My Journey With:

Hypermobile Ehlers-Danlos Syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Saturday, October 22, 2011

I don't look sick

I was reading Felicia Fibro's blog post on judgement, when I decided to write one of my own.

I don't look sick.



Me, looking "normal," whatever that is


When someone sees me without all my "gear" on, they see, someone who looks normal, minus finger splints and wrist braces. Today I'm dressed in jeans a sweatshirt, socks, crocs, and a hairclip.  If you didn't know me, you wouldn't know that most days I can't wear jeans because of allodynia pain from my fibromyalgia and stomach pain from my IBS. You wouldn't know that I choose socks carefully each day because if my socks are too form fitting against my leg it hurts. You wouldn't know that that the reason I am wearing these ugly crocs shoes is because my feet are always in agony from my flat, hypermobile feet, or that piezogenic pedal papules on my feet also cause me pain. You wouldn't know that I can't turn my head all the way, or that I have sharp pain in my neck and in the bottom of my skull at all times. You wouldn't know that my jaw never relaxes all the way and is in constant spasms. You wouldn't know that I suffer from phone anxiety so bad that I can't make doctor appointments on the phone sometimes. You wouldn't know that I need to call the disabilities office at my college but half the the semester is over and I am still having too much anxiety to make the phone call. You wouldn't know how very depressed I get for long periods of time; blogging, and tweeting as positively as I can, but not always feeling it. You wouldn't know that I can rarely leave the house because I am in too much pain, too weak, and too fatigued to walk very far or take a trip to Wal-Mart in the car-even though Wal-Mart is only 8 miles down the road. You wouldn't know that I have flashbacks daily, and that I drown in guilt over everything I do, whether I did something wrong or not. You wouldn't know that when I smell cigarette smoke I have a panic attack. You wouldn't know that a lot of times my hair is in the way, but often I can't wear a hairclip because of my headaches. You wouldn't know that I quit wearing ponytails over a year ago because it is too painful. You wouldn't know that I am in desperate need of my other Oval-8's because I do a lot of typing as a graduate student, writer, and blogger, but I can't afford them. You wouldn't know that there are days we only have money to eat a couple bowls of cereal, but I am grateful for it because this winter we often went three days without eating. You wouldn't know that when I am in a flare it gets so bad I scream in delirium, crying, until I pass out. You wouldn't know about when I cried in pain until I hyperventilated and passed out. You wouldn't know that there are days I can't get out of bed and have to be almost carried to the bathroom. You wouldn't know a lot of things by looking at me.


You wouldn't know that I am suffering.


I look normal.


Sometimes I feel like this:



Me, the last time I was in the hospital. DH brought me my pillows, a couple of stuffed animals, and my quilt from home, that my Great Grandma made. Isn't he sweet? He was never gone from my side for more than a few hours, and spent the night in the uncomfy chair by my bed. I love him so much.

Me, the last time I was in the hospital. I didn't look so normal here. ;-) When I got home my hair took two hours to untangle after all the seizures I had in the hospital. Wow, what a mess!

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