by Alicia Brennan
Some days I wake up several times before I finally surrender to the life that I have and get out of bed to face the day. Each time I wake, I try to go back to sleep in the desperate hope that the next time I awaken, it will be for real, and I will find that the past 10 years have been nothing more than a terrible dream.
Days like this are when I long to go back to being the confused, painfully shy and much maligned thirteen year old I was before my illness and to live the next part of my life over again as a healthy adolescent. As bad as the teenage years are for everyone, very few people understand what it is like to live out those years isolated from your peers by an illness that nobody had heard of, most doctors didn't believe in and, even now, ten years later, almost nobody understands.
Try to imagine what it is like to be fourteen, confused about the world, alone, and to be told that even though you have gone from energetic sports fanatic to bed-ridden invalid, your illness is simply a figment of your imagination. That what you are feeling isn't real. Can you understand the damage it does, right to the very centre of your soul, when you begin to doubt yourself? To wonder if the things that you feel are wrong, and if the often repeated opinion that you are simply lazy and avoiding life is actually the truth? When you start to doubt yourself is when you reach the borders of madness.
To spend years trapped inside your home, months in your bed and yet be unable to sleep. At times, to be unable to sit up, feed yourself or sometimes even speak. And while your body will not obey your silent, tearful pleas to move, your mind refuses to stop. You find that you long for the oblivion of sleep, or even death. You reach a point where you no longer care which. I came to the sickening realisation that I was truly trapped, that I lacked even the strength to kill myself. There was no escape. That was what tipped me over the edge, sending me tumbling into the abyss of insanity.
When I finally found my way out of the mists, I was eighteen. So much time had passed and yet, so little had changed. No matter how many doctors, specialists, or alternative therapists I was seen by, not one of them ever found evidence of anything, so I was still considered by most people to be imagining my ill health. They kept sending me to psychologists, who would tell me to get out and get a job. Like that was a possibility- I couldn't do any of the things I loved, let alone try to work. They had no idea of what I was suffering from. My GP, whom I still see to this day, was the one who at least gave me a name to put to my illness- Chronic Fatigue Syndrome. She was the only doctor I found who agreed that what I was suffering from was something real. I didn't even care if it was an accurate diagnosis or not by that point- I just needed something to call it.
It always frustrated me beyond all reason when people used to tell me how lucky I was, that I could watch television all day and not have to go to school or work. Nobody seemed to understand what I was saying, that lying around in bed all day every day is not the fantastic bliss that healthy people seem to think it is- it’s actually a type of hell.
If you want to understand the concept, next time you have time off work, try lying in bed for 24 hours straight, leaving only to use the bathroom. Easy, right? All right. Try doing the same thing for an entire week straight, without cheating. Are you getting bored yet? Are you itching to get out and do something, anything? To socialise with people that you don't live with? Are you sick of the sight of the same four walls, day in day out? Now try and comprehend the months and years I spent in or close to that state. Without the relative bliss of escaping the boredom for the six to eight hours sleep that I bet you had each night. We actually moved house when I was eighteen because I just couldn't bear to look at the walls in our house any longer.
I do not remember much of that time, for which I am eternally grateful. All I know is that when I had the strength to write, I must have. My journals from that period are filled with dark and haunted pages. To say, when looking back now that these words horrify me is woefully inadequate. I find that I lack the descriptive capacity to put the full horror, anguish and despair that I felt during that time of madness into context. It is perhaps sufficient to say that these pages disturb me so greatly that I am tempted to burn them, so that the darkness contained within is removed from my world forever...
To be continued...
Alicia Brennan is married to a wonderful, supportive man, whilst keeping busy looking after three amazing kids. Making cakes in her past time and volunteering as a basketball scoretable official is something Alicia does regularly, all whilst deaf in one ear and slowly losing her hearing in the other. Living with MDD,CFS & other health issues for the past 20 years, Alicia has taken the opportunity to get out all of her pain onto the page - so she could 'accept it, let it go, and live her life to the best of her ability'. What an incredible woman!