Menieres has been like a rollercoaster ride that has scooped me up and flung me about and turned me upside down. I’m currently in the middle of a relapse and I can’t work, but I wanted to write a positive article about how I try to keep living a happy and fulfilling life, despite my health.
In the past, when I turned to internet forums and support groups for help, I found myself overwhelmed by the pain and challenges faced by fellow Menieres sufferers. I instinctively shut my computer down, realising that I couldn’t cope with other people’s turmoil on top of my own. This illness can be such a challenge that I think there’s a real dearth of positive messages in the public sphere and this article is an attempt, in my own small way, to redress that.
It’s been three years since my diagnosis and, although it’s still a rocky road, I’m definitely much better at handling the condition than I was before. I wanted to share the three key things that help to keep me on track. It’s the sort of article I’d love to have come across when I searched for help on the internet and I hope it will help others on the same journey as me.
1. Reach out
Menieres is a lonely disease. Outside your close family, no one really understands the torments it can push you to. The nights when a vertigo attack hits and you cling to the side of your bed for fear of being thrown out. Or when a sudden loud noise on the tube ramps your dizziness to the max. Or when you pick up the thread of a conversation incorrectly because you’ve misheard a word and your own children stare at you as if you are a complete fool!
I’ve learnt that reaching out in lots of different ways is essential. Some are obvious. I call up my friends for a good old chinwag. I talk to my ever-patient husband. I text funny photos of the kids to my sister. I trade banter and insults with my two best mates on What’s App.
But some are new. I’ve started writing. I follow a practice called Daily Pages. I write for 15 minutes in my notepad as often I can. I just let my thoughts flow and scribble down anything that comes into my head. I don’t self edit or over-think it. I just write. When my time is up, I close my notepad and get on with my day. It might sound odd, but it’s wonderfully liberating.
In fact I’ve got so hooked on writing that I’ve now started writing a blog. I write about trying to carve out a new career for myself amidst the fog of Menieres. The emails I have received from friends and family in response, have been so crammed full of advice, ideas, love and support that it’s genuinely been one of the most life-affirming things I’ve ever done.
2. Plug the gaps
Sometimes it can feel like Menieres is on a relentless mission to take away all the things you hold dear; work, your hearing, driving, the pleasure you take in silence, balance, confidence. I’ve learnt that accepting what you don’t have and then trying to seek out other things that bring you pleasure is essential. This is so easy to say but so hard to do. Some days I’m more successful than others.
For me, it means trying to treat the fact that I can’t currently work as a blessing. I’m using the time to try and find a new career path. And it’s proved so valuable. I’ve listened to more podcasts, read more books, written more, thought more and learnt more in the last few months than I have done in years. And I’ve now got a load of new ideas about the direction I could take my career in.
3. Protect your mental health
This is so important. People with Menieres are much more likely than the general population to have or develop a mental health condition.
I’ve experienced this first hand. Two years ago, my husband and I requested an emergency appointment with the doctor. My hearing was fluctuating so wildly and the tinnitus I was experiencing was so intrusive, that I was struggling to stay afloat. In the appointment, I burst into flood of tears and begged the doctor to give me something to make me feel better. The anti-depressants I took were a much-needed crutch through a really tough patch in my life.
Fast forward to the present and I no longer take anti-depressants, but I’ve learnt that my mental health needs protecting with kid gloves. The most important thing I have to do is keep my brain occupied in the aftermath of a vertigo attack. I have to build myself a bridge out of the really tough moment back to my normal life, because otherwise I risk falling into a deep dark soup of negative thoughts.
I’ve even written myself a list of the things that I know will help me back over that bridge. It starts with simple things. If I can’t move because I’m still spinning, I grab my headphones and listen to a comedy podcast. If I can move, I take a long walk, go to a café and write my heart out or see a friend. And if all else fails, I give myself a break. I curl up in bed under my lovely soft duvet, watch a film and hope that tomorrow will be a better day.