Whose the Blame

[Sumanadevii]

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

[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.

[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

[Jepster]

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

[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

[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

[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