There I am... On my bed... In the fetal position again.
My fingers covering my face as tears run into my palms from the pain erupting in every muscle, tendon, and bone in my body.
The pain is nothing new... I'm used to it, but then there's this pain... That hits every area at once and reminds me of how bad it can really get.
Then I start thinking about the future... How much worse it will get with age... All the surgeries ahead of me...
And the hopelessness comes rushing in... The frustration... The feelings of zero self worth.
Where is my place in a society that places your value on what your physical health?
I'm lost tonight... Caught in a cycle of dread and grief. Dread for what lies ahead and grief for what I've lost of myself so far.
And I wish I had someone to wrap their arms around me as I release this anguish... But the stress of companionship seems to outweigh the joy.
Who wants someone who cancels more than they show up? Someone who's always exhausted and constantly in pain?
Just thinking of it exhausts me.
For now... It seems easier to lie here... With my pain and bear it on my own.
#EhlersDanlosSyndrome #HEDS #Hypophosphatasia #softbones #MyalgicEncephalomyelitis #OrthostaticHypotension #Osteoarthritis #RareDisease #GeneticDisorder #BipolarDisorder #ComplexPosttraumaticStressDisorder