The Joyce Girl by Annabel Abbs

a book review

 

image of The Joyce Girl by Annabel Abbs book cover

 

When I was seventeen, there was a Guggenheim exhibition at the Art Gallery of New South Wales. I went there with my art class, and returned, time and again. It was a window into the world of my art text books. Here they were. I stood as close as I could to Brancusi’s, Calder’s, Dali’s, Moore’s and Mondrian’s. I breathed the air next to them like I might catch some ions of genius leaking from the very spirit of each work. I stood back and squinted at them, turned my head and observed them in their minutae. It seemed to me, a spotty gangly teenager in a distant antipodean gallery, that these foreign artists were the master race; their works a gift from the greatest muse of creative expression. The soul of life itself.

The Joyce Girl is Annabel Abbs’ inspired story of an Irish girl in the 1930’s. She lives in Paris, right in the midst of the bohemian art world of my Guggenheim heroes. A dancer, dreamer and artist, Lucia lives in a straightjacket world of obligation and overwhelm. She is the daughter of James Joyce, celebrated writer.  She is known historically as integral to the production of Joyce’s lengthy work, Finnegan’s Wake. She is caught in the undertow of her father’s work, sublimated by her roles as dependent daughter and co-dependent muse. Her own genius, obscured first by the narcissism of her father, despised by her mother and brother and later destroyed by the inept machinations of mental asylums, is explored first hand. She is finally given voice by the author Annabel Abbs in this novel. Heavily based in the facts of Lucia Joyce’s life, we see first hand the struggles of a troubled girl trying to make sense of herself.

“An ephemeral arch of colour, swaying and dissolving. Flashes of imprisoned light. Trembling loops of movement. A wind washed rainbow, my bands of colour shivering and melting. I crouched and twisted. Needles of rain, spiked and hard. I stretched and spread my fingers, soft rays of warm sunlight. I was a swathe of luminous colour. I was the gold-skinned weaver of the wind. Sun-spangled sovereign of the cosmos”  -Annabel Abbs ‘The Joyce Girl’

I loved many things about this book. But, oh, Abbs’ descriptive passages of dancing! She is expert in describing this artform with a keen sense of the visceral experience of dance. I realised that my legs and feet were flexing and moving as I read, and I do love a book that transcends the brain barrier.  I enjoyed Abbs’ turn of phrase; sometimes, I felt she was touched by a Joyce-ian way with words which added depth and relevance to the experience of reading this book. It was immersive.

I so loved the characterisations of some of the artists I had studied as a teenager. That world of Bohemian Paris, where artists came for freedom and connection, was painted with a vivid hand. I felt like I had stepped inside my Guggenheim exhibition. That I could walk alongside Alexander Calder and listen to him expound on shape, form and movement. It was transporting.  And when the time came to explore the deeper psyche of Lucia, Abb’s sensitive writing captured the child Lucia with care. It was emotionally difficult to read, but a necessary and bittersweet journey with Lucia through the dark travails of her mind.

Most of all, I loved that Abbs gave Lucia’s story an audience. I doubt that before reading this novel, I would have read Carol Loeb Schloss’ biography of Lucia Joyce’s life, To Dance in the Wake. But now, I will. Lucia is a woman of history, of art, of feminism, whose story should be told. Abbs’ story of Lucia; childhood trauma, repressed memory, subjugation, dysfunctional family relationships, unrequited love, unfulfilled ambition and incarceration… I am certain is an echo of the many women whose independence and freedom were stolen during times when mental institutions were dangerous places and Psychology a fledgling discipline.

My own Great Grandmother was institutionalised when her children were very small. Now we assume she had undiagnosed postnatal depression. But I wonder who she really was, and now there is no way of knowing. These stories should be told. These voices should be heard.

I recommend The Joyce Girl. Thank you Annabel Abbs for writing this important novel.  I will take it with me on my own metaphorical dance of independence and freedom.

