Thursday, September 27

pick your devil

When I started taking anti depressants in January to aid my cognitive behavioural therapy, I knew there would be side effects. The effects I was unfortunate enough to receive were nightmares and night sweats. But oh, the sweet, sweet relief of having my anxiety dampened, my spirits lifted...I was prepared to put up with the night-time horrors because I didn’t want to farewell my newly found day- time bliss. My shrink told me to let him know when I got sick of the side effects and I could change medication. Seven months later I was exasperated. I just wanted to go to bed without getting killed or raped, to wake up dry, to sleep like I used to. 

But instead of suggesting a change, he suggested I try stopping altogether to see if I am now able to cope without it; to see whether my anxiety can be managed medicine free. After all, I was on a small dose. All the counselling may mean that I am in a position to deal with myself.

I was told that I shouldn’t feel too much, maybe a headache...but I have grown to know my body intimately these past few years and I doubted these words would be true for me. My body takes things abnormally hard. I am the person who has an adverse reaction when none is expected. I can’t handle perfume, I can’t tolerate drugs for insomnia, I can’t drink half a glass of alcohol without becoming weak, and I can’t eat a biscuit without feeling some fast and unpleasant physical side effect. I am the girl who nearly ends up in hospital from the drug that the hospital gave me.

It has been ghastly. 

It’s frightening to realise how acutely my body is missing this drug, how addicted I have become to it. Many times in the last few days I have thought about people who are dependent on nicotine, and alcohol, and drugs...and I know why they find it so hard to end their complicated relationship with these substances. Because they can barely survive without it. What support they need.

I’ve been experiencing brain zaps – nigh impossible to describe, it’s this horrid sensation of my brain falling away and losing all consciousness for a few seconds. This happens every time I move my head. It’s sickening. Last night I was more drenched when I woke up at 3 am than ever before, and again at 7am. I lie down and sleep for hours, and wake confused, disorientated, and feverish. It’s a far madder feeling than the illness which had me go on these drugs...the first day I was so irritable I thought I had lost my whole character. I asked Ben if he would buy me a punching bag, but he didn’t think it was practical. 

These medications seem like such a blessing – oh, but are they are curse? What are they doing to me? If it’s possible to survive without them, surely that is better. Pick your devil – the torment of mental illness, or the torment of mental illness medication.

Now I wait, and pray that in a few weeks (please no longer) once the withdrawal symptoms have left I will be in a position to manage my anxiety, medicine free. 

Thursday, September 20


With spring days upon us, I was looking through my draw for some suitable t-shirts to wear. Most of them were pilled, misshapen, or had an unpleasant odour which refused to be washed out and I had a very female crisis at this discovery. Basics never last, so I never bother to spend much money on them. They get washed most days, and that’s what kills them so fast. Anyway, I went shopping and found a top that I loved. Usually I don’t wear prints or words, to my eye they are often wanting in the style deparment. But I guess it depends on the word...because I ended up buying an Esprit top with both a word and a picture on it.

It has a red squiggly heart on the front, and the word ‘courage’

It was one of those times where you just grab it off the rack and know that it’s the one. I’ve worn it ceaselessly since.

 Somehow over the past few years ‘courage’ has come to be one of my favourite words, and I mutter it to myself at appropriate times. It seems that being alive takes a lot of courage. Just putting one foot out of bed in the morning takes courage on those days where I feel I can’t move.

little wobbly steps

My favourite thing about courage is this: if you routinely practice being courageous, facing your fears and fighting your weaknesses, you gradually wear them away till they are problems no longer.

I was 19 and I could not go to the doctor alone.
I could not go for a blood test without mum.
I could not drive the car without panic attacks.

But I was pushed into frequent solo doctor trips once I found myself living in Melbourne away from my mum, and with a husband at work. I went for bloodtests on my own, in complete trepidation, and survived. And I hopped in the car which made me shake and sweat and cry – over and over again with Ben beside me. And now its 2 years later, and Ben asks me if I want him to drive me to the psychiatrist because he has a free morning. I thank him, but say that I really don’t mind driving at all, and feel full of confidence. Driving has no fear for me, nor does going to doctor’s surgeries. It’s a delicious feeling, this sense of overcoming. 

Last weekend we took our puppy to a big waterhole at the park.

“Are you sure he will be able to swim?” asked Ben

“Of course he’ll be able to! He’s a dog. It’s not like we have to take him to puppy swimming school,” I replied, confident in my assertion.

