Spoon Theory and Chronic Illness

I want one of the focuses of my blog to be chronic illness and how it impacts living the best life I can. To be able to do that, it makes sense that I should talk about the kinds of challenges I and the people I love face.  I really feel like this is easier said than done, for a lot of different reasons. 

Anyone who has even a passing familiarity with chronic illness has probably heard of The Spoon Theory, first coined by Christine Miserandino. If you haven't heard of it, her original post can be found here. The basics of it are that you have a certain number of spoons you wake up with every morning. Each activity uses a certain number of spoons. Good days use less spoons, bad days use more. If you overdo it, you can borrow a couple of spoons from the next day, but that means you start tomorrow with fewer spoons. It's a fairly simple, catchy way for chronic illness sufferers to help people understand their challenges and limits. 

Having this metaphor for what a chronic illness sufferer deals with daily was a revelation for me. I looked at Spoon Theory, and said, "Yes, this!" Here was something that expressed exactly how I felt. Of course, it's a simplified way of expressing the daily energy budgeting that goes on, but trying to explain that to non-chronic-illness folks was exhausting. 

I know how you feel, sister.

So what's my story? Why do I call myself a spoonie? I've got a few different chronic illnesses affecting my life. Some have a bigger impact than others. I have three main conditions: migraine disease, psoriatic arthritis, and spondylolisthesis. That's a mouthful, right? 

Migraine disease is the first condition that started me on the chronic illness path. I had suffered from migraines since I was a teenager. About ten years ago, my sporadic migraines became chronic. I literally had a migraine every day. It was a time of really big changes and upheaval. I had to stop working. My connection to my family suffered. I saw a gaggle of doctors, with each one telling me something different. I eventually found ways to manage my migraine triggers, and things slowly improved. It's definitely not gone, and when I push too hard, migraine lets me know it's still waiting in the wings. 

I was diagnosed with psoriatic arthritis about the same time as migraine disease. It has been the whisper in the background compared to the shouting of my other conditions, though it does yell occasionally. Achy feet and fingers are my usual baseline. I treat it just enough to prevent further joint damage. This is one of those conditions where the treatment can be worse than the disease. 

The monster that is trying to control my life right now is spondylolisthesis. Sounds exciting and exotic, right? It occurs when one of the vertebrae in the spinal column slips forward (or backward, but in my case the slip is forward) over the vertebra below it. It can cause pain and pinched nerves and all kinds of issues, depending on where in the spine it occurs. I have had leg and back pain for at least the past eight years, but wasn't diagnosed until 2017. There was much shoulder shrugging from doctors and physical therapists when I explained my symptoms, until I found the right doctor. The last two years or so has seen my mobility and stamina greatly affected. It limits how long I can stand, how far I can walk, and what I can accomplish in a day.

 

I wish my cane was this fancy. Mine is much more utilitarian.

So all that sounds terrible, right? Here's the thing: even with these terrible things, I have continued to live my life. Have I grieved for what I've lost? Absolutely. There have been days where I don't know how I can go on, and yet I go on. I have, over a long, long time, found ways to live within my limitations. This blog is one of those ways. Facebook and Twitter and other online communities have been so great at keeping me connected, and helping me find others in the same situation, to commiserate, ask for advice, and support each other. Can't go to the mall? I can shop for just about everything I need online. (I have to tell you, I've found some kick-ass presents for people I wouldn't otherwise have been able to pull off.) I have a stool in my kitchen, so I can cook without having to worry about trying to stand for too long. I stay connected to the world in ways that work for me, and right now, that's enough.