From Active Sufferance to Passive Sufferance

only way I have found to survive, which for some obscure reason, I still choose to do.

One thing this has taught me is that the human survival instinct is huge. While there is still a shred of love left in us for this life we will cling to it even through the harshest of nightmares.

But every person has a limit. A point where it's just all too much and there's nothing left to cling to.

Fortunately I don't think you will ever reach this point @Jazzer as you bounced back from your awful start and built your life on strong foundations my friend.xx
 
@Bam - I don't think we are ever truly out of the danger zone with this thing.
Right from the onset, I picked up my beautiful little Annie, looked into her sweet little face, and promised her I would always be here to look after her - even though I had no absolutely confidence that I even could be.

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As I approached it with meditation, it became more passive. I took some of my life back. I became operational once again, calmer, functioning,,, my survival instinct is intact.

Hey @Jazzer

I always appreciate your philosophical musings (if I may call them that). I also appreciate your openess and interest in others' philosophical perspectives. Thought I'd mention a little tidbit on how I view some things about the "human condition" as it relates to your above comment.

We're all very complex human beings, living our life through our physical bodes, in addition to our emotional, mental, subconscious, psychological, and dream states (and perhaps a few others). I've come to believe that when we start meditating, or doing some other discipline to get greater control in our lives, we actually very subtly begin to start tuning into ourselves more and more as Soul.

Some indications that this is happening is our ability to calm ourselves to a greater degree, become a little more detached from things that might otherwise overwhelm us, start experiencing greater degress of love and gratitude in our lives, etc. Often we make these changes without even being particularly aware of them at first, but those around us will often notice it before we do. Anyway, your experiences seem to validate my own perspectives on some of the deeper things that can happen once we start to mediate, or do something similar like Qi Gong, etc.

But every person has a limit. A point where it's just all too much and there's nothing left to cling to.

Hey @Bam,

I know that feeling all too well, so I can empathize greatly with how you feel. I thought I had reached a fairly comfortable place of equinimity after doing my own version of mediation for many years (I call it a contemplative exercise), despite having to deal with some pretty difficult and intractable health issues over a long period of time. However, I was totally unprepared for my initial onset of tinnitus/severe hyperacusis, precipitated by a drug that was given to me in the ER.

It was given to me as an anti-nausea medication, but wasn't told that it was initially formulated as an antipsychotic drug, AND, had the potential to induce psychotic episodes. I don't know if that's what happened to me, but what I experienced was something at least resembling it. I awoke the following morning with not only screeching, unbearable tinnitus, but had thoughts/images/emotions, etc, racing through my system at about 20-30x the normal pace.

My body was flush red, and remained so for many days. My balance was greatly affected, I had horrible twitching muscles and other muscle pain and spasms. My eyes and eyesight went haywire for a few days, could hardly eat, couldn't sleep for more than 5 minutes at a time, and when I did, woke up to my tinnitus being about 3x louder. Unbelievably, there was much more, including intense feelings of ADD, ADHD, extreme anxiety, depression, etc.

I didn't think I'd make it! Despite my years of having done so many things to maintain my equilibrium, I was spinning like a top out of control, and all I wanted to do was die. I thought about it constantly, and almost prayed for it to happen. I even thought there was about a 25% probability I wasn't going to make it, because of the ongoing intermittent and unpredictable seizures I was going through those first few weeks.

After getting only about 30 minutes of sleep a night during those early excruciating days, I began to very slowly start to do things that helped me sleep, help me cope, etc. But the constant thoughts and feelings of desperately and frantically needing to escape from this horror was all consuming for those first few weeks, only "beginning" to subside in the following months. I don't believe it was any kind of process of habituating, as I don't know whether that's likely to happen for me. I think it's more that my brain and neurological system are ever so slowly beginning to heal.

Besdies the shock from what I considered to be the most difficult (and ongoing) experiences of my life, it has also been one of the most humbling experiences of my life. It made me question everything I'd believed in and done for myself spiritually in the years leading up to it. If I'd been as successful as I thought I was at reaching my own sense of equanimity, then why did I so desperately want to die? And why couldn't I even hardly imagine anything in the future beyond making it through the next moment, not to mention the next day, or next week, etc?

