ME/CFS Week: Awareness Day

Happy ME/CFS Awareness Day!

To celebrate, I will be trying to post every day this week about the varying aspects of ME/CFS. Today, however, I will just start with an introduction. This is not the most sun-shiny post in the world and I'd be lying if I said I wasn't afraid of people thinking I'm looking for attention, but this is important. I am a happy person with a really great life but this illness tries to take that away every single day. I won't let it - not because I'm amazingly strong, but because I can't. I don't need a medal for living my life, but please try to understand this aspect of it.

What does ME/CFS mean?

ME stands for Myalgic Encephalomyelitis, CFS stands for Chronic Fatigue Syndrome. They are two names for the same illness¹, which is known as one of the 'invisible illnesses'.

What is an 'invisible illness'?

Invisible illnesses are ones that show no outward symptoms. Basically you look entirely healthy but you could
be suffering from extreme exhaustion, pain or other internal symptoms. Other examples of invisible illnesses include Fibromyalgia, Cystic Fibrosis, and Multiple Sclerosis.

Ok, so what is ME/CFS then?

ME/CFS is an autoimmune disease. It makes you tired, that's kind of a given from the whole 'Chronic Fatigue Syndrome' bit. Unfortunately it seems that most people who've heard about it are usually under the impression that that's the only symptom. The truth is it's not. It's not even close.
When you have ME/CFS your energy will never get higher than about 8/10, and is rarely higher than a 6/10. As many of you will know from school/college/work, it can be really hard to concentrate and function like that - let alone attempt physical activity. People with this disease often end up sleeping 16-20 hours a day which, you know, kind cuts into productivity.
Additionally there's a sort of 'brain fog' that comes with the illness. Kind of like those days when you're just moving at a snail's pace, you can't quite think and concentration is out of the question. Everyone has these days occasionally, but with ME/CFS this is your permanent mental state. It makes reading, memory and any sort of academia almost impossible.
Muscle and joint pain are also part of this fun package, usually coupled with muscle weakness. Some are lucky enough not to experience too much pain, as I was for the first couple of years, but even without it mobility is still difficult. With the pain on top of everything else sufferers are often left almost entirely bedridden for years.
As well as the big stuff, which I would classify as the main symptoms, there are many more bits and bobs which often are just inconveniences. Unfortunately these inconveniences are the bits that make day-to-day life incredibly difficult. These include: unrefreshing sleep, trouble sleeping, night sweats and chills, headaches, sore throat, dizziness and balance issues and increased sensivity (particularly when it comes to eyes, ears and skin).


That's all for now, just be aware! There'll be more tomorrow, and remember:

¹ Some specialists will define them as different illnesses, but at the end of the day it's more of a terminology thing than anything else.