I always appreciate it when bloggers with CFS/ME, fibromyalgia, or other chronic illnesses offer their insights and strategies for living fully—we have so much to learn from one another. I'd like to return the favor and offer some strategies that work for me. They're not suggestions for medications or supplements or life-style changes or therapies—instead, they're some of the things that help me accept illness as part of my life while not allowing it to rule my life. One of my friends has kindly made an addition to the list, and I hope others will feel free to suggest their own words of wisdom as well. (Note: This list first appeared in a somewhat more irritated form as "Qwitcherbellyakin" in July, 2010.)
1. Prioritize. Illness does offer us gifts, if we just have the good sense to recognize them. One of the most powerful gifts is also one of the nastiest afflictions—the incapacity to do everything (or almost anything) we used to do. The good side of that is that we really have to figure out what matters to us at the very deepest levels. What are your core values? What principles do you hold most dear? Not what do you enjoy doing the most, but what do you care about the most? Healthy people can engage in all sorts of activities whether they express their values or not. People with chronic illnesses do not have that luxury. We cannot expend energy on things that don't matter. So figure out what you value—what your mission is, what your vision is. Find the activities that you can do that further your values, and don't waste precious energy on the things that don't. You may be surprised to discover that you can live out your values no matter what your current abilities.
2. Learn the difference between complaining and acknowledging—facing facts honestly and objectively. Don't complain. It doesn't help, and it lands you endlessly in a victim's role. Acknowledge, yes. When your parents ask how you're doing, chances are they actually want to know. So tell them—two or three sentences max ought to do it—and then move on. Mourn your losses, yes. They're real, and they hurt, and they matter. Move on. With the same amount of energy that it takes to complain, you could also tell your sister that you love her, or ask about a dear friend's day. If you give complaining priority, what does that say about what you value? Do you really think it's more important to bemoan your fate than it is to share love and joy and life with those around you?
3. Practice gratitude. If you are reading this online, you already have blessings of awe-inspiring magnitude—an education (twelve years of which probably cost you nothing), electricity, running water, a temperature controlled environment, a refrigerator, foods from all over the planet, internet access to a world of ideas. We take all those things for granted, but just imagine trying to live with chronic illness without them, even for a day. And that list of wonders doesn't even include the most wonderful things: supportive, loving family and friends. Focusing on your blessings—and you have them, if you will just look—will help shift your awareness from the victim's endless litany of "poor me, poor me, poor me" back to the things that you really do care about, and make you alert to other good things as they happen. Gratitude is the first step toward joy.
4. Live your enjoyments to the hilt. Many of the things you enjoy now may not be your first choice, and they may be smaller than they used to be—an hour on the patio rather than a day in the mountains—but it's silly not to enjoy them fully because of that. Learn to savor every pleasure, no matter how small.
5. Do something for someone else. Anything. We are meant to be givers, and life can seem pointless when we feel that we have nothing to offer. Believe that you matter, despite how much of your life you spend lying in bed, or in soul-numbing isolation, and give something of what you have inside you away. It can be as simple as a smile for someone who needs it. Giving helps. Immensely.
6. Melt down occasionally with a trusted friend. We all lose our perspective now and then, and we all lose our way forward. Be truthful about your fears and frustrations and griefs. Be honest. But don't get bogged down in complaints, and let your friend help you find your footing again. In those circumstances, he or she is probably happy to be supportive.
7. If at all possible, put your bed and sofa where you can look out at trees or some other greenery. It makes a surprisingly huge difference. (Studies have shown that people in hospitals recover from surgery
faster, use less pain medication, and are better patients when they have
trees to look at.) We deal with enough pain and unpleasantness. Looking outside at something beautiful and alive can substitute pleasure for pain, even if it's only a little bit. It also reminds us that life does continue, and that we are a part of it.
8. Also if at all possible, spend time outside. As one of my friends likes to say, "Sitting inside is just sitting. Sitting outside is an activity." If you have a porch or patio or balcony, use it on every nice day that you can. You'll be part of life in ways that you never can be inside a house. You can observe the changing seasons in intimate detail, follow the lives of bumblebees or hummingbirds or toads, watch flowers go from bud to bloom to seed. Because sitting outside is an activity, no matter how gentle, someone with CFS may not always be able to manage it. But if you're able to read a book or watch TV, take your cup of tea out onto the patio for a while instead, and soak up some of the good kind of reality for a while. Adirondack chairs are wonderful things.
9. Spend time relaxing. For those of us who lie on sofas a lot, that may seem like a stupid thing to say, but I find that I can be lying down and still not be relaxed. When I was healthy and worked and played hard, it was easy to relax, because the difference between activity and rest was so clear. But reading (for example) as a nice, calm way to end a busy day is a much different thing than reading as a way to mark time until the day is over and you can officially go to bed. The one is relaxing, the other—not so much. It may only be light activity, but it's not unwinding. Make a point of doing whatever helps you unwind every day. Your body and spirit are stressed by illness. Give them a breather.
10. Be gentle with your friends and acquaintances. (Possibly even with your medical doctors, though that may be stretching a point.) They will fail you, believe me, if they haven't already. At some point, someone you trusted will say, "Well, we all feel tired sometimes. I'm tired right now." (And then you'll watch them walk up five flights of stairs without stopping, and still be functional at the top.) They'll desert you when you need them, they'll be ready for you to be over this because they are, they'll say all the wrong things. You know what? I've failed my friends, too. There are times when I have just refused to be who they needed me to be, for no good reason. There are times when I've said thoughtless things to an acquaintance because I didn't have the imagination or experience to understand his or her situation. We are all human. If a "friend" is out and out cruel, of course, abandon that friendship, and the sooner the better. If someone takes energy you can't afford to give, then reset the boundaries. But if they're doing their best under the circumstances and just don't get it... Be gentle. Be willing to forgive and forget. The world of the chronically ill is small enough—don't make it smaller by excluding people you care about just because they have human limitations.
11. Which leads me to this bonus tip, which sums up most of the others: Always remember—even your illness is not all about you.
12. (via Ronit Seter): Connect. Talk. Hug. Touch. If you are in a relationship, always keep in mind that touch is great for healing. Work on your relationship, so that touch is practically always available. If you are not, don't hesitate to (gently) hug other family members. Given an explanation, they are likely to be more than happy to hug you a lot, to touch you often. A sensitive friend might get into it, too (or, easier, people from non-Western cultures, who are used to a smaller personal space than accustomed in the British or American cultures). Other ways to get in touch, literally, are massage (if you can afford one occasionally) and a peer-counseling method known as RC (or Re-evaluation Counseling; google RC), where people meet in groups and then pair up for short sessions of "discharge" of emotional "baggage," thus supporting each other emotionally while holding hands in the process. Holding hands while talking is always a good idea. From experience, this can sometimes be better than therapy. Isolation is bad; any connection is healing: virtual connection; phone talks, real meetings, while keeping an eye contact; and then the physical touch. There are other ways for lively contacts, obviously (like having a pet)—just make sure you get in touch.