not what I had in mind.

Image: Amber Ortolano
Image: Amber Ortolano

There’s this moment when you’re approaching a flare up when you know you’ve passed the point of no return. You know you can’t take it any more and even an easy day is difficult. I think it’s at this point you’re supposed to close the doors, go back to bed and recuperate. I, someone who is supposedly clued up about pain management, should know better. Instead of closing the doors, I use my teeny tiny bits of energy to bang down the doors and force my way into life, even though it’s starting to look a bit hazy. I’m confused, I’ve lost track of time, I can’t string a sentence together, I am sore, I am tired.

During these times, blogging is hard. I want to write about a hundred things and nothing all at the same time, and the days merge into the next into the next. Before I know it, a week has gone by and I haven’t blogged. So, with that in mind, here you have my pointless ramblings. It’s really a long-winded way of saying, sorry, I’ve lost my spoons but I’ll be back soon. Hopefully with a spring in my step.