too much!!!!

it all seems to just pile up until everything topples over.

i have been pretty active, keeping my mind off of all the chaos and overwhelming uncertainty of my illness.  that is kinda how i have to operate in order to just process information.  it’s always been that way…i get bad news and i have to throw myself into some project or work in order to take it in.  then, maybe, after some time i can sort it out.  when my middle son was diagnosed with autism, i went to work and worked open to close for almost a year.  when my dad died, i threw myself into planning his memorial then started a band project then let a crazy junkie hang out.  now i am steps closer to finding out what this illness is and i can’t stop writing or reading or working on the zine, shit i am even trying to start a project to help kids….

then when i least expect it, it dawns on me-“i am really fucking sick!!!!  i am really fucking sick and it is never going to be over….”  i have to fight everyday.  fight to stay at this level of sick, i have to let go of that one day dream.  this level of sick sucks!  medication boxes other people have to fill up because i can’t be trusted to take my meds the right way because my neurons are at war.  walkers, canes, wheelchairs, grab bars, handicap stalls…that is the good part.  at least those things help me do basic things without too much embarrassment.  being in public and having a total meltdown because there are too many lights and smells and noises and temperature changes, and the worst part is i know i am doing it.  i know i am reacting, but i can’t not do it no matter what.  i have to cover my ears and run…well, not run, shuffle as quickly as possible.  getting a coffee is a gamble-is there going to be too many people  who wear too much cologne, is someone’s cell phone with a horrible ringtone going to go off while the lady next to me is gabbing loudly, is someone going to cough on me…

but the worst is the holes…the holes the people around me leave.  it is unintentional.  they don’t mean it.  they just don’t care enough to learn how to not have the holes.  they don’t read to find out what this is.  they see the physical outward manifestations and they want that to not be there, but they don’t see the inside, the swollen organs, the lymph nodes, the nerve swelling, the fear because i forget how to walk or how to urinate.  it’s a non-issue the internal.  as long as they don’t see it, it doesn’t exist.  the holes.  i get so angry.  i get so hurt.  i need the support, but it is minimal.  when i try to talk about it, everyone just shuts down.  i just need some help.  i don’t know how to do this alone.  i don’t know how to see the holes.

it all seems to just pile up until everything topples over.

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