Three Things Chronic Fatigue Taught Me

This week’s podcast is Living With Chronic Fatigue Syndrome. I’ll share my main points from the episode and the link to listen at the end of the article.

Recording the Podcast made me start thinking about some of the lessons I’ve learned through having Chronic Fatigue Syndrome. Maybe you have an autoimmune disease and you have never thought about the lessons you have learned because of or in spite of it. It’s interesting how God uses every circumstance to teach us a lesson or two, if we let Him.

  1. I am not infinite. 

This may sound kind of silly. Not really. I used to act as if my energy was infinite. I did everything. Joined everything. Served in every capacity I could. Then CFS hit and I couldn’t do any of it. When I began learning how to manage my symptoms a little bit at a time- such as get out of bed, function for a few hours, then moved on to having hours of energy each day and so forth. When I got back to the point that I could function all day and workout, my mindset instantly went back to the infinite energy belief. So, I crashed. Until I came to really embrace the belief that my energy is finite, I couldn’t move forward and enjoy my life. It’s like a bank account, I can’t spend what I don’t have. If I do try to spend it, I’m bankrupting myself for days, weeks or months. If I stay with in my budgeted energy allowance, I feel better, I rest better and I recuperate from major events quicker. If I stay within my boundaries, life is so much more enjoyable.

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2. When I choose to do an activity, I’m choosing not to do another.

This sounds a lot like the first lesson, but it is a bit different. I have choices. I don’t have to do it all and neither do you. This pressure to be all, be there, serve on every committee and be in every ministry is just pressure. Everyone is going to ask you to do things. It’s what people do. If you have an autoimmune disease and you show up at a meeting, event or church and look human, people are going to ask you to ______________(fill in the blank). Even if you have told them about your disease, you probably look normal or some people say “you don’t look sick to me.” You know as well as I do, you can’t see an autoimmune disease. You could get it printed on a tee. That might help. So, there you and I are at the event, looking normal and we get asked. The truth is – those people don’t see your aftermath. They don’t know it took every ounce of your energy to show up. They don’t know that when you get home, you crash. What can we do? Choose wisely. Don’t go to events, gatherings or  _____________ (fill in the blank) that are going to use all of your energy especially if you know in your heart of hearts, you will be asked to do something else just because you showed up. Preaching to myself here.

 

3. You cannot do it all, so choose one thing and do it well.

In the lowest points of my disease, doing one thing well was sitting up in bed and reading to my children. As I better learned to manage my symptoms and started gaining a bit of energy, I wanted to “do it all” again. I couldn’t. Trying to just made me end up in bed or feeling as if my body was stuck in quicksand all the time. When I took my plate and scraped all the activity off of it, I felt relieved. I felt space to breathe. For a long time, I didn’t add anything to it. I just enjoyed being. Being alive. I wrote my lists of things I was grateful for. I sat on the porch and looked out the window. I didn’t venture far from home. If I had a short trip out, then I planned to rest for the rest of the day. When I finally felt as if I could do something, I knew it had to fit into my new normal. I prayed. I cried. I grieved my old life and then was ready to enter a new one. I had always wanted to write. Here was my opportunity. It took me twelve years to write my first book amid raising kiddos and homeschooling. I could only work on it in tiny, bite sized pieces. I know now that God was setting me up to thrive in my new normal. Writing is something that fits. I can write from my home. I don’t have to use my energy envelope traveling to a job. If I’m not having a great day physically, I can take a day off. Isn’t it amazing how God makes a way when there seems to be no way? When I thought my life had shrunk to the four walls of my home, God whispered three words to me – write, write, write. So, I write and I’m grateful to live in a time with technology and I can write this at home and you can read it wherever you are.

I don’t know what your autoimmune journey has been like or what lessons it has taught you. I’ve learned many more, but I think this is a good starting point for conversation. What have you learned? Do you still revert to old mindsets and believe your energy is infinite when you have a “good” day? Do you try to choose it all to please them all (whoever they are)? Share your comments and stories! I’d love to hear them.


Show Notes

  1. Accept your now. That means don’t try to fit your life, your now into what everyone else is doing. If you only have one or two good energy hours a day, don’t spend it doing things that are not a priority. For me that meant outside commitments, church or otherwise.
  2. Hang on to hope. If you don’t have hope.

