As many of you know I use quotes to help me get through. Almost every necklace, bracelet, coffee cup, screensaver or internal motto comes from a quote and has special meaning.
This time I'm focusing on the tunnel. I know this is a long tunnel. We knew before it started that it would be. But, that doesn't change the fact that one day I do feel like there's a light at the end of the tunnel and the next day I realize it was actually a freight train.
This time I'm focusing on the tunnel. I know this is a long tunnel. We knew before it started that it would be. But, that doesn't change the fact that one day I do feel like there's a light at the end of the tunnel and the next day I realize it was actually a freight train.
So, what's going on as of Feb 20, 2017?
I began outpatient rehab for the neuromuscular issues, as well as further rehab for my gait and balance. Currently, I cannot walk straight (think toddler-esque) and cannot close my eyes while standing or walking. If I do, I will either begin to fall over or run into a wall. Feel free to giggle. It's quite funny to watch.
It's not like vertigo or dizziness, although some of the Neuro exercises do make me dizzy when I do them. It's not the inner ear causing this imbalance (which is what causes vertigo or most cases of dizziness), it is the confusion between my brain and my muscles, so if my brain doesn't have visual confirmation of the way I'm moving it doesn't know what to tell my muscles to do. So, eyes closed= muscles that are working my legs getting confused and causing me to veer off into a wall or just fall to the side.
It's not like vertigo or dizziness, although some of the Neuro exercises do make me dizzy when I do them. It's not the inner ear causing this imbalance (which is what causes vertigo or most cases of dizziness), it is the confusion between my brain and my muscles, so if my brain doesn't have visual confirmation of the way I'm moving it doesn't know what to tell my muscles to do. So, eyes closed= muscles that are working my legs getting confused and causing me to veer off into a wall or just fall to the side.
So, this is outpatient rehab's main focus.
The other main focus is strengthening my muscles and retraining them to walk correctly- to simply walk down a hallway taking normal size steps, feet forward, one in front of the other. Believe it or not, I can't do that. Seven years of pain has taught my brain to change things up so that when I move the pain is lessened, but the way it told me to move is incorrect and causes pain in other areas. We need to work on the brain to tell them the right thing, but also the muscles to function in that way. Doesn't do any good if we get the brain saying the right thing to the muscles and the muscles saying "ummm no thanks, we like doing it our way."
The other main focus is strengthening my muscles and retraining them to walk correctly- to simply walk down a hallway taking normal size steps, feet forward, one in front of the other. Believe it or not, I can't do that. Seven years of pain has taught my brain to change things up so that when I move the pain is lessened, but the way it told me to move is incorrect and causes pain in other areas. We need to work on the brain to tell them the right thing, but also the muscles to function in that way. Doesn't do any good if we get the brain saying the right thing to the muscles and the muscles saying "ummm no thanks, we like doing it our way."
The first day in outpatient rehab was incredibly painful and landed me in bed the rest of that day and some of the next. For those of you who have never done any sort of PT or rehab, the first day is mostly trying to recreate your worst pain so the PT can see exactly what's going on so they know how to fix it. It's a lot of "does this hurt?" And you saying "yes!!". Since then I've been able to do the stretching exercises he assigned, but the strengthening and Neuro exercises are a bit more challenging due to pain. He said through email that we will work on that next week when I go in again. Meanwhile, I still do as much as I can of the strengthening exercises I have been doing.
It's all very complicated medically, but what it means in every day practical life is that I still need a roller walker or wheelchair when going out and walking very far, and there are still many days where simply getting out of bed is challenging and painful. Taking care of a 50lb three year also makes daily life challenging.
Now, the pain is never going to be gone. This is my normal. I have an autoimmune disease that causes pain and immobility. There will be days I cannot get out of bed for the rest of my life. But we CAN get my body to function as well as it can with as minimal amount of pain as we can get to. That's the goal. And we're getting there. It's just a really long tunnel.
Now, the pain is never going to be gone. This is my normal. I have an autoimmune disease that causes pain and immobility. There will be days I cannot get out of bed for the rest of my life. But we CAN get my body to function as well as it can with as minimal amount of pain as we can get to. That's the goal. And we're getting there. It's just a really long tunnel.
❤❤❤
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