An Inside Job by Tottie Goldsmith (2005)

This disease (dis/ease) that I now know as Chronic Fatigue Syndrome crept in to my life at a time when I was, as they say, 'on a roll'. I had everything under control, my career was at an all time high, I was saying "double or nothing" to job offers as there was so much work being offered and I had the comfort of another option.

I was fit, I did TM (Transcendental Meditation) every day, had a beautiful healthy daughter and a fun and handsome boyfriend. I felt fantastic and in control.

It hit me really hard. One day I was jogging 8kms 5 days a week, living a life style that I could be generous to all my friends and family, pay rent in a beautiful home, drive a nice car, put my daughter through private school and still save enough money to put a deposit on a home, to being bed ridden for 18 months and house bound for most part of four years.

It was during my run as 'Janet' in the stage play "The Rocky Horror Show" in Sydney that this acute turning point in my life took place, and strangely, would be the greatest teacher of my life and one that I'm still leaning from.

I had completed a year of Breakfast Radio and unbeknown to me at the time, had been struggling with Glandular Fever thinking my tiredness was simply the early mornings and being a single mum, the stress of 'tag teaming' a Nanny at 5am.

I went on to play Janet in The Rocky Horror show and picked up a rather nasty case of Guardia from a water bug which forced me to leave the show for what I thought would be a week or so, but when I returned and went to walk down the stairs to get from my dressing room to the back stage section, my legs felt as though they weren't going to support me and I knew something really bad was going on with my body.

Three weeks of heavy duty antibiotics that made me feel as if I had been hit by a Mac truck turned into years of isolation, fear, deep sadness, physical pain and shame.

CFS is a very complex illness, it presents itself slightly differently in different people, has different degrees of intensity and also has some of the symptoms of clinical depression, so you can understand the difficulty in not only the diagnosis, but in people believing how deeply unwell you are.

The symptoms I had were at the beginning gradual, every day tasks began to feel monumental and I couldn't concentrate clearly. I couldn't sleep at night so I was exhausted all day, but once it got hold, the symptoms were so intense and overwhelming, that at times I thought I was dying or at least at times I wished I could have.

It felt like a mixture of jet lag, the flu and a ripper hangover. I ached, I couldn't bear sound or light, my nose dripped, my throat ached, I was dizzy and nauseous. I couldn't think straight or remember anything. I was in a fog. My body felt heavy and at the same time hollow, my legs vibrated inside.

Sometimes my heart beat was so weak it was hardly there and other times it would bang in my chest so hard and sudden that I thought I was going to have a heart attack. I would sweat in the cold and shiver in the heat but my hands and feet would always remain freezing.

I lay in bed with sunglasses on and in silence with barely enough energy to eat let alone make it back from the bathroom without having a 10 minute nap on the floor. As you can imagine, I was loaded with fear and confused with what was happening to my body ..and my life. Six months passed another six or seven, another year, I had to sell my house and another year passed. I was petrified, I felt guilty and ashamed and worst of all, I felt useless. I was so lost and trapped in a body I didn't know.

I had been so used to doing everything for myself, and for everyone else, and now I had lost not only my ability but my definition, my role. I didn't have the strength to do anything and I didn't know how to get well, but worst of all, I had to ask for help. Ouch!!

At times I would melt to the floor crying because I couldn't do the most mundane things for my daughter, like stand at the stove for longer than a few minutes to make her a meal, so two minute noodles became a culinary regular. When things got all too much and the sadness of not being able to be the mother I wanted so badly to be would choke me, that beautiful little person would sit on my lap, look into my sad eyes and wipe away my tears, stroke my hair and tell me that it was ok! I am overflowing with sadness and respect and love for her as I visit this memory.

The thing with these type of illnesses is that no-one can actually help you, all they can do is try to understand by learning as much as possible about it and gently, quietly be around you so the isolation and discomfort is just a little more bearable.

With CFS, being compassionate or understanding is fairly difficult as it is really quite ambiguous and doesn't show it's self physically yet is experienced physically on an internal and cellular level. Due to the heavy symptoms it can be isolating and one is practically forced to go 'inside'. And that's what the majority of the healing is.an inside job.