 Now faith is the substance of things hoped for, the evidence of things not seen.- Hebrews 11: 1

Faith is substance. It’s matter. That means we have to hope that our matter changes. With CFS, it is super easy to fall into depression. It’s circumstantial, yes, but it can become a habit.  When you lose hope, you lose your will to live. Been there. Done that.

3. God will give you something you can do despite your weakness. Paul speaks of this. He asked for the thorn in his side to be removed 3 times. I have asked about 300,000 times. I still have it. Sometimes it bothers me. Sometimes I let it fester.

 

Concerning this thing I pleaded with the Lord three times that it might depart from me. 9 And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.- II Corinthians 12: 8-9

4. If I’m silent, if I disappear, I’m probably suffering. Not ignoring you.

5. There comes a point in every relationship when I have to tell people I have CFS. Often people just think I’m uncommitted. Or lazy. Or pick and choose what I want to do. It’s not true.

6. When you get to a level of management that makes you feel good most days, don’t add something to your plate. You will regret it. Keep some energy left over at the end of the day.

  • 7. Wake up at the same time.
  • Go to bed at the same time. Make it early.
  • Read to calm down, don’t watch a screen.
  • Exercise to the point that you don’t feel worse the day after.
  • Find an exercise that works for you and build incrementally. Don’t go out for a run because you feel great one day (if you don’t run on a regular basis).
  • Eat as many whole foods as you can every day.
  • Keep the same schedule as much as possible, this avoids decision fatigue and helps navigate brain fog.

Episode 60

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Three Post Crash Practices That Help CFS Recovery Part Two

Last week I began this series, Three Post Crash Practices, today I’d like to focus on number two.

When I came out of my last major crash and the fog began to lift, I did a lot of research on recovery. CFS is a strange disease. It has cycles and the best way get into a different cycle is to change a habit. It starts with one small habit at at time. Let’s say for months, I couldn’t get up earlier than nine am. One week, I push it back to eight and form some early morning routines every day. Get up. Take meds with water. Make coffee. This routine sounds simple. It is. Over the period of a few weeks, my body expects me to get up at eight and go through the routine. It becomes easy.

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2. Use a schedule. I read articles and printed off worksheets detailing how to schedule a day. There are some great ones here. At first, I was overwhelmed. Some of it I thought was ridiculous. Practices such as writing down my pain score. Fog score. Duration of activity. Those sorts of things seemed overboard. I don’t think that anymore. After practicing keeping score of activity, energy levels and pain, I found patterns. I found what sorts of things sent me to a crash quicker. If the worksheets seem overwhelming, just grab your calendar. Write down your pain score every day. Between one and ten works well. Your energy level too. Brain fog too. Make sure you write down everything you do. Vacuum. Read. Write. Company. Etc…

I plan out my activities, exercise, outings and rest days. When I first came out of a major crash, I needed a day or two of rest after an outing for coffee or going to the store. Once I recovered a bit more, a trip to IKEA for the day took me a week to recover from. This is because of the three hours of car time. These are just a few examples. It took time and discipline to figure out my patterns.

Sometimes, even now, I have an outing with a friend planned and I must reschedule because I have crash-like symptoms. To push through symptoms results in a crash. I have tested this theory only to have to leave an event or leave the zoo because I almost passed out (true story).

Rest a day ahead of an event and plan to have lots of margin in your days a few days after. All of this depends on your stage of recovery. For me, coming out of a major crash meant a nap every day. After an event it meant sitting and reading. Rest didn’t come easy to me. It was foreign. A few of my kids got me an Eno hammock to string up in the yard. I can climb in and close my eyes or gaze up into the tree tops. Rest is something I am learning to do. To Be. Instead To Do.

Whatever rest is for you, it should involve two parts-rest for the mind and for the body. The interesting personality trait I find in CFSers is they were always people who never rested. I was in an IV room once receiving treatment for CFS. In the chair next to me was a math professor. His eyes were closed as he received his infusion. I spoke briefly with his wife about his busy schedule and his unwillingness to shut down. I asked Dr. P. if anyone had ever studied how many type A personalities suffered from CFS. The point is, CFSers are far from lazy. They are quite the opposite.

Schedule is your friend. Your body craves schedule and gets used to doing the same thing at the same time every day. Muscle memory takes over and it takes less energy to do the same thing. If you find yourself sitting in bed all day post crash, your body will expect it. If you start adding a little more each week, your body will adjust. If you go out and do everything the first day you feel normal, you will crash(see practice one). So pull out your schedule and get started, one baby step at a time!

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.

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!