The Business

I love the Flight of the Conchords.  Whenever I hear the word ‘business’ I want to just sing this song:  “It’s Bidness Time”… tee hee.  Here’s the song, because it makes me laugh so much.  But the business I’m talking about today is a very different kind…

The business of living is the opposite to what I have always thought. We think we know what this life holds for us. We’re that arrogant… or that foolish. We let the past and how things have always been build a logical picture of what will be. As if this life has a formula that makes solid, mathematical sense. Except it never does. Life’s twists and turns are complex, unpredictable and often quite weird. Less maths than chaos.  Less logic than creative. But we persist in thinking we know what’s coming. If only we could use that belligerent belief as a more positive force! But we don’t. We know better.

We map our futures and determine the course of our days as if we’re in charge. Pah! You know how it goes… because this happened, that will happen… because I’m this kind of person, that will never happen… because I’m doomed to failure I will fail… because nothing ever goes right for me… because our family genes are messed up… because good things only happen to other people… because that doctor said I could never… because there is only one possible pathway  (as if there is a sat-nav for the soul!)… because you can’t make a silk purse out of a sow’s ear… because. Just because.

And a thousand other silly statements we make to ourselves. A daily manifesto of negative expectations. Have you thought about being a little less human about it all? I’ve been trying lately to just stop analysing. To stop telling myself how it is going to turn out. To live in this moment instead of the next, or the last. I guess it’s part of the letting go. Humans are so expert at making meaning out of experiences. We test our hypotheses all the time with self fulfilling prophesies. Limiting ourselves based on what we know. But what about all the things that we don’t know we don’t know? The infinite combination of possibilities outside our ken?

A girl I have talked about a lot on this blog is Michelle Roger. I rave about her because she is truly wonderful. When I was lost in my diagnosis, her blog lit the exits out of my spiralling mindset. She’s been battling Dysautonomia for so long, she’s given it a name. He’s the unwelcome Bob, who lives with them. He’s an arse. He gives her jip. You can find her blog here. And even though her case is severe and complex, Michelle keeps doing the things she loves; anyway. She is a gifted writer who recently won a mentorship with Writer’s Victoria. She performed one of her pieces at the Emerging Writer’s Festival last year, and again this year. She’s been published. She carries on, and takes opportunities, even when most bystanders would say “how are you going to manage that?”. Somehow, that’s how. Somehow, anyhow. She’s a woman I admire. She’s a modern day Frida, making her art from the truth and pain of her experience. And she’s funny too, if you like a bit of the quirky/classy/smart, you’ll love her.

When I had a phone call yesterday from Vivien’s Modelling Management, telling me they’d like to sign me, and that 62 Models, here in New Zealand would too, my little brain expanded a bit. What an incredible opportunity! A whoppertunity! It’s so exciting to think that what I am, what I have; all of me, might be useful in a different way to what I thought. It aligns with my values around diversity, and being able to find the work that works for you. It gives me work in short bursts, with opportunities to recover in between. It will bring income back into our home. And one day, it might even be a platform for more awareness. A thought that surprises me. I never imagined this kind of thing. It was outside my experience and beyond my self-belief. I didn’t know that this opportunity could happen for someone like me. It wasn’t in the plan.

So. How will I manage? I don’t know. I just will, somehow! I’ll be picking the brains of my friend Helena, an established model friend who is also a Dysautonomia chick. I’ll take the advice of Claire, who had a classic response when I asked my friends that question yesterday. I am so fortunate to have a group of gals in my Dysautonomia community who have become very important friends to me. We chat online; they know all the ups and the downs of my journey, just as I know theirs. They get it all, and they are resoundingly positive. It fills me with good cheer. Claire said:
“-Silly! You’ll do it the way you do everything else – with a smile, kick ass attitude, and much complaining to us, about how fucking hard it is…” haha. Yep. I think I will. My girls have got my back. How much joy like-minded souls bring to this life. Solidarity and sisterhood. It’s important everywhere you go.

Last year I wrote a piece about my indomitable Granny (Her Stellar Career). It’s a good read if you have been feeling like your dreams are out of reach. She knows a fair bit at the ripe old age of 93. When I told her about this modelling thing, she twinkled and said “Dear, would you introduce me to them so they can sign me too?” 🙂  I think I’ve been learning her lessons. Because instead of sitting back and feeling like this life has passed me by, even though I might be forgiven for doing that, I am taking action. Like Michelle. Like Joyce. Getting busy with The Business of Now.

