Self-care on the tough days

I really like Darlene Cohen’s description of “down ‘n’ dirty comfort” on the days in which you’ve hit your limit. Cohen lived with painful rheumatoid arthritis for many years, and unfortunately she is no longer with us. She died from cancer earlier this year. She knew what it was like to hit bottom, and she had some wonderful ideas about what to do about it. Cohen wrote in “Turning Suffering Inside Out: A Zen Approach to Living with Physical and Emotional Pain:”

Even though it’s an ideal time to “embrace the suffering” or learn to “dance with disaster,” you don’t care. Furthermore, you don’t care that you don’t care. You’ve had it with trying to expand your consciousness. You hate your life and everybody in it. Nobody else cares; why should you? You’re at the end of your rope. It’s time for down ‘n’ dirty comfort. What you need is whatever will get you through the next few hours. (p. 36)

Now, I’m a big fan of reframing, of seeing the lessons in our suffering that help us to develop more wisdom, compassion, and love. But I think that on the days in which we feel most frustrated and downtrodden, we find our greatest compassion in our compassionate actions toward ourselves. If it means pampering ourselves for the day, then so be it. Cohen wrote that when we feel this crappy, we can “start with a refuge, a place to which to retreat when you can’t cope–just to find out what relief feels like.”

She advised us to write a list of activities that can help us feel like we have a refuge:
More

“Take me home from the Oscars” – A book review and analysis

Summary:

In the memoir “Take me home from the Oscars: Arthritis, television, fashion and me” Christine Schwab wrote about the trials and tribulations that she endured with rheumatoid arthritis (RA) in the 1990’s. She was working in television as a fashion and beauty reporter (and as far as I know, she continues to work in this capacity). She believed that in her field it would have been professional suicide to let anyone know that she had RA, so she hid it, even though she was often in unbearable or near unbearable pain. Schwab wrote about many of the details of her professional world and how difficult it was for her to manage her pain and her job simulataneously. Like many other chronic illness patients, she suffered emotionally from living with a debilitating disease. Schwab was lucky in several respects, however, she had a doctor who she trusted and a husband who was a major source of support for her. Eventually she found a treatment that helped her to attain long-term remission. Ultimately, after years of hiding her RA, Schwab switched gears and decided to help bring awareness to what it is like to live with RA.

A deeper analysis:

Schwab recounts in great detail the emotional struggles that she went through in the years before she found an effective treatment. In so doing, she tells the reader how she coped with living with RA. As a veteran patient of an autoimmune disease (inflammatory bowel disease) that is thought to be a “cousin” to RA, I could identify with many of the treatments and coping techniques that Schwab wrote about. But I’m not only an IBD patient, I’ve also done research on coping, and I think that we can learn from Schwab’s experiences.

Coping strengths:

* Perseverance – Schwab exemplified perseverance when she refused to drop out of a research study that lasted 9 months. She was not allowed to take any other medicines and she was given only a placebo (though she did not know that at the time). She endured a terrible flare during the last 3 months of the study, but she was determined to stick it out because she knew that if she did, she would be eligible to receive the real medicine after the study. It was that medicine that eventually helped her to achieve remission.

More

Befriending anxiety

Before I had a chronic illness the situations in my life that triggered the most anxiety were going on dates, difficulties in relationships, and taking academic exams. Back in those days, one of my closest friends in college used to call me “the Big Easy” (and no, I was not promiscuous!). I was really easygoing and it took a lot to unnerve me.  Starting at the age of 24, chronic illness and pain altered my nervous system in a way that made me much more susceptible to chronic anxiety.

The first time chronic anxiety hit me hard was in 1999, about a year after I had first been diagnosed with inflammatory bowel disease (IBD). I re-washed dishes after they had been through the dishwasher because I was scared that there might be some bacteria left on the dishes that would trigger another flare. I knew that my fears were irrational and yet it was so difficult to stop my behaviors. So I sought help from a counselor.

