Whose the Blame

[Sumanadevii]

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

[Lulu54]

Sorry, but I don't understand the intention of this question.  Would you care to explain what you are looking for?

[supermum_ms]

Sweet pea,

I think your buttons might of been pushed with the "use it or loose it" comment, I get it and responded based on your hearfelt post. Read what i wrote and if i'm wrong please say so, i wear big girl knickers too.

Now hear me when i tell you, you are missreading blame when none is implied, it is a sensitive topic for sure and one you seem to be reacting too, pull your emotion back a tad and bring it more in line with that wonderful logical side you have.

Logically there is NO blame in MS, it wouldn't matter if you were the lasiest a$$ on the planet, MS is so unpredictable it will slap you at will anyway it wants and you simply have little say in where you end up.

For many years stress has been linked to MS but even that in the latest research is disputing stress has anything to do with getting MS or not. Stress is only minimally linked to relapses, stress affects everyones immune system, in MS the dice is rolling.

Who you are, what you are and how you lived your life has absolutely nothing to do with MS. MS doesn't care, it will take what it wants from you anytime it rears its ugly head, you know this like so many of us and seriously if there is one person on the planet that thinks you had a hand in getting MS or what its done to you or that if you'd only worked harder it would be different. Well they are ignorant idiots and thats their problem not yours!

Even in brain plasticity there is an understanding of changing what can and accepting what cant. You can't wish, want or hope it away because somethings are set in stone and no matter what you do its done.

Hugs..........JJ

[Sumanadevii]

JJ...thank you for answering and no my button wasn't pushed by what you posted.  My issue is this...We are an MS board.  That means any one with MS should feel part of this group.  There are MSers here that have only lesions on their spine and brain stem.  I know of at least three.  I happen to be one.  (There is one tiny one on my brain but is iffy.  It may be just age related)  Nothing ticks me more than for another MSer to use that term use it or lose it.  I think we either need two MS boards ...one for brian MS and one for spinal MS ...or educate each other.  Because frankly I find it very very hurtful to have the blame placed on my shoulders.  You (meaning all our posters) have no clue of the fight put up by some to stay mobile.  In fact, I would love to challenge those still able to walk to outride me on a recumbent bike.  We DID NOT put ourselves in these chairs...a monster did.

[Lulu54]

Obviously I missed a post somewhere recently that got you going. As for separate forums, it has to be three, then,  because I have brain and spine lesions!  :-)

If you point me toward the post that got this going I would be happy to read it.  I do know that more than once I have returned to the theme that we can't just wait for MS to take over.  We are in charge and have to find a way, whatever that is, to stay active.  If you listen to any of the talks, webinars, etc. you will hear the same theme repeated - we have to keep doing whatever it is we can do.  Stopping is a horrible option.

That is what HVAC does with riding, what you sumana are doing with the bike, and what I am doing with the assorted activities I do.  Just stopping and giving in to this MonSter is not a good option and will only lead to a faster decline.

best, Lu

[Sumanadevii]

There wasn't a post that was about the issue.  It was just said in passing on one of the threads.  My point is, we do  use it and lose it.  When that happens it is not our fault.  Why another MSer would use that term is beyond me.  Or do I just not understand the term.  To me it means, if you haven't use those muscles, you are going to lose them.  It is your fault...It has nothing to do with having MS.  You lost because you did not use them.

I guess it doesn't bother others but it does me.  I am me own person as you all know...lol...I hate the term.  I find it hurtful.  

[supermum_ms]

But isn't that the missunderstanding and missuse of what that term means? You know it, I know it and thousands of others know that it doesnt mean you put yourselves in the chair...a MonSter DID do it!

We only know of anyones fight from what we give of our selves, you dont know mine and I will never assume to know yours!

I actually feel miffed sometimes when someone states I need to exercise more, eat better, have my fillings removed etc etc what the heck does any of that mean and should I even care. What they think when its wrong just isn't my problem, i am all about educating each other but banging my head against a brick wall sometimes seems like too much effort. Exercise makes me weaker and the more i try to do the weaker I end up, so does that make me lazy and bringing this on my self, no it doesnt at all.

What about the MSers who have both spinal and brain lesions, why seperate and assume one group doesnt get the other? where would it all end? Seriously, I am loosing my cognitive mind, my ability to communicate and my mobility and yet I still manage to laugh and be happy with my lot so which group would you slot me into?

I do think you are being sensitive to this, and believe me or not I do feel I understand where your coming from but I still think you are reading blame when no one is actually openly saying it or implying it when they use the term "use it or loose it". You are interpreting it as an emotive concept and thats not what it means or suppose to ever mean.

Hugs..........JJ

[Sumanadevii]

I guess I can be sensitive.  Use the term all you want.  Should I have kept my mouth shut and smiled?  I think we should be allowed to voice when our feelings are hurt.  It doesn't bother me if none of you agree.  I am Sumanadevii and those are my feelings on the issue.  Big deal.

[Sumanadevii]

Next time I see an ALS patient, I will remind them.  It seems to be the thing to say.

Use it or lose it.

I am sure they, too, will find it uplifting.

[supermum_ms]

Wow i never thought that would come from you!

[shermay]

But how can we help it?  If our legs won't work etc., they won't it's a fact of living with MS.

No matter how hard we try - if it isn't going to work then it won't - true?

I can't find the post that has upset you, but we are all adults on this forum, and batttling the same disease - and like lulu said if you want to have separate forums for spinal and brain lesions, I really don't see where that will lead - as I have lesions on my brain and spine - so in what section would that put me?  

