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My sister Anne came over one afternoon to give some haircuts. When it was my turn, I half stood. I said, “I can’t…” and the world went black. My sister called Audrey (eldest daughter and CFS expert by experience). One of my sons carried me to the couch. I was coming to when Pastor Skip came in. I told them not to call an ambulance and so did Audrey. I needed to rest. I had pushed too hard. After some hot tea, I agreed to go in and get my vitals checked. I was too weak to walk. Pastor Skip supported me while we muddled through the rain. He left me hanging on a counter while a nurse gave me some forms to fill out. I hit the floor again. I hadn’t passed out this time. My body was just too weak to stand. I managed a laugh when a nurse in her haste to get me in a wheelchair hit every wall and ran over her own foot. (I love nurses!)
Shortly after that episode, I made the trek back to Dr. P. in Pittsburgh. Audrey drove. I was still too weak to make the trip. I had pushed too hard for too long. CFSers know pushing too hard leads to crashes. Crashes mean the body quits. Muscles waste. Digestion slows. Joints ache. Muscles quake and are sore. For me, there is a fever, swollen glands, headaches. Dizziness. Virals rage. Heart rate jumps out of rhythm. There are many more symptoms, you can read them in My CFS journey (abridged) HERE. CFS pushes back with a vengeance when I push too hard.
By now, if you haven’t looked at Lori’s and my Instagram account (2girlsnotrunning) or the photos in this post, you may imagine me as a frail women, sitting in a dark room wrapped up in a blanket. Nothing could be further from the truth (unless it’s winter and I’m reading a book by the fire). I’m pretty active. I love to workout. Lori helps me be consistent and rest when I need to. I’m getting ahead of myself. Both Lori and I have a goal to be healthy which leads me to my first point. Healthy is a relative term.
CASA Super Hero 5k (April 29th) Fun time!
- Get healthier. Coming out the crash I spoke of above, my health could be summed up in negative numbers. After months of some strong anti-virals and adjusting some hormones, I began to work on getting healthier. I didn’t run a 5K or walk a mile. I went in my backyard and walked for five minutes. Then ten. All the while, I shook from the exertion. My muscles had wasted away. It took time to get them back. I couldn’t start where I had left off before the crash. I started over. I couldn’t compare myself to other’s or listen to fit women who told me to push harder. What was easy for them (going up and down stairs) was excruciating for me. For a long while, I could only do anything in fifteen minute increments before I needed to rest.
- Don’t measure your success based on someone else’s yardstick. When I started going to live PiYo class post last major crash, I couldn’t hold a plank to save my life. Instructor LeeAnne showed me modifications and encouraged me to keep coming. If I would have measured my success by her yardstick or someone else’s in the class, I would have quit. The first several months I went, I limited my activity the day after. I used that day to recover.I might take a short walk instead of a full blown workout. CFSer’s cells don’t recycle energy quickly. That leads to post-exertion crashes. Find your starting point and work from there. Your yardstick may be at zero right now. Start at zero. If that means yard walking for five or ten minutes, celebrate that. Keep track of what you do and work up by increments. Don’t go from zero to P90x if you are a CFSer post crash (even if you could do it pre-crash). Your body needs time to recover. Start slow and small. Celebrate every victory. Build by small increments. One more minute. One more step. Listen to your body. A general rule is: if you feel the same or better the day after exercise (sore muscles excluded) then you can continue that exercise. If you feel worse, crashy, flu like symptoms, fever swollen glands, etc (whatever your tell is), you had better scale back.
