If there's one thing everyone with Meniere's Disease has in common, it is the first-hand, brutal understanding that life is uncertain.
Before Meniere's, I had no problem making plans days, weeks, even years in advance with confidence. Today I still make most of those plans, but with the understanding that everything in life is tentative. I hope I can keep my commitments, but I won't be devastated if I can't. Life, it turns out, goes on anyway. It's an interesting way to live, to say the least. It would be easy to succumb to fear under these circumstances as no one wants to let others down.
The fear of suffering is worse than the suffering itself. ~Paulo Coelho
Instead I've learned to embrace this knowledge as a positive thing because isn't it true that no one's future is guaranteed? At least those of us with Meniere's know this already and so when things don't go as we'd hoped, it's not such a shock.
Sometimes not getting what we want is a wonderful stroke of luck. ~Dalai Lama
I read several inspirational blogs and lean on others for support who happen to be traveling this journey with me. While skimming Tiny Buddha the other day, I came across Lisa H.'s blog, Getting to Zen, and her post Finding Peace When You Feel Scared About What Might Happen. As I was reading about her experience of how she coped while waiting for the results of a breast biopsy (everything turned out to be okay), I couldn't help but see the parallels between this and the experience of living with Meniere's.
For those who don't know, the symptoms of Meniere's disease are episodic and unpredictable. This can be the most frustrating, and fearful, part of the condition, since you simply cannot know when an attack might occur or just how disabling it will be. Not only that, but one might go weeks, months, or years doing very well. They might even think they're "cured", only to be knocked down again completely out of the blue. There's no rhyme or reason to it. A certain percentage of people, statistics vary from 5-50%, eventually become significantly and permanently disabled. So even as I breeze though this time of reprieve, I live everyday with these statistics in my head and the images conjured up from reading the accounts of those who are living through the worst of it - usually from bed or a wheelchair, their hearing limited to the roaring of constant, load tinnitus. One study actually found that the quality of life rated by people living with advanced Meniere's disease is worse than that of people with AIDS or cancer in the last six days of life. So for those of us with this disease it is no joke to have to learn to cope with the fear of the future.
I'd like to borrow from Lisa H.'s advice and tailor it to the Meniere's experience:
Limbo is not a bad place.
Living with not knowing what the future holds, or even with suffering in the moment, has taught me that the present moment is never intolerable. We make our present intolerable by placing conditions on it. For example, during an attack when I've been confined to bed for hours at a time, waiting for the room to stop spinning, yes, it is physically very uncomfortable. But it is far worse when my thoughts revolve around what I should be doing. "I should be at work. Everyone must be so mad at me for having to take on my responsibilities." "My kids must be so sad I cannot pick them up from school today." Instead, by gently bringing my mind and thoughts back around to the exact present moment I remind myself to embrace it as it is and deal head-on with what I am living. There are some things we just cannot control, no matter how much we wish we could.
Try not to worry.
I cannot add to Lisa's words, they are perfect. She says:
Worrying is useless. It serves absolutely no purpose. The past is gone and the future hasn't happened yet. Don't use your present time worrying about things you can't control.
She goes on to say, Instead of worrying, meditate, practice gratitude, become still, listen to your soul, and surround yourself with love. Yes!
Nothing is permanent.
This is so true of what living with Meniere's is like. There are very dark days where you are certain this is how you will feel for the rest of your life. The vertigo, disequilibrium, hearing loss, and deep fatigue can last hours or come and go in rapid succession for weeks or months on end. But they always change in intensity and eventually frequency. Not only do the symptoms change, but so can our perception of what they mean to us. Many of us also experience periods of normal life when we can almost forget we even have this cross to bear.
When I was first diagnosed, my doctor made a horrifying comment to me. He said, "We consider you well-managed if you have less than two or three episodes of vertigo a year." At the time, I couldn't believe I could possibly live with having two or three horrific vertigo attacks every year. That was simply unacceptable to me. If I had only known how much worse things would get before they got better. In hindsight, I am so glad I didn't know. I went on to have two or three of these attacks every week off and on for the next two years. My, how my perception of things changed during since time.
It is okay to be afraid.
I found a lot of my own suffering was caused by trying to manage my fear. Eventually, I learned to embrace it. By admitting I was afraid, I acknowledged how that felt and learned that it would not kill me. Fear is often caused by uncertainty. As it turns out, life for everyone is uncertain yet we cannot be paralyzed with fear. At least now, I fully understand what that means and I am okay with it.
Surround yourself with love.
Again, Lisa H.'s words mirror what I have learned from living with chronic illness.
Let those close to you know what is going on in your life and how you feel about it. There is no need to carry the weight of a challenge on your own. Sometimes hearing others talk can shed light on what would otherwise be a bleak situation.
One thing I have learned is that sharing that I have Meniere's disease with others and what it means for me can be a double-edge sword. On the one hand, letting family and close friends know what is going on can help explain why you seem unreliable or distant and allow them to support you. It will prevent people from speculating, incorrectly, about what might be going on. On the other hand, once you share the information with say acquaintances or co-workers, you can never take it back and it might come back to haunt you later. You might know what you're capable of taking on, but those who don't know you well might doubt your abilities to complete a project, for example. Yet again, by not sharing your situation with others, you might rob yourself of support and opportunities to learn about their challenges and how they've coped.
Deciding who to share your illness with and when must be made on a case by case basis.
Take care of yourself.
This is a constant challenge when living with Meniere's disease. Many people find that stress and overdoing it often makes them feel worse. Yet when we are feeling well, we want to be "normal" again and live each day to the fullest.
I have settled into certain habits that I try to stick to everyday which help minimize my anxiety and promote good physical health. I eat three meals a day and limit my intake of processed food. I drink water often. I make sure to set aside eight to nine hours for sleep each night. I limit my commitments. I meditate for at least a few minutes every night before I go to sleep. I seek out inspiring stories and quotes to reflect on. And, perhaps most importantly, I find things in my life every day, no matter how awful I feel, to be grateful for. Even it is just for the roof over my head and the soft bed cradling my body, I still remember that there's always someone out there who is worse off than me.
You are always going to be okay.
The older we get, the more opportunities we've had to experience something we fear. We all have things that we think, "If that ever happened to me, I'd just die." Well, sadly sometimes those things do happen and guess what? We don't die. In fact, sometimes we come away learning that we were stronger than we thought. We find that we must reevaluate our expectations and adjust them in order to accommodate things that we simply don't have any control over. We learn to identify, manage, and focus on the things we can control.
In the end, that's a beautiful thing.
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