I’m celebrating using the last class on my 20-class yoga pass. It only took 10 months to go to 20 classes! Each card is good for a year and the last one expired before I got to use all the classes on it.
I mention yoga so much that it probably seems like I go to classes all the time. I have all five classes I like most on my calendar and try to go to almost every one. About an hour before class starts, I begin assessing whether or not I’ll be able to make it through the class. The answer is far more often “no” than “yes.” It’s frustrating and sometimes infuriating to not be able to make yet another class, but I love it so much that I keep trying.
Hmm, that pretty much sums up my approach to chronic illness. Can’t do the things I want to do? Keep trying and every once in a while I’ll get to. Had another treatment fail? Keep trying and maybe I’ll find one that helps. Feel like there’s nothing good in a life with chronic illness? Keep trying to appreciate even the smallest things and I’ll notice some of the goodness that surrounds me.
I know few things for certain, but am positive that I feel better than I have in ages because I kept trying when all I wanted to do was quit. I threw myself pity parties (sometimes for months) and took treatment breaks; I yelled a lot about how much it sucks to have chronic illness. But time after time, I picked myself up and tried again.
Giving up is a great way to stay exactly where you are — or to get even sicker. That wasn’t an acceptable choice for me, so I kept trying. It often felt like I was going nowhere, like my symptoms would never improve, that all the work was for nothing. But when my options were keep trying, stay stuck, or feel even worse, there was only one way I was willing to go.
My diet has the same frustrations as chronic illness on a smaller scale. Sometimes it’s good, sometimes it’s terrible. Most of the time, it’s something I really don’t like, but accept that I have to live with it for now. While a diet of 40 foods is wonderful compared to a year or two ago, it’s not enough. I won’t stay here forever. I see no way out of the current restrictions, but there has to be something. Despite not knowing how I can possibly expand my diet (preferably by reducing my reactivity to foods), I keep trying. I can’t not.
In Chronic Pain Workshop Totally Unprepared for Patient With Chronic Pain, Sarcozona, who is a PhD student with chronic migraine, highlights a serious issue for people with all kinds of chronic illness: Being sick doesn’t come with an instruction manual. When a chronically ill person seeks out guidance, the advice they find is often useless at best; some of it is actively harmful. Sarcozona’s experience in a chronic illness workshop falls somewhere in between, largely because she used it to fuel her own fire rather than internalizing the criticism and bad advice.
She attended a multi-week workshop on living with chronic pain that was developed by a Big Name Medical Center. The program has received high acclaim; I even considered becoming a facilitator for it. Her experience was awful. The facilitator was certainly a problem, but the book the workshop was based on was also terrible. Here’s her take on the book:
“It is also offensive and harmful, suggesting that people who are struggling are at fault for being bad ‘self-managers,’ a phrase I quickly came to loathe. The book constantly minimizes the struggles of patients and oversimplifies and over sells solutions. It almost completely ignores the enormous structural issues they must deal with. The few times it mentions structural issues, it does so in a way that puts all responsibility on the patient – it’s all about ‘managing’ your response (Got the blues because private insurance won’t cover your pre-existing condition and you have to move into the nursing home with abuse problems? Go scrub the bathroom with a toothbrush to distract yourself!). It hardly mentions uncertainty, one of the biggest struggles to living with many chronic conditions. It cites discredited or old and incorrect research in several places or is just downright ignorant or tone deaf.”
(Yes, scrubbing the bathroom with a toothbrush was an actual recommendation for coping with the emotional fallout of chronic pain. When I was at my sickest, scrubbing my teeth with a toothbrush was sometimes impossible.)
That’s only a short excerpt. Take a look at Sarcozona’s original post – it’s insightful, informative and well-written. While you’re there, checkout her other wise writing on migraine.
