post captivity complications

I don't want to say that I'm an efflorescent butterfly because then people seem to say things like 'I'm so glad you're better forever', and 'Now do every thing because you're a butterfly'. And then they get shocks like,
'But you said you were a butterfly, yet you seem to be in a cocoon, I'm so confused, did you mean moth?'

Life is in, out, up, down, waxing, waning. Serious waning for all us crescent moons. But we wax too, and I am increasingly convinced that we must not only converse about our woes if we want to accurately share our lives. There is a time to bawl and a time to squeal.

Some days, I'm a butterfly. After being a guttingly grovvely caterpillar for two years, it's surreal. I'm a butterfly, in the way that a clip-winged butterfly can be, if I'm calm and gentle, ever so calm, ever so unstimulated.

I don't quite know how to feel about not waiting by the window in a crumpled mess for Ben. For getting his message "The case has gone over I'm sorry, I'll be a little bit late," and thinking, well that's ok, I'm still able to stand, I'll chop the beans. I don't chop food, so it's a bit weird. I did the dishes, cared for my child, strolled for an hour, and chopped beans? Then I sat up (versus slumped on the couch) to eat dinner, in our sun drenched dining room.

It's a bit too glorious to feel that okay.

The trouble with butterfly days is this: I know it won't last and minute shards of sadness zoom around because I want to feel like this forever, because the relief is too excruciatingly nice, and the contrast seems all the more glaringly piercing.

I'm a living oxymoron when I'm euphorically pain-free, because my heart physically aches.

Is it actually good for a bird from captivity to fly in the expansive sky and then be returned to its cage? I lean towards, yes, its better than captivity it's whole life. But oh, going back in the cage.

I didn't know if other human beings also feel what I'm inadequately describing, for it doesn't come up in conversation.

But I found the answer to my question in a book I recently read:

Perfection is beyond the reach of humankind, beyond the reach of magic. In every shining moment of happiness is that drop of poison: the knowledge that pain will come again.

Dumbledore, J.K.Rowling


I had an epiphany reading that: I am seeking perfection once again, this time in emotions. Perfection is truly unattainable and mixed emotions are not my solo struggle but a universal reality. I always feel that the earth embodies these realities, and weeds springing up by daphne and jonquils and jasmine is proof.

The weeks that followed this passage were ones where I mulled and ruminated, granting myself permission to feel relief with a sprinkle of grief for the past and future. I felt a lot more peaceful once self recriminations for heart shards were removed. I thought, perhaps every joy is tainted because of the fallen world? It struck me as a fairly miserable thought, that every happy moment had to be part sad. I needed more reliefs and elations to test the theory on.

Out of the hopeless blue, one arrived. Our impling slept for nine hours in a row. No letters to warn me of her plans, no gradated steps. In this matter of sleep, I had finally annihilated my expectations, because it was the only way to be content. I had decided that the poison of expectation was not doing me any good, and I'd slowly picked it all out.

We had goofy shocked faces that morning. 'How could this happen to us?'

She might do it again in another six months I thought with ineffable happiness, high expectation me having done a solid 180.

Two nights later she did it again.

Deep sleep deprivation and ensuing pain will come again, but my joy was weedless, and curiously I don't have a sore spot under my left rib thinking about it. {When I say weedless joy, I refer to the following day. The actual night I lay on my bed worrying she had suffocated and died, and I strained to hear a cry, please, I just needed to hear a cry.}

Maybe heart shards during relief are a peculiar experience reserved for the heavy grief of eight years of mostly unrelenting illness?

Perhaps many joys will be less tainted by sadness, with a quarter drop of poison versus a dollop, with just a lightly held mental recognition of the transient nature of elation.

I cannot curse transient elation, for the same principal promises transient pain.

Nothing lasts forever.

Except eternity, and I have a feeling I will never tire of an earth free from poison.

chinese secrets

"To know even one life has breathed easier because you have lived. This is to have succeeded."

