Tuesday, September 17, 2019

the multifaceted me


So i'm a zebra
I have hEDS (hypermobile Ehlers danlos syndrome)- 
This is why my body acts the way it acts.
And doesn't act the way it should.
This is a genetic connective tissue disorder, my connective tissues are like limp noodles instead of new rubber bands.

I have anxiety and depression 
I have a sleep disorder (insomnia), a nerve disorder (RLS and possibly more)

migraines with multiple triggers (dehydration, change in weather, bright sunlight, neck instability, not enough sleep, not enough food, some scents/candles/oils/perfumes)

my thumbs are permanently dislocated, need to wear rings and wraps and custom made hand braces.
i run into things all the time because of my proprioception  (from EDS, effects my balance, my hands are floppy so i drop things)

my muscles are weak, my tendons are stretched out
my skin is so soft i don't know when it's too dry, it's stretchy, it's sensitive/easily cut myself

also heat/cold sensitive because of POTS- because of EDS (get lightheaded, get brain fog, forget things, can't handle hot tubs or cold air or direct sunlight very well)

because my joints are floppy, my feet flatten when i stand, i had to have custom made insoles. i have unstable ankles, they roll/sprain easily. my toes hurt 
i have morton's neuroma in my right foot 

I have thoracic outlet syndrome, functional scoliosis, GERD/reflux/IBS
I have dysfunction of my SI joint, pelvic floor
scapular dyskenesis

my neck has straightened and partially reversed (very unstable)

chondromalacia patella

bursitis of the greater trochanter, knees
bicep tendonitis

tinnitus in both ears, TMJD causing teeth grinding, jaw joint popping, sore jaw muscles 

i have multiple food sensitivities (gluten, soy, lactose, hard beans, refined sugar, acidic foods/tomatoes/grapefruit/oranges/lemons, food with nitrates/hot dogs/red wine/bacon/sausage, fatty foods/beef)

.....
I'm also an Aspie (high functioning autism, Aspergers)

i have a hard time putting my thoughts into words verbally, that's why i write

i'm a talented musician (singing, piano, flute, tried guitar)

i'm a talented writer
i'm a very craft oriented person, working mostly with textiles and accessories 
i love to help people, no matter what that means

i'm good at painting nails.. another art form and hobby for me
and reading, i love to read. mostly informational and/or research

i'm fairly poor at self-care, but i'm trying

i'm not good a school.. i can't retain the information. i'm a terrible test taker

i'm really good at focusing when i need to. 

when my thought or project is derailed, it's very hard for me to change focus, and then get back to what i was doing. 

i've never really felt like i've fit in any specific place.. i've mostly made friends with other people who are "loners". i've never felt quite comfortable with people my own age, either people who are older or people who are younger. 

when i'm asked a question, i have to take time to answer because i take things so literally, and i think of all the different aspects of the topic/question. 

2 comments:

Gui said...

Hi there!
My name is Guilherme, I'm 32 and live in Brazil. Recently I've been clinically diagnosed with hEDS and I was also diagnosed with Asperger's in my childhood. I can relate to every symptom you've listed, and for some reason it's comforting to know I'm not alone in this. Since I was a kid I've had so many different health issues and my parents never suspected they could be related (hiatal hernya, postural hypotension and tachycardia, aortic root enlargement, joint dislocations, chondromalacia on both kneecaps, osteopenia that resulted in a broken elbow while playing catch and some bone fissures from running and weight lifting, two ruptured eardrums from sneezing, severe anxiety, cold hands and feet all the time, etc.). I was prescribed a beta blocker and some vitamins and I feel a little better already, but I would like to know from your experience if you could also share some other therapeutic practices that may have been helpful.
Kind regards,
Guilherme

Cami Court said...

Hi Guilherme! It is very good to know we are not alone. :) I have found that going to physical therapy, and once finished, following the at-home exercises is VERY beneficial. If you don't have access to this, I recommend looking up some youtube videos, even, for exercises for hypermobile people. I think the hardest part of movement for me is figuring out where regular movement is supposed to be because I'm so used to moving further than normal. It's so good to feel better. :)