Wednesday, July 25

stop for sick

There is an advertisement on TV at the moment for Codral cold and flu tablets.

The guy says,

The world doesn’t stop for sick.

The whole commercial is about how you’ve got to keep going, keep pushing through; time won’t stop for you so, here, take a quick fix tablet and get back on that maniac conveyer belt called life in the 21st Century where sick days cannot be taken. We don’t have time to get sick, we simply can’t. We need to take something to relieve the symptoms so that we can keep functioning and ‘soldiering on.’


We don’t have time to rest, and when we have to rest, we spend that time worrying about what we’re going to do to get back on top, fast. 

Crap! I’m sick – I’ve got this to do, and now I’m not going to be able to.....need to find a replacement...need to catch up on work....don’t have time to get behind....quick, body, HURRY UP AND GET WELL BECAUSE THE WORLD DOESN’T STOP FOR SICK!!!

It’s a whirlwind blur. Its physical chaos, amplified with mental stress because it’s not OK to be unwell and take time out. 

So year after year, we pop those quick-fix tablets to deal with symptoms. We hurry our recovery with instant remedies and compromised rest. We’d probably rather take the time to just rest properly, but it doesn’t seem to be an option because we feel we’ll be left behind as life marches on
On Facebook the other day a friend posted:

I’ve had glandular fever for two weeks, its so crap, need to get back to work!!

I felt frustrated at that comment – it reflected so deeply this hurry for a quick recovery, intolerance to being out of action. I wanted to cry out, “, don’t try and speed up your recovery because that will ultimately slow you down.” I had plunged back into university after my glandular episode because I was ‘so behind’, and worked so hard I never recovered properly, taking those very Codral tablets from the advertisement.
And I felt angry because she’d been sick for a grand total of 2 weeks and she thought her life was awful: what about me and so many others who have been sick for years and have had to drop everything we were doing, indefinitely? Self pity got the better of me. I forgot that it took me a journey to understand some of the things I understand now....and I’m just starting out compared to some of the wise people I know.

No wonder people always ask me if I’m better yet. No wonder people moan after a week long bout of the flu that they are bored and hate being sick. We don’t have patience with our bodies. We are part of the instant rat race, the race that never stops, not even when our body is crying out,


And then we wonder why one day our body puts the handbrake on, and refuses to move another inch. It says, “I’m done. I’m not going on; you have worn me out till I have nothing left to give you.” Then, when we have no choice but to withdraw from all responsibilities we realise that maybe we could have taken some time out earlier, before it came to this. 

Work, or university, or school, or motherhood says you can’t stop; you can’t afford to be sick. But believe me, you can. You can take a week here or there – and it might cost you greatly at the time, but compared to having a complete health break down later, is there any question? If I have kids one day, I want to start them off believing that taking time out when your body needs it is more important than 100% attendance, or even your reputation as a committed worker. We’ll read good books, and drink fruit smoothies and wait till they are running around with health before they go back to school. It’s called wise. 

Busy always has more time than you realise, and responsibilities must go on hold for sick. We’ve got to stop soldering on, and start resting when we’re sick – even if that means we have to be different from the ‘world’. It’s called big picture.

World, stop for sick!

Tuesday, July 24

'other people'

We read about life changing illnesses and calamities happening to 'other people'. This person lost their home in a fire, that girl was raped, this kid has leukaemia.  But these things don’t happen to us. Not to me, we think. Never did I imagine my life changing paths, without a decision on my part – "those things don’t happen to normal girls like me, they happen to 'other people',” I thought.


One day I was the girl who was sure life would follow a predictable path, the next, I discovered that I had limited control.

The day my body began unravelling...

I wasn’t feeling good about returning to school after the summer break, which was strange. Usually I was rearing to return to the friends, the music immersion, and the flute lessons. It had been a dream when I was first accepted into the VCA Secondary School, and I’d worked my butt off since arriving.

“I think I’ll be fine once I start,” I told mum.

I hoped the old me would kick into gear as soon as I was surrounded by inspiring people, by the VCASS environment. 

The first day back, I woke up early to catch the train to Melbourne, and it was hard. At school, they were gearing us up for our final exams, spiel after spiel about how hard we would have to work. I felt daunted; usually an A student it was odd for me to be overwhelmed about working hard. I went up to a practice room at lunch time to get some tone practice in.