Ralph Waldo Emerson

I first met Dr. Lim a year ago. I am so very fond of him and his smiling Asian face with Howardesque eyebrows. I look forward to Saturday mornings with him – yes, frightened me, who develops a telltale nervous rash and wants to vomit or bolt at the western doctors. From herbs, to manners, to common sense, he has taught me many things.

“Come in Mrs. Martin. How you feel? Any better?”

Dr. Lim is so delightfully caring. He genuinely gets excited when I’m doing well, and concerned and sad when I’m not. I have no fear in telling him how I’m going because he won’t shrug off anything that I say lightly. He deals with the whole of me, from muscles to mind, and respects my feelings and emotions in a way I rarely come across.

Many doctors sit there coldly and then declare there is nothing they can do for my condition. Then they smirk when I mention that I’m seeing a Chinese Medicine doctor. They bemoan the use of my money on something that obviously won’t work if they have declared my condition is untreatable. I wish for open minds and love in the western profession.

“Drink warm water, is good for you.”

For a couple of winters my immune system was a nightmare, permitting me 5 day breaks between colds. Dr. Lim suggested that I drink warm water. He told me that when cold water goes into the body, it naturally cools it down and the energy required to warm it back up takes away from its ability to fight off viruses.

Since switching to warm water and boiling the jug a trillion times a day, I've only had two mild colds in a whole winter. It’s an incredible change. Sometimes you don’t need a pill or potion, just some smart body sense.

“On sunny days, go for walk outside.”

To keep myself from fainting, I've had to exercise very often for the last few years. I diligently go to the gym because I've been told to, but, eww. After I moved to Geelong and felt the low mood cloud descend on me, I opted out of trying more antidepressants {after a hellish experience coming off them last time} and instead took Chinese Herbs and sunshine. The choice is unshowered dripping males and fluorescent lighting, or fragrant spring flowers and sunshine. I'm still amazed at how joyful I feel in the sun, smelling flowers - it's a merry combination.

“Eat yoghurt for this problem, you feel better.”

Recently I had a bout of tummy bloating, severe heartburn, and other unmentionable bowel dilemmas...I expected him to give me another bottle of herbs for this issue, but instead he said to try yogurt first. As I can't tolerate dairy, we decided on a probiotic. His intuition was right on, as it immediately settled things down. I do love a simple pharmacy or food solution and avoiding a trip to the white coats.

“I have something make it go away. Be all better.”

I came to Lim after two trips to the physio which hadn't solved my neck pain and headaches. He came back from his store room with patches to put on my neck and back, containing strong herbs like Menthol and Camphor. I wanted to believe this would help, but after an unsuccessful week of treatment at the physio, I was fearful of ongoing pain. I skeptically put the patches on, and in 3 days I was pain free.

We can't underestimate the importance of easing another's burden, even if we can't take it away. I was dancing around the house over joyed to have one less pain on my plate.

Smile often

Dr. Lim and his son who helps him smile continually. They absolutely beam. I've never met such smiley people in my entire life. From the dozens of 'you feel better soon's' to the 'we find something just right for you's' I feel a warmth which is delightfully refreshing for a jaded appointment attendee. After my appointments they usually chat to Ben and I for quite some time like we are their friends - about our lives and their lives, and always with lots of laughter. I've never left without the smile they gave to me in the room.

They don't worry about being 'professional', a word which has come to feel so clinical and cold to me. I feel they embody what doctors really should be - caring, affirmative, and eager to reduce pain.

"Tenderness and kindness are not signs of weakness and despair, but manifestations of strength and resolution."

 Kahlil Gibran

surprise holiday in august {and a pianostool diy}

I’ll never forget my first holiday with illness, because it was a major let down.

I thought the holiday would be a reprieve and a chance to get refreshed, and I thought I needed it more than ever before.  But I soon realised that the best thing about holidays is leaving the hard work at home...and when the hard work is your own body, it comes with you. I could not believe it had come; I couldn't believe my body wouldn’t let me have a few days off. I know it is super naive/illogical, but I truly thought I'd feel better while I was away. I spent the whole holiday shocked that even the cruisey life was difficult.

