[dropcap]I[/dropcap]t´s fairly fitting that I am writing my first “physical aspect” post on this site, while feeling like every ounce of energy has left my body, and I have to rest several times during the day just to get the energy to write this. With certain forms of C.P like SD, there is a few added “after effects” of the condition which can often be overlooked or maybe attributed to other factors. One of these is the energy usage. A person with C.P expends more energy than a person without C.P on physical tasks, [1] it is no wonder then, that struggling with tiredness and fatigue is fairly normal.

Growing up I wasn´t really told much about this side of the C.P, of course I noticed I became tired faster than the others, but it was something that was fairly manageable and something I was quite used to. What I was not expecting however, was how much worse it became when I became older. About the time when I was well into the Norwegian equivalent of High School, it really started to take its toll on my body. I didn´t understand why I always felt tired, and why I had to take several naps each day just to have enough energy to finish my school work and other activities.

Sometimes I was so drained that I didn´t feel fully restored physically until a week later, and each task I thought of doing felt like an insurmountable task. During the weekends when it was at its worst all I did was stay in bed and relax. My doctor did not find anything wrong with me, but suggested I should take some days off from school and recharge my batteries. I did, and it seemed to work, but a month or so later it was back to the same thing, so I got my doctor to refer me to some experts in Norway on C.P and energy usage. They tracked my energy usage during normal household tasks and monitored my pulse and other things the entire day for a week or so. This is when I learned that i use about six times as much energy on any given task than other people (allthough I could not find any research on the exact ratio now), and I quickly understood the source of my fatigue.

The other challenging aspect of this side of the C.P was how to explain it to others, especially since I was sure that some people probably thought I was just lazy, or using it as an excuse to skip school. And I began to doubt myself and think that too sometimes before the medical experts reassured me. After this, I became increasingly aware of the signs my body was constantly sending out, and knew when to take a break before it got too bad. Today I think of my body kind of like a rubber band, I can stretch it pretty far, and the more I stretch, the more it starts to tell me i should release the pressure and relax or it will snap. And if i push it too hard, it “snaps” temporarily and it may take me some time before I get back to 100% again.

The other time in my life when this was challenging was when I started working. In the beginning i started out full time, but quickly realized that was way too much, as the only thing I did after work was sleep and eat, which in turn got me feeling pretty down. So I eventually landed on working 50%, which turned out to be a manageable amount at my job at the time (I worked in IT). But it heavily depends on the work you do, because now, I am a co-founder of a business and work way more in terms of hours than my previous job, however, since I mostly program and sit in front of the computer all day, I also conserve a lot of my energy for when I get off work, so I seldom feel completely exhausted. But there are periods like now, where a lot of work will still take it´s toll, that’s why its so important to listen to your body and its signals, and not feel ashamed or lazy because you need to take breaks!

Here are my four tips for preserving your energy but still be productive:

  1. Listen to your body! It will more than likely tell you some time in advance that you need to take a break and stop pushing too hard.
  2. Be aware of this and plan your work and day accordingly. Even though we should not let the C.P run our life, its a good idea to acknowledge it, and make adjustments so that you can live a happier life in general.
  3. Talk to your doctor, physiotherapist or ergonomics therapist about ways to be economic about your energy usage, there may be aids you can get to help you preserve energy!
  4. Don´t feel ashamed that you need to take a break and rest, even if others don´t need too!


1. http://ajcn.nutrition.org/content/92/2/313.abstract

Rubbing the eyes
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Running on Fumes – Energy, Fatigue and CP

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Do you have any experiences with this aspect of the CP? And if so, how do you deal with it? If you´re a parent, please feel free to share your observations about this aspect of the CP in the comments below too![/fusion_text][imageframe lightbox=”no” lightbox_image=”” style_type=”none” hover_type=”none” bordercolor=”” bordersize=”0px” borderradius=”0″ stylecolor=”” align=”none” link=”https://cpexperience.com/shop/” linktarget=”_self” animation_type=”0″ animation_direction=”down” animation_speed=”0.1″ hide_on_mobile=”no” class=”” id=””] [/imageframe]

4 Responses

  1. Thank you for your insight and tips on the CP/spasticity ‘Running on Fumes’ article. A half day of school sure would be the ideal for our 17 year old daughter. She is exhausted during the school year and any physical gains made during the summer are usually lost within the first 8 weeks of the school year. I like that you also addressed how your work day needs to be a reduced. Since our daughter is approaching college and then the work world we do think about how she will manage. Keep on writing! Every bit of this CP journey with our daughter is new territory for her and us parents.

    1. Thanks for commenting Linda! I´m glad you found this article useful. It´s an often difficult thing to find the right balance between listening to your body and the signals it sends and your desire to be “like everyone else!. I can relate to your daughter´s situation, as I went through the exact same thing at her age. But I think as she grows older and becomes more aware of this, and gets a job and workplace that takes her CP into consideration that she will master this side of the CP as well. 🙂

  2. I was very much the same but there were no half days of school for this kid, that was just the way things were back then.. I started work in a timber factory so I was using a heap of enery each and every day, no wonder I kept falling asleep on the toilet.. And as I aged I found fatigue just got worse and worse until I found a very good Neurologist that explained the energy I was using, and to find a deck job that I only worked 4 mornings a week and try to conserve my energy levels, with a good afternoon rest raiseum..
    Now at 54 I retired four years ago as my CP just won’t let me keep working, so now living on a Government supported income until I reach 65, New Zealand’s retirement age for a Government Pention ..
    Another issue I’ve also found is the pain factor as our bodies seem to age far more prematurely..
    Keep up the great work Alex – Mike

    1. Thanks so much for sharing your story Mike! I´m glad there is an increased awareness on this aspect of the CP now a days, but it is still an overlooked aspect, and not enough doctors etc mention it as a factor look out for. I hope you will enjoy your retirement as well, seems like you have earned it 🙂

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