So yesterday I wrote a post about visiting LCLH and wrote in detail the treatment plan etc. I found it easier to write the facts in that moment in order to process and assess how the appointment went.
It has now been a couple of days since and both my father and myself ( and mother and husband) have all been processing how this appointment went. I am trying to process how I feel to know that all being well, I will soon be fitted with FES equipment and may actually start to walk "normally".
The word "normal" when connected to disability is a contentious word. My normal may not be your normal. My normal is walking with a bend in my knees, my bum sticking out and my shoulders hunched forwards. My body is constantly in spasm when I walk and so the amount of energy I need to use is approximately 3-5 times more than the average able bodied person. However the FES will hopefully train my brain and my muscles to work "properly" resulting in less pain and the ability to walk.
I grew up feeling like I was a lazy person because I would always choose rest when I could, the slightest task after a heavy day of activity, walking or thinking would cause me to just want to sleep. At first it was classed as just normal teen sleepiness and then it was always associated with not being fit enough and so I grew with the mindset of its my fault that I am tired, I need to physically push myself further in order to be able to continue. And this mindset served me well for a very long time. Then I had my girls and realised that with running around after them, their clubs and their playdates etc and late bedtimes, by the end of the day I am truly exhausted.
The emotional toll of all of this has over the past 8/9 years has caused me to re evaluate my life and also evaluate my moods. I have been offered counselling and taken it with both hands. It is important to start regulating my moods and my emotions and I need to work on my mental health alongside my physical health.
Monday saw me expecting the bare minimum, expecting to come away disappointed however for the first time I came away feeling like I was valid. That my feelings and how I am are valid and someone who deserves to be taken care of and that my quality of life is just as important.
I always thought of my disability as being secondary to me. A seperate aspect to who I was.
It is , as I have said before something that I have had to address and identify with in the past few years as my needs and abilities have changed. However I am determined to stave off any further secondary conditions for as long as I can. As I wrote in my post yesterday, my anxiety at being out and about alone or with just my girls is something I may never get a handle on. I will never NOT have cerebral palsy and as much as we all would love to keep aging at bay I am getting older and it will impact my life in one way or another.
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