Support

I've said it before (and I'm sure I'll say it again), one of the biggest challenges for someone with Meniere's is feeling isolated. That's why it's SO important to find support from family, friends and especially from others who know what you're going through. Having someone to talk to who is experiencing the same tinnitus, hearing loss and vertigo nightmare helps. Sharing stories, suggesting helpful treatments and being there when you need a shoulder to cry on. Just knowing you're not alone.

There are many support sites online that are very helpful.

If you're on facebook I recommend joining these groups:

Meniere's Disease
Marlys Soderberg Meniere's & Tinnitus Support Group


If you're on twitter I recommend you follow these tweets:

@MenieresandYou
@dizzylore62
And the famous Kristin Chenoweth @KChenoweth
And of course ME :) @fookaDESIGNS

I'm sure there are more great Meniere's support pages out there. If you know of any be sure to leave a comment and let us know!

Also, I'm still working on the "in person" support group in Topeka. I'll keep you posted as I find out more!

Welcome New Followers

Hello and welcome to the new followers of the My Life with Meniere's blog! I want to thank you all for joining us, and to remind you that this blog is for YOU, it's for everyone. Everyone who has Meniere's, everyone who knows someone with Menier's, everyone who just wants more information about Meniere's. I blog because it helps me through the tough times and it reminds me that I do have good days too. I blog to inform people about this condition and give support to people living with it. I want this to be a place you feel comfortable sharing your experiences and talking about how it makes you feel. Living with Meniere's is difficult for many reasons but one of the most challenging obstacles I've faced is feeling alone and isolated. This blog helps me overcome that obstacle. So thank you again for being here and following along. Feel free to leave your comments and invite your friends and loved ones to follow along. The more the merrier!

Much Love,
Shanon

MIA

I know, I know, I've been missing in action for a week now! Sorry, but I have a good excuse. Yup, you guessed it...I have Meniere's disease. To be more specific the tinnitus has been bringing me down. In my last post I explained what tinnitus is, so here I'm just going to complain about it. *disclaimer the next paragraph has words that may not be suitable for all audiences. Read at your own discretion*

WTH, go away! What did I ever do to you?! Grrrrrr! The constant ROARING in my ears is driving me crazy. I can't hear, or think straight, or even get a good night of sleep! Leave me the F* alone!

Whew! I feel better now. :) Honestly, I do. But not only because of my little rant above, but because I've had a few temper tantrums and sob fests the last couple of days. I just couldn't take it anymore. I cried my eyes out. And now I feel so much better. No, it didn't do anything for my ears, but it did make me feel relieved to just let it all out. I spent several days feeling like I was being tortured, and frustrated that I couldn't do the things I wanted to do, like watch TV, listen to music, go to a movie or have a decent conversation with my husband. I was definitely feeling sorry for myself. So I just let it all out...I cried and cried and cried. But after I spent some time in bed with a box of tissues I realized that there is plenty of things I could be doing even with the constant tinnitus. After all, I'm grateful that I'm not having any vertigo attacks (knock on wood) so I should make the most of my time, right?! So I picked myself up, discarded all the used tissues, made my bed and I went to work in my studio, the one place that I can just lose myself from all the noise and just create.

I've been having fun making felt pins, working on digital illustrations, promoting my bird paintings and photographing my work. Here are some of my felt pins.

Felt Pins available here

I guess my point is that it's okay to get down about your condition, just be sure that when your done to dust yourself off and get back up again. Don't let your Meniere's or any other chronic condition bring you down for too long. And if you need a place to go during your own temper tantrum you can always come here.

Much Love,
Shanon

Tinnitus!

Ugh! It can drive a person mad! Seriously, I feel like I'm going crazy.

For those of you who don't know, tinnitus is ringing or noise in the ears. Many Meniere's patients describe the noise as ringing, humming, buzzing, roaring, crickets, fax machines, etc. And sometimes it's a combination of the noises. Unfortunately, it's a constant 24/7 complaint.

For me, it's in both ears and it's there all the time but it fluctuates in it's intensity. Most days I can surprisingly forget about it or even "tune it out". But when it gets SUPER loud it's all I can hear and feels like a death sentence. Currently I'm on day 3 of the SUPER loud tinnitus. At this point I'm ready to dig my eardrums out with spoons! Of course I'm only joking...kinda! :)

Some people say that famous artist Vincent Van Gogh suffered from Meniere's disease and that it's the reason he cut off his ear.


Well, I don't think I will go to such extremes, but I'd really appreciate it if the tinnitus could just give it a rest for a bit. Or forever really! :)

Much Love,
Shanon

Google+

Well, I did it. I started a Google+ account. So far I'm really liking it, well except that there are only a small handful of people on it right now. But if it takes off I'm thinking it will be a really nice social networking platform. I'm really liking the "circles". I even created a "Meniere's Support" circle. I think it will be a great support tool for me and my Meniere's buddies. If you're on Google+ let me know and I'll add you to my circle! You can find me just by searching "Shanon Fouquet". My plan is to share tips, recipes, the ups and downs, and simply show support with others suffering from this condition. I'm really excited! Hope you'll join me!

In other news, my tinnitus is out of control today! Can't hear anything! Disappointing to say the least, but hopefully it goes down soon. And hopefully this week will turn around for me. Last week was really tough. I had only 2 "good" days out of 7. Three of them were dizzy days and the rest were recovery days. I've been getting pretty down about it but trying to stay positive. I hope you're having a dizzy free day!

Much Love,
Shanon

One Step Forward. Two Steps Back.

