I haven’t written in a long time because, I had someone with Meniere’s tell me they read my blog and found it very depressing. This is something I have feared for a long time. I’ve seriously considered stopping this blog because of this very reason. I do not want people to read about me and think that this is their fate.
I wrote a lot about having Meniere’s Disease and what it was doing to me before I knew I had “MORE THAN MENIERE’S”. Even then we knew my case was very atypical. If you have Meniere’s Disease do not take the progression of my disease as a road map of what your life will look like.
This blog is a journal of my experiences. I am far from a textbook case. As my doctor has said…..I am different from any case he has seen. (he works with a LOT of people with many Vestibular issues at Duke, especially Meniere’s…he is the head of the Vestibular Clinic) He has told me that there is nothing else he can do for me. It is recommended that I go to John Hopkins Vestibular Clinic. They do a lot more research in vestibular disorders than Duke does. Frankly, I haven’t found any other place that does more research in vestibular disorders than John Hopkins.
Most people with Meniere’s never go bilateral. Those who do, most never lose their hearing. For those who do, it normally takes a very long time. And the very, few who get to that point normally have very little to no vertigo after that. If they ever do it is very mild.
I’m very different. When I went bilateral, I completely lost my hearing within 3 years, I now have cochlear implants. I still have vertigo often. Even with Cochlear Implants my hearing fluctuates a lot. (by a lot, I mean many times a day…this is far from normal. Some people with Meniere’s who have CI’s do have their hearing fluctuate if they have a vertigo attack, but not like I do.) I will have times where I can go without severe bouts of vertigo for a while then I’ll have a month or so with attacks every day. That is not normal for Meniere’s. This is very atypical for this disease. As my doctor said, I have more than Meniere’s.
I have tried to steer this blog to cover more of my chronic illnesses as a whole, and not focus on Meniere’s Disease. It doesn’t seem to be working out that way. My vertigo and hearing issues are a HUGE part of my life. How do I not talk about them?
I do not want my blog to depress anyone…..I don’t want it to cause people to have less hope. Meniere’s can be a very scary disease….I do not need to add to it. I’ve always wanted to give people hope. To let them know there is life beyond the disease. That the disease is only a part of the patient’s life, it is not all of your life…it is not who you are. Things are just different now.
Right now I really don’t know what I’m going to do with this blog.
If I change the focus, people will still see the past post and can see it as depressing, and disheartening.
I am thinking about making a static post that you have to see first when you come to my blog before going to other post, and then starting a new blog, that is much more positive, and not mention Meniere’s Disease as much. I am afraid I may lose a lot of you. I’ve changed blogs before, and I lost a lot of people.
Maybe I’ll just give it a try. Or have 2 blogs for a while?
I just don’t know.
Right now. This has really been on my mind and has me stuck.
Love and Peace to all of you!
wendy
Picnic with Ants 
Oh Wendy! Don’t let some people discourage you…..it happened to me, and I really want to start blogging again.
Reading your blog has helped me understand this disease so much…..on the morning of my son’s wedding his mother-in-law suffered a Meniere’s attack. She couldn’t get out of bed for two hours. My son was a wreck, I told him about you and learning about this disease. The poor woman was shakey all day, but she got through the wedding.
I love your sense of humor, and your determination to overcome e v e r y t h i n g you need to get through.
Think again about stopping this wonderful blog.
xoxomo
LikeLike
Thank you Mo.
I have really missed your blogging. Please start writing again!
I was going to write you to see how the wedding went and how the trip treated you….still will…I’d like to know how you did.
I’m surprised she was able to get up and get through it after just 2 hours…she is a trooper!
I hope it wasn’t a very bad attack…well obviously it wasn’t or it would have lasted hours and hours.
I’m very lucky that most of mine do not last that long any more and when I do have them they are much more mild.
I don’t normally throw up any more. My mindfulness practice, and the suggestion of my doctor to use marijuana, has stopped the vomiting.
I haven’t talked about the MJ on the blog. I guess I should, I haven’t because it is illegal is so many places (including where I live, and I’m not private about who I am on here.) OK, I’m too afraid to come out and have a blog post about it.
However, I really wanted you to know that it isn’t as horrific as it used to be….well most of the time.
(I have had vertigo almost every day this week…think it has been Migraine Associated Vertigo though, I get vestibular migraines too..they cause vertigo. My new doc is trying her best to help, but it takes time. I am going to write about her, she is amazing!)