I went to eastern doctors, western doctors, spoke with other sufferers, forced myself to exercise (even if it was just to the end of the street and back), gave myself injections of vitamin B into my thigh daily, (which I did hiding in the bathroom from Layla, feeling ashamed like an addict), had intravenous Cs once a week in the veins in my forearm, which after a while I had to discontinue as my blood pressure had become so low that the serum couldn't pass my shoulder and would cause me enormous pain.

I gave up wheat and dairy, I practiced meditation and forgave myself for being sick. I prayed out to the universe asking for my prayer to be realized and if the universe really did have ears, it just had to hear mine.

Encouraged by my Aunt I kept a diary periodically, mainly during the times that I could either sit up long enough to write or when things were just so bad that the mighty pen could be my only friend and offer me a release. It is so interesting and at the same time heart breaking to look back over those pages now filled with questions and pleas to discover, and free myself from what was happening to my body. I wrote letters and prayers to God that begged for freedom and to give me back the life I knew.

Seven months into the really 'bad' period I wrote, "This is the courageous journey of a woman too young to feel old, too positive to give up and too healthy to be ill. I've turned a corner and I'm not turning back". Sadly that corner just kept turning for many more years but at least I was up for the fight. The following day I wrote, "The nausea, the body pain, the insane headache, the sore throat, the heart palpitations. I can't bear light or noise. Help me I'm dying, someone help me.

I can't think straight, I can't walk straight. I feel like my world is moving, my body is growing large and heavy. I have to meditate myself out of my body so I can stand the pain". Then I went on to write, "And in four days it lifted like a morning fog to give me, once again a glimmer of hope".

I had always, even if only vaguely, had an understanding that every illness is a response of something emotional or experiential. I related to Louise Hay's theories of the mind body connection and with the fact that neither eastern nor western medicine had helped me thus far, I was ready to look back and inside no matter how painful and unveil the trigger points that set this journey into motion. It was through this unveiling that I recognized that 'chronic fatigue' had become the metaphor for my life.

Not only had my mother abandoned me at age two but I kept choosing men that would do the same. Due to my fathers many marriages, home had been a rollercoaster of highs and lows and it was all I knew and I kept reinventing 'home'. I had also been sexually assaulted amongst other things and filled my life with distractions and destructive relationships that equaled my sense of self and kept my focus off the pain. In hindsight, I now know that I had to become that unwell and isolated in order to reassess my life. Putting myself under close examination, I realized that I had undervalued my life's journey and found it more comfortable to laugh off very deep hurts.

Monumental moments in my life had gone unaddressed and many stones unturned which consequently were forced down in the cellular memory banks of my body, maturing and growing like mushrooms in a dark box until finally presenting itself as CFS.

But after many years of being ill, getting back on board again was like jumping into a moving skipping rope and being completely out of rhythm. I needed to slow down, stop panicking.

I wasn't clear about where I fitted into a world I thought I knew, after everything had been so terribly interrupted but I had adopted an understanding that life is a series of choices and being indecisive or procrastinating was a choice but not an option no matter what small steps I was to take.

I had to go back to basics and return to my philosophies. I had to practice what I believed to be true of how we interact with life, (the universal law) and utilize what had got me through the toughest times in my life; Being in the moment through meditation and recognizing and reprogramming my internal dialogue which had been filled with "what is wrong with me?" "I feel stuck" "I'm scared" and "who am I to do this". None of this would sustain me and would far from promise me a decent future.

I began meditating again and incorporated a time for visualization creating a safe place to dare to dream again. To once again see myself involved, happy and successful. Knowing that entertaining thoughts of doubt would bring me precisely what I doubted, I prepared affirmations that would encourage me and make me feel more alligned. I learnt, and accepted, that we act on our most predominant thoughts and that I needed to guide them to a place that would stop me resisting and staying in fear.

I also learnt how to forgive those who had hurt me and accepted that they were doing their best at their level of awareness. Holding pain and anger towards others is so consuming and toxic for our minds, apart form being so harmful to our system . and hurts no one else but our selves.

So these are some of my tools to being well on a physical, emotional and spiritual level and I hope that somewhere in these words I have helped you to not feel so alone, given you some hope or maybe lend a hand in helping you to identify what lead you to be where you are today.

I want you to know that I ache for you and that I understand your loneliness, frustration and sheer exhaustion, and that I fully understand the strength it takes for you to tolerate each and every intolerable day, but be brave and know that there is a gift in this illness that will shift you to a deeper consciousness and compassion for yourself and the world around you.