Can’t seem to shake it.
Ever since I graduated, I’ve felt exhausted. Too tired for creativity, too tired for goals, just stinking too tired.
Right now my eyes are burning, things are blurry (and that’s weird because I have 20/20 vision), and all I want is to curl up in bed. I’m having daydreams about my bed, seriously.
First thing people ask me when I say that I feel tired is, “OH, are you pregnant?”
The answer is no.
Stop saying that. I am a responsible adult, dammit. I use two kinds of contraceptives, thank you very much! I have a plan of when I want to try for kids, and that time is not for another 5 years, and that’s only after a career, house, and trip to Japan.
So STOP jumping to that conclusion.
The other annoying response I hear is, “OH, that’s a normal part of adulthood.”
Well, I say THAT’S STUPID.
A “normal” part of adulthood is a load of crap. There’s such a thing as working too hard, or over-compensating, or being sick–all valid reasons for being tired.
AND THAT’S NOT NORMAL.
Stop brushing off chronic fatigue as normal. It’s a freaking battle! Support a person’s struggle, don’t brush it off; you’re telling that person you don’t care about them or that their pain is not valid.
And I’m sure I’ve just been overdoing my sleep schedule, or my body is boomeranging from my school schedule to make up for lost time. SOMETHING TO EXPLAIN WHY I’M SO BITTERLY TIRED.
It just sucks.
And whining about it doesn’t really help, but it kinda does, too.
There is something very cathartic about complaining. Sharing an experience is an emotional relief for a person, no matter the struggle. We are allowed to voice our aches, pains, concerns, and ailments.
There is a disease called Chronic Fatigue Syndrome. It’s a real thing. Buzzfeed does a great little info list on it that sums it up fairly well while also providing links to professionals and studies.
This article also introduced me to the “Spoon Theory,” which has greatly aided my understanding of the people I work for at my current job.
Written by Christine Miserandino, who has a diagnosis of Lupus, the Spoon Theory is both a personal account and an analogy of what it is like to live with a chronic disease; it can also be applied or interpreted as an analogy of someone living with a disability as well.
It was Ms. Christine’s story that truly opened my mind:
“Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.”
I work in a nursing home where a 100 people live. Three out of the four halls are for long-term residents, and one hall is for temporary residents. In the short nine months I have been employed there, I have seen many people come and go through the doors of the facility, and sometimes, when they go, they are no longer with us.
The spoon theory has most certainly helped me understand an inkling of what a possible day is in the life of one of my residents.
Each and every one of them is a wonderful person, who makes me laugh, who makes me grateful, who makes me feel love and hope and appreciation. I have had to say goodbye to several people already, some where I wished them good luck in their endeavors–and others, as a whisper, alone in my office where a tear is the only reminder that they existed for the time in my life.
Chronic fatigue, disabilities, disease, is a part of adulthood, but that doesn’t mean it is normal, nor should it be treated that way.
Check out the full story of Ms. Christine’s Spoon Theory here.