The vertigo this week has knocked me off my regular day to day life….as if it takes much..ha. But it has been slow rotation, so not too traumatic. I get very exhausted from it, and very brain foggy. And very afraid to go out of the house. It has started in the car twice…that is very scary, but hubby handles it so wonderfully. He is the most amazing man in the world…have I mentioned that recently? 🙂
thank you for your encouragement.
you are wonderful.
w
LikeLike
DItto, ditto ditto, mo! Wendy, it is not our decision to make, but if we get to vote I’ll bet MOST of us would say, “PLEASE don’t stop – you are an inspiration.” Your willingness to honestly report your struggles is part of what makes you YOU – and what makes what you do here so valuable.
My two cents, anyway.
xx,
mgh
(Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
– ADD Coach Training Field founder; ADD Coaching co-founder –
“It takes a village to transform a world!”
LikeLike
I would not change a thing! Keep writing as you do.
LikeLike
Well Lisa,
I knew you would say that!
xoxo
LikeLike
It’s more useful to have a source people can go to. If someone thought it was depressing, someone else thought it was informative or inspiring for your resilience. There are many people with many personality types out there!
I see a blog as a public bus. Your readers get in because they see its benefits to their situation or desire for knowledge or entertainment. When the bus reached their stop (and doesn’t provide what they want), they’ll get off. But nothing is permanent , either way, so it’s important that you enjoy the process. My advice is to do your blog the way you want and let your readers decide… 🙂
LikeLike
Michael,
How beautifully worded. Thank you very much.
I’ve been thinking about you.
🙂
LikeLike
Wendy,
I think Michael’s response is wise – blogs are vehicles of expression, nothing more and nothing less. Ultimately, you must stray true to who you are and how you communicate it – which is, I believe, what you have done all these years.
When I try to rearrange “me” to fit what I perceive others want or need it doesn’t work – for them or me.
I wrote a short-story (fiction) and a woman in my writing group commented that she HATED my main character. I felt like the air had been let out of my balloon. Another member responded that having a strong response is ultimately the aim of all writing. That made me really stop and think. If someone responds strongly – positive or negative – you have reached someone in powerful ways – unknown to them – that will unfold over time.
It’s not your responsibility, even if it were in your power! – to give everyone, every time what they want. As Michael said – it’s up to them to decide their own mode of transportation or . . . if they just want to stay put and not go anywhere at all.
You’ve got a great vehicle. Just keep gas in the tank and map your own road trip.
LikeLike
Thank you Judy.
I think the biggest reason it hit me is that I worry that I cause people angst needlessly about their disease when they come looking for answers here when they have Meniere’s. It can be such a scary time and then they get here and their worst fears are on my pages.
But this is my life. and that is what my blog is. A snippet of how I deal with what my life is.
Right now it’s dealt me a pretty hard hand lately, but I’ll write about it soon.
Thank you for the encouragement.
always!!!
LikeLike
@Curious to the Max – super comment, and right ON!
xx,
mgh
LikeLike
Wendy,
The special thing about “Picnic” is your vulnerability, honesty, and transparency. If the blogging world lost “Picnic”, we’d lose a gem. I have met a lot of folks with Menieres (both face-to-face and virtually). Few of us are cookie-cutter versions of each other. Triggers, comorbid diagnosis, and healthcare are all different. My Audi and specialists are at Johns Hopkins. I am one of the “lucky ducks” who after I lost all my hearing and getting a CI, I only have mild vertigo now. What is a little ironic is that earlier falls and multiple concussions have permanently screwed up my balance.
Every Menieres story I read encourages me… Even when someone is writing about a rotten day. It reminds me that I’m not alone. It reminds me that there are those who understand. We need your voice. I wish more blogged. The good, the bad, and the ugly are important stories.
Denise
Hearing Elmo
LikeLike
thank you so much Denise.
Coming from someone who I know has battled Meniere’s for so long, this means a lot.
I want people to know, yes this is hard to deal with, but it isn’t the end of you life, no matter what happens.
My balance is pretty shot, but I use a walker, and have learned to fall well…haha.
I’m lucky, I don’t fall bad much. I’ve only come down hard on my head once.
I broke my foot once when I feel against the wall and twisted it, but that’s about it.
I know many who have had black eyes, and everything, but me….not that much.
I have bruised some, but I kind of collapse in on myself, or slide down a wall….but I have my walker and I hold on tight, and flop on my seat. That’s why I got it. A cane will not hold me up. and I got tired of people looking at me like I was drunk when I had to grab a hold of counters in stores. haha
I’ll write about this some day soon.
Thank you my dear.
I really appreciate this.
wendy
LikeLike
I understand your dilemma. I’m one of the “unique” ones like you. My chronic pain and mental illness doesn’t fit into neat boxes. It’s a “you have . . .” but the “unified theory” just doesn’t work.
