MS Brings on the Advice

Mandy, but didn't you know?  Everybody's an expert.  Those with MS, those without MS.  Those who know something about everything, and even those who think that "they" just don't want you to know the secrets of self-curing. 

I guess that makes me an expert.  However I'm the researching type who upon learning a new tidbit must allow it to find its own place in the puzzle.  It's a constant construction, deconstruction, recostruction process.  And if I can't convince you of that, then I've got to tell you about the neighbor of my greatgrandfather whose niece knew someone atschool who predicted that drinking arsenic-laced spring water would cure the measles.

I hope that helps cause we were talking about measles weren't we?

,sometimes having to reconstruct step back and allow it to .

Hi Mandy---

New blogger here.  But not new to MS.  Since my family and friends are not reading this, I can unleash:

1.  My mom, a very optimistic type, sometimes tells me to "buck up" and "think positively", when I am so down in the dumps over a relapse and having just gotten laid off again.  Thank goodness my neurologist understands that MS depression can be organic/from the lesions, from interferon use, or situational (dah!)  He prescribed me Lexapro for anxiety/depression a little over a year ago, which I got off of for about 6 months, until this recent relapse and loss of work.  Plus the craziness the steroids cause.  But my mom still feels that if I am just positive and count to ten, I probably wouldn't need the Lexapro.

2.  Some of my friends and my sister-in-law seem to think MS is like the flu, with sickness for a while, then full recuperation.  They don't grasp the magnitude that every time there is a relapse, there is a chance for further nerve damage and more disability.  Relapses=further damage.  They don't seem to get the magnitude of taking steroids, and how absolutely sleepless and kooky I get.  Again, back to Mom and her advice to have some warm milk or take a hot bath.  I need Klonopin!  Ambiem CR stops working after a couple of nights.

Just had to vent and maybe feel understood.....I personally know 2 people with MS and one is quite a bit worse than me and the other has had "very mild" MS for about 25 years (only 3 attacks!) and can't quite relate.

Sincerely,

Jen at www.msfriend.com

The advice I can live with, what gets  me is when I don't appear appreciative--they get mad at me, like I don't care enough to make my MS go away. Grrrrr PS: Try kissing a frog, I hear the MS goes away! (But when you stop kissing it the frog gets the MS back...)

Hi Mandy,

You have done it again, hit the nail on the head, I mean. I take my scooter on the NYC buses pretty often and I am always amazed at how many people take this as an indication that they can now ask me personal questions, tell me what I should be doing to feel better or be cured, comment on my lifestyle, and yes, sometimes even tell me that I must be in remission, couldn't really have MS because they know someone who does and I look much better than she does, or decide that I did something to cause it.

Sometimes I wish I had the same feeling of entitlement that they must have and say exactly what I am thinking in response to these questions or comments.  Instead I usually take out my book, make up something about having to finish it for my book club meeting and tune them out.  Most give up but occasionally a person just has this moral obligation to tell me their thoughts about my health, my life and how to fix both.

Keep up your sense of humor, we all know that is the only way we'll get through this. And thanks again for discussing an important topic.

Hi Mandy.  Great post.  Looks like you struck a chord with lots of folks.  I have two thoughts:

-- people like the sound of their own voice

-- people are uncomfortable with silence

That is why people seem to always have somethign to say - even if its not appropriate or wanted.

Thanks for all you bring to the community. 

All the best, sue

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