I alternated between going back to some of my "spiritual basics", or discarding them altogether. I leaned toward the latter, as I could not do a mediation, or contemplation anyway. Trying to sit or lie still and calm myself made me almost go beserk. After a while however, I felt I had to find SOME way to restore a sense of equilibrium. I began by trying to do "walking" mediations, in part to avoid that going beserk feeling. I could only do it for 10-20 seconds at a time however.

But I kept at it, eventually extending it out to a minute (wow), and then longer. Once I started being able to sleep, things began to improve more quickly. After a while, I was able to go back to my sitting contemplations, even though it felt like torture to do so. The screeching was SO LOUD, and it was a constant battle to literally NOT SCREAM from the torment as I tried to calm myself. Eventually however (and I don't know how exactly), but I did. I could even get to the point where after about 15 minutes, the tinnitus began to feel less threatening and intrusive. -- But this is no "success" story. I'm doing better at "coping", but I don't feel anywhere close to getting beyond "enduring".

Bam, I had no idea I would be writing out so much in the post. I thought it would just be a short note to Jazzer, until I saw your above comment. Just wanted you to know that I absolutely hear you! I haven't read some of your earlier accounts of your experiences in a while, but I do recall there were some similarities between yours and my overall experiences (I won't even get into my fear of being institutionalized if I were to try to get help through our health care system).

Perhaps to end on a slightly more upbeat note: -- I'm coping better these days (most of the time). It's now rare that I don't find at least some moment or short period of time in a day where I can actually experience humor, joy, love, gratitude, and other positive things in life. One of the things I've learned from my experiece is to fully appreciate those moments and savor them with every ounce of my beingness. Because I never know how long it will be until they arrive again. But as time goes by, I'm becoming more and more confident they will arrive again, and they're doing so with greater regularity.

Something else I've learned (about myself). I'm more resilient (and indomitable) that I would have ever imagined. I don't know that I would have learned that any other way. And it gives me hope that I can build on that, and become a little more creative and patient in my every day life. I believe it's the only way I'm ever going to get to the point of feeling my life is worth living again, much less thriving as I'd really like to do.

Until then, frustration and discouragement abound. I all too often feel like I'm barefuly enduring life rather than living it fully. But I've been around this world long enough to recognize that to a large degree, human beings are "problem solving machines" ("ego defending mechanisms" as well, but no need to get into that now! lol). Nobody escapes life without having to resolve some kind of difficult situation(s) they're confronted with. Just so happens, those on this board are dealing with a problem(s) that is not only particularly vexing and painful, but sort of creepy as well.

Dave, Bam, -- All the best to both you. I appreciate your ongoing dialogue (and friendship) with each other. Thought I'd chime in today for a moment. Had no idea it was going to be such a long chime however. :) -- Take care!

@Bill Bauer, I think you once mentioned Bam's story was one of the most incredulous you'd ever read. Since my story has some similarities to Bam's, I thought I'd tag you hear in case you had an interest. -- Best....
 
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Goodness me @Lane
a lengthy post, but it kept my interest and I obviously learnt much more about you than I knew before.
You have really 'been through the mill' my friend, but you sound like you have emerged with great philosophical composure.
Quite amazing.

You are right of course - philosophical musings do interest me greatly.
Conceptualising my problems has saved me at specific crisis points in my life.
If you can get your head round it you are usually in with a fighting chance I find.
Hope to talk again Lane.

Very best wishes,
Dave x
Jazzer
 
you sound like you have emerged with great philosophical composure.
Thank you for your kind words... :)
I am only too aware that 'coping' is all that I have.
The term 'Management' is a bit ambitious, as it is suggestive of action, but what action is possible?
This reply is mostly to your question, "what action is possible?" Not sure if it's a philosophical reply, or a practical one, or perhaps a little bit of both. -- I made a post on another forum a while back, in which I quoted from a remarkable book I'd been reading. Perhaps it's something you may find interesting as well.

After reading that book, I decided to spend more time in nature, as it seems to have healing qualities we humans should probably know more about and experience. And it really seems to help me. -- Here's the copy and paste of my original post...
.................................................................

