Three Post Crash Practices That Help CFS Recovery Part One

“One day you’ll wake up and feel normal,” my doctor said. I was diagnosed with Chronic Fatigue Syndrome (CFS) in 2005. I didn’t believe him. I hadn’t felt normal physically for years. Every morning I felt as if I hand’t slept at all or worse, as if I had been up for thirty-six hours straight. My joints aches. My muscles felt as if I had run a 50K. And to top that off, the world was always foggy. I felt as is I were moving through quick sand instead of air. If I walked up the steps, I was out of breath, my muscles screamed for oxygen. Then one day, not out of the blue. One day, after months of following doctor’s orders, taking supplements, a strict diet with green smoothies and healthy whole foods (that’s another post), I woke up feeling normal.

I had dreamed about this feeling. I dreamt that I had gotten up and gone downstairs to make coffee. In the dream, I felt great. No aches. No pain. No brain fog. No exhaustion. Then I woke up. This time it was real. I felt okay. I couldn’t believe it. So, guess what I wanted to do? EVERYTHING. Clean the house. Write. Paint. Refinish a piece of furniture.

I was reminded of this feeling when friend and CFS sister texted me the other morning. t She awoke feeling normal after two years of the opposite. She was so excited, ready to get back to regular life, to pull her camera out, to edit photos. “Take it easy, don’t overdo it,” I said, “enjoy feeling well.”

It’s so durn tempting to conquer the world that first day of feeling ‘normal’  when coming out of a major crash. We Chronic Fatigue suffers can spend years sitting on the sidelines watching people do normal stuff such as cleaning their houses, going out for coffee, going to church, painting, writing or fill in the blank. Often, in the middle of the crash, I wanted to hit people over the head with a rubber mallet and say, “don’t complain about having to do normal stuff! Enjoy it.” Post major crash, I am more thankful. When I can go out with my sister for coffee, I write it about it in my journal and put it on my thankful list. I also keep track of my activity to avert another crash. It’s so tempting to run forward at break neck speed on the first normal feeling day. Don’t. Just don’t. You will pay the piper later.

CFS

  1. Keep some energy in the tank. Last month, I rented a RAV4 to drive to visit my brother and family. Brother Jess and I drove the RAV4 to downtown Charleston, S.C. to do some sight seeing on foot. Neither of us payed any attention to the gas gauge. We were more focused finding parking and then the time on the meter. When we got back to the car (with six minutes to spare) to leave the city, the car began a loud annoying beep. Turns out, we were dangerously low on fuel and this was the cars way of telling us. It beeped until we found a gas station. When you have CFS, often your body is beeping loudly and if you are like me, you ignore it, at least until you wise up. Then comes the crash. The body is so out of fuel, it can’t move forward. It sometimes takes days for our bodies to recycle or produce energy while non CFSers can do it in hours. So, we can’t drain the tank. We have to keep some energy. Think of it as refilling your tank as soon as it gets down to a fourth. I love Christine Miserandino’s explanation of this in the Spoon Theory. I recommend you read it and keep in mind, at the end of the day, you should have a few spoons left. It’s like keeping a bit of gas in the tank. If you don’t, you may wake the next morning feeling depleted. What does this look like? Sit down and rest when you aren’t exhausted. It’s 8:00pm and you still have a load of laundry to fold or some other tasks. You feel okay. Don’t do them. Sit down and rest. Rest when you aren’t exhausted. Weird. I know.

This past week, I ignored my own advice. I didn’t keep any energy in the tank. I drained it and dipped into the next day’s supply. I’ve been busy, getting up between five and six to write, filling the rest of my day with activity and exercise. I had a mini crash the other day. I felt dizzy, foggy and boom, I hit that brick wall. When this happens, I have to rest and usually take a day or two off of exercise (it used to be a week). I pull out my calendar and go over it. I make it a habit to write down everything I do, including exercise. This helps me assess where I need to cut back. Which leads into the second practice I will share on Monday.

From Older Moms to Younger Moms- Three Things We Need from YOU

*This post was spring boarded from a post by Jessica Bolyard. You can find it here. 

