Anyway, the past couple of weeks have been rough to say the least. I felt wonderful after my last infusion for a few days and was quite certain it was the Tysabri working its magic. I still think it could have been the last infusion because quite honestly the 40MG dosage of Prednisone hasn't been working the way it did before the last time I tried to taper. So either my disease is getting worse, which I doubt, or I was in fact feeling some benefits from the infusion.
Basically, I've been waking up day to day not knowing how the heck I'm going to feel. I usually take it easy in the morning hours while I get a grasp on how my disease is going to behave today. Even if I feel crappy in the morning, for some reason I am always given the 5pm-12am window of relief. And I gladly take advantage.
The positives of the past two weeks are that I have gotten back to exercising. Understandably I am not quite back to my usual routine of running miles and miles outside to nowhere in particular, but rather I've been trying to walk as much as possible on the treadmill. The problem is that I have absolutely ZERO energy and I am convinced that as long as I take Ambien, I will never truly be awake. I try to only take it when I absolutely need it but this is most of the time. When I wake up in the morning I have that Ambien fog in which I don't want to sleep all day but actually making it out of bed is very difficult.
As much as I hate Prednisone, I'd rather have the euphoria usually associated with this medication than the constant fatigue I experience when I'm trying to taper. And I'll be honest, the second I feel good, I give myself a few days and then I try to decrease my dosage by 5MG because quite frankly, I don't want to be on it for longer than I have to.
At the same time, succumbing to running on the treadmill infuriates me as a runner. It's certainly not the most ideal situation and I don't get the same effects. But I need to resign to the fact that it's something and I'll take that over nothing. There's just something about running in one place and being stuck inside that stifles my soul and only reminds me that I am far too sick still to be running outside with the rest of them.
And so that is my conundrum at this juncture in my life. I am far from healthy, but far from being sick. I am stuck in this middle ground. If you asked me a year ago if my situation right now would make me happy, I would have told you yes. I would have thought that being able to walk and run and be a part of my friends lives again would be the greatest thing in the world. But eventually, like anything in life, we all want more. Suddenly it's no longer sufficient enough to merely be passing through life, living and breathing, because now I want to participate in life the way I could before. And right now, I can't. I need more consistency in the improvement of my symptoms.
I want to be the better version of myself that has been lurking under the cloud of Crohn's for so long. I miss the randomness with my friends, not planning anything out, just flying by the seat of our pants. These days, I need to have much mapped out for me to feel comfortable doing anything. And if I'm not comfortable, my friends aren't. And I never want to compromise anyone else's good time at the sake of my own problems. I know I just need to appreciate what I can do right now but it's hard because what I can be is only one small percentage of what I am.
And yet every day when I walk on the treadmill I can't help but be bitter and feel stifled at what this disease has done to me. There I am, in my sisters basement, only in control of how fast or sharp of an incline I walk on. I don't control what is around me; a world moving on while I am merely replacing one foot step for another in the same exact spot I placed it in my previous stride. I am inside and everyone else is working, making plans, living life, and figuring shit out in the process...
At least when I ran outside I felt like I was going somewhere, even if that somewhere meant I would return home in an hour. But there was always the chance that I would be inspired to run off my usual path and take a longer, sharper route home. I want that option even if I don't utilize it.
I want to make mistakes. I want to fall down. I want to have the option of taking a more difficult path in my journey. But there's not much falling down you can do when something totally out of your control dictates how you are going to feel every day. I can only control how I respond. And right now I am choosing to get on that treadmill every damn day as long as God gives me the energy to do so.
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