 

Source: https://upload.wikimedia.org/wikipedia/commons/0/07/Lucia_Joyce_dancing_at_Bullier_Ball_-_Paris%2C_May_1929.jpg
Source: https://upload.wikimedia.org/wikipedia/commons/0/07/Lucia_Joyce_dancing_at_Bullier_Ball_-_Paris%2C_May_1929.jpg

 

Complex Regional Pain Syndrome (CRPS)

I haven’t talked much on this blog about pain.  In fact, for a long time, I preferred to ignore the topic.

Where does it hurt_(1)

Many of my friends in the invisible illness community have concurrent diagnoses of Complex Regional Pain Syndrome, and within my own family, my sister has been dealing with chronic pain for most of her adult life. It is a debilitating and exhausting challenge for the body and mind.

I previously had neuropathic pain with my Dysautonomia. Peripheral and abdominal mostly. And then I sustained nerve damage during a gynae surgery three years ago. However, the distractions of my primary diagnosis meant that it wasn’t immediately clear the surgery was the cause of my pain. I’d had a steroid injection to the site after the surgery, then gradually over time, my pelvic pain returned and increased. It affected my gait and had a dramatic impact on my mobility. Walking with a cane possibly exacerbated it, but without it I would have been unable to walk further than ten metres. It hurt so much. The pain extended from the left inner pelvis, down the middle of my left leg into my ankle. I found osteopathy helpful. I took pain medications (gabapentin and oxynorm) and modified my life. I thought that it was just another curve ball thrown at me by my dysfunctional body. I didn’t connect it with the gynae surgery. Or at least, not until after the six months of methylprednisolone infusions; when my pain disappeared completely.  That’s when the lightbulb went on for me.

When an awful symptom is removed and you experience life, pain-free, it makes you acutely aware of how much it was affecting your life.  I realised both how bad that pain had been and how long it had been bringing me low. As I weaned off the steroids, the pain returned.  I had another, more minor, gynae surgery.  This time, the pain post surgery was excruciating. I was certain that some medical misadventure had occurred. The specialist in the hospital explained that they couldn’t find cause for the level of pain I was in. I agreed that a referral to the pain team might be useful.  I was in remission and just had this pelvic issue to sort out.  Eager to get beyond it, I was keen to try anything.

The Gynaecology Pain Team have been so wonderful. I see an anaesthetist, a pelvic phsyiotherapist and a psychologist.  They believe that pain is exacerbated by a number of factors, and first introduced me to the concept of complex regional pain syndrome. This is what my psych wrote in her last clinic letter:

“We concluded that following 32 years of neuropathic pain from [auto-immune neurological disorder -Pandysautonomia] and three years of neuropathic pelvic pain she will, in all probability, have central nervous system sensitisation”.

That just means that my nerve pathways over time have amplified my pain signals. My body is in pain, and the pain I feel is more extreme than might be felt in the same scenario by someone who hasn’t been experiencing chronic pain for a long time. The longer you have pain, the worse it feels.  But don’t worry, things are in hand here; I am managing fine with all of the measures we have put in place. I have another surgery scheduled for August, when hopefully we will have a clear direction for treating the nerve pain. I am hopeful we can reduce it significantly.

I thought there might be others who can relate to this part of my story. If you want to read more about CRPS, look here.  If you are in New Zealand and have been diagnosed with Complex Regional Pain Syndrome too, you could join this facebook page. And for a quick overview of invisible illness (yes, CRPS falls into this category) have a look at this  clever infographic by Victoria from www.burningnights.orgThank you so much for sending me your infographic, Victoria.

 

Source: http://www.burningnightscrps.org
Source: http://www.burningnightscrps.org

 

 

Are You Alright in the Head?

Dealing with Dysautonomia

I’ve been seeing someone.  Actually, I’ve been seeing a few people …about my health.  And this month, because it is Dysautonomia Awareness Month, I’m going to do a series of interviews with various practitioners who help me with my Dysautonomia.

