So, all week long I was looking forward to the once a month girls night in at a friends house. I left the house at 530 and had to have someone bring me home at 800 because the pain is too much right now. I’m so mad that my doctors nurse never called me with any information regarding my neurologist appt. She told me to give her 2-3 days and I called today she wasnt there.
I am trying to stay positive, but I’m so frustrated right now. My husband appears to be sick of hearing about it (even though it’s probably just me sick of talking about it).
I had to say goodnight to 10 really nice people because I couldn’t take the pain. I hate it! I hate it!
Hi Kismet,
It's a rotten, miserable Disorder. I hope your Friends understand. For the time being, maybe you can arrange to meet several at a time between gatherings. Good, caring Friends will do all they can to stay in touch and comfort you. Some of your friendships will deepen because of your misery. Keep on hating it, just don't let too much negativity make you feel even worse.
Read some of the postings from our site to Hubby. Sit him down and quietly express your feelings and frustrations. Allow him to share his feelings. If he can't deal with it, tell him you'll find a new Husband on E-bay.
I can empathise with the husband seems to be sick of hearing about it. A few times my hubby has lost it at me a bit, saying all I do is complain about everything (not just the TN), that he has been doing housework he shouldn't have to do(!) just to help me out. He even went as far as to go that I never thanked him for "using up his sick leave" while I was in hospital and that I never thanked him for coming to visit me!!!! Excuse me?! Isn't that what a husband SHOULD do?!
*sigh*
Maybe they can form their own support website for disgruntled hubbies! :P
Had to laugh at the “find a husband” on eBay comment.
Sometimes I feel like a few of my friends get annoyed by me talking about it, too. I don’t think they understand, so I tell them to look it up. Other times they look at me in disbelief on how painful it is. TN has brought me to tears more than I’d like to admit, but I try not to cry in front of others.
If my husband knew how to use the computer I’d send him to this site. I’ve shared with him some of the stories from here. I don’t know how to make him relate to it because he’s not the most sympathetic person.
Most days I’m pretty upbeat and I try to stay positive - but sometimes I can’t help it!
Yes, that is what a husband SHOULD do! In sickness and in health! I love when my husband feels He deserves an award for doing things to help me or the kids. I thank him often and try to everything I can - but sometimes I can’t. Lately he’s been working 12-14 hour days and on the weekends. I know he’s tired. I do.
I’m sorry to know exactly how you feel! I wouldn’t wish this on anyone.
Porcelina said:
I can empathise with the husband seems to be sick of hearing about it. A few times my hubby has lost it at me a bit, saying all I do is complain about everything (not just the TN), that he has been doing housework he shouldn’t have to do(!) just to help me out. He even went as far as to go that I never thanked him for “using up his sick leave” while I was in hospital and that I never thanked him for coming to visit me!!! Excuse me?! Isn’t that what a husband SHOULD do?!
sigh
Maybe they can form their own support website for disgruntled hubbies! 
Hi it is horrible I don’t go out unless with my closest friends as I two have had to come home when going out, I don’t eat out anymore either incase it triggers pain , I try keeping positive but it’s hard try one enjoy the pain free times u have x