Here's another "jewel" from one of Alain Loriquer's books, this one entitled, "The Third Branch of The Tree of LIfe". In all his books, Alain refers to himself as "the Caraka" which is akin to a spiritual student. The story below is a conversation between the Caraka and the Master of the Tree of Life. It includes a "technique" all of us have at our disposal if we choose to use it--which I intend to do to help me cope with ME/CFS. -- It begins with the Master of the Tree of Life speaking to the Caraka...
-------
The Light and Sound that the trees of your solar system receive was augmented recently. Very few humans know this. It means that they are managing larger amounts of God's love and are capable of helping humanity, if you Earthlings would only take the time to get to know them."

While considering this interesting information, the Caraka recalled a recent experience he had had with a giant tree. Certain his new mentor would enjoy his story he began, "A few months ago I was being bombarded by a lot of negative energy. This created a lot of personal stress and I realized I needed to find a more effective way to relax. With this in mind, I began taking short walks in the forest behind my home.

One day, when I was in really bad shape, I walked up to the largest tree in the forest and pleaded, "Can you please help me? You're much bigger than me and I have a feeling you can absorb the negative energy that surrounds me. If this is true, would you consider helping me out?"

The tree was very surprised with my request, but it immediately consented, "Of course I'll help you. Just wrap your arms around my trunk and let me do the rest." That's what I did. I wrapped my arms around this giant tree and somehow its special love pulled all of the negative energy off of me."

Pleased to hear of the Caraka's experience, the Master continued. "I'm delighted that you were wise enough to ask that being for its help. I wish more humans would do the same. Perhaps they will in the future.
 
Thank you for your kind words... :)

This reply is mostly to your question, "what action is possible?" Not sure if it's a philosophical reply, or a practical one, or perhaps a little bit of both. -- I made a post on another forum a while back, in which I quoted from a remarkable book I'd been reading. Perhaps it's something you may find interesting as well.

After reading that book, I decided to spend more time in nature, as it seems to have healing qualities we humans should probably know more about and experience. And it really seems to help me. -- Here's the copy and paste of my original post...
.................................................................

Here's another "jewel" from one of Alain Loriquer's books, this one entitled, "The Third Branch of The Tree of LIfe". In all his books, Alain refers to himself as "the Caraka" which is akin to a spiritual student. The story below is a conversation between the Caraka and the Master of the Tree of Life. It includes a "technique" all of us have at our disposal if we choose to use it--which I intend to do to help me cope with ME/CFS. -- It begins with the Master of the Tree of Life speaking to the Caraka...
-------
The Light and Sound that the trees of your solar system receive was augmented recently. Very few humans know this. It means that they are managing larger amounts of God's love and are capable of helping humanity, if you Earthlings would only take the time to get to know them."

While considering this interesting information, the Caraka recalled a recent experience he had had with a giant tree. Certain his new mentor would enjoy his story he began, "A few months ago I was being bombarded by a lot of negative energy. This created a lot of personal stress and I realized I needed to find a more effective way to relax. With this in mind, I began taking short walks in the forest behind my home.

One day, when I was in really bad shape, I walked up to the largest tree in the forest and pleaded, "Can you please help me? You're much bigger than me and I have a feeling you can absorb the negative energy that surrounds me. If this is true, would you consider helping me out?"

The tree was very surprised with my request, but it immediately consented, "Of course I'll help you. Just wrap your arms around my trunk and let me do the rest." That's what I did. I wrapped my arms around this giant tree and somehow its special love pulled all of the negative energy off of me."

Pleased to hear of the Caraka's experience, the Master continued. "I'm delighted that you were wise enough to ask that being for its help. I wish more humans would do the same. Perhaps they will in the future.

Have to admit that I've never tried hugging a tree Lane.
(I would need to make absolutely sure that nobody was watching !!!)

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To give you a perspective - I do not have a faith.
My lovely misus is a firm 'believer' and says that I am 'too black and white.'

"TOO BLACK AND WHITE?
HOW COME I'VE GOT THREE GREY PUSSYCATS ?"
(She isn't amused when I say that.)

About the only thing I have come to believe in, is the goodness of kind people.
I am not at all sure I believe in anything else really.

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Have to admit that I've never tried hugging a tree Lane.
(I would need to make absolutely sure that nobody was watching !!!)

View attachment 23972


To give you a perspective - I do not have a faith.
My lovely misus is a firm 'believer' and says that I am 'too black and white.'

