Tag Archives: pain

Life Tweaks

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I’ve tweaked a few things about my life lately that seem to be helping. First, sweetie and I have put some more effort into our meals. I’m pretty good at planning well-rounded meals, figuring out when things need to be defrosted and making shopping lists. My sweetie is not so good at all that, but can do a lot of the standing and stirring or chopping that takes me forever and makes me hurt, so we have become more team-oriented and are eating better, which makes everyone feel better and lets us save time by eating leftovers instead of figuring out something to throw together at the last minute.

We also scheduled time to spend together during my best time of day, which happens to be around 2pm. By the time sweetie gets home from work, my mental and social capabilities are usually pretty adversely affected by my pain level. While I do get to feeling pretty desperate for non-canine social contact, by the time we’ve taken care of food and such necessities, many evenings I just want to disappear in a book or TV show. Getting to eat leftovers for dinner helps with this, but it’s sad that sweetie misses the parts of the day where I can think and interact without it being so much work. So we’ve decided to try to schedule occasional “lunch dates” on days he can split up his work shift and spend time together that is more enjoyable. Our first one was this week and was very nice–I feel like we’re much better caught-up than we have been lately, and that I was much more able to be fully present for our conversation.

I’m finding it’s really important to think creatively about what can be adjusted to make life with CRPS work better. The timing of when to sleep, take medications, spend social time, prepare food, all that can be very flexible when you really think on it. While I do keep a pretty regular schedule, because I find I sleep better and thus have less pain when I do, if the timing of something is not really working, I can often find ways to adjust my schedule so that things work better. An hourly pain journal was really helpful when I first started with this, but now I find I can get a pretty good idea of my patterns without one, although if I needed to make a drastic change I might need to do the journal again to make sure I get the results I’m looking for. With Pain Brain, it’s usually better to trust important things to paper or the computer than my memory!

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A Day of Arguing with Myself

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It’s only midday, and already I’m sick of arguing with myself. I just had to look up the rules for capitalization in titles because I couldn’t remember if I should capitalize “with” or not, and it was looking like something else I could spin my head around indefinitely. Thank goodness for Google.

My major arguments this morning have been on two subjects. First, I woke up feeling not-great and not-miserable.

[Side Note: If you don’t have chronic pain, and you woke up feeling like I woke up feeling this morning, you would probably call in to work and/or get a loved one to take you to the hospital, but my definitions of not-miserable have undergone a radical shift in the past few years. You’d be amazed at what a person can be happy to live with after enough practice. I don’t say this to make you feel sorry for me, or bad for complaining about your own stuff. I actually feel–I guess you could say that I feel reluctantly honored that the universe has bestowed this lesson of what I am capable of getting out of life upon me. I’ve been able to pare away some of the fluff of existence and get down to some of the more important things, and learn to not get as worked up about some of the less important things. I can’t say that I’m any happier than I used to be, although perhaps that will come. I can say I’m not as unhappy and I feel like my life has more reality to it, even if I do struggle with my sense of purpose at times. Get back to me in a few more years and perhaps I’ll be able to make more sense out of this than I can at the moment. =-)]

So my day began with what has become The Consuming Question lately–how much pain medicine should I take? As you may remember, I recently tapered off of morphine, started taking vicodin as a maintenance painreliever instead of a breakthrough painreliever in order to cope with the pain of coming off the morphine, and then began to taper off of the vicodin. This is not a function of addiction, by the way, just a function of the way one’s body adapts to having high levels of opioid medications in one’s system, and while I am blessed to not feel the need that an addict feels without his or her substance, the pain of being deficient in opioids when one’s body has added too many opioid receptors (also known as withdrawal) is bad enough. Honestly, I have no idea how an addict ever manages to quit.

Anyway, I had agonizingly inched my pain reliever levels down to four half-pills (of an extra-strength dosage) by the end

English: Vicodin tablets Italiano: Pillole di ...

of the MLK 3-day weekend. Since I had gotten stuck at five whole pills for about five weeks, this is encouraging, but I really want to have a chance for my body to get accustomed to ZERO added opioids–that way, when I do have a pain flare or a bad day, taking a vicodin will help a lot instead of barely at all. So this morning when I felt not-miserable, I thought, “Hey, maybe I can just stop taking all my pills and be done with this in about 3 days!”

