Don’t let your DISability disABLE you

For many of us, our chronic illness has redirected our lives.  Things that we dreamt of doing no longer seem possible. Day to day activities take more out of us. We refer to ourselves as “spoonies”.  For those that have not seen this term before or wonder why we alway post this term, it is based on what we know as the spoon theory.

The theory is that most people start their day with an unlimited amount of energy or possibilities (spoons). When you have a chronic illness you start with a limited amount of spoons. Every activity from getting up in the morning to cooking dinner takes away a certain amount of spoons. Spoonies have to carefully plan their days in order to ensure they do not run out of spoons. It does t take much for us to run out and when we do we may end up borrowing some from the next day, leaving us with little to work with until we have dug ourselves a hole and need time home to recover these spoons. We may have over done it and caused a flare or who knows what. So summarize, our once unlimited amount of spoons, has become a very limited amount that we have to carefully plan out their use. If we don’t, we may suffer the next day and start with even less spoons than we had the day before.  I hope I did the definition justice. Feel free to google it if you have time.

When we start to make this idea a habit, or are psychologically used to limiting ourselves due to our illness, where do we draw the line of our disabilities truly disabling us?  Hear me out. I think this statement can catch some spoonies off gaurd. I’m not saying by any means we have control over our bodies being disabled. But we do have control over our spirit, mind set and what we want out of life. What we want to achieve. At a certain point is it possible for the mentality of the spoon theory to become a crutch? Or a “go to” therefore hindering our ability to do more or to reach the happiness in life we truly want?  How do we identify where this line is and what can we do to ensure we don’t get in the way of our own happiness?

This may be an uncomfortable post for some but I think it’s an important one for anyone that suffers with chronic illness or any disability. Why?  Because things are harder for us. We often post about the struggles  we have to endure just to make it through one day. We rant about our disease and the set backs it causes. The difficulties we face to just be us. We yearn for the understanding of those that just well. Don’t.  I have a theory that when this focus becomes everything to us, most of what we do, say or feel, we open the door for our disease to take over our inner strength that is the very thing which keeps us going.  In an essence we are doing exactly what we don’t want. We are surrendering to our illness. We are putting more time and effort into concerning ourselves with what we can’t do rather than investing it into what we can. In turn, we end up setting ourselves back and disabling ourselves even more.

I like to coin this term as becoming chronically complacent. Complacency is a word I fear the most. It is defined as “a feeling of quiet pleasure or security,often while unaware of some potential danger, defect, or the like.”. As we settle into knowing our restrictions when do we stop testing our limits and start assuming something we could do we cant.  I fear the danger for us is that the more we experience as a “spoonie” the more we restrict ourselves from conquering our goals. Let’s think about it a little differently.  As children we naturally test the limits of everything. We fight through all limitations.  We question our parents.  we challenge our teachers.  We climb trees, throw fire works at each other (ok, maybe a bit extreme), attempt new tricks off the diving board at the pool without even a second thought.  It’s in the nature of our mentality as a child.  But as we grow up this becomes less and less the case. We settle down. Our brain starts to come more into play.  We think before we act and assess pros vs. cons; risks vs. reward. This allows us to make what we think is a practical decision.  On occasion we will even decide before hand if we like something or not. We take less risks. Factor in a chronic illness and I believe these risks we are willing to take as adults become even less frequent than a healthy adult. My theory here is that we have programmed ourselves into this complacency because we have already been given more limitations than we know what to do with. So why bother, right?  What’s the point if it’s going to give us more bad days. Is one experience really worth it?  

The answer?  YES of course it is!  Our motto as sick people should always be “you only live once”!  Which I interpret as everything should be tried once!  Especially when you’re sick!  Sure we have more bad days than good, but we need to use those bad days to cross off those bucket list items that you started removing from your list as soon as your disease kicked in or started to progress. I say screw the illness that has conquered you and return to the old child like mentality of no limits!  Maybe your body will feel the regret the next day(s) depending on what it is, but your mind and soul will carry, with you, forever the fact that you didn’t let this extreme disability stop you! I have a feeling that after the mountain is climbed it may just be enough motivation to keep adding to your life list of things to overcome!

I have to admit I am no stranger to this. I have felt in the last year that I have been in a major rut. I have felt like I have settled for a life I am not sure I am happy with. The reason?  My illness. But not just my illness. I got a little too comfortable with using my illness as an excuse to cut out the activities in my life that I love the most. After I did this I just haven’t been myself. I feel like I have lost a part of me. And I let this happen. Not anymore. Singing is my passion. I miss being in a band. There’s not a time in my life I have not been a part of some singing group, band or choir. So I am snapping myself out of the complacency I have allowed my illness to create for me and I will be back in the game this Saturday. I am elated.  For once I am going to remind myself that my disability is not an inability.  I will continue to remind myself every day.  Even on the days I just want to throw in the towel and screw it!  Calgon! take me away!  I will not let my illness take away my abilities to do the things in life I am most passionate about.

I know I am not the only one of us to have done this or to be experiencing this right now, which is why I wanted to get this post out as soon as possible. Think about what your passions are and go for them. Don’t rationalize your self out of it with limitations of your illness. Be irrational. Take the risks. Don’t be careful for once. If it doesn’t work out at least you can say you tried. But if it does imagine the possibilities of what you can accomplish!  Being sick can definitely be a set back, but don’t let it hold you back. Do not let the incredible struggle be the thing that disables you. Instead use it as a motivator for the things you can overcome. Enable yourself to achieve.  We all have the strength in us, even if it’s not a physical strength. It just makes you all the more stronger and all the more accomplished to do so as a spoonie!  

~Just a Regular Sick Girl

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