What You Should Have in Your Chronic Illness Tackle Box

When I was growing up, my grandfather came every weekend to take us fishing during the summer months. We would travel many miles into the mountains where the Sierra’s end and the Cascade’s began. Meadows opened up to us as we crested the hills and we would find ourselves each year sharing this piece of heaven with the cattle that grazed the land. We met on our trips, bears that we were forced to leave our fish for and beautiful birds of prey that eagerly eyed our catch. I believe strongly in animal symbolism and would look forward to my visits from them. It is one of the fondest memories I have of growing up.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

I learned so much from these trips. Each year as I grew, I garnished something different from them. Some years, I would cling to my grandfather as we walked upstream as the rest of the family scattered downstream or through the meadow to a tributary. They would walk quietly, not speaking, and just as you thought you knew where they were, they would disappear into the willows. My southern grandpa would patiently show me how to bait, hook, find the right place where the fish would be, and how to be silent and unseen. It was here I learned to track. To be observant of animal prints and scat and the how long they had been there before us.  Hours we would walk in silence. When I was small he would carry me on his shoulders, later he would hold my hand. My brothers and I all became great fisherman and each rainbow trout we caught brought a smile to my handsome grandfather’s face. It was the warmest smile that we all worked hard to earn. In its moment, it meant all was right in our world.

As I became a teenager, I started to bring my book, a blanket and my bologna sandwich and would lie in the sun in the middle of the meadow between where the family dissipated. I needed the rest. My family demanded a lot of me and I took the silence where I could. I lived in those books while my grandfather and my mother and my baby brothers brought back our dinner. Once at home, I was responsible to clean the fish that was caught in my stead. It was a fair and just system.

I tell you this story because fishing is much like the life I live currently. The lessons I was afforded in the survival of our family have gone a long way in arming me with the ability to adapt to the challenges I face today. Just as the fishing line moves with the current, you must learn to predict where that might be. You also must learn to let go when your line gets tangled. You work to retrieve the hook but sometimes the roots of the trees that overhang the stream, get to keep it.

I am learning that to be chronically sick means that your friends don’t reach out to you as often. I am not sure if that is because I cannot be a friend back in the same capacity as I once could, or if they are tired of hearing about my latest maladies. Perhaps it is that I’m not in their world anymore. My existence is stagnant much of the time. I am not whining, as it may seem. It’s just an observation at this point.

It has been an adjustment for me similar to as if I had moved away. For those who know me, I have done this once or countless times. I have moved past sad and into this new reality. But in the journey, I have begun to arm myself with some new to me tools. I always believe that we live the life we were meant to live. These are ways to make the adjustment a peaceful and understandable transition.

You can find many a list of survival tools for the chronically ill all over the internet. They typically include heating pads, creams, and books to read. All of which are essential to adjusting my day. However, I like to think of survival tools as a tackle box. I have the ability to survive by learning to fish for myself. This box has hooks, bait, line, tackle and lures. Each day requires a different approach, just like fishing. And in this tackle box, you have everything you need to catch for whatever is needed for your current situation.

1. Rely on yourself: I am not referencing just the physical aspect, but fostering the things you would respect and want in another, in yourself. Recognize the attributes that make you a good friend, lover, mother, soul and heart. Be that for yourself. It sounds much easier to do than it is. We speak to ourselves much harsher than we would someone we love. This is not OK. You are worth all the love you give to others.

2. Stop expecting: People will not reach out to you. Their lives have moved in a different direction. It is the job of a “normal” person to be able to move in a linear way. Taking steps forward toward a goal. Ours is different. You will be able to find me most days here in my world. When I do something for my friends and I don’t get anything in return, it’s important to remember I have done so because I wanted to and not for the accolades or acknowledgement. Hurt feelings are a reflection of our own insecurities and do nothing but make you feel badly. You have the option to change this. You are more powerful than you realize.

3. Support others from your heart: I reach out to my friends when I feel they need a little extra support, but have learned that I back out when I need to. A little goes a long way. You don’t need to be someone’s only confidant, nor his or her only support. Tell them you love them. Make sure they know you are there. Be clear that to compromise you is not self-love. Remember that a small gesture can make all the difference. We have been given this amazing opportunity to live our genuine life. Take it. Do it.

4. Begin your day with meditation: Before you log on to what you may feel is your only connection to the world, take a few minutes to set an intention for the day and quiet your mind. We tend to wake up overwhelmed most days. The tasks may feel daunting and unobtainable. Breathing and connecting will help to put into perspective our agenda and perceptions.

5. Nourish yourself: With healthy foods, with help around your house, with movement – however that looks for you with music, with books, with feel-good films, new makeup, with people who love you, with whatever feeds your soul. Take the time to do this every day.

6. Family: It is your family that you can rely on. Who can you trust? Who is there to talk to at 3:15 in the morning when you cannot sleep? Who understands when you cannot do something that was planned a long time ago? Who knows that you don’t make commitments anymore because to back out last minute feels so much worse than not saying yes to an invitation? It is important to remember as well, that you will have family that isn’t blood relations. There are friends who are the family you choose for yourself. Be grateful they choose you too.

7. Take up space: Inhale and exhale. Now inhale and imagine your body filling up space around you. This is your space. Use it. Each inhale expands and your exhalation leaves you with the capacity to inhale again. Like a balloon, you have stretched the boundaries. Each time, it is more and more space you occupy. You can do this in your chair, while you rest between your day’s activities. You are deserving of all the space around you. Just because you are not doing what others are, you are still part of this beautiful world, in this place right now, taking and holding space for yourself and for those who wish to be a part of your world.

The big picture is exactly what is in front of you now. Yesterday is but a memory. Tomorrow isn’t here yet. So this little moment now? This is your everything.