Monday, December 24



So much has been given to me; I have no time to ponder over that which has been denied. 

 - Helen Keller

these words are a treasure of truth. i want to say this more often.

when i read that i think of that obscure baby who was delivered without a midwife by an unmarried woman in straw and cow poo, who grew up and made it possible for me to have peace with my creator, and a future with him. its almost too big to wrap my mind around.

then i think about my husband and family and dog and gifts and health and home and country and food and education...and it suppresses the complaints and miseries which are a part of life on earth. i have received much, so very very much, and i don't want to forget that, even when days are tough and health is bad.

be joyful this christmas for all that's been given.

Thursday, December 13


i am grateful for nights out.

madame brussels at night

i used to take them for granted. until i had to go to sleep at 9 pm because i was suffering.

on friday night we spontaneously decided to go into the city to look at the christmas lights projected on historic buildings...we left our little apartment at 9 pm. i wanted to cry for joy that i wasn't lying on my bed with ben helping me struggle into my pajamas and encouraging me to swallow my mass of bedtime pills. going out at dark? it seemed so crazily beautifully fun!

last night after ben's graduation we didn't rush home to put a migrained mess of a wife into bed. we left the ceremony venue after 10.30 pm and walked in the heat, in my heels, to Madame Brussels to linger a little longer over our celebration. sitting there, it seemed overwhelming that ben had in his hand a degree, and i sat by his side drinking, wide awake, well. it seemed like we were too blessed.

and what about the day after? was it spent in bed? no. that's what is even more deliciously incredible. i am crying as i write because i am so utterly blessed to be alive and pain free.

Tuesday, December 11

this too shall pass

This morning in the shower I set myself the challenge not to think or worry about the future, and not to think or worry about the past - but to just focus my mind completely on each simple task.

After a horrible attack of anxiety last night, I decided to fight the beast inside me with any tool I have in my bag, to reign back in the control that Worry gained. He is so all pervasive and crafty that he just sneaks right on in and sets up inside me, and then I have to grab my weapons and poke him out before he destroys me.

Within a second, my mind had wandered far, far away from shampoo and conditioner.

" Must check what time my appointment is - argh no, just washing my hair now, enjoying the priviledge of lifting my arms up without fainting.....
 Tire Wolfgang out with long walk before gradation - please be peaceful mind....
 Start to pack up house, where to start, in the kitchen? - quiet, just today, just this one minute....
 Call carpet cleaning company, will they be able to get the stains out?! - be still oh my soul....
 Cook food for breakup party, but what to make? - do not worry about tomorrow, for each day has enough trouble of it's own...."

It was a furious race of crazed anxious me fighting with calm, good perspective me. I simply couldn't stay still inside, in the bathroom, in the moment. There was violence in my brain, but I'd rather be fighting than succumbing.

Yesterday we got the confirmation that Ben will be working at Geelong Hospital next year! We are so thankful for his job, so thankful for my improvement and a million other things - I wish we could sit and drink in the joy of it, but now we have to keep working because we have to move down there before he starts in a few weeks. Apart from the inevitable chaos of shifting, and house hunting, and applying for rentals...there are chinese doctor, psychiatrist, specialist and GP appointments to attend, christmas break ups, friends to farewell, Ben's graduation, and a host of other things.

I'm scared that with so much pressure and activity my much improved health will go backwards. I'm scared that it's too fragile to survive these serious life changes in one piece. And I'm horrified to find myself incredibly anxious, struggling to breath, and dying to pull out my hair.

Anyway, I am not pulling out my hair (because being bald adds even more problems, trust me) and I am praying and breathing and deciding to take it one little minute at a time because,

"Who of you by worrying can add a single hour to his life?"

"Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own."

This is not new wisdom, it's so timeless, so wise, so damn hard to do. I am so finite and fragile that to think ahead more than a day is too much - so that's why I will not let Worry cosy up inside me, harming my mind and body and soul.

This, too, shall pass.
How those words resonate in my soul, now that I feel in my body the truth of them.

"You keep in perfect peace him whose heart is stayed on you because he trusts in you." Isaiah 26:3

Wednesday, November 28

loving myself

For years I have grappled with the concept of loving myself. 

I baulked at people saying, “I just need some me-time”, or telling me to be “kind to myself”. I have always disliked ads on TV saying that you deserve this or that, “because you’re worth it”. These concepts didn’t sit with me at all, because they seemed so self indulgent, so selfish, selfish, selfish. It was the kind of post modern I didn’t like. My self-critical nature and strong protestant work ethic struggled to view this kind of self inclusiveness as right or wise. It made me squirm inside. I ridiculed these statements. Yet the longer I was sick, the more I bumped into these phrases; not only in the media, but also from the people I looked up to and respected the most. 

