Betty’s Story About Struggling With ME/CFS

By Betty from Mitchell, South Dakota

In December of 2010, just 6 weeks after my baby boy Iver, known to most of you as Gus was born, I began noticing that something was very wrong with my body. You see previous to my pregnancy with Iver I had been diagnosed with hypoglycemia, so I believed that I just needed to take better care of myself, but then I began experiencing new symptoms unexplained by that diagnosis. I was tired all the time, my muscles were weak, tremors in my hands, my joints were red and painful and the lymph nodes throughout my body hurt all the time. I also lost my strength very quickly, collapsing to the floor if I did not sit down when they felt weak. I went to my Doctor and she ran tests and they all came back normal. I explained it away. Maybe I had a virus or was it that I had just had a baby? After all with a new baby and a busy 4 year old daughter as well as a six year old son of course I was tired and worn down. Surely, I just needed to take better care of myself. Then in January of 2011 my body shut down. I was admitted to the swing bed unit at Avera Queen of Peace for observation and testing. Not being able to determine what was going on, they transported me by ambulance to Mayo Clinic. I didn’t want to leave the swing bed unit. I did not want to leave my children, my little baby, my husband. How could I travel there alone? I was so sad. The day before I was to go to Mayo, a couple we knew from a Love and Respect course named Steve and Kay French walked through the door. They said “How would you feel about us going to Mayo with you?” I was amazed and shocked. How would it feel not to go to this enormous facility, where they would do who knows what to me with support? People who would hold my hand and pray for me and comfort me every step of the way? I was blown away and overjoyed. It was as if God had sent angels to walk beside me there. When I arrived at Mayo, I felt joyful…thinking finally I will have answers and get well. At Mayo, Kay and I talked nonstop and she tried her best to encourage me to do everything in my power not to give in to fear. We watched a movie when we ran out of words and Steve shared a poem he was writing about his grandson. I felt loved and cared for. The next day my sister and her husband and my two nieces came from southern IL to Rochester to be there for me. I enjoyed snuggling with the girls in my hospital bed and my brother in law told me jokes trying to keep my spirits up. My sister was my advocate, asking all the questions my mind was too jumbled to even think about. My brother in law said to me at one point “I don’t understand why you’re here. You are such a good person. How could God do this to you? How did this happen?” I didn’t have an answer for him then, but the Holy Spirit whispered to my heart “This is not a punishment…it will be used for God’s glory.” I took comfort in that, but at the time, I knew nothing of God’s timetable. I was at Mayo for three days with tests and evaluations all day long when a team of doctors came to me and said “we aren’t sure what is wrong with you, but you do not have hypoglycemia. We think you should return home and see a neurologist. We believe you may have POTS.” I was devastated. Go home? I was sure Mayo was the place I would be healed. They would know what was wrong and I would return to my family as the mother and wife I had been before. Later I realized that I was putting the doctors where God belonged. My faith was in their knowledge and not in God’s plan for me. My sister and her family returned home. My mom drove from Mitchell where she had been taking care of my children to Rochester to bring me home. She stayed a few days after that renting me a 16 inch wheelchair that would later become my own and taking me to the first appointments and tests the Mayo doctors believed I needed to see. I did not want to continue my journey. I was terrified and did not want to know what lay before me. Jeff and I knew we needed help. We asked our friend Vicky if she would consider coming in to our home to care for Ella and Gus. Although she was almost seven months pregnant at the time she agreed. She stayed at our home from the morning until the early afternoon when Jeff’s brother Brian who lived with us would help with the kids until Jeff would return from work. Vicky’s care of my children and my heart continues to this day. Returning home from Mayo began a flurry of trips to see a host of doctors. At that time I could not balance, had little strength to hold my body up, had trouble forming thoughts, several episodes where I went in and out of consciousness and many other neurological as well as physical difficulties. I had lost almost 30 pounds and much of the muscle mass in my legs. I was also very sensitive to light, sounds, and large groups of people. My doctor sent me to a neurologist, a cardiologist, a pulmunologist, a sleep technologist, an infectious disease specialist, and a rheumatologist. All these doctors gave me pieces of the puzzle. I had low brain chemical levels, an irregular rhythm in my heart, a sleep disorder, almost no natural killer cells, I had a raised ANA. I was tested for Lyme, Lupus, MS, Parkinson’s Disease, ALS to no avail. My husband Jeff and I both admit to believing at this time that I would pass away neither of us ever knowing what had happened to me. But that wasn’t to be so. Vicky gave birth to a beautiful baby boy and we made a new plan for me to care for Gus with the help of volunteers. At this time I was a little stronger and was determined to do it on my own again. This was okay for a short time, but slowly and steadily I began to lose function again. Women from my Bible Study as well as women that I hardly knew came each day to help me care for Gus and myself. This worked well for a time, but it became difficult for us to keep everything running and so once again I asked Vicky if she would care for Gus this time at her home. She agreed to watch Gus three times per week and we found helpers for the other two days. Jeff would bring Gus home at lunchtime and he and I would nap together in the afternoon as Ella played quietly in her room after preschool. When Liam came home from school I would do my best to survive with Brian’s help until Jeff returned home from work. It amazed me to see what God was doing in the midst of our struggle. When Brian moved in it was for him to get a fresh start from his past , but now God was using him to care for us in many ways until a year later when he decided he was ready to strike out on his own. He did and we are so thankful for the blessing he was to us at that time.

