Author Topic: "MD and me"  (Read 928 times)

Offline Andrew H

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"MD and me"
« on: Sep 20 2017, 05:35 PM »
Hi everybody

It's been a long time since I last looked in here, but I see it continues to be active, which is great.

After a decade of being pretty secretive about my condition, I have decided to "go public" as it were, and have written an account on my website at http://andrewhugill.com/menieres/

I hope it is interesting. You'll see that I mention this message board as an important place for sufferers like me, and I am still grateful for all the interactions I have had here.

Andrew

Offline milady

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Re: "MD and me"
« Reply #1 on: Sep 20 2017, 07:48 PM »
Thank you for that link, Andrew, it was most interesting.

I quite appreciate your reasons for not announcing your difficulties with MD in the past. Sadly, people with no experience of vertigo or hearing loss have no idea how unnerving these things can be. I am still at the 'probably Meniere's' stage, though I have had progressive hearing loss for many years and have lost the lower frequencies. I no longer listen to music much because I can only hear parts of it - everything below violas has gone, and I prefer to remember how it should sound, and did all those years ago.

I graduated to 2 hearing aids several years ago, but still struggle to hear in crowded places.  Unfortunately people don't seem to grasp that a hearing aid doesn't restore 'normal' hearing, just tries to assist what you have left, and that lip reading is harder than they imagine. Traffic noise, clattering plates, groups of people all talking at once, are impossible. However, I've got to the 'grumpy old woman' stage and if I can't make out what someone is saying, I tell them so, and explain that they should speak more clearly (not shout) and a little more slowly, and be prepared to repeat or rephrase. The danger is that one stops listening because concentrating on deciphering the Chinese Whispers is hard work, and then one gets a reputation for being daft, when one is merely deaf!

I hope your website post gets read by non-MD sufferers too; the more we talk about it and explain it, the more chance we have of not being dismissed as drunk when we're really in a spin.


Offline Andrew H

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Re: "MD and me"
« Reply #2 on: Sep 21 2017, 05:20 PM »
Thank you very much for those comments. Needless to say, I relate to (and indeed feel) every one of your points.

The text has had quite a lot of attention on Facebook and, according to google analytics, has been visited 515 times since it was posted two days ago. So I do think it is having some benefit in terms of raising awareness amongst non MD sufferers.

All the best
Andrew

Offline chrissieg

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Re: "MD and me"
« Reply #3 on: Sep 21 2017, 10:45 PM »
It was lovely to hear from you again Andrew and I read your article with interest, identifying with much that you write about. I was glad to read that you now feel able and confident to share your situation with work colleagues and there have been no professional repercussions.
I think its terribly important for newly diagnosed folk to hear that one can eventually lead a full, if different life. Searching the internet initially, you constantly read the the condition is incurable, progressive and leads to deafness, depression and loss of employment. Your story helps dispel that fear and gives important hope but it also highlights the need to accept the condition and to become your own medical expert.
I hope you continue to be as well as possible and enjoy life on your narrow boat!

Best wishes
 ( in Leicester)
Chrissie

Chrissieg

Offline Andrew H

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Re: "MD and me"
« Reply #4 on: Sep 22 2017, 10:51 AM »
Hi Chrissie,

Many thanks for your reply. Of course, I agree 100% with all of your comments. I hope anyone who reads my account feels encouraged, whatever the state of their own MD.

I'm glad to see you are still flourishing, and I send you all the very best wishes,

Andrew

Offline Silver Fox

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Re: "MD and me"
« Reply #5 on: Sep 22 2017, 01:18 PM »
Hi Andrew I'm new to this forum and have just read your account of your Menieres journey and found it very helpful.
I can relate my symptoms to your experience and it has given me hope that there is light at the end of the tunnel.
I'm due to have the steroid injection this coming Thursday and hopefully it will help with my vertigo attacks. As these are the most debilitating symptom effecting me.
Regards
Ed

Offline Andrew H

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Re: "MD and me"
« Reply #6 on: Sep 22 2017, 01:34 PM »
Hi Ed,

I'm glad that my text has been helpful for you. Best of luck with the steroid treatment. I have heard very good reports of it, and I know it is a preferred treatment these days. I wish you well on your 'journey' through this horrid condition.

Andrew

Offline MissCheeva

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Re: "MD and me"
« Reply #7 on: Oct 06 2017, 10:38 AM »
Hi Andrew,

Thank you for sharing your story.  I find it does help me hearing about other peoples experiences of this illness.  It makes me feel that I am not alone.  When times get bad I draw strength from stories like yours.  I am glad that you can talk about MD now with colleagues and friends.

Thank you again.
MissCheeva

Offline Andrew H

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Re: "MD and me"
« Reply #8 on: Apr 12 2018, 02:18 AM »
Hi MissCheeva

Sorry for the slow response.

I'm so glad you drew some comfort from my story. This condition can be very depressing, I well know, and it is great to feel I have contributed to making people feel a little bit better.

All the best
Andrew