intricacies

 her diamonds, by rob thomas - the notes for these words

 

It has reared its hideous head and I feel that I am a-tangle.  My head plays a soundtrack set to replay all the day long and all the night. Tears stream down my cheeks as midnight strikes and still my exhausted body won’t settle into slumber – its on hyper alert. I need a paper bag to breath, as I hyperventilate. I want to scream loudly. I jump up and down on the stop trying to let out whatever it is that is knocking inside me. My whole body tenses strongly as I sit doing nothing – I give myself the direction to relax my muscles and remain that way for all of a minute. Next time I become aware of it, all muscles are taut again. My bowels have given up proper functioning, and my fingers naturally bee-line for my hair – I pull it out and collect a tragic pile of it, I want to tear it all out in a bid to appease my cravings. Meanwhile my physical strength is paling, a miserable grey as it channels everything towards the beast inside me. 

I feel that I have lost control, that I’m a crazy, messy, miserable apology for a woman. I feel like I’m a knot in a necklace, disarranged, distorted. It’s resembles the mess my whole body is in.

What are you worried about? Someone asks. I shrug my tight shoulders in reply.

If I knew, I’d try my best to let it go, stop worrying. If tears and prayers could let it go, it would be thoroughly buried.

 But I don’t know. What makes me want to rock and cry and pull?

 It’s not logical, not simple. It’s a mystery – to man. One thing I know is that we are intricate, we are fearfully made, and these ways are not incomprehensible to the creator.

“For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made.

My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.”

I’m intricately woven, and understood.

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 If I have one dream for tomorrow, it’s that problems in the mind come to be considered as shame-free as ‘physical’ illnesses like cancer or diabetes. Sufferers aren’t caged in asylums anymore, but mental illness is still an awkward topic. I’d rather talk about my CFS, than my mind problems. It’s so much safer, radically less chance of being labelled ‘mad’ - more chance of sympathy rather than alienation.

Something to share

Being unwell for years on end is not glamorous, not that I really supposed you thought it was. Nevertheless, there are a few perks to this lifestyle (thank-goodness) – namely, peaceful hours in which to read novels, explore blogs, listen to music, trawl the internet for clothes, knit, watch YouTube videos and generally engage in day-enhancing activities. I’ll share 5  ‘something’s’ from my finds with you. 

1.       Something to watch

Below is the link to a video about now 21 year-old conjoined twins Brittany and Abigail Hensel. They share the same body but have two heads. It’s a fascinating watch, and I am amazed at their positivity in what seems like a very very complicated life. Suddenly I was amazed at how blessed I am to have my very own normally formed body, my own space.

Conjoined Twins - Brittany and Abigail

2.       Something to read (for fashion lovers)

There are lovely garments hanging in my wardrope, longing to be donned and exposed to the streets, theatres, cafes, and gatherings; the doctor’s surgery, the psychiatrist, and the physiotherapist just aren’t fitting destinations for some of them. I might come across a little OTT for a ‘sickling’. I often peer in at the rack and wish I had some place to wear my favourites, but they would be crumpled by hours on the couch, so I pick off the floor my fleecy trackpants and pair them with an opp-shop jumper. My love affair with fashion and it’s messages and stories has not been dampened by my pyjama-and-other-sloppy-items existence. Not in the slightest. This book by Kelly Doust just sums it up perfectly, it’s quite devourable and humourous.

Source

3.       Something to share in

I have a pregnant woman fascination. Something about the mystery of these beautiful pregnant creatures captivates me, entices me.  This year I’ve taken to reading personal birth stories, which almost move me to tears they can be so beautiful. The non-text book exploration of the process of bringing a human into the world is special. Even Ben loved the one I’m sharing here.

 A Cup of Jo - Our birth story

4.       Something to listen to

Wistful, reflective and emotive, Faure’s Pavane is beauty, and rather appropriate for listening to when you’re sitting down for 7 minutes peace.

Click here

5.       Something to remember

Shared with me by a friend, I fell for this quote and it’s timeless truth. I am always happiest when I’m not thinking about other people’s good health, finances, and careers.

the night-side of life

The world of illness is a different world. It is the night-side of life, a more onerous citizenship...Sooner or later each one of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Susan Sontag

I read that quote in a book, and I agreed for the most part. I knew that this woman had felt that encompassing feeling of illness, which seems to leave you sitting on a park bench by yourself. Sometimes walking down the street I look at the people who pass by me, and I feel that I am different. A naive thought, considering that I have no idea of their health or suffering – but there is something about losing your physical strength which makes you feel different from human beings who have it. Being sick changes everything, or so it feels to me.

I think about my peers. Who voluntarily wake up the morning after with a hang over. I feel angry that they who have health would choose to intoxicate themselves for their own pleasure, and spend time recovering in bed, feeling ill - what a waste, I think, and I wish I could swap with them. “Here, you take my wretched body and abuse it if you wish, but yours is in good condition and I could use it much better than you.” I would do nearly anything to feel well. I wake up, feeling that I’ve been thoroughly inebriated, after an early night, and a conservative cup of peppermint tea. And if I have a piece of cake and stay up till 10pm, the pain is even worse.

Being sick has changed most things, most of the big things. What I do, what I think, who I relate to, what my dreams are.

Often I focus on the limitations of being unwell. I can’t go to university, I can’t go out at night, I can’t keep our house as clean as I’d like, I can’t help other people much, I can’t eat whatever I like, I can’t work, I can’t go out often, I can’t be superwoman, I can’t have a career, I can’t have a baby......

And all those ‘can’ts’ escalate into one big fat, “I can’t bare this life anymore.” Which is quite a depressed thing to say, really.

