The Fabula Rasa

So last night's dream was me essentially fighting an enemy but that enemy was able to control my movements. It was set in a landscape of rolling green hills with rocky gray outcrops and blue sky. Everyone seemed oblivious to it except me. The black dressed ghostly army leader didn't want to destroy our group at this time so he (yes, the entity felt male) encompassed out group in a black shroud while his army moved around us. It guided us to a location where he started interrogating us on our fears. It even sliced my fingertips to pry the information out of me.......

It led me later today to reflect on the dreams message and it hit me right at this moment. Pain. Pain is something I live with EVERY single day for as long as I can remember with it getting worse hitting puberty. It has influenced or outright controlled my life.  Unless you experienced it yourself, how do you describe the profound effect of constant pain? The feeling? The effect on your daily life? Sometimes .... it is a sharp pain, a deep ache, a mild discomfort with one of the worse a grinding kind of pain? Sometimes it is all of them at once... and every joint. Where even a mild injury can be a lifelong companion. I'm one of the lucky ones where at least I do not dislocate my joints but damn sure if it hasn't almost happened to me once or twice.

A perfect example where I have to be constantly vigilant is climbing the stairs. Actually pay attention to the mechanics the next time you climb the stairs. I actually climb the stairs at a slowish pace to make sure I'm using the correct muscles and alignment. Start with placing that foot on the step. Where is most of your weight? Is your knee at a 90 degree - with the knee not beyond your ankle? Start shifting your weight to climb the step. Did you lean forward or backwards? Is your knee past your ankle? Is your foot completely straight or angled off? All these little things make a difference in preventing injury. Yes, it may seem overzealous to the uninvited members of the EDS club but a simple slight change in body mechanics can mean pulling my knee or my hip with.

I've been feeling myself bottling my emotions especially rage. Rage for multiple reasons, one of which why do I have to live with pain every day so little to no relief? Having so many allergies and intolerances... I actually am outright allergic or so hypersensitive to opiods for pain management. I've had anaphylaxis with Vicodin, Valium, Toradol, Morphine, and Excedrin Tension Headache. Even Tramadol caused me to struggle breathing. I felt a weight on my chest (wasn't drowsy and fully awake to voice my concern) so off the med they took me and nebulizers asap given to me. Good days are mild aches that I can ignore going about my usual day. Bad days is when every part of my body aches especially with my hips and knees shrieking.

One of the things that piss me off Disability. It is pure ignorance on those in the deciding committee that EDS was not a qualifier. If those who made that decision were personally or had family affected by EDS, how many would suddenly change their minds? Would they actually be able to hand a week's worth of our pain? Of our daily body mechanic awareness?

A couple of website cite similar information about EDS and Disability:::
"Please note that while the listings for arthritic and connective tissue disease under Immune System (Listing 14.00) appear to be applicable to EDS, Social Security has clarified that they DO NOT apply to EDS because EDS is a genetic disorder, not an immune system disorder."

Well, all I can say is FUCK YOU.

PS: If I look tired that because I usually am. At the end of the day my knees and hips are usually really aching.