Of course, I’ve tried that before, and it’s never worked–inevitably, if I drop my dosage too much, I end up getting a CRPS full-body flare from the withdrawal pain, and having to bounce back to an increased dosage just to manage the flare, generally always settling back to exactly where I was before. But it’s just so tempting to try and get it all done with so I don’t have to keep inching down the dose, dealing with the withdrawal pain for 3-5 days, not being up to do much of anything for quite some time after that, and then doing it again. I’ve been at this for about 4 months now. It sucks. I am ready to get to the part where I get to have some good days, and can effectively treat the bad days. I’m past ready.

So the morning was spent getting more and more painful, until midday when I was about to be down two halves instead of just the first one and I decided if I skipped the second as well, I’d never make it to my early evening appointment. So–I may be able to get down to three halves without too much trouble, or I may have to bounce back to four, but no cold turkeys–or even moderately chilled turkeys–for this cat today, and possibly a wasted morning. Ah, well.

The other subject on my mind for debate this morning was this Coursera class I’m signed up for. It’s on fantasy and science fiction and looks really interesting, but it requires a novel worth of reading and an essay every week. I went for it in the first place because even if I quit or decide not to do the homework or whatever, there won’t be any negative consequences–the courses are free, and if you don’t pass you just don’t get the Certificate of Completion (which doesn’t count for a whole lot anyway–it isn’t college credit or anything). But not having much to lose, while it did make it easy for me sign up for the course, also makes it easier to quit, and I think about quitting daily. I’d like to prove to myself that I can still accomplish something like this, despite my disability. But I also know that this might not be the right time to do it, or the right level at which to start (there are lighter-workload classes on the site). At the moment, I haven’t quit yet. But I feel like it’s going to be up in the air for the 11 weeks of the course, and all the deliberating whether I should give up or not is already a bit exhausting.

I’ve had similar thoughts about this blog, to be honest. I’m kind of an expert at starting projects and then wandering off to something else without finishing them. But the other bloggers on my reading list and the bloggers and non-bloggers who read Attempting Perfection are really important to me. My blog makes me feel like I’m making a contribution to the world, and while I may not be able to be as consistent about posting as I would prefer, this is something that is flexible enough that I can do it, disabled or not. And I still have things to get out there about pain, life with pain, and what we can do about it.

So the blog, I’m sticking with for this year. My little pipeline into the bigger world. And the rest I’ll just have to take one day at a time–just like the rest of my life. Keep on keeping on, my friends! See you soon.

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CRPS and Noise Sensitivity

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Nervous system. Français : Système nerveux.

Nervous system. Français : Système nerveux. (Photo credit: Wikipedia)

I was just reading this paper on CRPS. One the points of the paper is that in CRPS patients, startle responses, which make normal pain decrease (so one can deal with the threat better), make CRPS pain even worse. They go on to connect the data to the dysfunctional parts of the nervous system unique to CRPS.

What I found personally applicable to my life, however, is that they used a sudden loud noise to test their subjects, who reported significant increase in pain and sensitivity, especially when the noise was on the same side of the body in which the CRPS was found. In our noise-polluted world, as well as in our daily lives, we run across startling loud noises more or less frequently depending on our environment. It seems like this is one of those minor, unintuitive things that, as people who have CRPS, we may be able use to decrease our pain.

We already know that CRPS pain is heightened by emotional distress. But overstimulating environments could also be a pain-increasing influence that we can attempt to minimize, by our choices in where we live as well as the places we go outside the home.

I’ve always been very sensitive to noise, but I think since I got CRPS that sensitivity has become greater. I know I do tend to feel more stressed than I would like when the neighbors all too frequently play their music loud enough that I can hear it in my apartment, but I had not made the connection that the noises from the neighborhood could be directly affecting my pain. I do know that the next time I move house, I’ll be looking for somewhere with a little more peace and quiet than my current abode. And if I return to work, some day, I will make a quiet environment one of the things I look for in a workplace.

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Waste-of-Time Meditation

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As anyone who has ever gone through a convalescence knows, it can be difficult not to jump ahead in the healing process and feel ready to take on the world mentally before the body is truly ready. Lately, the sheer amount of passive entertainment I’ve been taking in has been feeling more and more like an enormous waste of time.

This is a good sign–sort of. It means that I have enough extra mental energy to fret a bit about how I’m spending my time, which means I’m feeling better than I have been the last couple months. I’m in that middle phase, wanting to be able to do more, but not doing it. My kitchen table is piled with sewing materials and patterns, but I’m still not ready to get down to sewing.

