Hope, can hurt...

The pain flares has me frustrated and exhausted. It hurts, it drains my body to the extent that I constantly feel as though I have just come back from a mountain hike, but I'm "used" to it. Still, it's frustrating. I lack energy to do things, moving around hurts, staying in one spot for too long hurts, being told not to worry about chores hurts ... because I want to matter. Pain is part of my life and has been since I can remember. Whether I exert myself or not, I will have pain, sometimes inexplicabbly, sometimes avoidably, so I may as well do the things that will cause me pain. Yet, those around me noticing my pain, hurts them and that hurts, so I acquiesce to their requests to leave things be when i'm in the middle of a flare. Still, it remains frustrating.

I can work, I can concentrate and focus and do all of the things that matter ... but not consistently enough. If you can't be productive all of the time, you are a liability and it only takes a single wave to knock you out of that equation. When a flare hits, focus and concentration goes out the window and productivity with it ... rationality most crucially too. I constantly fear having forgotten something or that there is something that needs attention that I am overlooking but I'm powerless to do anything about it. I just don't have the energy and there is no such thing as "chronic leave" or "sporadic employment".

It is surprising just how taxing pain is on ones brain. I don't always realize that or think of it in that sense. A person gets fatigued from physical activity, from concentrating hard, from thinking. The idea that constantly having to process the pain is tiring to my brain is hard for me to associate with "fatigue", yet it is, and apparently with good reason too. The way the pain specialist explained it to me is that the chronic inflammation and pain from my unstable joints, or "afferent barrage", leads to what is called "central sensitisation", or hyper sensitivity to pain, making a bad situation worse. This constant hammering of pain has the added tendency to overwhelm the "pain gate", as it is called, that is supposed to prevent normal sensations such as touch and temperature from being transmitted as pain so I get phases of hyperalgesia, or oversensitivity to touch causing simple things like handshakes or hugs to hurt when it shouldn't.

I'm "used" to it though and I should be. After all I have been living with it sinse I can remember ... but it remains frustrating, debilitating even. What's even worse, is the periods inbetween flares. Ironically, that is when it's most "painfull" of all ...

The cruelist act, is not in depriving someone of hope but rather fostering hope where it can not last.