I think one reason our friends and family may struggle to understand our illness is because there are no outward signs. We look perfectly normal/healthy. They look at us and don't see the pain inside us.

Also, because our pain is invisible, perhaps we try more so to inform others that we are indeed sick, and unable to do some things. This is true for me. I'm constantly having to remind my family that I'm in pain. Just last week my mother suggested a trip to the shopping mall, a huge multi layer, hard floored torture chamber!

It's this having to remind them over and over that forces me to talk about my illness more than I would otherwise. Perhaps as time goes on the people in my life will remember, then I can stop constantly reminding them.

Be careful though, your husband has a point, unfair as it sounds. I chose my mother and brother (and this forum) to vent my frustrations, chat incessantly to, about my pain. In this way, I've been able to spare others from the boredom. If they ask, I try to keep my answer short and thank them for their concern, then ask how they have been doing so as to turn the attention away from myself. It takes some practice and a ton of self control.

I believe you are new to all this. Talking constantly about it is part of us processing what has happened, and to try finding answers. (I still talk too much about it after a full year).

I try to remember that family and friends are not Doctors or Therapists. They are not educated in the art of pain empathy. It wasn't that long ago you and I were just like them, oblivious to chronic pain.

TRUE!!!

Same with me.

LOL (sorry)

I also experience this. People around me invite me to do things and I have to say "Thanks but I can't". I can't plan anything without the right to cancel, even at the last minute. I actually tried to keep my PN a secret but that has become very difficult.

I also need to remind myself of this. Thanks

Another annoyance for me, two actually, is that I have lost a lot of weight over the past two years. I am 6', my normal weight was 175lbs but now I am 145lbs.

I hate when people jokingly say "You're so thin. I wish I could get neuropathy!"

This just reminded me of a similar incident involving myself and a step-cousin, before I had pain. She has always been thin due to some condition she has which won't let her put on weight. One day I joked about how I wish she could be contagious and give it to me!

With patience and calmness she explained to me that malabsobption is not all fun and that she was experiencing pain. It was not long after that she was diagnosed with MS.

I remember the innocence by which I was joking, with no malice or understanding of her suffering. She handled my joke with such dignity. Now, when someone jokes about how they wish they could get my illness so they can find an excuse not to work, I try to remember they are innocently joking (mostly) and I strive to conduct myself with the grace and kindness my cousin showed me. I strive to be like her, an uphill battle, but worth the climb.

Definitely worth the climb. Thank you for sharing that story Debbie. It inspires me also to want to strive for kindness and patience in place of anger and bitterness.

That has been my battle this year. I turned down a promotion (which was since reoffered and accepted) because I was in a real bad place at the time.

I was around 50 pounds heavier last year at this time, so I get plenty of comments. A few people who think beyond the quick quip have inquired if I am okay, though mostly it is of the "looking good" variety. The whole time I would love to swap look with feel. Bring on a Quasimodo look and a 59th St Bridge Song feeling, I say!

I needed my "meltdown" earlier this year. I'm not proud I behaved in the manner I did (bitter- shaken, not stirred) though I have grown in ways that might not have been possible otherwise.

It is ok to fall. It is important to get back up and attempt to go around what tripped you up beforehand.

I am thankful that those I may have snapped at understood, I think. I'd love to try and explain to them that while I am sorry I may have acted out I am not sorry it happened. I grew from it.

"Why do we fall, Bruce?

So we can learn to pick ourselves up."

Jon

I'm not at all violent but I would want to punch someone if they said that to me! Not that I ever would. Knowing myself I would probably just smile and say nothing.

When people ask me how I feel, I always say I'm doing ok. I seem to always get " well you look really good." It makes me feel like I should defend myself. Not that I want to look bad. I wish I just didn't care what other people thought.

I have a friend that told me she is in pain everyday with her RA but she still works. It makes me feel like crap! She recently developed neuropathy in her feet. She told me it keeps her awake at night. I told her what she has in her feet I have everywhere. I know she doesn't believe me but oh well!

Yep that was what was making me upset so much, the hoping always ruined by new symptoms. I have found closure now after 7 years of PN and what a rough journey it has been.
I have gone from being very suicidle for a number of years to completing in the last 14 days a criss cross journey across Thailand and parts of Malaysia by Rail using sleeper carriages and lugging a heavy bag that also contained my CPAP machine and battery, yes i have sleep apnea as well!

With acceptance comes a new chapter of life where the spreading of the disease becomes a minor annoyance rather than a complete focus at the expense of everything else.

Here is the deal, when I travel I hardly notice the pain at all and the excerise really does wonders for minimising the pain.

Like others I play video games except I focus on a home flight simulator that keeps my mind active and Im busy for up 12 hours during simulated flight in a Boeing 747

Remaining idle and focusing on the pain is a fast way to an early grave so I try my best to avoid that

Yes, I find fighting dragons keeps my mind off the pain, so I play video games every day whenever I'm alone.

I find what you say about excersize doing wonders toward minimising pain interesting! Do you think it's the fitness helping the pain, or the endorphins released when we excersize? I'd love to hear more about how excersize has effected you.

Just this week I purchased a recumbent bike in an effort to increase fitness, as my blood pressure is starting to creep up. If this bike will also help the pain then I'll consider it the best investment I've made in a long time. Getting quite excited now to see if it helps.

I haven't been able to walk much since spraining my ankle but generally I find that the pressure on my feet and legs while walking seems to take away the pain, or at least being outside distracts me enough to forget it for awhile.