Hey People,
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.
I hope you’re all well…
Treya : )
Patience...something I need to remember too on this journey. Sorry to hear of your setback...it seems this illness and its symptoms have us moving in and out of activity levels, symptoms levels, and more all the time. Like I call it ~ a delicate dance of disease....
ReplyDeleteTreya, I totally "get" that need for patience. I don't have it either. I want to do big things even in a sick body. I don't know how we make ourselves feel better about this? How do we find some kind of ballance and fullfilment within the limits?
ReplyDeleteHey Renee,
ReplyDeleteI really like your phrase: "A delicate dance of disease". A beautiful and graceful way of looking at it!
Hey Upnorth,
ReplyDeleteI know its a pain in the ass! I think I need to take a big reality check, and except my limits. I think the problem lies in the fact that we hope for the possibility of getting better, yet we are living with illness everyday. It's trying to find a balanced frame of mind: Excepting your life, yet not loosing hope of getting better. It seems like a contradiction, and this seems to be the problem....
I've had a recent similar experience where I got good news with improved test results and then just a few weeks later I'm having a movement disorder that set me way way back. It can be really had to find that balance. For me I've found that not getting attached to any thing is helpful. The only thing that I no for sure is that nothing stays the same, especially with this illness. I try not to get to attached to feeling great or too bummed about felling funky. My husband often says act like a screen door and let the experience pass right through you. Notice it and let it pass. Focusing on something that brings you inner hoy without causing exhaustion helps me too. Maybe there is a hobby or activity you can sink yourself into that will bring you enjoyment.
ReplyDeleteHave fun with planning your wedding and I hope that you have some good days soon.