My body works perfectly, well it should. I do not know for sure since I have not used it for twenty years now. Anyway, it works. It is just impossible for me to put it to work.
As the effect of the stroke, my brainstem or lower brain is almost completely nonfunctional. Think of it as an electric circuit, the stroke caused a short circuit, and now all the wires are fried.
Therapy for me is not to get better (there is no cure or treatment) it is just to help me to stay physically healthy. Of course, I try my best every time to get this body to better condition because it helps my everyday life but getting better is not the goal of my life.
Contrary to beliefs, I am not sick physically. Effects of being paralyzed do cause me some physical problems. I have a healthy body that works well. My organs are working fine, my muscles, my limbs, my joints. Yet, the situation that I am in makes it that in a way it causes me pain and at the same time does harm to my body.
The muscles of my limbs are almost never relaxed. While I am sitting in my chair, they are somehow relaxed but they can act up (involuntarily) at any moment. My legs stretch out. My arms cramp up. My fingers curl making my hand into a fist with such power that my nails penetrate the palm of my hand. Therefore, I decided that I had better give up long nails.
As an effect of the spasticity (muscles being stiff) of my feet, I even had to have an operation to my normally flexed feet. Meaning my foot were constantly in a tiptoe position like a ballerina. I had an operation on my right ankle just a couple months after the stroke. The left one was done a couple years ago. In the operation, they cut open the back of my ankle and stretched the tense to get it longer. Women tend to get this condition by always wearing high heels.
I find it very interesting how a body can change so drastically in such a short period. Just imagine what your brain is capable of if on one day it can just say to muscles that let´s make her life little more challenging so keep muscles always tense. Unbelievable really.
My bodies’ worst enemy is cold. The cold makes my body hurt and act up. It is not real pain, but still very uncomfortable. It puts so much stress on my muscles that my spine twists. I´m afraid how bad my spine is after so many years! I have noticed a major change in the spine this summer (it has been a very cold summer). Therapists recommended me to wear a corset regularly after noticing changes in my spine. I do this occasionally but probably not as much as I should.
The only real pain that I sometimes feel is a pain in my hip. That I got several years ago from riding therapy what I, unfortunately, had to stop because of the pain.
I have tried much different kind of therapies. None of which leads to a long-term solution.
Therapies I have now is just the basic ones. Physiotherapy twice a week at home. Mostly it is just stretching. This is extremely important to keep flexibility in my limbs. Otherwise, the way limbs keep crimping in and getting smaller, and soon it would be impossible to lift even my arm to wash.
I also have pool therapy twice a week. Swimming is my only moving therapy and the only way for me to burn calories so I make the most out of it. I recommend swimming to everybody whether you have physical issues or not. It is a great form of therapy or exercise no matter the health, age and weight.
My swimming therapy is a full hour. Once a week I also have standing therapy for forty-five minutes what is done with a standing support. Standing upright is good for my blood circulation, bones, and more. I should stand every day in it, but I do not have time for this (regular things take more time to do in a situation like mine).
Between those therapies, I should also have time for my normal life! What is the use of having it if you are not living it? I have swimming therapy and physiotherapy always on the same day so I get a little time for my life.
According to doctors, I am a weird case, and I do not function, as I should. I will never fully recover, not even a little bit, but I am doing much better than what the doctors had predicted. It is very normal that stroke recovery patients often after the progress take one or two steps back. I am very proud to say that I have never regressed.