I’m currently sitting in what I lovingly call the “green room.”
In the middle of this way-too-brightly-painted-green room sits two large chairs, a single IV station, and sickness. I can’t help but wonder if the bright green walls are meant to distract from the sickness?
It’s in this green room I receive my monthly Multiple Sclerosis infusion of Tysabri.I have also planned to Typically, someone else sits next to me and receives their infusion as well. But today she missed her appointment.
Last month, I was so eager for my appointment, I showed up 24 hours early!
Just like Magnified Health Treatment they helped me to give dependency on this drug, and the fact that after about two weeks, I start counting down the days ’til my next appointment, I can’t fathom missing this treatment!
Anyway.
The reason for my post … not whining or complaining, as that wouldn’t bless anyone. More like I’ve come to realize, when I share about my struggles with MS, I’m raising awareness. And that’s important. Especially with this mysterious and exceptionally crappy disease.
Awareness.
And I’m thankful for others who believe in awareness. Of any kind. Not just MS, cancer, diabetes, or the like.
I’m thankful for people like my friend Fiona, who posted a link to The Spoon Theory on Facebook. The Spoon Theory? It sounded really weird … what in the world?!? … what do spoons and chronic disease have to do with each other? Needless to say, I was more than intrigued.
As I read through the article and began to understand The Spoon Theory, I kinda fell in love with the author of the article {and website ButYouDontLookSick.com}.
Christine Miserandino, the author, suffers from Lupus. But as I read through, I realized her theory — analogy — applies to anyone suffering with chronic disease, even stress, grief, or a difficult life situation.
You see, the day after I read this article I was talking with my friend Terrie about a situation she had recently encountered, and I was able to share how The Spoon Theory applies to her life right now … and maybe always.
Maybe The Spoon Theory is something we could all learn from.
I have this really bad habit of not indulging in self-care. The honest truth is, sometimes I just don’t have the luxury of self-care. Being a single momma to four girls is hard work.
And because — to others and even to myself sometimes — I don’t look sick from the outside, I somehow can’t give myself permission to rest. And honestly … that said, sometimes it’s just plain near impossible to find a minute — or ten — to rest.
You might be wondering how The Spoon Theory plays into all of this? If you didn’t read Christine’s full article, here’s the gist of it:
Christine was out with a friend one day and the friend looked her straight in the eyes and asked what it’s like to live with a chronic disease. Christine was perplexed because the friend had walked this path with her for many years — she’d seen her highs and lows.
But the friend wasn’t satisfied with a “fluff” answer and pushed even harder:
“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.”
Christine thought long and hard about how she could explain it in just the right way, and here’s what she came up with …
She and her friend happened to be in a diner at the time, so as Christine contemplated her answer and looked around, it came to her. She grabbed every spoon nearby and gave them to her friend.
“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.”
Christine then asked her friend to talk through what a normal day’s activities looked like. For each “task” a spoon was taken from her friend. As her friend walked through her morning — she hadn’t even gotten to work yet — and already had six spoons taken from her.
By dinner, she had one spoon left and had to decide how best to use it. If she cooked, she wouldn’t have the energy to clean up after.
Reading The Spoon Theory really struck a chord in me. Somehow I feel I need “permission” to slow down, take it easy. Again, I truly don’t always have the luxury of rest, but there are times dishes can wait, and there’s nothing wrong with three nights of pizza. As another side … when one doesn’t look sick, one’s kids don’t realize they’re sick, and therefore continue to be demanding as … well … as kids are known to be.
Anyway.
My health seems to be rapidly deteriorating. My exhaustion level is at an all time high … pure and utter exhaustion. I had a doctor’s appointment the other day — in the middle of doing the “balance test,” she told me to stop so I wouldn’t hurt myself. My legs are continually getting weaker each day and I fear I may need to pull my cane out from hiding. These are just my newest symptoms. I still have the usual suspects {my usual suspects, as MS symptoms vary from person to person} — facial numbness and twitching, stabbing pain in my feet, along with a couple other unflattering issues — those are my most annoying symptoms.
And if you read through the list, none of these symptoms are visible from the outside — which comes back to the title of this post, “But you don’t look sick.”
For people like me, who have a hard time resting for “no good reason,” it’s very hard to give myself permission to rest.
But when I read this article and could visualize the spoons as my energy {and health level}, I felt like, “YES! That’s exactly right! I’m not healthy and I don’t have an endless supply of spoons available.”
Although I’m not as sick as Christine, her thoughts below helped me understand I need to be better — and not feel guilty — about self-care.
“It’s 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.'”
As I mentioned, I think we could all learn something from The Spoon Theory.
1) not to judge others, as we truly don’t know what they’re going through.
2) we need to take care of ourselves — we should never feel guilty about a little self-care
It’s not easy … but I’m learning. And truly, if I don’t care of myself, who will?
oh sweet friend… what a blessing, for you to share this. i pray everyday for your healing, and now maybe i know a little bit better how to pray while we wait for that answered prayer. just sitting here with tears in my eyes, hoping that your spoons will cary you through, and that God will keep a few in His pocket, ready to pass along when you need them most. xoxo love,love,love you…
ahhhh … praying for God to keep a few spare spoons for my taking … yes! i love you friend!
Tracie, thank you for this post. Your message today will help many people to have a more enriched life by being understanding and compassionate. My beloved husband, Gary, had severe heart disease; but on the outside, he looked like a very healthy man. One day, he came home and told me about the verbal abuse he encountered in a parking lot. Why was he in handicapped parking? The message is clear. We are so quick to judge others, when we don’t know the whole story. One of my philosophies is to hold back on judging people . . . give them a chance. Try to put yourself in that person’s shoes. What are they dealing with? How can I make their day better? Gary is now in God’s care and happy in Heaven. The world will be better, when each of us choose to follow God’s guidance and help versus hinder each other. The world would certainly be a better place if we followed this path. You are amazing, strong, compassionate, and loving. Don’t ever change . . . xoxo
“The world will be better, when each of us choose to follow God’s guidance and help versus hinder each other.” YES!!
Love this, Tracie! It is so true. I feel like I hold my son James’s spoons and can tell when he’s running out (autism is often considered an invisible disability since there are no physical signs). I appreciate your encouragement not to judge others. Being aware of the invisible needs and struggles of others helps us be more compassionate. Thank you for sharing your story!
thanks for your note sandra! i love getting the inside scoop to your journey with james via instagram! here’s to awareness!
Tracie, this post is so heart moving as you share your daily struggles that nobody can see. I feel so muchfor you physically. We are all fighting a hard fight whether with MS, anxiety, or a loved one with mental illness. Wouldn’t it be great if our girls only knew what we went through as loving, unselfish mothers. They would know that some days we get by on prayers. You are a blessing, sharing your ups and downs!
Cristy
Thank you for writing this, It made me take a long hard look at my life, sometimes you just need to see it in black and white, and thats what you have done for me. As women, mothers, we put ourselves last most of the time, but when we fall everyone falls, so if we sometimes put ourselves, first no one would have to fall. Thank you xx
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