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Quality Of Life Where are You?

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:36 AM in Chronic Pain
The Quality of Life scale is one of the main reasons I began looking for others like myself. Reading that scale scared me very bad. I cried for days when I read that scale and the best I could manage on it is a 2 !

At what level would you say you were at? Doesn't make you sad or angry to find yourself at that level? And have you found any ways to move up the scale if so what?

Thanks for listening and sharing, I could sooooo use someone to let me know they made it higher on that scale after doing something!



  • you and i and a lot of others here may be low on that scale but we have not given up. we see the sun shine brightly sparkeling in the water. we see the bright look in our family's eyes. and we do see ourselves moving up the scale.... :)
  • I have not seen the scale you are speaking of so I do not know where I would be. I just know I would also be a low man on the torum(sp?) pole.
    I can not do my own house cleaning, my meals are delivered to me by Meals on Wheels, someone has to mow my lawn for me, something I use to LOVE to do and I have a riding lawn mower!! I no longer drive because of the pain meds I am on plus a knee injury took me out of the drivers seat.
    But you know what Kathy....I refuse to give up!! I am still the happy person I always was. Friends come to call or are always calling by phone and we have a great time talking and laughing.
    No Kathy...I will NEVER give up!! For me the sun is always shining. Even with all the pain, I love life. Right now fall is here, my favorite time of the year. In about 3 more weeks my mountains will be blazing with fall colors. It is stunning, breathtaking and it makes me so happy to be alive.
    It takes a special person to live with constant pain as we do. You are special. You may not think so but you are very special and you have brought a lot to SH. Thank you for being my friend.
    Patsy W >:D<
  • dilaurodilauro ConnecticutPosts: 9,842
    quality of life scale , about the same way I feel about the pain scale. There are way too many human dynamics that come into play when putting someone up on a measuring stick. I know that we do need to form to identify where a person is, so until something is better, I guess we have to do with what we have.

    But quality of life definitions mean so much different things to different people. One person may be very content with the fact that they can open their eyes in the morning and communicate. While others, that quality is based on the fact that they can get up and walk 5 miles at a brisk pace.

    Is one right or better than the other? No, it all comes down to what makes us tick as individuals
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • If you're referring to the ACPA quality of life scale - http://www.theacpa.org/documents/Quality_of_Life_Scale.pdf -

    I think ACPA has done some really great things for pain patients, but that quality of life scale isn't one of them. In fact, I think it's one of the most useless tools ever developed. #o

    Aside from anything else, it's extremely value-laden and culturally biased. You can't base a person's entire quality of life on whether or not they can (or do) go to work/volunteer daily and socialize on weekends.

    Take the quality of life they define as a mere 2 steps above non-functional:
    Get out of bed but don’t get dressed
    Stay at home all day
    I don't call that a poor quality of life.. I call it Saturday and that's been my idea of a perfect Saturday for most of my life, even during my pre-pain days. :))(

  • I will now say that I am on a long term Saturday from now on. Sounds fun thought of like that.

    Yes that scale should be different as each of us are different. But as a basis of what you can now do verses what you once did... it really sends you for a loop to see on paper (or computer) how much life has changed for you.

    I will keep my Saturdays open for fun posts and laughs to share with all the great people here on SH.
  • I just checked it out. What a crock =)) Nowhere did I see anything that said can you do what you HAVE to do. I would love to stay home all day and not get dressed. In fact, I hardly ever get dressed until I HAVE to go to work. Being a widow, I have to work, whether I feel like it or not. And I don't socialize on weekends, because I'm trying to rest up and do a little housework and groc shopping, so I can get thru the next work week. In all, I think it would raise unrealistic expectations. Just my 2cents.

  • i was told that you illness will not reduce you life span but will drastically reduce you quality of life ..there are ways of looking at that ..first if i was on my own in a small grotty bedsit with no heating /no recliner and all my other luxuries and no wife etc my quality of life would be terrible ..but even though i cry in pain most days i count myself very lucky .as i sit in my expensive recliner watching my large tv and being able to talk to friends on the laptop i feel sorry for those worse off than me .there was a time in my life when i was living on the streets after my mum/dad split up i was homeless for about 12 months and that was hard to live like that so i have had hardship in my life ..but at that time i was well i carnt imagine having to live like that now being so ill i would not be able to cope ..i could moan on about no being able to have sex /work social life etc but after my past life i think i am very lucky
  • Straker that is a fantastic attitude to have and you have come a long way and worked hard to get and stay where you are. Some of this acceptance of our condition is down to perception and expectation, our life of two halves to some extent and it is normal to want to be the person we were before and Stakers view that even here and now in pain is a better place than he was, has to be applauded.

