I resigned as baseball coach for little league (I coach my son's team and have for 3 seasons).
I had to back out of a going to a Van Halen concert today - where I had front row seats.
The first one hurts the most. I cried when I wrote the email. Baseball is my life, coaching kids a sport that I love as much as I love my son and seeing the looks on their faces when they 'get it' and watching them develop their own love for the game was/is something so amazing I can't put into words.
But I can't do it anymore physically. Practices this past week were so difficult. My head was just pounding, I was so dizzy, I can't hear the kids like I used to, and at one point I was standing there looking at one of them totally knowing what I wanted to say to him but my mouth just would not cooperate and nothing would come out.
Yeah....I guess I'm depressed. I hate feeling this way.
I am tearful reading your post.....your feelings are normal....sounds trite...I certainly don't mean it to sound this way.
Your lifestyle (for now, anyway) has changed..that is depressing ....You took a huge step in sharing this with us...my 2 cents..anyway.
Have you had surgery?? If so, when???
There have been many times when I just gave up hope...then it hit me.....Don't ever give up hope....better days will come...that is my prayer for you and all of us here that are dealing with this crap.
Thank you for your post. No, I just received my diagnosis 2 weeks ago from NL. I see my first surgeon on the 19th. I say first because in all my research I'm seeing that it may not as simple as the first visit.
I don't know who to talk to. No body seems to get what I'm feeling, and quite honestly, I'd rather not burden them. I mean for so many years I've lived with it in silence thinking I was crazy. But now that it has a name I just want to burst at the seams, run to the top of a mountain and yell "I'm not crazy! I have Chiari!" But then..well, I'd actually appear crazy. Ha.
That being said, half the time I'm not sure what I'm feeling myself. My head. My god.. this morning was bad - it just doesn't stop pounding/pulsating. I just want to cry, but I won't allow myself because crying physically hurts. My neck, so stiff. My balance, so off. My hearing, so gone. My memory, so screwed up. My speech, so jumbled. My mood, so crappy.
100% truth, I have no idea how I'm going to keep my head up (pun intended) through this. It's so much worse these past 3 months than ever and I just want to give up. I gave up baseball. Wtf am I going to do now?
I can totally relate, I too have had to give up going to rock concerts because after decompression my head cannot take any loud music or noises, and this really sucks. At least I went to many concerts in my youth and will always have those memories, and I can still watch special concerts on HBO/Superchannel, where I am in control of the audio levels.
I will have to be on my deathbed to miss the Real ...Van Halen...with David Lee Roth (I have seen them many times in the 80's but I have missed them ) & I have already bought tickets to see Queen. I have lost almost everything, but I cannot give up my music. I used to play in orchestra's & can no longer do that, so I hope God gives me a break on the concerts. I saw Train, Gavin Mc Graw & Maroon 5 this past Summer and it was Unbelieveable!!!!
Tracy, I thought about going up until the last minute, trust me... I didn't want to end up being a downer for the rest of those who were going. I know, without a doubt, my head would feel on the verge of explosion since that's how it's felt almost non stop the past 3 months. Add to it the dizzy spells and my half deafness, things just wouldn't have been a good time and everyone would be more concerned with me than having fun. It was best to back out and hope I can try again later, someday... I hope.
Lori, thank you for thinking of me. I'm not doing well really at all. I'm just so - tired - in every sense of the word. I hope you all are having a good weekend though, and are able to relax some. :) I'm very glad I found this site.
Sue....I am glad you found this site too...you are a super addition!!!
Listen to your body..curl up on the couch and rest...please be sure to keep a close eye on your nutrition and fluid intake. I am the worst at that!!! That is why I mention it to you...not eating and drinking only makes the weakness worse.
So sorry today stinks as well for you....better days are coming. Hang in there.