Quality of Life for MS Patients: The Psychosocial Aspects of Chronic Disease (Part Four in Series)

By Lisa Emrich, Health Guide Friday, February 27, 2009

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In Part One, Quality of Life for MS Patients: Is it Health-Related?, we outlined four aspects to quality of life which include clinical health, role-performance, adaptability, and well-being. In Part Two, Quality of Life for MS Patients: The Role of Disease-Modifying Treatments, we discussed th...

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momdukes

2/27/09 4:50pm

Lisa,

You are good. Am I always the first to respond; I feel like I am hogging the message board. MS is a monster. It takes, takes, and takes some more. But we who suffer from this illness must learn to shove back. I can only talk about myself because that is who I know best. MS came in one day and took away my independence. My ability to walk, run, ride my bicycle, ice skate, walk my dog, which was and is soon going to be a Rottweiler, (I love those dogs). Now I no longer am able to work. But I am better off than most, I have a hobby in which I love, crafts, and I am good at it. I believe that reading and doing my craft keeps my mind active which in turn helps me with my MS. Now I need to be more physically active I order to keep my legs in good shape. They are pretty to look at; at least that is what I have been told. I do my best to keep myself active, and reading and my hobby keep my mind active. An active brain keeps MS at bay right? I refuse to let MS win. I refuse to lie down and play the helpless victim. Maybe I should but I cannot. I refuse to let MS win; I am going to give it a run for its money. I plan to send MS to Hell will gasoline draws. I will probably have to take a nap first. But all you MS'rs stay active, read, go even when you do not feel like it. When they say you can't, tell them, I can show you better than I can tell you. Life is good.

Mandy Crest, Health Guide

2/27/09 7:57pm

I totally agree with momdukes. MS is a taker. Few MS patients would say that their quality of life has not been affected in some way. Like every aspect of MS, those changes... well... change. Again and again.

Untimately, it is up to each of us to change our expectations. It is contrary to human nature, but necessary for survival. We find new ways to cope, new mountains to climb. We adjust our definition of quality of life as we go, for to do otherwise would mean that we have lost all hope.

Lisa Emrich, Health Guide

2/27/09 9:51pm

Hey Sherry,

You're never hogging the message board, ever. MS is greedy, takes and takes. We constantly have to reinvent ourselves and adjust.

Actually, I think that humans are amazing creatures. We have the ability to adapt and evolve like no other creature on earth. That ability, I believe, is a God-given gift. Adaptibility is a precious skill.

A friend of mine, named Ammey, said something recently which I love.

"Be like water and keep flowing."

That's what we must do and water is one of the most powerful forces on this earth. Thank you for your continued input and sharing. I gain so much from reading your stories and comments. Certainly brightens my day.

Lisa Emrich, Health Guide

2/27/09 10:04pm

Mandy,

Reading your comment made me think of a sentence.

Change is ever-changing and we must learn to change along with it.

Learning to cope, adjusting expectations and definitions, adapting to our lives and finding the benefit in what we do have are essential to living with hope and with this disease.

A research study which I didn't reference above looked at how patients measure their QOL, depending upon how long they'd had the disease and their level of disability. All of the patients had EDSS scores <5 (not too greatly disabled, with an average of 2.something). They were divided into three groups; those who had MS 1-10 yrs, or 11-20 yrs, or 21-33 yrs.

What was found was that those in the 21-33 yrs group reported a greater Quality of Life than the other groups. The first group 1-10 yrs reported the lowest Quality of Life. Amount of disability did not factor into the difference. What was determined was that those in Groups 2 and 3 had learned how to continually adjust as their disease progressed. It was hypothesized that the youngest group's perception of well-being was influenced by the fears and anxiety of the unknown future and hadn't learned those coping skills yet.

Of course, I'm paraphrasing off of memory right now, but it was something like that. I thought that it was interesting. So years and age just may be on our side in this one.

Maris B. Mohr

3/ 1/09 12:38am

Hi Lisa, Mandy, Sherry-Mom,

This is probably the most important part of the series because it brings us all in contact with OURSELVES, i.e. feelings, cognitive and spiritual reactions to our situations and what WE do with our situations.