    For my own condition I am perturbed on the level of pain I am expect to endure on a daily basis, some of this is the expectation I place on myself and I am learning over time that the desire to do tasks across the range are not now possible however hard my attempts.

    Enabling achievement while in pain is not possible for some and although the quality of life issue is very personal to us as individuals it has the norms and expectations of others in its formation, pain does not allow a progressive tick list of qualities to be achieved, we have to do the best we can with what we have now, today.

    Seeing our situation as the worst thing ever is understandable and equating it on the basis of what is happening to others, may order the perception of where we are in comparison to others situation and we have to see this as helping us. Knowing where I am on the spectrum, does not reduce the actual level of my pain only the perception that as said, others are worse.

    I am trying to support a man living on the street who also has some practical and MH issues, As Straker said this has focussed my attention on him and placed my own condition on the overall scale, how do you survive those cold nights and limited food, that takes some strength and perseverance.

    Passion in itself will not change our situation, pain mandates that we prioritise our lives and attempt to do the things that are feasible and important to us now, I smile in the knowledge that this differs from my healthy persona existence and the priority I had then, I have learned about myself and life.

    We all need to make that list of achievable goals and do the best we possibly can, given our situation.

    Take care John

  • :D I say we burn that pain scale at the stake! Just another thing we're supposed to measure ourselves against. What a load of doggie do!

    My dad (bless his soul) had a saying that has stuck with me my whole life -- "Any day above ground is a good day!" -- and that's how he lived his life right to the end. No matter what adversity came his way, he woke up each day feeling blessed to be on the earth. When I get all mired in self pity, I think of dad and that saying and it brings me back around.

    >:D< >:D< >:D< >:D< to you Kathy -- your spiney friends are here for you!

    Take care,

  • ACPA does a lot of work lobbying for policy changes and raising awareness about the incidence and impact of chronic pain on Americans. I'm sure that their quality of life scale benefits them greatly in the legislative/policy arena, because it appears to be a research-based tool (even though it's not) and when used, it describes the majority of pain patients as nearly non-functional people with a pathetic quality of life.

    As sad as it is, the more pathetic and non-functional they can make pain patients look, the easier it is to sell their policy proposals. That's not to say the issues they raise aren't valid, it's just that in the current climate, pity beats perseverance every time.
  • I don't like the Quality of Life Scale either, for many of the reasons stated here. But one thing I haven't seen mentioned yet is that our quality of life greatly varies from day to day, hour to hour or even minute to minute.

    After my injections, I was given a pain diary sheet that listed "AM" and "PM". It really wasn't enough. If I created a pain diary for myself, I'd have to list each hour of the day and that still might not be enough.

  • dilaurodilauro ConnecticutPosts: 9,842
    Many that are currently out there have either too much or too little detail to apply to everyone. Therefore, many people just give a number without really completely thinking about it. What has always bothered me is people that believe if they give a real high number (bad) in the pain or quality of life scales, the medical personnel treating them will give them special care or additional medication. That is far from the truth.

    I've simplified these scales, I use them many times when I go see my doctor or at the rehab pool. In fact some of the therapist has adopted my idea

    Today, I am displaying a new set of scales:


    I cant do anything that I really want to do

    I can do just about everything, not the way I want and when I do, I dont know why I keep hurting

    I am so happy, hard to believe it but I can do just about everything


    I hurt so much, please help

    I have pain, but I can handle. I wish it would go away though.

    I have almost on pain. Yipee!!
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • i'm a seven, whoopie
    time to train for that marathon
    i didn't know i had it so good. now i feel great
    yes i am kidding but i did rate a 7 on the scale, but my quality of life does not seem that high to me even if i am semi functional. this must be why i smile at my students all day and not yell at them, i am happy i guess according to the scale. it was at least fun to take and see what other things rate on it. when you get over 60 i don't think anyone will rate high due to growing older.
    see ya later i'm off to lift weights, play a couple sets of tennis, run 10 miles and cruise downtown for chicks. then when i'm done with all of that take a nap
    hope you all feel as well as i do, ha ha
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Quality of life scales are someone elses idea of what we can do. They are drawn up bu Dr's who have no pain, and no idea of what we live with.