One night as I spent time searching and researching my symptoms on the internet, I prayed to God to lead me to someone who could help us. Moments after that prayer I came upon a doctor in Charlotte, North Carolina who specialized in M.E./CFS and Fibromyalgia. As I read through the information on his page I thought this sounds a lot like me. He had a document for people to take to their primary doctors with tests to determine if their was a possibility I could have this disease. I took the paper and my doctor and we began testing and preparing for the possibility of me going to see him. After my tests were completed, my doctor told me to make the call and see about making the journey to this doctor whose name was Dr. Lapp. I called the office eager to begin seeing Dr. Lapp, but when I called I found out that our initial visit would cost over $1000.00 let alone the cost of traveling there and whatever further tests would be required during my appt. I was not disheartened. I believed that if God had this in our plan he would bring it to fruition. I stopped into the church office that week to pick up my bible study workbook for the next session and while there ran into Pastor Nash who asked me if we were having any success on a diagnosis. I told him about the trip we were planning to see Dr. Lapp and that it would be some time before we would be able to raise the money to travel to Charlotte. A few days later, Pastor Nash called and told me that an anonymous donor wanted to help pay for our trip to see the specialist in Charlotte. I of course inquired about who it was shocked at the generosity and act of love show to our family, but to this day, he has not told me who it was. I will never be able to thank that person or those people enough. The next week, Pastor Nash told me that he had a check to go towards my trip. I took it from him, hugged him, and placed it in my pocket. When I got into the van, I opened the envelope and found the exact amount Jeff and I had needed for the doctor’s fee as well as what we had budgeted for airfare. We had never told anyone the total amount we had been trying to save for the trip. The church secretary called us the next day and asked if we had considered where we would stay in Charlotte. We hadn’t. She asked i we would consider letting her contact a Wesleyan church in NC and see if anyone there would put us up. I wasn’t sure I wanted to stay in someone else’s home as sick as I was, but my accountant husband was adamant and so I agreed. We were connected to a couple from the Wesleyan Church via email and began corresponding to work out all the details. We flew to Charlotte, February of 2012. Jeff pushed me in my wheelchair to get around and I was very ill during the flights and layovers. I just tried to survive the trip. When we got to the Queen City we rented a car and drove from the airport to our host family Dick and Judy Wolfe’s home. We were immediately rushed in and greeted as if we were long lost relatives. They took such wonderful care of us and we still keep in touch with them today, visiting them when we are back in Charlotte for my annual exams and tests. The day of my appointment we arrived and Doctor Lapp’s office and after we had spent an unprecedented six hours spent with Dr. Lapp alone, we were given a diagnosis: Myalgic Encephalomyelitis or ME/CFS and after further testing that day in his office it was also determined that I had POTS (Postural Orthostatic Tachycardia Syndrome). The good news was Dr. Lapp had years of experience and ideas to help improve my function. The bad news was and is that there is no cure. The day after my appointment with Dr Lapp, Dick and Judy took us to the Billy Graham Library. It was wonderful to learn all about Billy Graham’s life and his ministry with a couple of new friends. That week we spent in Charlotte gave us not only hope, but also precious time for Jeff and I to reconnect. A cushion of peace from God before being tossed back into the rough seas. I felt that the life I knew was slipping away, but God had more blessings and joy in store for our journey.

