Three Powerful Lessons I'm Learning About Living With Meniere's Disease
Since that time, I've been spending a lot of time learning as much as possible about this challenging and often frustrating disease: reading books, downloading large portions of the Internet, and connecting with other people who are living with this particular disease.
My goal? To continue to live the best life possible in the wake of this particular diagnosis.
Here's my thinking: it’s not the best diagnosis in the world, but it’s certainly not the worst either. Not by a long-shot. And a diagnosis is a path forward.
So here are a few things I've learned so far. (Think of this as a postcard from one of the newest members of Club Meniere's: a club with some pretty brave, courageous, and inspiring members, incidentally.)
1. There's no one-size-fits-all anything when it comes to Meniere's disease.
Symptoms (there are four core symptoms plus some additional symptoms that may try to hitch along for the ride) and triggers vary dramatically from person to person. Ditto for the severity of the disease (which can range from "mildly annoying" to "downright debilitating"). And, just to shake things up even further for anyone trying to get a handle on the disease, symptoms and triggers can morph dramatically within the same person. You can have good days and bad days and downright horrible days. And the disease can get worse or better over time. Bottom line? It's the ultimate shape-shifting disease.
2. Intuition and self-awareness are key when it comes to identifying triggers and managing symptoms.
Because there's no one-size-fits-all experience, you have to commit to becoming the world's leading expert on your own experience of this disease. For me, that means really tuning into what's going on with my body and my mind (the stress piece of the puzzle!) and taking time to track and learn from my own individual symptoms and triggers.
3. Staying positive is so important -- and there's always something to be positive about.
Yes, this is a challenging illness, but it's always possible to find something to feel positive about: even on a day when the room is spinning and you're spending too much quality time snuggled up to the toilet.
Having a so-called "attitude of gratitude" (while keeping it real at the same time!) is key for me. Here's a list of things I personally try to remind myself to feel grateful for on even the roughest of days:
- I have incredible social support (an amazingly supportive husband, the world’s best sisters, a very kind and caring dad, kids who love me, some really amazing friends, etc.)
- I am resourceful. (I am good at researching problems and identifying potential solutions.)
- I am resilient. I have been through other really difficult experiences and I have always managed to find purpose and meaning as a result of working through them.
- I am super healthy and have solid coping skills in place (the result of all the hard work I've been doing on the health front in recent years).
- I have the financial resources to be able to take full advantage of physiotherapy and anything else that might make me feel better. (I'm not super-wealthy -- hey, I'm a Canadian author! -- but I also don't have to live with round-the-clock financial stress.)
- I have a job that allows for flexible working arrangements. (I’ve been scaling back because I need to minimize stress, but I don’t have to worry about walking away from a full-time job that my family is depending on for grocery money.)
Positive self-talk in the moment is also really helpful for me. (Well, at least most of the time: like everyone else, I have my down days.) When an acute attack of vertigo hits and I'm throwing up for a couple of hours, it's easy to hit the panic button and start to worry that I'll always feel as miserable as I'm feeling right now. In addition to practicing relaxation breathing and working at being mindful (as opposed to allowing my mind to endlessly cycle through all the "what ifs"), I try to remind myself that my attacks only tend to last for a couple of hours. After that, my symptoms tend to become much more manageable again. And I've already proven that I can cope with that. I just need to work through the process again....
Taking stock of progress
I also find it really helpful to take stock of the progress I've been making. For example, I know my vestibular system is getting stronger as a result of my six weeks (and counting!) of vestibular rehabilitation therapy. I can do amazing things with eye movements and balance exercises that would have been unthinkable a month ago. And I'm learning to treat my vestibular system as a valuable resource that needs to be protected. Sticking to a regular daily routine (one that prioritizes sleep, exercise, healthy nutrition, and stress management) and working part-time hours seems to be resulting in a much healthier me (at least until the next really severe vertigo attack inevitably hits: hey, I'm a realist). I’m also really looking forward to my upcoming eye doctor appointment. (I know that my eyes are a big piece of the puzzle for me: no big surprise given that I'm legally blind in one eye.)
So there you have it: a few musings and preliminary observations from someone who has just been diagnosed. I intend to share more of my observations as I learn more about this thing. In the meantime, a special thank you to everyone who opened up about their own experiences with Meniere's disease in recent weeks: the people I knew personally who are living with this disease, the friends-of-friends who agreed to connect with me, and those random but incredibly supportive and generous strangers in online support groups. Peer support is magical. Hearing reassuring words and practical advice from someone else who has walked this same walk makes all the difference. Thank you.