Monday, June 8, 2015

a long two weeks

it's been two weeks since i last wrote - my poor blog baby!

so much has happened in that time.

i feel my old familiar friend shame creeping up as i begin to write this post.

my cousin sent me this quote: "Shame needs 3 things to survive: Secrecy, Silence, and Judgment."

i have been open about my journey - so it hasn't been a secret - i haven't silenced parts of it or smoothed over rough patches - so it hasn't been silenced - but i do judge myself often for struggling with mental illness. 

i understand that having a mental illness is not my fault, that i don't do these things to myself because i think it's fun or for attention, and that there shouldn't be shame in acknowledging it.

but there is - for me - always a tiny part that wants to blame myself for the way i am.

last week i spent two awful days in the hospital emu (epilepsy monitoring unit) down at utsw. i was yanked off of meds, sleep deprived, worked physically, and had SO MUCH blood drawn. i'm thinking i could start my own blood bank...

the purpose of this stay was a last resort/final attempt to get me a diagnosis about the attacks i've been having for years. 

after much testing my team came in and compassionately delivered the news that i have PNES (psychogenic non-epileptic seizures/spells) also known as conversion disorder. i was previously diagnoised with this but received no help to overcome it besides medication - which as we can see over four years later - has not taken care of the spells. utsw offers a specialized program only for people who have PNES and i have been referred there.


i am not sure what all is involved with the new therapy but from what i've heard part of it is EMDR which is a type of trauma therapy.

my neurologist was so kind when he delivered the news. he said that PNES is fairly common and that it shows my brain has created unhealthy pathways to cope with the stress i feel on a daily basis. through therapy i can create new pathways in my brain and hopefully recover completely from this.

for the first time in months, i had hope. i could see myself living with this. i could see myself dating, working, getting married, having babies/raising children, being a soccer mom, going back to school - living life! when i had the diagnosis of periodic paralysis i had no such hope. it is a progressive disease and i could not see past my next nap let alone the future. there was no light at the end of the tunnel for me with that. but with PNES i can see life - i can see myself having a "life worth living." 

i am hopeful again. hopeful that i'll be able to cope with my mental health that is affecting my physical health. hopeful that bright days really are ahead, as s has said all along. do i love that i have this? no. would i choose to go through it? no. but if i have to go through something, i'm willing to go through this. i'm hoping it will create in me more empathy and understanding for others who suffer from this not well known or understood disorder.

acceptance is the first step towards any goal. and i accept that i have this, that this is part of the way i am right now, and that this is something i'm going to have to work through. i accept that.

and in doing so, i accept myself.


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