When I was diagnosed with TN over 14 years ago it was very difficult for me to find people online talking about their life living in chronic pain.  Many chronic pain diseases fall into the category of invisible diseases. Most people are not familiar with those and therefor do not fully understand or empathize with us.  One day while scrolling the internet looking for answers in HOW to live and thrive with this unfamiliar disease, I came across a blog entitled, 
Butyoudon'tlooksick.com                                                                    It is written by Christine Miserandino.  She suffers another invisible and painful disease known as Lupus.  Just reading the title of her blog you know immediately what she talks about on her blog.  She clearly is tired of being accused of Not being as sick as she claims to be because she has no outward symptoms.  I encourage you to head over to her site and give it a read.  It applies to so many people's struggles with invisible diseases.

The Spoon Theory

Christine Miserandino has become very well known for her post entitled, "The Spoon Theory."  In this post, she talks about having lunch at a small diner with her best friend.  Her friend is very familiar with her struggle with Lupus.  However, she asked Christine that day, what it was like for her to live with Lupus day in and day out.  Christine grabbed up a handful of spoons.  There were 12 in all.  She handed them to her friend.  Then she told her, this was symbolic of the basic "energy bars "she starts her day with that depicts her strength for the day. It is not merely physical strength but mental and emotional strength as well.  Most people start their day with an unlimited amount of spoons or at least a lot more than 12.   Christine went on to ask her friend to start naming off each task she does as she starts her day. As she began listing, take a shower, wash your hair, dry your hair.......Christine asked her to hand over a spoon for each.  By the time she had reached work she had used up over half her spoons!  The story goes on to share about work tasks as well as home tasks and how there obviously were not enough spoons to make it through the day.  Preparing a meal, eating a meal, all require a spoon. It is not simply using up energy but causing pain to rise with the use of each spoon. She told her friend as she was running out of spoons fast, that she must constantly be aware of how many she has and always thinking of the choices to make next in order to not run out.  Christine's friend was brought to tears by the time they finished acting out one day in the life of Christine's shoes.  I was brought to tears as I read the complete post.  Finally, someone had a very Real way of describing HOW difficult it is for those of us who live with an invisible chronic pain disease!  I immediately printed out several copies of "The Spoon Theory," to give to my family members to read.  It has become an amazing tool for us all to help me to remember to "save my spoons!" 

One day while getting ready for church I was overcome with a major TN attack.  While drying my hair I was brought to my knees shaking in pain.  A few minutes later, my son came into my room to find me lying across my bed under my ceiling fan.  He stopped and said, " I was going to ask you if we are going to church today, but I'm' guessing, No."  I could barely mouth the word, No.  My son responded by saying, " Mom, you used up all your spoons getting ready. Next week you need to shower the night before so you can save your spoons to make it to church."  He was absolutely right.  To this day, my family members tell me repeatedly when an important event is coming up, "Mom, please rest and save your spoons so you can make it!" 

Everyone's battle with chronic pain is different.  What requires several spoons for me, might not be that much for someone else.  However, it is a great tool in not only helping your loved ones understand your need to carefully save spoons, but a tool for understanding yourself as well.  I am always quietly reminding myself throughout the day, Kim you need to save some spoons or you won't make it to an event later. 

Sharing the spoon theory with your friends or coworkers is also extremely beneficial.  I have had friends become upset with me when I have had to cancel plans on them.  They might even comment that they noticed on facebook that I was out doing something the previous day, so why can't I keep my plans.  The answer is, I'm sorry but I am out of spoons.  The amount of spoons that it can cost me just to get to an event are far more than for others.  I do my best to have enough spoons for all those I love, but I never know what might use them all up.  Very often I am dressed and ready, only to realize that I am shaking so bad from pain that I have no spoons left to drive anywhere.  

Learning to save our spoons takes practice as well as lots of reminders!  

I encourage you now to look up " the spoon theory" and print it out or direct your family to the website so they can better understand Your life, as well as encourage you regularly to save YOUR spoons! 

I am not able to share the complete post here for copyright guidelines. 

Butyoudon'tlooksick.com