I couldn't do that

anon.

I grabbed a pair of rubber gloves and took my $100 stockings into the bedroom. I’ve never spent so much money on something so unappealing. Their shade is not like any skin tone I’ve ever seen – it’s not my ivory shade, nor is it tanned, but more like muddied river water. After I saw them, I promised myself that if they were uncomfortable or gross, I didn’t have to wear them. It was ok to back out. This was a trial.

I was determined to get them on without help, and so I began to insert my foot through the miniscule hole which was the ankle section. I sat there yanking and tugging and soon got my foot stuck in the ankle tube, worrying it would lose circulation during this potentially long delay. It looked a lot like a bound Chinese foot stranded in there. By the time my foot made it into the sock part, my hands were sweating in the gloves, making it hard to keep them on.  I took a little break after that victory, and decided that my cardio for the day was done. This was an intense task. Eventually they were hoisted above my stomach button, and I stood up.  

I felt springy. Far from uncomfortable, there was this feeling of being contained, light and strong. It dawned on me that I may never want to take them off. In a split second I had gone from vowing to only wear them on warm days at home, maybe, to coveting this improved vitality for all the days. Who cares about being hot if I feel springy? And what’s a muddied foot or limb in view compared to this functional and surrounded sensation?

Just as I rarely grieve the foods I can’t eat, I realised that I cannot grieve these thick pantyhose, because they bring good. So many times I have heard these words: I don’t know how you can not eat gluten and dairy and sugar. I don’t know how you bear to stay home. I don’t know how you can exercise when you feel so unwell. Maybe soon they’ll ask how I can bear to wear hideous tights.        

I couldn't do that, they say.

It’s so incredibly simple. I make decisions to live as fully and as well as I can. The alternative to each sacrifice is always worse. If you are in enough discomfort, you will seek change in ways you never thought you had the strength for. 

We do things because life is important, and our body is our vessel. 

the beige pantyhose decision

Photo by Mark Shaw, 1953

I like old buildings, gardens, light rooms, special book editions, people watching, photographs, intriguing artwork, concerts, fashion. An old Singer sewing machine stood in the lounge I grew up in, elegant and unusable, but not purposeless. I remember dabbing raw blisters with methylated spirits after ballet, but it was a sacrifice I made gladly for dancing en pointe. Ben and I drive to a further suburb to walk Wolfie amongst the villas and gardens, for the visual pleasure of those streets. Aesthetics enrich life, and I lean on the side of favouring them over practicalities on occasion.

It is ironic that I now exist in a state of aesthetic normality and functional disarray, and I despise it. You would think this is the way around I would have things. I have lost count of how many people have commented on my healthy looks and youthful externals. I may look fine, but what would I give to have a functional body instead? Would I give up my outward normality for energy and vitality?

A related question has arisen since my diagnosis of POTS. My stretchy blood vessels facilitate such good pool parties down in my legs and feet that the blood is slow to return to higher regions, leaving me with a dizzy head and malaise, soo much malaise. According to my specialist, I’d be better on all fours, like some kind of less evolved human.  All the exercise, and salt, and medications have improved me, but far from fixed me.

When compression stockings were mentioned a couple of years ago as a way to improve my quality of life, I put them in the not-ever-doing-that basket. I’m not eighty, with protruding veins. I’m not wearing thick nasty stockings throughout summer and forgoing dresses and shorts. I’ve changed my occupation, diet, social life, future dreams – I think I will just keep my freedom to wear whatever I like, thankyou very much.

But currently shipping from America is a pair of hideous beige medical compression pantyhose.

In the end, I would rather stand and more than exist, than lie around with bare legs on a summer day. In my wardrobe there is no skirt or dress that reaches below my knees. Assuming the tights improve my functionality, I will have to change the way I dress radically, and I find the thought distressing. But that’s just my aesthetic nature holding on tight. If I really do feel more alive when I wear compression, I don’t think I’ll be lamenting my maxi skirt, because on occasion, function wins hands down.

Also: Audrey Hepburn. Radiant in long. 

project e l k e

I haven't stopped sewing on my medium to high quality days. We still can't eat dinner at our dining room table because I have covered it in thread and paint. I have taken to calling the space my studio, which makes Ben laugh because I already have our study for that purpose. But I am a lightbug and a scatterer, so I have spread out by the windows.

I have been making clothes {as yet unphotographed}, but mostly I've been using fabric paint and zips to make pouches, leather based clutches, and cushions to take to market. I'm aiming for an artisan market, but Etsy and Instagram are lurking in the back of my mind for later, in the phenomenal case that I actually sell something. It's an alluring, vulnerable and motivating project, and very suitable for my home-is-best and learnt-to-sew state of affairs.

You can be utterly upended, and lie winded for a long while, but then you find that of course there wasn't just one thing for you.

e l k e .

p e a c h

m i n t 

h u n d r e d s & t h o u s a n d s

t r i a n g l e 

a n y t h i n g  b a g s 

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?”