Skills for Coping with Meniere's Disease

Stephanie wrote this some years ago. It has been a staple on this forum and I am sure others. To write this required much self-reflection for her. This is a brave and hope-inducing topic. She answered many questions for us and her advice comes from her own experience. What a good teacher who has helped so many. Thank you, Stephanie.

EXERCISE
My first Meniere's doctor told me that this is they key to surviving Meniere's. There was a time when I couldn’t walk, due to injured ligament in ankle, and he sent me to a physical therapist to give me something else to do to raise my heart-rate. Exercising at least 30 minutes a day really helps me keep depression & anxiety at bay. It also helps with stress & fatigue issues.

GRATITUDE JOURNAL
Write down 5 things a day that you’re grateful for. It helps you focus on positives in life rather than the negatives. We all have things, no matter how small, to be thankful for. Focusing on the positives can actually make you stronger so that you can deal with the negatives.. it helps you keep them in perspective.

HUMOR
Humor is a great tool. It tends to put others at ease, and can lighten even the darkest day. One way I use it is when I’m on the ground looking up at the people around me after a fall (from menieres). I love to look at their faces of shock and dismay, and privately smile at their expressions. Some are really hilarious! I use humor to diffuse the situation, so that they know I’m ok, and that we can all laugh at my antics. This makes them feel comfortable enough to ask questions if they want, or to just go on with life. I’m fine with either. As one friend said – keeping one’s composure and implying that the air is better on the ground, can be great fun if done properly.

WHY ME?
Change it to why not me? Why are so many children in the world sick? Why do things happen? We’ll never know the answers to those questions, so it’s useless to keep asking them. So I don’t ask why me? I just accept that it IS me & try to find ways to live with it.

PROACTIVE vs REACTIVE
What we think.. is what we believe.. is what triggers our actions & our future thoughts. I try to look at my situation (and whatever happens to me) as a challenge. I am different with menieres.. no way around that. I use to keep butting my head against the wall saying I didn’t want to be different. That didn’t help at all. It certainly didn’t change my circumstances. Finally I learned to look at life as a challenge that has solutions & answers, rather than as a burden. I try to find solutions to the problems I face. My husband helps here too. For example.. He wanted to take me swimming in a lake. I was terrified in case I got dizzy. He gave me a bouyance compensator vest (scuba vest – you pull a string & it inflates) in case I got dizzy. I was fine & was able to enjoy the water. He came up with a solution to my problem. Most of the physical problems we face have solutions if you can calm down enough to think of how to approach them logically. If I ever got to where I couldn’t walk alone, I’d be talking to a physical therapist & occupational therapist, as they have great ideas too. Try to approach it unemotionally, as you would a business problem. There are solutions.. they just take some thought. And know that a fighting spirit is healthier than stoic acceptance.

WHAT IF and ANXIETY
What if not? Meniere's may get worse, but it also may not. You may win the lottery tomorrow, but you may not. Why worry about what may or may not happen in the future as you have little control over it. I had a friend who once explained the difference between worry & concern, and it changed my life. He taught me that concern is good. It makes us act when we need to.. like getting to the doctor when we have a problem. Worry serves no purpose & is actually harmful to us by making us anxious. I use to spend hours in Barnes & Noble, reading self-help books.. trying to find something that helped. I found a book “Handbook of Hypnotic Suggestions & Metaphors, An American Society of Clinical Hypnosis Book”, edited by D. Corydon Hammond, Ph.D.

There is a chapter on anxiety & the most helpful part of it to me was this: It says that we make ourselves anxious by saying to ourselves that we MUST succeed, or Must do this or that, or that something MUST happen. Anxiety comes from our self-statements, not from without. It doesn’t come from other people. We make ourselves anxious. It’s our demands making us anxious. Therefore we can control it. It says: You’re going to realize that “I make myself anxious. I don’t HAVE to keep making myself anxious, if I give up my demands, my musts, my shoulds, my oughts. If I can really accept what is, accept things the way things are right now, then I won’t be anxious. I can always make myself unanxious and tense by giving up my musts, by relaxing – by wanting and wishing for things, but not NEEDING, not INSISTING, not DEMANDING them. I can ASK for things, I can Wish, but I don’t NEED what I want. Anxiety won’t kill me. There are lots of things in this world that are not fair, and that I don’t like, but I CAN stand them. I Can stand it. It’s only a pain in the ass!”

Mainly I learned from this that life isn’t always as it should be, or could be, or ought to be. Life is not fair, but we have to deal with what is.. not what might be, or should be, or could be. Worrying about what might be is a useless exercise. Try to deal with what your current reality is TODAY. You can handle today. When tomorrow comes, you’ll be able to handle it then.

