Heather, at the risk of sounding rude and intrusive here, I would suggest you get honest with yourself and all your loved ones around you and then become transparent to everyone... that's how I've dealt with it. After re-reading my own post before this one I realized I was wading thru another funk then... they're gonna happen, you just keep wading and you'll get out.
Correct me if I'm wrong but it sounds like your husband loves you very much which is such a huge blessing when we feel like such a failure as a wife and mother. And the best part is that you've been given this man for such a time as this for YOU! I don't know where your faith stands but it sounds shaken if you have any, and I'd recommend renewing that and seeking peace with Him over this too. You sound angry and frustrated and rightfully so, we all are at some point but instead of letting this disease destroy us, we figure out how to cope daily and move on.
Consider your alternative to everything in your life relating to this disease... if you let it beat you, what have you accomplished? If you don't do anything but stay in bed, what have you taught your children about handling adversity? If you handle this with total pessimism what are they learning and what does anyone else gain from knowing you or loving you thru this? What do you gain from any of that self-destructive behavior because the disease limits you?
It's like if you suddenly had a car accident and found yourself a paraplegic. Would life end? No. It would only end as you knew it. Now you would embark on a new life of learning how to cope with your limits, with the pains, with the meds, with the exhaustion, with whatever is happening to your body. That's how I figure this, only folks can't see it and that's our challenge.
Yeah, I get tired of the curious questions and I cut it short sometimes when they come back with "but I have that too" or "you poor thing" ... I don't want pity, I don't want discounts, I don't want any sad eyes... understanding when I'm not somewhere they want me to be part of, or when I say No, I can't help ya out this time, or sorry but not a good day today... but no pity, no poor Debbi stuff... and many say, "but you're still smiling!" And I reply, "what good does anything else do?"
So, Heather and everyone here, I apologize in advance if I've overstepped my boundary here but it grieves me greatly to hear the suffering in your post. I know it hurts, it's bad, it's heck to live with and I hate it too. I remember my body when I was friends with it and liked it. I remember the days when pain was not my constant companion and an array of meds not my regimen. But this is life now, and I accept now because such is my time. My husband is a wonderful man (like yours sounds like) and he's told me time and again, just tell me so I can understandl. Believe me, I am only HALF the wife he married and he so deserves more! But he says he's got it all with me just like he fell in love with and I"m sure yours agrees...
So embrace what you've got Heather, take a deep breath, smile, deal with one day at a time, one step at a time, find your limits, get your coping mechanisms and skills in order and enjoy now. It's all we've really got that we can count on.