Not all chronic illness workshops miss the mark. The mindfulness-based stress reduction workshop I did was fantastic. I was frustrated and annoyed with the concepts at the time – “Yeah, like I can think of the pain as a ‘sensation'” and “She has no idea what it’s like to feel like I do” were among my kinder thoughts – but they have changed the way I think about illness and how I approach life in general. In a related secular take on Buddhism, How to Be Sick, by Toni Bernhard, is a great resource. (She’s at work on a book about using mindfulness to cope with chronic illness. I’m eager to see what she has to say and how it complements the MBSR materials). I also recommend Life Disrupted, by Laurie Edwards. It isn’t as directly instructional as How to Be Sick, but contains much food for thought. I’m working on a review of it that I hope to share with you soon.
Have you done a chronic illness workshop that helped you or read any particularly useful books? If so, please share!
Acetaminophen, the active ingredient in Tylenol, is an over-the-counter drug that many people think is benign. It’s been regarded as safe enough to use through pregnancy. As someone who used to pop large numbers of OTC painkillers each day, I’m increasingly horrified when new information comes out about the safety risks of acetaminophen. Most people don’t take high enough doses to be in danger, but people with headache disorders or chronic pain are at risk of taking too much without even knowing it. The risk isn’t necessarily in long-term use; exceeding the maximum daily dose in one 24-hour period can cause severe liver damage.
This infographic from the University of Florida’s pharmacy program highlights some of the risks and dangers of acetaminophen. If you’re concerned about your acetaminophen use, please talk to your doctor about alternatives. Some of the alternatives recommended below, like NSAIDs and opioids, also have limits to how often they should be taken; many opioids are packaged in pills that contain acetaminophen, which negates their use as an acetaminophen substitute.
(Click anywhere in the infographic for a larger, easier-to-read version.)
Unless you’re a new reader, you’re probably aware that 2014 has been an incredible year for me. I’ve found myself tearing up a lot the last few weeks as I reflect on the year. My loved ones have also been tearing up for the same reason, which reinforces how fortunate I am to have their support and love.
This year, I’ve felt better than I have in my adult life. I no longer have one continuous migraine of varying severity. When migraines do come, I can usually stop them or at least reduce their intensity with triptans, which are effective for me for the first time ever. My diet is still very restrictive, but I’m up to about 40 foods (whether I think that’s good or not depends on my level of frustration on any given day). I’m writing a ton. I don’t feel entirely normal, chronic illness has a greater say in my life than I’d like, and I still feel like I’m catching up on all that fell to the wayside when I was sick. But most of the time I feel like I’m making huge strides.
I haven’t made a New Year’s resolution since my first “unresolution” in 2013, when I resolved to recognize that I’m doing the best I can. Self-compassion and recognizing my own strength were big themes for me this year. I’m the happiest with myself and my life that I’ve ever been. In that tradition, I am committed in 2015 to mindfully experiencing my life as it unfolds. (And working on getting my writing published on a wider scale. That’s not a resolution or unresolution — it’s just what I know I need to focus on next in my life.)
I wish you peace and healing in the new year. If you’re struggling with severe pain or illness, I hope you find some relief, whether physical or emotional (preferably both). I thank you for celebrating my successes with me this year and for your support for the past (almost) 10 years. I look forward to learning more from all of you, as I have every day since starting The Daily Headache. Take good care of yourself.
Whenever I’m away from the blog unannounced for more than a week, worried emails start arriving in my inbox. I’m doing fine — actually, except for Christmas Eve and Christmas day, I’ve felt quite good. In addition to holiday busyness, in the last week, Hart took four straight days off work and only worked a half day on a fifth. This hasn’t happened since starting TheraSpecs, so I wanted to spend as much time as possible with him. It’s been wonderful. Mostly we played board games and spent time with family. We even went out to dinner last night and, because I took a triptan immediately after eating, no migraine developed at all. That’s also unheard of, so I’m pretty excited.
That reminds me of something else I’ve noticed in the last few weeks: I’ve been taking off my TheraSpecs a lot. For three years, I’ve worn them every waking moment except for checking to see if meat was cooked through (rose-colored glasses make chicken look under-done even when it’s overcooked). I didn’t wear them at all during dinner last night and have been taking them off for hours at a time to play games. This is another of the many signs that my health has improved drastically this year and continues to change.
I’ll share more reflections with you later this week. In the meantime, I didn’t want you to worry and wanted to let you know I’ll respond to comments soon.