- Know YOUR body. Know YOUR limits. I’m not cured. I’ve read those posts and those books about people who say they have the key to my CFS recovery. One drink that washes it all away. One supplement that is a magic pill. I have had friends chase me down and offer me the drink that will ‘cure it all’. It doesn’t. It hasn’t. I do take lots of supplements that help balance me out and add some energy. I have asked Jesus to cure me a million times. I’ve been told by some in the ‘name it and claim it’ community never to say, “I have CFS”. I’ve tried pretending I don’t have it. It only slaps me in the face and I suffer the consequences. This may be the thorn in my side that I have to live with. Jesus has never left my side. He pulls me through the dark times. I haven’t had a major crash in several years. I still have mini ones and those are enough to quickly get me back on track. I love the tired feeling after a long hike. It’s different than the CFS tired. I know that NOW. I didn’t used to. My old habit was to push myself in every area, filling my calendar to overflowing and run it like a gauntlet. At the end of the week, I came out bruised and battered and in bed for a day or two or a week. I don’t do that (often) anymore. Knowing YOUR body is a HUGE key to a healthy life. I need a mid afternoon break every day. Sometimes that means a half hour nap. Other times, it means watching a show or reading a book. I can’t stay up late. I never have been able to. If I do, I pay the piper. What about you? Too much sugar send you over the edge (me)? Skipping meals mess with your blood sugar (I have to eat every two hours). You must get to know your body. It is telling you something? Eat . Drink. Sleep. In today’s fast pace culture, we’re told to Do. Do. Do. We’re doers instead of be-ers. I’m much more than a be-er now. By that I mean, I pay attention to my state of being. I keep my margins wide. I allow for rest days. Jesus and I have a calendar planning meeting every weekend. If I have too much going on, I cut back. I say no. I’m not afraid to reschedule with someone. In return, I live a pretty great life. Instead of crashing and burning, I plod along steadily and make readjustments along the way. I enjoy my life.
*Just a note. Major crashes have taken me several years to recover from. Yes, you read that correctly. YEARS. I didn’t get back to a level of fitness that I could go to a class or participate in a 5K overnight. If you are a CFSer (even an un-diagnosed one) be kind to yourself. Don’t try to do to much too soon. Small increments of change make a huge impact.
Friend Lori Shaffer and I have an Instagram account–2girlsnotrunning. Lori runs the account and I try to remember to send her my workout photos. I stink at the photo part. Lori has an amazing story which she shares in bits and pieces on the account. You should check it out.
Here’s the sad news. I haven’t shared my story. Lori’s story is one of weight loss, muscle building, healthy eating and determination. Mine is equal in determination, however different in origin. Like most women, I have battled those pesky ten pounds here and there. I have always loved to work out. Weird. I know. I haven’t always been able to. There have been seasons in my life when I have been almost bedridden. Other times, I have been able to get up, do some homeschooling, cooking and light housework only to crash for four or five hours. Sounds like I just got really tired, right? Motherhood and homeschooling are exhausting. There’s more to the story.
As I child, I struggled with failure to thrive, topping the scales at fifty-five pounds in the sixth grade. As a teen, I couldn’t stay up late like other teens. I went to bed by eight o’clock. If by chance, I did stay up late, I crashed the next day. I had migraines daily. Mom took me to multiple doctors with no answers. Fast forward to marriage and motherhood. I often felt as if I were walking through quicksand. I assumed everyone else did too.
After decades of struggling, I finally got a diagnosis- CFS (Chronic Fatigue Syndrome),also called, in some circles, myalgic encephalomyelitis, because of its effects on the muscles and brain. I don’t like the name and there is talk of changing it. The New Yorker states:
“As the authors put it, “The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.” They suggested that it be given a new name: systemic exertion intolerance disease.”
I hate the connotation associated with the words chronic fatigue. When I have shared the name of the immune system disorder I suffer from, I often hear the reply, “well, I’m tired too.”
Instead of trying to defend myself or the name, I’m going to explain in plain English what the disease does. It’s multisystem, meaning it attacks many systems of the body at once. It is viral in nature. I have had as many as three viruses attacking my body at the same time. Instead of the fighter cells waging war on the viruses, they get confused and attack my organs and endocrine system. Fighter cells are confused because the immune system ‘wallpapers over the viruses” so everything looks normal. The virus alarm has been sounded so the fighter cells fight, just the wrong thing. ME.
- The organs are under attack- diminished cardiovascular function, even after exercise; slowed information processing in the brain
- Cells don’t recycle energy quickly like non CFSers do. Cells have low oxygen levels. Post exertion crashes are common. This explains why CFSers can have a great day, push too hard and then spend a couple days in bed.
