The hard days

For us spoonies or squeakers some days are so hard! So hard because our bodies are not just our friends! Today was a day for me…I am seriously struggled to get through today because I hurt so bad. And of course when you hurt so bad, it tends to drain your emotions! You feel lonely because NO ONE (but fellow squeakers/spoonies) understand!

You sometimes want to scream because for one moment, one short moment, you just do not want to hurt! You want to know what it feels like again to get out of bed and not hurt. To shower and not struggle to open bottles of shampoo! You want to know what it is like to wake up, go to work, go to dinner, shop and hang out with your friends WITHOUT the feelings of CONSTANT exhaustion!

You want to look in the mirror and not see the weight gain (thank you steroids), the acne (again thank you steroids) and the hair problems (loss/dry—thank you autoimmune suppressants). You want to feel NORMAL! You want to feel happy, care-free, PAIN FREE!

I know for me, my normal has become pain! Intense daily pain…many days it brings tears to my eyes…..because I am too young…we are all too young to live our lives like this! But you want to know the one thing that perked me up today….Today what perked me up was when I got to hold the hand of someone who is walking in the very last weeks (maybe even days) of her life here on this earth.

So despite my frustration, my anger, or my complete exhaustion…I am glad I pulled myself out of bed today to go visit her! Strange how when you go to give to someone end up being blessed in the process!

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