Spoons

If you look around yourself and really hone in on those surrounding you; are you able to see those suffering from a chronic illness?    The answer is probably not.    Most of those who are fighting a chronic disease look fine.  Great even.  Invisible fighters rarely look sick and people usually can only see what’s in front of them.    This makes no sense because most of us become overwhelmed with emotion when we witness someone suffering and prefer not to see it.    So…most people try to look their best.   Looking ill is depressing BUT we only empathize\sympathize with what we can see.   Catch twenty-two.  Sometimes we humans are pretty stupid.

When I was first diagnosed with Lupus, my husband raised a good point.   “I understand all the medical technicalities regarding your illness but I still do not understand what it is like for you living with disease”.  It was then that I started to research a way that I could accurately describe it.

I found “the spoon theory” written by Christine Miserandino.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

She came up with the theory when her friend stated that same question my husband asked me.   So Christine tries to use a humanistic approach through using spoons as a metaphor for energy; to help her friend understand the effects of Lupus.   “The difference in being sick and being healthy has 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” Christine says “when you are healthy you expect to have a never-ending supply of “spoons” {spoons being energy} 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”. 

My husband would think that my evening ritual of reviewing and\or analyzing the next day’s routine and “to do” list was just my “anal organizational skills” or as he calls it “OCOD” {obsessive compulsive organized disorder} but it was really to figure out how many  “spoons” I need to get through the next day.  I sit there calculating “spoons” by the number of necessary tasks I absolutely have to complete in order to live life.  How many spoons does a spoonie use on a daily basis?

• One spoon to get out of bed (worst part of the day)
• Two spoons for lunch preparation.
• Two spoons to shower all the parts, brush teeth, spread the lotion (this can take many more spoons depending on the day)
• Two spoons for make-up, hair and dressing
• One spoon for driving all day (I drive to my clients)
• 8 spoons to get through a day of work. Overtime is extra spoons
• 2 spoons for putting away dishes
• 5 spoons dinner prep and cooking (another reason why I hate cooking)
• 3spoons for cleaning up and washing dishes
• 1 spoon for child’s homework and\or to play
• 3 spoons to bathe child and prepare for bed
• 2 spoons to complete any other household chore
• 1 spoon for bedtime hygiene routine.

I haven’t included my child’s extra-curricular activities or notes written for teachers, extra homework, and\or play dates.   I didn’t add errands and\or shopping. Grocery shopping was entirely removed from my list for the safety of my husband’s well-being.  Friday nights would turn into Frightening nights and I was the nightmare.  First of all I hate grocery shopping period {there is nuttin fun or exciting about buying food} but once you add spoon absorption and pain to the equation… it’s deplorable.   I’d rather starve.  Then there is sex…. Sex does the body good… especially if you have spoons left over at the end of the night… if not… It’s literally go fuck yourself.  Unless you wanna just lie there then no spoons are required.  LMAO! {now that’s funny}.  Weekends… especially those spoonie parents need a shit load of spoons to get through them.   Days are longer and busier than weekdays.  Some spoonies nap to get through them and for added spoon bonuses.   The more you rest the more spoons you have.   I don’t nap unless it’s on a beach… I crash hard at the end of every day.  So on average it takes about 75 to have a basic functional day.

As of late, I’ve been short on spoons and therefore I reanalyse, prioritize and reorganize my “to do” list to fit my spoon collection… something I never thought I’d collect {spoons are not as enjoyable as shoes}.   I don’t even like them…

****Blog Picture – “Hammered Spoons by Heidi” was a purchase made to assist a fellow Spoonie in paying for treatment.    She is currently fighting for her life****