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.

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