Wednesday, August 29, 2018

The emergency spoon

As you know we have been traveling for over three months and we have two more to go. Lately, all this time away from home has been heavy on me for the first time in my life. I'm used to going away for long periods of time but, normally I get to one place and make it home there, in the first week I get to figure out how to navigate my surroundings. You see, when you live in body that has some sort of limitation you need to learn how to move around all the time, what I call "Read the streets" but, really is about reading everything, like how on earth am I going to get in that shower and manage to stay upright and not slip on its very slippery floor, and after figuring that out I move on to what surface I am going to use to keep my arm high enough to be able to shampoo my hair and then do it, and then work out how to get out of that shower. And like that, with everything, from getting dressed to stairs, and any sort of daily living, by the time I'm done with the morning routine of showering and getting ready for the day, I have spent triple the energy than someone abled-body has on doing the same tasks. 
Normally this is not a problem, this is what I'm used to, my life has been a constant reading of my surroundings so that I can live the life I want with no limits, but this time is harder because we change places so much, for the first month and half it was almost every day, plus the emotional weight of meeting so many different people and having to give 100% or more all of the time, there are days when we start at 6:30 am and finish at midnight, and then we get to a place where all needs to be figured out again, and that, my friends, has finally caught up with me, for the last week I've been feeling emotionally and physically exhausted.
So, last week we went to have dinner with some family friends, that happen to have someone in the family dealing with a chronic illness, and without knowing anything about what I was feeling they told me about the spoon theory, which I had heard of before but had no clue what it was about. I found it lovely and very true and useful to use in the future to explain how my disability, chronic pain, and exhaustion were connected. 
By today, after a very busy week, I had forgotten about that conversation and had moved on, but was feeling more drained than ever and was thinking how am I going to do this for another two months? As I went downstairs to enjoy the first resting day we have had in a while, something really special was waiting for me, a present from the friends we had dinner with last week, they are both artists and they had made me an emergency spoon for days like today! I took this as a sign and it was almost angelic, as something all of sudden reminded me why I do what I do and that all my aches, pains, and tiredness really mean something and that I have the power within me to keep on going. I just need some time to recharge properly and that is fine to rest for a day or two without having to do much so I can do more afterwards and keep making a difference, and it also reminded me how lucky I am to have a wonderful person (My husband) by my side that keeps going, helping me and pushing with me (literally) through everything. So, today we are both resting and recharging for whats up next. 
If you are going through something like this, I want to be your sign for today and remind you that is ok not to be ok and have to take some time for you. You always have an emergency spoon within and is to be used on you to recharge so, you are able to keep dream walking around this crazy life, and making your dreams a reality. 
"The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of living and productive tasks that may result from disability or chronic illness. "Spoons" are a visual representation used as a unit of measure in order to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.
This metaphor is used to describe the planning that many people have to do to conserve and ration their energy reserves to accomplish their activities of daily living.The planning and rationing of energy-consuming tasks has been described as being a major concern of those with chronic and fatigue-related diseases, illness, or conditions. The theory explains the difference between those who don't seem to have energy limits and those that do. The theory is used to facilitate discussions between those with limited energy reserves and those without. Because healthy people typically are not concerned with the energy expended during ordinary tasks such as bathing and getting dressed, the theory helps healthy people realize the amount of energy expended by chronically ill or disabled people to get through the day.[4]
Spoons are widely discussed within autoimmune, disability, mental and other chronic illness online communities, as an emic descriptor. The term spoonie is sometimes used to refer to a person with a chronic illness that can be explained with the spoon theory." - Source Wikipedia

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