I had someone in my support group share Christine Miserandino’s story of her “Spoon Theory”(http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) and I have then passed on this theory to my countless friends and support groups to pass on the message, “but you don’t look sick”. I have shared this with my therapist and for the past three years, she has given me a starbucks mug filled with spoons because she knows there are days that I do not have enough.
The story that Christine portrays is simple. Every time you do a task that a healthy person that does not suffer from chronic pain or major illness, such as arthritis or mental illness, such as depression, a spoon is taken away. You are given 10 spoons I believe. So taking a shower, lose a spoon, getting dressed, lose a spoon, etc until by the time you have done your daily living activities, you should have a spoon or two left, sometimes not if you are in pain. For me, just waking up requires a spoon. I wake up most mornings and the first thought I have is to kill myself. The next thing I do is I have to stand and then go down the stairs to the bathroom. These days this would require 2 spoons as just standing causes me pain. I often have no choice but to bear it and go down the flight of stairs to the bathroom to do my bodily functional duties. So this requires another spoon. Going back up the stairs to my room requires another spoon. So before I have even brushed my teeth, made breakfast, or showered/dressed for the day, I have used three spoons. I think you know where this is going. By the time I have my sneakers on and am ready to leave the house, I barely have any spoons left and you cannot borrow anymore for the day.
My days are mostly grin and bare it. I am currently out of work so that takes the trouble out of getting dressed out most days I do not leave the house unless I am really in the mood for a coffee at my Starbucks. But even on the days I am just lying in the house I am bored and like I have said, even before I get back to my room after going to the bathroom, I am already 3 spoons down for the day. Getting dressed and deciding what to wear takes extra effort. What normally took me 10 mins now takes me 20 mins to do. Twenty minutes to decide what to wear when looking at a pile of clothes. All I need to do is pick one pair of shorts or jeans and put them on but that decision is agonizing. After choosing which one I will wear, I then struggle to put them on. I think that is the reason why it is so difficult to decide because some jeans are easier than others to put on and others you just have to struggle with but when you have a foot that doesn’t have normal range of motion, you are often balancing on your good foot for a while struggling to place the bad foot into the damn pant leg. While this might be seen as funny it is not. The potential for a fall is great and that would not be funny. I am glad I only have two pairs of sneakers to wear, those for my brace and those without. The pair without I sometimes have to give my ankle a rest as the brace irritates me and walking consecutive days can lead to ulcers or other irritations on my already numb sore ankle.
So now I am dressed and all I want to do is go back to bed but I want my coffee so it’s off to the bus stop. I make sure I have my phone, headphones, watch, journal, pen, and keys which makes up another spoon for remembering all this because if I forget, it is multiple trips up and downstairs until I have these four items. Walking to the bus stop is another spoon. Waiting doesn’t really count as I can usually sit and wait as there is a bench there or stairs on the neighboring house I can sit at. Provided the bus isn’t late, the latest I am waiting is twenty minutes as I usually get there early to make sure I don’t miss the bus should it leave early or be on time. I’m usually listening to my music, what ever I am in the mood to listen to which is usually country, unless I need something a little bit with an edge, then it is rock.
When I arrive at my destination, another spoon is taken as I need to walk to my coffee house. By this time I am really tired and need a nap but you have coffee to wake you up so I go. If I am really restless, I go back to the bus stop to go home. I might go to CVS to get something like powerade or something to eat. If I’m not restless, I will stay while I drink my coffee and write in my journal or write something about how my day is going so far. If it has been more than a few days I try to give a recap of my activities so that I know what transpired.
By the time I am on my way back to the bus stop, my ankle is usually really hurting by now. If I have a pain pill I usually take it but most often I forget to bring it with me and have to wait till I get home to take it. Another spoon. Then it’s the walk home and by the time I reach my door, I am beyond tired and need a nap and meds. Yet I haven’t done anything except get a cup of coffee. This is what I go through on a daily basis. This is what my life has come down to, to use my energy to get a cup of coffee or stay home and do nothing but play my facebook games and maybe write something in my journal. I keep two. I don’t know why I do. One stays in my room and the other travels with me to the places I go. I used to write all the time but now my writing is limited by how much energy I can put into it. And by the time I am back up in my room, I think I am in the minus category of spoons…