DAILY LIVING & MOBILITY

Heading into Hibernation

Cerebral Palsy (CP)

Alex Lytwyn

When the first snowflake falls, this signals my body to start “shutting down”

Not having someone here all the time really causes me to have to plan my day down to the second. Hours can feel like months, while having to put my life on pause. Due to different staffing situations, I feel like an animal, putting on an extra layer of fat before their hibernation.

There are only certain times when I have help.  When I have the opportunity to, I must eat great amount because it will be a long time till help comes back. A diet like this really affects my diet and energy levels, to the point where I get tired and put weight on easily.   

With any hibernation, muscle fatigue begins to set in.  I am in the same position all the time, because I have to prioritize what I need done. Getting to lie down and stretch or stand is not in the cards. With an animal being able to move around during hibernation, strength and endurance come back rather easily once awoken.

Another aspect of me being like an animal is, growing my winter fur. Sitting in my coat really puts me in a real lather during winter days. Yes this is my own choice, but either I sit with my winter apparel on and have the ability to attend my many other obligations such as volunteering, or simply watch my life fall apart before my eyes and loose my mind by being trapped in the house. With most of my meetings being during the supper hour, many times I miss supper.  Going hungry or eating supper late in the evening is something I’ve grown accustomed too.   My hygiene and health suffers because I need my staff to help me get ready to go volunteering instead of helping me with my personal needs.

I have to pee, to bad for me

I cherish the moments when I can use the bathroom. Putting the mind to sleep is a must as my bladder fills. Having this outstanding control is a good thing, because I don’t end up having an accident (most of the time.)  I have no social life because of lack of staffing hours. When going out or to meetings, I should not have to depend on people at the event to take my coat off or take me to the bathroom. At least animals can go where they want, when they want.

Finding practical ways to stay active is of great importance. This is done through my writing a community involvement.  Add to that, I cannot do sit-up’s but can do crunches, while in my chair. I cannot climb a mountain, but can pull myself into a standing position.  

Until I’m able to have staff with me 24/7, my life will always be in “hibernation”. Finding things to open my eyes, will always keep the soul propelling forward.  My body will never be able to be fully active, but the brain is constantly “scavenging” for nutrients & knowledge.

Only being able to truly live for 10.5 hours a day, (having help with me) makes me feel like an animal at the zoo. I get attention for certain parts of the day and then for the rest of the day, I’m held captive by the provincial government.

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