In there something strange happened. I was looking over the VCA buildings as I started struggling for breath. I couldn’t breathe – I had to drag the air in, and I became afraid. I was worried I’d faint, or worse still, die. My extremities tingled. 

Alarmed, I returned to class – yawning every few seconds and looking gray in the face, according to my teacher. I had arranged to study psychology at the Centre for Adult Education due to a timetable clash with French at school. It was a 3 hour evening class in Lygon Street. Mondays were going to be long. I felt bad, felt like I couldn’t do this anymore, like I would break. Where had my enthusiasm gone, my vigour? I stumbled in the door at 10.30 pm, having made it through my first day of school, and feeling like I’d just survived a marathon.

A week later my dad was bringing me home from school as I lay lifelessly in the front seat with a pillow he’d brought along. It was abnormal for Dad to drive up to Melbourne to get me, but I was a wreck and the relief was immense. I could collapse all the way home. My parents knew I was not well.
I’d told mum about my breathing issues that week.

“It sounds like anxiety to me,” she replied.

“But I can’t breathe. It’s physical. I’m not anxious about anything. Why would I be anxious at school, when I love it there?”

Mum had been an aid to a friend with anxiety, a friend who had hyperventilated so badly that she’d fainted and they’d called the ambulance. I was relieved to hear I couldn’t die from not breathing, I’d just faint and then my body would kick back into action automatically.

I struggled to breathe in the train, at dinner time, in class. I lost weight; I looked emaciated on stage under the bright lights in my performance blacks. My teachers told me over and over that I looked gray as I rudely yawned my way through their classes. They said, “Sorry Danielle, am I keeping you up?” too many times. I had a perpetual headache and had to will my limbs to move, to walk. I cried like an over sensitive child. My world was gray and I felt no joy. My school friends couldn’t grasp this – and as I had no proper diagnosis yet, they thought me grumpy and ‘over it.’ I couldn’t verbalise the overwhelming fatigue I felt. Everyone in Year 12 was ‘tired’, and I sounded attention seeking for claiming that my tiredness was in some way worse than theirs. “We’re all tired” they would say, and it was true, we were all working hard. I withdrew from people because that too used up precious energy. I spent more time with the school counsellor, having blood tests and at home. My doctor has said I was anxious, depressed and tired from the depression.
How could I keep rising at 6 am, practicing for hours and studying, when each waking moment was an incalculable effort? And what the hell was wrong with my body, and when would it stop letting me down?
But I limped and hobbled my way through, at great cost – much greater cost than I realised at the time. I was fragile, I was delicate. This was something that school holidays couldn’t fix, nor wishing, nor pushing through, nor defying.

I received a score of 98 despite the gruelling year and it felt good, but not very good. Who cares about being in the top 2% when you are a gray shadow of your former self? It was a high score yes, but hollow because my health had left me. All the success in the world couldn’t take away the pain of a broken body.

In the face of sickness, I could see clearly what actually mattered to me. I knew then good grades and a great career is not much of a life if your health is gone. Life had to be more than that. I also knew that people who suffer aren’t a different kind. They’re normal, they’re going about their life and then hard times come.  They can let it embitter them, or they can change and adapt and grow. That first day, I didn’t realise how much my life was going to change. But I’m not fighting change anymore, I’m trying to embrace it and I’m walking along knowing that while I have breath, each day matters as much as it did when I was well. 

Thursday, July 19


These days I can’t really remember what it felt like to be well, so I’m not always pining after it. I can go for months just plodding along, doing life and trying to climb over each mountain in my path. Feeling unwell is reality and normality. I’m not thinking every two seconds, 

“I have CFS and POTS. I had to withdraw from university and now I stay home and...Wow, all those dreams that I had...all the things I worked for...I wonder when I’ll get better...”

But then sometimes it just hits me. Out of the blue it seems. And I actually realise the full gravity of what has happened.

Tonight was one such night. 

I decided to look on the ME/CFS Australia site and see what the latest studies and research was finding. I was thinking a cure would be good?

