ME – also known as Chronic Fatigue Syndrome (CFS) – is a debilitating condition that causes severe fatigue, sleep problems, poor memory and painful muscles and joints.
People of all ages can develop the ME illness which affects every aspect of their daily lives. For those in school, keeping up with lessens and homework can be a constant struggle, while those of working age may find it impossible to commit to employment.
Keep reading in order to better understand ME, and what it is like for those living with the condition.
ME is relentless
There are good days and bad days when it comes to ME, but the symptoms are relentless. Chronic fatigue is overwhelming and much more severe than standard fatigue. Many sufferers describe symptoms as flu-like.
Penelope Friday, an ME sufferer and blogger for the Huffington Post explains:
“On a bad day, it’s like when you wake up with full-blown flu: your entire body aches and there’s no way that you feel capable of doing anything at all.
“On a better day, it’s more like the day where you are just feeling a bit better after having flu, but by the time you get up and get dressed, you realise that this has made you so tired you need to go back to bed again.”
No two cases are the same
The severity of ME can be divided roughly into three categories:
Mild – It is possible to get up and do basic tasks, but these may take a long time due to the difficulty. Weekends or days off from work are often needed for rest and recuperation.
Moderate – Significantly reduced mobility. Most activities involved in daily living are off limits. Symptoms may peak at various times of day and sleep will be very difficult.
Severe – Mobility is severely restricted and only minimal daily tasks can be completed, such as going to the toilet. Mental ability such as concentration is reduced and sufferers tend to spend a lot of time in bed.
It can feel like a burden
Living with ME not only takes a toll on the sufferer, but also their friends and family. Kayleigh Bell, an ME sufferer explains:
“Some days the guilt is crippling. I feel like I’m a burden to my loved ones and not contributing anything to the world. I can see my life and my youth wasting away as I sit useless on the sofa.”
Daily life requires strict discipline
For sufferers with full time jobs and duties at home, sticking to a routine is key to managing their ME and working in tune with peaks and troughs.
Professor Norma Cook Everist is a lecturer and was diagnosed with ME 30 years ago.
“Daily life requires discipline, structure, and organisation,” she explains. “For example, my best time of the day is 5 a.m. I would teach then, but students probably would not come, so I use that time for writing.
“I have a hard time walking or talking in the evenings. Time with energy is precious, so I measure it carefully.”