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.

Best I Can

How do you navigate a healthy marriage when one of you is long-term sick?

I am so fortunate to have a man whose commitment to our marriage equals my own. But that isn’t just a lucky thing, there are never any guarantees that relationships will produce equal commitment. When we found each other, we were careful.  We talked explicitly about this issue.  For us, our previous marriages to others provided the common ground we needed for common understandings. We credit our equal commitment to having first hand understandings of the opposite.  We both had more commitment than our previous spouses.  Both of our marriages ended because the other half didn’t feel the same way about commitment.

So when we met, our shared language was all about what commitment really meant. To us. Did we share the same ideas as each other?  We knew we couldn’t proceed any other way.  And we found we did. But it was touch and go as to whether we would even get married.  It had seemed to us that marriage is nothing to do with the paperwork.  Broken hearts and other people’s choices had shown us just how easily you can dissolve that legal agreement.  For us, marriage was not to do with the paper at all.  Our marriage began when we moved in together.  It was sealed when our baby girl was born, and ratified when our son arrived.   So when sickness moved in, we were already pulling together; equally yoked to the beautiful burden of being a family.

My hubster is an honest fella.  He told me once that if he had known what was ahead of us, he wouldn’t have embarked on the relationship. In truth, if I had known I wouldn’t have wanted him to, either. Who would ever choose it? Who would ever want it for their partner?  For themselves?  Neither of us.  But now, he often reassures me that he’s staying. He chooses to stay committed to me, to our family. He says, in his quiet way, “I’m not going anywhere”.  And I know that he means it.  And I have agonised about whether or not I should leave him. Set him free and let him have a different life. He tells me he would be miserable without me and I know that it is mutual.  We’re a set now. I can’t pull my weight physically, financially and sometimes not even emotionally. But when it comes to commitment, we are equal. And that is the forward momentum our marriage needs.

A few years ago when we were beginning to struggle with my lessening ability to do things around the place, we had an argument. It was a big blow up.  A big release. And I realised that we needed to make another commitment to each other, so that we would know at all times we could rely on each other. We promised that we would always do our best. That is a different thing for both of us, but equal effort.  If there was something I could do, I would do it. If there was anything that was within my scope of ability, I would do it. And I have. He has too. It’s actually a brilliant rule for life.  I think, before we made that promise, he was afraid that I would sink into a chronic illness malaise and do less and less and less.  Not from lack of ability, but from lack of will.

what do you see inside my heart_i’m good

And so that is how we navigate marriage with one of us sick. We both commit equally to the marriage and we both commit equally to doing everything we can, our best, to make it work.

How do you manage your relationship in the context of your illness?
I’d love to hear your thoughts.
Have a listen to this stunning song by Priscilla Ahn.  Oh, that voice!

Belinda Taylor: Would you Rather…?

This ‘Meet My Peeps’ post comes from one of my favourite writers, Belinda Taylor.  A former ICU Nurse, and general Science boffin, mother of Milly the Cat and Monty the budgie, and wife of Chris; Belinda has completed a Diploma of Accounting in the time since her diagnoses.  She has post viral POTS complicated by Myalgic Encephalitis. I don’t think she’s been formerly diagnosed with a wicked sense of humour, but she’s got one.   You may recognise her style from the excellent spoof report she wrote for this blog recently, ‘Breaking News’ all about a cure for chronic illnesses.   And if you are working on one of those 8 Great Ways to Live Well, and need something funny in your day, look no further than Bel’s two pieces.  She makes me smile this girl!

Photo of Belinda Taylor and the quote: "Having a chronic illness of any sort is like a life changing game of 'Would you Rather?'"

Some friends and I used to play a game called “Would You Rather?” at work. Being nurses, it was always pretty easy to find something appalling and stomach-churning to test where your limits of tolerance were. Poo in the eye was always a favourite.
“Would you rather… poo in the eye? Or, to eat a teaspoon of sputum?” See? We were pretty gross.