Today’s guest is someone who helps me with the aspects of chronic illness that impact my thinking, my mental wellbeing and my mood.

psych

Today I am interviewing Anna Patience, a Health Psychologist with ProCare Psychological Services in Central Auckland.

Dysautonomia patients typically spend a lot of time at medical appointments, addressing various aspects of their illness with specialists across a wide range of disciplines.  Our Western model of medicine compartmentalises our body into different systems, or medical disciplines.  Because the autonomic nervous system employs organs and functions from a range of these groups, we necessarily see many different doctors. It is hard to get them all communicating with each other about what is ultimately, the whole patient.

When you are so busy seeing doctors, it can be easy to overlook a significant aspect of our wellbeing: our mental health. People suffering with a chronic illness face many psychological difficulties. Recently, my GP told me about a free service available to patients enrolled with a ProCare Primary Health Organisation. I am eligible for six sessions with the lovely Anna Patience.  Yes, that really is her name!  And yes, she is patient by name and by nature. Anna has been steering me through some murky waters, illuminating some new ways of looking at things that I had previously felt were drowning me. Giving me strategies and frameworks to understand the processes my mind was going through.  I am so grateful for the opportunity to work with her.

Anna generously agreed to help me share a bit more with you about what she does and some of her thoughts on the psychology of chronic illness.

Me: What is a ‘Health Psychologist’?

Anna: A health psychologist is someone who has been trained to work with individuals (and couples and families) who are having difficulties or challenges with their physical health. This might be due to a recent diagnosis, managing a chronic condition (eg diabetes) or experiencing unexplained physical symptoms. It is normal when someone is experiencing physical symptoms that they might also experience some changes in mood; how they then cope with this can play an important role in the management of their health as well as their quality of life.

Me: What led you to choose health psychology as a career path?

Anna: This was slightly unexpected, as originally I had wanted to be a French teacher! However during my undergraduate studies I took some psychology papers and took up a part time job at a telephone counselling line for 5 to 18 year olds called ‘What’s Up’. This changed my career plan as I found a huge source of purpose and meaning in this work, and was also inspired by those I worked with. I then went on to do post-graduate in health psychology at a masters level and found the holistic element of working as a health psychologist resonated with me. Its also a job that offers a lot of variety, as people can work on the clinical or research side, or both.

Me: What does an appointment with a health psychologist usually involve?

Anna: The setting where I currently work is a brief therapy service, which means most people have 4-6 sessions available to them. Because of this, the first appointment is often focused on what people are most concerned about at this time in their lives. It explores how their physical health condition/situation might be impacting on their ability to engage in the things that are most meaningful to them, for example their close relationships, their work, leisure activities etc. The therapist and client will work together collaboratively to explore the connections between cognitive (thoughts), emotional, physical and behavioural factors and understanding which of these fall into short-term or long-term coping skills. We would also discuss in the first session what the individuals expectations or hopes are for their sessions.

Following this, in subsequent sessions, time is spent both exploring those coping skills, and adding in other strategies that may be useful to the client. This could involve discussing how best to communicate to loved ones/others about their illness and needs, testing out other ways of approaching activities for example pacing behaviours to manage energy output, or being able to step back and ‘unhook’ from thoughts that are unhelpful. Other tools might focus on helping an individual to allow their difficult feelings about their condition, for example feelings of anger, disappointment, fear, shame or sadness. Ultimately interventions are best used when tailored to each individuals needs.

Me: For some patients, seeing a psychologist is something they are reluctant to do.  People can be afraid of being labelled and the perceived knock on effect for their diagnosis and treatment in a medical context.  Many Dysautonomia patients report being initially mis-diagnosed with anxiety, conversion disorder, somatic illness or hypochondriasis (by medical doctors, not psychologists).
Do other doctors have access to information shared in these appointments?  What is the privacy standard in relation to these sessions?

