Couldn't get this to transfer to the post properly... so click the link to go to Momentum... it's worth the visit!!
The magazine of the National Multiple Sclerosis Society
Spring 2009
Volume 2, Number 2
(formerly InsideMS)
Momentum wants to know... about your pet. See the “The many pluses of pets” story in the Healthy Living section and then take our survey.
Table of Contents
COVER STORY
Activism Now! - 2009 Public Policy Priorities for the National MS Society
The first lady on living with MS
Two big wins in 2008
Feature Story
A Heart for Walking
by Judy Hasson
Readers Report on their treatment team
From the Editor: Lighten up
Low Vision Alert: Fitness and low vision? Yes!
On my mind: "If I could... then I would walk a million miles"
Tuesday, February 24, 2009
Monday, February 9, 2009
Possibilities
Yesterday I had a mission. A mountain of miscellanea had accumulated in my garage... a thing here, a thing there. When three people tell themselves that they'll just 'put it here until I get to it'... well, it accumulates fast. So I told myself I would sort it and then heft the appropriate pieces to the attic... via the pull down ladder also located in the garage.
With high hopes and high energy, I set to the mission. Only to have to take repeated breaks to bring myself back into the house to cool down... this IS Arizona after all. THEN, the ultimate smack in the face... the ladder proved to be something I could not overcome. The pulling down and 'popping' up of said ladder is something that I've done repeatedly in the time we have lived in this house... but yesterday, my arms simply wouldn't do it. Mind says 'do it'... arms don't obey. And I can't begin to describe the anger and frustration that brought... or how it gnawed at my mind to have to ask for help with it.
You see, MS isn't just invisible to those around us... it's often invisible to the patient themselves. Truthfully, when I set out to do my garage mission, it never crossed my mind that I wouldn't be able to do it... I usually don't think in terms of *can't*. And the treason of my arms... the mutiny of my strength... it comes as a total surprise and often jolts me off my feet. A slap in the face that says "No".
So understand when those around you 'forget' about the MS... and capture every moment of your own that you're allowed to forget. Live the moments as fully as possible... whatever is possible.
(And oh... I've added a new link to my blog list... check it out... full of encouragement and information... Creating a Good Life )
With high hopes and high energy, I set to the mission. Only to have to take repeated breaks to bring myself back into the house to cool down... this IS Arizona after all. THEN, the ultimate smack in the face... the ladder proved to be something I could not overcome. The pulling down and 'popping' up of said ladder is something that I've done repeatedly in the time we have lived in this house... but yesterday, my arms simply wouldn't do it. Mind says 'do it'... arms don't obey. And I can't begin to describe the anger and frustration that brought... or how it gnawed at my mind to have to ask for help with it.
You see, MS isn't just invisible to those around us... it's often invisible to the patient themselves. Truthfully, when I set out to do my garage mission, it never crossed my mind that I wouldn't be able to do it... I usually don't think in terms of *can't*. And the treason of my arms... the mutiny of my strength... it comes as a total surprise and often jolts me off my feet. A slap in the face that says "No".
So understand when those around you 'forget' about the MS... and capture every moment of your own that you're allowed to forget. Live the moments as fully as possible... whatever is possible.
(And oh... I've added a new link to my blog list... check it out... full of encouragement and information... Creating a Good Life )
Friday, February 6, 2009
Naps
I grew up in a family that considered naps a very good thing. My mother and grandparents even had my brother and me convinced that snuggling under a quilt on our beds was a luxurious indulgence... quite the accomplishment! I carried that mindset with me into my married life... and passed it on to my children (who, amazingly enough, bought into the concept as well). One of the things to look forward to on Sunday afternoons was a nice, long nap following church and a big lunch.
In the last few years, more notably during the last three or four, naps have increasingly become a necessity as opposed to a privilege. I have come to resent the time that I am required to 'rest'. I resent having to give up waking hours and the myriad activities associated with that time. I resent having something forced upon me instead of having the freedom to indulge myself as inclined. I resent that what was once an absolute extravagance is now a basic requirement.
In the last few years, more notably during the last three or four, naps have increasingly become a necessity as opposed to a privilege. I have come to resent the time that I am required to 'rest'. I resent having to give up waking hours and the myriad activities associated with that time. I resent having something forced upon me instead of having the freedom to indulge myself as inclined. I resent that what was once an absolute extravagance is now a basic requirement.
Thursday, February 5, 2009
Foggy
Today is foggy... not outside... but inside my head. My neurologist calls it 'MS Mud'... that foggy muck that my thoughts and actions have to battle through some days just to get to the surface.
I live in one of the sunniest places in the world and there are still days when the world seems gray... days when everything seems weighted down by dozens of tiny anchors. Motion seems delayed by seconds.... thoughts require a head start to form. My daughter says "I'm still trying to get used to you having days like this. It isn't you."
She's right. It isn't me. It's MS. And tomorrow, I pray, the fog will clear and once again the real me will be able to come out to play.
I live in one of the sunniest places in the world and there are still days when the world seems gray... days when everything seems weighted down by dozens of tiny anchors. Motion seems delayed by seconds.... thoughts require a head start to form. My daughter says "I'm still trying to get used to you having days like this. It isn't you."
She's right. It isn't me. It's MS. And tomorrow, I pray, the fog will clear and once again the real me will be able to come out to play.
Tuesday, February 3, 2009
Get It
Yesterday was a tough day... woke up feeling like I hadn't been asleep... and actually for the most part I hadn't.
I parked myself on my bed with a book and a quilt... dozed off (thankfully... that was the goal...) and slept for three hours... and of course, woke feeling no more rested than when I closed my eyes.
That is one of my frustrations with MS fatigue. The general assumption is that if one takes a nap, one will wake feeling more rested and refreshed... thus making the investment of time (that could have been spent doing something else) a good one. With MS I can sleep an entire day... or day and night... and not wake feeling any less fatigued than before I slept.... which leaves me feeling that I have wasted a huge block of time... lost time.
I slept fairly well last night... with the help of medication... and still this morning, I'm exhausted.
My family is great... when I'm tired they tell me to go lay down... there's (usually) no guilt trip associated with it either... but it's very hard to explain the extreme frustration that comes with not having the energy to do the things I want to do. They have valid frustrations about things not getting done... but generally seem to believe that it doesn't bother me that I'm not doing what we all think I should be doing. I feel like I've lost a big part of my life at 47... and no one seems to 'get' it.
I parked myself on my bed with a book and a quilt... dozed off (thankfully... that was the goal...) and slept for three hours... and of course, woke feeling no more rested than when I closed my eyes.
That is one of my frustrations with MS fatigue. The general assumption is that if one takes a nap, one will wake feeling more rested and refreshed... thus making the investment of time (that could have been spent doing something else) a good one. With MS I can sleep an entire day... or day and night... and not wake feeling any less fatigued than before I slept.... which leaves me feeling that I have wasted a huge block of time... lost time.
I slept fairly well last night... with the help of medication... and still this morning, I'm exhausted.
My family is great... when I'm tired they tell me to go lay down... there's (usually) no guilt trip associated with it either... but it's very hard to explain the extreme frustration that comes with not having the energy to do the things I want to do. They have valid frustrations about things not getting done... but generally seem to believe that it doesn't bother me that I'm not doing what we all think I should be doing. I feel like I've lost a big part of my life at 47... and no one seems to 'get' it.
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