Having a chronic illness of any sort is like a life changing game of Would You Rather? Would you rather, have your mind deteriorate and a healthy body? Or, have a functioning mind and have your body crap out on you? I’m not sure the first option would be a whole lot of fun, unless your deteriorating mind made you hallucinate all day that you were being fed chocolate macarons by Jamie Fraser from Outlander, while lying in a bubble bath.

Having POTS and ME, I can 100% say that the second option isn’t a bundle of laughs either. I would much prefer poo in the eye. Having your mind say “Yes!” while your body says “Hell, NO!” is a lesson in frustration that is played out in the interaction of your body and mind every day. If my mind and body were once friends, they would have broken up by now and only spoken on birthdays and the occasional ‘like’ on Facebook.

A typical day might go something like this:

Scene: Our heroine is lying in bed in the morning, having just woken up.

MIND: Ugh, I really need to go to the loo!*

BODY: Ha! You know I’m going to make you face plant if you try and get up before you’re well hydrated and have taken your meds

MIND: -but if I drink more, I’ll need to go to the toilet even more!

BODY: Well, ok, if you want to risk it…..

MIND: Fine, you win. I’ll drink this bottle but I’m not waiting for the meds to kick in.

BODY: OK, I can live with that.

erm, what would I know_!(2)

Our heroine commences a wobbly walk down the hall to the bathroom for sweet, sweet, bladder relief.

MIND: I suppose now we’re up, you want to be fed?

BODY: Well, I’m not too fussed. I’d be willing to let you do something else first. Feed the cat maybe, put some washing on.

MIND: Wow, ok, thanks. I’ll get onto that then.

1 minute and 43 seconds later…..

BODY: FEED ME NOW!!!!  Stop what you’re doing immediately and feed me! I’m nauseous, I’m dizzy, I must be fed right now or I really think I might die!

MIND: But you just said-

BODY: –I know, but now I really have decided that feeding me would be the best thing.
I’m getting hanGRY**!

MIND: Well, ok, if you’re going to be like that about it, here, have some breakfast.

BODY: Ahhh, thank you. I love you.
Thank you for feeding me and looking after me with this delicious food. You really are the best.

MIND: You’re welcome-

BODY: -Gah!! What is this?? Now I have food in my belly, I have to do work to digest it?? Seriously? Well you know what this means, don’t you? I’m going to have to steal all the blood and give it to the stomach. Sorry brain, you miss out this time. And heart? Yeah, you’re going to have to work really hard to get the pitiful amount of blood I’ve left you up to the brain. Sorry about that, but I really have my work cut out for me here with all this digesting.

1 hour later

MIND: Do you think it would be ok if we moved now? Maybe we could try a bit of exercise?

BODY: Oooh, exercise, yes that sounds like fun. What shall we do?

MIND: Maybe we could just walk down to the corner and back again.

BODY: Yeah! Let’s go. This sounds amazing. Woo Hoo! Exercise here I come.

Our heroine makes it to the first corner down the street.

BODY: I’m feeling awesome. Can we go further? I’m loving this! I feel so freeeeeee. Let’s go to the next corner. The next corner really would make my life complete, you know.

MIND: Are you sure? You always say you’re quite tired after exercise. I don’t want you to overdo things. I’m trying to look after you. But the next corner would be pretty amazing…

BODY: Yes! Let’s do it. This is… easy.

Our heroine walks to the next corner.

BODY: Um, yeah, sorry about this, but I don’t feel so good. I think the next corner might have been a bad idea.

MIND: But, you said you felt great, you were keen to go.

BODY: What would I know?!

MIND: Well, quite.

Our heroine inches her way back home, to spend the next few hours (days/weeks) cursing her stupid body for being a bit of a tool***.

What would you rather, poo in the eye? Or chronic illness?

 

NB:  Translations below for non-Australians/New Zealanders…
* loo = toilet
** hangry = hungry +angry
*** being a bit of a tool = being a bit of a dick

 

 

8 Great Things you can do to Live Well with Chronic Illness.

I sat yesterday morning in the infusion centre beside a beautiful woman called Christine.

