first do no harm

First do no harm.

This is a latin principle historically taught to physicians. In the past I have been attracted to the gentleness of this phrase, and empowered to refuse treatment which I deem more destructive than beneficial. But it was recently that I decided to adopt it as my favourite maxim.

It was a bad day, a day where the fatigue and pain were severely interrupting my usually-manageable activities. The old record began to whine in my mind, with belligerence. ‘I can’t believe I can’t get anything done, what a waste of existence.’ ‘Just make yourself. You’re lazy which is why you think you’re unwell, and you could get up if you tried harder.’ Long was the day, loud was the disappointment, strong was the discontent. To soothe the pain and the unjust reprimands, I sought comfort in the form of hair pulling. Much later, Ben walked in to a pile of hair, and a rocking, sobbing, sadness.

In the end, I wasn’t as distressed by my sickness as by the way I had handled it. I deeply regretted that I had turned on myself {and my extremely undeserving head} and multiplied my woes.

By providence, my friend sent me a long email filled with love and too much wisdom to write here.

She wrote:

Please extend to yourself the same kindness you extend to me. You will find that you are the most gracious, considerate, strong, interesting and wonderful person you could ever want to meet.

I shudder to use those adjectives for myself, but the first line was startling.

What if, when I was hurting, or disappointed, or anxious, what if I played an empathetic track? 

Opportunity for practice soon presented itself, bien sur, and I was facing a day where I would be alone and mostly couch bound. It was a little strange to extend compassion, and I felt like a positive psychology experiment.

I found myself walking up a long hill, feeling dizzy after many vials of blood had been extracted from me. I noted that it was a great feat to have gotten my blood tests done on such a challenging day, and that I could enjoy tea when I got home. I lay on the couch, and thought: I’m not lazy nor a hypochondriac. No one feeling this way could move, let alone work. I’ll know without a doubt when I’m feeling well, and I’ll do good things that day. I thought about John Milton’s poem, the line, ‘He also serves who only stands and waits.’ I acknowledged that I was doing well with no pain relief.

Late afternoon the sun eventually beat the clouds, so I went to bask in it and celebrate making it through the bulk of the day, with all hair intact, and lack of agitation. Ben walked in the door, and I was doing some plies and fondues in the sunshine. Same headache, same malaise, same lack of achievement as the other day – but this time, there was no trail of destruction. I hadn’t done what I wanted to, but first, I had done no harm. That night, I was UTTERLY content in having just lived through the day.

Why do we kick ourselves when we’re down? First, do no harm. 

found

the hangover diaries

Unkown

I have a patchy and sporadic grasp of contentment. And it’s conditional. I will be content if my situation reaches my pre-determined ‘ok fine, that’ll have to do’ mark. But if something is just too far, too far off my scale, I throw my hands in the air and abandon the whole notion of ‘content’ as though it is entirely unreasonable to expect it in this situation. And then this omnipresent voice whispers to me, “But what if it’s true that suffering only leaves when it’s taught you what you need to learn? Then you will never be well.”

There is real peace about having had to curtail dreams, and reinvent life as I knew it. But after many years, I am tired of nurturing my health in the quietness of my home, and moving with weariness between the worthwhile-yet-boring pursuits that fill my days. I may not watch TV and binge on cake {actually, the cake bit is true} but when I climb into bed at night there is no sense of achievement. So, the house is clean and I made something for the market, what a life. The monotony is drab, my contentment dull to non-existent.

Enter the headache. I hope never to have one again in all my days. It started as they all do, with a wild weekend – seeing two separate lots of friends and vegetarian curry. But it didn't end with panadeine, water, and a dark room. No, it didn't end.

It was still there the next morning, and the next morning, and the next morning, and the next morning, and the next morning, and the next morning, and the next morning, and...the next five.

At first I was stoic and brave, though that phase was short lived. 

By day four I was frustrated and disheartened by the ‘endless’ ache. Like, what do you mean it won’t go away with chinese heat patches and hot showers and massages from Ben? Ben located the script for my old migraine relief drugs, to my lively squeals, but it had long expired.

On day seven I was perplexed and angry, and went to the doctor. The trip worsened the pain.