Anna: Everything that is discussed with a psychologist is confidential, unless someone states they may be at harm to themselves or others. At our service the General Practitioners are sent a brief letter after the first and final sessions, with the consent of the client. Psychologists are bound by their ethical obligations to maintain their clients privacy.

Me: What are the most common issues you discuss with your chronically ill patients?

Anna: This would fall broadly under the heading of ‘coping’. What do people tend to say, feel, or do in response to their bodies symptoms, and how might this then impact on physical and emotional well-being? Pain and fatigue are common physical symptoms so this is often a focus. A large part of working with people who’ve had a diagnosis is dealing with the loss of a pre-morbid level of functioning, and helping them process what this is going to mean for them going forward. Adjusting personal expectations, and communicating to others about this is often discussed.

I tend to work primarily from a model of therapy which falls under what they call “third wave” therapies, called Acceptance and Commitment Therapy (ACT). This will often involve clarifying with clients what they want their life to be about in the face of this illness, what do they want to stand for, while also providing them with ways to not let unhelpful thoughts or difficult uncomfortable emotions prevent them from pursuing these valued activities.

Me: Personally, I have found seeing a health psychologist really empowering.  You have given me tools for addressing the parts of my daily experience that are difficult for me.
If you could offer chronically ill patients one ‘takeaway’ idea to think about, what would that be?

Anna: This is a difficult one! I would say thinking about health in a holistic way would be something to consider. This might mean noticing what your mind says about your body and the changes its making or the things it can’t do anymore, letting those thoughts/feelings happen AND continuing to connect to those things that are meaningful for you. Also, using those supports around you, or asking your GP for a referral to a health psychologist if you feel getting an ‘outsiders perspective’ is worthwhile.

Me: What is the one go-to resource that you would recommend for chronically ill patients:
Anna: This is not a resource that is specific to chronic illness, but the two books I use almost daily with my clients and highly recommend are ACT books. They are The Happiness Trap and The Reality Slap, both by Dr Russ Harris.

Me again: If you are suffering from Dysautonomia or another chronic illness and you have been feeling unsure about seeking psychological help,  I would like to encourage you to give it a go. Seeing Anna has made a big difference to my outlook.  Even though things with my body have been getting worse, thanks to her, things with my mind have been getting better.

I hope this interview has helped you.
Do you have questions?  Ask away!

 

The Script meets the Scientist.

or, How to De-fuse from Unhelpful Thoughts.

I have just typed up a long a grim tale about my crappy day, and then erased it.  It made me depressed reading it, so I thought you could do without it.  You’re welcome.

Instead I will tell you about the stuff my health psychologist helped me with today.  I arrived at her rooms so full up that my inside thoughts were spilling over the top of my metaphorical cup.  My cup runneth over alright, but not with joy.  Anna is an expert tea maker, so she brought me in a real cup, and we began.  I blurted out some stuff that is happening for me. I am grieving the loss of my differential diagnosis hopes.  No channelopathy diagnosis for me. Both my immunologist and endocrinologist don’t think it is an adequate explanation for my symptoms. I had really hoped, you know?  And hope was a kind of freedom.  I was letting myself dream.  My mind took me there and I liked it.  But now there is a big hole where the hopes fell through.

Anna explained that when I am going through stuff, my mind goes into judgement mode.  It’s a very ancient script, one that I’ve been reciting, in variations, all my life.  I can’t control my situation, so I turn on myself and try to control me.   All the judgement of myself that might just make me pull my socks up, turn the other cheek, push through, fix it.  Turns out my mind has some nasty things to say to me.  It plays them on repeat just in case I haven’t been listening.  It’s painful.  Does your mind sometimes sound like this, too?

