Quality of Life....what's your definition?

[rdmc]

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?

[Dale76]

If I was to compare my life now to what it was prior to MS... Well I really can 't , that person is gone for good and I have to work with who he left behind.

Life is unfair so comparing my life to others will always be depressing & useless!

I guess that is similar to how you feel by the sounds of it.

[Jules A]

I like that you rate your quality of life based on your standards! Good for you.

I plan to do the same thing although I'm hoping my standards become lower as my abilities become less. The things I consider important to my quality of life as now won't hold up if I start having more physical limitations.

[KatieAgain]

RDMC

I don't think I would talk to a Nurse from my Insurance Company. They started doing that to my Mom...she just ignores the phone call now. Insurance Companies are about profit...and their Nurses are really intrusive.

If I absolutely had to answer, I would just say, "I have MS and I have had it a long time. My QoL changes on an hourly basis." That would be the end of the discussion.

BTW...I went to a Craft Fair here in Florida last weekend....Fair Season is starting! Two miserable hours. Heat is not my problem, because I am cold intolerant. But the Sensory Overload...came home and slept for three hours. I would have much better off watching a couple episodes of the New Game of Thrones.

[rdmc]

ussionRDMC

I don't think I would talk to a Nurse from my Insurance Company. They started doing that to my Mom...she just ignores the phone call now. Insurance Companies are about profit...and their Nurses are really intrusive.

If I absolutely had to answer, I would just say, "I have MS and I have had it a long time. My QoL changes on an hourly basis." That would be the end of the disc.

BTW...I went to a Craft Fair here in Florida last weekend....Fair Season is starting! Two miserable hours. Heat is not my problem, because I am cold intolerant. But the Sensory Overload...came home and slept for three hours. I would have much better off watching a couple episodes of the New Game of Thrones.

Hi Katie,

Thanks for the advice. I do notice I'll not hear from one of the insurance nurses for months, then something will flare and I end up having a slew of appts. and sure enough a nurse will call. I agree, it is about the money. I can't even remember what triggered this last bout of calls, I had pneumonia just after Christmas, and that might have started the calls.

Of course, as with most of us, you've got one problem one week and then another the next...and she kept calling for followups to the appts and if they're changing any treatment, etc. Anyhoo, she indicated that this call would probably be her last one, and I think that's why the QOL question. I work from home, so my issue is often she calls right in the middle of some crisis and emails are flying back and forth, then I just tell her it's not a good time.

When I was using a DMD, the insurance company would have one of their pharmacists check in with me from time to time. Those calls I enjoyed because we "talked shop" about meds, and side effects. He had never heard of a baclofen pump, so I brought him up to speed on that. Those were fun and informative calls, a lot of give and take about meds.

The reason I wanted to reply to your post is you have the same issue I have with enjoying places that were previously enjoyable. It's the sensory overload. Too many people going too many ways, and it absolutely sidelines me and exhausts me. I can sit on a bench or chair and watch it go past, but I can't get in the middle of the action. Scooters don't help, in fact make it worse because you're trying to navigate through a crowd. Noise levels too seem to set me off. I was talking to my BIL this morning and he mentioned he was going to the Strawberry Festival in Plant City this afternoon (made my mouth water just thinking of that shortbread). Again one of my favorite outings in the past...but even in my healthy days the crowds were unbearable (I'm dating myself, but I often joked with my husband that the Strawberry Festival crowds reminded me of the original Star Trek episode about a planet called Gideon...too many people to move around.)

My favorite fair used to be the Renaissance Fair on the grounds of the Ringling Museum...it's wonderful entertainment.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[JerryD]

I have had many of these calls from 'nurses' on behalf of insurance companies. I have been blunt and forth coming with my answers. I tell them that, if they don't know that MS is 'incurable' and ' debilitating', educate themselves, like I have, and don't call me again because the questions cause me distress ! Even if the nurse calls me again, I ask the nurse if they have a treatment or cure in mind that could work for me. I tell the nurse that my life is 'hell' ! I have told the nurse that I am a prisoner sentenced to 'life' in prison. What kind of QOL do you assign to a person 'life in prison'? And I don't hold back!

[Mamabug]

I like that you rate your quality of life based on your standards! Good for you. . .

Yup. What she said.

