COPING WITH MENIERES DISEASE
Positive Mental Attitude (PMA)
Written by Keith Parsons
Every so often I tend to lose a farily missive type post in the hopes that my experience, my learning, my words will reach out and help someone in a small way to deal with this affliction we all carry within us. This is one of those posts. Composed over a few days, I apologize in advance for its length in advance (very long but worth the read)
For some of you this may be a rehash of things I have previously said, but for those new to our list at the very least, I hope it brightens the light we all need to see at the end of the MM tunnel. As a background, I joined the former coping list at the menieres.org site in December 1997 while in the throws of what became a 4 month continual drop attack. At work, at home, on the train, in the car, on stage playing guitar, during sleep, while awake, the attacks were relentless and for the first time here I confess that suicide was seriously on my mind. I could no longer live like this, until I found this list. Everything that follows has been gleaned from comments posted here since my joining. I have experimented greatly to better understand what MM is, what it does, how it does it, and what we can do to gain control of our lives back.
I am not a doctor, by profession I am a computer security weenie and a rock guitarist and dabble in woodworking and play some sports. And, I am also an MM coper just like you. To hopefully assist you better, I have put these sections into a chronology that I believe is inherent within all of us with one feeding the other and building up within us.
These suggestions I offer are just that, suggestions. They have worked for me and I continue to follow this regimen every single day and can say to you all honestly, I am having many many more good days than bad days. Please also know I do not believe that MM goes into remission nor is it curable. We will live with this ailment for the rest of our lives or until a cure is found. The following is offered from me with Peace and Love to all of you.
ATTACKS
By far the worst symptom and condition of MM is the drop attack. While it may take different forms and degrees of severity, I believe we can all agree we are extremely dizzy, very nauseous and may have severe vomiting throughout the attack's duration. How these attacks occur may have to do with our diet, stress levels, weather patterns or other unknown triggers. What we do know is when the attack hits, we are "out of it".
FEARS
Once the attack has hit, it has been my finding that I am very much mentally awake and aware of what is going on. I know that I am dizzy, I know that I will be sick and I know there's not much I can do but ride out the storm. The fear we all feel or have felt is one of not knowing why this is happening or what is about to happen. Once you can overcome this fear and accept the attack for what it is, a symptom of MM, you have started to try and following what I alluded to say in the Suggestions portions below.
STRESS
The attack has occured, you are lying on the floor spinning and vomiting and are very much afraid. Those factors have already started to increase you stress level which will feed back towards the attack you are in, thus making it longer, and may even be a precursor to your next attack. As many of you know, attacks seem to follow one right after the other. Before you have had a chance to recover from the current attack, the second one is already being fueled and will likely hit within a short time period.
ANXIETY
The current attack has subsided and you are starting to feel better. The fear has left you and the stress is under control. The slightest tweak of something immediately focuses your mind back to the attack you just had. That is the anxiety building up which has been fueled by fear and stress. The more anxious you become the greater the stress level, which in turns feeds directly back into your fears causing another attack. As you can see, the pattern has completely reversed itself. From attack to fear to stress to anxiety to stress to fears to attacks. That in my opinion is true cyclical nature of MM.
DEPRESSION
Once we can resume a level of rational thought, depression quickly invades and takes over our complete mindset. This is where the "Why Me"?, the "Is this me for the rest of my life"? and the "I can't continue to live like this!" scenarios creep in forcing us deeper and deeper into depression. Those, coupled with the extraneous events of our daily lives such as work, family, friends and stuff, pile up onto us making us want to end it all as quickly as possible. I would say there is probably very few, if indeed any, of us who have not asked the Lord or whatever we believe in to just end it for us and release everyone from our misery as well.
SUGGESTIONS
Again, my friends, I am just an ordinary guy, an MM coper like you and have no professional training. What I do have though, is first hand experience with all of the above. That experience along with my long standing "PMA" towards life, my endless questions to these good people on the list and some rather gut wrencing experiments have given me a regimen that works. I the same order then, I offer some suggestions in coping with these 5 major elements of MM.
ATTACKS:
Know it is real, ride it out and it will pass in time.
Lie down on your back in a darkened cool place or whever you are
Try to have your head elevated slightly to prevent gagging or vomit
If someone is with you, let them know you are in an attack mode
Open or close your eyes, whichever works for you.
Relax and take deep even breaths
Try very hard not to think of the attack, try to develop a mental mantra
Where possible try to talk to someone about how or what you are feeling
Allow enough time for the attack to abate
FEARS:
Attacks are a part of MM, nothing more nothing less
Don't worry about where you are or who you are with
You know what this is and why it is happening, its part of your illness
Don't mentally dwell on the attack, let it happen and pass
STRESS:
Stress from exterior sources can and will trigger an attack
As much as possible minimize all the stress in your life along with diet, salt etc.
