Three Powerful Lessons I'm Learning About Living With Meniere's Disease

It's only been a couple of weeks since I was officially diagnosed with Meniere's disease (after experiencing my fourth really nasty vertigo attack in two-and-a-half years).

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.

Practicing gratitude

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

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.

A long overdue update and a preview of the next chapter in my health journey

Back when I was reading weight loss blogs on a regular basis, I used to worry when someone who had been blogging about their weight loss struggles suddenly went AWOL. Were they okay? Were they still on track in terms of losing or maintaining the weight? Why had they suddenly stopped updating?

And now I've become that person! I just noticed that I haven't updated this blog in over two years. The good news is that I'm still very much on track. In fact, last month I celebrated my two year anniversary of successfully maintaining my weight loss. Sure, the scale jumps around a bit (generally within a five pound range but sometimes a little more than that) but because keeping a food diary and tracking my daily activity have become second-nature for me, I find it pretty easy to simply tweak what I've been doing and get the scale moving in the right direction again. This is the first time in my life that I've ever been successful at maintaining a significant weight loss, so it feels like a pretty significant victory. My game plan at this point? To keep on keeping on....

You see, here's the thing: the strategies that I learned on my weight loss journey have proven themselves to be essential for dealing with my other health challenges. Being active on a daily basis isn't just helpful in terms of maintaining my weight: it also helps to tame my anxiety (a pretty big deal for someone living with bipolar disorder) and it helps my vestibular (or balance) system to function at its best (again, a pretty big deal for someone living with Meniere's disease).

And, speaking of Meniere's disease, I'm going to be blogging about my journey to learn more about this particular balance and dizziness disorder. I was just diagnosed a few weeks ago (after an audiogram and an MRI), so my learning curve is pretty steep and I'm eager to share some of what I'm learning with my fellow members of Club Meniere's. I plan to share strategies for living well with a chronic medical condition because that's what I intend to do. (Sure, Meniere's disease isn't the best possible diagnosis, but it's not the worst either. Not by a long shot.)

Switching to maintenance on my two-year weight loss anniversary

So today marks two years since I started out on this weight loss journey.

I haven't missed a day of food logging during that entire two-year time.

I am convinced that daily food logging -- and regular exercise -- are what have allowed me to stick with this journey of transformation.

I'm recording a slight increase on the scale this morning. I'm up four pounds from my lowest weight. I'm pretty sure it's related to sodium/carbs/hormones, but I wanted to have an official weight recorded as of this morning, to mark this two-year milestone.

I am officially switching to maintenance, as of today. My weight has been pretty stable for the past few months so I think it has settled into the zone it wants to be in. I could try to force the number on the scale a little lower by increasing my exercise and/or decreasing my food intake, but any changes I make would not be sustainable over time, so what's the point? (In his book The Diet Fix, weight loss doctor Yoni Freedhoff suggests setting a goal weight based on the least amount of food you can be satisfied with. I think that puts my weight at around 160 lbs., plus or minus a pound or two to account for normal weight fluctuations.) This will mean "settling" for a BMI of 26 as opposed to getting to a "perfect" BMI of less than 25, but I think I can live with that. After all, two years ago on this day, my BMI was 46.6 and I had given up hope of ever losing a significant amount of weight.

So my two year anniversary gift to myself is the gift of self-acceptance and the gift of weight maintenance.

Still Going Strong!

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Yep. The headline says it all: I'm still going strong, nearly two years into this journey. And what a journey it's been. As I write this, in mid-December 2014, I am within four pounds of a healthy BMI, for pretty much the first time ever. (I was at a healthy BMI for about five minutes before getting pregnant with my first child, back in 1988.) I have lost 19" from my hips, 13.5" from my waist and 12" from my bust -- and I've gone from a size 26/28 to a size 14 (and the size 14 is getting a little baggy, to be perfectly honest). 

But that's just the number on the scale. The scale can't measure how happy and healthy I feel. That's what I wanted when I set out on this journey back in mid-January of 2013: to experience greater health and happiness. What I hadn't counted on back then was how much I would come to love being physically active. My twice-daily walks help to boost my mood, reduce my anxiety, and fuel my overall feelings of wellness.

I've written two articles about my journey. The first appeared in the October 2014 issue of Canadian Living and featured a rather glamorous photo of me. (This is likely the one and only time in my life that I'll have the chance to play supermodel, so I'm sharing the photo spread with you.) The second article appeared on the Fitbit website when I was featured as a Fitbit Success Story. (As you may recall, I wear a Fitbit Flex exercise bracelet to encourage myself to log 10,000 or more steps each day.)

Thanks to blog reader Lillian, who encouraged me to write this update. It's something I've been meaning to do for a while and I was feeling more than a little guilty for not letting my community of supporters know that I'm not merely doing okay: I'm thriving. Thanks for your continued support, everyone. I really appreciate it.

 

Winter Update on My Weight Loss Journey

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I haven't updated this blog for a while -- about five months, to be precise -- but I'm still very much on track with my journey to a healthier me. (At some point last year, this became so much more than just a weight loss journey. It became about fitness and nutrition and becoming comfortable in my own skin.)

So here I am, thirteen months into the process of reinventing my life at midlife. Once I let go of my initial fear of making these changes (fear of failure; fear of being judged), the rest was easy.

I am so happy that I took the chance: that I risked the fear of failure. I am now down 109.8 lbs. from my initial starting weight of 286.6 lbs. At 176.8 lbs., I am now merely overweight as opposed to morbidly obese. My BMI has dropped from 46.3 to 28.5. I am just 22.8 lbs. away from achieving my goal weight of 154 lbs. Best of all, I finally feel comfortable in my own skin.

A few more updates and observations:

  • I continue to reap the mental health benefits of being physically active on a regular basis. My default state of mind is now happy-calm as opposed to anxious. Family members keep asking me why I'm smiling all the time....
  • I continue to push myself to achieve new levels of cardiovascular fitness. I measure this in real-world terms: my ability to tackle hills at the cottage with ever-increasing gusto; my ability to run errands for hours at a time without ever getting tired. 
  • I continue to log my food on a daily basis. I will probably do this for the rest of my life. It seems like a small investment of time to make in exchange for keeping myself on track nutritionally.

So, life is good. I've finally figured out what contributes to a happier and healthier me. I plan to continue to work that plan.

The journey of a thousand miles begins with a single step.
— Lao Tzu