Monday, June 15, 2015

Philosophically speaking... life.

It's almost been two weeks since my last dose of Fentanyl. Nothing about this has been easy. I am waiting to learn what my "new normal" is, and I pray that it is not this, what I have today. It's been so up and down, it's hard to keep up with myself.

Last week was really good, actually! I went away on Thursday and Friday to a writer's course. It was sooooo good for me, and I wrote and learned so much. It was in Jerusalem. I drove there because it is actually less walking than public transportation, and because I am off the Fentanyl, I am not so sleepy at the wheel anymore. Thank Gd. I stayed overnight with a dear friend, and even got another social visit in that night! I met up with friends for dinner, and it was really special. If I was being cautious, I wouldn't have gone out that night, and life would be that much less fulfilling. (more on that in a few paragraphs.....)

Came home on Friday to the business of Shabbat approaching. thank Gd for awesome Robert... he cooked, drove kids around, and prepared tons of food for the kiddush we sponsored at shul. We had many guests, also, and it was a very full and busy Shabbat. I really did a ton... lots of cleaning, setting, chopping, clearing, serving, etc. It was much more than I felt was in my "comfort zone", but I just kept chugging because, well, you know, that's me. We even went out a bit Saturday night, but I was zonked and not much company. It's OK. The point is that I went way out of my "comfort zone".

That may explain why I am sooooo SPENT now. Yesterday and today have been really hard. I guess that is to be expected. But the pain levels are rising, and I am getting worried. Everywhere that I had pain before Fentanyl, is all coming back (mostly right hip and Gapey, and to a lesser extent the left hip). As I said, I have to wait to see what my real new "normal" is, and this, now, may be more intense pain than when I am well rested, but in life, one is not always well-rested. That is just a fact. And, add to that the issues that I am dealing with regarding sleep. and I am actually not faring so well. Broke down crying today because I don't know how much more of this I can take. I am exhausted mentally and physically. It is *hard* to live with pain. Add to that not sleeping well for many months, and I am deteriorating. Like usual, you can't really "see" that when you see me, but that has always been the case. I keep doing and going and doing and going. But you know what? There is a reason for that.

This is life as I know it. It has been eight years of major surgeries, pain, and medicines, and it's not going to change much. (I'm not saying any of the amazing GOOD from these years, but don't think it doesn't exist! Quite the opposite.) I am glad to be off the narcotics, and this is the "new" life as I know it, but we don't have a crystal ball to see into the future. I have to keep going and doing. I need sometimes to push myself and sometimes hold back. Yes, I push past my comfort zone. I do it a lot. Yes, I pay for it. But I am *living*. What I mean is, if this is "life as I know it", than I need to LIVE it as fully as possible. The bad days really can be very bad, like today. I wish I didn't have such peaks and valleys in my life. I'd prefer even keel, but that is not what I have. If I work to create even keel, I feel that life will be missing it's color. Even keel would mean opting out of many things that I do, putting even more of the load on Robert, and being on a general lower level for the whole family, and myself. I would have a shorter fuse, also, because I need a basic level of order and cleanliness in the house. It's not simple, by any means. Life with chronic illness is an entirely different mindset than life without. What I am saying in too many words, is that I *know* what it means to overdo it. I *know* when it is too much for me, and I do it anyway. That doesn't make it a good thing, or a bad thing, it just *is*. In the best of all worlds, I wouldn't "overdo" it, ever, and life might be more balanced. But we don't live in the best of all possible worlds. I am alive, and I want to live. And if I live, I have to live with chronic pain and exhaustion. That's just the way it is. That's the hand of cards I drew. The pain and exhaustion are better when I rest a lot. But I am not the "rest a lot" type... even though this life of the past 8 years yeilded much more resting than I could have ever pictured myslef doing.

I just don't how much more I can deal with sleep problems and higher pain levels. It's getting me.
But we're waiting this out, and coping as best we can.


  1. This blog feels like a big accomplishment in acknowledging your limitations and yet also realizing there is a benefit to pushing through them to life a full life. Wow. Keep going!

  2. I heard a story on NPR's Radiolab, about pain and the brain, that I thought you'd find interesting. You can find it at: -- the relevant piece starts around 13:45, and goes about 12 minutes.

    Or you can click "Back to Episode" (under the title) and hear the whole thing -- it's worth a listen.

    1. But Lee, in the end (spoiler alert), the woman does not succeed in creating the pain-reducing thought patterns herself. That was a bummer. But you were right, it was very interesting for the sake of learning things.