I saw a tab at the top of the page:


I clicked it. Impulsive folly. I am always hoping that I will read something which fills me with hope. This evening I felt in particular need of a positive statistic to encourage me that I will recover. I just wanted to read a good cheer up line, saying that 95% of sufferers make a full recovery, most at the 3 years 6 month mark. People are always telling me that it’s just a matter of time, so I will regain my former vigour, right?

It actually read,

"Overall there is wide variation in the duration of illness, with some people recovering in less than two years while others remain ill for decades. Those who have been affected for several years seem less likely to recover; full recovery after symptoms persist more than five years is rare."
2002 study by ME/CFS working group

I actually felt my stomach drop. I’ve never had such a physical reaction to reading something. Those words, so matter of factly typed on the page sent my insides plummeting. Tonight is not one of those nights where I can’t look a life of illness bravely in the face. Counting the years might not be the best idea, but it’s been 3 years, 6 months. I’ve heard it so many times before, the longer one is sick, the less likely they are to fully recover. 

Now, a few minutes after reading it, I’m ok again. I know that I will just make my way through one day, and then I’ll do it over again the next day. I’m in it for the long haul and it’s a hard haul but I’ve survived so far. Maybe clicking ‘prognosis’ isn’t smart move, maybe I should just make myself another cup of tea, give my puppy a cuddle and read my book. Afterall, only God knows my prognosis, and I don’t need to know it. I just need to get through tomorrow.

Saturday, July 14

ask no questions, tell no lies

I tell lies at the hairdresser. Isn’t that awful?

I believe most women like getting their hair done at the salon – but I am not most women. I can’t appreciate anything about it until I am safely home admiring the outcome. I actually find it quite a detestable experience. It’s not just that I look so hideous with that black protective cape wrapped around me, my ugly head sticking up through the middle, surrounded by limp’s mostly the conversation with the person doing the cutting. 


It was a Friday afternoon when I entered the salon.

“Did you get an afternoon off work?” asked my stylist.
“No, I don’t work actually.”
“Oh, so are you a university student?”

I hate these questions, I hate that my life is so complicated to talk about. At this point I’m thinking ok Danielle, just say ‘I’m recovering from an illness, it’s a long story, I won’t go into it now’ and end conversation. But my ‘friendly people pleaser’ side takes over and derides all my plans for non-communication on this topic.
Check out my professional people pleaser post if you’re confused.

“No, I had to withdraw from uni. I’ve actually got a chronic illness...” I say in a near whisper, lest anyone else hear and want to chime into my interrogation.
“Like Chronic Fatigue Syndrome?”

Damn, you clued in hairdresser, I think. How did she pick it?! And from then on she wants to know all the intimate details of a life lived with this illness, when it might end, what I do to treat it and more. Delightful, she is, as she tells me it will end. That I just have to be positive because if I’m not I will get depression (what makes her think I don’t?) I really do appreciate her kindness, because I can see she’s a caring woman. But, I can’t bear discussing these issues with a perfect stranger however kind; I feel so very miserable and vulnerable as we discuss me and my illness; this is no everyday chit-chat at the hairdresser, this is my very challenging personal life which I foolishly told her about. Talking about university, my work place, the weather...oh for those to be things we could discuss! I long to be ‘normal’. 

By now I am feeling distressed and exhausted from the emotional drain of this conversation. I try to ask her some things, but she doesn’t take the hint. Not only does she keep asking more and more questions which I find nearly impossible to answer, I am thinking about my hair pulling issues. I can see how thin the hair is on the side of my hair that I generally pull from. I tense every muscle waiting for her to comment on the abnormal thickness of my hair in some places...tell me that I’m slightly balding somewhere...

“So how is your family coping with it?”
“Oh they’re very supportive, which is great.”
“Do you have a boyfriend?”

My heart sinks. Not the boyfriend question, please! Before I have time to think about it, I blurt out,
“Yes, I do.” There it goes, the lie. Now she thinks I have a boyfriend because I am feeling  so uncomfortable and frazzled I can’t bear telling her that I actually have a husband – I have not the fortitude to endure all those exclamations of how very young I am blah blah blah.

“Oh that’s nice. Do you live with him?”

“Yes,” I reply, and then remember that I’m wearing a big engagement ring and a shiny wedding band, which will expose my lie shamefully if she sees it when I pay at the counter.
Underneath that black cape I usually so detest, I carefully slip off my two rings without her noticing. These are desperate times. I place them carefully in my coat pocket, relieved to have removed all traces of the truth.

