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Finding a New Normal: Living Your Best Life with Chronic Illness

Finding a New Normal: Living Your Best Life with Chronic Illness

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Finding a New Normal: Living Your Best Life with Chronic Illness

183 pages
2 hours
Feb 5, 2020


From Sue Jackson, the author of the popular and award-winning blog Live with ME/CFS, comes a book to help you live your best life with chronic illness. Based on Sue's almost 20 years living with chronic illnesses in her own family, writing her blog, writing articles on chronic illness, and leading multiple support groups, she provides support and practical advice you can use.

Whether you are in the early days of living with chronic illness or have been at it for years (or decades), there are always challenges in living a life framed by limitations and restrictions, where isolation is a common issue. This guide provides inspiration, advice on emotional coping, and guidance on living your best life with chronic illness from someone who's been there. Though it seems impossible at first, your life will eventually settle into a new normal, and while that life may be different than the one you had planned, it can still be a vibrant, fulfilling life based on strong relationships, a healthy emotional state, and finding joy in every day. The emphasis in this book is on LIVING your life, not just enduring it.

Feb 5, 2020

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Finding a New Normal - Suzan Jackson

Emotional Coping

Riding the Chronic Illness Rollercoaster

The song Helter Skelter (originally by The Beatles) often goes through my mind when I shift from feeling fine one day to very sick the next. It resonates with my sense of climbing up only to find myself sliding back down again. For those of us with chronic illness, life is often like a rollercoaster. Not everyone experiences the same physical ups and downs; some people feel about the same every day. All of us with chronic illness, however, live with an emotional rollercoaster.

Elizabeth Kübler-Ross, MD, famously identified five stages of grief: denial, anger, bargaining, depression, and acceptance. Many people whose lives are changed by chronic illness go through a similar grieving process. What most folks don’t realize is that these stages don’t occur linearly and that aspects you think you’re done with (like anger or depression) can recur over time.

I have found this to be very true in my own life. I certainly experienced all of those stages of grief at the beginning of my illness and even got stuck in depression for a while. For the most part, I feel that I am fully in acceptance mode now, almost two decades into chronic illness. However, once in a while, those other emotions still appear and surprise me.

I am generally a very happy, optimistic person. That’s just my natural temperament, and I am usually content with my life, even with chronic illness. I’ve made peace with my new normal and accept my limitations; I’ve learned to find joy and contentment within my restricted life. Every once in a while, though, even after so many years, I find myself back on the emotional rollercoaster. Despair will hit me with the force of a tidal wave. I’ll suddenly feel depressed, abandoned, and like a failure. I’ll cry and grieve over all the things I can no longer do. This dark state of mind might last for a day or two, and then I gradually come back to my normal happy self.

I’ve learned over the years that these sudden storms of despair often accompany a physical worsening of symptoms or a crash (relapse). That tells me that some emotional lows are tied to my brain’s biochemistry. Understanding this makes it a bit easier to deal with, though it is hard to be logical in the midst of that darkness.

So, what helps when I hit bottom?

Following are some coping mechanisms I’ve developed to help steady and lift my spirits when despair drags me down.

Go with the Emotional Flow

The first key is to recognize that what you are feeling is normal and will eventually pass. Of course, this is easier said than done. When you are in the midst of these very real and powerful emotions, reminding yourself that you are at the mercy of changing biochemicals can be a challenge. I’ve found that giving myself permission to feel what I’m feeling while reminding myself that it is transient can help immensely. Think of it as riding the wave—letting the emotional surge flow, trusting it will pass.

Focus on What You Are Grateful For

One way to let in some lightness when the dark clouds come rolling in is to remind yourself that things aren’t as black as they seem, that you still have some positive things in your life—family, friends, good books, birds singing outside your window. I find that the worse I feel, the more I gain from forcing myself to think of something I am grateful for, so I try to make a practice of it. For example, I keep a Joy Journal, setting aside time each day to reflect on and to write down the little things that brought me happiness. (See the chapter Finding Joy in Every Day.) I also started a daily #GratefulToday post on Twitter and Facebook, which not only helped to strengthen my attitude of gratitude but also provided a place for others in my social-media circle to share their gratitudes.

Reach Out to Others

Chronic illnesses are isolating anyway and even more so when you are feeling emotionally low. If you have understanding friends or family, tell them you are feeling down. Just sharing those feelings with a loved one can help. (Make sure it is someone who can be empathetic and not make things worse.) You can also share your feelings online with others who you know will understand, in discussion groups or Facebook groups for your illness. For me, that often means writing a blog post or posting in a support group on Facebook, and I am always comforted by the outpouring of support and understanding when I do admit to feeling down.

Take Care of Yourself

Focus on your own needs and do things that you enjoy: read a good book, watch a favorite TV show or movie (a funny one is even better!), take a nap, listen to an audiobook, spend some time outdoors. Do whatever brings you comfort.

