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!