- Endocrine system is under attack- Adrenals, thyroid, hormones (totally out of whack). Hypothyroidism is common as well as swings in cortisol levels. Too much cortisol followed by too little.
- With a compromised immune system, other syndromes or diseases join- Celiac, Fibromyalgia, diabetes, cancer
- Because cortisol levels are out of whack, there may be extreme anxiety
- Psychological symptoms may include- agoraphobia, panic attacks and extreme fears ( and more). When these are diagnosed separately from CFS, there is a tendency to focus on them alone. They are side effects. Someone who passed out at the mall last week due to CFS may suddenly not want to go out.
None of this sounds super scientific. I don’t mean for it to be. CFS does affect the whole body. Like I said, it is a multisystem disease. The reason it took me so long to get a diagnosis (like many others) is most doctors only look at one area of the body at a time. So, I went from doctor to doctor getting one part looked at and finding the information inconclusive. The body must be looked at as a whole system in order to treat CFS. EVERYTHING must be looked at simultaneously.
I’ll finish up today with an excerpt from the CFIDS Association of America:
“Additional symptoms are frequently reported by PWC’s such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescriptions changes): psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel; low-grade fever or low body temperature; numbness, tingling and /or burning sensations in the face or extremities; dryness of mouth and eyes, menstrual problems including PMS and endeometriosos; chest pains; rashes; ringing in the ears; allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light handedness; feeling in a fog; fainting; muscle twitching; and seizures.”
I know this is a lot of information. I could have started out with “I was unhealthy and I got better.” No. I couldn’t, because that’s not true. There is more to my story and I will share next week. I needed to lay down a foundation and if you are a CFSer, know you are not alone. I’m right here beside you. I wish we could get coffee and we could share our stories, our valleys, our mountaintops and most of all our hope. If you are a CFSer or know one, please share.
* I am not a doctor and the info I am sharing does not replace seeing one. If you see yourself in the list of theses symptoms, find a doctor who treats CFS!
Last Wednesday, I promised to follow up on my three points on Burden Bearing Mothers. Today, I am talking about number one.
Children from hard places CAN’T, Not WON’T bear their own burdens. They cannot self-regulate.
He ran through the house, knocking chairs over and books off the shelves. “I can’t get him to behave,” his mother said. She covered her face with her hands and wept. “I didn’t know adoption would be this hard. I don’t know if I can do this!”
Maybe you feel this way about an adopted, foster or your own special needs child. It seems as if the child is a cyclone of Dysregulated behavior. While everyone else sits quietly, he is constantly moving, rocking, pounding or getting up every two seconds. He just cant’ control himself. That is, he cannot regulate.
“A two year-old is adopted from an orphanage where she was underfed, under-touched, and neglected. From lack of stimulation, her sense have not developed normally. In her new adoptive home, she is bombarded by unfamiliar sights, sounds, smells, tastes, and physical sensations, and she is bewildered by the social expectations in the unfamiliar environment. Her impoverished early life makes it impossible for her to keep up, and she becomes overwhelmed with stress and frustration. She expresses herself the only way she knows how-through tantrums and aggressiveness.”-The Connected Child
When and how do children learn regulation?
A child learns to regulate through co-regulation. Mother regulates for him first. She wraps him in a blanket when he is cold. She feeds him when he is hungry. Changes his wet diaper. Smiles when he is content. He picks up these expressions and feelings through the mirror effect.
We say a child is unable to regulate when he cannot control his impulses or doesn’t recognize the needs of his own body. He doesn’t recognize thirst or hunger because no one fed him regularly in his early life or he has developed sensory issues. He wears a coat when it eighty degrees or shorts when it is twenty. He has impulse control issues. He grabs what is not his. He stuffs food in his mouth that belongs to a sibling. We see these as ‘bad behaviors’ that we want to snuff out.
A child who missed out on the co-regulation steps of his early life cannot regulate.
Jacob is a great biblical example of the inability to regulate.
Once when Jacob was cooking some stew, Esau came in from the open country, famished. 30 He said to Jacob, “Quick, let me have some of that red stew! I’m famished!” (That is why he was also called Edom.[d])
31 Jacob replied, “First sell me your birthright.”
32 “Look, I am about to die,” Esau said. “What good is the birthright to me?”
