My name is Abby and I am a Spoonie. That is a new introduction I can use now, unfortunately. My fatigue is intense and very real. This is a term that many people with chronic illness use. I remember one day I was wishing there was a way I could explain how little energy I have every single day. I stumbled upon the spoon theory by Christine Miserendino’s, her and her friend were eating and she was trying to explain to her friend how little energy she has and how quickly it gets used. So she grabbed the spoons on the table and started explaining. I remember after reading her article I was relieved that there was finally a simple way to somewhat explain to other people. I also found out in the chronic pain/illness ‘community’ people use the word spoonie all the time or they use the hashtag #spooniesunite. I have always been so scared to use those words and hashtags on social media not because I was embarrassed but because I felt people wouldn’t understand. I want to try to do a better job of raising awareness this year. So back to the spoon theory. You have unlimited spoons, yes you probably get tired but you can do pretty much whatever you want, whenever you want, and so much more. The spoonies, on the other hand, we have to be very careful with our spoons because unlike you, we don’t have unlimited spoons. So, for example, a normal work day I would say I have 12 spoons to get me through the entire day. Getting up and dressed in the morning costs me 2 spoons. Going to work costs 5 spoons. Showers are 3 spoons. All the meals (breakfast, lunch, dinner 1 spoon lost each) so 3 spoons lost.Getting ready for bed/falling asleep 2 spoons. I ran out of spoons but it’s okay I can just “borrow” some that I will use tomorrow but guess what I can’t do that. Once I run out of spoons I am done for the day. My body has had enough -the pain is unbearable. Some days I push myself and borrow spoons from the next day but the next couple of days I go into a big flare up. My body can’t handle it I get migraines, I pass out, I fall, I throw up, and the pain level is rising. If I have doctor appointments I have to take off of work because as you can see I am out of spoons. Doctor appointments would be a cost of 3 or 4 spoons depending on which doctor/appointment it is.
I am a Spoonie
Do you ever wake up one morning and do something spontaneous or have a whole day of events planned? You can just walk out the door without even thinking twice about it. I can’t just go out the door. I have to carefully think about will my body handle it, is it worth it if time is cut short because I can’t last, how do I feel today, thinking about the plans for the rest of the week and thinking if my body can really handle anything extra. Is it wheelchair accessible? How long of a day will it be? Is it a far car ride. Those thoughts are real. Every SINGLE time. My life is so different now. The sad thing is sometimes the plans we had I have to cancel because I used too many spoons the day before and am too sick to do anything or I have to try and save spoons. I spend a lot of time on the couch laying down. When I am home I am pretty much always on the couch or my bed laying down trying to save energy or trying to recover. One time my mom and sister were shopping and we were in line to check out and I fell asleep in the wheelchair. I tried to keep myself awake but my body was exhausted.
A person with a chronic disease is talking about a different type of being tired than a normal healthy person. We aren’t talking about the same type of tired. I am not by any means saying you can’t say you’re tired I am just trying to help people have some understanding of what my “tired is” in comparison to “your tired”. Everyone gets tired :). As you can see above my energy is limited and fatigue is always there and can become pretty intense. It takes me awhile to actually fall asleep I go to bed around 11 or 12 and I usually don’t fall asleep until sometime after 3:00 sometimes 4:00, sometimes 5:00. Most people with chronic illness struggle with sleep even though we are exhausted -sleeping is another beast (that’s for another blog) trust me my doctors and I have tried a lot of things to help. We have tried supplements, oils, putting all the electronics away, doing the same thing every night to get a really good routine. Nothing helps. I am supposed to be seeing a sleep doctor but insurance is well…being insurance. At the one-day education fibromyalgia clinic that Dr. Gota hosted she explained that so many studies are showing that people with fibromyalgia struggle to get to sleep and then when we do fall asleep even in the DEEPEST stage of sleep our brains never stop. She said many studies show that the brain wave is still very active showing that we truly never get to rest, which is why we are always exhausted.
There are 12 spoons here pictured below. Tomorrow I have to think about how I am going to use them. So today be thankful for the energy you have and the complete freedom you have. I am thankful for the #spooniecommunity today.
The link below is the person who came up with the spoon theory and she talks about it. I encourage you to also read her article on it.
“Come to me, all you who are weary and burdended, and I will give you rest.” Matthew 11:28