::::::::::::::::::::::::::::::::::::::::::::::::

This is a post I wanted to write a long, long time ago, when I first got PN, but I was too distraught to do so. It's been over a year now since I first got diagnosed with PN from Cipro toxicity and now, I feel I can at least express some things I know must have been plaguing others here.

1: Why me?

This question is haunting and depressing. It will never really go away. I often spend too much time on the "what if" - what if I had gone to another doctor? What if I never took those pills?

But this type of thinking is fruitless, as it cannot help me, only hurt me by causing depression. I feel we need to keep our minds off this question and type-of-thinking in order to move forward in our lives.

2: Am I being punished? Do I deserve this?

I often wonder what I did so wrong to deserve this affliction. In reality, there are thousands of things I did wrong that could attribute to me being punished with this ailment. But I think God is a loving being, and in fact, I thank God for making me feel so much better, rather than feeling like I am damned - though I certainly feel like that at flare-up times.

I also realize that this life we live in has very little to do with what a person deserves. First off, who judges what people deserve anyway?

I think both life's success and failures has to do with free will and choice. These 2 factors given to us by God or nature (if you're an atheist) pretty much dictate the kind of life we live.

Even so, much of our lives are NOT in our control, so we have to choose from a myriad of situations thrown at us. You can view these as types of tests in some sense. --Tests with no real right or wrong answers...just personal answers, epiphanies, and outcomes.

3: How could I move on? Is there hope?

Well, the answer to this is simply yes. There is hope, lots of hope. Us sufferers of chronic pain live for the "In-between" times; those slivers of pain-free hours we cherish so very much.

Make no mistake about it. At times, I am suicidal, but oddly NOT depressed very much. Most of the suicidal thinking stems from the notion that I might never heal - or more so, that I might never reach a point where I can live a happy life.

In reality, though, I suffer with minor pn pains everyday, I tolerate most of it very well, for most of the time. However, during flareups, it is a very dangerous time for someone like me (already mentally unstable) as suicide is always in my mind during those times.

In fact, I could pretty much say, that if my PN does not reach a certain healing point, or if it gets worse, my death would probably come from suicide. People like me don't plan such things, rather they are desperate compulsions made to evade pain. Sad, but true.

But this does not deter me in having happy times and moving on in life. In fact, I thank God -I am nearly at the point where Neuropathy no longer hinders my happiness, yet, I'm not quite there yet.

Sure, there is always the possibility I could get worse, or something horrible may happen in the future to make things worse, but we can not think like that. We can't worry about bad things that may never come to be.

4: What's the best way to cope with it...really.

Recently, I changed my outlook on life. I realized there is no future - no future that is set. Our futures are made, partially by our present choices, and those uncontrollable circumstances that are out of our control.

I think of life on a literally "Day-By-Day" basis, I even have a day-to-day journal. This is a positive thing.

To me; life is like entering an endless realm of rooms. Each day is a room, and we enter one room every day that passes. Yet we do not know what is going to be in the next room, even as we pass through them.

Apparently, at some point, we will all enter our last room, but we don't know what will be in it or when the doors to them ends.

5: Reflections:

I am so ashamed of all the trivial things I worried about in the past. I now realize I could have lived a much better life, had I not stressed over arguments and worried over stuff I can't control, or simply gave in to anxiety. What a waste of time and life for me. I am so ashamed of this when I look back at my life.

Perhaps this is the ultimate lesson I'm being taught. When I was young, I worried about death all to much. At some point, I was nearly an atheist, but then, I realized that the universe and all things in it are simply far too wonderful and amazing to have come out of nothingness - I then began to believe that in order NOT to believe in God or life after death, I would have to believe in Nothingness.

I do NOT believe in nothingness. There are just things we do not yet understand. But now that I'm no longer scared of death, I find myself afraid of life - of living a life that might be plagued by pain until I die.