From another source (a book called “Ordinary Magic, Everyday Life as Spiritual Path”, edited by John Welwood), I learned to live in the present, in the moment. Most of us are doing one thing, while worrying or dreaming about something else. When we live in the moment, the mind quiets down because we observe it instead of getting lost in it. Ex. When washing the car, think about washing the car & doing the best job you can at it. (Think only of what you’re doing at that very moment). You then feel a sense of accomplishment about it when done. I’ve found it also adds pleasure to the task at hand, and peace to your day. The book said that if we experience life as it happens to us & feel our pain, anger, sadness, joy when it happens, our mind accepts it & is able to move forward. He said if we experience it then, it won’t make us violent or act out wrongly. He said that by experiencing it when it happens, it doesn’t get the chance to simmer inside for days/weeks/months & turn us into an emotional wreck or an angry bomb ready to explode.

To me, living in the moment is what I do when really stressed. I tune out my thoughts & fears, and just deal with what I have to do right then. I know I can survive moment by moment. I don’t forget to plan for the future, but I tune out everything that doesn’t apply to what I’m doing right then & concentrate on it. I make lists of things I have to do, and prioritize them, so that I don’t forget, but don’t concern myself about the next task until the first one is done, or if it’s time for the next. In times of great stress, this is a great tool to use to get through life moment by moment, and eventually day by day, until things get easier. It quiets the mind and gives it a chance to rest and to heal. I’ve heard Native Americans have used this technique for years. It really does work.

WRITE THINGS DOWN that you want to remember. This way you don’t clog your mind with things not needed at the moment, and gives you the comfort that it won’t be forgotten. This has helped me since getting menieres.

Writing down thoughts can also help release them as sometimes I find myself writing something I didn’t even realize I was thinking.

KNOWLEDGE IS POWER
Go to book stores (with chairs) and sit & read while there.. looking for something that fits your particular need. Learning from the internet helps too. If needed, also find a therapist or someone you can talk to. Pills can help too, so talk to the doctor if needed.

MENTAL IMAGERY can be very useful in training you to clear your mind & relax. I’ve used it for many years off/on, and it really can help. It can also help you learn to put your emotions aside when trying to work at a job, so that you can function & not get bogged down by mental fatigue. There are times, like at work, when you have to do this. I think of locking my thoughts away in a file in my computer brain. When I’m done with my task & ready to deal with the emotion, I unlock the file & process those emotions. Just don’t let them sit too long or they’ll come back to haunt you later. If I’m having a hard time dealing with them, I know that one way is to sit & write my feelings down on paper. Sometimes I’m surprised by what goes on the paper. Once I understand why I’m upset, then I can become pro-active and figure out a way to deal with them.

ACCEPTANCE
A Priest once told me that having a terminal illness, or a lifetime illness (like menieres) is like facing death. He said we go through all the stages of mourning.. disbelief, denial, anger, and hopefully finally acceptance. I finally accepted menieres, after 5 years. I did it by realizing that it was not going to away, no matter what I did. I have no control over it. I can control my triggers, but I still get attacks sometimes as I can’t control menieres. Not my fault.. just a fact of life for me. I only have control over how I choose to live with menieres. So.. that is when I turned it into a challenge. I have it, it won’t go away, I am changed. Therefore I must learn to be pro-active & find ways to live with my new capabilities. I also realized that many less fortunate are born with less original capabilities than most of us have, even with menieres. They coped & have good lives. So can I. I wrote down what my new problems were & came up with solutions / plans of attack. I repeatedly do this as needed. I try to focus on what I can do.. not what I can’t do.

HOPE
Never ever ever give up hope. Hopes and dreams are what keep us alive. If we stop dreaming, we in essence give up. My new dreams may be different since getting menieres, but they are just as good as the ones before.. maybe even better. My life is richer because of my experiences.

LOOK OUTSIDE OF YOURSELF
There are so many people with worse problems than menieres. That does not make our suffering less, but it reminds me that others suffer too. I have a friend with scleroderma, where her body is hardening inside & out. She constantly amazes me with her unfailing spirit & determination to live as normal a life as she can with her circumstances. My husband’s boss has a friend with ALS. She can only move her eyes now (nothing else on her body can be moved by her), and her husband found a computer to track her eye movement so she can communicate. He’s amazed by her spirit also. How do they do this? For both of these people, their faith in God gets them through, and the love of family and friends. They also learned how to step out of the emotion & be pro-active in dealing with their problems. They found workable solutions to get them through life.

TEACH OTHERS WHAT YOU’VE LEARNED
This is something that helps me a lot. I focus on the problems of others, rather than on my own, & try to help them. I feel like if I can help them from my suffering, then my suffering is not in vain. It also gives me a sense of achievement that I was able to do something worthwhile. It also keeps me from dwelling on my problems. But one thing I always try to remember. We are important because we are. That’s a gift of our humanity that we don’t have to earn.. it just is. Our foundation is solid. We build from there.

