Some days it's like I forget that I'm sick and I push and pull to do all the things I feel I should. It's not until the pressure to move is gone and I'm home that I realize how much is on my shoulders daily and how much I have to bear up under. I never thought I would be in a way working part time. Non-profit doesn't mean less work. It's passion that drives you and peoples stories that remind you why you do the work. I just wish my son now 10 could see why I'm on the phone or making graphics. He's so wrapped in how much he can't stand school work. We are a homeschooly, second shift, up late kinda family. We dance outside the box. He cracks me up. Little does he realize that learning is a lifelong process it doesn't keep regular hours. It's a daily, everyday kinda thing. His smarts and passion make me smile. He comments and ask me now how my Lyme friends are doing. Until he's out playing and running around and I have a few minutes to de frazzle I realize that even though he's older and can help I'm doing the pre teenager talks already. He's changing and growing. Some days I just hope to be a decent parent and not mess him up. When I'm sick I'm always apologizing for canceling plans or needing extra rest. I honestly don't have the spoons to live at his speed. I feel guilty at times still. I work hard to get us out the door to see friends, field trips, programs. I just loose steam even after 3-4 decent days I'm back down again needing to be closer to home and rest. My momentum of this body is snails pace. While my mind is running ahead of the rest of me. We do our best to juggle all the pieces and keep everything balanced. But I'm telling you being chronically sick on top of life is like dragging a boulder around and saying you're fine. It's the oddest existence. I don't look sick but some days I feel the weather changing in my bones. Or my legs hurt as I try to fall asleep. I still worry about secondary illnesses that could pop up. Or injury that would set me back. I still can't focus at times, literally loose moments I can't get back or forget a task. It's the nagging, delaying last bit of symptoms that pull at me. I feel like that they keep me back from my full potential and it makes me so angry. Because I can see it but I'm unable to completely find remission. I want to fully move forward and be fully myself. I hate being tripped up by this body. I want to get ahead and stay there and not worry about when I might have my next setback. Survival mode is draining. I want to just live.