[aitch10]

I have to use myself as a barometer because muggles(great use of that word!)either, at best, pity me or, at worst, would claim they'd rather be dead than be me.

But using myself as a barometer I'd rate my QOL as good-to-excellent.

[hunterd]

I think that with 10 different people you could get eight or 10 different answers, and none of them would be wrong. But I definitely like yours the best, that might be because I do not base my quality of life on what I cannot do but rather what I can.

[Marco]

I normally hear the term quality of life used for people near the end of life. I am not a fatalistic person, but I realize tomorrow isn't guaranteed for anyone. Whether comparing yourself to others, or even your former self, there will always be areas of disappointment. Even without MS, our physical and mental capabilities will change and eventually degrade over time. I try not to spend time worrying about the things that I am powerless to change. Instead of looking at what I cannot do, I try to focus on what I can do.

Maybe some of the dilemma stems from how we believe life should be. I never expected life to be either fair or easy and it hasn't been. There are times when I wish I could still do "X," but overall my life is blessed. I try to be grateful for the big things, small things, and everything in between. Counting blessings certainly doesn't change my abilities, but it does change what I focus on.

One of my favorite passages reads, "Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things."

[Thinkimjob]

Well whatever my previous definition was, it didn't include peeing my pants and falling a over head while valiantly staggering to the loo, which was this evening's sunshine and lollipops experience.

My old Nana would always say at funerals, "Ah well, poor thing, they're better off, he/ she had no quality of life."

And yes, I'm bruised, battered and begrimed, but it could be worse.

[Sir-Voor]

Help your insurance company find a win/win.

In addition to asking “compared to what?” I am thinking Which life?
I have work life, home life, social life, spirituality life, my online life and others.

Wikipedia has several definitions of “Quality of Life” and I think she is referring to the healthcare definition.
I’ll spare you the wiki’s wordy legalized definition and translate it.
Basically; how is your ability to connect to your environment being negatively affected and your ability to achieve your personal goals, hopes, and aspirations?

Considering helping people stay connect and achieve their personal goals is a morally correct thing to do, the fact the being disconnected and losing their goals leads to increase health issues and cost also motivates them does not concern me.
I see it as a win/win, and I always seek win/win outcomes in life and like it when others do also.

So the question to your nurse is “What is her and the insurance company’s goal? Is it to get a number for their data base or are they seeking the win/win and trying to keep me connected and active in life and to have aspirations and goals?

Will a scooter or going off-peck-hours to craft shows help, and if so how can the insurance company help and find a win/win.

[JerryD]

Come on Sir -Voor ! Are you really 'serious' in saying " are they seeking a win-win...". I am NOT trying to be a protagonist but every time I spoke to anyone who was calling on behalf of an insurance company, I asked the caller "What is their purpose for asking these questions?" Their answer was only to collect data ?" I told the caller that I was not going to answer because the answers belong to me. I told the caller that the answers would cost them money. That was that! No calls for some time !

[rdmc]

Will a scooter or going off-peck-hours to craft shows help, and if so how can the insurance company help and find a win/win.

My insurance has very specific qualifications for a scooter, or electric wheelchair. I'm mobile, thanks to a baclofen pump, just not for long periods of time.

I've used a scooter before, and I'd purchase one for myself, but the start and stop of them messes with my proprioception and I feel more off balance.

Your idea about low off-peak hours is a good idea...I've used this when I had to shop at a Walmart ...go to a Walmart at 4 AM and there's nobody else in the store and it is easier to keep the
Walmart Syndrome at bay (now I've discovered Walmart free to home shipping and neither my hubby or myself have to make the trek.) But the outside fairs we have there are no off peak hours, they're just crowded all the time...that's a good thing about Florida, always plenty of outside activities, down side so many people take advantage of them.

And there's always the weather. It's 71 degrees right now and it's 9:30 PM, tomorrow it's going to be 82. I'm having to crank on the AC and it's March 2nd, yikes, so the heat is almost always a factor year round.

But going back to the QOL question, I do not feel that my QOL is diminished by not attending these fairs, I have fond memories of them, and I have made my peace with my limitations. I'm really quite happy to be at home in the AC.

[rdmc]

One of my favorite passages reads, "Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things."

Marco, yes that's a good "reminder."

My personal favorite...paraphrased, Don't worry about tomorrow because you've got enough trouble to deal with today

BTW, how's that pump working for you?