I deal with this by living each day separately from one another. My goal is to live in the present, while trying to do things that would be left in my wake - a way to contribute to life and the world we live in, even after I'm gone. I do this mainly through art, writing, and mediation with people.

Also we get relief in our dreams - we dream for half of our lives -we actually live in another dimension of sleep for half our lives -you'd be wise to appreciate this.

The way I see it now, all I have to do is survive the day. Then we rest, sleep and dream, and then face another day, which might very well be a good-day indeed. After all, as time passes, you will get better that much is sure.

:::::::::::::::::::::::::::::::::::::::::

So much of what you said was true. Being spiritual does help, each and every day. You have a wonderful way of expressing yourself. None of us wants to be sick and hurt. I have to believe too, in our maker. He made us out of star dust, and that is pretty special. Just to be alive is a gift. You are showing us all how to survive our pain better. Thank you for that post. ginnie

I would like to discuss the quality of life part of your post, Jesse. I am a practicing, traditional Catholic, and while I intellectually know that all life is sacred and a gift from God, and that He does not take returns lightly, I have spent most of my life trying to make everyone happy in an effort to justify my existence.

Now, due to progressing hereditary neuropathy I am no longer particularly productive. I can go to physical therapy or food shop, not both, do a few loads of wash but not carry the baskets or reach into the back of the dryer, and cook one meal per day, on a good day. I rarely bake although that was one of my major skills, as was all manner of fine needlework. Driving is limited to 20 minutes or less. That is about it. I was raised to cater to my mother, and I relate to everyone the same way, including my husband and children. I feel worthless. I was an accomplished scholar and can still read and concentrate, but it does not seem like enough justification for living, taking up space and while my medications are relatively cheap I have to see the doctor every month which adds to the cost.

No one makes me feel like this, they, are all reassuring, but I am having trouble thinking about this. How do you define quality of life?

I hear you. Sometimes I feel the same way. Just what am I still here for? I have 5 auto immunine diseases, and I am a burden to my son. Both physically, and emotionally. I try to keep burried in books as a distraction. I come here for mutual support. Try to keep my head on straight. Quality of life is different for everyone. I sure can't define it. I still can sit on my butt and garden. I still can create mosaics to a degree. I am limited with time on both endeavors. I do pray alot. I suppose if there is still some enjoyment in life, with some activity that a person enjoys, thats good. Try to see some moment of good in each and every day. I try desperately not to worry about the future, think I would go nuts if I did that. Let me know what you think quality of life is, how do you define it? ginnie

Suzanne -- NOTHING can take that away from you! ]

---------------------

In what context?

Whatever the context, whatever each individual's definition/understanding, "quality of life" is abstract and subjective. Like art or pornography or right & wrong, we may not be able to "define" it, yet we all have an innate understanding of what it is; we know it when we perceive it. /

In order to reach (a better?) understanding, much has been written/discussed (and makes for, IMO, some interesting reading. )

definition quality of life

Quality of Life -- Wikipedia

medical definition quality of life

Quality of Life (Healthcare) -- Wikipedia

Doc

That was a wonderful post.
I am a non believer .. and you might think that because I don't believe in a heaven or afterlife, that things seem more bleak-but quite the contrary. I don't believe my life is somebody else's making. If it is, then that creator is cruel and sadistic. Anyhow, when you have the mindset that you only get one shot at life, you're only here for a limited amount of time..everything becomes that much more appreciated and beautiful. Besides, the thought of everlasting life is TERRIFYING. Sorry, but I want to disappear eventually

Anyway, great read. Thanks for the post-everyone try to enjoy what abilities they have , and remember that there is always someone worse off. We are lucky to live where we do. Especially me-being a Canadian with free health care! I am grateful . There are also no natural disasters that ever occur where I am. We take a lot for granted. There is medication for pain and depression-but the best ones are laughter, and love

I think, Susanne, that your participation HERE is a generous act, and a result of your painful situation. If you had not visited here because of your CMT, you would not be sharing your feelings and experiences, which impact other PNers considerably on a daily basis. Your writing style and intelligence tempered with courage, are inspiring to others here. So I for one think you are FAR from useless in this life, in spite of your challenges today.

