M.E (Myalgic Encephalomyelitis) or 'CFS'
If I had to describe what it felt like, everyday is a twilight zone. Every second I am greeted with severe fatigue, fatigue that has been studied to be possibly equivalent to a cancer patient going through chemotherapy. Each of these seconds turn into minutes, minutes turn into hours, hours turn into days, days turn into weeks, weeks turn into months.
I don't know what day it is, what time it is, how I even got here in the first place. This is a war camp, except its my own body I'm battling. Mentally I try to keep calm, get through the storm I'll see the sun again, even if my own immune system is trying to kill me.
First I have to deal with the illness, second comes the depression, third comes the misunderstanding and not being believed from many around me. Fourth is the randomness of this insidious disease, maybe... I don't know, that I'll be hospitalised because my kidney decides not to work on Tuesday. Or any other part of my body.
If there's no blood, broken bones, bruising, tumours growing on my neck then I'm supposedly not ill. It's all made up right? I make all this up.... right? For attention.... right? How can someone so young be so sick that their fatigue matches a cancer patient going through chemotherapy?
Have you heard of the word cells? How about cellular damage? Have you heard of organs? Muscles? Joints? Nerves? The Nervous System? The Digestive System? The worst part about being autoimmune is that it's invisible. It happens on a cellular level. That’s why Myalgic Encephalomyelitis is known as The Invisible Disease. Sounds romantic.
To describe what it feels like. It feels like there are bricks weighing down every single muscle, joint and fibre in my being. It feels like rope is tying me down to my bed from the neck down, and I don't even have the strength to sit up to eat. It feels like I'm paraplegic, my mind is awake in a body that is dead. It feels like I'm being buried alive every second of the day.
And suddenly everyone wants to give me advice, which I appreciate. But don’t think I haven’t already tried it. I eat the cleanest diet you can imagine, I try gentle exercise, I try no exercise, I try supplementation, I’ve tried the drugs, I’ve tried the natural ways, sleep tests, fixing the sleep cycle. I’ve seen doctor after doctor my whole damn life. I plunge my dysfunctional body into ice baths weekly, just to stop the pain I feel even for a few moments. The pain of the ice is nothing compared to the pain under my skin.
I worked on my gut health, had massages, even acupuncture. My acupuncture therapist explained the fatigue I experienced with another patient who had ME/CFS. “If she were on a busy highway, and had to walk to the other side to save her life, she wouldn’t be able to so she’d lie down and die.” That is the energy we have.
If we were living iPhones - You go to sleep with 20% battery after a long hard day. You wake up back to 100% battery. I start my day on 4% battery, I go to sleep, I wake up on 7% battery. Then try to get through a day. You can’t. And apparently the disease has no cure, but everyone wants to tell you to hold on and stay strong. No. Cure.
I've been told I'm so beautiful and girls would kill to have my beauty, my youth, my singing voice, what I've achieved, my life. Would they really? If they knew how dark things get? Or the severe pain, suffering and misfortune I experienced every day before I even hit 25? I highly, highly doubt any of them would want to go through this. I wish that I had normal girl problems, problems of girls my age “Why isn’t he texting me back?” “I can’t believe she said that about me!”
I wish those were my problems. I wish my main problem was being bitched about. I wish I could date, and not feel like a burden because most of the time I’m so disabled I can’t do anything. Or see a future, a wedding with a dream guy even, anything other than just wondering and waiting for my death. Wondering when that cloaked reaper will give me a quick visit, and end it all. Accepting that I will most likely with immune suppression, die much younger than everyone else. Most people would be terrified of that thought, most are terrified at the idea of dying. I will happily greet the day, to feel some relief from the hell I reside in daily.
I wish it didn’t feel like my entire body is being buried in sinking sand, and with each climb to get out I only sink deeper and deeper into the severity of my symptoms. I wish I didn’t have to read recovery stories, only to be given a blanket hope, because each time I get better and functional, a mean tyrannical God snatches away that blanket with all my strength, leaving me bare to the bone shattered on a desert ground. And as a skeleton I’m wondering this desert, searching for my soul that left with my body. Secondary depression, to a primary illness.
I closely watch my dream this beautiful emerald diamond hanging on a string, dangling in front of me, but I am tied back by that rope and I can never fully reach out and grab the diamond. I can only hope that through the darkness of a crash, the sun comes out again, and I can run and play and chase that diamond, until my body decides to play dead again.