February 21st I posted about finding my way through Fibro with God’s help. Especially the leading of the hymn “O Love That Will Not Let Me Go.” Before I went to the hospital for diagnosis I occasionally heard things such as, “When you go to the hospital …” What? Who said anything about the hospital? (Later I realized this was reassurance so I would not go into utter panic at the idea.) I also heard “You will know an answer to what is causing this before the chicory blooms.”
One of the delights of early summer are when the chicory blooms blue flowers and the Queen Anne’s Lace starts to put forth white flowers in contrast to the blue. They often grow together along the roadside.
How like the Lord to comfort my heart with something that He knew I would recognize and delight in! He was true to His word and we did have a diagnosis before the full bloom of those flowers. The flowers were lovely. The understanding of what it meant to have fibro, not so much.
In Acts 10:34 and Romans 2:11 Peter and then Paul assure us that God is no respecter of persons. He shows no favoritism or special treatment. Since the Lord was able to lead me through that time of fear and not knowing what was happening, I am certain you can be lead by His Spirit also. Still your heart and mind. Try every day to listen for that still small voice of comfort and guidance. Whether you have a chronic illness or not, God wants to speak with you. He desires your attention and presence.
When unexpected things such as hospitalization come your way, try to remember you are never alone and God wants us to do as Mary Englebreit illustrated:
Brother David Steindl-Rast in A Listening Heart, The Spirituality of Sacred Sensuousness wrote, “Any given moment confronts us with a given reality. But if it is given, it is gift. If it is gift, the appropriate response is thanksgiving. Yet, thanksgiving, where it is genuine does not primarily look at the gift and express appreciation; it looks at the giver and expresses trust.”
This idea of gift can help us with the command to give thanks in everything. (1 THES 5:18) Gifts are not always welcome at first. Give my husband an iPhone and he will balk. How can he trust that this device can be learned with practice and become a valuable asset as the computer in his pocket? He sees it as lesser than Samsung and harder to learn.
When I was first diagnosed with fibromyalgia the given reality seemed bleak. I was thankful that I did not have a brain tumor or others things the doctors searched for, but overall gratitude was sorely lacking. Somehow I found my way to the writings of Victor Frankl, an Austrian psychiatrist, neurologist and holocaust survivor.
“When we are no longer able to change a situation – we are challenged to change ourselves.”
When he found himself a prisoner in a holocaust camp, he was able to understand how some prisoners survived the atrocities and how some gave up. The power in our minds can influence everything. Not that he could deliver himself from the camp, but he found means to survive using his thinking and observed others doing the same. He later wrote “Man’s Search for Meaning” which inspired me.
Often when chronic illness is diagnosed we begin to think thoughts of self pity and woe that sound like “Why me?” Frankl helped me realize that I could help myself with as much of a positive mindset as I could find. I educated myself. Refused to attend support groups that were only depressing “why me?” sessions. In fact, I eventually started a support group that focused on education about fibromyalgia, research, and finding ways to cope with fibro instead of “sitting in a bathtub of self pity and asking others to wash my back.”
Brother David says “Happiness is not what makes us grateful. It is gratefulness that makes us happy.”
As I learned and grew and did the best I could to take care of myself and my family, I eventually began to cope better, exercise more and move along with my life past the diagnosis and life changes that brought.
I am grateful to God for guiding and directing me then and now. Without His help, I surely would have floundered for several years and would not be the happy person I am today.
When I started writing my blog Treasures in Plain Sight I thought I would need another one for poetry, etc. so I began Stand and Tip. Now that I am more experienced in the practice of posting I think I will take my husband’s advice and consolidate the two blogs into one. When it is time to pay Word Press again I will let you know a few days in advance to expect only one blog from me with both kinds of writing.
So when I wrote “Tiny Baby in the Background” in 2014 I never thought it would be posted for the whosoever to read. But I am so glad you care enough to read my things and hopefully take some comfort with you.
Tiny baby in the background crying, crying and I am drawn to her as the tiny baby inside me cries write it, write it
Struggling under the fog of constant pain drugs, drugs, distraction to nth degree rock that baby and hold her comfort her, rock her
Unconditional love and kindness will prove again the victor as, given time, the words will come Be at peace
Though the Lord may give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself any more, but your eyes shall see your Teacher. And when you turn to the right or when you turn to the left, your ears shall hear a word behind you, saying, “This is the way; walk in it.”
