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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.

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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! ]

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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