Not doing

So much of my time is spent trying to decide what to do. 

How’s my brain today? 

How’s my pain today? 

Can I walk without my hip popping out of joint? 

Do I have words to say or an empty brain space to fill? 

How is my mood? 

Do I hate everyone or can I tolerate some conversation? 

Do I have errands?

Do I care that I have errands? 

I’ve spent so much time and effort assessing my status that I just go lay back down. 

And then, when I’m not so tired, I do the whole thing over again. 

Even thinking about doing stuff is exhausting. 

I’m too tired today. 

Maladie

There is a kind of pain where every stiff and spasming muscle in the body aches. 

The joints feel like they are melting and the bones being pulled until they rip away from each other. 

Every movement sparks electric shooting pain. 

Every part of the body that is touched feels like it’s crushed against granite.  

When upright the blood pounds in your head and the entire world spins. 

This is the kind of pain that keeps you in bed for days and makes it impossible to sleep at night.

This is a kind of pain that is so hard to see through that nothing else matters. 

There is nothing but the pain. 

Aside

I can’t come up with a clever title today

I feel terrible today. 

I’m tired and sore. 

I’m moving about a foot and a half a minute. When I’m lucky enough to be standing. 

My brain is tired and keeps urging me to curl up into a tiny ball on my bed covered with a fuzzy blanket and watch just ridiculously mindless TV until I can close my eyes and sleep at a not completely unreasonable early bed time. 

I am not doing this. 

I am laying on my couch half covered by an afghan trying to accomplish my goal of writing something everyday. 

I tend to write on days I feel okay about the days when I feel terrible. I don’t think this is what I should do. 

I need/want to push past the fuzz in my brain and the weight of my eyes. To shake off the leadenness * of my limbs and bend the pain sore joints of my fingers to form the words tumbling around in my head. 

On days like this I imagine my brain as a dark foggy gray forest running up to tall black jagged cliffs and thrashing crashing ocean.* Everything is just gray. And loud and heavy. And focusing on any one thing feels impossible. 

Pulling words out of this sort of brain is difficult. 

I have gone as far as I can today. Until tomorrow then. 
* I think I’m going to start keeping track of words I make up. But definitely not today. 

* Like this but not as pretty.

Diagram of a disabled person

This is a project I’ve had in mind for quite a while now. I created this image to get it out of my head and I’m pretty happy with it.

I’ve addressed some of my heath problems on this blog but there are several others that I haven’t written about yet. This sums it up in a nutshell.

I have had issues in the past stemming from the fact that I am disabled but don’t look like it. I’ve been told I’m too young, pretty, skinny, happy etc. to be disabled and that is total bullshit. Those things and disability are not mutually exclusive.

I’ve struggled to not be resentful when I am judged in this way. It’s hard not to feel guilty when you have to continue sitting in a train seat that in another life you would have given up to the apparently more needy than you. It’s even harder dealing with the assumptions from those around you that you are oblivious or just rude. It’s hard to maintain the level of self-care and preventative maintenance necessary for my health when I’m in public and worried about how I appear to others.

So for one thing, I’m trying to worry about it less. I know that “I do what I can when I can” so if I can give up my seat to someone at some point, you can bet I will do it. And I’ll try not to feel bad when I can’t. I’m going to forget the idea I’ve had of tattooing myself with a handicap placard so people will understand the position I’m in. I’m just not going to do that.

Secondly, I’m going to do my part at representing those with invisible illnesses and educating those that aren’t familiar with people like me. And I’m hoping my diagram might give some perspective.

Diagram of a Disabled Person 1