Living with a chronic illness can feel like climbing an uphill battle with no end in sight. Every day can be challenging. But it seems the most difficult for me is when things are going really well and then BAM you hit a brick wall. Everything comes to a screeching halt. I'll be having what seems like a good day, or several good days in a row, and then out of nowhere that all comes crashing down. I can't help but feel like that I am being punished for having a good day and enjoying life.

Monday, the Fourth of July was a great day for me. I enjoyed spending time with family and friends, eating amazing food and watching the fireworks. My hearing was the best that it had been in a long time so I didn't even have to concentrate on reading lips in conversations. I was able to relax and enjoy myself. I even rowed a boat a little that day, and found myself in a push-up competition. I felt amazing! ....well amazing for someone living with Meniere's disease. Unfortunately, I paid for that good day. For that ONE great day, I spent the next TWO days in bed too dizzy to move. I felt worthless and pathetic. After having a wonderful day I was now bed ridden, unable to even take care of myself. What did I do wrong?! Why was I being punished for enjoying life and being able to do what everyone else gets to do on a daily basis?

Unfortunately, I don't have the answers to these questions. All I know is that that's just the way it is. I have to learn that I can't over do one amazing day, otherwise I might regret it later. It's important to find balance and not take on too much all at once. But it is so difficult. For the past two days I've been lying in bed feeling sorry for myself, thinking about all the things I could be doing, but that I couldn't. And all I wanted to do when I was feeling better this morning was to play "catch up". I wanted to clean the house, do the laundry, work in my studio and prepare a healthy supper for me and my husband. But I had to slow down and think about the consequences to these choices. If I jump out of bed from being dizzy for two days straight I'll more than likely end up back in bed before the day is over. So I made a plan for the day and stuck it on the fridge:

1. Yoga
2. Clean house
3. Blog

That's it! Three things on my "to do" list for the entire day. I know it seems pathetic, but I know it's all I can handle right now. And trust me, I feel A LOT better about this list than I do about my wallowing around in bed for two days doing nothing list. I have to accomplish something and three things is something. With this list I'll feel like I have a purpose. It's not much of a purpose but hopefully if I keep my daily goals simple and attainable I will be able to add more to my list, and have more good days. Eventually, I could have two steps forward with only one step back. Or maybe event three or four steps forward, with only one step back. I realize that I can't beat Meniere's disease all together, but falling backwards doesn't have to happen every other day. And hopefully one day I will see the light at the end of the tunnel and so will you!

Much Love,
Shanon

Independence Day

As I think of the word "independence" I think about all that I've had to give up on because of my bi-lateral Meniere's disease, causing me to feel less and less independent. I don't go anywhere without my cell phone...not even within my own house. I don't drive anymore. So many times I've had to rely on my husband to talk on the phone for me, or help me through a face to face conversation because I can't hear.

It's easy to think about all that I've lost and the difficulties that go along with this condition. But I try to look at the positive. I try to focus on the good days. I'm still able to do my art and create because I have my vision. And I can still communicate with my family and friends with text messages, facebook, email and all the other wonderful forms of technology. And most important I have a wonderful husband who is happy to take care of me when I need help. If I can't have my personal independence I'm so grateful to have someone so willing to walk me through it.

Happy Fourth of July everyone! I hope you are having a wonderful and safe Independence Day! And if you're going to be watching the fireworks tonight, be sure to wear your earplugs if you are sensitive to loud sounds like many Menerie's sufferers!

Much Love,
Shanon

It's HOT!

It's REALLY, REALLY hot! Like over 100 degrees hot, with a 110 degree heat index. Yeah, I'd say that's hot! I'm not sure that the heat is a trigger for Meniere's sufferers, I've actually never heard of it being a problem with this condition. But for me it only becomes a problem because I start to spend less time outside. Going outdoors is crucial for me in so many ways. For one I need to go outside purely for my own sanity. I love the outdoors and nature and as soon as I'm cooped up inside for too long it starts to pay a toll on my mood and overall health. Not only is the outdoors calming and simply enjoyable for me but it's essential for my art inspiration. My paintings and digital illustrations are filled with birds, trees, flowers, bugs and other outdoor creatures. So if I can't get outside, I can't create. And if I can't create, I'm not happy. If I'm not happy, well I start to stress, and worry, and think about my condition which snowballs and makes everything worse. My point is that the outdoors is a good distraction for me. It's also important to me that I do yoga outdoors, and go for walks and even hikes when I'm feeling good. I have to move! If I stay stagnate for too long I start to get stiff and achy which for some reason triggers a dizzy episode for me. It doesn't make much sense, and I really haven't heard of this being a problem for others with Meniere's but I've noticed it. And one of the best things someone with Meniere's can do is be in tune with their own body and notice your own triggers. I know that if I start to feel a little stiff in the back or neck that I need to move around and stretch so that I can hopefully prevent an attack before it happens. And like I said, I prefer to do these things outside if I can but once the temperatures start to climb over 100 degrees I find that VERY difficult. So my plan is to continue to do my A.M. yoga on the back deck when the sun is just coming up, and I'm going to try to squeeze in a morning walk before it gets too hot. And if I don't get my walk in before the sun is beating down on me I hope to get out for a late night stroll when the sun is setting. Avoiding the summer heat is nearly impossible but hopefully this plan will keep me sane and with less dizzy episodes. I'll let you know how it goes!

And for those of you who haven't seen this cute cartoon clip you should check it out. It's Hot in "Toe-pe-ka"! :) Stay cool friends!

Much Love,
Shanon