Who I am in this space

Who I am with pain.

Who I really am.

I made this meme a while ago and it still applies. All these blurred lines. Sometimes functional. Sometimes not. Sometimes the pain is tolerable. Other times not. At the time I made it, I was not fully on disability- so I was disabled but ‘not sick enough’ by society’s standards- which is a brutal place to be in.

Who I am with pain.

Who I am with the pain-but what is that anyway. In some sense I think to myself with this pain and that pain and that other pain right there I can’t seem to exemplify my traits, or access my memories and knowledge when I need it, or use that working memory quite so efficiently and that processing speed seems to lag like an old computer. I forget peoples names and faces. Left becomes right, right becomes left. A hazy fog descends on my mind. All of which is true.

I call it brain fog but honestly it is just pain and fatigue. It is just the fact that pain steals space in the brain.

Sometimes less sometimes more. Like a crowded room. You’re trying to get your point across but there is just too many people in there. Pain is takes up space. Fatigue just takes up space.

So much space sometimes you can’t function at all. These days things do not get done. And there is little place for guilt. That is for other people to place onto you and for you to shrug off because, seriously, I know I am done with that business.

Other times thoughts and actions are slower, steadier and infinitely more careful. You get what you need to done. Each step accounted for. Each pause planned.

Distance becomes such a times stealer. And you cross fifteen minutes of walking like you did a marathon. Until each step is slower and slower. Pain creeps in and up. And up. Fatigue settles in like lead.

When you are sitting even, you feel each muscle in your body like it has its own space- its own essence. This particular muscle must move soon. This particular muscle can handle this pain. This particular muscle must also move soon. Shift. Adjust. Move. Stand up. Sit. Move. Adjust.

So where am I in this space and place of pain? Where can I think and be? With such careful thoughts of how to move and be and adjust and pace? Because it is exhausting, this space.

I am in the slumps and dips of pain and fatigue. I am in the act of pacing to avoid severe flares. I find myself in the pain gaps. I am the ease found on a good day.

Who I really am.

So who is that person without all that space taken up by pain and fatigue in their brain. Whose brain isn’t lagging like a Commadore 64 with all that space taken up. It can be hard to define almost. Like in moments of clarity I can see that person somewhat. But even in those moments with low to little pain, I still have other symptoms and fatigue. Or even without fatigue I still have pain. But on those exceptional days when my brain feels lightning fast and sharp as a knife, I think to myself, this is what it would be like, I guess. This is my brain. My actually functioning self, right here.

What would it be like to live in that space? What would it be like not to lag so hard my brain just wants to rest? To pace? To hold back? I’m not even sure because even on the best of days I have to pace. Because even on the best of days pacing is key to not causing flares.

I don’t actually know what it would be like without this or that chronic illness and chronic pain. I have no concept of what it would be like because it has changed me in ways that show in how I adjust to pain to function. In my very resilience to pain itself. In my very persistence and perseverance. This is the space and place I live in.

Chronic pain and Suffering