The counselor helped me see that I was trying desperately to control my circumstances. The flares of IBD that I had experienced scared me and I wanted to prevent them in any way possible. But my mind had made the error of thinking that doing things like rewashing dishes would somehow protect me from future flares of IBD. The corticosteroids that I took during that time did not help as they exacerbated every emotion I felt and made me jumpy.

In 2000, I visited Plum Village, a Buddhist monastery and meditation practice center in the south of France. You can read about my experience here. It was there that I experienced a deep sense of inner peace and learned some wonderful techniques for coping with my anxiety. The practice of mindfulness meditation helped me to see my fears more clearly. I saw how much I feared losing control, and one day I wrote the following in my journal:

More

“What to say to someone who’s sick” – A blog response

Ideally, you would be able to take the time to learn good communication skills (see below) before talking to your sick friend/family member.

But what if you don’t have time to learn good communication skills before visiting or talking to your sick friend/family member?

If you are going to visit a sick friend or family member very soon and you want some ideas about what to say, my suggestion is to focus more on your presence than your words. Your presence speaks volumes. Try to focus on listening to the person with 100% of your being. In the moments that you are with your friend or family member, listening to him or her should seem like the most important thing in your life. If your mind wanders to your “to-do list” or to some concern in your life, catch it, and focus on being there for your friend/family member. If there is an “awkward silence” don’t worry about it. Breathe deeply during the silence and then let your friend or family member know that s/he doesn’t have to say anything, you are there to support him or her in whatever way possible and you are glad just to be there with him or her. If you can’t think of anything to say then be honest, say something like, “I care about you and I’m here for you, even if I don’t know what to say or do.”

**********************

A blog response to “What to say to someone who’s sick,” an article by Bruce Feiler.

I went through hell when I was really sick and in a lot of pain, but it was my own unique hell.

The blogosphere tends to oversimplify the complexity of serious issues with clever titles and tips. Five ways to resolve conflict. Ten ways to be happy. Eleven ways to be unremarkably average. Just read a blog post and your life can be so much better afterwards. But I was surprised to read a clever tip list like this in the New York Times concerning “what to say to someone who’s sick.”

The author, Bruce Feiler, a cancer veteran, wrote two lists with the do’s and don’t’s of communicating with friends and family members who are ill. I have no doubt that Feiler had the best of intentions in writing his article. He went through the hell of cancer and he didn’t want others to have to deal with the same kinds of frustrations he dealt with. But Feiler forgot that his hell was unique and that his preferences as a patient were unique.

Let’s start with his first “don’t” tip, “What can I do to help?” Feiler thinks this question unnecessarily burdens the patient. But that is just his opinion. Personally, I loved when friends asked me this question because I was often in need of help and it was hard for me–Miss super independent–to admit it. When I was severely ill, I frequently needed a ride home from the hospital and I was so glad when someone asked me what they could do to help. “Pick me up,” I would respond. Sometimes I had to take a taxi, if it was, for example at 6am or if I couldn’t find a ride. It meant a world of difference to me to have a friend or family member pick me up instead of taking a taxi. I basked in the care and warmth of my friend/family member the whole way home.

More

“Never give up”

“No matter what is going on
Never give up
Develop the heart…”

H.H. the 14th Dalai Lama (to read the rest of the poem, click here)

Earlier this week, someone found this blog by typing in the search terms “severe chronic pelvic pain=want to die.” I don’t know who this person was but I felt deep sorrow when I read those words. I thought about how many others there are out there who feel the same way but did not type in the search terms into Google. It made me determined to do something, even if that person never returns to read my blog. There are a lot of people suffering tremendously from medical conditions like pelvic pain and they can’t really talk about their pain and suffering much with others. I’ve been there. I know it is hard.

I’ve written about the severe depression that I went through in 2001, but I didn’t go into great depth about the details of my story.

As I wrote in the earlier entry, I had just survived a life-threatening episode of Crohn’s colitis and I was living with my family in Indiana. I was on disability and was in a lot of physical pain and discomfort.