We watched him running up to the water and then backing away from the unknown substance. Some bigger dogs jumped in and enthusiastically doggy paddled in the deep. Our little dog looked on curiously. We decided it was time for him to take the plunge, and Ben threw a nice stick into the water. Without a thought, Wolfie jumped for the stick and splashed into the water – where he sank down. And down. I could see his floppy ears floating up under the water, but he wasn’t struggling, or swimming. My heart stopped. Ben moved to the edge of the water, about to jump in to get him, but just before he moved, Wolfie started to flap himself upwards with great effort and unpolished skill. He finally got his head above water and groped for the rock, where he hung for a while looking scared and dishevelled. 

I was so proud of him. He evidently didn’t know what to do at first, he just went down. But then he struggled, and pushed and somehow got himself up. I wouldn’t call it swimming, but it was a big plunge and the first step. And I thought of what courage it takes to do things for the first time – sometimes it’s still scary at the 20th. But imperceptibly it improves, each time you dare to be courageous.

photo source

One of my weaknesses is this beastly disorder where I pull out my hair compulsively – Trichotillomania. Often I have felt sure that I will go into old age still pulling my hair for relief, though at least I could wear a wig then and it wouldn’t be so odd. Yet I know I don’t have to be a slave to this – if I’m to win over Trichotillomania I’m going to have to kick it hard.

I have a chart on my fridge.

If I pull out my hair, I am not allowed my nightly cup of tea and gluten free muffin. If you know me at all, that is pretty much the worst punishment imaginable. I see the stars on the days that I have resisted the urges and I feel excitement – each star is another sign that I need not be conquered. It gives me courage to fight the urges when they next arrive; I am determined to have another day of beating the hair-pulling monster (and another cup of tea). Sometimes the battle inside is excruciating, but there is always pain involved with courage and change. Being outside of my comfort zone is horrendous at the time, but without fail I am relieved, thankful and inspired afterwards. 

It doesn’t have to be two steps at a time. Just one. Just one tiny courageous step towards a better way.

Monday, September 17

pessimism & hope

I would love to begin a post one day by writing something like this:

Feeling well, and coping with life at the moment.

Apparently it is possible to feel that you are coping with life, I’ve heard of people who do, but I don’t think I’ve felt like that for a solid three years. And certainly not in the last few weeks, as life in our little flat has been the ‘almost-falling-over-the-edge’ kind. The ‘if-one-more-thing-happens, we-might-explode’ type. It’s uni work piled up to the ceiling for poor Ben, and uncertainty about where we will live next year, and our gorgeous puppy who has poodle anxiety and can’t be left home alone for howling (we live in an apartment), and me feeling disheartened about my stagnant health situation...and I wouldn’t be surprised if there were a few more things that my foggy brain has quite forgotten. I just think of myself as a Sally Pearson with a sprained ankle. I sort of launch up for the hurdle but come crashing down before I’ve cleared it, and then unlike an athlete, I sit there in a heap for a while before trying again.

As in most dim times, various things happen to encourage us. Providence.

One night last week, I was crying about something. Someone came to the door, a courier, and dropped off a package for us. It was a CD of beautiful music focussed on hope in the vale of tears, from someone who knows what it is to suffer. We were amazed, touched, spurred on. We haven't stopped listening to it.

Then a few days later I read that some old friends were expecting a baby. This news was so incredibly joyful for the fact that they had been unable to have a baby for 10 years – a decade of praying and being joyful in their current life situation, and now finally a baby for them. I felt like their life was a mirror of mine: the baby they so longed for is the health I long for. They had managed to find the balance between hoping and praying for a baby, but also living contentedly in their present situation. That inspired me. I feel that I am always hopping off one side: I’m hoping for an end to my pain, and miserable about my present life, or I’m happy with life, but not even thinking or believing that getting better is an option. 

It gave me so much hope! Firstly, it is possible to be peaceable towards my lot now, and at the same time hopeful for recovery. Those two things aren’t mutually exclusive.

Mostly though, I thought: if after 10 years they were given a baby, then God hears us. There is hope for recovery – it’s not too much to ask for, too unlikely to believe as a possibility, too unrealistic to hope for.
That day I called up a Chinese Medicine doctor we had decided upon. Previously I’d felt no real joy about trying another new treatment option – I didn’t want to have my hopes disappointed again, and loose more money in another failed attempt. Now I’m glad that in less than 2 weeks I will begin my foray into the world of eastern medicine and put myself under the care of a man who has helped other CFS sufferers recover.

the next experiment

My pessimism has lifted. I know there is hope, this could help me recover. I also believe that if it doesn’t change anything, God has a very good reason for making me wait and I shall not give up or lose heart.

Saturday, September 8

do you know that skinny sick girl?

Photo source

I don’t know how people think and talk about me, mercifully.

