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Author: Ménières Suicide or Survivor
Loving passionate Mother of two trying navigate my way through a new kind of life I find myself in through no fault of my own.
I suffer with bilateral Ménières, on many medications and tried skull surgery to no good outcome. It’s a living hell. I am a retired primary teacher who had a fantastic career.
How do people we Ménières live with this horrific sentence? That is what my site is about... me, my journeys before...during ... now! My coping strategies and not coping...
It’s a rollercoaster, but that’s my life, I never know from one minute I the next how my day will be. Spinny, dizzy, sick, ear pain pressure yes pretty much always, attacks or non. Can I maintain the “I’m ok” face or not.
What I will say, I want to help and support anyone, it’s a lonely and horrible journey. Nobody really understands. Unless you have been there. If I can help one person I will be happy and raise awareness of this debilitating life changing and obliterating condition that is Ménières.
Shopping and every day activity… to
Where do I begin… well shopping is almost impossible! I can do a bit on a good day with support, and sunglasses… that gets attention!!! Not pleasant and I don’t do it very often at all!!
Am I on my own in this?? 
Supermarkets are bright, full of visual stimulation which is impossible for my brain/ balance to process… I feel spinny and sick ears bulging and wining verging on attack. It has been known for me to puke in a trolly! Yep! Yuk!
I can’t remember what it’s like to shop for real in a town centre… but not possible now. At all! Or to be in public much.
If I do try to shop on line it’s laughable… an example I have just shopped unsupervised for Christmas and ordered 3 pairs of the same size trainers for my daughter! I did the same last year double clicking as I can’t see straight and organise myself. Thankfully I have help for my site!
Following appointments… I misread them, forget them or forget to look at the calendar! You just could not write it if you didn’t live it.
I ask you … if you lived on a constant roundabout how successful would you be at concentrating?
There you go! Case and point!
But you can’t see it, it’s hidden, trying to explain this is impossible. Unless you live it. Please leave your comments and experience.
I do believe Tesco plan to have an autism friendly quiet time… dimmed lights etc. this could also help people with vestibular issues!
A lady questioned me at the till when I was struggling, spinny and couldn’t speak… she told me about it.
Also another word about this… the autism hand waving initiative… which may help one group would be devastating for people with vestibular and balance issues… just saying! If it’s not broken… ear plugs… I was a teacher… I made sure I looked after every child in my classroom. But this could destroy many. Their is nothing wrong with hand clapping… I have to wear sunglasses, people with just tinnitus wear ear plugs…
we all have to find a way of coping!
Try to walk a mile in the shoes of someone with Ménières
twitter.com/davidintherain/status/1072093902755250178
your balance system does not work, you can’t see or hear properly, you get funny looks for wearing sunglasses. Your gate is wide to keep balance as best you can. You may stagger or fall… people assume your drunk!
When you don’t respond or move for a car your ignorant… no you just can’t hear!
Lip reading is exhausting. Withdrawal is easier. Staying indoors to avoid triggering your condition is easier.
That’s not even going into the sickness with your stomach on a full spin cycle and the pressure and pain in your head and ears. The tinnitus is the easy bit!
Walk in our shoes! Any takers? …
Making sense of the world and your new world with Ménières!
Headspace yesterday really helped me understand that we cannot choose the world around us, nor can we always despite our intellect make sense of it.
Trying to do so can cause more pain and anxiety. Try and make peace with the world and your Ménières day by day and minute by minute.
When the good days come make the most of them! Appreciate your family and friends and any bit of joy in your life.
I wish you all well xx
Local MP supports Mental Health… now she knows about Ménières too! Let’s keep raising awareness…
Are you a human barometer? Can you tell when the pressure changes like me?
The power of partners family & friends!
Please share!
If there is one thing I have learned in my journey this far it’s that your loved ones no matter who they are, are the most powerful medication and solace in your life!
They are always there, they understand love and support you. Despite the demons you face. Even though you may hurt them on your journey.
Do not push them away through depression, paranoia or anxiety. They love you. You may think your not worthy of their love, that keeping them around is too hurtful but the opposite is true. Be honest and talk about your thoughts and feelings.
It is as hard for you as it is for them, if not harder. If you feeling out of control seek help in your GP and trust them, no shame.
If your as lucky as I am to have such wonderful people in your life then 
it is worth…
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Ménières Suicide or Survivor 