I have done great posting all about what we are doing these days. We are having adventures again! I hobble around a lot better. I can wear my regular shoes. I use one crutch most of the time. I am met with, "Look at you! So much better!" And I smile and agree. Even though I wince as I put weight on my foot. So much better. Because I might cry if I talk about how far away I feel from better.
My break down/melt down today was at Physical Therapy when she asked about long term care for my ankle. It's been over three months now. I still have swelling. And pain. As she asked, I almost fell apart because I don't feel like I have a doctor that genuinely cares about me, or this injury. The specialist in Sacramento is busy with many patients. The local doctor knew I needed a specialist- he wasn't sure how to best treat this injury complicated by CMT. And my neurologist isn't a bone specialist. I feel quite alone on this journey. And it's hard to know what to do. Should I be more concerned? Should I be demanding appointments and scans? Everyone says bone injuries take a long time to heal.
And my latest problems are CMT frustrations. Just as I predicted/feared, the tendons have shrunk so that my heal won't touch the ground anymore. This means the ball of my foot, under my toes, carries most of my weight. Now the nerves in that area are flaring up because they don't like toe-walking day after day. So each step is increasingly painful through the day. I stretch and stretch but I barely notice a difference. My big worry is that, what is this lasts forever? What if I need corrective surgery? What if this is bad, bad, bad?
One of the things that CMT robs from you is trust. A deep trust that most people take for granted. A trust that you can get better. Because, with CMT, certain things never get better. My arthritis, my numb fingers, my fatigue... All here to stay. So, even though I feel fairly certain that I can get back on track, I can stretch back to my old self, part of me wonders....
Then I back-pedal big time and say one day at a time, one challenge at a time, one moment at a time. And that's how I go to the pumpkin patch and the apple orchards and enjoy the day with my children. Ian has learned to hold my pinky as I hold onto the crutch.So there are really two stories in my day- the things I do, and the way I feel. And lately, I haven't been feeling great. I feel so frustrated. I guess I will call the specialist, but I'm not sure what he could do... I don't want to drive over an hour for a fifteen minute consult where we decide it needs more time. Which is probably what it needs. CMT slows my healing to a snail-crawl. Ha, ha.
Deep breaths. Slow down. Smile. I am getting out and about more. I am getting to do the things I love with people I love.
Oh, I forgot to mention that the cold weather arrived. Chilly winds, heavy rain, and dark clouds. I am pulling out sweaters and thick socks, big jackets and knit hats. And I change inside me, too. I felt that undertow yesterday, when I could barely keep my eyes open in the late afternoon. Cold makes the fatigue big and heavy. Cold makes the pain spike. Cold is not my friend anymore.
Yet, with our financial troubles, I keep the heat as the lowest possible setting. I curl under electric blankets. I wear my thick fleece robe over fleece pajamas.
I get sick of the struggle. I really get tired of carrying all of these bent and broken puzzle pieces. I told my physical therapist that CMT is a puzzle where the pieces change every day. Sometimes they change in an hour. You think you have the solutions, then everything falls apart... And you have to start all over again.
I didn't mean for this post to get so swampy. I'm just in the swamp, so thank you for letting me vent. I can disassociate from a lot of my CMT experiences. Since they are my "normal", I don't like wasting energy by fussing or complaining. But I want this story to be authentic, to peek behind the curtain of the cool stuff and fancy adventures. To share my journey with CMT. Thank you for listening!