Each day with Ménières is a blessing and a curse. If the sun is shining and the pressure is up if may have a good day! These you have to hold on too! Take photos of them and look at them on your bad days! As a big spin or (for me) spending too much time waiting for your prescription in the chemist or having to go to the shop. Can change that good day in a second, your spinning and that’s it your gone! You Have to lye down or stop where you are and sit!
You can’t make rigid plans, you may have to change them at a moments notice, it’s not a cold that you can put a brave face on and carry on! It’s not just pain you can overcome. It’s your balance and vision, your speech and brain function. All become impaired. You simply can not function.
This is why it’s so hard for people to communicate to others who are around them, who don’t have the condition why you find life so hard. So frustrating, so debilitating, your trying so hard to be ok, you might look fine! But you’re not!
Like me in these photos… make up is fantastic! It’s my eyes that are the give away! When I’m spinny my eyes tell the story. Or my gait might be wide. People that know you will be able to tell how you are by looking at you.
My children and my poor mum suffer on a daily basis due to my condition. I have lost relationships due to my condition, pushing people away. My eldest daughter was a young carer at the age of 8 and would help manage medication and administer Valium and anti sickness medication if I was in attack and put me to bed. No child should have to see their mother like that. Crawling on the floor, being sick. But she is amazing and now at 10 she is an accomplished young lady with huge empathy and understanding for others and a massive support to me. She is my best friend. My youngest daughter is now 5 and she too now knows the importance of my tablets and the dangers! I struggle every day with the school run and often go to bed when I get back. Mornings are always a challenge as it takes me a a few hours to get on my feet after being in bed all night flat.
The children are very understanding but I feel terribly guilty that I can’t do what normal parents do. I can’t go to a park, the movement triggers my symptoms. No museums, any busy place are out for me. No shopping. So they have other people to go with. But I have to live with that.
Nobody sees this side to Ménières, I do have a severe case of bilateral Ménières. My consultant said this too me. He did say he has never come across someone with it this bad. Not everyone has it this bad. Some unilateral meniers manage to work and function to some degree. If it’s one sided it’s easier. We have to deal with the cards we are delt! So as someone recently told me… “don’t throw in the towel” keep going and “be strong”
My children and family are amazing I just wish they didn’t have to live with this as it isn’t just me it affects.
Ménières Suicide or Survivor 