Sometimes I think I'd like to live in an MS village or commune, at least for an extended vacation.

Yes, it's frustrating when "people" don't understand, but realistically, why would they? I expect my husband, my children, my closest friend to understand, but hey, I don't understand fibromyalgia or Parkinsons or all of the other various and sometimes rare illness that are around me.

But sometimes it would be nice to live where you didn't have to choose between "none of their business" and a ten-minute explanation. Where everybody just accepted as normal that:

If it's too hot, my brain, muscles and guts liquify; but if it's too cold, my muscles spasm; and there might only be a ten-degree gap. If I stand too long, I have to sit; if I sit too long, I have to stand; and "too long" can be ten minutes.

That sometimes I can't sleep and sometimes I can't stay awake. That sometimes I'm Pollyanna and sometimes I'm Scrooge. That sometimes I can drive and sometimes I can't; it doesn't mean I should give up my license. That sometimes I'm sharp as a tack, and sometimes I'm a slack-jawed blank stare. Both are transient.

That yes, you saw me outside pulling weeds on Tuesday, but on this day I don't have the energy to take a shower. That today I'm so lonely I'm ready to stop traffic, but tomorrow I might look at the caller ID and ignore you.

Sometimes I'd like to live only among people who understand that normal can change every fifteen days, and that often the change has no discernable cause or explanation. And that sometimes I want to talk and talk and talk about it, and sometimes I don't want to talk about it at all.

Of course, I know that it's a fantasy because (surprise) all the people in my utopian MS Village are all human also, and we're STILL not always going to get it. But it just seems as though it would be nice to conduct life where people nod their heads instead of looking at me funny, and I don't have to answer "what is MS?" Just for a little while. For a break.

I agree 110% with you, B2Y. I don't even understand this disease sometimes so how can I expect others who don't even have it to? This forum is the closest I've come to the perfect "MS Village". It's nice to be able to vent and discuss and even laugh with those who "get it".

Thank you, thank you, thank you.....I couldn't have put that better myself! I loved reading that - it just about sums me up through and through. I don't want to bore people with all the strange details (and take the risk that they wouldn't believe me anyway), but I am so tired of apologising for myself and my 'performance'.

We can't win - one of my colleagues told me that I work too hard at putting on a brave face, and I should let people help me when I am having a bad day, but as I said to her 'I would just bring everyone else down if I do that - it would get old very fast, especially if no-one else can see a problem.'

So, I would respectfully ask for a place in your MS Utopia!

Lyn

couldnt agree more. having someone help you now and again, isnt an issue, but that grows old really quickly and then you become the source of gossip or pity and then folks start avoiding your desk for fear you will ask for help, and they are also having a bad day. Then there are those that make YOU their misson in life. constantly showing up to check on you, or get for you, even on good days. ick!

I am so happy to be retired. that zoo made me crazy. now I just have to explain it to my cats.

Great idea Blessings.

My idea would be for all the *normal* people to live in a MS Village, where all the teachers, bankers, grocers...etc etc etc...all have MS and the normal people would then have to live at our pace..

Now that is a good idea, Sally!

I'm ashamed to say that I was probably one of the ones always in a hurry....never wanting to wait for someone slower than me....never ugly about it but still wondering "why are they being so slow".

Now, I've developed an abundance of patience for those folks who seem to be having a difficult time.....maybe walking slower than the crowd.....fumbling with things that should seem easy.

On the other hand, I don't have much tolerance for folks who are mean and impatient and seem to think the whole world ought to move at their pace or move over.

I don't know about everyone else but I feel fortunate to have been given the opportunity to slow down. I see things differently now. I react to things differently. And my level of stress is at an all time low. I guess I've just learned to appreciate what most people would consider the "little things".

Thank you B2Y! You said everything I feel soooo perfectly. This forum is MY MS village. I don't say much but it's a place where I visit daily and feel soooo close to people like me...people I don't even know. I feel so oddly connected. Sounds strange, but there is understanding here...everyone here knows what everyone else is feeling...something I don't get from my loved ones...how could they know.

When I'm being rational and fair (I have my moments) I realize I often don't really understand things I've never experienced.

In other words, Kicker, you understand that they understand, that you understand why they don't understand. Right?

Of course, I didn't say everybody in my ideal little village would AGREE on everything...or even get along...but at least we'd understand!

You know, it mostly doesn't make me angry or frustrated when it seems as though nobody understands...it mostly makes me sad. Maybe that's why I like the fantasy village. It's a whole different kind of lonely when you feel that you can't make anybody understand what you're talking about.