I do agree with that quote by Susan, that the world of illness is a different world. It’s a different world to the one I used to live in, but a lot of the most beautiful parts of the old world are in the new.

 Looking back over my life, the special times have not been when I was achieving something great, it’s been when I was feeling something great. I thought getting my AmusA would would be fufilling, but by the next day it was common, unsatisfying. I thought the success of doing well in my finals at school would feel great, but it was over so fast – the thrill lasts about 30 minutes. Getting into this school, that university, that final....Those physical/mental accomplishments just haven’t compared to the times I’ve felt alive, and enjoyed the sensations and emotions that come with humanity. I may not be able to enjoy getting good grades at uni, getting a job as a flautist, entertaining dinner guests or earning money, but I am alive and I can fully appreciate laughter, empathy, relief, satisfaction, creativity, inspiration, love, relationships.

The best times have been suffocating with laughter, squealing with excitement, feeling overwhelmed with love, crying with joy, playing music with emotion, feeling the coldness on my face on a winter’s day, smelling fresh bread, snuggling under the doona, kissing for the first time, embracing a friend, reading an exhilarating book. The simple things, the unforgettable precious things which can’t be put on a resume or hung on the wall.

I’m not deprived of being a human being. And while each day has become more onerous, and more painful, I’ve started to enjoy the simplicity of life instead of racing around doing ‘big’ things.

silence

photo source

Winter has arrived. I love the cold sharp air, the wet piles of autumn leaves, and the dark cosy evenings cuddled up with Ben and our book. I remember last winter so clearly – from the beginning of the cold days to very end, my immune system fought hard and lost in the battle against viruses. I went from virus to virus with barely a week of ‘normality’ in between; at one stage I even had bronchitis. Instead of just feeling awful from CFS/POTS, I had on top of that the weakness that comes from a body putting all its reserves into fighting evil lurgys, and spent a lot of time in bed. A normal cold in my weak and sickly body plays out as a full blown flu. I feel like crying as I write this – since the chilly days arrived a month ago, I have been sick with a virus and I fear that I will spend another winter in the darkness of ‘double-illness’. My doctor says there’s nothing I can do, and my blood tests show my typical swollen liver as it battles away. I have to wait, and stand aside as it flails around desperately trying to kill off the intruders. There’s a helpless feeling as I think about the coming months, and my weak immune system. Another winter in the home as I sleep, play my flute, knit, write, and generally try to keep my spirits up in the wilderness of feeling unwell. I know that if I take it one day at a time I will make it, sometimes half days is the only way to get through.

Do not worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of its own.

Sometimes I just cry. The thing I love about Ben is that he never asks me why. He knows. He knows that life is hard, and that words can never do justice to the feelings which dwell deep down. Each tear encapsulates a thought – fear, frustration, hope, longing, sadness, wonder, confusion, pain, and dreams put aside. The silence and the tears say more than I could ever offer in a book of my thoughts. He doesn’t even try to cheer me up, say something to ‘help’ or tell me to keep my chin up. There is a point where words are useless, and his arms and silence are the greatest comfort.

I wonder as I’m going to see a friend what I can say to help. And then I remember that just being there, and being an ear is all that is needed at times. Why do I think that I need to have something profound to say, when I know so well that human presence means the most? When I know that trickling tears are not solvable with floods of words?

my washing line

This is my quotes washing line – a mixture of things which make me and Ben smile, and things which we want to keep at the forefront of our minds. I go through a major quote fad, then suddenly find a new one which blows my mind, and promptly discard the old. That’s what I like about the washing line, I can peg up the latest thing which inspires me and take down the others.

I’ve always been the sort who feels exceptionally happy one day, followed by dark gloom the next – my diary is testament to a life of highs and lows. I don’t feel emotions by halves, they engulf me. I literally jump up and down when exciting things happen, and cry for hours by the tissue box in despair. I think this is one of the reasons I love quotes... memorable sentences which remind me of the important things, or remind me to stop taking my little life so seriously! 

lastest favourite quote

a true word

reading is a beautiful thing, make time for it

today

picture source

Today I feel so joyful I could burst. This week I was blessed with three delicious days of good health and after a couple of months of mostly tough days, and it feels like golden sun descending on a gray city. On those days where I’m not in pain, I find myself smiling most of the time. I can’t believe that for the first 17 years of my life I took all those pain-free days without so much as a smile. I just assumed that I would wake up feeling fine, and go strong all day. I rarely felt grateful that I was alive and well. I didn’t stop as I walked to the kitchen, with a huge smile on my face, feeling the joy of a body which works. I didn’t relish the sensation of walking and running and standing and talking, without a struggle. I felt my health was a right, a given, an always – definitely not an extraordinary gift.  I was frustrated if I had a cold or a stomach bug, but afterwards I forgot the temporary interruption to my health and carried on, as ungrateful as ever.

If I had never become so sick, I would not be this joyful today as I experience and appreciate health, the beauty of being alive! The simplest thing makes me feel happy – going to the supermarket on a well day without having to wear sunglasses to shield my sensitive eyes from the lights, and walking around like a ‘normal’ person, putting things in my trolley. I feel excited as I do these things, unhindered by the illness which usually holds me captive. I feel so normal, and yet I suppose most other people in the supermarket aren’t rejoicing in their ability to get the groceries. It’s the little things, the things which I never appreciated, which I now treasure.

Tomorrow is an unknown – I might have another beautiful day, or I might be mainly couch bound. So I'm going to enjoy today’s moments, today’s sunshine.

Thankyou!