_You are replacable, dispensable, not(2)

I hate this script. So I fight back. I employ my rational thinking, I answer those statements.  I try to refute them.  I look at them and see if they are reasonable and I argue with myself.  I defend myself.  I get angrier, I fly into protection mode and I scream at my mind to shut up.  I spend my energies resisting those thoughts, all the while getting caught up in the very thoughts I am fighting against.  I am still in their thrall, batting them away from my mind’s eye.  Fighting.  In my fight, I am giving them even more power than they already have. I’m the one giving them more airtime.

They will never ever go away. But today I learned to do something else with them.

I learned to use my scientific, observing mind.  Step back, notice them, name them.  Accept that I have those thoughts and let them exist, not as truth, but just as part of what my mind does to try to fix my problems. My mind isnt always helpful.  Those statements appear as truth, I’ve been hearing them for so long they must be truth?  But. they. are. not. truth. They’re just part of my software.  My glitch. I can ground myself with some exercises in mindfulness.  Be more aware of who I am with, where I am, all of my senses. Breathe, deeply. Tap into the love I feel for my family.  Let myself rest.

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It’s a new day and as usual, I have woken playing the script.  Like a radio station blaring on in the background, playing some stupid daytime drama I hate.  
But I remember what to do. I am relieved.

I see you, unhelpful thoughts.  I see you.  I notice that I am thinking things that aren’t going to help me today. And I begin to observe my mind like a scientist observes the squirmy things in a petrie dish.  Poking at those thoughts objectively, they look kind of foolish.  I’m not going to let them decide my day for me today.  They can sit there and squirm away if they want.

I’m going to listen to some Neil Diamond instead.  Do you have a self judgement script that needs to be slapped onto the petrie dish and categorised for what it really is?  Bad background noise.  It’s not truth.
I hope you enjoy this rendition of Paul McCartney’s ‘Blackbird’, by one of my all time favourite singers, and from his album titled ‘Dreams’.

Words Don’t Come Easy -How to Help Yourself

and
How to Help Others Help You Too.
Source:www.writeawaywithme.com
Image and Words by Michael Leunig

Today’s post has been inspired by some homework from my Health Psychologist, Anna.  She is a pretty savvy lady and I really got a lot out of the chapter she gave me to read.  It is called A Caring Hand and it is from Russ Harris’ book, The Reality Slap. Sometimes there is a gap between reality and what we think it should be.  Sound familiar?

Like the difference between the me I see in our holiday snapshots, and the saucy model I felt like I was!

Or the way you think other people should treat you and the way they do.

If you have a chronic illness, this reality gap is something you deal with every day.  Maybe even in relation to those closest to you.  It’s really hard for people to know what to do, how to be.  It’s really hard for people to sustain their compassion, it can be exhausting.  Even those closest to you sometimes need some respite from approaching things in a sensitive way.

Some of us are on our own for a lot of the day.  That’s just reality. And that is when we can really help ourselves, rather than looking to others to meet our emotional needs.

Before I carry on I want to explain the origins of the word compassion.  It derives from the latin.  Com meaning together and pati meaning suffering.  Suffering together.  But how can that apply when you on your own?  I am discovering that you can be your own best friend.

Bad things happen to everyone. And when they do, we naturally hope for kindness from those around us. When something painful happens to you, like a difficult diagnosis, a death in the family, a marriage break up,  a miscarriage or a catastrophic loss of property… there are so many things that might constitute a reality slap… it is natural to seek comfort. It’s instinctive to seek support. Do you remember the peace that comes with a warm and sensitive response from someone close to you?  Maybe it was one of these responses?

Hello(7)

These responses all communicate how much a person cares about you and your situation.