The mindfullness training I’m doing be meditating is helpful here. I have two new complimentary projects I’m working on right now. First, is to come back to now. Right now, I am recovering from the last couple months, and if what I feel up to is watching television shows or reading novels for most of the day, it is what it is. I was really fighting this until my lovely yoga therapist assigned me to refocus on accepting my current activity level, and even accepting the resistance I feel to that. So I pause for acceptance through the day.

My second assignment was from my fantastic psych therapist. I’m to spend 10 minutes a day really getting into the feeling of what a waste of time it is to do what I’m doing. To meditate on it and explore it. And then, to put it away until the following day. Ten minutes, no more, no less.

This exploration has been interesting. I’m feeling much more peaceful in general, and discovering some “kinks” in my thought patterns that mean I’m harder on myself than necessary. Again, it comes down to me being grateful to be exactly where I am, learning and growing and healing. It’s hard work, and it’s important work, and I’m grateful to have some excellent teachers in my life, at the right time for it to do me good.

Life After Morphine

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Cover of "Pain: The Science of Suffering&...

Cover of Pain: The Science of Suffering

Things have been a little disappointing lately. You see, a couple months ago, I decided I was starting to feel good enough that I could afford to remove morphine from my daily medications. So I came up with a plan to taper off of it with my doctor, since I have been taking it long enough for my body to depend on having a lot of opioids in my system and therefore would feel withdrawal when it was taken away. Tapering makes the withdrawal less bad than stopping it all completely, which is so painful it creates unnecessary health risks. I have spent the last two months slowly and agonizingly reducing my dose, living for the day when all the withdrawals would be over and my body could recover and feel healthier than ever before, without the side effects of morphine and with effective breakthrough medication for pain flares..

If I had been thinking, I could have predicted the situation in which I am finding myself. But I wasn’t thinking critically, so much as hopefully (and, sometimes, desperately) about the end of my morphine taper. I think that part of me realized that things would take some time to level out, and I would need to recover from all that pain and stress from putting myself through withdrawals. But I had just a touch of rose-tinted glasses on about my morphine taper. I think I needed to have that hope that things would be better as soon as I got rid of all that morphine in my system.

The self-critical part of me speaks up to say that it COULD have been all sunshine and roses. If only I hadn’t taken vicodin to cope with the withdrawal pain. If only I’d been stronger-willed and stuck it out without breakthrough medication. But you know what? The smart part of me knows that that is a load of horse manure.

Pain management isn’t just about suffering. Pain is only good for us in small doses, in response to discreet events. CRPS is pain gone wrong. Our society has some funny ideas about pain. We seem to believe that experiencing pain makes us better in some way. Stronger, or stronger-willed. It builds character. It is something that we can fight against, and a pure and good person would be able to handle pain without any drugs. Horse manure, I tell you, as I tell myself.

See, they’ve done some studies on this. And it turns out that chronic pain makes your body heal slower. It raises your blood pressure and your heart rate, making you more prone to cardiac problems. It fills your body with stress hormones that reroute the things your body needs to be doing to live longer to put it in fight or flight mode so it can survive an emergency–but it isn’t an emergency. Chronic pain is bad for you, and no beneficial effects of chronic pain have been found.

(Want to know more about this? Read the book Pain: The Science of Suffering by Patrick Wall)

So I took my vicodin, another opioid medication, to cope with the pain that originated from morphine withdrawals but continued with my CRPS (which, as I’ve said before, loves a party). Despite my cultural training, it was the right choice. Now, I’m done with morphine. Forever, I hope. But I’m still taking as many vicodin as my label lets me.

At first, I tried to remove one pill a day. Guess what? Withdrawal agony, of course. But the great thing about vicodin is that you can cut the pills into pieces–morphine is slow-release, and when you cut them you mess up the coating and you get too much early and too little later. It’s okay to cut vicodin, so I tried taking a half away, and finally went down by a quarter of a pill.

I’m finally getting some of my energy back! I still am not feeling all that great the majority of the time, and I think until I get all this opioid medication out of my system for a little while and then get myself more active again, I won’t be feeling all that great. But I cleaned my car, which I’ve needed to do for three or more months. I’m doing training sessions with the dogs again. I folded some laundry. All in the last few days. Things are looking up.

While I’m not skipping through fields of daisies at the moment, this  is a huge improvement over the last couple months. It’s a little disappointing that there is no skipping quite yet, but it’s a perfectly reasonable place to be, cleaning my car and folding laundry. Skipping isn’t entirely off the table, either. Maybe next month.

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