33 But Jacob said, “Swear to me first.” So he swore an oath to him, selling his birthright to Jacob. Genesis 25: 19-33
Jacob had no impulse control. He couldn’t wait for food. He didn’t consider the consequences. We don’t know much about his early life, how he was parented, other than his mother favored him. We can assume from his behavior that he struggled with regulation. After Jacob sold his birthright, he spent much of his life in fight, flight or freeze. He ran, deceived and hid. And one night, God came to him and promised to watch over and care for him. Later, he wrestled with God. Literally. And he trusted God.
There is hope, Mothers, for the child who cannot regulate. For the one who is impulsive. The one who lies. The one stuck in survival mode. The one who does things that leaves us scratching our heads.
Each of our children are chosen, before the foundation of the world, in the mother’s womb they were formed. Don’t let the current behavior form prophecies of doom in your mind. Pray the word. Speak the word over your child while he sleeps.
What are some other practical steps you can follow to help this child?
- Food and water every two hours
- Ask him, “What do you need?” instead of “What’s wrong?”
- Give him words if he has none.
- Ask questions that activate the upstairs brain.
- Teach him some coping skills, listening to music, jumping on a trampoline, journaling in pics, etc….
These practices sound simple, but children who cannot regulate need someone to do it for them. If they don’t recognize their body’s signals, they walk around slightly dehydrated and hungry. Asking them what is wrong makes them slow down and process. Don’t be in a hurry or think they always know. That is why we must give them words if they have none. It looks like you need a break, do you? that sort of thing. When the child is ready, move onto asking questions, “how do you think we could solve this problem?” Finally, teach him some coping skills that match his personality. This is self-regulation. Don’t ask a kid who is not keen on sports to use running as a coping skill. Mothers, you know your child, work with him until together you find something that helps. Be patient with yourself and the child. This is investment parenting, not drive through instant parenting. It is a marathon with lots of water breaks and great views. Enjoy the journey.
Linking up with Kristin Taylor for Three Word Wednesday, join us!
We women sat in Bible study sharing our burdens. We didn’t get to the lesson. All of us had so many things we needed to process and pray for. The common theme? Our children. There is nothing like a Mother’s love for her child. There is also like a Mother’s burden of guilt if she feels as if she parented poorly or passed on some genetic trait that resulted in disease, sickness or depression. We Moms are burden bearing beings.
Stoop down and reach out to those who are oppressed. Share their burdens, and so complete Christ’s law. If you think you are too good for that, you are badly deceived.-Galatians 6:2b,3 The Message
This verse was my theme song when I was in college. I thought I had to bear everyone’s burdens. I heaped them on my back and carried them. I jumped up when anyone needed help at anytime. My mom noticed the pattern and shared some teachings with me on having a ‘burden bearing personality’. Turns out, we can take this burden bearing a little too far. I’m glad she shared those with me while I was young because after marriage, children and then adoption, I slipped back down into the pattern of burden bearing too much. Again and again. Some experts call this co-dependency. It can lead to compassion fatigue or physical sickness.
If we read this verse in context, we find a balance-
5 For every person will have to bear (be equal to understanding and calmly receive) his own [little] load [of oppressive faults]. Galatians 6:6
We Moms can take comfort in this. Burden bearers can only take on so much. Each person must deal with their own choices, the fruit of their labor, of whatever sort that is. Good or bad. Sweet or sour. Moms, as much as we would love to save our family from negative consequences, we cannot. As much as we would love everyone to have a perfect life, they can’t. We live on an imperfect world, where people make choices that determine results. Not only that, but the word says to bear the burdens, not to pour yourself out for another by wrecking your own health. If you are bearing the burden of passing on a genetic defect to your child, I’m sorry. I’ve been there. It stinks. But, feeling guilty doesn’t change it. It just weighs us down.
As for adoptive/foster/special needs Mothers, we need to take great care in self-care.
“Because a parent has compassion for a child he feels with him. He enters his pain from his point of view. Entering into a child’s pain comes at a great emotional cost to the foster or adoptive parent.” –The Traumatized Child
Let me end with three reminders for us Moms.