Some old news about me personally: the day of my dx was like a release from some kind of externally and internally impossed labor camp. I was an overly conscientious (not the word I'm thinking of, but can't think of it now :-0) EFL teacher always trying to outdo myself for the benefit of my pupils and students. I had to fight the system in order to bring my classes to the top of the top by putting in tons of extra hours with the kids at school and more extra hours always getting their work graded within a day or 2, preparing interesting and exciting new ways to teach. It took it's toll, but I never took care of myself despite the weirdest sx and attacks that I suffered for over 20 years prior to dx in 1998 with the intervention of drs.

Then something happened with my rt eye (in retrospect ON) and I had a breakdown suffering from severe anxiety attacks and inability to function mentally so I decided to talk to a dr and start checking.

End of story: after a year of tests, pokes and pinches, MRIs, verious drs I was liberated by the dx of MS + FMS. That was 1998. I was able to continue teaching comfortably until about 2000. At that point I found that I couldn't climb steps to the classrooms, I couldn't stand on my feet for more than a few minutes without a leg or my back collapsing, I couldn't follow a text when reading with a class, I would end up totally exhausted and fatigued in the middle of a 45 minute class. The following year I cut my class-load and told my principal that I didn't know how much longer I would be able to continue. In 2001-02 I taught one of my classes, seniors that I wanted to be with until they finished school. They gave me another class that I was able to deal with until Chanuka break in Dec and which I stopped teaching at that point. My final retirement from teaching in school was Sept. 1, 2002. That was one of the best things I ever did for myself.

I was liberated from living up to expectations, living by other people's schedules, and not having the time and energy to take care of myself. My attitude became 100% positive. MS would bring what it would and I would be able to deal with it . . . and I have.

I'm lucky to have the best mate (husband) in the world, great daughters, both grown up now and with their families. I have a few very good friends who I can always count on. I have a main social outlet: the friends I have who swim every morning when I do. We decided to make a point of doing things for ourselves and really enjoying life, something that I had never had time for while I was working.

So I hope everyone can see that MS is not death sentence if you don't make it one. My life has improved by hundreds of %. I'm happier, face each day with a smile, tell people that I'm OK (usually) in the framework of MY OK (MS OK), and that things shouldn't be worse. That's something that people who speak Hebrew and Yiddish say to show optimism.

I can only wish every new MSer and all of you "seniors" the ability to put yourselves above the disease and not let it take you over. There are always things to do, people to "talk" to, groups and forums to join. Look inside yourself and see who YOU are and do the best you can with every condition and situation that awakens.

Wishes for days of NO PAIN, feeling good, being happy.

Peace & Serenity,

Maris in Israel

momdukes

3/ 1/09 5:08pm

Quality of Life

Maris,

It was so good to hear from you. I am so glad that things are going for you. You are so right: quality of life especially for me is what you make of it. I want to get to the point where I swim everyday in order to keep my legs strong, I want to be able to encourage others when they feel like all is lost. MS is not the end; it is a beginning to a different life. A beginning to another life they may be a little harder, but that is all right, what does not kill you, will make you stronger, I promise. My husband is so good to me, he gets aggravated with me because he says, that I act like that I still have two good legs, and that is good. But I need to realize that I do not, and he finds it embarrassing picking me up off the ground all the time, imagine that! I know, it is my fault, and I have to get a grip and realize that I do need help, and my legs are not the same. But, he will pick me up no matter how many times I fall J Maris you are right MS is not a death sentence! Your life is not over, so do not look at it that way. Yes it is going to change, but as we get older, all of our lives are going to change. We have to change with it. Guess what; we are always all right! Like Maris has said, if you are new to MS; get informed, talk with your doctors, and others that are in your shoes. Learn all that you can and more! Join MS groups, this one is the best! Nobody knows you like you. Do not let the illness take over you, you take over the illness. Be in charge of your life. Maris, thank you for being you!

Sherry/smomdukes

Quality of Life for MS Patients: The Psychosocial Aspects of Chronic Disease (Part Four in Series)

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