Thursday, October 27, 2011
Exercise
Well, this morning I realized I was in a rut. I needed to change things up a bit. It's not just the yoga that's good for me....it's exercise. It's moving. I know that it's not good for me to stay in one position too long or I start to feel dizzy. That's why I'm more dizzy in the mornings....because I've been lying down all night. And that's why I can't work on a computer for several hours at a time...or I will trigger a dizzy episode. I need to move! So that's what I did.
This morning I went for a walk! It was scary at first knowing that I could get dizzy at any time so far from home but I wouldn't take that as an excuse to keep me cooped up at home. I took my phone with me in case I found myself dizzy on the side of the road and needed to call for help, and I took it slow. I didn't go far but I went far enough to know that I enjoyed it. I felt a little wobbly by the time I made it back home but overall I could tell it was good for me. It was good to get out of the house for a bit. It was good to teach my ears balance. It was good to get the blood flowing. I'm not sure it will become a daily routine and obviously it won't happen on the days that I'm suffering from extreme dizziness or vertigo, but I think it will happen again. Actually I know it will happen again. I love the idea of a morning walk.
Besides, I have some really great walking buddies who love the idea too! ;)
Much Love,
Shanon
Sunday, October 23, 2011
tired
Friday, October 21, 2011
Jennifer's "My Life with Meniere's" story (part 1)
Thank you for allowing me to share my Meniere's story. My name is Jennifer. I am a 40 year old married mother of four Even though Meniere's patients all have the same disease it can manifest itself in different ways and differing severity. For any of you who don't know, Meniere's is a fluid imbalance in the inner that can cause vertigo, ocular disturbances, tinnitus, pressure in the affected ear, loss of balance, loss of hearing, brain fog, slurred speech and falls. Telling someone you are constantly dizzy is putting it mildly. When people ask me what it is like I tell them to go outside, close their eyes, put their arms out and spin around as fast as they can for 20 seconds, then try to walk a straight line without falling down while reciting the alphabet backwards.
Thank you Jennifer for sharing your story with us! I can relate to so much of what you said it's comforting yet sad to know that someone else goes through this pain that I know all to well. One line that stuck out to me was, "Of course if your Meniere's is severe enough, like mine, you are not able to drive and spend a lot of time in bed or on the couch...alone." There are many times I've felt this same way....ALONE and isolated. But we are not alone. Just remember every day is a new day.
We look forward to hearing from Jennifer again soon! Of course once she is feeling up to it, she will be back to let us know how the surgery went and let us know how she's doing. Stay tuned! Wishing you a speedy recovery and fewer dizzy days Jennifer!
If you would like to be a guest blogger please click here to see how to become involved!
Much Love,
Shanon
Thursday, October 20, 2011
Heavy Head
Much Love,
Shanon
Wednesday, October 19, 2011
Jeff's "My Life with Meniere's" story
I’ve been thinking about this for a while; I guess I was just waiting for an invitation.
My name is Jeff, and I am Shanon’s (insert flattering adjective here) husband. I’m incredibly proud of her for the strength she has shown while facing a disease/disorder we had never heard of before it barged into our lives; however, sometimes (and I’ve told her this) I feel like it might help others to know how bad it gets. I don’t have Meniere’s and I enjoy relatively good health, but it has been unimaginably beneficial to know what she suffers through so I can support her.
Now don’t get me wrong, in our seven- or eight-year battle with Meniere’s I’ve read enough to know that while her symptoms are awful, many people have it much worse than she has, but she’s the one in my life – she’s my point of reference.
It’s hard to watch her quality of life diminish at such a young age. She doesn’t drive anymore because of vertigo, she has to have conversations with friends via text because hearing aides didn’t work and her lip reading is limited. She’s lost her job, her independence and a significant chunk of her sense of self, and every doctor we’ve seen eventually throws his hands up in frustration. She’s cried herself to sleep so many nights and for so many years that my words of encouragement have changed to supportive hugs and silence; if all the doctors have reached the end, I can’t give her any hope about her circumstances that doesn’t feel false.
Her family is great, and she has amazing friends who are always there for her, but many of them still don’t fully understand that Meniere’s is more than just a hearing disorder – it is, in many ways, an isolation chamber. They often don’t realize that when their faces turn from her, she loses the conversation when she loses sight of their mouths, or that every time she responds with a smile to a roomful of belly laughs, part of her feels left behind. And although volume and patience are vital when communicating with someone with a hearing disorder, she finds that many well-meaning people aren’t willing or able to give enough of these.