How are you at living in this moment?
Do you worry a lot about the future?
Do you think you know what it holds?
Let go a bit.  Let go and let life take you somewhere you never expected…

The Dealer

picture of a hand holding a pen, hovering over a form (paperwork) and the words "and what do you do?" overlaid.

“And… what do you do?”  The Financial Planner was filling in the forms. We have been thinking it is time to get serious about our finances for years and now we finally are. The guy had already discussed my husband’s occupation.  Much head nodding and respect. And now it was my turn. The field for my occupation was empty, his pen hovering over the space.  I hesitated, and he filled the awkward pause with a mumble about how being a full time housewife is job in itself. I hadn’t said anything yet. I never use that term to explain what I do. Never have. I’ve always put my profession in the box.  Wife is my marital moniker.  Not my profession.

My profession has just slipped out of my grasp.
Teaching. Being sick, I haven’t been able to do the required number of hours in the classroom to maintain my teacher registration. So now, I can’t even say “I’m a teacher”.  I know I am bleating, but it is one of those owies that still stings.  I have the qualifications, the experience, the boxes of treasured thank you notes from my students, a cupboard in the garage that holds the last vestiges of my classroom souvenirs.  According to our registration board, it is not possible to teach well if you have been out of the classroom for as long as I have.  Except that I never really left it. I’ve been relieving and doing part time roles wherever I can during that time.  It’s just not ‘enough’.  I would need to do spend thousands of dollars I don’t have to re-train; if I want to use that degree of mine ever again. Relief teaching was a flexible and chronic-illness-friendly way, for me to contribute to to our income and to society. I worked when I could. It is such a shame that this is now out of my reach.  I miss it.

I looked at that financial planner and searched my brain for something he could put in his box. I explained that I can’t teach at present, but I do write.  That my income is small, and comes from bits of writing I do for various places and the board from our two home-stay students. I didn’t tell him that I am a full time housewife because I am not. If I were, I might not have needed to brush the crumbs away from the table before he sat down with his folders, papers and questions.

He wrote ‘housewife’.  I imagined he thought ‘…and not a very good one’.

I wondered why that question and his answer made me feel so bristly; why I feel shame about not being able to list my profession. I thought about all the lofty housewifely achievements I don’t manage and felt guilty about the state of my home.  I felt that sinkish feeling you get, watching the well world go about it’s business and wishing you had the words to explain just how much hard work it is, dealing with being sick. Dealing with being sick and all the expectations from self and others. Dealing with being sick and losing your sense of purpose, your profession, your image, your income, the defining characteristics of your well self.

The things that make you feel good about yourself.  It can leave you feeling a bit shit.

What do I do?

I deal.
Put Dealer in that box, Mister.

The Dealer, dealer, deal, deal with, make a deal, deal with it.  Dealer.  The Dealer.

Imagine

I wonder if you could take five minutes to try something.
It’s just a short imagination exercise.

Can you imagine.._(1)

Can you imagine what it might be like, to get a terrible flu?  And how it would be if that terrible flu never, ever went away? After one week, the patience of your partner wears thin.  After all, there are kids to look after and he is working, he’s not a naturally great nurse, guys are like that… you’re sure your girlfriends will have stories to share about their men, too, when you’re better.  You’ve a job to get back to yourself, you can’t keep on waking up, saying you can’t and shutting your eyes against the day.

Then imagine that being sick carried on for a whole year.

Fifty two of those flu weeks, end on end on end. The family needs you, so even though you still feel like you felt for that first week in bed, you get up and carry on. Every time you move the dizziness sweeps over your world as your body struggles to find some equilibrium.  You are bone weary. You adapt your usual tasks so you can do them.  Sometimes you crawl. You lean against any surface you can.  You avoid bending, or standing quickly, because that might make you faint.  It beggars belief how many household tasks require bending.

