New challenges. Or maybe old challenges… Just plain old challenges in general. They seem to come attached to this illness like a piece of chewing gum stuck in ones hair. For anyone to follow this blog they will see a perfect example of the roller coaster ride that is living with an illness such as mine. This is not a moan, its just fact! My last post was about how good I was feeling. Then without my control I was sent a few steps backwards; actually make that miles…
I’m beginning to wonder if my quest to find balance will ever be found… It truly is very difficult to remain on the ground all the time in the same place, nowhere near that sticky-icky chewing gum. There’s no doubt that ones very own nature and personality come into play here. Life is a contradiction of sorts. This illness is a contradiction of sorts. My personality is definitely a contradiction of sorts. That’s a whole lot of contradictions covering the ground.
I find myself constantly coming back to the same questions:
How does one learn to truly listen to ones body and try to live in a world that runs on not listening to ones body??
How does ones hope stay strong when the very things we put in place to strengthen our hope wreck our bodies?
There’s one thing for sure: I have a deep hunger for life. Sometimes my partner says to me that he can’t understand how I keep going and don’t give up. Firstly, I don’t have a choice : ) But really it comes down to that hunger for life and everything in it that have. It’s a fire deep within my soul that will never go out, EVER.
Probably my biggest challenge is trying to deal with the frustration that is born out of daily life living with this illness. I won’t go into it again, but yes I’m talking about my whole ‘achievement’ issue here. To give a quick example: I was enjoying doing my writing course and then I started having bad problems with my arms and using them on the computer. In unison with this my brain started really acting up. Both of these things alone make it very difficult to write and think properly. In fact, I had to totally stop using the computer. Then followed a deterioration with the rest of my body. Then it was back to my boring old bed to just lie around––BORED––waiting for myself to get better.
To be honest, my brain is still not great at all. I’m having a lot of trouble writing this post and sticking to the point. So its going to have to do for now.
So, what is it I'm trying to take away, and learn from this recent fall from grace? Patience! The art of patience… Patience in every aspect of my life and the way I live it. My wedding has to take top priority over everything. I have to keep that at the forefront of my mind.
In my next post I will give a general symptom update and talk about where I’m at with my treatment right now.