Everywhere I went, I was told that learning to ‘love myself’ was one of the first steps to healing. Really?!

An inspirational woman who I really love told me many times to be kind to myself, and understanding of where I am right now. 

After doing something courageous, my psychiatrist asked me how I had rewarded myself. I avoided the question by saying that I was glad I’d had the courage to do this hard thing – because I squirmed with the idea of ‘rewarding myself’.  He picked up my avoidance and pressed me to begin to acknowledge myself and really celebrate when I achieve something. 

I was more comfortable with words like self discipline and self control. Surely that is the best way to deal with self? By rallying oneself to push on, to be strong, to be better, never give in. (all dangerous things in the case of chronic illness). 

In one session with my psych, he asked me what I thought the most important thing is. I replied that it was to love God and love others. 

He looked at me in shock. “No! You’ve left out something absolutely critical. Come on! You should know this!”

I was totally blank. What on earth had I missed out?

Love your neighbour, AS YOURSELF.

And then it started to click, as we talked it over. How could I possibly love other people or be a role model, if I didn’t know how to love myself? If was willing to be forgiving, and kind, and understanding of others, how hypocritical to be a self tyrant in my own life. If you don’t care for yourself in such a way that you are in decent health, and a good mental state, you can’t even begin to give to other people. You can’t always say ‘yes’ to people and events because if you do, you might burn out. Who said that everyone else is more important than you? Your needs are equal to theirs. It’s not selfish, it’s self inclusive.

Self inclusive.

And how is this the first step to health? Well, it’s a chain reaction. If you are caring for yourself, giving yourself time to exercise and eat well, resting after exertion, doing things every day that you enjoy e.t.c. you will cultivate a positive frame of mind. Research has again and again proven that being positive and happy gives the body the best chance to harness its resources to heal, to function at its optimum.

So three months ago, I decided to be more self inclusive than I have been in the past. I decided that I would everyday try to do things which I love, things which are nurturing to my mind and body so that it has a good chance of healing. For me, it’s been taking my dog to the park and watching him frolic while I let the Vitamin D soak into my skin. I took days off flute when I didn’t feel like practicing. I let myself drink chai tea with honey in it. I rewarded myself for not pulling out my hair. I stopped feeling bad for skipping events when I was unwell. I went to yoga every week. I started to filter out all those awful cruel things I chant to myself.

It’s not self indulgent. It’s about being gracious, forgiving, understanding and kind, to yourself – while still challenging yourself and changing. 

And if my improved health is anything to go by, my body likes it too.

Sunday, November 25

being alive


Yesterday morning I got up and went to Indoor Bootcamp, for a grueling hour of burpies, sit-ups, running and weights. I felt a certain elation amidst all the torture and grimacing at the fact that I was actually fit enough, strong enough, well enough to do this class. I blended in with the ‘well’ people, my instructor wouldn’t have known that two years ago I could barely walk to the mail box. 

When I arrived home, Ben asked me if I’d like to sit down and have a drink before we headed to the factory outlets in order to replenish my underwear supplies – which had been seriously dented from owning a sneaky puppy with a penchant for bras and undies (and partially because I use the floordrope more than the wardrope). I didn’t feel remotely tired, so I suggested we hit the road right away to begin our shopping.

After a successful trip we went home for lunch, and instead of lying down before Puppy School, as any wise CFS/POTS sufferer would, I pulled out my flute to practice. 3pm came and we hopped in the car with our Wolfgang for one of our favourite events of the week. There were less dogs in the park than there usually would be before our class, and then one of the staff came to say that there was no training today, because it was above 35 degrees Celsius. I was seriously disappointed...but my disappointment quickly turned into shock.

I had no idea it was so hot!! I knew it was a warm day, yes...but usually when it’s anywhere near 30 degrees, I’m lying in bed with the fan and a bucket, nearly crying from my bodies’ reaction. My ill body refuses to work, my legs swell up and I am like a wilted flower. 

I looked down at my feet, just to check – they weren’t pooled with blood with ugly veins bulging everywhere. I didn’t have a headache. I just had energy, and a total disbelief that it was too hot to train our dogs. All sadness that class was cancelled melted into ecstatic joy that my body was behaving like a well body! 

This is just one little example of all the delightful surprises and shocks I am getting every week. It just throws me completely.

The other night on our holiday I suggested we go to a bar or cafe. Ben was recovering from a cold, and didn’t feel too well, so we decided to stay home for that reason. But oh, the contrast that I was the one who wanted to go out, and Ben wasn’t up to it. So I lay in bed reading my book while he slept and delighted in the fact that I had energy to spare. That’s when the real healing takes place – when you have strength, and instead of using it up right away, you just relax and savour it.