"TOO BLACK AND WHITE?
HOW COME I'VE GOT THREE GREY PUSSYCATS ?"
(She isn't amused when I say that.)

About the only thing I have come to believe in, is the goodness of kind people.
I am not at all sure I believe in anything else really.

View attachment 23973
@Jazzer you have a lovely sense of humor
 
I had an abscess tooth over forty years ago that was very painful. It happened on a Saturday night so I went to an ER. They said we can pull the tooth or you can wait until Monday and see if your dentist can do a root canal. I decided to wait until Monday.

The pain that I have now from cut mouth nerves is 10 times worse than that abscess tooth. My mouth is physically on fire. I can't move facial muscles and it takes me 40 minutes to brush my teeth. The cut nerves in my mouth will never recover. With very severe whiplash conditions and a severe damaged spine I can hardly move. I have very severe somatic high pitch tinnitus. I also have a serious heart condition along with very painful lower vein disease.

I need to start suffering from the inside because I don't know how much more emotional pain I can place onto my caring wife. She cries in her sleep or moans no no. If it wasn't for her I would need to be in a nursing home.

I can't take a shower. My wife helps me with a bath. She washes my hair, face and body. She dresses me and does everything around the house. She's up everyday at 5.00 am and goes to work at 7.00 am. She has a leadership position within a school district where she spends part of her time helping parents and their children who have tinnitus.
 
I had an abscess tooth over forty years ago that was very painful. It happened on a Saturday night so I went to an ER. They said we can pull the tooth or you can wait until Monday and see if your dentist can do a root canal. I decided to wait until Monday.

The pain that I have now from cut mouth nerves is 10 times worse than that abscess tooth. My mouth is physically on fire. I can't move facial muscles and it takes me 40 minutes to brush my teeth. The cut nerves in my mouth will never recover. With very severe whiplash conditions and a severe damaged spine I can hardly move. I have very severe somatic high pitch tinnitus. I also have a serious heart condition along with very painful lower vein disease.

I need to start suffering from the inside because I don't know how much more emotional pain I can place onto my caring wife. She cries in her sleep or moans no no. If it wasn't for her I would need to be in a nursing home.

I can't take a shower. My wife helps me with a bath. She washes my hair, face and body. She dresses me and does everything around the house. She's up everyday at 5.00 am and goes to work at 7.00 am. She has a leadership position within a school district where she spends part of her time helping parents and their children who have tinnitus.
My heart goes out to you Greg. You have provided so much information for this community and I hope you find relief eventually <3
 
I had an abscess tooth over forty years ago that was very painful. It happened on a Saturday night so I went to an ER. They said we can pull the tooth or you can wait until Monday and see if your dentist can do a root canal. I decided to wait until Monday.

The pain that I have now from cut mouth nerves is 10 times worse than that abscess tooth. My mouth is physically on fire. I can't move facial muscles and it takes me 40 minutes to brush my teeth. The cut nerves in my mouth will never recover. With very severe whiplash conditions and a severe damaged spine I can hardly move. I have very severe somatic high pitch tinnitus. I also have a serious heart condition along with very painful lower vein disease.

I need to start suffering from the inside because I don't know how much more emotional pain I can place onto my caring wife. She cries in her sleep or moans no no. If it wasn't for her I would need to be in a nursing home.

I can't take a shower. My wife helps me with a bath. She washes my hair, face and body. She dresses me and does everything around the house. She's up everyday at 5.00 am and goes to work at 7.00 am. She has a leadership position within a school district where she spends part of her time helping parents and their children who have tinnitus.

My god Greg.
You are forced to live this way,
and I can hardly even bear to read your words.
Life is so hateful.

And yet you still manage to research our problems, help and advise the rest of us.
I know that some on here truly suffer - there is no question - but yours is off the scale.
You are a true gem Greg,
an absolute blessing to the rest of us.
If only we could do something to help you?

Give my love to Melinda Greg.
She is clearly an angel.
I recognise it - I have one just like her at home.

Love you man

Dave x
 
I had an abscess tooth over forty years ago that was very painful. It happened on a Saturday night so I went to an ER. They said we can pull the tooth or you can wait until Monday and see if your dentist can do a root canal. I decided to wait until Monday.

