Monday, December 30, 2013

A life which revolves around Fentanyl. Are we all a prisoner of something?

It is hard to describe what it's like to lose half your life to sleep.
Did you know that I wake up no earlier than noon usually? If I do wake earlier, it is a good day. Many days, later than noon sometimes means just in time to pick up my kids at 3:15. I'm sure you'd have not guessed that. The days that Shifra is done at 1:30, I often am late because of trying to wake on time and get it together.

I can wake earlier and force myself out of bed. It's either because I have to, or want to, like on Shabbat when I would love to get to synagogue. Those days, I wind up so tired in the afternoons, that if I drive, I am sleepy- dangerously sleepy. If it is Shabbat when no driving is involved, I will often sleep the whole rest of the afternoon, and sometimes into the evenings as well.

It is a cause for a huge part of depression.
Can you imagine losing half your life to sleep?

It also means:
Robert loses his dreams to pursue a career change. He thought that by now he'd be in another place professionally. He cannot go back to get a PhD as he's dreamed to do, and I wish I could support him through it. He is bogged down with lots of traveling (commuting) to a job that really no longer does 'it' for him. He is bogged down with many more hours taking care of the kids because my body is falling down sleepy.

It's the pain meds. Specifically the Fentanyl (morphine like drug- the patches I wear). I am on a high dose, and my body pays for it. Yes, my pain is less. When I had the full-on pain before the Fentanyl, I couldn't function at all.

If I had my mornings, could I be well into writing my book? Yes, I think so.
That is my dream.

This morning I found myself thinking (for the millionth time) of going off the Fentanyl.

All of you tell me that I am so brave. That would surely put it to the test, wouldn't it.
How many times can you think of something consistently without implementing it? I am really really thinking of going off. I just don't know how much pain is in there, lurking behind the patches. It could help me also to make a decision of whether or not to do a hip transplant. How much does it really hurt me?

The thing about going off the Fentanyl is that if I am in pain, I won't be up to do much anyway. Trading off one problem for another with the same outcome isn't quite a solution, is it. And if I have to choose to be on Fentanyl with low pain and sleeping problems, or high pain and needing to be resting a lot because of it, I guess I'll choose.... Fentanyl? Not so sure. I mean, I can't make that decision now, because I don't know how much pain we are talking about here.

I want to save my own life. What is the best way to do that?

But what if I am not in as much pain as the high dose of Fentanyl suggests?
Well, how did I get on a high dose? Because of pain. Consistent, crippling pain in my hip.

Again, I am stuck with no decision. What I know is that I want to go off the meds. Maybe I should just go for it. I can make an appointment with Dr Z (who I haven't seen in many months because the meds have been working fine), and talk with him about it, and start the process. It will take as long as it will take. I am on such a high dose, though, it could take up to six months or more to do it. It means a lot of flu-like symptoms, and nausea. Those are the main side effects of going off morphine.

It all feels so impossible...

I have another physical thing going on now, as a result of the months of diarrhea. Without going into detail, I probably will need a small surgical procedure to fix it. I have been avoiding taking care of it- I haven't told my doctor about it, even though it's been going on for a few months. I just can't deal with opening another issue.
It's time to deal with it. Unfortunately, it's not getting any better by itself.

I really want to be more upbeat. But this is what it is.

I dream of having a whole day to use and savor. It's a rather simple dream that most people take for granted, and even complain that their days are too long. I understand that, actually. The grass is always greener on the other side of the fence, right?

I think that at this point I am kind of afraid not to sleep late because I am worried about making it through the day and evening with the kids. I have been so conditioned to sleep late that I am actually scared not to.
There is also a problem of getting to sleep early in the evening. You'd think it's on both ends, but believe it or not, I still need a half of sleeping pill on most nights. I know you're thinking- get to sleep early and get up early; just shift everything and the problem is solved. Well, it's not. No matter how early I go to sleep, I sleep into the morning. How ever long I sleep into the late morning, I get exhausted in the part of the evening I can't go to sleep- the time I have to be getting the kids to bed. After that is done and the kids are in bed, I get a second wind that is very hard to throw off. Only a half-sleeping pill can force me back to sleep.

That also means I'd have no time to do anything myself. The kids are all in bed usually by 10, then there is cleaning the kitchen. That still leaves laundry, and, I want time do emailing, working on family schedules, and writing. Robert, who does all the family grocery shopping, comes home quite late three nights a week. After his hour+ commute, he does another hour or so of shopping and lugs everything into and out of the car, and puts it all away. Then *he* is the one to get the kids out every morning.

I need to get up the guts to get off the meds. Or not?

OK, it is 5:40 PM, and I am waiting for Ya'akov finish an appointment, and my eyes are getting tired, I can hardly keep them open. I'm going to snooze on the couch here.....

OK, well, the doctor we were at is an hour away, and even though I woke at 1pm today, I got sleepy driving home in a torrential downpour. I kept slapping my cheeks to stay awake, and Ya'akov told me when I do that it makes him nervous.

We got home safely, thank Gd. I crawled into bed shortly thereafter (Robert's day off). I have been awake for a total of six hours, and am... exhausted.

Everything we put into our bodies has a price.
This price I am paying, I can't stand it anymore. And there is no simple solution.                                                              


  1. It is good to treat the pain as long as you can keep the bowels moving. I don't know if they have medical M in Israel but maybe that would work also.

    1. They have it, and although it is a possibility for me, it's not great because of how much I drive and need to be 'present' for my kids. I've spoken to my pain doc about it, and he looks at it as a last ditch effort sort of if nothing else works.
      About the other subject- my innards have been "off" for a long time now, but to the other side- constant diarrhea. The problem I have now is from that, not constip. issues. Messed up.

  2. Not about this blog- just wanting to reach someone who reads it.... Lee D- can you send your email addy to me? Thanks!
    -the management