1. Children from hard places CAN’T, Not WON’T bear their own burdens. They cannot self-regulate.
2. Bearing our children’s oppressive faults means co-regulation. Children get their cues from us. If we lose it every time they can’t regulate, they will stay in the cycle of being Dysregulated and we will join them.
3. We adoptive/foster/special needs parents must maintain a delicate balance of being co-regulators, attaching at every possible moment but being detached, not co-dependent.
I’ll be delving into each of these three topics for the next three weeks. Watch for number one next Wednesday!
She stands at the back of the church. She heard the altar call, but she’s not sure she should go forward. She can’t make her feet move. She’s rooted in shame. what if these people knew the truth about me? About the abortion. About the sexual abuse. They would probably throw me out the door. I’m not worth it. I’m not worthy of love. So, she turns and leaves carrying the same burden she walked in with.
Maybe this happened at your church. Maybe mine. Maybe it was you.
Let’s look at how Jesus responded to women instead of how culture has treated them. We can’t hang the character of God on the hook of history. We must study His character by examining His ways, the written accounts of His actions.
Theology + Evidential Method = Truth
Therein we will find Biblical Feminism.
John 8 records the account of the woman caught in adultery.
1 but Jesus went to the Mount of Olives.
2 At dawn he appeared again in the temple courts, where all the people gathered around him, and he sat down to teach them. 3 The teachers of the law and the Pharisees brought in a woman caught in adultery. They made her stand before the group 4 and said to Jesus, “Teacher, this woman was caught in the act of adultery. 5 In the Law Moses commanded us to stone such women. Now what do you say?” 6 They were using this question as a trap, in order to have a basis for accusing him.
But Jesus bent down and started to write on the ground with his finger. 7 When they kept on questioning him, he straightened up and said to them, “Let any one of you who is without sin be the first to throw a stone at her.” 8 Again he stooped down and wrote on the ground.
9 At this, those who heard began to go away one at a time, the older ones first, until only Jesus was left, with the woman still standing there. 10 Jesus straightened up and asked her, “Woman, where are they? Has no one condemned you?”
11 “No one, sir,” she said.
“Then neither do I condemn you,” Jesus declared. “Go now and leave your life of sin.”
Note the conversation between Jesus and the woman.
Jesus-Woman, where are your accusers? Has no one condemned you?
She- No one, Lord!
Jesus-I do not condemn you either. Go on your way and from now on sin no more.
Later, after the women left, Jesus addressed the crowd,
You [set yourselves up to] judge according to the flesh (by what you see). You condemn by external human standards] I do not [set Myself up to judge or to condemn or sentence anyone.
Jesus didn’t judge or condemn her. The scribes and Pharisees wanted to stone her. They caught her in her sin and did not offer kindness or compassion. They only offered condemnation.
Let’s be honest ladies, every movement begins because there is an injustice. We can all agree that women should not be oppressed, neglected, enslaved or abused.
Feminism was birthed through the labor of many women who suffered injustice, including those Jesus spoke to, the woman caught in adultery. We are tempted to ask, where is the man? And I have some other questions, who bursts in the door when two people are having sex? Did they allow her to dress herself? Can you imagine the shame? But, Jesus didn’t shame her. He didn’t heap the law on her head. He treated her with kindness and compassion. He saw her wounded heart.
That’s God’s character. He looks past the behavior and sees the heart. He saw down into the depths of that woman’s soul. He said, in essence, I see you, I see your shame. I love you. I do not condemn you. Go and live a life worthy of the value you possess.
Women are hurting. They don’t need a new law. They don’t need platitudes or judgment. They need Biblical Feminism that sees the heart, recognizes the shame, the pain and says, Those don’t define or confine you. You are loved. You are valuable .The way you were treated by man or other women is not WHO you are. Those are injustices that happened to you. Jesus offers forgiveness and compassion. He believes that you, dear sister were worth dying for. Go and live a life worthy of the value you possess.
*Just a note, the Christian feminism does not accept domestic abuse or false concepts of marriage. More about this subject in another post!