And then, there are the other responses. The ones that fall through the gap.  They are common responses in society because we have failed as a community to teach each other that they are not useful.  People don’t know. I think it is really important to remember that these responses often come from a place of good intentions, even if they are not sensitive:

Hello(9)

Proverbs and quotes are tricky territory. These may in essence have truth for the human condition, it’s probably why they have become popular.  But they can be invalidating and unhelpful.  They ignore the pain you are experiencing and can feel judgmental.  The hidden message of all of these types of platitudes is “Harden up, look on the bright side, it can’t be all bad”.  When some days, it just is all bad.  Here is what Harris says about that, “If they are the first thing you say to someone who has just been slapped by reality, you will come across as uncaring or offensive… as a general rule, a compassionate response must come before anything else. If someone leaps in with advice, proverbs, positive thinking or action plans without first demonstrating his or her compassion, we are likely to feel upset, annoyed, offended, hurt or irritated -often without quite realising why this is”.

Some of the responses in the second group can actually be really helpful and practical, if they are preceded by caring and empathy.

Mind the gap.  It’s easy to fall into it when someone responds to you from the unhelpful responses.  But we don’t often enough consider how we are responding to ourselves.  Helpfully, or unhelpfully?
Ask yourself:

Who is the one human being who can always be there for you in your life,
in any moment, no matter what happens?
Who understands you better than anyone else on the planet?
Who is the only one who knows how much you are suffering?

You.
Harris suggests that because we are always available to ourselves, we can always do something to help ourselves, even when we think we can’t.  We can be our own first responders. Many of us do, already, practise excellent self-care. Many of us have learned by necessity to nurture ourselves through suffering. But sometimes, our self talk is more like the second list of responses. I know for myself, that I tell myself to harden up all the time, to push through, to stop being pathetic.  I can be more harsh with myself than anyone in my circle and I frequently am.  He suggests that the relationship we have with ourselves should be similar to one we would have with a best friend.  Imagine, if you always had that friend there to be kind to you when you are struggling?

Self compassion is two-fold.
There is being kind to yourself…

Screen Shot 2014-06-18 at 8.00.12 amResting your own hand where you feel the most pain, as a hand of compassion, allowing yourself to relax and accept the warmth of your own kindness.

Screen Shot 2014-06-18 at 8.00.12 amNoticing when your mind is being harsh with you and gently telling yourself what your kind friend would tell you.

Screen Shot 2014-06-18 at 8.00.12 amAllowing yourself the time you need without judging yourself.

Screen Shot 2014-06-18 at 8.00.12 amReminding yourself that you are deserving of compassion and it is okay to give it to yourself.

…and there is being present with your pain.

It might be your illness, your grief, your suffering.  Or all of these things.  Being present with your pain might be something you are horrified at the prospect of. Here, ‘being present’ is used by Harris in the context of mindfulness.  My homework chapter ended at this point, so next visit I will ask for more.  I am keenly interested in how mindfulness might help to diminish my negative feelings about this illness.  Do you think it might help you too?

For now, I am going to lay a warm hand on my own shoulder and say some kind things to myself for getting this post written.  It has been a tough morning, symptom-wise and I have a big afternoon ahead.  If your own hand of compassion is not enough, get online, join a support group.  Don’t give up.

I hope you can begin to be kinder to yourself today.  Mind the gap, don’t fall in.  It’s good to remember you can make a beautiful bridge to stretch over that canyon.

More soon, I’m seeing Anna again tomorrow.  Watch this space.

PS. Here is a song I heard on the radio just as I finished writing this post.  I always notice the songs that play, I’m sure there’s reasons for them.  This one I am singing for me.
Sometimes finding kind words for ourselves isn’t easy.

Words, don’t come easy, to me
How can I find a way, to make you see
I love you,
words don’t come easy.

And here is a link to Russ Harris’ book The Reality Slap

 

 

 

 

Working It Out & 16 Self-help Tips for the Chronically Ill.

