meniere's disease

Is it Illness or Who I am

Posted on by SomatiCat

My high school bestie, Suki, who is now a psychiatrist and professor of psychiatry, once told me about her young patient, who killed himself while she was away for a conference. She told me that he was doing much better in the last session. “It’s because he had already made up his mind,” I said. “He made peace. Once somebody made up his mind, nobody can stop it and I guess for that person the life was too painful and if so, I can’t find a way to tell the person to live.”

“But it’s his illness that made him kill himself,” Suki said. And I have been thinking about what she said for a long time. I am not suicidal per se, but have been thinking about killing myself since I was 8 years old. The thought has never left me. It’s just how I am. I have been on SSRI for almost 30 years on and off and after the last bout of major depression, I accepted that I needed to be on meds for life just to live normally.

I explained my friend that when I was in major depression, there were no line of demarcation between who I was and the illness, ie. depression. I am not in pain. I become pain. It’s not that I want to kill myself. I just want the pain disappear. I just want to have peace from who I am.

Fortunately, when I am in major depression, I can’t initiate any major action. I just passively exist with minimal action for survival. So I am not suicidal. I am now stable and am quite happy about my life. I can not be sure but It could get better as you age.

Then I got Meniere’s Disease. Meniere’s Disease is an illness. It is a condition I have. It is definitely not who I am. When I have an acute episode, I scream in my mind, “Kill me now!” I am in tremendous pain and suffering and I want to have it stopped. But I don’t wish to die because I know once I recover after 12 to 24 hrs, I will be my usual self.

On the other hand, I’m not sure if I could survive another bout of major depression. After being depressive for half a century, I sometimes feel tired. I wonder if the day would come when I feel too tired to keep on going. But it would not be because of Meniere’s disease. It would be because who I am.

To younger suffers of major depression, I want to tell you it could get better. I didn’t imagine I could have this peaceful life when I was younger and tormented. It could get better.

Hope could be Toxic

Posted on by SomatiCat

Hope is an imperative if you live in Ukraine now. Hope is an imperative for our democracy. Hope that it will get better is an imperative for that tormented kid in the school.

However, in some case hope could be toxic. Hope leads to expectations. Expectation could lead to disappointment and sense of loss, again and again. It is actually cruel to give somebody bedridden with ALS a hope to be able to walk again, at least at this point of time when no definitive cure is known.

My friend, Maria, had been losing her functionality every day. Every morning she woke up to find she couldn’t do what she had been able to do the day before. She knew she would not walk again, but sometimes she just desperately grasped a flicker of hope and dreamed that she could dance again. She wore her favorite pair of shoes when in a wheelchair for rare occasion to get outside for fresh air. I didn’t have any words to console her at that time. Any suggestions of hope that it would get better were cruel even when she felt a little better than the day before.

Then I was diagnosed with Meniere’s Disease. I’m grateful that it was not ALS, but Meniere’s is a bitch from hell. Because of sudden and unpredictable debilitating violent attacks, which render the afflicted totally incapacitated for hours sometimes days, Meniere’s suffers loose their functionality. Three years ago, I started have violent attacks. The life I expected to have was no more because I couldn’t do what I had been able to do. I sought for “cures” one after another. Every time I tried something, the violent attacks seemed to subside. And I had a hope. Then Boom. Another attack and I found myself lying on a bathroom floor violently vomiting. I had to cancel my plans and I was afraid to leave home. After a year of turmoil, I found a trigger, or so I thought, and I was in remission. I thought I was cured!

After two years, it came back. The moment it hit me, I knew I should change my mindset. No expectation, just live now. Regardless whatever happens tomorrow, I am living with this condition now and this is my state of being. It is the only reality. It doesn’t mean I don’t make any effort to control Meniere’s disease. I’ve been working much harder and am much more focused to change my life style which might have caused Meniere’s Disease. But I’m mindful not to expect anything. Expectation is about something in the future, which might or might not exist. I don’t want to be disappointed just because I lose what I might not have anyway.

I have been feeling much better this week with less frequent attacks and less severity, but I don’t expect I’ll be better tomorrow and will be able to travel in May. I don’t know how I will feel tomorrow. Yes, I am human and every morning upon waking up, I hope and hope my Meninere’s disease miraculously disappears. Then the tell-tale sign of tinnitus or vertigo comes back to tell me otherwise.

So don’t tell me it will get better. You don’t know and I don’t know. If you can’t tolerate witnessing my suffering, just hold your discomfort and say “I’m sorry. It must suck to have that condition.”

If I feel good, I enjoy the day. I live one day at a time. And basically it is how everyone should live. One day at a time.

Invisible Disability

Posted on by SomatiCat

I thought I was lazy, weak, and useless. When depression closed in, I felt worthless. Once I shut myself in for three months, only ventured out to walk my dog and it was so painful that I thought of jumping in the East River together with my beloved dog. It was my dog who grounded me. I was only worth to live for him.

I spend most of the day and the night in bed, streaming something on Netflix.  I watched the entire series of Buffy the Vampire Slayer twice and moved on to Angel, just to forget I existed.  I was worthless.  Every morning I hoped it would be different and every morning  I found myself drowning in molasses of dark, heavy liquid of depression.  I couldn’t get out of bed to take a shower.  Sometime I manage to go to grocery shopping and bought a combination of food which didn’t make sense.  I survived on a pint of ice-cream at a time.  I was worthless.  

I don’t know how but I managed to finish all the work assignments at hand on time. (I’m a freelance).  I even managed to attend dinners to entertain my clients.  Inside I was hurting as if I ingested shards of glass.  I came home to collapse for days.  

I was not lazy. 

Eventually I came out.  Nobody but close friends noticed that I had depression.  Since then I have been on standard doze of SSRI even when I feel like a million because I accept it is how I am.  And my friends call me a powerhouse.  I am not useless. 

Then I got Ménière’s disease.  I joined a support group and found out that most of the sufferers got depressed with anxiety.  Ménière’s disease robs you of the life as you knew.  I didn’t get depressed.  I decided to fight to manage it.  I am not weak.

When in remission, I am still a powerhouse.  However, when I have flare ups, my life is just like I was depressed.  I can’t go out.  I spend most of the day and the night in bed.  I don’t function.  A small chore exhausts me.  Dizziness caused by inner ear disorder renders me confused.  But I don’t blame myself.  It’s the illness not me.  

One day I woke up and I didn’t have dizziness, but couldn’t feel like getting out of bed.  I wasn’t sure if I was depressed or it was because Ménière’s disease.  I had a bad attack that night so it must have been Ménière’s disease.

People with this disease are real warriors.  They are not weak.  They are not lazy.  They are fighting and enduring for every breath.  They are mothers and fathers.   If you are weak, you won’t survive with Ménière’s disease.

Ménière’s disease is (probably) mechanical disorder.  Depression is chemical.  Both are invisible.  But we are fighting all the time.  So please be compassionate if you are lucky enough not to suffer these afflictions.  And please be more compassionate to yourself if you are a sufferer.

P.S. Ultra low salt diet is required to manage Ménière’s disease.  I love potato chips but can’t take a risk of having an attack.  

A woman sat next to me on a subway and started to eat potato chips.  I understood how the vampires in the Twilight Saga felt when they sat next to humans.  

Unless you experience it, you will never really feel it.  So please don't judge people for what you've never experienced.

I feel I want to die when I have a bad episode.  But I know it will pass.