Well this past weekend(saturday) we went to a fair. I felt really good...not 100%..but 90's and climbing. I felt free and happy. I actually felt well...with dizzy blips at the fair. Then this week, my cold got worse..and I got less sleep...

I went to another fair with my parents and sister's family...blam...I felt terrible. whirry, floaty, weak legs...could barely keep up a conversation.

Honestly, I told my husband...these past 13 months have been the most difficult in my life. This is a cruel illness. I think I am coming out of it...then get slammed again. I have done all the vrts religiously...but still deal with this crap 24/7.

I am tired, and sad today. I try to be positive, upbeat...strong. Today, I folded. My daughter turns 1 next Friday...and I have had this illness everyday since her birth.

All I want to know is that I will be rid of this some day. Called my PT he said "well I can't promise you that you will be 100%"..."lets order an mri". I just am down. If someone would have told me a cold would have affected me so...I would have not believed it. I told my husband, I don't know how I can continue like this if it lasts for the rest of my life. I am so ill when I do get slammed...it is just hard.

Sorry to rant...I am just getting run down, and frustrated...combined with frightened.

Thanks.

Charlotte......
I hear you babe I have all the same fears you do and taking care of a one year old as well so I follow your story closely. Other people seem positive we will heal and at this point who knows?? We just need some hope....

Oh Charlotte I really feel for you it is sooo tough and I understand every one of your fears and worries. You know you are better than those first few months but still there seems no end, it's 2 years for me now and I still have days like you have just had, a good cry and opening up to your loved ones helps clear your mind, I'm sure you will feel more positive tomorrow for it.
Keep your chin up Charlotte, there is light at the end of the tunnel, this is the way your life is right now and you can make the best of it, I'm with you.
Jayne:wave:

Hi Charlotte,

Sorry to hear you're having a rough time ... it's especially hard hearing it from you - because you have been such a great cheerleader for everyone else on these boards. I know what you mean about this illness ... it really wears you down month after month. I know I just really feel beat up most of the time. Then, I try to be positive and bam something happens to set me back and it makes it that much harder to be positive the next time ....

However, that being said, just think ... you were able to actually go to 2 fairs in a week - you probably wouldn't have even imagined being able to do that many months ago ... so you are making progress. And, if you look back over the past year - I'm sure overall you're making big improvements .... your progress may not be a straight upward line, but it's at least going in the right direction!

Hang in there! There are better days ahead!! Think of all the people on these boards who say that things got much better for them at months 12/13/14 .... hopefully you're near the end of this thing ....

Hi Charlotte,

I'm really sorry you're feeling like this again. :( It's the worst when you're finally starting to feel better and then it hits you again. Emotional roller coaster. But like ssdizzy said, you were able to go to the fair so you are getting better! I'm sure this setback will pass too and soon you'll be feeling even better again!

*hugs*

Thanks everyone. Yes, I have been able to do so much..I know that is wonderful. I just still feel woozy/whirry...and "carsick" while doing it most of the time. This weekend I felt a solid 90's-95...and that felt amazing. when I feel that way, it is just visual crap remaining. Like tracking issues..or a bit of jumping. The whirryness goes..and the being really tired goes.

I guess I just want my life back. I have worked hard to stay positive, to do what my doctors/pt say to do. I thought if I worked hard...I would be done with this crap well before this.

At month 13-going on 14...I get frightened that I will be stuck, stuck in this vestibular hell. Once you get a taste of feeling close to normal...you don't want to go back.

I know I am preaching to the choir.

Hi char,

Oh hun - you must DIG deep and rely on those around you to get you through these patches. You've been such a support for SO many!

Don't worry a/b what the PT says. You KNOW that you'll continue to fight this until it is no longer the first thing you think of when you wake up or the last thing at night. If I've learned anything from all this, it that I will define what is 100% for me. :)

Remember - this cold will pass and another will come some day. However, the next cold may not throw you off as much...and so on..until one day you'll have cold and that is all it will be...just a cold! Each time this kicks you down it takes a piece of you - I know. You always come up fighting. That is your spirit.

I am at month 16.....and still am improving. YOU WILL TOO!!!!

Hugs,

Tracy

what did your doctor mean by he can't promise you will be 100%?

this thing goes slowly yes but it goes. have you ever come across an older person who told you that they had VN 30 years ago and still has it? no. why? cause its not a life long disease

charlotte, i am so sorry to hear you aren't feeling well. i agree with you that this is such a cruel illness. i doubt myself and my will almost on a daily basis. you hang in there and you will get out of this hell...i just know it!!! you are doing everything right...keep on! maybe the fairs and being sick just took it's toll this week on you?
i feel you and you are in my thoughts:angel: i know how you are worried that you will be "stuck" like this...i am worried about that too. if you were in the 90's...i'm sure you will be back to that quickly...and then to 100!!!
we are here for you---wish we had a magic wand to make everyone better!!!! don't you listen about not ever being normal...that's a load of crap...we should know better ---but i know it's hard when you're feeling down. keep that head up and persavere!!!

Hang in there Charlotte, Comandrelax is right, all of us are going to get over this eventually, its just horses for courses.

A good cry is healthy Char, so let it out.
I believe cries are heard and somehow :angel: comforted, also that tears are felt and somehow :angel: wiped away. Just keep staying strong,and let your loved ones in and be there. And your daughter,, Man, 1st b-days can be so much fun!
Hope you get well soon !:)

Hi Charlotte. One thing I have learned is that when I feel sad to let myself feel it. Be sad, cry, mope, whine, whatever. I went through the "i should be strong" "i should be positve" blah blah blah, so many times. But the reality is every day that you get out of bed and do what you do for your baby and go through your day, that is being strong. Then adding all of the exercises and trying new things like fairs, that is being strong. Feel it when you're sad. We're allowed to fight and be sad and frustrated and miserable all at the same time. There will be an end and you will get there.
Thinking of you,
Joni