SUICIDE
I hope this is never an option for anyone here. I have a friend who’s partner committed suicide. Since that time, I’ve stayed in touch with my friend. My friend & the partner’s family suffer untold hell because of his action. They feel guilt that they couldn’t prevent it.. even though they had no knowledge that he was going to do it. They feel guilt that they didn’t see his problem sooner & get him some help. They feel saddened by his loss & are having a very hard time finding closure. It was not his time to die yet he chose death over life (and over them). How can they find closure in that? They have no real guilt, only self-imposed, yet their sense of guilt & sadness will most likely haunt them the rest of their lives. The one who died thought that by ending it all, he would stop the misery for all. He loved them all & would have never hurt them on purpose. Yet he caused them to experience their own kind of hell that will most likely last them their lifetimes, even though they do what they can to move forward. The emotions will fade in time, but I doubt they’ll ever be erased. So.. please don’t think of suicide as an option. Problems have solutions.. it’s just a matter of giving it enough time while searching for the answers. There is help out there.

FAITH
I also have to add that I have a very strong faith in God. I truly believe that God has put people in my path when I need help the most. When I get lost, and remember to ask for guidance, He directs me. I also try to remember that God wants us to be happy. Have you taken a good look at babies lately? Have you ever noticed that they seem to be born happy and with a good self-esteem? At one of my lowest points, God put a young child in my life who taught me that God truly does want His children to be happy. Why else would they be born that way? Yes bad things happen, but through Him we can find peace and happiness again.

ANGER & SELF-RECRIMINATION
I use to get angry at myself a lot. Like if I ate salt (Meniere's trigger) and got sick. I even got angry that I GOT sick (even when I didn’t cheat), and couldn’t go out & do what I wanted (or needed) to do. Every time I called in sick to work due to vertigo, I felt guilty. That same friend taught me that I was spending lots of time on useless emotion that was only making me worse. He reminded me, repeatedly, that with menieres we’re going to get sick even if we live a perfect life. Sure avoiding our triggers help & may lessen the occurrences or severity at times, but we also know we’re going to get sick sometimes no matter what we do or don’t do. He made me see that it’s really unproductive to get angry at ourselves. Yes, we can learn from our mistakes, but even then we don’t need to dwell on our errors, but acknowledge them & learn from them, and then move on. By getting angry at myself I was making myself sick. Self-recrimination is a useless emotion that has no useful purpose. Guilt is good to help us learn, but becomes useless & actually harmful when we dwell on it. Why waste time doing this? I don’t know how to explain this one better.. it took me awhile to learn it. When I did, it was life-changing. Now, I acknowledge I made a mistake, or that I’m ill, and then move forward. I no longer waste more than a few minutes on the thought. I may write something down if I need to remember, but then move forward. I learned to realize that not only is every sunrise a new beginning, but every moment of every day is a new beginning too. We don’t have to wait till tomorrow to start fresh.

DON’T LOOK BACK except as a learning tool. I heard a quote once that went something like “History is a place to visit, not to dwell”. We all have things in our past that are painful or hard. Sometimes it’s good to look back to remember or learn something from those times, but never to dwell on the past. Dwelling there brings the pain forward into the present. Nothing useful in that, and can be very harmful.

DON’T ADD THINGS UP IN YOUR MIND
I heard a psychologist once say that women are the worst about doing this. I know I’m guilty. I can look back at the last few years & add all the hardships up & think.. wow I’ve had a rough few years. This is not a healthy thing to do. It’s better to let go of each hardship as it ends & dwell in the present.. not the past. Again, it’s OK to visit those times to learn from them.. or to help others from them, but they’re not a good place to dwell. Live in the present.. TODAY.

ACCOMPLISH SOMETHING EARLY EACH DAY
This is a great tool for confidence & just to feel good about yourself the rest of the day. I use it often. If you can do something small, such as make the bed, clean a small corner of clutter in a room, vacuum, wash a load of clothes, exercise.. something/anything (even if it only takes 5 minutes) before ever leaving the house each day.. you will be amazed at how you feel. It’s good if it’s something easily noticeable when you look at the house, but anything will do. This gives you a sense of accomplishment that lasts all day. You will know that you’ve already done something worthwhile that day so that even if the rest of the day is shot.. you’ve accomplished something already. It also gives you a sense of pride & confidence when you start your workday, as you’ve already accomplished something. A side benefit is that it helps you get things done, because if you do a small portion at a time, things eventually gets done. Doing just a little at a time also works when you feel sick/tired & can’t do much at any one time. It helps keep the depression at bay.