It’s hard; it’s hard every day. And maybe the best we can hope for is that our friends and family continue to make her feel a part of that circle by being mindful of her disability and adjusting their communication over time; Shanon and I both sincerely wish you the strength to let your circle know when you need the same.
Short and sweet. Thanks dear! I love you! Oh, and for the "insert flattering adjective here" part I would add "amazingly wonderful, handsome, passionate, caring, lovingly sweet" husband. Thank you Jeff!
Now it's your turn! Please contact me at fookaDESIGNS(at)gmail(dot)com if you would like to share your story. Thank you to those of you who have already submitted. I plan to share one about every week or so, so keep 'em coming. Until then...
Much Love,
Shanon
Monday, October 17, 2011
Need Support?
Here are some cards I created for my blog. I thought it would help to have these sitting in doctor's offices and at support group meetings for meniere's patients and caregivers. I created them awhile back but I'm just now getting a chance to share them with you. In fact, some of you may have already seen them up close and in person, since they are already sitting in my audiologist's office now. Dr. Gary McKnight has kindly agreed to give these to his patients who are suffering from Meniere's Disease and vertigo. I've already heard from a few of you who found the blog this way! Woo-hoo! Welcome to the blog! I hope you all are finding support here and know that you are not alone. Please take a look around. You might notice at the bottom of each post there are "labels" to categorize each post. For example, at the bottom of this post you will find the labels: "support", "welcome", and "meniere's" If you click on any of these labels you will be directed to a page that will bring up all of my posts that relate to that topic. So if you are looking for more information involving different topics associated with meniere's disease such as, vertigo, depression, diet, support, etc, you can find it easily with just one click. I hope this helps and I hope you will consider becoming a follower (to the right of this page) of the blog as well. Be sure to visit often and comment as well. I would also like to invite you to share "your meniere's story". The more support we have from each other the better. Thanks again for all YOUR support! I don't know how I could get through this dizzy life without YOU!
Much Love,
Shanon
PS. If you'd like any of these cards for yourself or to set in your doctor's office just let me know. I'd be happy to send you some!
Thursday, October 13, 2011
Bad Attack
A bad attack is always lurking around the corner. You never know when it's going to show its ugly face. And when its there, beating you down you never know when it will go away. It could take several minutes, hours, or even days.
As you know from yesterdays post, I started my day with a horrible 2AM wake up call. A vertigo attack woke me up from a deep sleep to let me know my world was spinning. Luckily, it didn't last long and I was able to go back to sleep...once I changed rooms away from the dogs and hubby. (Sharing a bed during a vertigo attack is not a good idea...any slight movement can set you off into a deeper attack.) So, once I was camped out on the sofa I was able to go back to sleep. Unfortunately, that wasn't the end of my Meniere's episodes for the day.
After my disturbing middle of the night wake up call, I woke up on my own at a reasonable time later that morning. I was actually feeling pretty good, especially considering I had just had a vertigo attack only a few hours earlier. So I went about my day with my morning yoga, breakfast, checking emails, etc. I was doing pretty good. I decided it would be a good day for me work in my art studio....it's the one place I can go that I feel happy and can forget about my Meniere's for a little bit. Except this time. I soon realized that I was having small dizzy episodes. While I was looking at the canvas, getting ready to paint my next stroke everything started to spin. It only lasted a couple minutes so I tried to ignore it and work through it (which is never a good idea). It wasn't long before I knew that I needed to go lie down and rest. So that's what I did. I ended up taking it easy the rest of the day, trying to prevent anymore attacks. For the most part it was a good afternoon as long as I stayed put. Later that evening I found myself having an extremely bad headache. It came up very quickly and felt horrible. The pressure and pain was so unbearable that I decided I needed to take something for it. I'm not one who usually takes medication for any reason if I can avoid it, but this was one of those times I felt it was necessary. So I got up to figure out what drug I was going to take when it hit me, a bad vertigo attack. All of the sudden the entire room was spinning. I immediately had to lie back down and curl up in the fetal position, closing my eyes and holding my head for dear life. It didn't take long for the nausea to begin and I knew I was going to be sick. I crawled to the nearest trashcan which felt like miles way but really was less than 10 feet. I made it there just in time to throw up several times. I eventually made it back to the sofa where I laid there, hugging the trashcan and praying for my world to stop spinning. Like I said before, I don't like to take meds unless I absolutely have to and at this point I knew I had to take something to get the vertigo under control. My rescue meds were already sitting out on the table next to the sofa but I was so dizzy that I couldn't tell for sure which one I needed to take. I kept looking at the different bottles and baggies of pills trying to read the labels. Not getting anywhere, I decided on one and swallowed it with a gulp of water as quickly as I could so that I could lie back down. It didn't take long before I was throwing it back up. I waited for my stomach to settle down a bit and took another one, only to throw it up as well. I began to panic. How was the spinning ever going to stop if I couldn't keep the meds down?! As I was vomiting I began to cry. I was scared and I was alone. All I wanted to do was call someone to help me but I couldn't see the phone long enough to dial the correct numbers and then of course how would I be able to hear the person I called? I desperately wanted to call 911 hoping they could rescue me, give me a shot or something to make it all go away. Even if they could do this I knew it wasn't a good idea considering I didn't have health insurance anymore since I lost my job. So there I was, a slobbery, tear-filled, pukey, dizzy mess. All I could do was wait. So I waited. And waited. And waited. After about 2 hours of this nightmare I finally fell asleep.
