Outside Looking In
What is it really like to live with Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome, it also goes by ME/CFS for short, knowing that you will never get the chance to do all the things that you once did, and have the energy that you once had.
I’ve seen first-hand what kind of things it does to a person who suffers from ME/CFS. Although I am not a sufferer myself, I have had to stand by and watch someone close to me have her whole world be turned upside down. A young girl that had her hopes and dreams of becoming a professional dancer be snatched away. In a blink of an eye or a nanosecond, everything changed. From someone that was so energetic, that was into playing any kind of sports as well as dance, to someone that had no energy at all.
Dancing was in her blood from an early age, She was so active and vibrant that was so full of life, she loved being on stage doing her dance routine that she had learned that week. Her heart will always lie with dance as that has been a passion of hers, for a very long time. Everyone was always mesmerized from the moment she started to dance until the end of her routine. By the time she was leaving primary school, her teacher said that they would not be surprised to see her as a professional dancer in years to come, but that seems so long ago like it was someone else’s life. To be continued, Read our whole story, from the very beginning in ME/CFS Awareness Part 2.
When people hear the word ME/CFS they immediately think it’s an excuse for them to sleep, but they don’t realize that there is so much more to it than just being tired and wanting to sleep all the time. They don’t see everything else that comes with it, like nausea, constantly being in pain, intolerance to certain food and drink. The list is endless. It is a very complex condition that even now they are finding new symptoms that coincide with one another, that all lead to ME/CFS.
Extreme tiredness is the main symptom for ME/CFS sufferers it is an extreme and debilitating fatigue, as well as generally feeling unwell, It is a physical and mental tiredness, that does not go away with rest or sleep, but that is only the start of it, as there is so much to it than being just tired…
Most ME/CFS sufferers say that the fatigue is an overwhelming tiredness and, that they have not ever experienced this type of tiredness before.
Symptoms of ME/CFS:
These are only but a few of the symptoms, there are so many more parts to ME/CFS.
- Fatigue, drained, exhausted
- Sleep deprivation, such as Insomnia.
- Brain Fog.
- Feels weak and vulnerable.
- Muscle and joint pain.
- Memory problems; such as thinking, remembering or concentrating.
- A sore throat or sore glands that are not swollen.
- Flu-like symptoms, that won’t go away.
- Heart Palpitations, fast and irregular heartbeats.
- Feels dizzy and/or nausea, some cases actually being sick.
- Post-exertional malaise.
- Intolerance to alcohol, exercise, and certain foods.
- and so many more.
What Not To Say:
What you should never say to someone that is dealing with a chronic illness if you don’t understand what it is and you know someone that is going through ME/CFS, or any type of chronic illness just ask they would be more than happy to tell you what they are dealing with, and how it affects them.
There is not enough known or even done regarding sufferers of ME/CFS. It is still so misunderstood and underrated. The medical profession is still finding it difficult to comprehend it. Some say this condition has been going around since the days of Florence Nightingale, and Charles Darwin if that’s true, how come they still don’t know nothing about giving treatment to ME/CFS or general help, instead of, your left alone to fight this battle alone.
There is an ignorance surrounding ME/CFS as it is pushed aside, just because nobody understands it. It needs to be taken seriously. I have written this to say it is a real illness and it needs to be acknowledged. The medical profession needs to be educated about this so that they won’t ignore patients when they go to them for help.
Don’t forget the second part comes next week. Sending all my love and support to all the ME/CFS sufferers out there.