ANXIETY & FEAR
Most of us know why we’re anxious or have fears. I think.. what’s the worst that can happen to me. Then I look at steps I can take to prevent what I’m afraid of. I also look at what happens if my fears are realized.. what damage control could I do then to make the results turn out to be tolerable.. anything??? Most of the time there is something. Sometimes it’s about perception. Talking about things with others can be a great outlet. You can vent and often find out what you really feel by talking it out (or writing it down). And sometimes a person comes along that can give new ideas and perceptions to help you understand something in a different way. Sometimes perceptions change and healing occurs.

TAKE TIME FOR YOURSELF EACH DAY
I mentioned this before, but when working I used to tell myself I’m here to work and blocked all other thoughts from my mind. I allowed myself time later to deal with the rest. (I still have a hard time remembering this one).

MAKE A ROUTINE
When I was at my lowest, a friend helped me write out things I needed to do each day/week to help me keep going in the right direction. A routine also helps quiet the mind because as you get use to it you don’t have to think about what’s next. My husband’s way of living is the opposite of routine, so I found things I could do within my life, on a regular basis, to keep me centered. I wrote these things out & still look at them from time to time, especially if I feel like I’m falling again.

This is my list:
Take care of myself. (This is number one. If I don’t do this, how can I take care of my son/family). And when taking care of family (especially elderly or injured), as one friend told me: "All you can do is enough".

Eat healthy. Most importantly -- stay away from salt & all other food triggers (for menieres).

Exercise EVERY day.

Get out of the house at least 3 times a week & interact with other people. (This one I started after I quit working. I didn’t want to ever feel trapped at home, and didn’t want to loose my people skills so that I’d be afraid to get out in the world again).

Be positive & not self-destructive (I use to have a lot of self-anger & until I learned to stop that had to remember not to punish myself with overeating or self-recrimination).

Be happy. (Happiness is a choice / a matter of perception. I don’t feel I have to be giddy with happiness, but at least try not to go around thinking about how hard my life is, or how sad or scared things make me. I once read a quote.. “The time to be happy is now”. If not now, then when? This is where coping skills really help. If I deal with my emotions, I can move on & feel happy, or at least peace, even when things are very hard).

Remember the Serenity prayer.. mainly to accept the things I cannot change & to change the things I can. (Ex. I can’t change the fact that I have menieres, but I can change the way I deal with it. Another ex. I can’t change the fact that my hubby had a bad auto accident & that the local doc injured him further. I can & did complain to different agencies about the doc in the hope he doesn’t do it to anyone else). I can try to make the best of what happens to me or to us, and maybe use our experiences to educate/help others. Mainly I can accept things as they are (not what they should be, or could be) and in accepting find inner peace and happiness again. (Remember that acceptance does not mean giving up. It simply means changing one’s perception and the way we deal with life internally, into a more healthy and productive way. It means and end to butting one’s head against a figurative brick wall in the hopes of changing something that will never change. It means using the emotions to move forward instead of fighting oneself over what can never be).


Along those lines, something else I learned from a friend at my lowest point. I can’t change what comes out of peoples’ mouths when they speak (or type), but I can change my reaction to them & only take those words that mean something to me to heart. The other words are just words.. nothing to get upset or angry about. We all have different perceptions & views of life. If someone’s thoughts or views don’t help me to grow as a person, or help me in any way, then I don’t take them into my heart. The words cannot hurt me if I don’t accept them. However if the words are helpful, then by taking them into my heart they are powerful & can be life-changing. By looking at words this way, I don’t feel the need to defend myself if verbally attacked, as the words don’t hurt me. I know who I am & what I believe. Their words aren’t going to change me unless I accept their words & let them.

When starting at the bottom / feeling very low, I start by making a routing & accomplishing something early each day. Exercise helps tremendously so I make it a part of my routine. I try to live in the moment & don’t dwell in the past or on the future. I write things down so I don’t have to constantly think about them. I think only of today, and of each moment as it happens. If I need to make a doctor appt, or plan for something in the future.. I do it, write it down, and then go back to living in the present. I take each moment, and each day as it comes. If I'm waiting on something like test results, I put them from my mind until I hear. Until I do they are not part of my reality as I don’t know what they’ll be. I don’t know if the results will be bad or good & there’s nothing I can do to change them, so I live in the present & don’t worry about the future. Today I can feel at peace as I haven’t heard any news. When the news comes, that will be my reality then, and I’ll have facts that I can work with. Only then will I know if I need to make changes or plans.

My belief is that by taking life moment by moment, one can handle anything.

Ok, that's my list of coping skills and perceptions. How do you look at life, and what do you do to survive it?