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.

schedule

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!

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6 thoughts on “Three Post Crash Practices That Help CFS Recovery Part Two

    1. Thank you. Feeling pretty great most of the time as long as I schedule regular rest. I think this post is for everyone, like you said. A schedule also helps us see what we have accomplished! Thanks for the comment!

  1. your story is interesting, i,m all for schedules and routines but some cfs sites say its good to do “different things”, to keep your mind active and stop you from getting bored. so im a little confused, ???

    1. I suppose it depends on your personality and level of crash. When I am recovering from a crash and have brain fog, a schedule does the thinking for me. It’s less stress on the brain and body.

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