From Huffington Post Lifestyle, 12 May 2015.
It’s ME Awareness Week: Here’s What Living With ME Is Actually Like
by KAYLEIGH BELL, freelance writer and copywriter
This week is ME/CFS Awareness Week, and if there is one thing people like me need more of, it’s some bloody understanding. My life wasn’t always like this. At 16 I caught Glandular Fever and ended up in hospital. It really hit me hard and a full recovery never happened. In hindsight doctors have explained that this is when the ME developed. I went undiagnosed for ten years, struggling through university and into the working world. I was treated for anxiety and depression, and the physical symptoms I suffered were assumed to be manifestations of mental illness.
Finally, last summer, I crashed in a most spectacular way and became completely incapacitated with exhaustion and anxiety. It had been building for months and I had pushed through until one day I came undone. I had no choice but to give up my job and focus all my energy on trying to find out what was wrong with me. Last November, with help from a sympathetic GP, I was finally diagnosed with ME and it felt like a victory. I am slowly learning about my condition and my body’s limits. I feel vindicated from the deep-rooted fears that I am a lesser human being than the people around me.
Not many people know what ME is. Those who have heard of it often explain it as ‘being really tired all the time’. Would you believe me if I told you that over 250,000 people in UK alone suffer from ME? Or that two thirds of those sufferers are female and aged between 20-40 years old?
ME stands for Myalgic Encephalomyelitis, and is also known as Chronic Fatigue Syndrome (CFS). It is a chronic, neurological illness that mainly effects the nervous and immune systems. The symptoms include severely debilitating fatigue, painful joints and muscles, disordered sleep, cognitive impairment, irritable bowel syndrome, hypersensitivity to light and sound, and post-exertional malaise. There’s no known cure, very few treatments and little is known about the causes. Bit of a downer, eh?
Cold, medical language does little to paint a picture of what it’s like to live with ME. I describe it as my body being like a dodgy phone battery. 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. My 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.
It is soul destroying to have the drive and skills to achieve your goals but your body is holding you back. I’ve always been hard-working and ambitious, but I spent many years without a diagnosis convinced I was lazy, weak and batshit crazy. Don’t get me wrong, my mental health issues are very real in their own right, but I was never able to get a proper grip on them because of the physical condition going unaddressed.
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. 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.
These days I’m best mates with my dog. I don’t get out much and try to reserve my energy to go to yoga classes a couple of times a week. 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.
In true British fashion usually ‘I don’t like to make a fuss’. Nothing kills a conversation quicker than when you respond to ‘how are you’ with ‘physically and emotionally drained due to my chronic illness’. I’m positive about the future because the alternative is unthinkable. I have to believe that I’m going to get better and this is illness is just a hiatus from my twenties. In the meantime what would really make my life, and the life of others with ME, a lot easier would be greater public awareness of the illness.