Mind Games: How I Cope During a Chronic Illness Relapse Using Brain Exercises

relapse

Around the holidays a couple of years ago, I got a bad cold which left me exhausted. Of course, I assumed that once I got better, my (limited) energy would return. It didn’t. I spent months in a state of brain fog and fatigue. By the mid spring, the relapse gradually began to ebb, although I still didn’t return to pre-viral levels for several more months.

The next holiday season, my pelvic pain increased substantially.  As I wait for more procedures, I worry about how I will cope with this ‘new normal’, which is interfering with my sleep and sometimes restricting my movement to the length of my heating pad cord!

I felt completely overwhelmed at the outset of my fatigue relapse last year.  First, there was the emotional reaction to a new situation: anxiety about whether it was here to stay, frustration that life was about to get more difficult, and grief at the prospect of losing what abilities I still had.  Secondly, there was the practical challenge of figuring out how I would cope, like what new treatment options to try or how to manage my daily routines and responsibilities.  Lastly, I faced the impact of a relapse on my relationships, such as the increased caregiver burden on my partner, and feeling less able to be present with family and friends.

My relapse brought me back to the beginning of my illness journey and how I coped after my diagnosis. I was able to use many of the lessons that had been learned the hard way the first time around. Now that I’m facing a similar situation, yet again, I wanted to write them out for myself –  I hope they may help someone else out there too. In essence, what I have learned is that I have the power of choice over what I focus my attention on each day. Through challenging negative patterns of thinking, being present, taking in the good, and pursuing an enjoyable hobby, I try to emphasize what enriches my life and let go of what doesn’t. Of course there are always bad days and I don’t believe any amount of positive thinking frees us from ever experiencing difficult times. I personally have found, however, that changing my worldview has dramatically lessened the amount of suffering I go through during relapses and has improved my quality of life.

1) Challenge Patterns of Negative Thinking: About a year after my diagnosis, I participated in a Cognitive Behavioural Therapy program for pain management. One of the core parts of the program was learning to identify negative thinking traps, or ‘cognitive distortions’.  These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves”.[i]

For example, if you think in “all or nothing” terms – a cognitive distortion – you might believe “if I can no longer pursue my career, I am a failure” (click here for a list of other cognitive distortions). A common belief among the participants in the group (me included) was: “Since I don’t work during the day, all I do is sit around the house wasting time”. The facilitator asked us to challenge this belief by making a list of all our daily activities. I was surprised to have a long list that included, for example, preparing my meals, going for a walk, reading a book, writing a blog post, doing my strengthening exercises, etc. I actually do quite a few things each day, and I rarely waste my time.

Now I try to identify when a negative thought is actually just a distortion and then challenge it with the reality of the given situation. I use a great app called ‘What’s up?‘ that lets you journal your thoughts and feelings, rate your mood and then connect them to any unhelpful negative thinking patterns (not an endorsement, just an honest review). It helps to get my head right instead of jumping to the worst-case scenario, which in turn helps me to feel better!

2) Be Present: One of the most powerful tools that has helped me to cope with my illness setbacks is practicing mindfulness, usually defined as “non-judgemental, present moment awareness”.

I attended a Mindfulness-Based Stress Reduction course at my pain clinic that introduced me to how cultivating presence could help me manage my pain.  Much of our anxiety comes from worrying about the future or reliving difficult moments from the past, rather than from anything going on directly in front of us at this moment in time.  Through mindfulness meditation, I have become better at recognizing when my mind as dwelling on the past or projecting into the future, and bringing my attention back to the present.

For example, I’m currently waiting on nerve block to treat my undiagnosed pelvic pain. I have a lot riding on whether this treatment will work – including being able to come off medications while my partner and I try to conceive. Just thinking about it makes me feel anxious and upset.  However, I won’t know anything until after the procedure, which is several weeks away.  Worrying about it now only makes me suffer more.  It’s better for my quality of life if I return my focus to the next best thing I can do for myself in this moment.

One reason I like the What’s up? app is because it includes several grounding exercises that ask you to identify things in your present moment environment, and bring you back to earth if you feel like you’re getting really caught up in a negative train of thought.  As my grandma used to say, worry about crossing that bridge when you get there!

