Thursday, September 16, 2010

Doing a "Good Job" of Being Sick

A while back, the title of a book caught my attention: "Being Sick Well: Approach Illness With Dignity, Adopt a New Attitude, and Find Hope Through it All". Being the typical Type-A personality buried beneath limited energy (which means I never get anything done to the perfection I really want), I immediately thought, "Hey - being sick well? I'm game! If I've got to be sick... why not do it the right way?" I purchased the book, headed home at a snails pace, and armed with highlighters of every color, curled up in bed with my treasure-book full of answers. I was asleep before I opened the front cover, thoroughly exhausted from my simple outing.

Two years later, a new doctor, a diagnosis and new successful treatment, and a recent major downsize to a small condo had me unpacking boxes when I stumbled across this book, still unread. Well... sort of. I've read the first two introduction pages. Today. When I wasn't feeling well.  Then my body gave out and I fell asleep. See a pattern? I'm sure many of you can relate. There isn't enough energy left to do everything I want to do so doing a good job of being sick seems like a paradox.

I think this haunts all of us who are ill and who want to do well in life. How can we be sick "well"? Is there such a thing? How can we live a life that is abundantly more than we could have ever dreamed of - blessed beyond measure despite the daily, hourly, or minute-by-minute reminders of the illnesses that eat away at our resources of time, energy, emotions, and finances.

I have started this journey toward "wholeness" despite being broken physically by downsizing. My friends have all laughed at me because despite giving away a 28 foot moving truck full of "stuff", I didn't downsize enough. So I am still getting rid of stuff that I can no longer physically care for. I live in a condo that is less than 600 square feet, and though I initially fought the idea of letting go of things that I thought meant something to me emotionally, now that I've made this transition I am so thankful. Though I'm still unpacking, sorting, and tossing stuff out, it takes me less than an hour to clean my home including the floors and bathroom. In finally accepting the limitations and creating a new living environment, I am able to spend precious energy that would have otherwise been spent on a larger home on things that are far more important. For me - step one toward "being sick well" was admitting that living in and caring for a large home was no longer an option.

Another thing I've found successful was to stop fighting my body and start listening to it. Many of us were told "There is nothing wrong with you" or "It's all in your head" when we were on our journey toward getting a diagnosis. As a result, we tend to try to push ourselves through flare-ups rather than listen to the cues our bodies are giving us. This is something my Rheumatologist has been preaching to me- "Be kind to your body." It took months of my doctor preaching this to me before I stopped feeling guilty for resting when my body says "rest".

One of the most important things has been to stay connected with my girlfriends. I have girlfriends that I talk to on a daily basis and those friendships are my lifeline, especially when I am too sick to go out. They add joy to my days, laughter to my life, and sunshine to the darker days. They are gifts from God, and I encourage each of you out there to let your friends in and be authentic with them.

I am so far from being close to doing a "good job" of being sick... it's a work in progress. But I am determined to live my life to the fullest despite being placed in a body that is not what I want it to be. I think all of us who live with chronic illness want that... that's why events like Invisible Chronic Illness Awareness Week and groups like Rest Ministries and those found on Facebook and the blogosphere are so important. Each one can reach one - we can share what we've each learned and help one another along the way.

Monday, September 13, 2010

Recreating Your Life With Chronic IIlness

Most of us with a debilitating chronic illness, if asked, would admit that as we traveled along the journey of life, we never saw this train called “Limitations” coming and if we had, we certainly would moved heaven and earth to get out of the way. As children we dreamed of what our lives would hold and who we would be, encouraged by those who loved us to dream big and wide. But what do you do when the life you have so carefully been creating and carving out begins to fall apart around you because of your illness? What happens when you are no longer able to hold down a job five days a week, so you go to four, then three, and then even two becomes too much.

I was there four years ago and it was the scariest and loneliest time of my life. After twelve years of being sick, I could no longer manage many of the simplest tasks of daily living, which included holding down a steady job. Eventually, my disease, which was undiagnosed at the time, progressed to the point that I was unable to hold my arms above my head for five seconds at a time or walk more than a few hundred feet. However, mounting medical bills and household bills still had to be paid. After pushing my body to it’s limits—I finally conceded that I had no choice but to recreate my lifestyle and find a way to work from home.

While some may see this as a luxury, for many with chronic illness it is the only way we can survive. What and how recreating your lifestyle looks like will be dependant on many factors:

  • Your current field of work—is it suitable for a work-at-home environment?
  • Your relationship with your employer
  • The way your home is set up—do you have room to work from home
  • Your financial situation—do you have funds set back to start up a small business if needed?
  • Access to equipment—do you have a dependable computer/laptop, printer, phone, etc.?
  • What are your talents, gifts, and skills that you could use to start a small business from home that would work with your physical limitations?
Once you have carefully taken all these factors into consideration, you can begin putting a plan into place that works for you and your family. As you recreate your lifestyle, the challenges you live with on a daily basis won’t go away—but they will become more bearable. When your body is wracked with pain, you can work in your pajamas propped up in a cushiony bed. Instead of sitting at a desk in an office chair all day, you can create a “desk” space around a sofa that is more comfortable with a laptop and a laptop stand.

I started transitioning into this change in 2005, and made the permanent lifestyle change in 2007 when I opened my business, Hilton Head Nannies. Having a chronic illness and living with daily challenges, pain, and limitations certainly isn’t the life I signed up for when I dreamed about my future as a child long ago. However, I am a firm believer that there is a purpose in every serious/chronic illness and a story to be told as God’s plan unfolds. I am still learning to embrace God’s plan for my life. Each day as I turn to Him and ask for His help in recreating my lifestyle, I am finding joy, peace, and hope that break through the disease and pain and make me dream like a child again.

God bless you as you pray about what He has in store for you!

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. ` Jeremiah 29:11