Eventually Jeff came home from work to find me in this mess. Luckily by then my dizziness had stopped but that was not the end of my nightmare. My head was still in massive amounts of pain. It was so bad I couldn't even hold my head up. Jeff, aka my hero, helped me get cleaned up, made me a bland dinner to appease my stomach and gave me a migraine pill. Eventually the pain deteriorated enough that I was able to go back to sleep and rest through the night.
This morning I woke up felling better, but feeling like I had been run over by a truck....a really big truck. I feel quite achy, probably from being tense during the vertigo attack, and I'm still very tired even though I slept almost 12 hours straight. But I'm not dizzy. Not right now at least. I don't know when my next attack will happen. It could be weeks, days or even just minutes away. All I can do is try to enjoy every minute I have that is dizzy free, and pray that today is better than yesterday.
Much Love,
Shanon
Wednesday, October 12, 2011
Losing it...
So that's what I've been doing the last couple of days....sleeping, resting and losing it. I'm literally losing everything around me. I've lost my independence because I can't drive. I can't work anymore. I can't really go anywhere alone for fear that I will have a vertigo attack or at the very least I won't be able to hear what someone is trying to say to me. I feel like I don't even know who I am anymore. I just want to be normal. I want to be able to go to work, run errands on my own, talk on the phone with family and friends. I want to be happy. But I can't. Because of Meniere's Disease I've lost my job, my independence, my ability to have a child. It's all gone. And now I'm losing my home. My young adult life is wasting away. I feel like an old lady, unable to hear or walk on my own sometimes. It's like I'm an 80 year old woman with the spirit of a young 30 year old. My spirit is still very much alive. I feel young, energetic and creative. I want to do more. But instead I'm stuck on the couch losing everything...watching everything I love around me disappear. Waiting for the room to stop spinning and the tinnitus to stop screaming in my ears.
Thanks for listening, or reading I guess. Thanks for being there for me. Hoping you're having a dizzy free day.
Much Love,
Shanon
Monday, October 10, 2011
Busy, Busy, Busy!
Wow! Things have been crazy busy lately. As you know, from recent posts due to my circumstances we are now trying to sell the house as we are unable to live off of Jeff's income alone. We need to down size, which is fine with us as we've been wanting to move for awhile, but we were just wanting to wait until the Spring when the chances of selling were better. Now we're facing Fall and Winter trying to sell a house in a down market...the odds aren't in our favor. But, it is what it is. Hopefully we'll find a buyer soon. It really is a beautiful home with a big fenced in backyard and large deck for entertaining. We've been working so hard to get it all fixed up and ready to go on the market. It's turned out very nice if I do say so myself....
After we were done landscaping, refinishing the deck, and cleaning and organizing the inside we were pretty impressed. It kinda made us want to stay. But of course we can't so now it's FINALLY on the market! Yay! If you, or someone you know are in the market for a great home in Topeka you can check it out here.
Oh, and don't forget...I'm still looking for YOUR Meniere's story. Thanks so much to those of you who have submitted your story all ready! I plan on getting a few more and then adding them to the blog either on a weekly or monthly basis, depending on how many submissions I receive. But don't worry, they will all be added to the blog soon! If you haven't turned yours in yet be sure to do so, or just let me know you would like to submit something soon!
Much Love,
Shanon