You take on less hours at work, but quite frankly, your boss has had enough. You, who have always been a perfectionist, have become an unreliable employee, your sick days are mounting. You talk to them about what is going on, but the doctors haven’t been able to give you any answers.  Your boss, your colleagues, your friends and even your partner start to look at you as if you might be making it all up.  Surely if something was really wrong they’d know what was up with you?  Maybe you are not trying to get better?  Maybe you are psychologically broken, somehow? I mean, it must all be in your head, you look perfectly normal. You doubt yourself. You quit your job.  Your relationship is under pressure. The kids are acting out because you are struggling to do your parenting job too. The years stretch out. One, two, three.

You’ve been in and out of hospital more times than you can count.  It is now clear you are not manufacturing the things that are going wrong with your body.  They put in a pacemaker to make sure your heart keeps beating. But there is an endless litany of other things wrong, too.  You are afraid of dying, because sometimes, it feels like you are. There are moments in the emergency department when everyone is buzzing around you and there is nothing you can do but shrink your self into a tiny observational dot on the wall. It is too scary. Your partner doesn’t even come with you to the emergency department anymore, it’s better for the kids. You taxi in to emergency, always with a bag.  You know you will be admitted.  You don’t know for how long. In your many visits to the hospital a picture is slowly beginning to emerge. You start to research the things that are happening to your body.  Something keeps coming up on Google.  The Autonomic Nervous System.  You ask about it next time you are in.  Chins are scratched, thoughtful silences. Referrals.  Specialists.  A diagnosis.

You’ve been sick now for four years.  208 of those flu weeks, end on end.

Can you imagine what it might feel like to get a diagnosis?  You are relieved, so thankful to have a way to explain what is wrong with you.  Even to yourself.  There is a thing that you have!  Now that they know, they’ll be able to fix it, right?

And can you just imagine your distress when you discover that the diagnosis isn’t the end of the struggle… just the beginning?  You’ve been lurching through a long distance marathon with the flu, you are exhausted, always waiting for the reprieve, the finish line, the bit where you get to stop and recover. They tell you that what you have is rare and it will be hard to find someone here who understands it, let alone who has ideas for treatment.  You research more.  You join online forums, patient groups, you read everything you can. You print out and highlight medical journals and read them, searching terms on the internet, desperate to find a way out of the maze.  You put forward medication suggestions, based on your research.  Every single treatment you are on that is working has been suggested by you. Even in hospital, you have to educate the registrars who come to see you.  It makes you feel vulnerable. What if you are missing something important?  You don’t have a medical degree, you are nervous when you know more than they do about it. You email research to your doctors. The nice ones might look at it, the others might ignore it. Much like what they’ll do with you.

Then you find a group, online.  They all have what you have. There is sharing, and laughter and illness related humour (yes, it exists!).  There is compassion and kindness and expertise.  Resources and empathy and support. You are not alone. The relief is enormous. You’ve been fighting for help for six years now. You feel a different kind of worse every day. Once upon a time you used to dance. Sometimes you struggle to walk down the street and back again with your cane. Your life is light years away from the way you were before.  You don’t know if you will ever get back to the fork in the road where everything went wrong, so you can step back onto the trajectory you were destined for. If you are honest, you fear you won’t.

You’ve been sick now for six years. 312 of those flu weeks, end on end.

There are worse things, it’s true.  Some people like to remind people like you, that you’re lucky you don’t have cancer. You’re not sure how comparing illnesses is helpful.  It doesn’t change your suffering. Your cardiologist once talked about how people with your heart problems are ‘functionally disabled’ and literature from the States talks about you having the quality of life of someone with congestive heart failure.  But that’s not helpful either. Your reality is you don’t have YOUR quality of life, the one you relied on, based your decisions on, built your plans on.  I’m sure you’re grateful you’ve got your marbles. Glad that you can still walk short distances.  Thankful that you can hug your family. Maybe you’d just like to enjoy those things without feeling like crap.  Maybe you miss the connection between wanting to do something and being able to, just because you can.

What if all the things about your identity, the things you knew to be true, aspects of your personality, the things you do, the way you get around, your career, your parenting, your partnering.  What if all of those things were compromised, because you got something like the flu and it never, ever went away?

Thank you for sharing my journey, for 5 out of the three million, one hundred and fifty three thousand and six hundred minutes I have been sick. If you can imagine how this is, please be kind to the people you know with chronic illness.  It is a hard, hard road and we need your kindness.

Can you imagine?

 

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.

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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.