Living with CMT, Day 14924
I am good at finding the positive. These foxtails grow beside my driveway. They struck me as beautiful this morning. Their feathery tufts danced in the smallest breeze. If my life were an ocean, the deep currents would be appreciation for daily gifts, a sense of wonder, and acceptance. These themes thread through my days and posts with steady consistency.
However, we all get caught in rough seas. We all have choppy-white-water days. My days are becoming weeks. Months. Life with CMT. Argh.
I know why this month is another charged challenge. End of the school year, changes with teaching, my book release (yay! but also busy), summer plans... I have a thousand good reasons for the aches and fatigue. But I also am annoyed. I can't help but feel that CMT is dragging me down into the depths. I see my friends and family managing so much more. I see others go grocery shopping and cook dinner all in the same day without big consequences the next day...
I need to share my latest frustrations. Just to say them might give them less power.
So- I am frustrated with the new little caps on water bottles that are too tiny... I love saving the earth, less plastic is great, but I cannot open them for the life of me! If we bring water, I need to remember to open it before we leave the house with my opener-tool. Otherwise, forget it. And, yes, we use reusable water as often as possible, but those water-bottles are heavy to carry. Which is another frustration
No more stroller. The kids have outgrown the stroller. Eek! And I'm happy for them. But the stroller was my carry-all and buffer in crowds. Now my camera feels very heavy!
Which leads to my unsteady hands with photography. I take lots of blurry photos. For each one I post, another 2-5 are deleted. When I want a nature image, like a rose, it's driving me crazy trying to keep my hands still. Children move, which is always a challenge, but that's okay. I understand that. But when it counts, when they actually are still for a second and I cannot get a clear image, I get so frustrated. Makes me put the camera down...
This photo took many attempts and I finally braced the camera on my knees as I sat of a chair to keep the trees from blurring.
I feel so whiny, but that's another frustration. The frustrations get old. Even to me. Another day of fussing? Another day of feeling sidelined? Another day of minimal cleaning? Another day of dreaming instead of doing?
Ack! My hands are flared up from lots of sewing. All great work, but still makes my hands tingle, go numb and fumble. I broke my coffee-pot knocking it against the counter when I was going for the sink... I hear that's not too unusual though. Still, if I counted how many things that I dropped in a day :)
Anyway, the list can go on and on... I'm frustrated with having to schedule all the doctor appointments and physical therapy. I'm frustrated that healing from last summer's injury is taking forever. I'm frustrated that I have pain each and every day. I'm frustrated that all the things that I enjoy (photography, adventures, crafting) are aggravating symptoms. I am frustrated that I have to phase out of teaching. I am frustrated that I would rather go to sleep than play games with my kids. I am frustrated.
Every day I try to outwit this disease. Every day I tweak my schedule, adjust my expectations, and adapt to my circumstances. Every day I rise up rather than sink to the depths. But it's hard some days.
I need to write. I need to get these emotions out because they are knotting me up. I don't want to worry my friends and family. I don't know how to fix this. If I could, I would. I think that I get ahead, so I strive for 'normal' only to flare up symptoms again. I love my PT and she is giving me the hard truths again. She sees that I do more the minute that I feel a little better. I have an ambitious life, reaching for big dreams, holding big ideals, and I don't factor my neuropathy into that life enough.
I feel like I should be able to do these things- teach part time, craft, and raise my children well. And yet... Yet, lately, I can't.
That's hard to admit. I say that CMT is a dance, but, lately, it's a battle. And CMT is winning. Which breaks my heart.
Sorry, this got far deeper than I thought I would go... I just knew that I had to write. Now I need to walk away from the computer for a little while.
Thank you for listening (reading). I will be okay. Really. I always am. Change is change. I will find the sunshine. I will see opportunities in the new horizons. I will ride out these stormy seas. I will find calm waters. I believe :)