I read this post that was shared on the Meniere’s Resources page on Facebook and it really struck me how much I fake being well enough to do things, and I’m sure you all do too. So many people think we fake being sick; if they only understood that we fake being well just to be around them, especially this time of year.
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!