Between spending time on your phone or binge-watching Netflix, it’s easy to become too distracted to enjoy the small moments in life. Meditation can help us relearn to stop and smell the roses. This is especially important for people living with chronic pain. Even during pain flares there are small moments of enjoyment if we stop and notice them — the taste of a good meal, sharing a hug, a sunny day, or a favorite hobby. Intentionally taking in the good moments by staying present while experiencing them is a powerful way to counterbalance the negative experience of feeling worsened symptoms during flareups or relapses.

[i] http://psychcentral.com/lib/15-common-cognitive-distortions/

Advertisements

Mind Games: How I Cope During a Chronic Illness Relapse (Part 2)

 

Coping with chronic illness and fibromyalgia relapse using mindfulness and other mental strategiesIn my last post, I wrote about my fatigue relapse last winter and my present pain progression this winter. My aim in writing these two posts is to share how I cope with illness setbacks, using ‘mind games’, in the hope they help someone else experiencing a relapse.

In essence, what I have learned is that I have the power of choice over what I focus my attention on each day. Through challenging negative patterns of thinking, being present, taking in the good, and pursuing an enjoyable hobby, I try to emphasize what enriches my life and let go of what doesn’t. Of course there are always bad days and I don’t believe any amount of positive thinking frees us from ever experiencing difficult times. I personally have found, however, that changing my worldview has dramatically lessened the amount of suffering I go through during relapses and has improved my quality of life. In Part I, I discussed 1) challenging negative patterns of thinking and 2) cultivating presence.

3) Take in the Good: Are you more likely to remember compliments or criticism?  If you’re like most people, you pick the latter.  That is because the human brain has a built in “negativity bias”, which allows us to learn from and protect ourselves from bad experiences.[i] Unfortunately, it can also make us anxious, irritable and depressed.  One way to rewire your brain so that it takes positive experiences into account, as well as negative, is to be intentional about what Rick Hanson calls “taking in the good”.[ii] This is akin to the old adage to “stop and smell the roses”. The first step is to be mindful of positive moments (to notice the roses) – the taste of a good meal, sharing a laugh with a coworker or hugging your partner. Practicing mindfulness meditation can help with this part, but you can also just start with the intention to take in the good today.  Secondly, pause for 20-30 seconds and focus your attention on enjoying the experience, instead of moving on to the next thing (focus on how pleasant the fragrance of the roses is). Finally, let the positive experience sink into you.  You can do this by visualizing a warm feeling spreading through your torso or by intellectually recognizing that by doing this exercise you’re literally rewiring your brain to tilt towards positive experiences.  If you do this several times a day, you can change the neural pathways in your brain so that positive experiences are ‘registered’ more in your overall outlook on the day.  This practice has been really helpful for my mental and emotional health while I deal of the challenges of chronic illness, especially during a relapse.

4) Pursue an Enjoyable Hobby: After my fatigue relapse, I withdrew from school because it was too demanding. With time on my hands, I decided I wanted to learn something creative. I looked for a hobby that wouldn’t hurt my painful upper back, and eventually settled on modern calligraphy. Last winter, calligraphy practice was often the one activity I did on a daily basis. Seeing my improvement as I wrote out the letters was a bright spot during that difficult period. This time around, I am learning how to digitize my calligraphy, with the hope of opening an Etsy shop sometime next year. Having a sense of personal accomplishment means so much to my mental wellbeing. Dr. Caudill notes that “Some patients feel so bad about their pain and their lack of a ‘productive life’ that they … feel they don’t deserve any pleasure” (2002, p. 83).[iii] Not only is it ok to pursue enjoyable activities, it’s actually critical for your mental health and stress management, which are important components of any treatment regimen. I can’t encourage fellow spoonies enough to find a hobby or creative outlet to focus on during a relapse or flare. Other activities I enjoy include online learning courses (free!) and writing/blogging. In order to get the most out of an enjoyable hobby, be present during these activites. Take in the good moments when you finish a project or learn a new skill. And focus on recognizing what you were able to do today, rather than what you weren’t. Negative thinking habits aren’t changed more easily than any other habit, but routinely practicing positive mental habits is a powerful way to improve your quality of life during a relapse.

[i] http://www.rickhanson.net/take-in-the-good/

[ii] http://www.rickhanson.net/take-in-the-good/

[iii] Margaret Caudill. (2002). Managing Pain Before it Manages You, NY:     Guilford Press.