Whose the Blame

[Sumanadevii]

Whose the blame?  Is it MS that puts us in wheelchairs or is it our own lazy *****?  You tell me.

[Sumanadevii]

Just so you know, I would never attempt to judge another sitting in a wheelchair.  I would never use the flip phrase "use it or lose it".  Why?  Because I think it is hurtful. On this board we have no idea of why some are using wheelchairs.  It may be due to lack of physicial strength or emotional strength or pain level.  I think if we are all gonna be bragging on how supportive we are of each other when a poster says "ouch that hurts" it should at least be heard.

I have felt heard even if others felt differently.  I had my say and as always am moving on.  Maybe one person that has never thought it could be hurtful to some will now consider.  If not, true to my own nature, I held nothing back...lol...I am just me.

[Sumanadevii]

You know what I think Red said best?  She said, "I think 'use it or lose it' is a hurtful, blaming and cruel phrase."  So one agrees with me!!  

I may be a bit over sensitive but I think there are others on this board that may feel the same way given the right conditions.  

I have been on steroids monthly for almost a year,  I can no longer take them due to gastro problems.  I have been off them eight weeks.  My body functions at a lower level than when I first went to my neuro.  I can not move my right hip, foot or leg.  I have a hard time sitting up straight.  I have to hold on to walls to bathe.  If I am in my wheelchair I need a seatbelt because my body is floppy.  My right hand tires just using the control.

Now see that picture in your mind and imagine how you might feel hearing the term "use it or lose it",  Hell, on the steroids I thought I was getting stronger  Now I find myself a useless lump.  And yes my neuro has another plan.  I will see her when she returns from vacation.  Whatever the plan, I am in.  In NO part of the plan do I want to hear use it or lose it.  No, not after my battle.  NO NO NO NO. ...and again as Red stated we are the warriors.  I'm a damn proud one.  Don't insult me.

[heljell]

Im new in finding whats wrong with me I have weakness that keeps me from leaving my house and wishing everything in my house was no more than 5 steps away.

When I hear move it or loose it, I take it as move what you can before its gone. Like I want to see the world and if I dont move I may loose that chance. One may want to climb a mountain and hurry or you may loose that opertunity.

Yes depending on my mood I too may take great offense to the phrase.

What I hate most is I dont look as weak as I am or sick and people tell me oh yeah I know what you mean but I never complain I just push through it. But no matter how hard I try I cant make my hands do something they just wont work right, and when everything is so difficult as if doing it for the first time it becomes so exhausting that taking is too much.

But my last nuero said it must be anxiety since my lesions didnt change after 3 years

[supermum_ms]

I can think of so so many conditions that recommend keeping active, so now ALS is being researched to see if it would help or not, it will probably open the gate for more research to happen on the subject. What i did not see was anything that suggested 'blame' or 'lazyness' or even responsibility being place at the ALS patients feet.

"It really is about quality of life," said Jones." ALS is incurable, but if exercise can make an ALS patient's life more comfortable, they're better able to manage the disease for longer and it makes their lives a little easier, it's worth pursuing."

I dont think I or anyone will change your understanding of what the term means, your turning it into a judgement statement when it isn't. Just about anything can be turned into a judgement statement, a persons tone can make even the friendliest term into something negative but that doesn't translate to it forever more being negative.

This term is becoming so commonly used by society that it has become a soundbite of little meaning and generally its not infering blame unless you choose to interpret it that way. What about the term "no pain no gain" does that infer your not working hard enough unless your in agony, no it doesn't but some people will interpret it that way and just because they interpret it incorrectly doesn't make it true or have more meaning than it does.

I've said this too but I think Red said it better "It's not our fault at all!!!!!  Yet we need to have hope, dreams and perseverance.  Breathe and live in spite of this disease.  Those who want to shame or blame us are cowards.  We are the warriors."

Peace...........JJ


BTW: The creator of the thread gets the option to choose button of any responding post from having their cursor hovering a post, move to another post and the system gives you the option to choose that one and so on, the same thing happens with the report icon.

[Sumanadevii]

Here is why you can say the same thing to an ALS patient.  

http://www.physorg.com/news195217468.html

One is a disease of the muscles, the other a disease of the nerves.

Use it or lose it.

And, I don't understand why but I was asked to choose JJ's post as best answer.  I had to leave and when I came and logged back on, it was gone.  And yes, I would have choosen it.  It was the ninth post on this thread.  

[Ufrustrated2]

>> For every day I try to recapture my former life, it puts me 3 days trying to recover.

BIG ditto