* Previously published on my tumbler account. *
This disease is so heart breaking, to be ill for the rest of my life makes me so angry, so hopeless.
Try to imagine being in pain everyday… having no energy… having to choose wisely what you do, knowing that whatever you chose will define the course of the rest of your day.
I am trapped in this body, no matter how hard I fight to remain normal, ordinary mundane tasks will always be huge feats for me.
Imagine for just one moment what it is like to wakeup, even after a full nights sleep, and not even have the energy to fix a morning meal, to have to pray that today will be the day that you brush your teeth and still have the energy to brush your hair, shower, and paint your face.
Put yourself in my footsteps where every step taken there is pain, where you feel humiliation because there are days you can not bath yourself, where you die a little inside as your spouse baths you, where something as simple as shampooing your hair can leave you in pain and fatigued, where knowing the person you ounce use to be is gone forever.
This is my world now. A world where a simple trip food shopping could leave you bed ridden for the week.
I havent given myself a pedicure in a month, I also have only left my bed in a socially interactive situation 1 time in the past 6 months and I have been sidelined ever since that day. It was well worth it but still crippling.
Imagine having so many people around who called and texted and hung out with you, and now when you need their support most they have turned away from you.. after all it can be annoying to hear someone say they can’t hang out because they are having a bad day.
Now imagine pain… pain on a scale where a level 5 can give you peace. Imagine working your whole life and suddenly not being able to.
Imagine humbling yourself to the governmental system to ask for assistance… to ask for the money they took from your pay (everyday since you first held a job) back and having the system tell you… you are not sick enough.
Congratulations you now know what it means to be spoonie strong.
Some days it is easier to handle and some days your hope is crushed.
You are left with a choice… roll over and give up or stand your ground and fight.
I refuse to give up, will you refuse to understand?
We are not our illnesses but sometimes we need your understanding. Every spoonie needs it’s dish….. Hey diddle diddle…..
Well thats all for now. Thanks for peeking into this spoonie’s makeup bag. To all my fellow spoonie darlings stay strong and spoonie on and remember always reserve a spoon for lip gloss.