If you sugar coat your life, then you’re not you not necessarily being more helpful. I agree with the comments that suggest real posts help folks feel less alone; that others share the day to day issues of Meniere’s.
A static front page would explain what your blog was about; “enter at your own risk.” I used to blog about health issues (mine specifically). I gravitated toward creative writing because it was therapeutic just as writing about my mental illness gave me an outlet for all the things I was going through.
I’ve often thought of not blogging. Where is my silly blog going, etc. Using writing prompts has opened up a part of me I sealed off. In the end, I think (though I don’t always apply, :)) is what do you get out of blogging? A piece of ourselves is within every blog post. I write about my pain and depression, just packaged differently.
I’ve been reading your blog for years and several posts stand out. Some are the hopeful ones, some are the mindfulness ones, and many are the ones where you are spilling your heart. I hope you find the balance both in blogging and in life. (oops, no pun intended. :} ).
LikeLike
Phylor,
As always, you understand, and speak the truth.
I don’t want to sugar coat my life. that’s why I thought of writing a new blog that just talked about my Chronic Illnesses as a whole, and didn’t focus so much on Meniere’s by name.
But you know, people need to know you could end up like me. You just might end up having “more than Meniere’s”
My blog is …as my side bar says…a journey of my life with chronic illnesses…my vestibular illnesses is just the most prominent.
We’ll talk some more about it…see what you think.
I’m going to keep blogging, it’s just the layout and such I might change a little, so people won’t get the wrong idea.
thanks again.
LikeLike
Wendy, please don’t change, your blog or your personality. We love you because of who you are. Oh, and happy birthday!
LikeLike
I don’t find it discouraging at all, and this is coming from another Meniere’s sufferer, and I am still early in I’ve only had one 4 month episode followed by a blessed remission. I lucked out and only lost 50% of the vestibular functioning in my Meniere’s ear, and very little hearing (if any, I’ve had hearing loss in that ear since I was a kid).
It may sound odd, but it is actually encouraging to read other people being willing to write their far from typical and at times worst case scenarios. With some of my other conditions, ahem chronic basilar migraine, I tend to feel alone, as there are very very few people out there dealing with it.
Writing about what is really going on is helpful to others, often dealing with similar freakish circumstances just with different disorders. There are also that handful that with the same degree of Meniere’s that will hopefully find you and be so happy to not be the only one.
Even more so I appreciate you working to be upbeat and to keep living despite all the BS your health throws you. What is more disheartening than reading about someone who has lost their hearing, is reading about someone who isn’t doing nearly as bad physically, but has given up mentally/emotionally.
LikeLike
Syn,
I swear I approved and commented on this before and now I see it is still here and not approved….so where did it go?? hmmm?
Thank you very much for your very kind words! Words I really needed to hear.
(I swear I think I said more the first time…but my head hurts too much this time…I know you understand. I’ll post soon…maybe a something kinda off the wall today..ha)
Thanks again!
LikeLike
Wendy
I’m know I’m running behind on everything. I think you do a wonderful job.
No case of Menieres will ever be alike. For example, I rarely hear of Florescent lights bothering anyone else. They through me for a loop though.
Please keep doing what you are doing !
LikeLike
Rina….Florescent lights can bother me, not always, but sometimes. They really bother my migraines, but can make me feel all kinds of loopy.
We can all have our triggers.
Funny how something will bother me often but on some days it won’t bother me at all.
curiouser and curiouser
we are a strange bunch.
LikeLike
If someone is having emotional issues by reading their blog it’s their responsibility to stop. Your stories are real and important to the universe and I’ll be upset if you stop writing. In fact, every time I get on WP you’re one of the first people I think of, and even when I’m NOT on, one of the people I hope to speak with soon. We all get a little depressed when reading about others with our illnesses, and people we care about having struggles we can’t do anything about, but you’re a strong woman who I need to fill my life with stories of your own so if nothing else your stories can live on in my life, and that’s a lovely thing to have in the world. ❤ Miss you dear.
LikeLike
bipolarbarbieq,
you are such a darling. I miss you too.
I promise I am going to post soon.
just been having a rough time of it lately.
you feel a void in my heart too.
if you ever need me…feel free to email me.
with much love. ❤
LikeLiked by 1 person
I’m awful with keeping up with e-mails but I do indeed plan on sending you one soon(ish) *when I can manage. My mind is just always this jumbled chaos, but you know that by now. ❤
LikeLike
I can’t add anything that hasn’t already been said (even though I left a few “right on” comments to their comments above. You don’t need to change ONE SINGLE THING about this blog. It is a gem!
xx,
mgh
LikeLike