There is phenomena in Yellowstone called a mudpot. Wikipedia says: ” A mudpot, or mud pool, is a sort of acidic hot spring with limited water. It usually takes the form of a pool of bubbling mud. Mudpots form in high-temperature geothermal areas where water is in short supply. The little water that is available rises to the surface at a spot where the soil is rich in volcanic ash, clay, and other fine particulates. The thickness of the mud usually changes along with seasonal changes in the water table.
Well, having a recent diagnosis of a chronic illness is sort of like becoming a living mudpot in human form. Imagine having an acidic hot springs with limited water in your body. The high temperature of intense life changes was nothing short of boiling my brain. The fatigue from fibromyalgia can be stunning. I often awoke feeling as if I was hit by a Mack truck. It is always a loaded question to ask me how I feel. Especially in the morning, because more often than not I wake up and I am NOT refreshed.
I had the boiling pot of chronic pain, fatigue, confusion about what was happening to me, frustration trying to explain it to others … yeah my life had become an entire field of boiling mud pots. How would the Lord my Teacher reach me in the midst of all this? He was not hiding Himself capriciously, just using every available resource to encourage and instruct me.
One resource was Macrina’s book as pictured here. It has a new cover now. She wrote, “There is nothing so healing in all the world as real presence. This can happen only if you are willing to unwrap the ordinary by staying with it long enough to harvest its treasure.” I had to ask myself if I would be there with my eyes wide open or would I remain blind to the holy because I’m too busy to see? I do not remember before this book that anyone gave me permission to trust my own experience as prayerful and holy.
I read the quote below just the other day on Gratefulness.org.
The big question is whether you are going to be able to say a hearty yes to your adventure.
Being slowed down to the new tempo of chronic illness, moving more slowly than ever before in my memory, I began to look about me, especially for my Teacher, the Lord, in my everyday ordinary life. I started to learn to trust my own experience as prayerful and holy even though I did not have a huge supporting cast of church members or even a large group of family.
Years later I would get to hear Macrina speak in person at the Sisters of Charity convent in Cincinnati. It was a joy to see her in person!
As I mentioned earlier, when first diagnosed I lost many of my friends who thought I should be able to pray for healing and get it. The Lord on the other hand kept telling me, “I will be with you in this.” So I chose to follow Him. They say the best way out of something is through. This hymn often comforted me. They skip verse 2 , and that is fine.
The lyrics are below:
Written by George Matheson and Albert Peace 1. O Love that will not let me go, I rest my weary soul in thee; I give thee back the life I owe, that in thine ocean depths its flow may richer, fuller be.
2. O Light that followest all my way, I yield my flickering torch to thee; my heart restores its borrowed ray, that in thy sunshine’s blaze its day may brighter, fairer be.
3. O Joy that seekest me through pain, I cannot close my heart to thee; I trace the rainbow thru the rain, and feel the promise is not vain, that morn shall tearless be.
4. O Cross that liftest up my head, I dare not ask to fly from thee; I lay in dust life’s glory dead, and from the ground there blossoms red Life that shall endless be.
Years later a heard a similar melody at a conference. I called my husband to try to find it. I had to get home and find out what that original one was! And I eventually did. There are times when the Holy Spirit “haunts” me with music. He comforts me in ways no one else can by dropping the line or melody of a hymn into my soul. Then I seek until I find and there is God ready to hold me close again!
I wish someone would update the language on this hymn, set it to guitar music, and bring it back again. Would love to sing it in church!!
In terms of fibromyalgia, verse 1, O Love that will not let me go. Ever. I rest in You and give You back the life I owe. In Your ocean depths the flow of my life will richer, purer be. Verse 3, O Joy that seeks me through pain, I cannot close my heart to You. Ever.
Where has your comfort been in times of deep distress? Can you lean upon that source eternally?
Journal entry, April 1990: “Joint pain traveled 5-6 different places in 20 minutes. It is like having your body turned into a pinball machine.” My uncle had one of those at his bowling alley where my family often hung out. I can still hear the sound of those bells and paddles and points ringing up. If you do not have experience with pinball machines, watch a bit of the video to get the full lights and sounds experience. No need to watch entire video. As lights and bells occur just think shoulder, knee, elbow, shoulder, shoulder, shoulder, neck, back, knee. You get the idea.
Pinball pain – moves from point to point but there is a method to relax into it and not be so reactive to the pain.
