Creating With Chronic Illness

by Aiyla Beau

Before I get stuck into my personal journey, I first want to break down what chronic illness is and specifically what my chronic illness is. The definition of chronic illness is a health condition or disease that is persistent or long lasting, the term chronic is normally applied when a condition lasts longer than 3 months. The condition I have is Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (M.E./CFS for short).

CFS is defined as a condition that causes extreme tiredness (fatigue) and a range of other symptoms, which normally include: dizziness, brain fog (cognitive dysfunction), head/muscle/joint aches, sore throat/glands/sinuses, light and sound sensitivity, heavy limbs/weakness, post exertion malaise (a fancy way of saying when you do too much it gets worse) and sleep dysfunction.

Put simply it feels like having a horrible cold or flu, and a stinking hangover at the same time... but that feeling never fully goes away. There are various levels of this illness, for some it's manageable and after a while you can live a pretty normal life, for some it can be devastating, to the point where getting up and brushing your teeth is all you can do in a day, if you can do that at all.  Due to the way in which the condition manifests itself, and the fact that doctors to this day still don’t really fully understand what causes it, it's often misdiagnosed and for a long time wasn’t even considered “real” with many patients being diagnosed with psychological disorders instead. The latest theories state that it is a neurological dysfunction that means your immune system attacks various systems. 

Most people develop ME/CFS after a viral infection. This is what happened to me, and during my diagnosis, my doctor explained how ME/CFS works from a neurological standpoint, which has helped me to come to terms with it massively. SO, time for a lil’ science lesson!

When a virus enters your body, your brain sends out warning signals, like an alarm. These alarms cause the symptoms that you have when you're sick, so you'll get a headache, a sore throat, bunged up nose, lethargy etc... You'll feel like shit! Feeling like this makes you rest, which lets your body fight the virus. Once your immune system has flushed out the virus, the alarm system is switched off and you go back to feeling fine again. In some people however, that alarm system doesn’t switch off, it remains on even though the virus is long gone. These people have developed ME/CFS, and will keep feeling their symptoms, in most cases for the rest of their lives.

As you can imagine this can mean that living a “normal” life can become very difficult indeed! Many end up losing their