I spend time in person and online with people who have serious, ongoing illnesses who I greatly admire. From their attitudes and experiences, and my own struggles, a few survival techniques have become evident. Putting on a fight face, becoming a researcher, focusing on one moment at a time, and having a strong faith life seem to be some commonalities. I invite any readers to comment with their coping techniques and means of gaining ground. The more we connect and share, the less isolated and scared we will feel. There is power in information and connecting.
“When I get better….” I used to catch myself starting with this phrase a couple years ago. Too sick to work fulltime, too weak to go to the gym, too much brain fog to visit, too many medical appointments to organize, too many pain attacks to attempt past hobbies, too little money, too little energy…. I let the extremes of the illness and stressors cloud my judgement. I kept thinking the elusive “someday” would come soon and with it 100% energy and wellness. I would not do anything but take pills and inject IVs while saying, “When I get better I am going to hike through Scotland. When I get better I am going to run a 5km race. When I get better I am going to teach fulltime. When I get better I will rejoin the band. When I get better I will get my Masters.”
Caught in the trap of “When I get better” can lead to very unpleasant days. Thankfully, early on in my illness I started watching Joyce Meyer. The morning show title was perfect, and absolutely needed, a message in itself: “Enjoying Everyday Life.” Hmmmmm…. can I enjoy this painful, exhausting, everyday life? Is there joy and creativity and inspiration in the average day? With a change in perspective and attitude my everyday does run over with joy. Yes, I can enjoy everyday living. No more “When I get better…” Instead of dwelling on all that is lost and all I am incapable of I find new insight, new hobbies, and even new appreciation for my surroundings. Here are four steps that led me to abundant living and enjoying my everyday life.
If you have NOT been touched by a chronic illness, please take a moment to reflect on all that is going on around you. I have only been “out of the loop” for a few years; my tour of duty is minimal compared to most with this disease, but it did give me a taste of isolation and how inaccessible the world still remains for the disabled. At any moment one of us is next to you in a store, restaurant, or clinic. We are tired, sore, and likely panicking. Perhaps we are standing in a long line-up, reeling from POTs and deciding whether passing out is the best option or to simply go home and try again the next day. Everything feels like an assault yet we appear “normal.”
A couple months ago I discussed my “big” goal for 2017: to stop worrying. I began by contemplating why I worry and react in fear, then tested out stress management techniques. I wrote a blog post about what works for me under Coping, called “Stop Worrying.” For accountability sake, here is a follow-up:
Like every path we take, there are ups and downs. It is easy to walk in peace when there is no problem looming on the horizon. Life is full of struggle and surprises. My techniques were put to the test shortly after posting them. I became pregnant! Yes, a blessing. Yes, a joyous time. When Lyme disease is involved, a time of concern as well. This disease is congenital. Could I watch another human suffer the way others with this horrible disease have? What were we going to do?!?!?!?! Worry, worry, worry. Sleepless nights. Tossing and turning. Fearing for little life growing inside me.
Why was I such a hypocrite? I just wrote a blog post on how to not worry. So I returned to it, followed the steps, and voila, sleeping, praying, smiling, and peace. Not worrying is a goal and it is realistic that I slip a bit. The point is I got back up and hammered that mountain back into a little mole hill.
Conjuring fantastical worlds and grand adventures was how my brother and I spent many summer afternoons. To escape the droughts of the 1980s and a rather isolated existence on the prairies, our imaginations took us to a different place each day. The Caragana hedge became a dense jungle where we fought off a patrol of Viet Cong (Derek and I were obsessed with Vietnam War vet, Magnum PI). The yellow bean pods that hung from the branches became hand grenades, easily plucked and thrown at the enemy. Another day we crawled through a ditch, or ran over crunching dried, golden clumps of prairie grass, kicking up fine dirt as we escaped lions who stalked us on make-believe safaris. Some summer afternoons we fished with our great uncle and great grandmother at the pond, a lone body of water near our farmyard. Of course, the small pond became an ocean and we, deep sea fishers. Though far from a Norman Rockwell painting, a typical childhood in the 1980s country life was idyllic in some ways. Slowly this painting of imagination and family gatherings and youthful adventure became sullied, darkened by the unknown. Long-living, German, Protestant hardiness coursed through our veins. What was also coursing through our veins was something “new” and unseen and much more dangerous than the lions, human enemies, and sharks of our imaginations. This unseen guest was slowly attacking our bodies and minds, stripping us of our hardy genetics and ability to survive.