I am Afraid!
I am afraid! I fear going to sleep because I know I will dream and my dreams become reality. I am trying to explain to a doctor that I cannot breathe -- he is not understanding me. I awaken in a blind panic, my dream is a reality. I rush through the house to find a warm compress to put over my nasal area to release some of the congestion. I also put saline drops in my nose. I am short of breath and I am afraid. I take a valium to calm my nerves. It takes about 20 some minutes to take care of all of this and then I have to try and get back to sleep for work will soon be here. Please, I know we all have different symptoms, but is there anyone who has experienced anything like this. It is extremely frightening, especially when you realize that you really can't breath :? :cry: :evil:. I'd like to hear from someone with a similar experience. What has this doctor done to me. I wonder -- does he even know. Thank you.

I feel your pain and I wish I could help you and others.I have no clue what to say and what to tell you to do other than try to relax and not your anxiety/nerves get you going even more like I use to

try to tell yourself hey this is the way it is now and it might get better it might not..shoudn't get worse

I'm afraid
Dr. Houser says doing my right side should help so I am trying to set that up for the future. He can't say for certainty, but if he thinks it will work, I'm all for trying it. Not being able to breathe properly is a terrible thing. Valerie

When it gets that bad for me I also get a constant dizzy spell that makes things so horrible. I feel for you val I wish i had a better answer.

My soon to be ex-boyfriend and my family say -- "Well at least val you are not blind with cancer". I can appreciate that and I'm sorry for all of those that are. But does that mean we should therefore be able to cope with our disability because it's less severe :?: I don't know, not being able to breathe is pretty severe, wouldn't you think so? I'm confused. I just feel they can't see that there is anything wrong with us, therefore there isn't. :cry:

pain is pain, once you start comparing one type of pain to another their missing the point. Suffering is still suffering regardless of the level. No person has the right to devalidate what anohter is feeling. If you were blind with cancer theyd just tell you at least you have your legs, arms and ears.

Val, People can't "feel" what your going through, so thats why they don't understand. If they went through one just day of ENS, they would completly understand it, and never would forget. They would have so much empathy for you. They only know of the complaints you give, and no one can use logical to understand something they've never experienced. Imagine how good their nose feels when you tell them about your ENS, they feel good when they try to imagine ENS, therefore they can't get the right message of how much suffering your going through. Its like, when your suffering a lot, you can't even imagine that life could be enjoyable. But when your the happiest, you can't imaging suffering could even exist.

Anthony's right. It is crazy that this can't be communicated. I don't think it's less suffering than anything else. I am 56, I have given birth naturally twice, and this is the worst suffering I have ever experienced. Others may, but don't you belittle your suffering. I think that diminishes self-esteem on top of everything else. You deserve to feel good about how well you are coping. There is nothing minor about this pain. At least we understand.

Val, Hey, I really think I have the same symptoms as you, but not as severe. You were genius to think up the compress. I know this is wearing you down after almost a decade, and obviously your support system - family, boyfriend - are not doing their job fully. Think about it before moving to NC for that reason, because being around negative people will only make it worse for you. My family is extremely critical of me even when I succeed, so I know not to let myself turn to them much when I am actually suffering. This may be the most support you can get here on the forum until you can find friends who understand, and a boyfriend who gets it. Please please think of talking to a psychologist before you make another stressful change by moving, after the breakup. That is going to be overwhelming. My psychologist is used to dealing with people with chronic medical conditions, chronic stress, chronic family problems -- I swear I would have made so many mistakes had it not been for her kindness and acceptance of the many painful things in my life. I was starting to just believe all the negativity around me, and the blame on me. I really understand how you might feel....promise all of us you won't blame yourself, you will only talk to people who are supportive and believe you about this? Otherwise you are on a fast road to depression.

Val, Please don't take my advice if it does not fit - I only am imagining myself in your position, and I just want to offer any ideas. I have no stake other than hoping for your well being! It said in your profile that you were in NY. If you're in NYC, I'm here too if you ever want to talk, and also I wanted to give you the info of my psychologist. Please don't take that the wrong way, or think I am being presumptuous! She is just a big help to me, and I almost made some huge decisions/mistakes out of hopelessness before I had her guidance (breaking up, moving, etc). Her name is Debra Lawrence and her number is 212 414 7765. She is so understanding of ENS and how chronic conditions wear you down. Keep up your spirits and don't listen to people who are not sympathetic!!! Instead get online here, just don't give in to believing negative people! Erika

Val are you on a sleeping pill....if not try ambian before bed.... it knocks you out and those dreams dont occur....

Dreams
persist829, I take ambien almost every single night; sometimes it stops me from having bad dreams, but it very rarely lets me sleep through the entire night. Maybe I am immune to it. If I take it at 9:00, or 11:00, I will still wake up about 3:00am and then its a fight to get back to sleep, what with all the pnd, snorting and what not (lol). Valerie