Tuesday, August 18, 2015

And straight into Hell...

Sorry... it's just one of those days. I didn't intend to dive right into the ugly shit that comes with being an EDS patient... but then I didn't want to sprain my thumb opening the refrigerator door this morning, either.

So... unless you've had a similar experience, you're going to have a hard time understanding this. Unless you have rheumatoid arthritis, or MS or any one of a million other conditions that can put you in similar situation. this just isn't going to make sense. So you're going to have to take my word for it.

If you haven't experienced it you can't truly understand the frustration, humiliation and shame that happens when, because you're unable to straighten your arm out you can't reach your coffee. Actually that's not the actual bad part. The bad part comes when you lean in a bit to reach it, finally get ahold of it and BAM... the same inflammation that makes it impossible to straighten your arm makes lifting a full coffee cup impossibly painful.

So yeah... something so simple and mundane as taking a drink of coffee becomes an ordeal of pain, impotence and frustration. I may give up because it's just too much. I may get stubborn and push myself.

Either way... I pay for it.

For those of us that know this scenario... it makes us feel stupid, inept and incapable. It makes us feel needy and deficient. It makes us feel vulnerable, angry and afraid.

And just to add insult to injury, our personal energy budget is painfully tight, so on top of the energy we didn't have but still just spent getting a sip of coffee, we may spend some crying, trying to swallow the frustration, or just generally dealing with the emotional fallout.

Few people will ever understand that, as much as my feet, ankles, knees and hips hurt... making it to a chair to sit down is no comfort because, at best, my hips, low back, mid back and shoulders will start hurting. Laying down is no better.

I am tired today... and having a bad pain day... I need to find a silver lining but I'm not sure I have the energy to look for it. So I suppose I'll try to pretend like I look like I'm working. Maybe I'll accidentally get something done!