She finishes off my hair, and being very satisfied with my tidy locks, I hurry out of the chair and pay. As I withdraw my credit card at the desk, I see on the front the bold words:

Mrs Danielle S Martin

She takes my card, and I wish with all my heart that she will not see the Mrs. Please no, don’t let her read the card and discover the discrepancy. My relief is immense as I half run from the salon, and not until I’m a few meters down the road do I pull out my two rings and slip them onto my naked finger. 

My husband and I laugh hysterically on the way home as I admit to taking them off to save face at the hairdresser. The worst thing is that I have done this before, at a different hairdresser. I only do it at the hairdresser, which I think shows how very stressed I get. I wish with all my heart that I had handled it better. I also wish that hairdressers didn’t need to converse - what is wrong with a pleasant silence? I think it unlikely that hairdressers will change in this regard, so I have decided I will do the changing, and have resolved afresh to learn to give a closed answer about my health so as not to become so very distressed. I did role plays with Ben for the next 30 minutes, practicing over and over closing down the questions about my personal life – he pretended to be a hairdresser, a stranger at the gym, a sales assistant and I, for the millionth time said confidently,

“I’m actually recovering from an illness. It’s a bit of a long story, I’d probably rather not talk about it.”

I’m grateful for such a terrible trip to the hairdresser; it motivated me to seriously prepare for future conversations. I feel empowered, ready to face these questions with a sure reply, a confidence that I am under no obligation to talk about my private life. No more lies at the hairdresser!

Sunday, July 8

survival of the weakest

I didn’t know what to write for some time. I didn’t feel like documenting the hardness of the day to day survival...everyone knows that sometimes dull and endless rhythm of getting through one tough day, sleeping, and then repeating again and again. Actual laughter, the suffocating and nearly wetting the floor variety, which is so common for me, was stifled, smothered and replaced with a similar yet opposite emotion requiring tissues. Survival of the weakest; this best describes this period of time. But this weakling did survive and two things were literally god-sends to make a weary soul smile.


One was a lady at my exercise class. She stands out from the all the rest – she isn’t attired in Lululemon and Nike lyrca, with bleached blonde hair and make-up like most of the Ivanhoe women. She wears daggy ¾ length pants, with a sloppy t-shirt, her black hair in a girl-like bob. I’ve no idea how old she is, I never can gauge age very well with Asians, but perhaps she is late 40’s. She stands out not just in attire, but in ability. She is so very uncoordinated, always executing the aerobic moves slightly behind the rest, in the most hunched over and jumbled manner – often completely lost in fact. I glance over at her, and see her face filled with the most irresistible smile I have ever witnessed. There is no shame at struggling with the choreography; there is just pure joy of moving to upbeat music and learning new things. I cannot possibly contain my smile when I witness hers because it bubbles up inside me. The faster the steps and the more dance-like, the more her beautiful face beams and she sometimes giggles like a little girl. Meanwhile everyone else has their “I’m concentrating really hard, don’t look at my sweat, I’m a cool person” contortions plastered across their faces. Intent on perfectifying their ‘hot’ bodies they are nothing on this most precious lady. I wonder why she comes to the gym every day, is it for the joy of it or is she unwell too? I feel privileged to be in her classes, because she is like sunshine pouring into my lounge in the morning or a drink of tea at the end of a long day. 

The second thing helping me survive was the ball of fluff which now resides in our small top-storey flat. He pees, and poos, and cries like a true baby, all of which are excessively wearying. But his reaction to me in the morning is enough to wipe away the memory of the hard work he sometimes is...Ben takes him out of den and he looks around to see me lying in bed. Immediately he wriggles violently in Ben’s arms, and so Ben plonks him on the bed to say hello to me. His tail wags exuberantly, and he is a ball of excited joy as he licks my face over and over, apparently delighted to see me. Why does he love me so much? Me, who often feels like such a nuisance or failure for lying on the couch endlessly and ‘achieving’ nothing. Wolfgang doesn’t care a scrap for those things, he cares that I cuddle him and nurture him. He is my most forgiving friend, and never has anyone been so delighted to greet me. Unconditional great love is the gift he gives me, and so every day begins with a smile.