Desensitizing the pain
My previous experience with severe pain were my gallbladder stone attacks. The come out of the blue and literally take my breath away. Definitely not fun. The pain with GBS is on a whole different level. The slightest touch and it’s agony.
Getting a sponge bed bath - it felt electrifying! When they cleaned my fingers and toes especially - the pins and needles were so painful. And you get bathed twice a day so wasn’t a day I wasn’t feeling pain. They use a scale of 1 to 10, and 10 was most painful - I was ranging between 7 to 10 during my days in ICU.
Then came the dreaded Tilt Table. You lie flat strapped to a table and then your physiotherapist begins to tilt you upwards to having you stand. I was one big cry baby when it came to do this exercise. The pain that would make me stop was not my lower back or hips - it was my feet. That pain was definitely a 10. My physiotherapist Maureen was a wonderful Scottish lady and to make me smile she would sing a line or two of a Christmas carol. She and her team was such an encouragement in my journey.
To help with my recovery to my lungs, I was transferred from my ICU bed (and tubes and all) to a Laz-Boy like recliner every day even though it might only be an hour or two. What a painful process that was. Remember I am hooked up with tubes and I was trached too. They would roll me to my left side first, clean me for the day, then tuck the sling underneath, roll me on my back then roll again turning to my right pull part of the sling out from under me. Now the process of using a lift to swing to the chair. Of ourse, repeat the process when transferring back to bed. This daily exercise was emotionally (lots of daily tears) and physically (totally drained me).
There by my side through all my pain-full days was my mom (best mom ever!) Ready with Kleenex, cream for massaging the pain away (especially my calf’s and feet) and those things mom do best - rubbing your forehead with loving words of encouragement. We started playing music like Adele, Josh Grobin and The Tenors in the background to provide a sense of calming. We had music playing before going to bed each night when I was in ICU.
It was when I arrived at Foothills Rehabilitation floor, I learned two more tools to help with the pain - music therapy and yoga breathing. The last tool - amazing. When I was I was told I was going to yoga breathing, I was thinking “Well this should be interesting as I can’t move my limbs”; as I am thinking of the traditional yoga positions. What it is like is yoga meditation - use breathing to take away or at least minimize the pain through breathing. It has been so beneficial in learning.
To present day (January 13, 2018) - the numbness, pins and needles is a part of my daily life now. I have to accept it and learning to live with when is now tolerable and don’t have to take opioids to help with the pain.Still get electrified when I am bathe (bed or in the shower) on my hands and feet, again accepting it will happen so learning to ignore it. Being transferred from my bed to the chair and back again, there is no more tears due to the pain.
Through this experience I am learning so much about my body; being more connected of how everything works and symptoms to go with it. Not easy for sure - to live a happy life post-GBS, one must learn to desensitize yourself from the pain you are constantly in, so you don’t miss those precious moments.
Getting a sponge bed bath - it felt electrifying! When they cleaned my fingers and toes especially - the pins and needles were so painful. And you get bathed twice a day so wasn’t a day I wasn’t feeling pain. They use a scale of 1 to 10, and 10 was most painful - I was ranging between 7 to 10 during my days in ICU.
Then came the dreaded Tilt Table. You lie flat strapped to a table and then your physiotherapist begins to tilt you upwards to having you stand. I was one big cry baby when it came to do this exercise. The pain that would make me stop was not my lower back or hips - it was my feet. That pain was definitely a 10. My physiotherapist Maureen was a wonderful Scottish lady and to make me smile she would sing a line or two of a Christmas carol. She and her team was such an encouragement in my journey.
To help with my recovery to my lungs, I was transferred from my ICU bed (and tubes and all) to a Laz-Boy like recliner every day even though it might only be an hour or two. What a painful process that was. Remember I am hooked up with tubes and I was trached too. They would roll me to my left side first, clean me for the day, then tuck the sling underneath, roll me on my back then roll again turning to my right pull part of the sling out from under me. Now the process of using a lift to swing to the chair. Of ourse, repeat the process when transferring back to bed. This daily exercise was emotionally (lots of daily tears) and physically (totally drained me).
There by my side through all my pain-full days was my mom (best mom ever!) Ready with Kleenex, cream for massaging the pain away (especially my calf’s and feet) and those things mom do best - rubbing your forehead with loving words of encouragement. We started playing music like Adele, Josh Grobin and The Tenors in the background to provide a sense of calming. We had music playing before going to bed each night when I was in ICU.
It was when I arrived at Foothills Rehabilitation floor, I learned two more tools to help with the pain - music therapy and yoga breathing. The last tool - amazing. When I was I was told I was going to yoga breathing, I was thinking “Well this should be interesting as I can’t move my limbs”; as I am thinking of the traditional yoga positions. What it is like is yoga meditation - use breathing to take away or at least minimize the pain through breathing. It has been so beneficial in learning.
To present day (January 13, 2018) - the numbness, pins and needles is a part of my daily life now. I have to accept it and learning to live with when is now tolerable and don’t have to take opioids to help with the pain.Still get electrified when I am bathe (bed or in the shower) on my hands and feet, again accepting it will happen so learning to ignore it. Being transferred from my bed to the chair and back again, there is no more tears due to the pain.
Through this experience I am learning so much about my body; being more connected of how everything works and symptoms to go with it. Not easy for sure - to live a happy life post-GBS, one must learn to desensitize yourself from the pain you are constantly in, so you don’t miss those precious moments.
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