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Do you ever feel not in control with SMA?
Maybe it’s just me, but sometimes I feel as though I’m no longer in control of my health. No matter what I do or how I try to help myself, my body just has a mind of its own. It’s frustrating. I don’t know why I have this need for control, but if I were to guess, it makes me feel safer and more at ease. Not having that security increases my anxiety.
Do you ever feel this way too? I don’t always feel this way, but when I do, it’s hard to quiet the emotions down. How do you manage these feelings?
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4 Replies
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Yes, it can be very frustrating. Just yesterday I was trying to make a phone call and my fingers were cold so wouldn’t cooperate. It was one of those calls where you have to select menu options. If you take too long you have to start over. I had to start over 4 times. All of that to find out indeed my debit card was compromised so I’ll be needing to make more calls. Yay! Now my dilemma, do I leave my ac off so I can make the calls? My caregivers won’t appreciate that when they walk into a sauna.
As far as needing control over your health, have you always felt that way? I think mine stems from past mistakes. Brianna wrote about it if I recall correctly. Something to the effect of how we carry trauma with us. If I can do all the right things and avoid mistakes made in the past maybe I’ll have a better outcome. It’s even more frustrating though when you do all the right things and it still goes awry.
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I haven’t always felt this way. But with every health issue that compiles, the more I start to feel like I lose that sense of control. I’ll have to find Brie’s column!
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Hi Alyssa, I’ve often felt like I had no control over my body. As a young girl I wondered why my legs didn’t obey me when I tried to climb stairs without pulling on the handrails, when I tried to run or just keep up with everyone while walking. After my diagnosis I understood why I didn’t have complete control and accepted it but I never got over the falls. No matter how careful I was, falling was inevitable. Now that I’m older, the falls have begun to cause great damage. I’ve had serious fractures that led to surgeries and the knowledge that it most likely will happen again is disheartening. I try to tell myself it’s the last time but I know I have no control.
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I’m sorry to hear that Lisanne. I’m sure that can be frustrating at times. Do you use any walking aids to help support you and keep you from falling?
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