Riding The Wave – Multiple Myeloma

“Do what you can, with what you have, where you are. – Theodore Roosevelt

“What do you do to keep yourself in good shape and spirits as a caregiver, and what advice would you offer other caregivers about caring for themselves?” – a Q&A question at a recent talk I gave and a great question!

As caregivers, we are often so consumed with getting someone we love the care and treatment they need, that we skip meals, lack sleep, skip showers, and give up on many of the personal things that are so much a part of who we are (or were). The chores around the house go by the wayside as we spend most of our time on the phone taking care of things and then handling the emergencies or discomfort of the one we are caring for. Things build up and back up, much like plumbing in our homes on a holiday with a house full of guests! All this can add to the stress we are already under.

Some of you who follow my blog know, that one of the most important things I felt I needed to do for Dave was to get his “head in the game!” Before I even knew what we would do or how it will all turn out, that was the one task I grabbed immediately as being paramount. I needed him to be strong for himself, for his parents, our children, and me as we wound our way through the maze of this thing called Multiple Myeloma.

What I didn’t realize, until someone asked the question, was that I too had put my “head in the game” – as a caregiver, a cheerleader, a coach, a researcher, a nurse, a friend, lover, wife, and mother of his children. I was ‘in the zone’ as they say. I didn’t really realize just how focused I had been through it all until it was over. It was only then that I fell down on the moving finish line at the end of a marathon run. Only then, did I realize just how in the zone I had been. Only then, did I start to recover, not even realizing prior, that I needed to, but I did. Just as surely as Dave did.

Yes, you need to take care of yourself physically, mentally and spiritually. Eat, sleep, take your vitamins, do things that uplift you, small things are to be fully enjoyed. Forget the amusement park thrill and go for the silly squirrels chasing each other around the tree trunk. Do things that keep your spirits up, take breaks from the research, from the phone, and yes, even your patient. Dress comfortably and easily, but do try to wash your hair and brush your teeth. It will make you feel better. Sleep when your patient sleeps, much like when you had babies first home from the hospital. That way when they wake up at odd hours you aren’t wiped out and lack the tremendous patience you need to get them through their difficult moments.

Be willing to experience anything.

For me, I picked up a hobby from my youth, knitting/crocheting. My grandmother had taught me when I was young and I had done it sporadically through my life in a very dilettante way.  I found a yarn boutique in Little Rock (where we treated) and slipped out one day with Dave in the capable hands of his nurses and bought some yarn and needles and began to create things. It was small, portable, and joyful. With my backpack full of my laptop, a book (or two) to read, my iPod and my knitting, I was prepared to sit there all day, everyday, for as long as it took for Dave to be well. It never mattered to me if we were there for 30 minutes or several hours. I had my bag of goodies to keep me occupied and comfortable. As a result, I am no longer a dilettante with my knitting anymore. I increased a great deal my understanding of this old fiber art and have continued, making even more new friends who engage in creative yarn arts.

We spent Christmas there, doing our first of two transplants. As a self employed artist for 20 years, I decided to make my holiday cards. It would have been infinitely easier to just buy them of course, but it wasn’t the point. I had something creative to do in the evenings when Dave was sleeping in the bark-a-lounger with the news on. It felt good to do something creative in an otherwise potentially miserable situation.

I had trouble getting out for walks and exercise. For me, I just didn’t feel comfortable leaving Dave. Sometimes at the hospital I would venture out for a walk while he was in the care of nurses and working. But for the most part, that was the hurdle I had difficulty resolving.

I made friends both at the facility where we treated as well as online at Social Cancer Website chat rooms and the like. Reach out to those who share in your journey with Myeloma and cancer in general. You will find kindred spirits there, where it is easier to share all your trials, tribulations and triumphs. Remember, while getting your head in the game or in the zone, be sure to include taking care of yourself as well. I can’t tell you what will work for you, but don’t dismiss the need to do it. Its vital that you stay in great shape in order to be the support you need to be. It can be an onerous burden at times and they need you, you can’t falter. No pressure… You can do it. But it really helps if you find ways and things that will help to sustain you.

Tags: postaweek2011, taking care of the caregiver