Thursday, August 4, 2011

Frustrated with zero spoons

I did so much this week (although nothing compared to what a normal person would be consider a lot). The result? Thursday has arrived and I now have no spoons..

5 months this has been going on and there seems to be absolutely no rhyme or reason or consistency to what is going on. There seems to be absolutely no predicting or properly managing the exhaustion and pain. It's like I'm running a race with a blindfolded and every single day how far away the finish line is moves. Sometimes it's a foot in front of me. Sometimes it's a few miles away. And it's not like it behaves like a slide rule either. It's fluid. It's jagged and jumps around. It is frustrating because it makes it nearly impossible to plan anything in advance. Even something as simple as a dinner with a friend.

A childhood friend of mine just moved from Oklahoma to Massachusetts. My husband is going to a RC helicopter event near where she's moved to and thinks it would be a great idea if i went to visit her. Normally? It would be. These days? I have absolutely no idea how I'll feel. She's a mother of 3 with a busy job and a busy life. I remember when she lived very close to me, she had two children then and visiting her was exhausting. The kids and household life don't stop because your friend is coming over and most of the time I spent with her was tagging along during her day. Something like that would be impossible for me now.

Granted, now that I have more medications, I no longer worry about simple things like showering or using the bathroom stopping me in my tracks. But I still have absolutely no idea what, day to day, I will be able to handle beyond the basics. I don't know when I'm going to run out of spoons, all I know is that suddenly, I don't have any. And then I also have to worry about the basics like making it to the bathroom once I hit that wall. Which leaves me in a state of fear about leaving the house for fear of being stranded.

Although hitting that wall quickly is probably my own fault. When I feel well, I tend to try to move quickly and get done what I need to get done as fast as possible. If the pain, the exhaustion are indeed creeping up on me, I'm probably not noticing because I'm so engrossed in getting what I'm doing completed before I'm unable to. It's frustrating to feel fine like I did this morning, go to bake some cinnamon rolls and then the minute I set the dough aside to rise? BOOM. Pain started blossoming in my arms and legs. Exhaustion shot through my neck and shoulders and brain like a cannon. You ask yourself... what do I do now? Do I push through knowing you'll end up having to down enough vicoden to make a whale's liver curdle and end up laying on the couch for possibly days? Or do you leave your best mixing bowl outside on the deck with a bunch of yeast dough in it where it will accumulate insects until your husband gets home from work to bring it in and throw it away because it's ruined? Do you leave the flour and dough bits all over the kitchen counter and floor to attract ants?

More often than not, I end up cleaning the mess and finishing what I'm doing and popping pills.

No comments:

Post a Comment