The disease of M. E has taken many things from me. Some painful. The ability to be independent, to drive on a consistent basis, watch much television, talk on the phone for lengths of time, to stand for long periods of time or even go outside for a walk. Some heart wrenching. The ability to carry my baby, play with my children, go on family adventures, take a shower and some days even go from my bed to the bathroom and back. While each day is still extremely challenging, God brings joy. Without the distraction of television, I began doing more bible study and it seemed each day there were lessons and verses to cling to and lift my soul. Another joy is our miracle child, Gus. Bringing joy to my heart in the midst of raw pain. I call him my miracle child because, if we had not been misdiagnosed early on when my symptoms first started, we would have never chosen to have him and though it hasn’t been easy,I can’t imagine our lives without him. He and Liam and Ella give me a reason to keep hoping for a miracle and believing some day my health will be restored. God has given me these children and I am so grateful. He has also given me perspective that I didn’t have before becoming ill. When everything is taken away , you learn to appreciate the simple pleasures and they have become enormous sources of joy in my life.

When I first got sick , I prayed for wisdom for the doctors to be able to heal my body. Then, as time went by, and I went to more and more doctors that didn’t have any answers for me…just more evidence that I was indeed sick, I began to realize that I was putting my faith in the doctors and not in the Lord. Some people of faith told me if my faith was stronger, I would be healed. For a while, I just believed I didn’t have enough faith to be healed and that really hurt me. I read all the verses in the bible and books on healing and spoke with to many people who had been healed of their own sickness. They all seemed to say “Believe that He can do it and you will be healed.” I did all I could think to do. Many people of faith came to our home including an African Bishop and anointed my head with oil and prayed for my healing. I believe with all my heart that God can heal me if he chooses to do so and that He is able to heal me, but I still have to live with my life in this body with M.E. each day. I struggled with God about this. What else could I do? As time went on I became angry and had a hard time trusting that He was for me. All around me things were starting to splinter and fall apart and I wondered if He loved me why he would put me on this road. Why would He let this happen to us? My family had been faithful to the Lord in all the ways we knew how and yet I was desperately ill and at times bed bound, my children were suffering from all the stress we were under and missing their old Mom…the one they had counted on. My baby preferred to be held by his father or our other care providers and didn’t seem to need or want me at all. My husband and I were overloaded with stress and the demands of not only his job which included outside travel and after hours work, but he also had to take on the demands of three children under the age of six as well as my care. Our marriage was struggling, Our communication and time spent together was rocky at best. Both of us wanted our old way of life back and had trouble with our new normal. Amidst all the hardship, we found joy in the way people ministered to our hearts. Our old Lifegroup stepped in to help us baby proofing our deck as Gus became mobile. They also took our kids one night a week, so that Jeff and I could take time to spend time together, sorting out our feelings and how we each were coping. Looking back I can still see all the pain, but God also showed me through the people he sent to help that he could and would meet our needs if only we would let him. To this very day we have people who get groceries and bring us food, run me to doctor appointments, take our kids to and from school, daytime helpers for my rest time the two mornings a week that Gus is here, and people who stop in just to talk and pray with me. There are countless others who have helped by meeting any need they have heard of and by praying for us faithfully. I realized my anger was a normal feeling of struggling with all the pain I was going through and that it was okay to ask why, but to hold on to my anger would only lead to bitterness taking root in my heart. I did not want that. I continue to ask why, but I also remind myself that I can trust Him and He is sovereign. He sees my pain and I don’t walk through it alone.

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