Sometimes You Just Need a Fork….

Spoons

What is the obsession with chronic pain patients and spoons anyway?

Well…I can tell you…

Thank you to Christine Miserandino for finding a way to explain chronic pain conditions to others.

Here is just a little excerpt about the spoon theory taken from http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

(P.S. I full recommend reading the entire article to get the full impact of her story.)

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.

 

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

 

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.

 

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

 

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

 

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

 

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.”

 

While I think this theory is wonderful in its ability to bring an understanding to how chronic pain patients have to manage their days…and their lives for that matter, I have a feeling a lot of chronic pain patients are like me, and waste their spoons pretty quickly and then try not to spend the rest of the evening with guilt or regret.

I look at it this way…As long as I waste the spoon on something good I can forgive myself…

But I definitely need to stop wasting them on things like trying to be the perfect mother, trying to keep the house spotless every day, worrying about work when I’m not there, blah blah blah…all those things that don’t require my energy.

And when it comes down to it…

Sometimes you just need a fork…   Fork

Maybe the cost of a fork is three spoons.

Have you ever tried to eat a salad with a spoon?  I’m sure it would end with a lap full of lettuce and dressing stains.

Have you ever tried to keep up with a 10 month old while trying to conserve energy at the same time?

Would you ever try to get someone’s attention by poking them with a spoon?

I bet a fork would be way more effective to poke a Doctor who isn’t paying attention to your symptoms or is leading you in the wrong direction.

Sometimes you just need a knife…Knife

Maybe the cost of a knife is 5 spoons…

You can’t cut a steak with a spoon and let’s face it, steak is one of the most delicious, wonderful foods ever!

Spending the holidays traveling to see family and spend time with loved-ones is wonderful too…even if it costs me days-worth of spoons.

Have you ever tried to cut something with a spoon?

Have you ever tried to work out after, or during, a bad flare-where it feels like your body is being cut my knives?  It hurts, but you know you have to do it or you may not regenerate your spoons for the rest of the week.

*I don’t recommend poking your Doctor with a knife…reserve that only for a knife.  While Doctor’s are frustrating, having the wrong one isn’t worth the trade in for the cost of a knife.- and the fork will probably get you in a lot less trouble**

I think that chronic pain patients learn to appreciate the little things you do when you are ONLY given a spoon…

A big bowl of ice cream.

Ice cream

Help opening a jar when arthritis is too bad.

Jar-Spoon

Watching my son taste a flavor for the first time in his life on his little spoon.

baby spoon

Stirring the perfect flavor of creamer into the first cup of coffee for the day.

 coffee

It’s a constant trade in…and everyday has a different table setting.

Table Setting

Advertisements

From a Mother to a Daughter-Guest Blog

Now that you are a mother, (and a very good one!!), Jen, you are acutely aware of the powerful protective “mother bear and cub” impulse you now experience.

Anything that would harm your child, or create pain for your child, is met inside you with a passion to make it go away, fix it, or kick it to the curb!

That feeling never goes away!

This terrible diagnosis has been a undefeatable foe, and I hate it!

Now you have an additional adversary that I have no control over, Psoriatic Arthritis! And, OMG the medications, and their side effects are absolutely terrifying!

You have met the enemy head on! You fight it; being as fit as your pain allows, through therapy, (when the pain needs an extra push to subside), by avoiding excessive medicating, and by being aware of your body’s signals that tells you when rest is an absolute necessity.

My biggest fear – that you will grow too tired to fight.

So I pray. I pray for your strength. I pray for your endurance. But most of all, I pray for a cure!

So, all I can do to help is listen when you need me to.  However, I suspect that you internalize a lot of your pain and feelings, for fear that you talk about it too much.

Thank God for Trent, (God bless him), who gets to hear it all!

So, daughter, that’s how I feel. You are loved even more than Love you to the moon can ever describe!

Love,

Mom