Some days I can walk, and others I can't and  I have to go in my roller.

Yes I am angry at my disease, and feel very angry at myself for not be able to do the things I used to no matter how hard I try.  I am so frustrated at myself and feel guilty also for my family that I can barely look after anymore.

Use it or lose it?????     What can we do??  even the most superior willpower cannot over come MS sometimes.

Believe me, we are all angry with our bodies for letting us down - that is why we  are part of the  Forum and one big family of friends.

I have honestly missed the post that has upset you so much - but these are just my thoughts on reading this thread - and ( as I am sure others will agree) this is a long post for me ;))

Now you take care girl - we are all in the same boat together.

Debs

[jujuminx]

One size never fits all, this is true for most things and certainly true of MS. Some of us are symptomless and some are facing major challenges just to do basic everyday things. There is no fairness in it and in spite of a common diagnosis, the effects on our bodies are as different as we are.

I exercise my body b/c I can and I should, and since my dx I do it with a lot more gratitude.  For people like me, it is important to use what we have, while we have it. It by no means means that b/c we are using it, it will always be working effectively.

If and when it goes, whether from MS or just old age, it's gone. There is no blame, it just reality.  We can't stop progression (yet) anymore than we can stop aging or death.

I can't imagine that anyone would say you, or anyone else, is responsible for a disease that they have. Or that you can reverse the effects with mind over matter.  I echo what has been said, we are all in this together. Sometimes we just get in a dark place and we need to be reminded that we are all connected.

Hang in there.

Julie

[Jepster]

I guess the point might have been that if we don't use our bodies to do what we can whilst we can then the chances are we'll stop being able to do what we're currently able to much sooner than otherwise could be the case.

This doesn't mean that the MS won't get in the way and stop us being able to do it anyway, but it gives us the best chance.

No-one is suggesting that being in a wheelchair means that you didn't try your damned hardest to 'use it' whilst you could - probably by 'using it' then you delayed having to use a chair until now.

Maybe that's actually something to be proud of? The fact you did try your hardest?

I know how certain phrases really hit a raw nerve though. To me 'get a grip' enrages me more that I can rationally explain, mainly because the times I've had it yelled at me have been times when my grip has had to hold onto many things, the others of which were completely invisible in the situation.  

Jep

[Jepster]

Oops, you posted before I remembered i hadn't click send. I agree :)

[RedFlame]

I think 'use it or lose it' is a hurtful, blaming and cruel phrase.  People can't fathom the pain we are in, they don't want to know and they are afraid.  If we could 'get' MS then they could too.  They are afraid to soften themselves to comfort us.  They want to feel superior.

I get allot of stupid suggestions, drink this special tea, aromatherapy with certain essential oils, machines that are supposed to cure and psycho-immunology etc. etc.  

They can't fathom our pain.  

When I am able I drive into town.  I try to go in to one store each time, a small store like Walgreens, or a UPS store.  That's big for me.  I am doing the best I can.  

I am working at losing weight right now.  I am morbidly obese.  My goal is to get enough pounds that I can be on a horse again.  I won't be able to mount or keep myself in the saddle, but I could if I go to a therapeutic center they will help.


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.

Hugs,  Red

[Sarahsmom46]

I am trying to see where this post is going and if any of us really knows how to get to the hear of what Sumana is asking.  My 2 cents worth is that I'm not lazy - Period.  And, my deconditioned body is not the result of being lazy - Period!  I was always active before MS and try to stay that way as best I can.  I can't run anymore and walking is not much of a pleasure any more either.  For every day I try to recapture my former life, it puts me 3 days trying to recover.

So, Sumana, you asked if it is your mind (lazy arse) or your body (MS) putting you in that wheelchair.  The only person who can answer that question for you is you.  You and me and everyone else who responded, we each have our own unique relationship with MS.  I hope we all can find our own path in keeping us a mobile as possible for as long as possibl.

[Ufrustrated2]

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

BIG ditto

[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.  

[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.

[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

[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.

[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.

[twopack]

Thanks for letting us know more about how you feel when you hear these words.  We can only understand each other to the degree any of us feel comfortable sharing ourselves.  

I doubt any certain measure of sensitivity is required to be triggered by specific phrases.  It is common to humanity and develops from our life experience.  

Unfortunately, we are pretty much powerless to stop people from using phrases that trigger our anger.  Sometimes we can minimize our own reaction by recognizing what it is inside of us that raises a fist the instant it hears certain words.  Confidence in knowing who we are can make us less reactive about what others say or imply.  Sometimes it still hurts.

This isn’t about an opinion or who agrees with you.  It’s who you are.  I can respect that.  Unfortunately, there is no action to take or place to go that can guarantee freedom from triggers.

Mary

[Sumanadevii]

Thank you, Mary and I agree.  We each have issues that bring us the emotion of anger.  Have you ever watched another wife with her husband and though, "Hell, I would KILL (errr...a figure of speech) mine for saying that to me".  Yet it doesn't seem to bother her at all.  Anger is just an emotion.  It is no different than the emotion of joy.  Just emotions.  It is what we do with it that brings trouble.  There is nothing wrong with voicing anger.  We all have boundaries.  This issue is one of mine and obviously one a few others feel.  It is what it is..We are what we are...No harm has taken place in this discussion.  In fact, I think it brings us all to think outside our own box.  It has shown me how others interpret the phase.  I still don't agree and would still speak my mind but I have a different understanding of it.

Again thank you to all that participated.