Things are just, not easy, lately. I have suddenly come to the realization that I have been hiding. A lot. Last week I was exposed beyond my comfort zone. Today, I am tired and frustrated. I just want to feel like the lady in the commercial or the person walking up our road. To open a jar or bottle without turning my back so the difficulty I am having can't be seen. Truth is, I am having trouble swallowing that pep talk.
Last week we spent several days camping with some wonderful friends. There are only so many times in a day I can do the "act normal" thing by popping in and out of chairs like it's nothing at all. I was slow, careful and clearly uncomfortable. Not just physically uncomfortable either. This was pure exposure. I was already pushing a bit and when I pushed harder, frustration and pain set in worse. I couldn't hide. I wanted to be everywhere, do everything and I didn't want anyone to see how badly it bothered me that I couldn't keep up. My little guy started swimming for the first time without a vest. "He just took off like he had always done it." My heart sank. I wasn't there.
'Suck it up. They are having fun. This isn't about you. It's about them. So, just smile, suck it up and act like it doesn't bother you at all.' I do this ALL the time. I do not want my children to look back and remember their childhood by the way I feel every day. I don't want to ruin it for them. I don't want to ruin anything for anyone. Ever.
At one point during the trip, my feet and ankles began to swell terribly. I was silently relieved. A physically visual sign that I was "unable". For once, I didn't have to say or explain for something that nobody can really ever see. I didn't have to push now and pay later. It was hard to miss my feet. Just leave me alone and stop asking. Stop making me say, "no thank you (ie, I can't)" Stop making me realize my failures. My limitations. Stop making me feel like I am not doing enough, lazy. Stop making me wonder what it is you are really thinking. Please. Stop. Stop making me feel you are disappointed in me. Stop making me realize how disappointed I am in myself. Please stop, because you are making it hard for me to keep this smile on my face and act like it is all good. Please, go have fun. I appreciate your wanting so badly for me to be there, but don't make me say it again. No thank you (I can't). It was so hard.
In the safe walls of my home, I had been putting on the greatest act ever (ha! I was raised for this!). Those few moments we spent at the door chatting. Yep. I looked great. Close the door. Standing there outside in the heat. No problem. Go inside. Close the door. I sound quite chipper on the phone, on facebook. It's not fake. That's me trying to find all the fun and positive (and truly enjoying it as much as possible). Who wants to here and see the other side? God knows, if I am trying to hide from it, why would anyone want to hear it? Or see it? I just don't want to be seen as the person I can be when I am not "on". I do this all day long. To the point where I start lying to myself and denying the much needed rest. I can't keep up.
I do my daily job pretty well. And seriously, I am far better than I was just this past fall. In fact, I don't believe I have slipped back that far since new meds have been tried. I am so thankful for that. I really am. It's the new things that come up. The yo-yo factor. I am tired. And what I find is that I am most tired of pretending it's not as bad as it sometimes can be. And I don't want to be bitter. I just want to be better. I put so much energy into the day that by the time night comes...I am simply exhausted and there is no hiding from what is really going on. In the morning, it starts all over again. By 10am I start to move more freely and make the most of that movement until later.
What I learned from all this, believe it or not, is that I actually am not all that well. For real. I believe it. Because when it came down to it, last week, I wasn't able to keep up. I had limitations. It's time to be more aggressive and honest with my next doctors appointment. It's time to start fighting harder for what I want and not be afraid of what they are thinking. I am NOT weak. This is very real. And though the course of treatment has proven helpful. It's not good enough. I demand more. I don't want to feel naked any more.