@Elliott.S,
@Autumnly -- I just wanted to mention that I think both of you have some important things to say, and appreciate your contributions. I also want to mention that even though it appears both of you at times misinterpret what the other is saying, I appreciate that there continues to be a polite civility as you continue your discussion.
Also, there are many people that are mostly homebound due to severe tinnitus and pain-hyperacusis. That's why Jenny and Gaby opted for euthanasia,
Having been a frequent visitor on ME/CFS forums for many years, I can say that a large percentage of people with this disease are also homebound, and suffering from severe pain. Many are so debilitated, they are bedbound, some not even being able to get up to go to the bathroom. They are also so sensitive to light and sound, that they spend their time in bed with blinds over their eyes, and ear plugs in their ears, sometimes for years on end.
Some who are somewhat less debilitated post on some of those ME/CFS forums. It constantly amazes me how so many people going through such intense difficulties manage to find the strength to keep struggling each day. But they do, and they often do it with a remarkable degree of resiliency, and even humor. Most are very brain-fogged, but they still continue to search for any kind of solutions that might offer a degree of hope or improvement.
Many of these people also have tinnitus and hyperacusis (both ME/CFS and tinnitus have major brain components, and so there's a number of overlapping symptoms). Most have other crippling symptoms such as vertigo, dysautonomia, severe digestive disorders, etc. And yet, they soldier on. Just as with tinnitus, some commit suicide. But again, just as with tinnitus, most don't, and continually do their best to improve their quality of life.
I was thinking of these people when I tried to point out to
@PeteJ that he actually has a LOT going for him as he faces his own struggles. He apparently CAN get out of bed. He apparently CAN use his eyesight in whatever way he wants. He CAN walk, he CAN likely drive or use public transportation, he can do so many things that he seems to take for granted. But as Elliot pointed out, he doesn't seem to appreciate some of the support, ideas and perspectives that are being shared. I have to admit, it kind of does lead to a bit of compassion fatigue.
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I'm not sure exactly where I'm going with this, except to say that I have a great appreciation for both sides of the discussion here. I might just mention that I agree with most of Elliot's points about making the effort to fully appreciate the things in life that are still there for us to enjoy. Having ME/CFS myself, I was once so debilitated, it would take me an hour upon waking to sum up the courage to start crawling toward the bathroom. On occasion, half way there, I would have to lay on the floor to rest for up to an hour, before trying to complete the "journey".
This is not an exaggeration, yet during some of these most difficult times, I discovered that virtually every day, I was able to find at least a "moment" of humor, or appreciation for life in some manner, whether being in nature, being around pets and other animals, seeing love/kindness in action, etc. In short, I did everything I could do keep a twinkle in my eye, and a spring in my step, even though so many times I "emotionally" wanted to throw in the towel. But it wasn't how I felt spiritually.
Over the years, my health improved, and my limitations lessened, mostly by doing so called "alternative therapies" and cultivating and keeping a sense of equanimity. These days, I'm only bedbound about 20 hours per day. But I CAN walk as much as 1-2 miles/day. Each one of those walks gives me the greatest joy, as there were long periods of time where I absolutely couldn't do that. And when I'm able to walk, I can forget about my tinnitus and hyperacusis for a while. And I feel free. In the beginning it was only for a minute or so at a time. But I can now experience that sense of freedom for my entire walks, and for a number of other activities, which now total hours per day.
I've been able to do this because I've made major lifestyle changes that are conducive to my own health circumstances. I feel like I explored a thousand or more different things that might improve my health, and came up with a couple dozen or so that seem to have a notable impact and given me my greater functionality. I feel it will be the same way with my tinnitus. I'm 18 months in, and I continue to discover things that create seemingly minor or modest shifts. As I continue to do them long-term, I suspect the benefits will accumulate, and I will continue to experience progress.
I might just take this opportunity to mention that I continue to do mHBOT on a daily basis. Though it hasn't significantly reduced my tinnitus, it does seem to have improved my neurological resiliency so that the tinnitus feels as much as 50%+ less intense. I was just noticing yesterday that when I go into the chamber, I almost go into a "temporary" habituation, where the pain of the tinnitus is reduced by as much as 90%. I've only been doing this for about 6+ months, and feel I can realistically expect further improvements in the future.
When I think about Jenny and Gaby opting for euthanasia, I do wonder if they tried daily mHBOT for a few months to a year. Or perhaps did regular self-acupuncture, or did any number of other unorthodox things that most people never consider. I feel there are literally an unlimited number of things that can be tried, but that all it maybe takes is to find a dozen or so things that improve things marginally (say intermittent fasting). And if you can find those things that work marginally, and add them all up, it can potentially lead to notable improvements, and greater quality of life.
That may not be the case for everybody, but I think people owe it to themselves to pursue some kind of experimental course with natural, low-risk therapies before resorting to suicide. If somebody
has tried for years to live with their tinnitus (or other health struggles), and haven't been able to make any progress (or even deteriorated) despite all their best efforts to improve things for themselves, that's another story.
But in a case such as Pete's,
he's only had tinnitus since February, 2019! I'm not normally one to recommend what people do, but I think he owes it to himself to give it this whole thing a lot more time. From what he's written, it's seemed I was in far worse shape at a similar juncture than what he is. Even though I did have lots of thoughts of suicide at that time, I promised myself I'd give this whole episode at least 2 years before resorting to such a decision.
Now 18 months in, suicide doesn't even enter into my thoughts. Even though I struggle with this tinnitus stuff several hours each day, it's much less of a struggle than in the beginning. More importantly--and what I try to focus on--is that I also have several hours a day where I can and do greatly enjoy my life. I'll just mention again, Pete's got a lot going for him. I think he can transition out of his time of crisis and get past his thoughts of extreme desperation, if only he believed it was possible. I've gotten the impression however, that he may no longer want to hear messages of encouragement.
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