M.E. Awareness Week | The Origin of Sleeping Beauty.

Hello lovely readers, it is officially International M.E. Awareness Day. As I said in my prior post yesterday, I will be talking about a different symptom and how I personally manage it in daily entries this entire week. Since it is the international awareness I couldn’t think of anything more fitting than the primary trait of Myalgic Encephalomyelitis: Sleep.


Sleep is the first and foremost trait of Myalgic Encephalomyelitis. For months previous to the triggering, I noticed that I was sleeping an increasingly large amount. It came to the point that I would be dead to the world for almost twenty-four hours. I deduced that it was a result of stress from the workload I had and it wasn’t until I became ill in January of 2011 that I knew something wasn’t right.

I was barely conscious for more than an hour a day and in that time of consciousness; I couldn’t deal with neither light nor sound. Interaction with others was impossible as I was plagued with this overpowering fatigue and lethargic. When my parents finally took me to the doctor, it took three months to be diagnosed. Throughout those three months, I was nothing but a lifeless vessel in deep slumber. If it were a competition between every Brothers Grimm comatose protagonist and me, I would have won effortlessly.

It’s been established that sleep induced by Myalgic Encephalomyelitis is a different form to healthy sleep that everyone usually receives. It answers the question to why I’m unrefreshed by sleep and overwhelmed with the need to hit the hay all the time. It’s dead sleep. It’s unbeneficial to my health.

The sleep has affected my physical appearance in result of it. The cruel trick of this sleep is that I look as though I haven’t slept for a month. I thank concealer and eye cream for their successful disguising of the black suitcases that lay beneath my eyes.

Myalgic Encephalomyelitis is like a series of rounds; when one round of opponents is obliterated, there is another level of different challengers to conquer. It’s the equivalent to a checklist. As I tick one thing off, I will be faced with another.

Sleep is the among the hardest of obstacles with living with M.E.. It affected my sight and who I was. In order to recover that little bit more, I had to gradually lower my sleeping time.

For the entirety of 2011, I could barely be left in solitude for I would be gone within seconds. There has been moments–even now–where I’ve fallen asleep in public with no such warning. The craving to sleep is dependable on whether I’m “booming or busting;” if I’m booming, the need to mild but if I’m busting, it is excruciatingly ever present.

I first got help for controlling my sleep when I began therapy with M.E. specialist, A. He made me begin writing a daily Activity Sheet. An activity sheet is a log detailing in simple terms (using coded colour pens) how much energy I was using and what I was using it for.

Energy management is essential to coping with Myalgic Encephalomyelitis. It is incredible what takes up energy and what doesn’t. All energy is classified at different levels:
  • High Energy (e.g. walking and running, brushing hair, engaged television watching, work and anxiety)High energy would be coloured in a red pen.
  • Low Energy(e.g. unengaged television watching, preparation for something without actually doing it, chopping food)Low energy would be coloured in a yellow pen.
  • Deep Rest(e.g. meditation, deep breathing, use of structured relaxation techniques)Deep rest would be coloured in a green pen.
What this recording does is monitor if you’re having a good or bad day and see what and why this is so. After a month, I would see A and we’d carefully analyse and think of how I can improve in order to help myself from sleeping and to help myself in general.

To this day, I still use this method in one way or another because it works.

In the last three years, I’ve been able to chip away at the impediment of sleep and, although I still have my moments of lapse, I have come a very long way since the beginning, now sleeping a reasonable ten hours.

The irony of this? I spent my entire life prior never sleeping.
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Comments

  1. A wonderful and very personal post with an educating message Tammy. Well done. A big hug from me and the VoE ladies xx

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