This is how I feel most of the time...more often than not. Each segment of my body feels like its own entity. Separate. My body does not feel like a whole person.
This morning stimulated this drawing. Had such a difficult morning. I want to keep this post short, so won't really go into it, but something I could do 5 days ago is suddenly unbelievably difficult. It comes and goes. It frustrates me beyond belief. I feel like I am dragging around a corpse. In those difficult moments I am in pieces in every way.
"I could do this yesterday, what is the problem today?"
Every single limb and joint feels detached. I feel everything that is happening in my body and there is no fluidity. My elbows, neck, shoulders, each finger joint, toe joints and even my butt muscles are getting so much weaker. I feel like everything is aching to die, and 'they' keep asking me, "Why do you fight us? Just let us go."
Sometimes, I want to. Let go.
Since every HIBM patient progresses at different rates, though we all have very similar scenarios and difficulties. I've also realized that we have some unique symptoms. Because of the way we have to compensate and "get creative" with dragging our limbs around just to get through the day, we also form little pains and problems in different areas that are not HIBM related.
My friend, an hibm patient, says her back is curving inward. I am not sure why. MY joints ache so much. I can feel every real estate of my body and it feels like it is crying out to me all day long, whether it is severe weakness, discomfort, tingling, pain, poking, probing, stiffness, soreness, numbness, tightness, extreme weakness...oh, did I already say weakness? Well, that one deserves a few round of applauses.
When those more than usual moments of weakness pop up, so does the question, "Can you do this?" My body asks me. I ask me. When I get into those situations that require everything in me to complete -- whether it is moving my leg a speck to the right with my hand, standing up out of my chair, turning a door knob, taking a single step, but can't--I whimper, I grunt, I plead, I sweat, I clench, I hold my stomach in tight, I pray to anything and everything that will listen, use my "good luck charm sayings", and I draw every piece of strength I have in order to complete a single ant sized task.
And then
AND then
I have to consciously make the decision, a decision that is made several times throughout the day, "Yes, Yes, I can do this" I put together the pieces and move on. That is all we can do. That is all I can do. There are no magical answers and there is no definitive way to handle it.
Don't worry about me, though. I know this illustration is a little more "serious", but I am ok.