The doctors in the hospital had never seen a case like mine before. At first, I was a “mystery of science” patient but careful “Dr. House”-like sleuthing showed that it was inflammatory bowel disease in combination with a virus and a bacteria from antibiotics (c. difficile) that had nearly pulverized my intestines. While I was in the hospital, the doctors said that they had only read of similar cases in the medical literature and that in all those cases the patients were immuno-suppressed. When was the last time that I had had an HIV test, they wanted to know. Would I be willing to have another HIV test?

More

Living with uncertainty

Earlier this week I went to my doctor to have my moles checked out. It had been three years since a doctor looked at them. I explained to the doc that I am at high-risk for melanoma cancer because:

1) I lived in Florida during my teenage years and got so burned that my face looked like it had been microwaved,

2) I was on immunosuppressant medicines for 13 years, and

3) My maternal grandparents both had moles that became cancerous, though the moles were removed early (level 1 or 2).

My doctor looked at my back and then asked me to wait as he wanted to consult with a colleague. Some 15 minutes later (good thing I brought a book) she came in and looked at the moles then asked me how long I had had a particularly  large one.

“Många år” (many years) I said in Swedish. She assured me it was fine then. My doctor said that he couldn’t remove all the moles that all of his patients had. We just have to live with some uncertainty. I told him I knew lots about living with uncertainty.

I’ve lived with uncertainty for so long that coping with a long-standing sense of uncertainty has become a part of my way of life. In the five or so years after I was diagnosed with inflammatory bowel disease (1998) I tried to control everything that I could to maintain some semblance of security. I did not want to get sick again so I washed dishes twice or washed my hands many, many times. I don’t like labels, but you could say it was probably some version of obsessive compulsive disorder (OCD).

It took many years of mindfulness practice, therapy and self-awareness to loosen some of the habit patterns that I developed during the years that my illness was most severe (see the article I wrote: Is Your Need for Control Out of Control?). The illness almost killed me and triggered an enormous amount of suffering and I never wanted to go through that again. Strangely enough, I handled acute episodes of illness quite well, even when I was hospitalized and not allowed to eat for weeks at a time.

More

Living well with a chronic illness – interview on “Open Questions Podcast”

In this interview, Irina Almgren of the “Open Questions Podcast” asked questions to me and Andy McClellan about how we live with chronic illness. We discussed the obstacles of living in a society that pushes people to push themselves and ignore their bodies. We also talked about how the hyper-emphasis on “doing” in our society–on being productive all the time–meant that severe illness triggered crises of identity because we could no longer keep up at the insane pace that most of society runs at. At the same time, in letting go of “doing,” we found so much more about who we really are through “being.” In time, both Andy and I came to see our challenges in living with illness as opportunities to develop self-awareness, compassion and love.

Andy lives with chronic fatigue syndrome and writes an amazing blog called The Long and Winding Road.

You can listen to Part 1 here: OQ5: Living well with a chronic illness, Part 1 (download it) and Part 2 here: OQ6: Living well with a chronic illness, Part 2 (download it).

Milestones and celebrations

Two days ago I celebrated eight years of being hospital-free. As I wrote on my Facebook status update:

On May 3, 2003, I walked out of Georgetown University Hospital with a determination never to be admitted again as an IBD patient. I had been a “frequent flyer” at that hospital for almost 3 years due to severe Crohn’s colitis flares. Today I celebrate 8 years of being hospital-free. To my Crohn’s buddies and friends with health challenges: “Nothing is impossible” ~ Christopher Reeve

It is amazing to me that I actually was never admitted again to the hospital for IBD (inflammatory bowel disease). I was so terribly sick! I’ve written about the different causes and conditions that I believe helped me to recover, but the truth is, I really don’t know for sure. I found some combination of health habits that worked for me. And for almost exactly six years now I have been free of Crohn’s colitis. There are other milestones too: for almost three years I have been free of sciatica pain; for more than three years I have been free of migraine headaches; and for almost one month I have been free of chronic UTIs (gotta start somewhere!).

