Monday, March 2, 2015
A New Blog I Really Like
Mind Over Meniere's popped up on a Facebook feed and after reading through it, I think I found a kindred spirit - one who writes much better than I do and who has a knack for sharing many of the same techniques I've found helpful while learning to live with this disease. I hope you'll check it out.
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I checked this blog out. I felt like it was a slap in the face. If you did these things you will be back to normal, you can over come, there is nothing you can't do.....
ReplyDeleteFor some there is only so much you can do, and this disease can take over your life no mater what.
I have never given up. But if I kept thinking that if I ate well and exercised right and did everything right then I could over come, then I would be pretty damn depressed. I accept I have a chronic illness. If it is Meniere's, or "more than Meniere's". I will take it as it comes. I will continue to try to find better ways to deal with it, and hopefully get better. But to say you can back to your old life? After so many years like I have been....well that is just a slap in the face. And it makes me feel like someone is telling me....well you just aren't trying hard enough.
am I trying hard enough?
Yes, good point, Wendy. I did have that sense, too. What I liked was the post on meditation and acceptance. I should have qualified the title. I certainly agree with you that many of us DO NOT have any control over our symptoms and disease progression. I apologize if anyone else felt I was sending this message. I'll have to update this post when I have minute.
DeleteHi Angela, I saw I was getting traffic from your site and I was really touched by your kind words. To the first commenter, I'm so sorry my site came across like that. When I was first diagnosed so much of what I read filled me with fear. Over time I realized that having hope is so important. I started the blog to share everything I've learned from a place that inspires hope rather than fear. I will go back and edit some of my earliest posts, I never meant to impart the message you felt. I only meant to inspire hope in the newly diagnosed. It took a long time to get my health under any kind of control and to this day if I'm not ruthless with my lifestyle I still have symptoms. I'm so sorry that it felt like a slap in the face. I would never want to send ANYBODY that kind message. My heart goes out to anybody who suffers daily and has symptoms that are triggered by things outside their control.
ReplyDeleteThanks, Glenn, for your thoughtful comments. I think your message is so important and I'm happy to spread the word.
DeleteUnfortunately, this disease seems to run the gambit from an intermittent annoyance to a completely disabling and unrelenting nightmare.
In communicating with dozens of people over the past six years through patient support forums, email, Facebook, and even a few in person, I have found that it seems for some people, lifestyle and dietary triggers can be identified and avoided with fair to good results. But many of us, myself included, were not so lucky. The attitude of some for whom this works is one of "well you must not have tried hard enough." As you can imagine, that message is maddening, especially for people who lack support or the understanding of friends and family.
All that being said, I know from my own experience that acceptance, meditation, a healthy diet, and, when possible, regular exercise, go a long way in controlling the controllable. By that I mean, the stress and anxiety which make the suffering so much worse. However, for many of us, even meticulous attention to those things do not stop the vicious cycle - only make it slightly less miserable.
Keep up the great work. You're a really good writer and offer a lot of insight into coping with this disease which I know many need to hear.
I hope you'll peruse some of my posts and find some tidbits of interest to you. I eventually found someone who validated what I felt from the very beginning, which was that my symptoms were the result of a chronic, insidious infection (dysregulation) of my immune system. You can read more about this under the Stephen Spring tags on the left side of the screen.. Given what I've learned, I have great hope that someday during my lifetime this will be recognized as at least one of the causes of this miserable disease and treatment will be quick and effective.
Stay in touch,
Angelea