I sometimes look at the couch – we brought our puppy so that I would have someone to lie with on the couch. And yet, I’ve barely spent any time on the couch in the last couple of months. My puppy spends a lot more time lying there, while I potter around. 

This is the happiest summer I have ever experienced – spending days on end with Ben who has finished his studies, and rediscovering the joy of health. Enough suppressing my hopes of recovery, they have bubbled up and refuse to be cautious any more. I actually think I’m getting well.

Saturday, November 17

please pinch me, hard

The sky has no colour, no life, just a melancholy and listless gray which permeates all that lives beneath it. Survival is possible, but I don’t think radiant joy is. 

Bit by bit, it peeps through, that soul and earth warming star, the sun, and makes every living thing sparkle. The sun stipples the trees, it warms my back, and it makes all living things want to live more. Golden and beautiful.

That is how these past months have felt, like glorious warm sun kissing my skin and hair, after an eternity of weary, depressing gray. 

I am a lamb frolicking in spring, with fresh vigour. I have taken wobbly steps out of a dim-lit hovel in which I’ve been trapped, trying to survive; into fresh air. I am a bird soaring in the skies. I am intoxicated with the blessing of health. Always in my mind is the gray sky, the dungeon, but revelling in freedom is so much sweeter for the suffering which came before. 

The absence of continual pain is shocking. Why don’t I have a headache right now? Why do I not need to rest after seeing those people? Why have I still got energy, after such a busy week? How come I haven’t collapsed in bed feeling ill, dead? Why haven’t I needed those drugs and a trip to the pharmacy this week? I begin to measure my good health in weeks, and months, rather than hours. It used to be, “I had a well hour this morning...” now it’s “well I’ve kind of had a well month”. That’s kind of 720 hours. Not all of them well of course, but overall. 

Am I sane? Please pinch me hard, because I don’t want to wake up and find it was a dream. Alive. Not half dead, as I am accustomed to surviving.

“I feel like me again, the real me”, I keep repeating to my ever patient husband. He is excited, amazed, and curious, because he has never met the old me. I think he likes it. A lot. It's kind of like Snow White waking up, and she can finally kiss her prince back.

When did I last sob for my despair at the awful endless illness – for doctors who couldn’t help, for years ticking by? Rather than crying to God for healing, I pour out my thankfulness.’ Thankyou’ never ever does it justice, but I know he knows that overwhelmed feeling I have in my heart. He doesn’t need me to articulate that feeling.

I feel excited that in two weeks I will turn 22. Somehow celebrating a life of health excites me a lot more than recognising another year of survival, of patient (or not so patient) endurance.

I just realised, I’m not enduring life at the moment – I’m actually living it. 

And if I do relapse? At least I will know this is possible, this is an actual reality for my body. But I don’t dwell on that thought; I’m living here and now in these sunny days without blighting them with fears of the night.

Monday, November 5


Sometimes you have to go down before you can go up.

Sometimes you have to take two step forwards, one back, and then repeat. 

Sometimes you have to just be, just remain where you are for a long time. 

Always, you have to be patient and kind to yourself about where you are. 

Photo source

Those are the things I have been learning the past few months. The only way to describe my health at the moment is by a graph, where the overall shape is an upward slope....but where there are jagged downward jerks along the way. 

There are days where I feel characteristically ill, and others where I am so well I taste and delight in what it is to be in full health. One excellent week leads into a week of tears, migraines and couch rest – and then as suddenly as my bad health appeared, it departs again, like a fleeting bad dream. The main challenge in this new stage of illness is to be incredibly flexible mentally: to accept and embrace whatever my body throws at me, and to remember the upward slope even when I’ve taken a temporary plummet.

Perhaps that sounds simple, when written in a sentence – but we’re dealing with a heart which is longing and working towards healing. I agonise in those down times that I’ve taken a fall to my former state that will last for months. I deliberate carefully about how much to do: less to preserve my health, or more to utilise my new found well-being? I try to celebrate the progress without clinging to the health which may not remain. I pray and thank.

Each time I achieve something, I want to throw a party and rejoice for feeling alive. I cannot express how wildly well and free I feel as I do the shopping alongside Ben who has done it alone our entire marriage. How incredible it feels to put my arm around his waist on our walks, when I didn’t have the strength to lift it up that high for the first few years. How elated I am to be able to do the dishes, and help make dinner....go on long car trips, play my flute standing up, hold up my hair straightener long enough to straighten  my hair, and get ready for bed at night without any help. Tears of happiness trickle down my cheeks as I feel gratitude for this lavish gift, and dare to hope that the graph of my health is going to keep winding its way slowly, slowly to the top.