I was honored that the original blog post was published here: https://booktrib.com/2018/11/meditation-the-opposite-of-the-rest-of-my-life/
Please share your questions or experience with meditation or mindful practices in the comments below.
Uncertainty is one of life's inevitabilities. And we all cope with it and accept it – more or less. But a chronic disease like MS can raise that level of uncertainty to a new level - to scary, unfamiliar territory. MS is especially unpredictable with a wide range of symptoms and rates of progression. My diagnosis left me reeling. I didn't know how to get on with my life with the added uncertainty of MS.
Soon after my diagnosis, I had a dream that I suddenly couldn't move – at all. When I tried to open my eyes, I couldn't see. When I tried to call for help, I couldn't speak. I woke up more terrified than relieved, realizing that the shadow of MS, a disease that could take away most of my ability to function, would never leave me. I could wake up paralyzed. The dream was far-fetched, but elements of it were true possibilities.
When first diagnosed, I felt great despair because I was pessimistic. Instead of uncertainty, I felt certain of a dismal future. I thought I had to abandon my dreams because I couldn't take on a new challenge. I couldn't switch jobs, or travel, or push myself to new limits.
Yet, over the years, I have proved myself wrong. I have had new MS symptoms and relapses, but I've recovered each time. I've traveled to five continents, run two marathons, and accepted leadership positions with new responsibilities. And I've formed a tense alliance with uncertainty. Some MS-related decline is likely, but it's not certain. If it happens, I'll still probably be OK. Because when there is uncertainty, there is hope.
In addition to a shift in attitude from despair to hope, here are some strategies for dealing with uncertainty:
1) Cultivate healthy habits that you can do every day to give you structure and some sense of control. For me, exercise and meditation are key ingredients for a good day.
2) Read fun "escape" books when you need a short break from reality. You can follow me on GoodReads suggestions: https://www.goodreads.com
3) A sense of humor is essential. Dave Bexfield's uplifting and inspiring website and blog epitomize how to do this well: http://www.activemsers.org. Despite significant disabilities from his MS, Dave continues to travel the world via wheelchair and stays active as a cyclist and adventurer. He finds humor in every inconvenience he experiences as a wheelchair-user and MS warrior, and then he shares his funny tales of woe with his readers.
4) Keep a journal. I write every day. Sometimes I look back at past entries, and it's encouraging to see some of the challenges I have overcome.
5) Talk about it. Uncertainty is stressful and frustrating. Share your feelings with a trusted friend or family member or a counselor. It's OK to feel rage and sadness and grief. Sometimes you just need to vent.
6) Plant a garden. I joined a community garden a few years ago. Planting my spring or fall garden is always an optimistic gesture, equal parts uncertainty and anticipation. I don't know what the conditions will be like to support the garden. In my first winter garden, the Brussel sprouts were a flop, but the kale was wonderfully out-of-control. I don't even know for sure that I'll be physically capable of harvesting my vegetables when they are ready each season, but I counterbalance that uncertainty with hope.
Please share your ideas for coping with uncertainty in the comments below. I'd love to hear from you.
I used to be addicted to Ambien. I couldn't sleep without it. I tried everything – all the recommendations I gave my patients to improve "sleep hygiene." I exercised every day. I went to bed at the same time every night. Nothing helped.
I've never had an easy time sleeping, but in the first few years after my 2009 MS diagnosis, I wondered if I would ever sleep normally again. I felt dizzy – my main MS symptom – all day, and I wanted so much to have a restful sleep at night, but I could not. I felt like Sleep was a beautiful room, beckoning to me, but an impenetrable door blocked my passage. My husband, next to me, would float right in, but I was left pounding at the door: "Please! Open up!"
Ambien was the only thing that seemed to work. I tried other medicines: Benadryl, melatonin, Chinese herbs. I went for acupuncture and restorative yoga classes. But every night that I tried to sleep without Ambien led to the same late-night internal conversation: Why can't I sleep?! Should I get up and take Ambien? No, I need to learn to sleep without it. What is wrong with me? Why am I addicted to this medicine? I'll have a horrible day tomorrow if I don't sleep. Maybe just half a pill. Tomorrow night I can try again.
Up to 10% of U.S. adults suffer from insomnia and report significant functional distress. Sleep problems in chronic disease are especially tricky to manage. A disease like MS can, itself, cause insomnia, and sometimes medications used to treat the disease can interfere with sleep. Anxiety and worry about the disease compound the problem. Medicines like Ambien have a role in the treatment of insomnia, but they have their own side effects and potential problems.
At some point, I realized Ambien was making my daytime dizziness worse, and I finally quit taking it. Generally, I'd rather be tired than dizzy. And gradually, my sleep improved without it.
Although sleep hygiene measures have fallen out of favor to some extent, I think they did help me:
- Go to bed and wake up at the same time, seven days a week.
- Avoid caffeine within eight hours of trying to sleep. (I quit caffeine almost completely when I realized it, too, seemed to worsen my dizziness).
- Exercise every day, but usually not within two hours of sleep.
- Use your bed for sleep (and sex, if you are in a relationship) only – avoid TV, video games, working on your phone or computer, eating, etc. while in bed.
- Avoid using alcohol to fall asleep.
- If you can't fall asleep after 15-20 minutes in bed, get out of bed and go to a different room where you should do a quiet activity until you start to feel tired; then try again. This last tip is the hardest, but it's the most critical!
More importantly for me was my discovery of mindfulness meditation about three and a half years ago. I completed an eight-week mindfulness-based stress reduction meditation class, led by Geeta Cowlagi here in Austin. I didn't expect meditation to have a dramatic impact on sleep, but it has almost cured my insomnia. It's also given me a tool to deal with sleep issues and anxiety when they occur. I now do a short meditation every night just before falling asleep. It's pretty great, because I usually DO fall asleep.
Cognitive behavioral therapy is another excellent option for treating insomnia – and it seems to have a better evidence base of success than sleep hygiene recommendations. Best of all, it's noninvasive and nonaddictive.
I don't believe in a one-size-fits-all approach to insomnia cures, but I do think getting restful and adequate sleep is important for all of us. Please add your tips and recommendations below in the Comments section. I hope this is helpful!