I too agree that it helped me see how supportive my family can be for me. It also showed me how strong I can be. If you can live with this, you can pretty much beat anything thrown at you. Everyone has their bad days with this, but you will find this site to be a great help to just vent or get answers to questions you have. Doctors sometimes can't be as supportive or knowledgeable as the ppl on here who live with it everyday. I wish you luck. We are always here.
Greetings Christine,
One good thing that has come out of this monster for me is that when I was having my worst attacks (the waking up screaming and pounding my legs on the bed) that came in the middle of the night ones. My wife instead of saying go sleep in your in your recliner, she would reach over and hold my hand until the attacks would end. No words would be said, but volumes of comfort and love were present! She didn’t know how the attacks felt (thank God) but her touch eased the pain. So the good thing would be that I know that she will be with me no matter what and can always ease the pain. My true soul mate.
Scott
Scott
My husband did the same for me. Holding my hand during the most dreaded pain spoke volumes to me of his devotion. He never left my side during MVD surgery and the subsequent I&Da month later. It meant the world to me. It was a blessing. I hope you are not having those pains now.
Mary
Great words Shindig, good thoughts!
My good stuff is this caring, sharing, kind group. Every time someone is in severe crisis and asks for help here, I am overwhelmed at the outpouring of love and compassion shown to said sufferer. I have cried with happiness many times at the kindness you guys show to one another. We must not forget, if we who know this suffering, cannot be kind, how can we expect "ordinary" people to.
Mary,
I am not having those kind of pains now, I hope you and all others are free from them also. thanks for asking!
Shindig,
Those are awesome goals you have set, I hope you can achieve them soon.
Jackie,
I am sure your message is shared by many others on this site, I know I do. Your last sentence is very profound and should not be forgotten, I know I won't forget.
Jackie:
It is so true. Any of us who have had the excruciating pain will read about the pain others are suffering with lumps in our throats and tears in our eyes and most of all a prayer on our lips for them.
Scott
I have not had the painful episodes since my MVD on 7/11/11 but do have little shocks now and then that don’t amount to anything, thank God. I take 200mg of tegretol at night…still. But seems to help. I am truly thankful for the relief.
Patience. Waiting for someone who is hurting, or needs to speak or move slowly. Understanding that when someone says they are in pain, they really hurt! I have always been compassionate and empathetic, but now I am more so.
Do people understand when I say I need to stop & rest in a quiet place? No. I LOOK fine. But maybe I finally understand when people say it to me.
Best wishes to you.
Hello, I have thought about this many times. I’m not one to feel sorry for my self, nor blame others. But I must admit to asking ’ why me?’ I have 9 brothers & 2 sisters. My mother said, ‘she just could not understand, why I was so sick? When my brothers & sisters had always been so well. I just said, ’ maybe I’m be punished for being the good looking one!’. Lol! But seriously, this is a condition that takes its toll on our lives, be it work, relationships, social, etc. I don’t have an answer, but I bet at some time, every single person on here has felt the same. Maybe, this is doing something good. Maybe I’m destressing just telling you this. Maybe you are getting comfort from this? Knowing that you are not alone makes it easier. Even if it is just a little. Hugs Sally
Yea, you guys are right. It just plain sucks. My face hurts all the time. But I will not let this dominate me. I will not BECOME TN. I will still be me, an artist, a teacher, a mom.
I still like what Jackie said... if we who are in pain all the time cannot understand when others are in pain. Who can?? Well.... she put it more eloquently. lol
The only good things about this disease is that it can change your outlook on things. Make you grateful for the good days and make you have an appreciation for others with "invisible" diseases. That is all I can find that's good about it.