During an attack free your mind of all stress (VERY IMPORTANT)
ANXIETY:
Do not think of the next attack being around the corner
Try to understand what you are doing prior to the attack
Ensure you are doing as many of the right MM things as you can
Don't think that everything you do will lead to another attack
DEPRESSION:
This is by far the hardest one as our minds and bodies will always tell us one way or another that we are sick
Remove the mystique surrounding MM with family, friends and co-workers
You can't hide MM so don't even try
Know you will lose some people contact and your life will change and accept it
Reach ot to others with MM for the help you need
Above all else, be honest with yourself, you are going to be ill for awhile
I know this sounds like a lot and it, but it does work. You can't expect to handle these all at once so don't even try. If you can print this out, hilite the suggestions and try to add a new one every week or day if you. Above all, share what you are feeling with those who understand what you are going through. One of the greatest things MM has given us is each other. Because of this list we will gain control of our lives and handle this disease each of us in their own way. For me personally, because of MM, I found Maria and she found me and for that I am ever grateful. If anything said herein offended or bothered anyone I truly apologize for that, I am only trying to help in the only way I know how, communication.
One who is overcoming (and hopefully helping others to do the same) bids you,
Peace and Love Everlasting
Your friend, brother, chum, Baby
Keith
Many of you have asked me privately about the Postive Mental Attitude I use to cope with MM and just about everything in life. As some of you wrote, "that's easier said than done" and "OK for you Keith, you got it, now how the heck do I get it?"
Well it is easier said than done so the quicker you stop talking about doing something and actually getting something done the better. Yes, I have it, and it took me a long while to get it cause no one could show me the way. Remember the old saying, "Trails are where others have already been"? I had no trails to follow so I blazed my own. Hopefully this note is not as long as the previous one and able to set you onto the trail a little bit so you can actually blaze your own trail. So again apologizing in advance for its length and hopefully not offending anyone's sensibilities, let us embark.
PMA is about, of and for you and you alone. You alone must learn it, practice it and refine it for it to work best. PMA is about one's self although it is not about being selfish. In the very beginning though you need to be a little bit selfish and self centered to develop your own process and thought patterns. Think back to some of the happiest times in your life. What made you happy? Why were you happy? AND, do you get happy even today when you think about this time? This helps you to form a mental mantra, a place where you can go to be peaceful, quite, happy and whatever other good feelings than can occur. My mantra goes back to my youth and consists of a warm summer day, a big old oak tree, a grassy hillside and a babbling brook. Spent many a young teen day there with buddies of both genders enjoying life and new experiences. The times were innocent and I was a sponge for knowledge and adventure. Whenever I go back peace and tranquility surround me and I can actually hear, see and smell what it was once like.
Your mantra is your safety net and security blanket and allows you to retreat when necessary.. In the grand scheme of things for me retreating there is my last resort and works almost 100% of the time for me. The key to PMA is being POSITIVE. So, how can you be positive when you are tossing your cookies? Well, you can be positive, this is towards the end of the attack cycle. You can be positive you'll be hungry and thirsty afterward (humor is also a big part of being positive) and you can be fairly positive you will survive the attack.
Almost everything we do and are confronted with in our daily lives can be split between positive and negative. It is important to always go after the positive side and when necessary to turn the negative side into a positive and celebrate it as a small victory. As a prime example, I had a vertigo attack with Maria back in May. The negative was the attack but what I focused on was how Maria reacted and and was able to help me with the full understanding of what I was feeling at that very moment. This was definitely a positive for me. Almost any situation can be defined in negative or positive terms and the trick for us is to quickly find the positive and focus in on that. It can be done and I am living proof of that.
Some folks also asked me how you can stay positive when friends and family are abandoning you because they don't understand MM. The positive in all of this is how you handle it. For me I simply asked them, "What if the tables were turned and you had MM and I didn't? How would you want me to react? How could I be made to understand what you are feeling? How could I help you when you don't look sick?" Many "normal" people are stunned by those questions and often they start to see what you mean and become more aware of your condition and become helpful. I have also used a fairly low -down tactic to achieve a positive for me in this scenario especially with friends by asking them "What if I didn't have MM but cancer, AIDS or another fatal disease? How would you feel then? What if I had a rare disease that caused my skin to have large pussy scabs oozing all day? Would you then truly believe that I am sick?" The reason these kinds of pointed questions are positive for us because it allows us to turn the tables towards those who many doubt what we are saying and suffering from and allow them to think for themselves... "Geez what if it was me?"
I appreciate how hard it is to be positive. And please don't confuse positive with perky and other such obvious signs. Being positive means finding the little victories that most folks take for granted on a daily basis but are so special to us. You have often heard the phrase I use everyday "I WILL DO THIS". That is being positive and a big difference from saying "I CAN DO THIS". For most things we face, of course you can, but will you? That is the $64K question.
Look at all the negatives in your life right now and be objective in assessing where the positives lie. Once you find these, focus in on them and push for all your worth. I truly believe every person can attain PMA but only I repeat, but only if they really want to.
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