    I drew up my own pain chart, 24 hrs, pain levels from 0 to10 -with word descriptions of what each of them meant to me, I dont wish to toss darts, but the first thing that is written on my chart, is "work before meds". In other words, i have a list of 8 or more things to try, before I use meds, and when I chart my pain, I have ways of knowing whether I need to slow down, in order to hurt less, or whether then pain is from something else, and does require meds. This becomes clear, from the pain chart.

    I have used it with my pain Dr and my PCP. When they viewed it, they finally got the idea that meds were my last line of defense in this experience with pain.

    Getting fuzzy - gotta go!
  • Bionic, you made me laugh with that!! I, too, so look forward to my Saturdays, as it means I can rest up after the week, and hopefully bring my pain levels down from having to go to work!! (I'm laying on my couch in my jammies as I write =)) )
    I also don't hold any (geez I forgot the word, I swear my memory is a seive) well, anything to those pain and quality of life scales. I think they create more psychological porblems than do any good. As long as you keep positive, which I know, is oh so hard some days, then you can muster the strength to do something, even the slightest, most minimal activity, each day to feel good about yourself. Even if it's getting out of bed, showering and getting dressed. Some days, that is the greatest accomplishment!!!
    My psychologist gave me advice, which was actually for managing my anxiety attacks, but I think it works in other areas as well; "Chunk it down". If you take the small accomplishments that you achieve, like getting out of bed, that's one, getting showered or even just washing your face and brushing your hair, that's another, getting dressed, that's a third, making coffee, yet another, I think you get my point. Chunking down these little activities that we take for granted, but celebrating that you accomplished it, will raise your spirits and lead you to a better quality of life. We're not as hopeless as we feel sometimes!!!
    Hope you all have as good of a weekend as you can have!!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • From now on Ron I am gonna use this scale by which I rate my daily pain and Quality of Life.... Beside from being true it is also much more fun to rate this way.

  • been given bad news ..so what do i do ? i could curl up in a ball, of depression and sulk for the rest of my days or i could carry on fighting ...i am going to rest my goals and start a fresh .let me explain ..6 years ago i could walk the dog 3 miles 2 times a day and swim 4 times a week .3 years ago i had to cut he dog walking to a mile once a day on the flat and the swimming down to 2 times a week .2 years ago i have has to cut out the walking and swim only when i could ..now with pain killers adjusted .i am going to try pool walking and little walk just down my street with the dog ..i gave that as an example as you could see where i was going with it ,,you may also be able to apply a similar logic to your day ? now you know that you carnt do what you once could you now have to cut down and alter your life it suit you health issues??
  • Tony!!! That's exactly what I was talking about "chunking it down" earlier. Celebrate the little accomplishments you make, even if it's only walking as far as 2 houses down the street, you did it!! That's the important thing.
    As for your last statement, now that you know you can't do what you once could, it's so true, you can't dwell on the past, it's done and gone. Make a goal each day, and focus on the future, even if it's one step, 10 minutes, one hour, one day at a time. Focus on and celebrate what you did achieve, not what you didn't. Like for you Tony, if you make it into the pool, and find you can't do the exercises, focus on the fact that you got changed, walked out to the pool and made it in. How long has it been since you did that? That's an accomplishment, and what you should focus on, and congratulate yourself for doing it. The power of positive thinking goes a long way in my book!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Scale or no scale.... Like in my signature, I do what I have to do, shower, take daughter to school(1 mile away) go to dr, be alive. I don't do what I don't have to, vacuum, sweep and mop, pick up something too heavy, mow the yard,cook if I can't.
    Thank God my kids are big enough to do these things when I can't. Thought that day would never come, LOL
    I like Ron's scale,is that it though, is there more to it I hope? If so please share the whole thing.
  • I had to get a bit of medical attention this morning (I'll go into more detail later) and I got a little reminder about nature's pain scale. Seemed pertinent to share in this thread.

    During the assessment, I "named" my pain on that stupid smiley face scale and then they went on with vital signs, etc. On their first assessment, my blood pressure was 189/110 and my pulse rate was 122.

    My doctors and I both have a well documented history and know that my blood pressure stays at about 90/60 when my pain is well managed. Seeing that change gave them more information about my pain levels than I could possibly have verbalized or quantified with smiley faces or numbered scales at that moment.

    I think so much is based on the subjective measures of what we can and can't do at any given moment or how we interpret a 5 versus a 7 on the numerical pain scale, sometimes we forget that there are some more objective physical measures that we can and should be tracking and including in our care plans.

    On that note, I think I'm off to nap a bit.. it's been a day.. (|:
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