Don't Wait Until...

I had an epiphany last week. I have been doing exactly what I tell my patients and readers not to do. I think  it has been a 'perfect storm' scenario that started it. We went to California for a week, across 3 time zones, which threw my internal clock off. I lost my job, daylight savings time started, and this headache returned.  For the past 5-6 weeks, I have had an almost constant headache, and greater fatigue than I usually have had. I have been able to continue to take care of most of my business, job hunting, writing this blog, etc, but my use of time has been less than efficient. I procrastinate, playing games on my phone, and looking things up on my computer. I am frustrated, unfocused. I am waiting until I feel better, until the fatigue goes away, until things get back to normal, and I can get on with my life.
WHAT??!!?? Wait a minute. This IS my life. This IS my normal (or a variant of it). If I am waiting to get back to that other normal, the one I used to have way back when, I am waiting in vain. I know this. I warn other people about this, and yet, I fell into it myself. Don't put off living your life, waiting until you feel better, or a particular event occurs. It may not occur, or even if it does, you may miss out on some wonderful opportunities while you were waiting. Live your life now, the best you can, with what you've got.
For the past 25 years, I have consistently had various types and levels of pain in various body parts. I describe it as being a member of the 'Pain of the Month' Club.I never know where I will hurt next, but when it shows up, it likes to stay for a month or two or ten. The fatigue I have only had for about ten years, at varying levels. The fact that this current pain is in my head compounds the cognitive problems that the fatigue causes, but it isn't anything new or unusual, just a variant.
Okay, so I realize that this is my life, no use waiting for it to get better (it might, or it might not, it might get worse). Now what? I need to get motivated, and to resist procrastinating. So easy to say, not so easy to do.
Having a routine and a schedule make the biggest difference. They both get me up and moving. One 'rule' I am instituting is using the morning time for me: exercise, grocery shopping, etc, and the afternoons for business: writing, job related pursuits, art, etc. I plan to not only have an ongoing to-do list, but pick out certain items from the list and what time I will do them. I will get up off of the couch more often, because sitting makes me sleepy, and sleepy plus fatigue makes me feel worse. I can set small goals for each day.
I will be am an active participant in my life. Now, if you will excuse me, I have some tasks to take care of.    

Redefining Success

Success means different things to different people, and also means different things in different situations. I know some people who are perfectionists, who seldom feel that they succeed in anything in life. Then there is the Special Olympics, where every participant is made to feel that they succeeded, no matter how they actually did in the games.One definition of success, according to the Merriam-Webster online dictionary is: a favorable or desired outcome.
I am involved with a Jewish women's group that gets together for a luncheon program once each month. We had a gathering today, which was longer and more involved than usual, a celebration of the Jewish month of Sh'vat, with a Tu B'Sh'vat Seder (celebrating the beginning of a new growing season in the land of Israel, a New Year for the Trees). I have a friend in the group who has had a very difficult time health-wise for several months. She is struggling to find her new balance point, the point at which she can participate in all the myriad aspects of her life, without repeatedly throwing herself into a tailspin.(Sound familiar to anyone?) We talked a little about this before the session started, and I told her that on occasion, I have found a couch to lay down on, near enough to hear what is going on, but where I can be more comfortable and relaxed.
This friend had someone prepare a plate of food for her, and she sat down at the table with the rest of us. She remained at the table for the entire lunch and program, and even participated in the discussion. For most people, this would seem like no big deal. For her, it was a big deal. Many of us, including myself, have been there, and know what it is like. Though most people wouldn't recognize it as such, this is success. To accomplish something, no matter how small, that pushes you beyond your easy comfort zone, that is success.
Success, to me, is doing the best I can in the situation. On days when I have alot of pain or fatigue, success has a much lower threshold than it does on days when I feel better. Success should not be a comparison between you and someone else, or even between you today and you 10 years ago. Especially if you are living with chronic pain or illness, you will never measure up if that is how you measure success. Instead, measure success by what is feasible today, in this situation, with these conditions. Success is a 'favorable or desired outcome', it does not need to be a perfect outcome.      

Grow Safely

I have been reading a book that contains a lot of wisdom: My Grandfather's Blessings, by Rachel Naomi Remen, MD. I mentioned this author in a blog about a month ago, and at that time I ordered several of her books. This is the first I have read. The subtitle of the book is Stories of Strength, Refuge and Belonging. Dr. Remen counsels people with cancer. Some of the stories are about patients' experiences, some are from teaching med students, and some are her own experiences, as a child with her grandfather (an Orthodox Jewish Rabbi), or coping with her own illness. (Yes, folks- she's one of us [people living with chronic illness]- she gets it.) The chapters are short, easy to read one, a few or many at a time. Each one weaves together a variety of elements to round out a point. I am thoroughly enjoying it, and have been marking some segments to use in blog posts.

I just read a chapter about a dream she had about a daffodil bulb planted in the ground, with a big rock directly above it. The rock is protecting the daffodil from growing in this, dangerous world. The daffodil says it needs to bloom, that is its reason for existence. Dr. Remen went to an acupuncturist for a pain in her back. During the treatment, the image of the daffodil and the rock came to mind, and she watched as the rock transformed into a greenhouse, and thus protected, the daffodil bloomed extraordinarily, made of light.  Instead of protecting the daffodil from blooming, it was now protected so it could bloom. Dr. Remen relates this story to a big decision she needed to make, and from it she found the courage to move forward with her decision.

I found another meaning that is smaller but closer to home for many of us. Being chronically ill and/or in pain, we place a rock over ourselves that keeps us from exposure to further pain or illness. It can be hard to determine how much we can safely do before we start to exacerbate our symptoms. We are instructed to stop before that point, but if we don't know where that point is, we may err on the side of caution, and stop too soon. In doing so, we may prevent ourselves from living our lives.

How can we transform our self-imposed life-hindering rocks into life-enhancing greenhouses?  That is up to each of us to determine.  Experiment with your limits. Allow yourself to step out of your comfort zone (literally) and live life. I'm not suggesting you ride the upside down roller coaster, but how about the carousel? You don't need to aim for a marathon, but try to increase (slowly, if need be) what you allow yourself to do.Take some chances. This is the only life you get (or so I believe). Live it. Many people with chronic pain and illness are depressed and disappointed by life.  Life isn't fair (that's true). But what restrictions are truly imposed by your illness and pain, and what restrictions are imposed by fear?  I wrote a post awhile back saying that sometimes it is worth it to go beyond your safe limits, knowing you may (will?) pay for it later.

In her next chapter, Dr. Remen discusses suffering. I will end this post with this thought: “In the depths of every wound we have survived is the strength we need to live. The wisdom our wounds can offer us is a place of refuge. Finding this is not for the faint of heart. But then, neither is life.”