By day ten I was depressed and desperate, and went to the ‘manipulative therapy’ physio with the expectation that he would end the saga. Or else. After my session he said that I would have to wait five more days until my second treatment, to let things settle. Five?! I wailed to Ben. I won’t be alive in five days, so we have to sort this out sooner. Web MD didn’t say headaches lasted this long. What if this is the start of a brain tumour which is why no one can help? I went home in full scale despair. I thought that it would never leave because nothing was taking effect. Day ten felt more like month ten, and I truly wanted to die in my sleep, remove my head, or throw china plates.

Day eleven was more of day ten. I think I only mopped the floor, which obviously didn’t inspire.

Day twelve, I woke up to the sun shining and this bizarre feeling that I wanted to be alive, that there was hope. It coincided with beautiful friends praying for me and encouraging me, and it was that day that the pain started to reside.

The next day was a Saturday, and I have a special dislike for Saturdays where Ben has to work.

Not this one.

I woke up with clear vision and a mostly pain free head and thought: what shall I do? Make something for the market? Read? Exercise? Bath the dog? I can do anything. Intoxicated by the options, the irony crossed my mind. The dull existence of normality was now sparkling before me. 

Never mind a world changing career, I’m a thinking moving human who just saw the beauty in what I usually do.

I don’t expect to remember this for long, but, on pain of headache, I will try. 

Now, back to my not-so-dull reality.

out of the fire, into the frying pan

found.

Spring came. I cannot believe it arrived. I know in my head: spring after winter, but I still cry when it comes and I physically make my way out of my dank glandular ridden dungeon. I cry because of the contrast; it makes me squint. I long for metaphorical spring to stay once seasonal spring has ended. Even my jaw which has been painfully locked for six months came loose to my shock, and I could have celebrated my improvements by eating something raw and crunchy, but I went for daffodils on my table and excitement.

In this too-good-to-be-true state, something familiar and unwelcome loomed over my joy. Anxiety. People wonder if that means I begin to feel worried about things, normal or irrational, but that would be too simple. I feel no fear, no worry. It’s hard to reason with a mind that knows no reason for all of this. Years ago when it began, I had no idea it was a mental state. I very seriously told my mum I was concerned about my lungs because I couldn’t breathe properly at school.

I go around to catch up with my family, the people I am happiest around, and my body trembles uncontrollably as I ‘relax’ on their couch. It’s my seventh year of driving a car, but my autonomic ability to breathe is lost as I struggle to inhale and exhale, keep my vision from blacking out, ignore my racing heart, and actually steer. I revert to wanting to tear ALL my hair out because it’s soothing at that moment, and I am teary when something miniscule goes wrong. I’m all taut and snappable in my heart when before I felt stable and unflappable. When I’m asleep, I am captured in the high attic I am hiding in. I’ve been here, done this, don’t like this. On my fridge is my star chart entitled, HAIR IS BETTER, a rational concept for an irrational desire. My self control is rewarded with fabric paint, which is obviously extremely motivating. On my knitting needles is a new project to occupy my hands. In my calendar, an appointment with my counsellor and psychiatrist.

When it came back after its long absence, I started thinking of myself as a mess. Messy, tangled, confused, brittle and guilty for needing help again. It struck me that I don’t feel guilt about CFS or POTS, and anxiety is no more my choice than they are. While I advocate for mental health struggles to be as stigma free as physical health struggles, I am ashamed that my mind is out of my control. Subconsciously, I hold the view that I should be able to switch off mental discomfort quickly, but accept that I may need help with physical discomfort. I have to drop the belief that it is a personal failing if I struggle in mind, but not in my body. As I write this, I am not content with the terms ‘body and ‘mind’ because the two interact so completely. My being and journey have lead to this meaningful uncomfortable response, and that is not crazy but rather indicative of how intricate I am.

As a courageous woman who hears voices says in her TED talk, the important question of psychiatry shouldn’t be,

“What’s wrong with you?”

But rather, the more compassionate,
“What’s happened to you?”

the soma swimsuit

I am celebrating four weeks without a glandular fever flare up with some sewing. To be able to sit up straight concentrating for a couple of hours each day is infusing me with joy - that, and the spring air which is whispering to me that better days are here. My heart feels like it will explode with relief that the lighter months have come, the illness ones receeding. I make sure that I inhale my daphne at least twice a day, and stock up on sunshine.

