This question came into play this last week. My insurance company has assigned me a nurse who calls about once a month and "checks up" on me. It's sort of funny because instead of the nurse helping me, it usually seems like I'm educating the nurse about MS, and the reasons for tests I've had or treatments I've had. But I understand the insurance's desire to keep in touch with their more "elite", i.e. higher cost, clients.
So at the end of each phone conversation she usually asks me what I consider to be a rather inane question: "What are you going to do between now and the next time we speak to make your "situation" better?" I usually answer I'm doing everything I know to do, and I'm going to keep on keeping on.
So this go, she must have decided not to ask the same question but instead asked, "How would you rate your quality of life?"
And that's where we ran into a bit of a discussion. It boiled down to this, I rate my quality of life very normal to good (but that's because I'm using "my normal" as the parameter.) She knows my issues and disagreed that I should be rating my QOL on my own scale. She defines QOL as what a "muggle", non MSer, would experience. And based on that scale I should rate my QOL.
I totally disagreed because I believe it's a subjective definition. And I don't
include certain activities that are long gone from my ability to ever achieve, in my QOL scale. For instance, I loved to go to outdoors craft shows, and the fair, etc. But due to Florida weather, and my reaction to heat as well as sensory overload experiences in crowds...fairs and outdoor craft shows are completely off my radar, and I would never consider not going to them as diminishing my QOL. I will not include the ability to go to places I once liked to visit on my rating scale.
So does that make any sense to anyone else? What does Quality of Life mean to you?
So at the end of each phone conversation she usually asks me what I consider to be a rather inane question: "What are you going to do between now and the next time we speak to make your "situation" better?" I usually answer I'm doing everything I know to do, and I'm going to keep on keeping on.
So this go, she must have decided not to ask the same question but instead asked, "How would you rate your quality of life?"
And that's where we ran into a bit of a discussion. It boiled down to this, I rate my quality of life very normal to good (but that's because I'm using "my normal" as the parameter.) She knows my issues and disagreed that I should be rating my QOL on my own scale. She defines QOL as what a "muggle", non MSer, would experience. And based on that scale I should rate my QOL.
I totally disagreed because I believe it's a subjective definition. And I don't
include certain activities that are long gone from my ability to ever achieve, in my QOL scale. For instance, I loved to go to outdoors craft shows, and the fair, etc. But due to Florida weather, and my reaction to heat as well as sensory overload experiences in crowds...fairs and outdoor craft shows are completely off my radar, and I would never consider not going to them as diminishing my QOL. I will not include the ability to go to places I once liked to visit on my rating scale.
So does that make any sense to anyone else? What does Quality of Life mean to you?
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