When diagnosed with CRPS I had never felt more alone in my life. Alone in my daily struggles. Alone in my pain. Alone.
One of my co-workers and good friend, whom suffers from a chronic illness, reached out to me and really helped me realize it was okay I was going to be “sick” for the rest of my life. He also made me realize I needed a community. After many texts with my friend and hesitation on my part, I found an online community of other chronic illness and CRPS warriors. Spoonies. I learned I was a spoonie too! I belonged with people I had only talked to online because, like me, they struggled to get out of bed somedays, had limited energy to get through the day, felt isolated due to their pain or illness, and were looking for treatment options and answers. I found my spoonies.
Let’s take a step back and explain what a “spoonie” is. It all started with a chronic illness warrior by the name of Christina Miserandino. She was in college and struggling to explain to her best friend her daily struggles with pills, pain, and fatigue due to lupus. Christina struggled to adequately explain and reached for a bunch of spoons.
These 20 spoons are the amount of energy you wake up with in the morning. Each activity during the day costs a certain number of spoons. Getting out of bed…that’s one spoon. It’s a rainy day and your body is effected and aching…that’s seven spoons right there even though you didn’t do an activity. Showering and getting ready for the day…that’s two spoons. But remember, you need to consider if you’re fingers are aching buttons are out of the question or if you have bruises from IVs you need to wear long sleeves to cover up. You have to be conscious of how many spoons you have left. You can not forget about your illness. Each activity of your daily life: eating, walking, working costs spoons. If you over do it and use more spoons than you have you will have less spoons the next few days. And most importantly you can not get more spoons.
For those of us who are spoonies this is our life. Thanks to Christina it is easier to share our daily struggles. While this sounds daunting it is a relief to have a way to explain how I live and feel on a daily basis. Somedays I wake up with less than 20 spoons for no explainable reason. Somedays activities cost less spoons than they did the day before. With CRPS I never know what I am going to get and the support from other CRPS warriors has been a blessing. I have found it to be a relief to be a spoonie.
*A link to the original spoon theory by Christina.