 

I’ve been seeing a Health Psychologist lately. Her name is Anna and she is fantastic.  I have six sessions with her, under the provision of my PHO (primary health organisation)*.  She’s been helping me to work some things out.  Specifically, the head-stuff about dealing with a chronic illness.  Society at large is impatient with people who have conditions that won’t go away.  The attention span is often short. As I saw someone put it recently: ‘get better or die’ seems like the unspoken, prevailing mentality of our culture. I don’t know where that started, or how.  But there are so many medical puzzles and strange syndromes, I guess people tire of it.  No one wants to hear you bleat ad-nauseum and their emotional energy for discussing, acknowledging or assisting you in your illness can be used up very quickly.  Couple this cultural morass with my own reluctance to put my vulnerability out there…  well, it’s a big contributor to the mental burden of my illness. I want to feel accepted. But the acceptablity factor of chronic illnesses is up there with… how much the Australian’s like Tony Abbott.

A big part of my feeling of ‘belonging’ in this society has always been my work.  Being a ‘teacher’ files you into an easily understood category.  It’s an instant ice breaker and often leads to lengthy discussions with strangers about how little Johnny can be helped with his times tables. (Er… practise?) That particular nut is one I have failed to crack with my own children, so strangers beware!  Best teaching advice not always found here, despite how readily I give it out!  I have always liked being understood for my work role.  Although, sometimes the perceptions of teachers from the public can be challenging. The statements about our long holidays and lack of real ability, all thanks to that old nugget “those who can do; those who can’t, teach”.  But on the whole, I have found that people respond positively to teachers.  Most people recognise that it is hard work and you wouldn’t be a teacher if you weren’t dedicated to young people.  Most people like that.  And now that I am not teaching, it feels fraudulent to declare that I am, just so that I can arrange myself into a box that people know and like.

You know how it goes:
“What do you do?”

Erm, I have this thing, this condition.  I don’t work anymore.  I blog (does that count)?”
“…oh.”

I really miss the identity that my work gave me.
I miss having an easily identifiable role.  Something with instantly recognisable status and take-me-serious-ability. My moniker.  My way of being.

So I have been working with Anna on re-defining my role and reaching acceptance about the change in my identity.  I am not a teacher anymore.  But I still teach sometimes. I guess I can say I’m a Health Activist; but only in my own small ways. I raise awareness about my condition in New Zealand, so that the small numbers of us here can be better understood.  I am a Freedom Fighter (woop!); every day I fight my way through symptoms and struggles to make a life as free as possible for me and my family.  I am a Giver; if there is something of myself that I can share, I do.  I am a mother, a wife, a sister, an aunty, a daughter, a friend. A Writer.

I think the first step in coming to terms with my redefined self, is truly acknowledging the chronic part of chronic illness.  The word ‘chronic’ originates from the Greek (and before that, the latin): “khronikos” …of time.  A Chronic Illness therefore means an illness that persists over time or is constantly recurring.  A long term illness.  I do spend a lot of time trying to find the cause, so I can find a treatment, so I can go back to who I was.  But maybe, I need to accept that in the mean time, this thing is chronic. It’s not going away with a fanfare or a puff of smoke. There is no escaping the fact that these times are the times I must step through.  I am so grateful for the internet, thanks to it, I am not walking the slow path alone.  There is a sychronicity to the inexorable march I am on.  I am keeping time with my fellow inmates, pacing the yard and measuring the time.  We are all working it out, one ponderous step at a time.

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Sheesh! …if Helena Rubenstein is correct.  My spirit has a flawless complexion.

——————————————————————————————————–

Here are some more tips for dealing
with Chronic Illness

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Learn: find out for yourself, anything you can on your condition so you can make good decisions about your care.

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Manage the symptoms:  follow the recommended treatments given by doctors, including taking all medications at the correct times. Use an alarm system or app to help you remember.
Plan for proper nutrition, engage in a recommended exercise program if you can.

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Observe:  Know what triggers your symptoms, if anything. Learn to pace. You know your limits better than anyone else.  Sometimes, challenge your limits a little. It’s okay to try things to better assess your capabilities as they change.

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Rearrange:  Identify the things in your home that can be re-organised to make daily tasks easier. eg. We have just installed a high bench in the laundry so I don’t have to bend down to do the washing. Changing things can help you maintain more independence.

