I'm Tired

I'M TIRED!!!

Not just as in "I need a nap" (but I think that I do.) I'm tired of all of it. I'm tired of looking up my symptoms online trying frantically to find some kind of answer for what's happening and why. "Progressive neuropathy, hand weakness, post INH treatment" is a common one. I look up peer reviewed journals, personal blogs, National Health Institute information. And trust me, I'm no hypochondriac. Quite the opposite. I "fake well" all the time. 

I do these things because knowing the name of your enemy is important. Why do you think names were always such a big magical deal in the stories we heard as children? If you know the name of your enemy, what it's after, what the plan is, then you can form your own plan and attack. To have no idea what it is that's happening to you, what's attacking you, is like fighting against mist. You just end up tired. 

Although I'm trying everything I can think of to help myself I'm still fighting against mist. I keep hoping for that one article or study that will suddenly bring it all into focus. But more and more I have to ask myself what I'm going to do if that doesn't happen?

I recently started a new job. It's a career that I've worked very hard for and it feels amazing to finally be here, earning money doing what I love. I'm lucky to be in a situation where I had the opportunity and means to figure out what my passion was and then chase that dream till it was mine. But I'm also a bit scared.

I'm scared that my body won't be "on board" with me working 40 hours a week. That I'll be too exhausted for anything other than work every day. That my weekends will be 100% recovery time. I'm worried "the mist" will try and take over what I love to do. 

I'm fortunate that I have a very flexible job and I'm in charge of my own schedule. That gives me a lot of options not open to many people in similar situations. But that fear in the back of my mind says "What if it just keeps getting worse? What if I just keep on declining and there's no magic 'thing' that puts me back together again?" 

My husband is fantastic (as I already shared) and doesn't hesitate to pick up the slack. He's also wonderful at reminding me of all the tools at my disposal. Like "speech to text" on my iPad if typing gets too hard. Or that I can just go to bed after work if I need to. We meal plan and shop together. I love to garden (when I can) and he's taken over almost all of the weeding duties for me. So it's very helpful having him to remind me of my options, hold my "paw" and tell me what a big brave fighter I am and that I can do anything I put my mind to. Even working 40 hours a week. Even (hopefully) finding some answers soon.

And now I wait for my new neurologist to call me to schedule an appointment and the results of my hand MRI. Waiting also makes me tired.