I have suffered from spells of vertigo since 1999; however, they have become more serious, debilitating and frequent over the past five years. Though I had already seen about a dozen specialists, it wasn’t until I was fortunate enough to meet a neuro-otologist and her team at St. Paul’s Hospital in Vancouver that I was finally diagnosed with Ménière's disease. I also suffer from migraine associated vertigo; unfortunately, the two conditions seem to piggyback off one another.
The symptoms I experience include severe dizziness (spinning sensation), tinnitus, hearing loss, nausea, nystagmus, sensitivity to light and noise, headaches, as well as difficulty focusing and thinking at times. I also deal with a frustrating sensation spurred on by head and eye movement – I feel “drugged” and my eyes and head literally feel like they have a mind of their own.
Needless to say my life has undergone drastic changes. So how do I cope? Acceptance is first and foremost. As my diagnosis can’t be changed, I’ve had to figure out how to accept it and all of its demons for what it is. I’ve learned that once you accept the “new you” and your “new life,” you can take measures to make the most of your “new normal” and manage it the best you can. It’s not been easy to accept such a debilitating circumstance, but acceptance is the only way to move forward.
I used to wait and wait and wait until the awful sensation in my head and eyes got better before I went to the gym, for example. Over time I realized that my previous standard of feeling better and being in a manageable state to go to the gym had changed. I’ve learned to accept that how I feel now is the best I may feel for a while. I make the choice to accept my condition, push through and see what I can accomplish. I see where my limits take me at the gym – slowly and carefully. I’m not happy about the situation – and sometimes I really don’t feel well enough to go – but I’ve learned to just accept my “new normal.”
I’ve had to drastically change my career. I’ve learned to accept that I can only do so much. On my good days, I volunteer for a non-profit organization by providing much-needed PR and social media management. I’m also fortunate to have a flexible contract job where I work only minimal hours each week. This seems to be manageable.
The change in my lifestyle has been most challenging to accept. I loved hiking, running, participating in races, triathlon, going out with friends, and shopping. I hardly ever do any of these activities now. This lifestyle change has been the biggest struggle for me; but I’ve found an even greater appreciation focusing on other, more manageable interests including my love for keeping in shape weight training and using cardio machines when I’m up to it. I walk with my husband and dogs whenever I can—and if I’m lucky, we’ll get out for hikes every now and then and I’ll get the odd run in, too, on my very best days. I’ve also become best friends with online shopping. You just find a way to make things work.
I like to follow “my four Ps” – positive, proactive, patient and perspective - it’s what helps me to stay happy and hopeful.
We wake up every morning and we determine how we perceive and choose to go about our day - it all starts with our mind and everything else follows. Whether it's physical or mental, we are responsible for telling our brain how we’re going to face obstacles encountered each day.
I wake up feeling different every day. I never know how I'm going to feel physically; but I have control over how my mind chooses to deal with how I’m feeling.
It's only natural to have feelings of frustration, discouragement and negativity about how we feel - but it really does more harm than good to hold on to these emotions. My last attack was a reminder of just how challenging it can be to stomp out all those depressing and defeating emotions that naturally want to take over.
Things you can do to practice positivity include:
- Make a list of all the positive things, people and places that make you happy.
- List all the things you love in life, the things and people you appreciate.
- Be kind—pay people compliments and help others in need.
- Note down everyone who supports you.
At the flip of a switch, I could change my positive, hopeful outlook. It's very easy, especially when you're about to have another attack, for example, but I control my thoughts. I control what kind of state my mind will be in for the day and the days ahead. We need to reserve all our energy for good days and really embrace those days!
We can’t simply rely on our doctors for help – we need to take action and make the most of all of the information available. It can be helpful to research your condition by reading online articles and library books or subscribing to a magazine or medical journal. There’s a wealth of support and information out there. (Editor’s note: Be careful, too, about inaccurate information—always check the source)
I’ve found the following steps to being proactive extremely helpful:
- Connect with like-suffering people and learn from their experiences, including what medications and remedies have worked for them – mutual support has helped me follow my four Ps more closely.
- Participate in discussions with public or private forums.
- Sign petitions.
- Be open-minded and learn as much as you can about your condition.
- Forward articles and videos on to family and friends to help them understand what you’re going through.
- Track your symptoms to narrow down your triggers – take daily note of what you’ve eaten and what you’ve done as well as the temperature and barometric pressure.
There’s no doubt about it – this isn’t fun. Not at all! It’s very discouraging when conditions such as ours go on for years and years. We have to remember, however, that we do have days that are better than others – not every single day is exactly the same. After a while a pattern starts to emerge when we have attacks; eventually we realize that we just need to practice patience to get to that “good” day again.
Being patient isn’t easy; it takes practice and faith:
- Think back to previous attacks or days of feeling unwell and know that there’s always a “better” stage after the worst stages.
- Remember that pushing yourself and becoming frustrated won’t get your mind or your body anywhere.
- Try different methods and solutions to pass the time.
Keep things in perspective
Through one of the forums I frequent, I learned of a 19-year-old girl diagnosed with Ménière's. I cried when I read about her. And here I’m saying that I’m only 44 living with this monster of a disease. Perspective is everything!
I watched Living on One Dollar, a documentary about four friends that travel to rural Guatemala and battle illness, parasites and hunger as they experiment with living on just $1 a day for eight weeks. If this - and similar stories – doesn’t keep things in perspective for you, I don’t know what will. Again, perspective is everything.
Ideas to keep things in perspective:
- Each morning make a list of what you’re grateful for, the things you love, what brings you happiness, the names of your loved friends and family.
- Remember that you’re not the only one with your diagnosis – there are thousands of others suffering far worse.
- Read autobiographies about others experiencing similar symptoms or conditions.
- Watch documentaries about life and healthcare in less fortunate countries.
- Join groups – meet and learn about other people and how they cope.
- Research and educate yourself and others about your condition.
- Learn about other diseases too – it will definitely put things in perspective.
If you can accept your diagnosis and do your best to follow these four Ps the best you can, you’ll live a much happier and more satisfying life.