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.
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.
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.
- 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.
- 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.