When I was first diagnosed someone gave me a small book entitled “Celebrate the Temporary” by Clyde Reid. [ISBN 0-06-066816-4}
One chapter is called Lean Into Your Pain. The concept he puts forth is to move behind the pain. Most of us have a natural resistance to pain. So pain comes, you tense up against it and actually make it worse with that response. His idea was to find the center of the pain and slip behind it, so to speak. He says that ‘leaning into life’s pain requires small doses of plain courage.’ So I tried looking my pain in the eye. When the pinball paddles started slapping and the bells and lights began ringing and flashing I made it a practice to try to sit, breath, look for the source and learn to breathe into the identified point. He points out that when you concentrate on the pain it can actually diminish or even disappear.
I was receiving physical therapy at that time. The therapist was so amazed that someone could have ‘so many painful trigger points and still be walking around.’ She called other therapists over to examine my trigger points as a learning experience. I was amazed. You see, as a child I was told that I was a “ninny” and could not take pain. The therapists say I have a very high pain threshold. Now I must learn to listen to my body and take care of it better. The challenge with fibro pain is one is not always able to trace the pain back to HOW it occured! With acute pain you know you sprained your ankle. With fibro chronic pain you can lose your mind trying to figure out where it came from or what caused it.
So if you have a “pain flare” (an honest term) that turns your body into a pinball machine, stop, breath, look into the pain and try to see it diminish, even as you watch. If nothing else you might relax and stop tensing against the pain thereby making it worse!
Notes from a talk: “Just as the woman at the well in John 4:5-24, we must confess our helplessness, confess our own need. This leads to fulfillment, self examination, repentance, receiving forgiveness. We can be fulfilled as we find living water.”
I heard, “Molly, you must be willing to walk blindly. Do not look to tomorrow. Live in the NOW in My Presence. Trust Me. I love you. This will be a severe discipline. This will be for your strengthening. You will have more faith and be stronger for having gone through it. STAY VERY CLOSE TO ME. Be enfolded in a cloak of love by the Holy Spirit.”
(This occurred before the diagnosis was actually made.)
“My friend, Kathleen, told me to document this illness. It is all happening so fast and I get so very weak. This could be extra hard. HELP, Lord!”
In 1990 I began a medical journey that continues to this day. After the diagnosis of Fibromyalgia came the challenge of learning about it and learning to live with it. I also dug around in my history. Interesting! Grandma Snapp had something they called rheumatism. She often applied vaseline with camphor and menthol to her aches and pains.
Something similar to this lovely can. And guess what!? They evidently still sell it at WalMart and other locations.
My mother called hers arthritis and used a combination of BenGay and alcohol to treat the symptoms.
I tried the BenGay, too. Alcohol does not heal anything.
I am most likely to use China Gel which my good friend Betty made me aware of. China Gel is a mixture of: Menthol, Camphor, Ginseng Extract, Angelica Extract, Lavender Oil, Aloe Vera, and Witch Hazel. Betty’s massage therapist uses it.
I teased Betty once when I found it at Amazon writing , “Look! We can order it in the handy gallon size!”
So this condition seems to be moving through the generations. Most likely to be in women, though men are known to suffer from it. The chronic pain brings the bread of adversity and water of affliction. The Lord has kept His promise though and never left me!
Though the Lord may give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself any more, but your eyes shall see your Teacher. And when you turn to the right or when you turn to the left, your ears shall hear a word behind you, saying, “This is the way; walk in it.” Isaiah 30:20-21 (NRSV)
He led me to a group that informed me about the condition. I read up on as many medical journal articles and new publications as I could. The #1 treatment is exercise, and sadly, the hardest people to motivate to exercise are people with Fibro. Exercise does NOT make us feel better. It does help us cope in the long run.
For example, in 1991 I went to an aerobics class with my sister and could keep up with most of what they were doing. I did not feel bad at the time. The next day I could hardly get out of bed, walk or function. Such unrelenting pain and stiffness.
Do not tell a Fibro person “You are only as old as you feel.” Oh goodness, then I must be pushing 90!
How can it be that we can taste these things simultaneously? Don’t they seem mutually exclusive?
Yet in Isaiah 30:18-21 (NRSV) we read, Therefore the LORD waits to be gracious to you; therefore he will rise up to show mercy to you. For the LORD is a God of justice; blessed are all those who wait for him. Truly, O people in Zion, inhabitants of Jerusalem, you shall weep no more. He will surely be gracious to you at the sound of your cry; when he hears it, he will answer you. Though the Lord may give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself any more, but your eyes shall see your Teacher. And when you turn to the right or when you turn to the left, your ears shall hear a word behind you, saying, “This is the way; walk in it.”