The pain that I have now from cut mouth nerves is 10 times worse than that abscess tooth. My mouth is physically on fire. I can't move facial muscles and it takes me 40 minutes to brush my teeth. The cut nerves in my mouth will never recover. With very severe whiplash conditions and a severe damaged spine I can hardly move. I have very severe somatic high pitch tinnitus. I also have a serious heart condition along with very painful lower vein disease.

I need to start suffering from the inside because I don't know how much more emotional pain I can place onto my caring wife. She cries in her sleep or moans no no. If it wasn't for her I would need to be in a nursing home.

I can't take a shower. My wife helps me with a bath. She washes my hair, face and body. She dresses me and does everything around the house. She's up everyday at 5.00 am and goes to work at 7.00 am. She has a leadership position within a school district where she spends part of her time helping parents and their children who have tinnitus.

That's absolutely awful. My heart goes out to you.
 
I had an abscess tooth over forty years ago that was very painful. It happened on a Saturday night so I went to an ER. They said we can pull the tooth or you can wait until Monday and see if your dentist can do a root canal. I decided to wait until Monday.

The pain that I have now from cut mouth nerves is 10 times worse than that abscess tooth. My mouth is physically on fire. I can't move facial muscles and it takes me 40 minutes to brush my teeth. The cut nerves in my mouth will never recover. With very severe whiplash conditions and a severe damaged spine I can hardly move. I have very severe somatic high pitch tinnitus. I also have a serious heart condition along with very painful lower vein disease.

I need to start suffering from the inside because I don't know how much more emotional pain I can place onto my caring wife. She cries in her sleep or moans no no. If it wasn't for her I would need to be in a nursing home.

I can't take a shower. My wife helps me with a bath. She washes my hair, face and body. She dresses me and does everything around the house. She's up everyday at 5.00 am and goes to work at 7.00 am. She has a leadership position within a school district where she spends part of her time helping parents and their children who have tinnitus.

Greg i can only imagine the hell you are in. It seems so so wrong. Thinking of your pain makes me cry, for you, for me, for all of us suffering. Thank God you have your wife and she is so incredibly caring.

I have nothing but my dog, but I'm not in pain anymore. I'm physically fit...for now. But how much mental stress and torment can a human endure before we physically crumble and end up in even more torment and pain?

Im so sorry my friend. You seem such a kind gentle man. Life can be so bitterly cruel. Big hugs.
 
appreciate your ongoing dialogue (and friendship) with each other. Thought I'd chime in today for a moment. Had no idea it was going to be such a long chime however. :) -- Take care!

Lane your kind spiritual nature shines through in all your posts. You are another person who really doesn't deserve this nightmare foisted on them. As you know I, like you, have zero faith in habituation for T at this piercing level, but I am a strong soul and although my resources are dwindling and my body and mind are exhausted I go on, like you, day after day, trying to see a way forward and desperately hoping the path clears somewhat.
 
I had an abscess tooth over forty years ago that was very painful. It happened on a Saturday night so I went to an ER. They said we can pull the tooth or you can wait until Monday and see if your dentist can do a root canal. I decided to wait until Monday.

The pain that I have now from cut mouth nerves is 10 times worse than that abscess tooth. My mouth is physically on fire. I can't move facial muscles and it takes me 40 minutes to brush my teeth. The cut nerves in my mouth will never recover. With very severe whiplash conditions and a severe damaged spine I can hardly move. I have very severe somatic high pitch tinnitus. I also have a serious heart condition along with very painful lower vein disease.

I need to start suffering from the inside because I don't know how much more emotional pain I can place onto my caring wife. She cries in her sleep or moans no no. If it wasn't for her I would need to be in a nursing home.

I can't take a shower. My wife helps me with a bath. She washes my hair, face and body. She dresses me and does everything around the house. She's up everyday at 5.00 am and goes to work at 7.00 am. She has a leadership position within a school district where she spends part of her time helping parents and their children who have tinnitus.

@Greg Sacramento I care about you. And my dental experience while not as bad as you experienced left me with a damaged lower jaw bone and nerve damage. And severe tinnitus in 2002.

I try to just listen to everyone's pain and suffering knowing that tinnitus wise it is something no one can tell anyone. It sucks but I am alive.

But back in those first few years...very much like @Bam and others. And I could not listen to those who would say oh you will get better or okay or whatever. It was not comforting at that time because I could not accept or believe it.
 

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