These legs.


I looked at them. I tried to will them to work. They have been amazingly resilient and strong, pushing through pain and atrophy. Pain and muscle spasms are one thing. Weakness is a completely different aspect of this. In the last year I am fortunate this has only happened a hand full of times. When I was first diagnosed it was much more frequent. There is no correlation to food, exertion, rest, stress, nothing. I am moving along one moment and the next moment my legs decide they cannot move. Fortunately I had just peed or I would have had to wake my husband to carry me to the bathroom. Fear and panic makes it worse so I try to just let them be and know that in a few hours they will work again. It is one of the scariest parts of this disease though. When my legs just stop working alltogether. I sit here and think of how blessed I am that they have carried me as far as they have. They allow me to walk out a few steps to visit the owls. They allow me to walk to the kitchen. In the last few months they’ve even allowed me to drive the car. I push through the pain. I know that their days may be limited and so I appreciate all that I can do. When this happens though I have to take a moment to truly embrace my abilities. I have to be truly grateful for the things that these diseased legs are still allowing me to do. After 2 hours, like clockwork, they started to work again. They felt like they were connected to my body and I could move them. But then the pain set in. The pain that comes after my legs stop working then restart is excruciating. Not like the day to day pain. This pain is different. It feels like a thousand bees are right under the skin stinging. It feels like there is a tearing deep inside the muscle like something is just barreling through and ripping its way past each muscle tissue up and down my legs. I have given in to the fact that there is no how or why or what that causes this severe leg weakness. A doctor in England has offered to study a new found gene associated with a similar muscle disease called Periodic paralysis. Hopefully an answer will one day be found. I have waited 12 years. I will keep waiting. Keep praying these legs keep carrying me as little or as much as they can for a day. I am grateful they are working at all given the degree of atrophy and the hollowness of the bones beneath the muscle. They are a real miracle…these legs. 

25 thoughts on “These legs.

      • it is strange how many things in our lives are similar. I watch how you deal with these things and I admire how you respond. I like you don’t let it beat you. I love how you can be so caring and accepting despite the harm done to you and the pain and failure of your body today. You really are an inspiration for those struggling with a disability or with childhood abuse. I would love to see you give talks at schools. Hugs

        Liked by 1 person

      • Thank you for that. I do believe you and I have a lot in common. I see the same compassion and love in you, that you can give, nomatter what you are going through and I admire that

        Liked by 1 person

  1. I’m so sorry this happens to you! I would totally panic, but you just take it in stride and list out the positives. What an amazing attitude and example. Very inspiring. I hope the “next episode” never happens.

    Like

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