The bread of adversity, water of affliction accompanied by clear direction, instruction from the Lord Almighty. When I was diagnosed with Fibromyalgia in 1990 I experienced this misery and joy in combination. It was a weird time to say the least!
The doctors had difficulty diagnosing me and finally admitted me to a hospital for tests to rule out the other “big nasties.” For example, it was strange to have results come back from a brain scan that showed there was no brain tumor, and instead of being relieved my husband and I were frustrated and angry. After each test, with no definitive results, we kept thinking if this illness is not that, then what is it?
Fibro is a strange disorder. The diagnosis is basically process of elimination and a few factors that should be present for 3 months prior to diagnosis. I have now lived with Fibro for 29 years. At the time I had never heard of it. Today the Arthritis Foundation says:
“To diagnose fibromyalgia, your doctor will ask you about your health history and give you a physical examination. A physical exam can rule out other conditions that may cause chronic pain and fatigue.
A diagnosis is largely based on your input on the following criteria:
Widespread pain index (WPI) score: The WPI lists 19 areas of the body where it’s common for people with fibromyalgia to have pain. You get a point for each area selected.
Symptom Severity (SS) score, in which you rank the following symptoms on a scale of 0-3:
Physical symptoms such as headache, weakness, bowel problems, dizziness, numbness/tingling, hair loss
So while my charismatic friends were telling me if I only prayed hard enough, or had enough faith I would be healed, the Lord was saying “I will be with you in this.” Should I try to pray this away when the Lord is speaking otherwise? Yikes. This is a long story and I hope to tell it well. Probably in several sections. Hope it brings enlightenment and encouragement to many. Not every person gets every symptom. Not all symptoms stay permanently. Sort of like living on a nightmare-go-round with symptoms instead of horses and carnival music.
There are a lot of artwork, posters and diagrams about Fibro online. Many of them sound sarcastic. That is likely caused by the fact that people with fibro do not LOOK ill and are often not believed when they talk about their symptoms. Below is one that is not too offensive, but descriptive.
Like it or not we are creatures of habit. And some of our habits are lousy ones. I first heard this saying when I attended Adult Children of Alcoholics meetings many years ago.
“Until the pain of remaining the same becomes too great, there will be no change.”
Truly believed that when my mother died the problems I grew up with stopped. AcoA (Adult Children of Alcoholics) helped me recognize the problems were ingrained in me during my upbringing. We can choose change. We can choose to move out of our habits. We will need help to do that. There might even be relapses. But we need to continue to choose to change. Even after I have lived forty-three years without my mother, I still continue to need to choose change. I cannot tell all the ways God has helped me and shown me paths o choose and ways to change through the years.
I grew up in an alcoholic family. When I was at home I decided when I got out of there I would do things differently with my children in my family. I did not want to pass on to my children and husband the co-dependent family of origin behaviors that I experienced. Fairly certain I did not succeed in shielding the children completely, but I did the best I could with what I learned.
I chose to change because the pain was a strong motivator. I chose a different path.
When I was first diagnosed with fibromyalgia (a chronic pain condition) I read a book with this quote. I do not remember author or title, but it is powerful truth:
“The crap and the tears can be transformed into water and soil for the soul.”
Chronic pain is crappy. There is just no way around that fact. It colors your day-to-day existence, usually like yucky mud. Hard to rise above the pain and keep your wits about you. Sometimes I do not even realize I am struggling with pain until I snap at my husband. There is very little I can do to control pain, but I am learning to take the crap from it and compost it for soil and use the tears as water to grow good things for the soul.
That is part of how this blog was birthed. We can grow things from this soil. Things that may nourish and help others. Things that can bring encouragement and cheer. Insights about the human condition. Having cried often, I have a much greater sensitivity to others who suffer from chronic conditions. I can relate in ways I never would have imagined from this lousy situation. Fibromyalgia is not progressive and will not kill me, but it can truly make me miserable and sometimes grinds me down to a powder instead of tissues and bones.
Sayings can help us. I post the ones I need for encouragement. Eventually I memorize the best ones. I am thankful for others who have gone before me and written their experience. Share your life with others and you cannot help but grow!