My life as a Spoonie. The Spoon Theory explained.

A “Spoonie” is a term coined by Christine Miserandino, when she was trying to explain to a friend what it’s like to live with Lupus. People with Chronic Illnesses are now using this term as it best explains what a day in the life of a Chronically Person.

Spoonie has become popular, among patients with chronic illnesses. There are now Facebook groups, online forums, and Instagram pages. You can also find videos on YouTube about being a spoonie.

A short explanation is that you have a certain number of “Spoons” every day. Everything you do takes away from those spoons. You will often find yourself out of spoons (energy) early in the day. This is a great infographic explaining it.

15 Signs That Confirm You’re Definitely a Spoonie Are you a Spoonie? Check it out here

When I was working, I’m on disability now, I would have to do everything in stages. So, let’s say I had 10 spoons for the day. I would wake up and have to wait for my morning stiffness to abate. I would then shower, after which I would have to rest. After resting for a while, I would do my hair and make up and then have to rest. After resting again, I would get dressed. This actually took more spoons than you’d imagine. So, let’s say I used two spoons. I would then go to work already tired. Work would literally use up all my spoons leaving me in pain and extremely fatigued. I would just have to zone out for a long while after work. I would love to have taken a nap, but sleep eludes me. You kind of need that nap to just help recharge.

Here is a story from another Spoonie I’m a Spoonie. Here’s what I wish more people knew about Chronic Illness

Think about it as battery power on your cellphone. The more you use the phone the power starts going down. At some point you need to recharge. Unfortunately, some of us spoonies can’t recharge. It is beyond frustrating. So now I have to haul out some superpower to make supper. Some days I just couldn’t do it. You literally cannot get up and function. The fatigue affects your brain as well, often called brain fog. So, physically and mentally you try and push through because you have used up all your spoons. Here is another view of spoons with regard to daily activities.

I like to add in graphics or pictorial representations. We all understand things differently. Some people prefer pictures. With a complicated topic like this I think it’s important to have graphics. I hope it’s helped.

Now that I am on disability, I am better able to work on how I use my spoons. I’m lucky to have a partner that totally understands and doesn’t think I’m faking it. I was sweeping today and because he knows I have been really ill he stopped me. That was a good 3 spoons I used. He knew that would contribute to my lack of spoons for the rest of the day.

One thing I’ve learned, and other chronically ill people will concur, is you will find out who your real friends are. Who genuinely cares about you. You can make plans to do things but then on the day you wake up and your body says nope, and you have to cancel. I’ve developed so much guilt because of cancelling and disappointing people. Something I’m actively working on and getting alot better at!

I was in Cape Town in December and I invited my family over to my Dad’s place. I ended up spending the evening passed out. Zero spoons. I was so disappointed because I wanted to spend time with them and have a good laugh and be surrounded by love. Instead I couldn’t even get up from the bed to just sit in their company. I could hear them laughing and having a good time as they always do but I as much as I tried I couldn’t get up. I was so debilitated. It broke my heart. This is my life. Making plans is a lucky packet… you don’t know what you’re going to get on the day.

I always suffer more when I visit Cape Town. So many people I want to see. So many things to do. What we do is get everyone in one place so I can hang out with my family. Visiting people individually is just impossible. Socialising actually takes a lot of spoons So, we do find work arounds. If I’ve socialised for an hour or two with a lot of activity that just eats up spoons so going to someone else’s house, or doing something after is impossible. I’ve learned to not give a toss about people getting pissed off with me because they don’t understand that it’s not that I don’t want to… I can’t. I literally can’t. I need to go rest after that. So why don’t you come over to me? I should be the one that’s upset that you can’t take the time to come to me but you expect me to come to you. You don’t care to understand so…. NEXT! If you love us please try to understand our daily battle.

We really try but please understand we have a limited amount of spoons

My circle is much smaller. My friends are people who understand my disease and are empathetic. I have a family who understands my disease and are so accommodating. I am incredibly blessed. I went through heartache of losing people but I’m ok with that now because I had to create a new normal in my Chronic Life. If you can’t understand that I can’t come over, that’s your problem. If you really wanted to see me, you know where to find me. Why would you not say “Let me come over to you”. To me the people who make the effort to come and bring me vegan ice-cream and goodies because they know I’m ill are the people who really care. Who understand if I have to cancel and I don’t have to feel guilty.

Okay so I’m digressing a bit, but I hope that you can relate, or it can help you understand that we are limited to what we can do in one day. I think I’m going to create a Spoonie chart of things to do and select what I will do for each day based on the spoons. Right now, I’m waking up with two spoons. Luckily, I am going to see my Rheumatologist on Monday, so hopefully he can fix. Even if it’s 50% I will take it.

Now you know what the Spoon Theory is..

Across the Internet, the spoon has been elevated into an identity. Legions of people suffering from chronic illnesses call themselves “spoonies,” tagging the term on Instagram and Tumblr, and creating Web art and digital badges featuring spoons.”
Slate’s Amanda Hess.

The term, spoonie, reminds us that we are not alone in our struggle. Our limitations are universal. Validation of our normalcy through the confirmation that we have a shared story finally quiets the nag in my mind.
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As I continue to work through the emotions of my limitations it’s great to find communities of people out there that understand. You cannot imagine how powerful it is to see that you’re not alone. If you suffer from a Chronic Illness I think you’d love this Instagram account! I absolutely love it. Here are just a few of my faves….Follow the account at: @how.u.feeling