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Wednesday, April 1, 2015

Do You Collect Spoons?

Image from Keep-Clam-o-Matic
On Monday I mentioned that I was out of spoons and this raised some questions.

First: yes, I am missing some actual spoons like you eat soup with because my kids like to take them in lunches and not bring them back. Spoons are a precious resource and we are usually several spoons short of a set. In every sense of the sentence.

Second: I was not talking about physical utensils, I was talking about energy levels.

I am a spoonie, ie someone living with a chronic illness.

The SPOON THEORY was introduced by Christine Miserandino, and the basic theory is that someone living with disease has a finite number of resources to spend on ordinary tasks. A healthy person has unlimited spoons or can easily renew their spoons throughout the day. Someone with a chronic disease wakes up each day with a limited number of spoons and spends them one at a time on activities.

So, a spoonie might have six spoons, they lose one getting dressed, one taking a shower, one eating a meal, one driving to work. It doesn't take long for those spoons to vanish leaving the person feeling drained.

On an average I look exactly like a healthy, able-bodied human being with no problems. I don't have a wheelchair, I don't have any obvious symptoms, I don't carry an inhaler or even wear glasses. To everyone who sees me, I'm healthy.

I'm not.

I was born with Ehlers-Danlos Syndrome, a genetic defect that affects collagen (connective tissue). There are a whole host of problems associated with this, including poor absorption of nutrients, early onset arthritis, and the ability to dislocate your joints by breathing. I grew up with this. I had the first symptoms of arthritis at 19 and was formally diagnosed with early onset arthritis in my spine at 25. When my friend went to the ER for a dislocated shoulder I laughed and called her a wimp because I thought it was normal. My shoulder pops out of joint more times a day than I like to count.

And it hurts. It hurts every time. But it happens so frequently that there is nothing to do but pop the shoulder back into place and move on.

Everyone on Twitter also knows I'm anemic. My body doesn't absorb iron properly and I've been on designer iron pills since last year. I'm an addict. I am iron dependent. No matter how many times my doctor has tried to wean me off my beautiful iron pills it hasn't worked. Without a daily dose of iron (or two) I have no iron carrying oxygen to my cells and I turn into a zombie.

When you're so tired breathing seems like a chore than you are really too tired to do anything else. All my spoons are gone at that point.

So what's it like living like this? Um... you know, some days I really don't love it. Being perfectly healthy sounds great. But at the same time, this is my life. Yes, I snap, crackle, and pop more than a bowl of rice krispies, and I'm seriously considering iron from an IV, but this isn't a horrible way to live. As chronic conditions go, this is pretty mild.

I don't need finger splints. I don't need... well, okay... I was going to say I didn't need leg braces but then I realized I'm wearing an ankle brace and I'd shank anyone who took it from me because dislocated ankles hurt like the dickens and whenever I hurt my ankle my sciatic nerve and my hip fall apart... TMI?

I'm broken, but I'm a beautiful kind of broken.

Truth is, I'm probably not the only spoonie in your life. Most of us don't make a big deal out of our illnesses. What's the point of throwing a pity party when you'll live like this your entire life? Most of us look perfectly healthy, able-bodied people. Chronic illness may be something a person keeps secret, and they'll do it for a variety of reasons.

But, if you happen to see someone who looks like they've lost their spoons there are ways to help. -- -~ Rest, food, and hydration are all important.
~ Never tell someone to just cheer up. That doesn't work.
~ Saying, "Why are you being so lazy?" isn't likely to elicit the reaction you want.
~ Depending on pain levels we may want something for the pain.
~ Extreme temperatures may make things worse. Cold air from the AC or a draft hurts my joints.
~ People with Ehlers-Danlos do have velvety skin, but please don't pet without permission.
~ Be kind.

If you have any questions about Ehlers-Danlos, chronic illness, Spoon Theory, anemia, or genetic diseases feel free to ask through any avenue you feel comfortable with. Educating people about invisible illnesses like Ehlers-Danlos is one of my favorite things to do. Just ask any of my doctors. I have a lecture memorized. :)

For my fellow spoonies out there: Keep Going! You are spoonie strong and you can do the thing! Go you!


  1. Hehehe, I have a problem with missing silverware too. Currently I'm missing forks but a few months ago it was teaspoons. They will all mysteriously reappear at some point.

    As for invisible illnesses, I understand what you are talking about. My husband and daughter both have them and I can see the effect they have. Both of them also have mixed up ideas of what normal pain levels are because they are used to living with pain. For myself, unless I'm at a state where my energy levels are so low that I look wiped out, people see me as being either overweight or very pregnant. Unless they know I have cancer and electrolyte issues, they think I'm lazy. *sighs* Oh well,

    Hmm, going with the Spoon Theory, I have a limited amount of spoons too. Some days I don't even have six though. Other days I might have as many as eight, Four or five seems to be my normal number. I need more spoons.

    1. We all need new spoons. I can usually manage three major things (grocery trip, chauffeuring kids, cooking a meal) on a bad day. On a good day I can do all that and still cook dinner and write.

    2. That;s better than me. On a good day I can manage a grocery trip and cooking a meal. If it's a really good day I can add in checking the mail or doing a load of dishes. Our place is down six steps so that means going up and down the stairs for the grocery run and to check the mail unless it comes while I'm out shopping. Six steps isn't a lot but between the low energy levels and the bad knees, it can be a challenge.