With the right approach, you can become a better patient advocate to help your loved one navigate the complicated waters of chronic illness.
— Read on www.mindovermenieres.com/how-to-patient-advocate/
Category: Uncategorised
Hoodie’s and T-shirts on the way! For Survivors and Supporters!

watch this space!! Available soon…
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?
Ménières; anxiety and depression
Ménières has for me completely changed my life. I was successful teacher with an amazing career I had worked exceptionally hard to be the best I could be. Now I can not bare to be in or around the school environment. I am no longer the person I once was. This is impossible to come to terms with… so I try to lock it away and embrace what I have now; which isn’t much but dispite the cloud that is Ménières I have to remember there is always a blue sky above the clouds!
Sometimes it’s hard to remember that!
Menieres is such an unpredictable condition you can’t make ridged plans as your condition can change so quickly. So can your anxiety levels. Your fight and flight (like the feeling you get if your attacked or confronted in an argument, or go down a drop on a rollercoaster) kicks in, this level of panic starts as the vestibular system within the ears can’t process the information to the brain because the ears are filled with fluid. Your balance becomes affected thus affecting your abilitiy to process the movement of others, depth perception and noise around you antagonises the vestibular system. If bright lights are thrown into this situation you have a recipe for disaster. This is where Valium (diazepam) is prescribed for patients with active Ménières to control this flight and flight, we feel no effects of the Valium it mearly takes the edge of the anxiety caused by our faulty feedback.
I have been prescribed anti depressants on a few occasions now as I had hit crisis point. Unable to cope with my condition only seeing one way out! (Not living with it anymore) The sad truth is the suicide rate for people with Ménières is very high as there is no cure and no real way of dealing with it. I myself have a very close relationship with my GP surgery and an alert on the system where if I need contact with my doctor I can see or speak immediately. I have found this necessary especially after my failed surgery. Then again recently when I went into yet another downward spiral. This is when I decided to set up this site by way of support and therapy. Although I must admit it’s been tough to do.
I know I’m not on my own in this, if you have very active bilateral Ménières suffering constant attacks, daily spins and imbalance and have limited quality of life then you will understand. I appreciate some people are unilaterally affected and may not suffer in this way, you are very fortunate. But for those out there who are… reach out, don’t suffer alone, you are not!
When you find yourself making plans of how you intend to end your life… you need to seek help immediately! You need to seek help! When I was at crisis point and making plans, I wasn’t talking to anyone… this is the dangerous zone! At that point you have gone past the point of feeling, your numb, too depressed to think or care! I made myself go to the doctor, don’t be feared of loosing your children, don’t be fearful of judgment. Your seeking help. It’s ok. I sought help for my children that’s the only reason. I need to be here for them. I felt terribly guilty for not wanting to be here because of this horrible condition. But how would they feel about me if I did that.
To sum up Ménières causes dreadful feeling of anxiety and depression, no there is no cure, but some days are ok. You have to make the most of them. Embrace the sunshine (going and standing in the sun saved me once when I had made a plan to end my life…) and remember there is a blue sky above those clouds!
You are never alone! Seek help, there is no shame in getting help. You need it…
