As it is the annual Awareness Day for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) on 12th May, I would like to contribute to raising community awareness and understanding of this disease through the following blog of personal experience.

Thank you in advance for reading and sharing my story – Rachel x

I wake up in the morning and wish I hadn’t. From the moment my painful, puffy eyes barely open from crying the previous day I am hit with insufferable pain. I burst out in tears only moments after waking from the intense physical symptoms throughout my body and the thought of having to face another day like this.

There is an unbearable lead like force crushing my chest. It feels like someone has injected me with a toxic, sickening poison that has taken over every cell of my body. The poison is thick, heavy and black. It is torturing and murdering my cells. Making them rot slowly, grimly and without relief. The heavy poison-like feeling in my chest, in my head and in my neck and glands is indescribable.

There are no words to explain this distressing and foreign feeling in my body.

The sensation in my head and brain is also relentless. This gluggy contamination is so thick that there is no space remaining. It feels as though wool has been stuffed so tightly into every crease right to the centre of my brain. There is the heaviest fog that is only getting worse and a pressure that is unlike no headache I have ever experienced.

I am nothing but pain, poison and fog. The aching in my limbs feels like they are dying and withering away.

My body is dying. My cells are rotting. I cannot think. I cannot speak. I cannot put a sentence together. I can only cry in physical and emotional agony.

I feel as though I need to kick, punch or smash in order to release the physical pain and mental agony that has boiled up inside my body. But I cannot move…

There is excruciating fatigue. My body feels smashed and paralysed. The heaviness in my body is so extreme and I cannot relieve my frustration, so it too boils within. I am constantly trapped, constantly stuck and there is nothing I can do. The illness becomes my desperation and I am searching for more drastic options. I cannot do this anymore. I need this to end. Now.

Lifting my head off the pillow is a sickening thought let alone sitting up. I physically cannot do it independently. My mum eases me up into the sitting position in my bed through the sounds of my agony and distress. But I must sit. I must stand and then somehow get to the bathroom as I refuse to have a bed pan. It’s a long, agonising process having mum swivel my legs over the side of the bed before guiding my incredibly weak, slouched, rotting body slowly to the bathroom. Once there, I am completely slumped on the toilet, folded over with my head down to the ground, then I lie on the toilet floor unable to move. So there I stay exhausted.

All of this…..and I haven’t even had breakfast yet.

My whole day is spent on the lounge. I don’t have a choice. It is used as a day bed to escape my bedroom The light of the room intensifies my pain and I need it to be darker. How am I supposed to get through another day like this? I wish I could fall to sleep and never wake up.

My day is literally breathing in… breathing out. ..breathing in and breathing out until it is night time. These days are insufferably long, staring at the ceiling fan. I actually find I am waiting for night time as there is nothing else to wait for. But then it will start all over again tomorrow.

The agonizing symptoms and fatigue do not go away. Ever. They do not improve, there is zero relief… they only get worse.

Symptoms also intensify because I cry. I cry because I am scared and I am alone and no one can help me. There is no light at the end of the tunnel, there is no relief of this pain in sight. I don’t know how to survive this. How on earth did this happen to me?…

The television is not on because the screen and the sound is too overbearing for my body and make my symptoms feel more torturous . I push my head into the back of the lounge where I lay, cry and pass in and out of consciousness.

I cry to my poor mum in complete despair and I tell her it feels like I’m dying. All mum can do is sit with me. She is no longer at work in order to care for me. She sits with me every day and puts a cool cloth over my eyes. The heaviness of the cloth eventually calms my distress and I pass out into a coma- like sleep.

These coma-like crashes are sickeningly uncomfortable and terrifying. I am paralyzed. I am a vegetable but I am semi- conscious. Just the sound of somebody walking past me makes me want to cry out and scream in agony and discomfort but I am stuck, motionless and voiceless. If only they knew! I can’t have anyone touch me or talk to me. It makes me want to scream. It is horrible. Terrifying.

I am trapped.

I am slowly being tortured to death. But I do not have the relief of dying.

My body has wasted away to nothing. My hair is lank and falling out. I have lost muscle tone and kilos of weight. I look like skin and bone and have no strength or energy at all.

I cannot eat and have zero appetite. My mum makes a very small plate of food to pick at during the day but not much of it gets eaten. Whatever is eaten is forced out of necessity.

I cannot lift my head off the pillow to drink a cup of water. Mum puts a tall cup with a straw on the floor next to my head, which I lean down to in agony to sip. It is truly excruciating.

I am at rock bottom.

One does not only endure physical torture in a day in the life of severe ME/CFS. The mental and emotional aspects of this disease are just as devastating.

To be locked in physical agony with no end in sight, alone only with your thoughts and without distraction, is a war in itself. It is so hard to fathom that there aren’t any distractions that I can undertake even for a few minutes. My body is too sick to cope with any kind of distraction!

It is just myself here with my pain, my fear and my thoughts which are terrifying.

What has happened to me? Will I ever recover? How will I recover? I’m never going to run and play sport or have the future that I hoped for.

No one can help me. The doctors can’t help me. My family can’t help me. Is my life over? Yes. I’m dying. Nobody has called. Life is happening around me, everything and everyone is moving forward while I am here, not moving.

What will my old school teachers think? I was successful and now I am dead. I am so scared. This cannot be happening. Why doesn’t anyone care? Don’t they know how my body feels?

I wish I had cancer.

Yes cancer. The horrific disease that we all know so well to have the most devastating affects on peoples’ lives and of their loved ones. The disease that turns your life upside down from the moment you hear that diagnosis.

But cancer has strong community awareness, unlike ME/CFS, and is the disease for which people willingly raise money for ongoing research to find a cure.

The amount of suffering experienced with my battle of severe ME/CFS has me wishing that I had a disease where my life would be saved or ended. Either way…but at least there would be an outcome and an end to my suffering. What a truly, harrowing thought.

This is just one day experienced in the life of severe ME/CFS.

This does not only last one day or one week or one month. It can last for years or decades. Let that sink in. And some people don’t make it that far.

ME/CFS patients are told by doctors that there that is no cure. Generally, individuals and their carers are placed on their own mission to seek improvements in their health. This enormous physical and mental challenge affects patients and their families in many ways.

I am slowly rebuilding some health and am now able to gradually express in writing those thoughts from these totally debilitating days. I promised myself that one day I would record them.

I am on a mission to spread awareness for ME/CFS and its intensity. I hope by sharing my own personal experience of the physical and emotional state of just one day with severe ME/CFS, that knowledge can be gained about this incapacitating illness.

It affects every system in the body and is NOT just about feeling tired or fatigued as the totally inadequate name of Chronic Fatigue Syndrome (CFS) suggests.

It is far more. ME/CFS is a disabling neuro-immune condition where the body’s Central Nervous System is in a dysfunctional state.

I believe that awareness firstly leads to knowledge — leads to understanding — leads to patient support from the medical profession, community, family and friends, -leads to finance and research.

Please help me to raise awareness for ME/CFS on Awareness Day 2018 by sharing my story. I will be forever grateful.

If you would like to do more you can donate at www.givenow.com.au/mecfsaustralia or at emerge.org.au/donate/

By Rachel Maddick