Thursday, August 2, 2012

Carnival of MS Bloggers #120

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Future with MS and Jello Legs

by Jamie at Newly Diagnosed with MS

Being newly diagnosed with Multiple Sclerosis is scary business.

I remember the day I got the diagnosis.  It was heart breaking.  I thought my life was over.  Now that I have been on this ride for more than a year I realize that it is not over, I have been given a new life.  In the midst of all of the uncertainty with MS, I realized that I do have control over some things and that is what I can do to keep myself as healthy as possible.

One of the first things I hear when I talk to people who are newly diagnosed is “I’m not ready to die!”

Well, the good news is, most likely that really does not need to be an immediate concern.  The fact is while we are more likely to suffer from disability in some form or another; our average life span is quite in line with the national average.  MOST people diagnosed do not die from MS but other causes, just like everyone else.  With the treatment options that have become available in the last two decades life expectancy for MS patients has steadily increased over the last 50 years and the progression of disability is able to be slowed in many cases with consistent treatment and modification of lifestyle.

Well what does that mean - Modification of lifestyle?  It means pretty much what every doctor tells everyone.  It means you should eat more healthily, get as much exercise as you can tolerate and avoid stress.  Oh and you should take your medication regularly, not just when you feel bad or cannot function properly.  MS is described as disease with symptoms that come and go so just because you cannot see or feel an attack does not mean the disease is not progressing.  It is possible to have progression without outwardly visible signs.

So, if you are “not ready to die!”  Listen to your doctor!   Take control of what you can in this crazy ride.
  • Make healthy menu choices; avoid high fat, high sugar foods.
  • Exercise – Keep your body in the best physical shape possible.  The blood flow is good for the brain and memory retention and the physical benefits are paramount when you have a relapse.
  • Avoid stress – I know this one can be the most difficult.  Most people don’t look for stress, it finds them.  You have to learn to walk away, say no, stop and smell the roses and enjoy the moments you have.  All of that sounds so easy (and like a bunch of cliches thrown together) but it is essential for your health.  Take it slow, eliminate one stressful thing from your life, adjust and then do another.  It will pay off in the long run!
  • Take your medications regularly – If you have vision problems, do you stop wearing your glasses/contacts because you can see well when you have them on?  No!  They are working so you keep wearing them!   So why would you stop taking your medicine if you feel better and fewer lesions/plaques are forming!? It is doing its job!  Let it work!
So yes, it is a scary, crazy ride but you have  the ability to take control of some things along the way to make it a better than expected trip!

by CJ at my MonSter stories

I don't think it's wrong to ask "Why?". I don't ask "Why me?". Sometimes it's painful and difficult, but I try to look for the positive or the good, or at least a life lesson, in the seemingly "bad" things that are always happening to me or those I love. Struggles, trials, pain, difficulties, rejection, betrayals, illnesses, tragedies, heartaches...all these have had a major role in making me the person I am today. Some of the things I've been taught or made stronger in include unconditional love, compassion, mercy, grace, kindness, patience, self-control, endurance, discernment, contentment, joy,!, as I write this I just realized...a lot of the "fruit of the Spirit"!

Much of my thinking on the subject of common human struggles has been written about in songs, and as music speaks to me and for me in so many ways, certain songs quickly come to mind, including this one that I would like to share:

( © Post by CJ ~ please do not copy)

by Janie at PasstheMSplease 

I got up and walked across the floor. It may not sound like much, but if you’ve ever tried that with Jello legs, you know how awesome it is. Believe me, when you have Jello legs you don’t want to do this…….the floor is very hard when you hit it.

I have also tried to get up with NO legs. That is also a no-no. When you try to stand up and there seems to be no muscles in your legs, you don’t get very far…...well, actually you do…..but it is not in the direction you wanted to go.

Those of us with MS go through a lot of phases with different parts of our bodies. My legs are one part of me that is so unpredictable. Some days I can walk fairly well. I bump into the wall and the furniture, but I usually get where I am headed. Other days, I sit in the recliner or lie on the sofa because my legs won’t go where I want them to. Some days, I am blessed to get out of bed because my legs won’t hold me up.

I usually use a cane to walk out in public. Open areas scare me. There is nothing to hold to and if I start to fall, there is only one way I’m going. I really don’t like the cane because I don’t feel that it gives me the support that holding on to my husband does. Most of the time, I am holding on to his shirt, his hand or the back of his pants at the waist. This seems to work for both of us and makes me feel more secure.

My husband is trying to talk me into getting a walker with a seat and a storage area. Many times when we have been shopping, I have wished I had one. I could just turn it around and rest for a moment on the seat. It is a hard decision for me to make because it means that I probably NEED it rather than just wanting it. I guess we all hate to think we are getting to that point and fight it as long as possible.

I am thankful that there are these aids available to most of us. We have a Hospice store nearby and can often get things there without spending so much. Unfortunately, things are not always there when we need them and we end up paying ridiculous amounts of money at a drug store or online for something that really should not cost that much. For many of us who are not on Medicare or have not been approved for disability, these costs are out of reach and we do without.

I used to have a recipe for a lime Jello dessert bar. It was fabulous! I wish I could find it……….I like that use of Jello much better!!

This concludes the 120th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on August 16, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 14, 2012.

Thank you.


  1. Multiple Sclerosis is a chronic and often disabling autoimmune disease. Majority of affected people say that fatigue is their most limiting symptom. Other MS symptoms may come and go, but fatigue seems to be a constant one, no matter what stage of MS they’re in.
    Linda Thomas

  2. Yes, the MS fatigue is horrible, frustrating, debilitating, and is really unexplainable to anyone who has never experienced it themselves. How do you get loved ones, family, friends, coworkers, to understand? :'(