Restless Legs Syndrome (RLS) Discussion Board

If someoe is talking aout things they wil frequently being hear to say, "I don't know how they can handle/do that cause if it was me, I could never do that."
Are these people likely just being empathetic or do they usually mean just what they said--it would be intollerable for them?
We hear this expression frequently in my experience but I also find that those same people seem to expect us to deal well with that whic they say they never could. Thus the post. I know there are no certainties and some will mean one thing while others mean something different, but when it comes to the really bad stuff like lacking sleep for days/weeks with little hope for constructive change--I've assumed them to be serious.
What is your experience?

rthom wrote:If someoe is talking aout things they wil frequently being hear to say, "I don't know how they can handle/do that cause if it was me, I could never do that."
Are these people likely just being empathetic or do they usually mean just what they said--it would be intollerable for them?
We hear this expression frequently in my experience but I also find that those same people seem to expect us to deal well with that whic they say they never could. Thus the post. I know there are no certainties and some will mean one thing while others mean something different, but when it comes to the really bad stuff like lacking sleep for days/weeks with little hope for constructive change--I've assumed them to be serious.
What is your experience?

Don't let it get to you. I have found that 99% of others without this condition of RLS/WED have NO IDEA how bad it really is. You can't really walk in someone else's shoes.

Thanks for your response, but I'm ok with the lack of understanding. I'm just trying to figure out whether to take their word for it or if they are just giving compasionate lip service. (well intentioned support--that kind of thing)

I generally take someone at their word and assume that they do mean it when they say that 'they couldn't do that'. The 'think' they couldn't do that.
However, when faced with the acuality and there is no choice, then most folks do what they can with the hand that they are dealt, and really 'can do that' and deal with the issue whatever it is, because there is absolutely no alternative.

I think mostly people are in genuine awe when they say things like that, because they don't realize what an awful lot the average human can put up with if s/he has to, as PB just said (such a strong instinct to survive).

But when they expect us to handle it well, that's because 2 seconds later they have lost that "aha" moment of awe and are no longer actively imagining the agony. It's hard to sustain such a thing in your mind.

That's what I think, anyway.

Interesting posts.

My hubby has celiac. If I've heard one person say, "Oh, I could never live without my [insert bread, cake, cookies, etc.]," I've heard it from hundreds. We participate in local support groups, too, and he is the "new product" specialist for one of them, so we sometimes talk to many new celiacs each year.

Most can, and do, stop eating gluten when they need to. We do see a small percentage of the newly diagnosed who really can't, though. Some keep cheating and having some gluten now and then and are sick. Some of them have to be hospitalized before they stop for good. Some aren't symptomatic, but damage is being done, so they end up with cancer and either die or have to go through surgery and chemo before they stop.

So, I think it's pretty complex. I do think most really do mean it when they say it. To them, it's beyond the limits of comprehension.

After my second daughter was born, I had an awful time sleeping. She had reflux, so she was up every 15 minutes, literally. Then I also had untreated RLS and sleep apnea. I was worse than tired, I was obliterated. I often say when talking about that time in my life, "I don't know how I did it." It's just an acknowledgement of how much I had to deal with and how much I am able to take for granted now, and I think people mean it like that, as an acknowledgement that they understand that you have a lot on your plate (even though they don't *really* understand the extent of it, IMO).

rthom wrote:

I don't understand this, but it's making me yawn!

means it's something for me to think about--and I'm too tired to figure it out right now--lol

Chipmunk wrote:After my second daughter was born, I had an awful time sleeping. She had reflux, so she was up every 15 minutes, literally. Then I also had untreated RLS and sleep apnea. I was worse than tired, I was obliterated. I often say when talking about that time in my life, "I don't know how I did it." ).

So, here's the question, we have times in our lives like this and frequently it's when younger--do you think it can be re-done as needed or is it too much as we age--tire out etc..?

Yes, I think it can be redone regardless of age because it must be done - there is no choice, there is no alternative. It's just like keeping putting one foot in front of the other, never thinking of more than the next step. Every journey starts with one step.... etc. etc. etc. etc. and so it goes on... and on.... and on......whether it be lack of sleep, seemingly unbearable symptoms, exhaustion.......

Sounds like this could just go on forever dragging down more and more etc...I'm not sure it's good news--awesomeness of the human body/spirit--but not always kind or what one may hope for.