In my sleep I don't dream of my disability, so each time (getting up to the bathroom every two hours, because my bladder can only hold a tiny bit) I have to remind myself of my limitations. I grieve a little each time over this blessed/tragedy, causing anger. It takes me quite a while to wake myself enough to be safe before I attempt to do anything physical, then I have to wind down to fall asleep again. I don't sleep in a regular bed. I gave that up years ago, because I only have one leg and if I try to lay flat, my back bows backwards, like I'm doing a back-bend. This is due to no counterweight and causes excruciating pain. I sleep in a lounge chair, because it cups my body. When I do decide its time to get up, I'm so tired from this fun nightly routine. Suffice it to say I get approximately five hours of sleep a night.
Another thing that is required for me to live alone is having a CNA (Certified Nurse's Aid) come into the home to help me shower and a PA (Personal Assistant) come three times a week to clean (safety, safety, safety). My potential of falling is very big, let alone hurting myself, which could put me in the hospital or worse, the nursing home.
I need help in the shower, because transferring from one spot to another on my own is a struggle, but transferring in a wet shower is dangerous. This upsets me, I feel I have no privacy. Then I remember when I lived in a nursing home (now that's NOT privacy, living in a 9ft-by-8ft room with someone else and having to shower in the same room). Then I think, "I can deal with these few issues as long as I'm home." Besides after a year of showering with the same CNA, it is just a normal part of my life.
I need a PA to clean my house for me, because when I try; I fall, drop things over and over, frustrating myself, making a bigger mess than when I started.
Cleanliness is very important, especially for me, because I can't get around in my wheelchair due to clutter and most important I get sick very easy. My body doesn't really fight infection. When there is a open sore on me, I can get germs in it and become deathly ill in a matter of minutes. Truly! I worry about this constantly, causing depression, anxiety and anger.
While I wait for my CNA and PA, I work on this blog, read, watch TV and sew. I'm always their last patient, 1:00-2:30 pm depending on the day. Most of my day is spent waiting, which doesn't mean I get lots of rest. I'm very lonely and bored most of the time.
I go to the restroom every two hours during the day also. I only have one leg (we'll get to that in later blogs), my balance is not so good because of this. During all of this I have to worry about falling, which makes me very angry.
Repeat daily!
I have to convince myself, I wouldn't have it any other way. That dealing with these hardships makes me who I am, anger and all.
And who if you by being worried can add a single hour to his life?
Matthew 6:27
I am blessed
Merrym Dawn Mathis Bruce
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