All the old ‘leisure’ activities had lost their leisureliness. Reading a book was not so easy, and watching a movie hurt my head. A trip to the beach was exhausting, and catching up with friends was a demolishing task.

But I've been given a couple of weeks off just recently, and I've been experiencing the crazy goodness and beauty of leisure which actually feels like leisure. The necessity of showering and dressing hasn’t taken it all out of me, so I can enjoy my book thoroughly. I made my own lunch and baked a cake afterwards. I saw two friends in a week and didn't end up in bed. And Ben and I did a project (as in, outside, standing up, kindof-manual-labour) that we’d wanted to start two years ago but never could because the basic things used up my everything.

I’m actually on holiday from my body at the moment, and it’s so good I'm weepy. 

We got this piano stool for $10 in a garage sale two years ago. And it was gruesome brown paint with stained yellow satin. We sanded it by hand, painted it cream, re-upholstered it with natural jute from Spotlight, and now it's feeling fabulously shabby chic. 

never think never - thoughts on getting better, finding love, and whatever else.

Endlessly sick.

I feel it’s endless, but of course it’s not. It hasn’t yet been 5 years. 

But because I can’t see the end, I think there won’t be one.

Last year we bought home our precious dog. He is my fur kid, best friend, blanket and all day entertainment. The novelty is yet to wear off. Of course we wanted a good doggie, so we took him along to puppy school and read books on training.

His extreme excitability meant we moved at snail pace through obedience school – he was the vocal, distracted, bark at the other puppies, dig holes, sit the wrong way, and ignore commands kind of puppy. He was the puppy who had to stay in pre-school while his peers were moved up. If he were human he would certainly have been diagnosed with Attention Deficit Hyperactivity Disorder. 

Ben wanted to quit after two weeks. We walked away with our eyes averted because he was so mortifyingly yappy and squealy. But our trainers said he would get there in the end, he was just a young hyper crossbreed. I kept asking them every week, are you sure? Are you reeeeally sure? Because I see no progress.

We were determined to train him to heel at our side on the left, as is recommended for leadership reasons, rather than let him pull us along tractor style. The romantic evening stroll turned into night time training terrors. No more, ‘How was your day babycakes?’ and a lot more, ‘HEEL Wolfgang!’ He would pull again two seconds after his last correction. I would come home with blisters on my hands from restraining him. The last few months, hope of him ever walking without pulling waned. I was contemplating allowing tractor style and giving in on all training philosophies. Is there anything worse than effort put in with no returns? {Ok, probably. But, it’s fricken annoying.}

And then it happened, seemingly out of nowhere. The first time he walked by my side, no tugging, no blisters, I thought it was a fluke or serious illness. But it happened a second time. And a third. His was not gradual progress over a year; it was as though the light bulb finally went on inside his stubborn fluffy head after 12 months of rebellion and he’d figured out that it was in his best interests to heel. He has occasional silly excitable days where heeling does not happen, but this is now the exception.

Whenever I walk him now I think to myself ‘that might be what happens with me’. I’m going to struggle along and feel like I am going nowhere at all. And then one day, the time will be right. My body will just start to function like it used to. I don’t get the power to decide this; but it happened like that when I made massive progress last summer – swift and magical. I was so shocked by my improvement that I cried often; I thought it would never happen. There’s no warning bell for life events: today you will meet your life partner, today you will conceive your long desired baby, today your health will turn the corner.

It’s illogical to think that because it’s not happening now, it won’t.

Never think never.

words for wednesday {page 3, crochet & bunting}

“Don’t judge each day by the harvest you reap, but by the seeds you plant.”

Robert Louis Stevenson 

“Man is born free, but everywhere he is in chains.”

Jean Jacques Rousseau

I am definitely in chains. I think we all get entangled by nasty things.

In one good book I have been reading called ’From Fatigued to Fantastic’ {who wouldn’t want to read that?!} the recovered doctor says,’ Stop shoulding on yourself.’

I just loved this phrase, because I ‘should’ all the time and it’s one of my chains. I tie myself up with living up to perceived expectations. ‘Should’ implies a moral obligation, and there rarely is one. Usually I end up crawling back into bed, sad and exhausted after everything I've made myself do.