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Enquire:  Ask away! Ask your doctor, social worker and anyone else involved with your care about the services available to you.  Ask online support groups for advice. These people have often been navigating these waters longer than you.  They will have invaluable ideas to help.

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Talk:  You need to continue to talk to the people in your life who are involved in your care. Don’t give up on expressing your needs.  If they don’t know, how can they help?  Just make sure you also keep up the listening part of the communication equation.  The talking and listening is so important, especially in your primary relationship. Try not to shy away from the hard conversations, persist with them until you find resolution, because in the resolution you’ll find peace and connection again.

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Redefine: what your roles and responsibilities are.  Discuss these with your partner, family, friends.  You might need to sometimes be assertive to help people understand the things you can and can’t do.

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Prioritise:  Decide what really matters to you in any given moment and congratulate yourself for prioritising that.  See if you are spending too much energy on tasks or people who are detrimental to your wellbeing.  It might be time to take some things out of the picture.

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Plan:  set realistic goals for your day and try to adopt a kind of structure. Eating at regular intervals can be hard to manage, but it is really important if you are taking medications.  Plan your food in advance whenever you can so that it will be easy to get to and eat. You might need to ask for help to get your food organised for the day. Avoid spontaneous activities if you don’t have the supports or circumstances in place to make it work for you.

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Reinforce:  how valid and useful you are by finding ways to empower yourself.  Being creative is a wonderful way to remember how unique and special you are. It’s also a great distraction.  Find ways to express your own skills and talents and explore all the ways you are able. This detracts from the focus of all the ways you feel dis-abled.  Think of things you can do and get into doing them.  For me, it’s writing… blogging has been a wonderfully empowering tool.  And I can do it in bed!

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Reframe:   Taking a different perspective from the negative is a powerful tool of choice. Being positive can be as simple as seeing the humorous side of a situation or reaching out to someone else who is suffering with some encouragement or acknowledgement. It can make an enormous difference to your emotional well-being.

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Distract:  If you like to be in control, this one is for you.  Man-handle your mind’s focus on your illness by wrestling it into another thought pattern.  Use some strategies recommended by psychologists. Listen to music, do some art, write; get your brain and fingers busy.

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Relax:  Stress worsens the experience of symptoms and leads to increased tension.  Deep breathing techniques, massage, meditation, yoga, tai chi are some things you could try (depending on your physical ability) to improve your relaxation.

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Laugh:  it’s the best medicine. If nothing in your daily experience is tickling your funny bone, seek out laughter.  Search online for funny videos, comedy channels or TV series.

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Get support:  It’s totally normally to be emotional about being chronically ill.  Of course you are!  There is grief for yourself, but also you may find self-blame, anger, frustration, hopelessness, despair.   Seek help among those dealing with your illness.  If you can, find a support group, online or in person. But also, use the mental health help-lines or seek professional psychological help. Friends, family, fellow-sufferers and health professionals can all help you find ways to let go of the sadnesses and find a pathway through.

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Let it Go:  take steps to accept that the old definition of yourself and your old life, prior to becoming ill is no longer relevant to this time you are walking through. Let yourself redefine and create a new meaning and purpose beyond your illness.  I have found that asking by myself  “What sort of person am I?”  rather than “What do I do?” I have a good starting point for this process.  Letting go is not something you’ll do once.  You’ll let go in stages, or you’ll let go over and over.  Just keep your focus on who you are. And be kind to yourself. This letting go is tricky.
No wonder the world is singing about it.

 

*Are you in New Zealand?  If you are and you are registered with a ProCare GP, you may be eligible for funded sessions with a psychologist (no cost to you).  You can find out more about this service by contacting ProCare Pscyhological Services or your GP.   www.psychologynz.co.nz
Some health insurance policies cover psychiatric services or there is always the option to pay for the services of a qualified psychologist.  Call your insurance provider if you have questions about it.