Sunday, 23 September 2012

Chronic Fatigue Syndrome: Sleep disorder, pain & fatigue

In the past few months I have regularly (about 5 times a week) been sleeping for 14 hours a day. For me this is quite normal as I have a sleep disorder which is part of my Chronic Fatigue Syndrome.

Chronic Fatigue Syndrome is not a widely recognised disorder which results in (to name a few symptoms) constant muscle & joint pain, and low energy levels which can often result in immense tiredness from doing normal tasks such as washing the dishes or doing the laundry.

You would think that sleeping for 14 hours would result in the person having ample energy to bounce off the walls for the remaining 10 hours of the day, this is where you would be mistaken.

How I describe the tiredness of a CFS Sufferer.

The best way to describe the tiredness and low energy factors of Chronic Fatigue Syndrome (CFS) is:
A normal person's battery is fully charged after 6 hours sleep.
A person with CFS (Chronic Fatigue Syndrome)'s batter is never more than half full.

So no matter how long you do sleep with Chronic Fatigue Syndrome you will still be tired and throughout the day the tiredness will only get worse. The only way to cope with this is to understand how much you can do in a day before hitting the "fatigue barrier" and having to go to sleep again.

Tiredness of a CFS sufferer can be made worse from both physical and mental exhaustion.

Whether I sleep for 2 hours or 14 hours I feel just as tired.

Limitations of normal activities for a Chronic Fatigue Syndrome sufferer.

From my own personal experience the following normal daily tasks cause me to loose energy very quickly and I have to rest for several hours after doing so. (i must add at this point that I cannot work due to my illness and this is advised by my doctor) When I personally loose energy, the only way I can explain it is if I do too much I hit a wall of fatigue, I can pass out and sleep anywhere, however once I have hit this fatigue barrier, my other symptoms start worsening, my joints, muscles and will feel like they are clamped into a vice and its just agony, when this happens I would be lucky if I can still walk due to the sheer pain of it all. Additionally I have issues with even my skin, where I get either hypersensitivity where it is so painful when certain areas (these areas move) are even lightly touched. And then there is the under-sensitivity which can sometimes also happen where the skin goes numb to the touch.

Things I cannot do:

  • Work
  • Go for a walk
  • Go for a jog
  • Go out socially
  • Drive
  • Exercise of any form
  • Lifting / moving medium -> heavy objects
  • The cooking

Things I can do over several hours

  • The dishes
  • The laundry
  • Cleaning one room of the house
  • Sweeping, Mopping, Hoovering

General understanding of Chronic Fatigue Syndrome 

(view of a normal person)

Peoples understanding of Chronic Fatigue Syndrome and how it effects people is severely limited and many times not understandable unless you have it yourself. My friends do not understand why I cannot go out often anymore and don't understand why I sleep so much, or say I cant do something because I'm too tired or sore. Even the government do not understand the situation most of the time. If you have CFS you might be able to do a "normal" day one day but for the rest of the week and most of the following week if you have CFS - you will most likely be in bed due to the agonising pain, and relentless fatigue. Its a very limiting illness and very frustrating to live with. 

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