There are many generous posters here to help in any way, shape or form, those who come here in pain and fear. I quietly thank DocJohn everyday for this generous venue as well, making it all possible for us to share with each other.

There are so many people on all of the forums here who remain on a daily basis to help others any way they can. So I will send out a THANKS to them all on this thread. I read most of the posts on all the forums here, as it is part of my volunteer job as a moderator. I think NeuroTalk is very unique on the web. Each and every day I see people helping people in remarkable ways!

Thank you Ginnie, Dr. Smith, and Mrs. D. for your encouragement. My difficulty with defining quality of life is compounded by my childhood. I was unwanted, an embarrassment, raised with an overwhelming sense of shame, the root cause of which I did not understand until much later by which time I had completely internalized it. My mother had been unfaithful to her husband for many years, and I was the product of her adultery. By my teen years I was more than ten inches taller than my father, making it very obvious, though I doubt that anyone in town except me was ignorant of what was going on. I was, from the beginning, a mistake, an idea so firmly rooted in my consciousness that my husband in 33 years of devotion has not been able to convince me otherwise. The irony is that I inherited this CMT as well as the autism spectrum issues from my biological father who never acknowledged me as his daughter, leaving a very large estate to his real family.

I have a tendency to logical, linear, literal, and rigid thinking, which does not help when trying to define quality of life. My first criteria would be what I can do for other people, now distinctly limited, at least in an active sense. A good listener I am still the sounding board for my husband and children, sometimes a few friends, and my husband is frantic to secure my company if nothing else, he still finds my companionship as indispensable as when we were 18.

My second criteria would be my ability to create. I always assumed that when the children were grown I would have time for enormous projects, lace, quilts, etc. but I find that my arms have started to deteriorate much more quickly than I was prepared for, and I accomplished far more when I had three babies under four than I do now. This disease has entirely changed what I anticipated these years to be like. I expected to be in a wheelchair. I did not expect my hands to go numb after a few minutes. Needlework has been my obsession since I was four or five, my sole companion in childhood. Since it now takes up a much smaller part of my time and thoughts, I feel a distinct sense of loss, not just of my abilities, but of the enjoyment of it, the pride of craftsmanship. Uncomfortable with myself I could be justified by my accomplishments.

My husband and I met as freshmen in an honors program when we were 17. He has always known that I find life psychologically painful, being on the autism spectrum, always socially at sea. We created a life in which I was indispensable, homeschooling five children, so I couldn't check out, exploiting my strong sense of justice and responsibility. Now that I need more help than I can provide, or will soon, what becomes the anchor?

We are experimenting with this, traveling more while I can, trying to build at least one or two enjoyable activities into each day. Going to restaurants is fun, but can really pack on the pounds, which I have to guard against as weakened muscles cannot support extra weight.

I know that I am fortunate to have a devoted husband and children who help and care. I do not want to hurt them, but I have never been comfortable with myself, and the addition of pain and disability complicates an already complicated sitution. Conversations like this one are very interesting as well as helpful. I am very interested in everyone's viewpoint here.

What makes a day enjoyable for you? What adds quality?

Hi Jesse,
Thank you for your post. I could not have articulated it better. Everything you say rings
true for me except the part where you say if your PN worsens you will probably end your own life.

