From The Huffington Post, 12 May 2016. Words by Natasha Hinde.
It's estimated that around 250,000 people in Britain are affected by ME, yet many people are still unaware of what it actually is.
ME, or Chronic Fatigue Syndrome (CFS), is a debilitating illness which affects people of all ages. It can cause severe fatigue, painful muscles and joints, disrupted sleep and poor memory.
The condition can affect lives “drastically”. In young people, schooling and higher education can be severely disrupted. Meanwhile for those of a working age, employment can become virtually impossible.
The ME Association website notes that: “Social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years.”
As part of ME Awareness Week, here are ten important things people with the condition want you to know.
1) It affects your day-to-day life, severely.
“I describe it as my body being like a dodgy phone battery,” says freelance writer, Kayleigh Bell.
“It drains a lot faster than everyone else's, and even if I charge it multiple times a day it still ends up flat. No amount of sleep feels refreshing and on bad days I ache all over.
“I feel dizzy and light-headed, and struggle to even focus on watching TV. As a bookworm and freelance writer one of the most devastating effects on my life has been my inability to concentrate.”
She adds that her short-term memory is “worse than your Nan's after a few brandies”.
“It's a battle to pick even a commonplace word out of the alphabet spaghetti soup inside my brain.”
2) It's relentless.
Imagine a hamster wheel of exhaustion – that's ME.
Blogging on HuffPost UK, Penelope Friday writes: “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.”
3) It can affect anyone.
Stephen Tudor was diagnosed with ME in 2000. He says that back then, it was a “woefully misunderstood condition that only seemed to strike middle-class teens called Rachel or Isabelle”. Additionally, its existence was “actively disbelieved by many”.
Blogging on HuffPost UK, he adds: “From being a normal lad who went out clubbing, drinking, watching City and failing hopelessly with girls, I now found myself waking each morning with red stinging eyes as if I'd been up for three days straight.
“My head would be swirling with a thick pea soup that Jack the Ripper could run amok in while my legs were aflame with agony.
“I barely had enough strength to lift a brew and generally felt like I'd gone ten rounds with Carl Froch after calling his girlfriend a minger. All this struck each and every day in the first few minutes of consciousness and it usually went downhill fast from there.”
4) It affects relationships and social life.
“These days I'm best mates with my dog,” writes Kayleigh Bell.
“I don't get out much and try to reserve my energy to go to yoga classes a couple of times a week.”
5) No two cases are the same.
Kayleigh Bell writes: “I'm very aware that even my limited amount of activity is a luxury that many ME sufferers can only dream of.
“Every case of ME is different; no two people have the same experience. Some people recover completely, others deteriorate consistently, but most dance back and forth with relapses and periods of improvement for their whole lives.”
6) Like many other conditions, it fluctuates.
Penelope Friday writes that many people don't understand that ME, like a number of other illnesses, fluctuates.
“You don't have the same amount of energy every day,” she says. “Equally, maybe last week I decided that doing the supermarket shop would be my Big Thing for the week, and chose to use my energy on that.
“But this week, my son's got a music exam, or I've got a doctor's appointment so I have to deal with that instead.”
7) It's not “nice” being unable to work.
“Some days the guilt is crippling,” writes Bell. “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.
“People comment on how it must be nice to not work. I have to resist the urge to cause them an injury.
“Enduring ME is mind-numbingly, scratch-out-your-eyes, scream-into-pillow boring. Having an ‘invisible' illness means that even those closest to me often struggle to accept that I'm too exhausted to get out of bed some days.”
8) Even if someone with ME looks “fine”, they might not feel it.
“The hardest part of having ME at my level is that you feel dreadful but look fine,” writes Laura Roche in a blog on HuffPost UK.
“Unless you become a chronic illness bore and constantly regale people with tales of bodily woes, it's difficult to explain to people why you can't do everything you want and need to do. It's even more difficult to explain why you can't do everything THEY want and need you to do.”
9) There are small workarounds to help make life easier.
Blogging on HuffPost, Professor Norma Cook Everist reveals how she manages to hold down a job in lecturing while living with the illness, which she was diagnosed with 30 years ago: “Daily life requires discipline, structure, and organisation.
“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. While most people can go over their limits, I simply cannot or will have a relapse for a week or six months.”
10) You can still have fun with ME.
Laura Roche says that while life is different after being diagnosed with the illness, you can still have fun with it.
“It's not as easy and you might have to re-define what fun means, but fun is out there if you look for it,” she writes.
“My pre-ME methods of fun included dance, long walks and endless socialising. Now I enjoy watching dance clips on YouTube and chat with friends online or through emails.”
Roche adds that while she might not be able to walk in the park and look at nature every day, she can “grow plants and look at those instead”.
“I'm currently having a lot of fun trying to get my new Amaryllis plant to grow in a perfectly straight vertical line,” she says.
“ME might consume my body, but it doesn't consume my mind or my life!”