Connected Carole’s Story
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.
Almost forty 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.
My foundational connection is to God through His Son Jesus. Without Him, I could not have survived the last 37 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, my husband of 49 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 Masters. 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.
Through the years, some wonderful women have been more-than-helpful in practical aid and emotional support. Currently, most of my friendships and support come through email relationships; these friends are always ready to listen and to pray when needed.
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 fatiguability (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.
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 whoever'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, washing, 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, fatigue-ability 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.
FUN WITH THE RECLINER
For specifics about Connected Carole's life, see Carole's Daily Life.
Carole's Dream for Navigating the Storms
I suspect there are others like me out there, and I would like this site to be a forum for us to talk and interact, to offer ideas and tips – a place to be ourselves. I would also like this to be somewhere that those who care about people can learn about and encourage us.
My dream is that you, as a Dweller, will be encouraged to find that others have traveled these storms more or less successfully. My hope is that Observers will learn who Dwellers are and be inspired to become Responders who assist. My vision is that all will benefit from ideas posted here.
Support and Help
Thank you, Joe, for putting up with all the inconveniences caused by the time it took me, first, to learn how to do a website and, second, to get Navigating the Storms up and running.
My friend, Francee, edited much of this work, which originally appeared in my first blog about four years ago. Thanks, Francee, for all your help and ideas.
Thanks to all who have encouraged me to do this work and who support me in prayer.
Photos and Artwork
Credit for my picture goes to Suzi Jenkins of The Hope Photography. Thanks, Suzi. I really like it.
Brendon Reader, my artist-nephew, designed the logo for Share The Load Ministries. Thanks for translating my concepts into art - and putting up with all my questions. Good luck with your artwork!
Computer Inspiration and Help
The impetus for doing a WordPress.org site came from Michael Hyatt through his website. His posts provided the encouragement to try a site, the know-how to get started, and the offer that propelled me forward. Thanks, Michael, for your work.
A gigantic thank you goes to my local library in the Spokane County Library District. It offered an excellent, free online class on creating a WordPress.org website through Gale Courses. The help of the instructor, John Agress, enabled me to quickly learn the basics. He also taught many of those extras that add to the enjoyment of a site.