No matter what you celebrate, or do not celebrate, about this midwinter season, I hope everyone had a low-pain, low-stress, and enjoyable time over the holidays. To add some jolly to everyone’s mood, I offer you these photos of two of the lights of my life.
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.
I made chicken noodle soup today. I use two commercially prepared ingredients (broth and frozen chicken breast) (well, and the noodles, but who makes home-made noodles these days?), so it is a pretty simple recipe, but home-made chicken noodle soup is a significant step forward in my ability to be active. It has been months since I’ve been able to really cook, and I have missed it. That I got through an entire recipe makes me very pleased, for many reasons.
One of the things I find difficult about my disability is the loss of independence. If I’m going to have a home-cooked meal, a lot of times, I need someone to cook it for me. It is a wonderful feeling to be able to prepare my own healthy food, even if it is only occasionally.
Another aspect of disability that I struggle with is that I used to contribute so much more to the work of my household than I can now. It feels wonderful to cook a meal for my sweetie that will feed us with leftovers for a couple days. It makes me feel like I have an important role to fill in the household. My disability is teaching me that I contribute to my household in ways that are not based in physical labor, and I am learning how to find my importance in those other contributions. But the lesson is made less harsh when I have the ability to at least occasionally pitch in in ways that are the “instant gratification” contributions like cooking and cleaning.
Finally, being able to cook for myself gives me more control over my diet, which contributes to my health. This day of cooking gives me hope that I’ll be able to eat a little more healthy as I continue to recover from my medication changes, instead of needing to eat so many quick-and-easy prepared foods.
So, even though I’m rather exhausted now, I am extremely pleased with my victory of progress today. My disability has given me a new appreciation for something I used to enjoy at times, but at other times find tedious. Hello, chores! I am happy to be able to do these little tasks now. What a lovely gift of perspective, hard-won though it may be, to have appreciation, mindfulness, and joy in these daily tasks.
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.
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.