Perhaps I am ‘the sick girl with CFS’ in their minds, or ‘the hypochondriac’ to the less convinced. As a girl who was serious about ballet, I was ‘the dancer’ but at my ballet school where all were dancers, they thought of me as ‘the home-schooled girl’ or ‘the kiwi’. I’m glad it wasn’t ‘the acne face’ which would have been equally apt for this period in my life. When I spent all my time studying the flute, I was the musician and I think I defined myself the same way. Perhaps the field to which a person devotes the majority of their time, or an uncommon background or physical feature are the means by which we generally distinguish one person from another. Whatever characteristic stands out from the rest of the flock makes for an easy distinction and label. It takes year to get to know someone, and hours to give an accurate description of that person, so naturally we need to simplify all that complexity and boil it down to a simple key point. A simple key point which can never do anyone justice.

Be our label flattering or insulting, we run the risk of limiting ourselves if we choose to live by it. 

Whatever it is, it’s just the tiniest glimpse of who we are, and sometimes it’s not even that, it’s an incorrect perception.

Some days I lie on that detestable olive couch and think,

“Yes, I am the sick girl. I spend all my time being a patient, and it’s what separates me from everyone else. All I am is a frail, incapacitated woman with dreams in shreds and a hopeless future.”

And believing myself solely a useless body, I don’t strive to rise above, or challenge myself, or grow. I curl up in the invalid’s box, squashed by my inaccurate and simplistic labelling. I literally consider myself ‘in valid’, and somehow a burdensome blot on society. 

That’s what it means to be defined by my illness. 

Watching the Paralympics, I am inspired by the disabled bodies, and the men and women inside those bodies. They must have all hit that point in their lives where they thought,

“Who am I? A paraplegic, or a talented individual, who has a passion for sport, for advocating for injured people, who loves my partner, who gets a thrill from taking great photos at the beach, who has no legs...”

They put their disability low down on the list of key facts about themselves. They choose not to be defined by that detail. They use what could have been their most limiting weakness to be their greatest strength; they challenge themselves to make a difference despite their circumstances.

Inside, I am exactly the same as I was before I became ill, the real part of me remains intact and continues to grow. I laugh when I trip over, dance in front of the mirror, feel up lifted when I play classical music, cannot put down Jane Austen, wake up thinking of things I want to make, love to talk with people about more than the weather, wish to write a book which people actually read or earn a living from being an artist, want to be an awesome mum who gives great hugs, try to use my gifts to make this world a tiny bit more beautiful or bearable, want to do it all for my creator. 

P.s. I also have CFS. Just a tiny yet formative detail I thought I should add in there.

Tuesday, September 4

turn up the wellness

You don’t have to be scientific or studious to be thrilled by Epigenetics.You just have to love the possibility of change.

This nine minute clip explains it far better than I ever could, its exciting news:

If you’re more of a reader, the article below is great too:

So I was trying to understand the implications- for my own life. There are genes in my body which are speaking too loudly, the genes responsible for my illness. They must have been switched on or turned up at some stage, which means that they can also be turned down. If what I do, and my perceptions can make the epigenes control the ‘volume’ of my genes, that means my actions now, in this stage of my illness can lead to recovery. 

One scientist said that when someone goes into remission from cancer it is often from a great change in perspective on life and diet, resulting in the epigene turning up the disease preventing genes, and turning down the disease promoting genes.

It means that medicine doesn’t necessarily have to discover a cure for me to recover, my body could recover on its own! 
 I wonder if this is why CFS seems to mysteriously leave after 5 or 20 years, without reference to the latest treatment option tried – it goes because what the patient has been doing in making life manageable and holistic has caused the epigenes to turn up the health promoting genes?

I’m seriously keen to turn on the disease preventing genes.

So when Chinese Medicine herbalists talk about positive energy flowing through the body, maybe they are onto something absolutely critical, the stuff which changes the ‘volume’ of certain genes. Maybe diet, and exercise, and keeping the brain active, and loving others and all those factors of a healthy life are turning up the good genes through epigenetics. Lying around in bed, feeling rottenly depressed and bitter at life’s ‘cruel blow’ and eating processed rubbish seems to be the ultimate strategy to ensure illness remains, while learning positivity and changing your lifestyle might be the catalyst for the illness to go. Even if the illness remains, you’re going to be a far better influence on the world if you’re spreading positivity.

In western medicine we have separated the mind from the body for too long – we have mental illness, and physical illness, and we don’t talk very much about the union between mind and body. But they are intrinsically linked. What we do in our lives affects which genes are most prominent and what we believe affects what we do.  

This is a huge inspiration to make healthy mind body choices – not just for us, but for our kids because they will be influenced by our choices.

I can choose to eat healthily, drink purified water, enjoy the sunshine, exercise often, be spontaneous, rest when I feel tired, laugh with friends, stimulate my brain everyday with new learning, and fight off stress.  I’d never have learnt about how rich life can be if I’d never become very sick, and I probably wouldn’t undo this if I could go back in time – what a chance to take time out and learn to live!