Connected Carole

Connected Carole - 2014

Who Is Connected Carole?

I am a lady who has lived a long and happy life. I love to laugh, read, study, and create pretty things. I like to know what's going on in the world. I would travel if I could. I am a child of God. I am a wife, mother, grandmother. I do not define myself by difficulties.

Am I disabled? No: I can still walk, see, hear. Am I "able-bodied"? No: my activities are very limited. How about "partly disabled" or a "tweener"? These questions troubled me until I found the term "invisibly disabled". Wow! That's it! My disabilities aren't easily noticed, but they are very real.

Carole's Qualifications

Over forty-five years of living with invisible disabilities entitles me to write knowledgeably about these subjects. I have experienced failures, yet even more successes. There have been good times and tough times. Some people have helped; some haven't. Many medical personnel have been super-helpful while others have been disastrous. Our sons have grown to be successful men in their careers and with their families. My husband has stayed with me throughout it all, enabling me to overcome the challenges. Most of all, God has comforted and sustained me.

Carole's Connections

My foundational connection is to God through His Son Jesus. Without Him, I could not have survived the last 45+ years. He has blessed me with a loving family and special friends. He has enabled me to keep on keeping on through difficult challenges, living a successful life in spite of them.

Joe - Carole couldn't survive this life without him

Joe, my husband of nearly 60 years, is my most significant connection. He has provided the emotional, physical, and practical support necessary for me to carry on. He taught me to laugh. For our first twelve years of marriage, we fully participated in life. We started our family; Joe was in the military; he graduated from college and earned his Master's. Then came the challenges: injuries, doctors, questions, unending difficulties. Despite this, Joe has remained steadfast in his love and support for me. He believes in me even when I sometimes don't believe in myself. He is an incredible man.

We have two sons, now grown and with beautiful families of their own. As boys and teens, they carried extra responsibilities because of me. That was a downer for me, but maybe it contributed to their becoming compassionate men. Through it all, they have added many delights to my life.

Our sons at the park

Through the years, some wonderful women have been more-than-helpful in practical aid and emotional support; they have cooked, cleaned, and helped in other ways. Currently, many of my friendships and support come through social media relationships; these friends are always ready to listen and to pray when needed. Women in our church are friends who encourage me. One woman and her family volunteer to clean for us every two weeks.

The Challenges for Carole

I have two primary neuromuscular conditions that fight each other causing even more problems, complicated further by an autoimmune disease. Add in aging issues and my life becomes quite challenging.

Prior to 1978, I was completely able to do whatever I chose. Then began the downward progression when I sustained a work-related, severe, disabling, back muscle injury. The cause being neurological, strengthening exercises were not an answer. The next forty years have seen ups-and-downs in my strength with a gradual downward spiral.

I deal daily with weakness, pain, spasms, and especially fatigability (inability to sustain endurance). My weakened muscles fatigue quickly, with rest being the only antidote. Disuse further weakens muscles. So, my daily life is a constant tension between doing too much and not doing enough, between resting to restore strength and activity to keep my existing abilities. Getting the tension right means being able to participate in life!

If you desire more specific details, please use the Contact form. Or read our book, Sunbreaks in Unending Storms.

What Carole’s Life Looks Like

My challenges significantly limit my activities. My normal - although I'm not sure there is any normal - daily routine consists of alternating activity and rest. When I'm up and about, I try to rotate activities to use various muscles. My resting time likely differs from what is normally considered rest: I use a special recliner to relax the muscles, but I don't sleep. Activities there include reading, using my laptop (being careful about arm use), talking with whomever's around, playing games, and doing craft projects (again, being careful). I usually rest 1-2 hours, and then get up to do "up-time" activities: PC work, laundry (with help), some meals and dishes, occasional light housework. So, how does all that other daily work and housecleaning get done? Joe! He's one special man!

Too many days are spent traveling to medical appointments. At least, then, we get to do some shopping and eating out. However, those days cut down on the time for activities of our choice. Sunday mornings, we attend worship services at our church, fatigability again limiting our participation so that we aren't able to attend Bible Study. Conferences, meetings, visiting friends are all difficult because two hours sitting is my limit before exhaustion begins. And two hours passes quickly! All this contributes to social isolation; hence, the computer expands my world.

Aging has complicated my life the last few years. The limitations, pain, and fatigability mentioned above have all increased.

FUN WITH THE RECLINER

For specifics about Connected Carole's life, see Carole's Daily Life.