I have shared here previously that my sister committed suicide 2 1/2 years ago. I'm sure I will never do it. I am one of the people that lives behind with all that pain and what if's the suicide victims don't think about when they do what they do. Trust me at times my PN pales in comparison to the pain in my heart at the loss of my closest sister. She took part of me with her and I will carry this pain for the rest of my life. I will also live with the guilt that maybe there was something more I could have done. I also lost my mother to a certain extent that day. She will never be the same. If you have to, print this out and keep it handy for when you are feeling that way. People believe others will be better off with them. TRUST me that is NEVER true. I have participated in many suicide survivor meetings and people are devastated. So if you are able please try to get past you impulses. The next minute, hour or day will usually be better. Oh by the way, I worked with teenagers who were suicidal so I know a lot surrounding this issue. That made it even harder for me that I could not save my sister. PLEASE, PLEASE, PLEASE don't ever do it.

You talked about beliefs. I consider myself very spiritual since my PN began. I was raised Catholic and still practice but for me now it is more a spiritual thing. I actually believe that no matter what religion we are all speaking/praying to the same higher power.
Again, I thank you for your post. It is my sentiments exactly!

Suzanne,
I too have always been a people pleaser. I became a nurse to be a caregiver.
I think it is very difficult for those of us who live their lives this way to accept the help given to us. We don't like that helpless feeling. I struggle with that everyday. I actually told my husband yesterday that I felt like a loser because I had yet another doctors appt.

I think we need to believe that those who care for us welcome it. They know we've cared you them all their lives. If only my mind could believe what my hands type.
I don't come here everyday but I know I have appreciated your and others postings here. It gives me the hope I need when I need it. So, hang in there and keep posting.
Hopeful

:::::::::::::::::::::::::::::::::::::::::::::::

I understand what you mean. My suicidal compulsions are truly "compulsions" or rather very strong impulses. There is no premeditated plan or action to it. I have never attempted suicide either. I recently discovered these impulses can be a result of brain damage, as well and is actually listed on the adverse side effects from Cipro toxicity as well.

I had an MRI read to me yesterday which shows evidence of "Demylinization" that confirms that my brain readings are indeed abnormal and consistent with nerve damage. So these impulses could be from a mix of desperation and the damage itself.

This could be seen clearly when I get suicidal compulsions for no reason, even when I'm feeling fine.

About my type of suicidal compulsions: here's an analogy, it's like the people who threw themselves from the burning Twin Towers in the 911 attacks. They didn't kill themselves, they were just reacting on impulse when the fires intense heat became too much to handle. I'm sure they had no conscious control over it.

But hopefully that will never happen to me. As it is, there is no doubt I was steadily healing until just a week ago when I began to feel new and frightening neuropathy spreading through my body.

This struck me as odd, since I had been on a very steady healing pace for months.

::::::::::::::::::::::::::::::::::::::::::::::

As far as Quality of Life and Spirituality. I can't help believing there is a God, as much as I'd want to be an atheist, I can not be one. The evidence of a working God is all around me.

The answer for disasters and disease are not known, I do not have the mind of God, so I don't understand why people get sick, or even if the theme of "deserving" something has any real merit in this reality.

I do however feel this way -- here's another analogy.

Imagine two empty rooms. Except one room has a pair of shoes in it.
Now, if I asked you which room do you think had people in it, which one would you choose?

Obviously, most would say the one with the shoes in it. So even if you can't see or sense people there, there is evidence that people were there.

To me, this is why I can not be an atheist. Just like the pair of shoes in that one mysterious room, there are billions of stars, galaxies, and all forms of life, here on earth, too, which show that there is far more than just an accident of cosmic chemistry to account for the glory of existence.

Even famed atheists and evolutionary biologist Richard Dawkins, says there has to be more. He doesn't even agree with Stephen Hawkins, who says that asking what happened before the big bang is like asking what's north of the north pole? - principally, it doesn't make sense. And even Dawkins infers this. Just like we can't prove there is a God, they certainly can not prove there is not.

We as PN sufferers have been dealt a bad hand of cards, but even a bad hand can have an Ace or Wild-Card in it, so I never give up hope.

:::::::::::::::::::::::::::::::::::::::::::::::::: :::::::::::::::::::::::