Handling Health Changes

Answer 1

I've been living with Chronic Fatigue Syndrome (also known as CFS, CFIDS, ME) and fibromyalgia most of my adult life. There was a time when I would have said I was fighting it, or struggling with it, or suffering from it. These days, I look at it differently. I have by no means given up on the idea of partial or full recovery. But I am committed to living here, in the now, and living darn well, to boot. Here are some of my guiding principles for living joyfully with disability or even a scary diagnosis:

1. Your physical condition does not define who you are. As all-consuming as dealing with physical limitations can be, you are more than the things you can or can't do. You are your ability to give and receive love. You are the unique sculpture that is your soul. You are your interests, your passions, and your distinctive point of view. You are also not your societal roles, your bank account, or your stuff. You are simply, beautifully, miraculously you, the only you there will ever be for all time. It really is enough.
2. Any illness waxes and wanes. When we have good days, we can scarcely imagine what it was like to be so sick. Unfortunately, it tends to work in reverse, toowhen we have bad days, we can't imagine feeling otherwise. Do yourself a favor. On a good day, write a letter to your future self, the one who's having a bad day. Describe in rich detail what a good day feels like. Remind yourself that good daysor at least not-so-crappy daysdo come back around. Print it out and tape it or post it somewhere where you can easily find it, no matter how sick or stressed you may feel.
3. There is really nothing in the world that is universally good or bad. Even the best thing in the world has a downside or two. And even the most terrible tragedy imaginable can contain a gift within it. On a good or not-so-crappy day, make a list of the good things that have come out of your challenges. I guarantee there will be more than one. Warning: on a bad day, this list may make you want to pound your head against the wall. It's okay. It doesn't make it any less true.
4. Give people the benefit of the doubt. Operate from the assumption that they are doing the best they can with whatever they have to work with at the time. That guy at the mall who told you he wishes HE could ride the mobility scooter cause his feet hurt? He's just trying to connect with youhey, at least he didn't pretend you weren't there. And about those people who pretend you're not there? They actually think they're helping you by not making you feel self-conscious. Finally, take it easy on the people who call you brave. You are brave. And, probably, they would be too, if they were in your circumstances. They just don't know it. They believe they're telling you something uplifting. Let them.
5. Listen to and honor your body's wisdom. It knows what you are capable of on any given dayand that has nothing to do with what's on your appointment calendar, or on your to-do list, or with anybody's expectations of what you "should" do (that includes your expectations, too). Your brain is smart enough to come up with all kinds of justifications for plunging ahead ("I'll just clean a little bit," "Everyone will be so disappointed if I don't show up," "No one can do this except me," "It's not so badI just have a small migraine.") Don't fall for it. Be still, be quiet, and listen very carefully to what your body has to say. You don't have to like itbut your life will be a lot easier if you stay within your energy boundaries.
6. Don't give upbut do consider giving in. Crucial distinction here. Giving up is abandoning all hope that anything will ever be any different than it is in the current moment. Giving in, however, is going with the flow. What would a bad day be like if you stopped fighting it and hating it, accepted it for what it is, and allowed things to unfold organically from there? Then pain is simply painnot a life sentence. Energy depletion is simply a cue to rest. A downturn is what it isnot a predictor of what is to come. Allow yourself to simply be, without expectation, without judgment, without fear.
7. Change your focus. If things feel scary and/or overwhelming, tighten your focus and narrow it down, smaller and smaller, until you're at a scale you can handle. On a bad day, it's easy to let your mind go spiraling into what-if scenarios and doomsday predictions. But if you can focus on what is okay in each individual momentthe softness of your sheets, the warmth of the sunshine through the window, the tiny bit if ease that comes from taking a deliberate, slow breathyou then ARE okay. One moment at the time. Conversely, zooming out and looking at a bigger picture, outside yourself and your challenges, can be helpful, too. When I'm feeling awful, sometimes it helps to coach a client, play a game with my son, take whatever step I feel capable of to make a difference in the world. Play with changing your focus, back and forth. What feels better?
8. Stay connected to the world in whatever way you can. When I was bedridden, technology was my lifeline, my means of connecting to the world. I kept in touch with friend, family, and even carried on with my coaching practice through Skype, email, Twitter, Facebook, and the phone. Frequently the people to whom I was talking had no idea I was flat on my back in bed. Illness and pain are isolating enough without you pulling up the drawbridge and hunkering down. Reach out in as many ways as you can imagine.
9. Ask for what you need. No onenot even your closest family and friendsis a mind reader. Sitting and seething because your spouse "ought" to know by now that you need a fresh glass of water every hour and not saying anything is as insane as going into a restaurant and expecting your dinner to magically appear without ordering. Note that asking for something doesn't mean you'll always get it. But not asking is pretty much a guarantee that you won't.
10. Be gentle, patient, even tender with yourself. You know how. But it's funny that what comes easily with otherspreparing a nourishing meal for them, or being patient with listening to their problems, or giving them time to restcan be so hard to do for oneself. Ongoing pain and illness can lead to self-neglect and even self-loathing. Ask yourself: how would I treat a dear friend who was struggling? Guess what? That dear friend is you.