How do I celebrate such milestones? By eating lots of vegetables, fruits, and high-fiber foods! By thanking everyone who has been with me on my healing journeys. By appreciating the present moment. And by reflecting, at least a little bit, on what illness and pain have taught me.

I read through some of my past journal entries and almost exactly six years ago, I wrote the following in my journal:

Kitten Snickers (the pet name my sister gave to Crohn’s colitis) has taught me about life and death, as I have almost died from severe episodes. But Kitten Snickers has also taught me about love. When there was nothing else for me to hold onto — when I was floating in the moment to moment uncertainty of whether I would survive — when I was overwhelmed by pain and discomfort and feeling trapped — I kept coming back to the experience of love. It was something of a calling. A calling to be right there in the thick of the suffering and to make space within it. And the more I could rest there the more space there was. Sometimes I would close my eyes and feel like there was so much space in my body that I had expanded past the outskirts of the galaxy into nebulae. Only it no longer felt like me. It was the more than me that is love.

More

Discipline is Freedom

This excerpt is from my latest post on Elephant Journal:

In January 2001 I almost died from a severe flare of inflammatory bowel disease (Crohn’s colitis). While I was in the hospital, my father brought me a book about qigong. He showed me how to do a standing meditation pose and I tried to do it every day for 30 seconds.

When I was well enough to live on my own again, I lived in Washington, DC, where two dharma teachers at the Mindfulness Practice Center of Fairfax encouraged me to practice qigong. One of them gave me a book and a video and suggested that I try to practice qigong every day for 100 days. So on March 9, 2001 I committed to practicing qigong every day for 100 days.

As of today, I have practiced qigong every day for more than 3,650 days…

Read the whole post here: Discipline is Freedom.

Patience is much more than a virtue

Patience is a spiritual practice.

Recently I wrote about patience as one of the gifts of illness. As difficult as it is to bear the pain, the discomfort, the distress and the deprivation, we grow through these kinds of experiences. I know, it is hard as hell sometimes. We want ease. We want rest. We want peace of mind. We are human, of course we do! And yet our plight is not without fruit. We stretch our patience muscle in ways we never thought possible. We learn about ourselves.

There have been times in my life in which I was not allowed to eat anything at all. The doctors in the hospital forbade me from eating food for weeks at a time because any food at all could have triggered my severely inflamed colon to burst. They decided to give me intravenous food, parenteral nutrition. But I had tiny little veins and the radiologists had a heck of a time getting the “main line” (or pic line) into my arm. I remember one time it took 8 attempts to get the line in. Each attempt was so painful, near unbearable, I wanted to give up. My upper arms were lined with black and blue marks. And yet I made it through that horrific procedure several times.

Then there were the baby food years. My intestines were so sensitive, even after my colon was surgically removed, that I ate only the blandest of foods: rice, pasta, eggs, baby food, tofu, and a little fish (I did not know at the time that I could not tolerate gluten and soy!) for years. Vegetables, beans, lentils — all of those foods were way too fibrous for my sensitive gut. So I ate baby food veggies, maybe one jar a day. There were a few months in which I juiced carrots and beets (and now I can’t tolerate carrots or beets). My physicians encouraged me to drink Ensure, which is a protein drink. I drank hundreds of cans of Ensure and held my nose while it went down. The smell of Ensure now makes me feel nauseous!

There were so many challenges to living with Crohn’s colitis. Sometimes I didn’t make it to the bathroom in time. Sometimes my bowel movements sounded like explosions in public bathrooms, while my colleagues were also taking care of business. I had to explain to friends and colleagues why I couldn’t eat so many foods. I had to ask for special foods. I struggled to get a good night’s sleep and worked full days after tossing and turning in pain throughout the night. There was a year in which I did not sleep through the night on any of the 365 nights. There were years in which I meandered between depression and anxiety. Was it easy? No! Did those experiences change me? Absolutely!

More

Previous Older Entries Next Newer Entries

Follow

Get every new post delivered to your Inbox.

Join 190 other followers

%d bloggers like this: