So @ work to day i think chiari decided to show itself. I was on the computer bein trained and all of a sudden i had a phase of pure blank..i was bein told wat to type and my hands did sumtwithn else.. it kept happenin and it put me in pure agg status.. here i am @ a new job wit my new found fren(chiari) and this happns..my trainer laffed and sed it was ok...if she onli knew how not ok it was :(...i cant evn really put into words how those moments which i think was abt an hour long made me feel..betwwen that the "water sound" in the bck of my neck and my right ear poppin wen i chew i jus kno this is not where i wna b in my life @ 28....so frustrated..but cant get too frustrated or else here cumz the ocipital n neck headaches...smh..help!!!
I completely understand how you felt. It's really hard and frustrating. It is good when the other people laugh it off. But like you said if they only knew what you were going through and why it was happening.
That happens with my speech all the time. I work in a hotel, so I'm talking a lot. I can be in the middle of talking and my words get messed up or for some reason I start repeating a word over and over and can't stop or shut myself up. It is really annoying. More annoying when the person on the other side is looking at me like I have 3 heads.
Jae,
I’m sorry you had a rough day:( It is amazing how many ways Chiari affects us. It is very frustrating! Like you said, we can’t let the frustration and stress get the best of us, because that just makes our symptoms even worse. Again…very frustrating! I was an Office Manager for a Pediatric Dentist and I had to step down because I couldn’t handle the long hours and stress. I know this may not be an option for you, but if possible, try to cut down stress in your life in any way you can. I know this is easier said than done. I also take anxiety medication when I feel my stress and anxiety getting out of control. It does help some.
Have you seen a NS that specializes in Chiari yet? I’m sorry…my memory isn’t very good. Another joy of Chiari:/ I’m sorry you’re going through this, but I’m glad you’re here. If you ever need to talk or vent, you can message me anytime…I’m a good listener:) I hope tomorrow is a better day for you:)
Crystal
Jae,
You are not alone. I had a very stressful job with long hours, add to that life stressors that were overwhelming and it almost killed me! Only a few people knew the struggles I had due to Chiari, and it is just NOT something everyone understands- so we keep quiet and deal with the ugly symptoms. So I made changes- I quit my job and moved away from all the stress for 8 months. I am happier and healthier as a result. Healthier than I have been in 5 years! Not everyone can do that though, people thought I had lost my mind, but my health was more important. Even my doctor can not believe the difference in me today. I have found that Chiari is opportunist- give it an inch and it takes and takes and takes. When I have moments such as yours- I have to regroup and get my anxiety under control. Excuse yourself and go to the restroom. Take a few deep breaths or just take a moment to let yourself rest without anyone watching you. Stress is just what Chiari thrives on. I wish you better days...and like the ladies above, I am also a good listener. This site has been a godsend to me.
i would say frustrating is the nicest word for cm. i had 2 symptom's (hard time swallowing & couldn't talk much louder than a whisper) that could not be explained for 1 cause i refused 2 go 2 the doctors, (thinking it would go away) 2nd. when i finally did he couldn't figure it out. he wanted 2 do a exploratory surgery on my throat in Jan. 2012.. December 2011 i was ending my shift when cm started 2 really show its ugly face, (at the time i didn't know what it was) About to leave work when my i started acting stupid, i chucked it up 2 either i was tired or some thing got in my eye. the drive home was qite interesting, luckly i live close 2 work. Sunday i had 2 go 2 work and my eye was still acting stupid so i had my wife take me 2 the e.r.. after that i had 2 see an opptomaligist a NS and 3 MRI's later the NS told me i had CM & SM. Merry F in Christmas 2 me and my family.. i had surgery Jan.17 2012 and am still recovering. now its a wait and see game.
is your NS familiar with CM? if so do you have a surgery date?
you have found the right site 2 be at, if you want 2 vent or ask any questions this is deffinetly the place 2 be. every 1 here are very help full and insitefull, and know exactly were you are coming from.
good luck and welcome.
chris
Jae,
Sorry this started during a training for your new job :( It's definitely a frustrating and aggravating symptom. My kids laugh at me constantly when I mess up my words (in a good, laugh WITH you kind of way). The symptom itself has actually made me very withdrawn when speaking with other people, even friends. I used to talk to everyone, now I say a few things and then keep quiet. You certainly came to the right place to get the support for this stuff.
hope today is a much better day for you!!!
Kellie
hi Jae...
I can completely understand where you are coming from!! Looking back at my own history.b4 I was diagnosed with Chiari..I would get this look like "lights on..no one is home"....I too, at that time , had just started a new job...which required some paperwork...Oh ..it was awful..once a great speller..suddenly I could not spell..my co-workers would remark at all my errors.
That sound you are speaking...knew it all too well...thank God that has gotten sooooooo much better since surgery..I had in 08.
Where are you at now in the process...are you set up to see a neurosurgeon??? Let us know what is happening...we all get it...that is for sure...
Hope today is better.
Peace,
Lori
Thanku ery1 for ur kind words…im def in tears feelin a feelin that my frenz or fam cudnt provide…i see a NS who have dun many of these chiari surgeries…i dont have a date but my bday is in may and my sons is in aug…so i thnk i may do it then…i cant jus do it now bein i jus started this job and i like it…i wna b ablr e to take off and come back…dno the chances bein im a temp…but my health def comez 1st…