So much to say swirling in my head, but I am too fatigued and overwhelmed to put the words in an order that makes sense. But crabby seems to sum it up. I am crabby, short tempered in my head, and trying very hard to not take out this frustration of the past week out on everyone else. Because I know at the base of the anger, which is an emotion I don't get very often, I am just plain scared that this spiraling health issues will fail to get better and only get worse. Because it seems just like when I can handle one set of circumstances, I am asked to adapt to a host of others, and this week has left me mentally and emotionally fatigued. Two days ago I pruned my roses in front of my house. Twenty minutes, I pretended everything was normal, just a normal healthy 39 year old, sitting on a step stool, wearing pink gardening gloves, on a beautiful fall day - clipping off rose hips. People walking by, wouldn't give a second glance, my dear Sophie laying near by, soaking in the sun. I also had Addi over for an hour that day or the next, can't remember, we played, "mean Queen" and she didn't notice when I let her watch Olivia that I was in the dining room breathing in and out of the nebulizer. Three year old bliss, I never tire of watching her, and was thankful for the fact that she didn't know what energy that hour and a half took. Outing to SteinMart with mom. An hour in the driveway with my friends and their neighbors. My hydrotherapy treatment, and hour of relaxation. These are the moments this week I hold on to, gripping to the moments where I feel "well enough", the fear of the unknown like a shadow lurking around the corner. So when I was on the phone listening to my best friend and her "stress" about picking up her daughter from soccer, exhausted from working non stop, who to disperse Brewer playoff tickets to, etc...etc...I had to fight not to yell and scream, I would love those stresses, I would love to participate fully in life again, and I know better, I know that is never fair to compare. But somedays, I just want to know, will I really ever get better, will I get to stress about the fixable, or am I back in bed, ruminating on what maybe I should try next, who to see next, who has the answers, and please, let me just not get worse.
I'm afraid today. And I hate being afraid, its a fear deep in my cells, and I'm tired of just trying to get to tomorrow. It often feels like a cruel joke, all the blessings I have in front of me, yet can't seem to grasp. I often then feel like a failure, maybe someone else in this circumstance would have figured it out, look at all that people accomplish with far worse ailments, Steve Jobs, Stephen Hawking, maybe I should change my name to Steve. I know what I would all being doing in good health, how to I get to that level of success I feel I demand from myself in this new state? That is what I will work on, acceptance, I had spent so much energy denying these circumstances, I haven't fully figured out how to live within their constraints.
So to all of you at the playoff game this afternoon, I am sorry that I am a bit crabby towards your good fortune, baseball seems to epitomize enjoying the simple pleasures in life. Who else signs up to spectate at a game with no end time...so for all you true lovers of the game, I am not angry or crabby at you, I am envious of you. A simple day at the ball park, eating a brat, enjoying the sun, having a beer, the patience to get there and not know when the final pitch will be thrown. I embrace you and hope next year I can find a way to be you.