But you don't look sick - The spoon theory

Spoon Theory

I decided that I would blog about my lack of energy.  I had a discussion with a friend of mine earlier this week about how people, mainly friends, don’t seem to understand that I just can’t get up and go, that I can’t hang out all night and be at their houses every night.  It frustrates me to no end that they just don’t get it.  I’m sorry but I need to reserve my energy for the weekends when I can then get the things done that I need to get done – like food shopping, cleaning and relaxing.  

Upon deciding to blog about this I thought I would copy and paste in “The Spoon Theory”.  But since it is copyrighted and I have no desire to go to jail, I am just going to link it here.  And give my summary of it. 

So this goes out to all my friends who bitch when I don’t come out enough or when I don’t want to spend every waking moment with them.  It is also for my other CF friends who know EXACTLY what I am talking about! 

The spoon theory is about a woman with Lupus explaining what it is like to be sick to a healthy person.  She hands her friend 12 spoons and tells her that is the limit she gets for the day.  Once she is out of spoons she is done for the day.  You can borrow from the next day but you never know if you will need them the next day etc.  She explains that even the simplest things, like getting showered and making breakfast, require spoons.  Each move you make throughout the day needs to be thought out and decided ahead of time.  Nothing can be done spur of the moment.  These are things a healthy person takes for granted – the ability to just GO.  At the end of the story the friend began to understand why it was so hard for her friend to come out.  But she also realized that when she did she her it was that much more special because she used one of her precious spoons on her. 

We all know (us sick people) what an average day is like for us.  We need to decide what we will wear.  There are days when I wake up and I feel tight, congested and bloated.  These are not the days that I choose to wear the button up shirt that is a tad too tight on me.  I wear the big baggy sweater that will hid everything and allow me to be comfortable and “breathe”.  I have to decide if I will shave my legs in the shower, or will bending over that much put a strain on my lungs and ruin my day.  I have to decide what to eat.  Not in the “healthy” person way either.  I have to gauge my tummy and see if there are any issues that day, will cereal be ok?  Should I go for something more filling?  Will I need to stop to get a muffin?  How much food should I pack for the day (my goodness its like food shopping in the mornings for me).  And don’t forget mornings also involve treatments that take an hour.  God help me if I wake up feeling a cold coming on, or with a sore throat, headache.  It just means my day is done before it even begins. 

Work is pretty normal for me.  Except that if I am having a bad CF day I have to conserve my walking energy.  I need to figure out what I need before I leave my desk so I don’t make 50 trips back and forth and wear myself out.  I need to space out my snacks so I am not starving by 4pm and spending a small fortune on goodies from the honor snack.  My mornings I can get a lot done and I try to get most of my walking and “heavy” work stuff done then.  I have the most energy and my lungs feel the best.  By the end of the day I am SOB and trying to breathe while coughing constantly (meds should be helping this a little soon we hope).  So I try to stick with my true desk work then.  I avoid the materials library unless absolutely necessary.  

When I come home from work I need to eat and do treatments and still get to bed at a decent hour so I am rested for the next day.  Some nights I need to go to bed earlier than others because I slept horribly the night before from coughing or what not.  

Even my days off are gauged like this.  I can tell after being up for some time if going out that night or afternoon is out of the question.  Most times I just don’t have the energy and if I splurge and go out it will throw off my whole week.  It will take until the following weekend to catch up.  I may not spend the whole day in bed sleeping.  But I may spend the day reading, relaxing or even entertaining myself online.  These have become the activities that don’t require a lot of energy and can be done easily.  If I want to go out or I have a special engagement for the weekend I need to plan in advance so I can allow myself to get enough sleep.  I need to spend the whole day at home, relaxing so I am not worn out by the evening.  

These are the things I want my friends to see and to try to understand.  I don’t want them telling me that I need to come out more.  Or that I am sad, depressed and miserable and that is why I don’t come out.  I am actually VERY happy right now and I choose to stay home so I am not exhausted all the time.  Do I wish I had the energy I did 5 years ago?  HELL FUCKING YEAH!  Do I sit around sulking about? NO.  

I hope that this blog has shed some light on my average day and an average day of someone with an illness.  No this is not all encompassing but it gives a pretty good idea of a day.  I beg of you to spend the 5 minutes reading the spoon theory and really see what I am talking about here!