A few months ago, my sister spied this magical mermaidy fabric in the sale bin at The Fabric Store. I decided then that I would make my own swimsuit, as soon as I had the skills. Usually retailing for $28 p/m, I got 0.7 m for $5.

The photos do not capture the shiny scaly shimmer of this print. It is my favourite fabric to date, and the best bit is that I didn't massacre it and therefore will be able to wear it all summer.

The Soma Swimsuit pattern was marked 'skilled', but I decided to go for it despite my decidedly beginner status. I thought I could manage it after making a couple of intermediate patterns recently. It came with clear instructions and diagrams, and I found that Papercut Patterns had put out plenty of photo tutorials for it. I made the Variation 2 bustier top, with high waisted pants.

The XXS small fits me perfectly when on - but getting it on and off is frightening. The first time I tried to get it off I thought: halp, I am going to have to cut this thing off me! It would not budge past my shoulders without creaking. At a later fitting I left a couple of pins in the back, and because it was so tight and twisted going over my shoulders, the pins drove right into my flesh. In my panic, I had this image of me in Emergency wearing an unfinished bikini, for pin removal. That image inspired me to take a deep breath and inch my way out of it. Next time I will size up the back for ease of dressing.
However, it is the loveliest print and fit I have ever worn, so I will gladly spend three minutes dressing myself.


I also made my third version of the Moss Skirt by Grainline Studio. This time, it was in a luxe black wool that I got from the Alannah Hill outlet. Neither of my earlier attempts were as good as I hoped for, but this one came out as close to perfect as I hope to get. The fly worked , the fit was a dream, and the hounds tooth lining was just right. This experience reminds me that if I don't manage it the first time, it doesn't mean I am incapable of it. It means that I have to do it several more times before I do manage it.

hump day wisdom

don't do it

We had an inexpressibly wonderful time away. It was a mixture of having each other’s company all day long, and no responsibilities. It was blue and white mountains and clear lakes, and doing whatever we liked.  It was the fact that after the first week it wasn’t nearly over. It was a body which functioned more normally, and accepted alcohol, and slept soundly, and groaned less.

When we spoke to people, they didn’t ask what we did for a job. They asked where we were from, and there was a simple, easy answer to that. We talked about New Zealand, and Australia, and snow fall, and beautiful places. I was free from telling strangers about personal things, and free from my house of tired memories. I cried when I came home.

Very soon after our return, I found myself sitting in a doctors reception for the first time in 2014. Butterflies, and frequent bathroom trips reminded me of the past six years endless of doctor trips. The GPs were running late, and the room was filled with the elderly, all except Ben and I.

There was one particularly vivacious old lady sitting near us.

 “Everything in your body just stops working when you get old. It’s dreadful! But I shouldn’t scare you,” she said winking at us. Everyone turned to us with wrinkled smiles of warning.

“You’re young and life is still exciting for you, and don’t worry, you have many many years before you will get here. And we had fun when we were young too. A lot of fun.”

“Oh yes, we did! “ Chorused the ladies and men around her. When their bodies worked, they had fun.

 “You do have to get used to these very long waits before appointments, you spend a lot of time here when you get old like us,” she said with another patronising wink at us.

Her superior ‘you couldn’t possibly understand’ tone and her ‘your life is a breeze’ winks grated against my decrepit body. I had a slight urge to break to the whole waiting room how mistaken she was in supposing that my young face was attached to a functional body unaccustomed to waiting rooms, discomfort, unemployment and the pension.

Speaking of the places she had spent her life she observed that “You want to move around when you’re young, but I just want to stay put now. It’s such an effort to move.”

Oh no, not everyone wants to move around when they’re young.

And then she said, “What brings you all the way out here?” for we were seeing a doctor thirty minutes from home. It must not have dawned on her that I was obviously here because I am unwell, and obviously here because there was a doctor I particularly wanted to see.

My new doctor eventually called my name, so I stood up and the old people waved a warm goodbye to my young husband and I as we went to discuss my old problem.

The old phrase, 'Don't judge a book by it's cover' echoed through my mind. 

Just don't. Ever.