Be Kind to Yourself

If you are going through a bad period emotionally (or physically), don’t try to be productive and get things done or push yourself in any way. Indulge in comforting rituals, like a favorite herbal tea, a piece of dark chocolate, staying in bed. Don’t berate yourself for feeling down. Let others take care of you.

Help Others

It may sound counter-intuitive, but helping other people can be a great way to help yourself. It feels good to be of use or to know that you helped someone. Reach out through your social media networks, chronic illness groups, or to close friends or family. Helping others has been one of the biggest unforeseen benefits of our illnesses in our family.

If none of these kinds of things work or you are stuck in a serious depression that lasts more than a few days, seek professional help. Start with a local referral service (see whether your or your spouse’s company offers an employee assistance program, or EAP) or search online (one website to try is www.findapsychologist.com). Look for a therapist who has experience with chronic illness; call the office and ask that question before you book an appointment. If you are too sick to leave the house or can’t find anyone locally, look online; there are therapists specializing in chronic illness who will work with you via phone or video call. Two apps to try are Talkspace and Betterhelp.

In my first few years of chronic illness, I struggled to adjust to my new life of limitations. When my two sons also got sick, I sunk even deeper into despair. I found a wonderful local psychologist (through my husband’s workplace referral service) who had a grown son with ME/CFS. She understood what I was going through and helped me immensely.

Most of all, I have learned to focus on the here and now. Considering a lifetime with this illness is overwhelming. Thinking about all that I want to do with my life in light of my current restrictions can be depressing. It’s better to focus on small goals, on getting through each day, even each hour, and taking care of myself now. Those black feelings will come sometimes, but I know they will also pass.

One Day at a Time

You can see only as far as your headlights, but you can make the whole trip that way.

— E.L. Doctorow (The Paris Review)

This is one of my favorite quotes, and I’ve turned to it over and over again in my long journey with chronic illness. I recently shared it with my son, and he immediately copied it into his phone. Doctorow was referring to the process of writing a novel, but I think it applies perfectly to life with chronic illness. My family and I learned this lesson early on: take things one day at a time.

About two years into my own illness, our two sons also developed ME/CFS. Those were dark days for us, especially when all three of us were experiencing bad flare-ups at the same time and my husband was left to care for all of us. In addition to the disabling effects of the illnesses themselves, we were also dealing with school administrators and teachers—many of whom were surprisingly unsupportive—to get accommodations for our sons, who were frequently absent from school. During that period, they routinely missed 30 to 70 days of school a year or sometimes were unable to attend full days at all. Those battles added a tremendous amount of stress to our already frayed existence.

We soon learned that it was impossible to look forward in time; our future was filled with too much uncertainty. We couldn’t plan for the next school year or even the next week because we never knew when our bodies would just say no. We discovered that we could reduce our stress by living in the moment. Some days, even one day at a time was too much. Then, we would focus on one hour or even one moment at a time, taking care of our immediate needs and not worrying (too much) about what was ahead.

We were finally able to hammer out an agreement (a 504 plan) with my older son’s middle school that used this philosophy: we took each day as it came. All electives were waived, and he took only three classes in school when he was able to attend (which turned out to be about 65 percent of the time). He took his other two classes with a homebound (in our home) tutor—a warm, kind woman with whom we are still close. Each day, I drove him to whatever classes he felt he could manage, often bringing him home for a nap in between. (Yes, that was often difficult for me, driving back and forth to the school four to six times a day when I wasn’t feeling well myself!)

We tried to be more flexible with our own plans, too. We took advantage of good days, doing something fun (within our limits) at the spur of the moment, and we learned to just go with the flow when we had to cancel plans at the last minute.

I discovered that the concepts of Buddhism are very helpful in this respect, as they teach that life is full of unlimited joys and sorrows and that change is constant. Toni Bernhard, another ME/CFS patient and a friend, wrote a wonderful book called How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, which applies these tenets to life with a chronic illness. (Toni has since published two more books on the topic.) The Buddhist approach embraces the one-day-at-a-time, go-with-the-flow mentality that has been beneficial to our family.

One side benefit of living life this way is that it helps you to recognize and appreciate life’s joys more. When you set aside worry, anxiety, and things outside of your control to live in the moment, you automatically slow down and start to notice the good things in life. For someone who is very ill, perhaps even housebound or bedridden, there is still plenty of joy to be found: in a favorite book, an uplifting movie, a child’s laugh, or the changing view from your window.

One winter, as was typical then, my sons and I were all were severely crashed for months. It was a long, difficult period, but we did our best. The boys and I watched a lot of movies and TV, took naps, and spent many days with all three of us lying in the family room. (We ran out of couches!) When we started to feel a bit better and were suffering from cabin fever, we decided one Saturday morning to head to the beach, about two hours away. The four of us just packed overnight bags and got into the car. It was exhilarating to be out of the house and to see the ocean (even if it was February). We didn’t do a lot of vacation-type stuff from a healthy person’s perspective. We just ate some meals out, sat on a bench looking at the ocean, watched TV and played cards in our hotel room, and sat

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