It’s not that I don’t want to… It’s that I can’t! 

To those who envy my “luck!”

Some days (or partial days,) more lately than I care to admit, pushing through it is not an option! I lift my head and it feels like it weighs to much to hold up, I get a strange slow motion dizzy and my head just slumps, it’s not that I don’t want to be out of bed “pushing through” my day, it truly is that I cannot! 

People say they envy me on these days, they say I am “lucky!” or they wish they could be like me and spend the day in bed! Wait!!! What?!!!

There is nothing “lucky” about this, rather it be the weird spins I explained above, the severity of pain, the lack of mobility for whatever reason- I assure you IT IS NOT LUCKY! It is scary, depressing, painful, lonely, did I mention scary? Scary because of what it could be, am I in crisis and not coherent enough to know it, will I wake up from this nap? Please don’t envy my luck, I envy your health, your ability to push through it, to me, that is lucky! 

I realize this can be a term not meant as it’s said, maybe you just mean you need a nap, or you’d like a day off, but when I hear you say it I cringe, I wouldn’t wish my “luck” on anyone! 

I have had many many days where I do not have a choice of getting out of bed, I am DIS-able to get out and face life like I want to. Many of us Spoonies face life in the 4walls of our rooms, from the DIS-comfort of our beds, often times pillows soaked in tears and medication induced relief is far and few between. It is not an enjoyable day/week/Month/year of lounging ecstasy, it is not enviable. 

Yes you may see us active on social media talking of reading a book, watching a movie, or listening to an audio book, but what you do not see/hear are the agonizing cries of pain or the anguish of loneliness and depression of the person we once were and the life including career/friends/hobbies that has been lost. You don’t see the rapidly racing thoughts that come when the pain is to high and we haven’t slept in days, those moments we wonder what it’s all worth when tomorrow threatens another day just like today. You don’t see that, you envy what you imagine our day to look like, but the reality is more than most people could handle- and we do it everyday. 



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