Dr. Teitelbaum went on to say that when you have little bits of energy or time, you’re wise to do things that you enjoy.  Last year, I started doing something I enjoyed and felt good about every single day, and it was quite crazy to see how it fostered my improvement. I actually felt enthusiasm for life again!

Honestly, try it. Just do one thing a day (or every two) which you really enjoy. Something that there is no 'ought, must, should' attached to. I think it is excellent for health purposes. 

Here are some of my little happy projects at the moment:

I usually hobble round in the winter months dressed like an Eskimo. I also have a pixie cut which makes for scary morning hair, and post afternoon-nap hair. I decided I needed something cosy to chuck over it if I need to pop out or answer the door without having time/energy to tame the crop. This pattern which I found here is super easy, perfect for beginners. Ps. Did I mention that yellow is my new favourite colour?!

I’ve wanted to make some bunting for our lounge for quite some time. This is the fabric I have chosen, and I am in love with the ‘woodland walk’ one.

waking up and getting out of the house

Found

I had one of those days where lifting the cup to my mouth was hard work. Where the question was shall I wipe down the filthy bench, or get in the washing so it doesn’t get wet for the 3^rd time? Forget about flute practice, that heavy piece of silver can stay sparkling on its peg.

Instead I took a trip down memory lane, as you often do when you have hours of you + silence. When you are occupied, you don’t have to do very much of this thinking thing. In a very odd way, it was good to have such a physically low day {though, can we just keep it at one?} because it reminded me of how I used to feel and what I have forgotten. The very things that I want to always remember, and never take for granted, I forget. Memories fade in time, especially if you don’t recall them often. I didn’t think they could, but they do.

I have discovered that as life gets easier, I become unsatisfied with the things in my better life. My daily struggles are milder than they were, but still with me all the time – and so I focus on those milder struggles, and though they are lesser, they preoccupy me just as the greater ones did. That’s why the healthiest individual with no want for income or work can be miserable, because you can always find something to be unhappy about. That’s why someone whose life is easier than mine can  still find it incredibly hard. I am definitely not unhappy (infact, I think I’m the happiest I’ve ever been) and I feel grateful most days for the progress I’ve made, but my gratefulness has become less sharp – my appreciation for small mercies is not as heartfelt as it first was. I don’t celebrate as I do the dishes anymore, or smile as I lift my hands to wash my hair, and drive the car. I don’t even remember as I wash my hair that I didn’t used to able to. I remember the migraines I had, but forget how far I’ve come with anxiety and stomach pain. It’s perfectly natural that I would be adjusting to my new dose of health, but I hope I will never forget the joy of walking to the letter box and feeling more than just a painful slump of body. I don’t want to forget, that’s the thing. I don’t want to be so preoccupied with today’s tired that I forget I’ve come from yesterday’s exhaustion.

Why would I want to forget the things which made taught me so much about people, and pain, and the fact that life is less about achievements and more about moments? Things got rather in focus when I was most sick, in a very sad, very hard sort of way. 

Found

At the same time, I don’t want to remember too much. You’re supposed to enjoy your honeymoon, aren’t you? And fondly remember the first house you lived in with your spouse. But I was so glad to have a fresh start when we moved from that first house. It didn’t hold happy memories. I never feel good when I visualise the house – the lounge reminds me of couch, and crying, and the bedroom reminds me of hours in the darkness. As for the honeymoon, the only good part about it was that I was with Ben 24/7, and the rest was a kind of deterioration nightmare {just because you are on a honeymoon doesn’t mean it will be very honeyish or romantic}. 

It’s not about getting depressed or reliving the hardest days of my {short} life, but putting things back in perspective. What a cliché! But really, try being really not well for a long period of time, giving up some big dreams, being a bit of a social outcast; that’s when you realise how caught up you were in the extras without even realising how precious the fundamentals are. Like, waking up and getting out of the house. 

And because I’m supposed to wake up and get out of the house tomorrow, I will close here with the mental reminder that if I manage it, I will celebrate it.