My children aren’t small anymore. There was a season when I had seven children at home. It seemed as if it would last forever. There were meals to prepare. Diapers to change for years on end. The dishwasher/washer/dryer needed unloaded constantly. Kids were fighting. I couldn’t see the end in sight.

Other days, the sun shone. The children got along for a few hours or a child had a breakthrough in learning and I was there to see it. Or we made cookies and watched a movie. We stayed up late and watched the moon. I prayed those days would never end.

They did end. Kiddos grow up. Go to college. Get jobs. Get married. And we Moms enter a new season. Every season has merit. Every season has value. When Mamas enter the phase of life when the kiddos are not so little, things change. Drastically.  We enter a new phase of our lives. We become the mentors. It’s biblical. I like that.

 Older women similarly are to be reverent in their behavior, not malicious gossips nor addicted to much wine, teaching what is right and good, so that they may encourage the young women to tenderly love their husbands and their children, to be sensible, pure, makers of a home [where God is honored], good-natured, being subject to their own husbands, so that the word of God will not be dishonored.-Titus 2:3-5

I shared Rachel’s post above. When our kids aren’t little anymore, what we need from you who have littles:

  1. Listen to the wisdom that we share that is biblical and sound whether we can use Twitter or understand Tumblr. Knowledge of social media or lack thereof is not a measure of wisdom. Some of the ladies you need to hear from don’t Facebook or tweet. You’ll have to meet them for coffee ( I do social media but prefer real time coffee). We may not be able to see the pain in a tweet or post. We grew up seeing facial expressions, not reading emojis. When we say, WHAT? We mean we don’t get it. Don’t think we don’t have the wisdom or experience to meet you where you are if we don’t know how to tweet an answer in the characters allotted.
  2. Don’t discount our advice because our older children have chosen alternative lifestyles or left the church. Our wisdom and experience combined may help you. These are our children’s choices. Not ours. Your children will make their own choices one day. You probably don’t like all the choices they make now, but it seems so much more controllable when kids are small. When they are grown, be prepared to find a listening ear when your kids choose things you wish they hadn’t. Get your shoes of peace on. Apply liberal amounts of grace and keep the relationship going.
  3. Ask us. You may be surprised by our willingness to share. Just because we look as if we have it all together (myself excluded) doesn’t mean we haven’t had hardships along the way. We each have a story. When we tell them, healing springs forth for the listener and the story teller. We can’t step into your home and tell you how to run your household unless we are invited into your lives. We can’t tell you how to love your husbands unless you ask. If you’re asking the young mom at the soccer field what to do or finding your answers on social media, you may not be getting the wisdom you need. It’s not that these women don’t have some answers, they don’t have years of experience to draw from.

Younger moms, we are here for you. You aren’t alone. No, your season won’t last forever, but that doesn’t make some days feel like forever. I get it. Some nights seemed as if they lasted an eternity when babies were sick and couldn’t sleep. Those moments when everyone got a long for a few hours were glorious. I didn’t think the season of raising children would ever end. Now, I’m in a new season, trying to find my way around. I haven’t forgotten you, young Moms. I’m just a text or phone call away. Don’t expect me to have all the answers. I don’t. What I do have is a listening ear, experience and a prayer.

 

My Chronic Fatigue Syndrome Journey and Exercise (abridged)

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Lori and I brave the cold and dark to get in five miles.

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.

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Lori 1, Lori 2 and I meet at the stadium to walk/run five miles.

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.

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CASA Super Hero 5k (April 29th)  Fun time!

  1. 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.

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    Lori and I conquer the city at the CASA Superhero 5K.

  2. 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.

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    Lori, my sister Anne and I survived  conquered another PiYo live class!

  3. 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.
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    Lori, my daughter Ania and I

    *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.

My CFS Journey (abridged)

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!

 

 

 

Co-regulation & Self Regulation

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?

  1. Food and water every two hours
  2. Ask him, “What do you need?” instead of “What’s wrong?”
  3. Give him words if he has none.
  4. Ask questions that activate the upstairs brain.
  5. 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!

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