A Rant !

stillfighting · Post by **stillfighting** » Sun Sep 26, 2010 4:58 pm

Kate CW, I have RR ms and I want to throw this in. My ms varies a lot. I am just pulling out of a year long flare that at times was so bad I could hardly time my shoes.
I can now ride a bike outside for a while.
NO marathons I should add and the good days and good hours come and go.

But, I still see people who have gotten through and are hardly touched by MS.
I fail to see how they were dx'd.

But, just for those reading............never underestimate the power of ms.. it can take the good away.
It's evil and I HATE it.Dance every minute you can..
I do get a little kick out of people who just assume that the drugs have "stopped" their ms.. the drugs did not and have not done that.

Wonderfulworld · Post by **Wonderfulworld** » Mon Sep 27, 2010 11:28 am

I REALLY relate to this thread.

I tire of reading stories about people who ski, jog, swim and "didn't let MS stop them". It makes it sound like those of us who can't walk just let it happen and didn't try hard enough

Well said, very well said.
I read those stories and think 'MS is still letting you do those things' rather than 'I'm so positive so I can still do these things'. What about all the positive people who are NOT functioning well.

A lot of people just want to see what they are comfortable with and they ignore the people with more aggressive MS. I hit EDSS 9 when I was diagnosed and it changes your whole life-view....it's hard to forget how bleak EDSS 9 was, I don't think I ever will. That said, I am EDSS 3 or so now, so I rejoice in every day at this level, but I agree with Stillfighting, MS is pure evil and it robs good people of their potential.

stillfighting · Post by **stillfighting** » Mon Sep 27, 2010 11:36 am

You can tell my brain is in high gear. I can time my shoes .................it should have been tie..
Oh well.. just another brain cell.

prauly · Post by **prauly** » Wed Oct 06, 2010 5:39 pm

Well, WifehasMS, your type of story is what has instilled fear in my since my diagnosis. I, too, worked hard all of my life and seem to have little to show for it other than the exacerbations caused by stress (mostly, from work). I have a wonderful family, but fear the potential financial hardship that MS can bring to the family. I have heard wonderful things about the MS society, but I still have yet to hear real-life stories that would encourage me to reach out to them for any level of assistance.

I, too, am frustrated with the amount of printed literature that seems to arrive in my mailbox on a daily basis. You and I share similar thoughts in that if they saved the $$ on printing this 'crap' then they could probably help more people in a REAL and effective way.

I can't say that I am 'jogging', 'skiing', etc....(not by far), but I am still able to work. Of course, I collapse at the end of the week and sleep all weekend....but that is another blog post!!!

Just know that I feel your pain, and your wife's pain. I'm sure that she is thinking that she is both a physical and financial burden (as do I). The most that I can suggest is that, as frustrated as you are, try not to let her feel your pain and frustration. I know that is difficult....just ask my husband! Well...hope that this helped in some small way!

stillfighting · Post by **stillfighting** » Wed Oct 06, 2010 9:04 pm

I hate to be a complainer.. but you would think they could at least put out a decent commercial.
Getting the general public informed, just how much money can keep coming from US and our families

We need people to understand this disease.
How it comes and goes and the effects of it.
How it differs from so many other things.
ETC ETC Happy Thursday Morning folks