Myalgic Encephalomyelitis, chronic fatigue syndrome, CFS/ME. These are just a few terms to describe one of the most destructive illnesses known to man. Manifesting as unrelenting fatigue and profound pain, ME/CFS is destroying the lives of 250,000 people in the UK. One in four are so severely affected that they are rendered house-bound or bed-bound with some even reliant on tube feeding. Sufferers are often confined to their beds, unable to walk and need help even to shower.
ME is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. But this definition doesn’t even touch the surface. My life has been ripped to pieces and then burnt down into nothing. My life was planned out. My life had so much potential but now as I write this, I haven’t moved for hours, I am in extreme pain all over my body, I lay in the dark because of light sensitivity and wait for someone to return home to take me to the toilet. My bed is my world. My bed is my support. It has seen me through endless days of torturous pain, fatigue and inner turmoil.
“But isn’t everyone tired?” This fatigue is like no other. There is nothing I would give more than to transfer my symptoms to another person for just an hour. The fatigue we feel is like a thousand bricks being tied to your body. You can’t muster up the energy to put one foot in front of the other. You can’t get dressed without a blackness descending over your eyes. You can’t carry a conversation let alone even speak. The only thing you can do is lie and exist.
Painful muscles, nerves, joints and bones. “Oh but everyone gets a bit stiff and achy”. We experience searing pain that feels like a hot knife being cut through your skin, a sledge hammer crashing down on your legs, smashing all bones to pieces. And guess what the best part is... it never goes away. Every second, minutes and days. I take over 25 different medicines a day. It’s funny because it’s almost become so normal to me now, wharfing down more than a handful of tablets. When I actually stop and realise what I’m doing it seems insane, at the age of 20, to have the body of a 90-year-old. How have I got to this point?!
Many people I know have ended up with feeding tubes. The main problem is swallowing. The body is that fatigued that something so basic that people do unconsciously stops working. There is that little energy left that gastroparesis occurs. It brings back that grim reality check that I could easily fall into this position.
People with ME find themselves paralysed all too often. It could be just a limb, an arm, a leg or total full body paralysis. We also get mental confusion or lack of memory. Processing what someone has said to you and responding can actually be one of the most feared symptoms when dealing with social situations. We call it brain fog. Concentration is frustratingly difficult when it never was. All the letters, numbers and words get so mixed in your head. You muster up all the energy you can find. Imagine digging in the depths of the earth. Deeper and deeper and still finding nothing.
For many years I have been grieving for the life I never got to live. Grieving for the past I lost. I’m living through a war with my own broken body. I became a ghost. I am not ashamed to tell you that quite regularly I will say that I hate my life. At one point I didn’t want to exist anymore. And this is what a large majority of people don’t know. ME kills. People become so miserable living a life of pain and exhaustion, just existing in a silent room that it pushes them over the edge.
It seems impossible that people still don’t believe that we are truly ill. ME is one of the most controversial illnesses because people don’t believe in it. They can’t see it therefore judge. We’re invisible. In fact Ricky Gervais made a joke, “There was a collection for ME today. Isn’t that the one where I don’t really feel like going to work?”
One day our bodies will just give up. Very few manage to completely return to normal health and this is not without years and years of suffering and a plan of management for the future. There is currently no cure. So we just have to exist.
Over these last six years, I have gone from being a seriously fit, athletic person to someone who now uses a wheelchair. I spend my days in the exact same place, not moving, isolated and exhausted. I have no idea if or when I may recover. That’s the cruellest part.
Pushing on is the only option I have. I’m not brave or inspirational, I’m just a person with a body that won’t function.
For more information on ME, or to help fund vital research, visit the ME Association at www.meassociation.org.uk.