 

yoga confessions

i have a confession to make. i was drawn to yoga because I knew they lay down in the dark, with their eyes closed, for a portion of the class {in sanscrit, it’s called savasana or corpse pose}. my motivation actually had nothing to do with stretching or strength. it all began with going to Bodybalance, a class which incorporates aspects of tai-chi, pilates, and yoga. that’s where i learnt about yogic ‘nap-time’ at the end of class, and i will never forget how delighted i felt when the instructor told us all to lie down and get comfortable. some of the older participants got so comfortable that they started snoring like tractors. i don’t know if this is normally the inspiration for yoga, because i don’t go around mentioning it to classmates who could well be there for more holistic reasons, but when you think about the fact that my whole illness is about being exhausted, it makes senses. 

that’s what got me in the door, pure laziness. so you can imagine my first time, when i learnt i was going to have to work for that smidgen of savasana by doing all kinds of physically impossible poses {asanas} for an hour first. i didn’t think i’d need a towel as i do in cycle and circuit, because it’s yoga and in yoga you just sit around looking serene and then have a sleep. shortly into that first class, i was wet, i was red, and i was inelegantly shaking with exertion. {i do power vinyasa for those who know about these things; i found that out later, and it’s no walk in the park}.  before we even got to that eagerly awaited savasana, we did ‘inversions’ which was another aspect of yoga i was quite unprepared for; basically headstands, shoulder stands, anything upside down will do. so by the time you lie down on your mat, you have thoroughly earned it. for the next four days i struggled to walk, to lower myself to the toilet, to shuffle down the flight of stairs which led our flat, as my muscles cried and groaned with over exertion. it was actually agony and i made sure that ben knew all about it. infact, i only just recovered in time to do it again the next week. and it made me exhausted; all i wanted to do was sleep and sleep. 

considering my initial motivation, it’s quite surprising that I continued with the torture. but i found that i loved the challenge, and loved how i felt after I’d put my body through its paces. it was a physically intense work out for every muscle group, and i was learning to control and slow my breathing, a skill i’d been wishing i had since my struggle with panic attacks {a skill my psychiatrists had struggled to teach effectively}. practicing yoga was another piece in the puzzle of me feeling better overall, and an exercise session which i enjoyed, so i was committed to continuing. 

i walk up to the room holding my chai brown yoga mat, smell the whiff of incense and take off my shoes. if the scent were any stronger i would get a headache, and i am amazed i can handle it. i chose this yoga centre over another one which oozing yogic spirituality – i just didn’t want to sit still for half an hour chanting ‘shanti shanti’, and then spend an eternity in silence with movement and scratching forbidden. the instructor sat at the front of the room amid ornate cushions, prim and proper like a goddess with her legs in lotus position, and she looked like the type who would reprimand me for laughter or any other show of joyfulness. it made me think i was in an ashram and that’s one place i will never go. the only physical thing we did in that class was lift our leg up and move it in a few circles, and the whole ordeal was intensely stifling and anxiety provoking.  

my first yoga teacher told us that if we were prone to impatience in everyday life, we would probably find ourselves wanting to let go of our poses as soon as possible. i hold the pose, and inside i’m screaming, “ come on, say we can come out of it now, I’m going to fall over, my leg is burning, this is agony, you’re taking too long...nooo, don’t correct that person over there, it distracts you from realising how long we’ve been holding this position...” finally, long overdue, the teacher says we can come back into a more relaxed position, and I am the first one out of it with a crash and a bang. but I’m learning to breathe through the pain and striving to be in less of a rush. i am incredibly impatient in most areas of life, so i think yoga and long term illness are doing me some good. it helps with my anxiety, with pain management, with flexibility, with strength, with posture, with mood, with fatigue, so yes, i suppose this post is basically just a long winded way of saying ,’ i am so glad that I found yoga.’

i am heartily tempted to go along to this kind of yoga; with my uncontrollable laughter issues, i think i’d love it. watch this video here. do you think its mad or wonderful?

leg warmers i knitted for shavasana, of course