We always try to sit together when our dates coincide in the infusion room at Auckland City Hospital. She goes more regularly than I do, for her regular vials of IV Immunoglobulin.  Every fourth Monday since we first met, we’ve been sitting together while her IVIG boosts her fight against Myasthenia Gravis, and my Pulse Methylprednisolone suppresses the cause of my Pandysautonomia. She’s great company.

I am always impressed with Christine.  In the face of some truly difficult and devastating challenges, she always looks beautiful and is beautiful.  Carefully groomed, well dressed with such a warm and  lovely nature.  She always has a bag full of occupations to keep her busy.  Yet, she makes time to chat, to ask how things are.  She remembers my kid’s names and cares about what they’re up to. She works part time as an English tutor and is studying the Maori language in her spare time. She is a devoted mother and grandmother, wife, neighbour, online patient forum member, and friend to many. I honestly can’t comprehend how she manages all of those things, every day, and a severe chronic illness as well. But her example makes me want to be better at living with chronic illness. She has made me think more about all the things that we can try to do, to distract, manage, cope with and transcend chronic illnesses.  She is one of the people I look to for guidance, carefully watching how they do it. There are some incredible people out there to learn from, I bet you know some too.  You probably see one of my sources every time you look in the mirror!

B(4)

Here are the 8 of most effective ways of overcoming I have observed in the world of chronic illness.
Some strategies:

Get Right-Brainy

Knit, crochet, write, listen to music, paint, sew, create, play an instrument, make, or do whatever it is you can do within your ability. Remember the complete satisfaction of creativity? It’s transformative, distracting, wonderful.  Listen to creative people talking about their creativity. Invite creative people over to teach you techniques. Watch YouTube tutorials. Do some online courses. Search for ideas. If you can, attend cultural events, musical recitals, the ballet, a musical, a movie festival, poetry reading, gallery or museum.  If you can’t, visit them online.

 

Source: http://meetmeatmikes.com/craft-saves-the-day/
Used with the generous permission of Pip Lincolne: http://meetmeatmikes.com/craft-saves-the-day/

Get Involved

Participate in the initiatives and events being organised by your patient groups on facebook and elsewhere.  Get to know others. There is so much soul-food in the solidarity of people who have travelled the same paths as you. Engage with them. Help fundraise for research. Get the word out in whatever ways are available to you. Post, and comment in patient forums. Ask questions, help out with the knowledge you have gained on your journey already. Finding your tribe is so good for you.  So affirming.  And there are always avenues to be proactive about the circumstances chronic illness has given you. Being an involved member of society is a wonderful way to begin to overcome.

Get Ready

I have spent days that became weeks that became years, living in old jeans, t-shirts and sweat tops, or staying my PJs. It made me feel even more grey and unattractive.  If you can manage it, find a position that works for you near a mirror and put on some makeup. Brush your hair and find something nice to wear, even if it is simply a favourite scarf. Sometimes, getting ready for the day, even if it is likely to be the same as yesterday, makes you feel a little brighter.  I don’t understand the psychology of that, but it just somehow seems to work. When my Mum was battling ovarian cancer, she spent some time with the good people of the ‘Look Good, Feel Better’ Foundation. She came back armed with bags of goodies, a stunning make up look they had helped her to create and new ways of styling her headwear. She walked taller, smiled more and reported more energy when her lippy was on. It’s a kind of magic for the self esteem, somehow.  A lesson I need to remember more often.

It changes how you see yourself, which

Get Outdoors or Bring it In

Even if getting out takes enormous scheduling, incredible effort and results in days of payback, try to get out when you can. Try to make it into the outdoors to look at the beauty of that sky, to breathe in that fresh air and feel a breeze on your cheek.   Even rain feels incredible when you have been stuck inside for too long. I have never felt so amazing as when I floated in the warm sea on my back, blue sky above and white sand below. It’s so therapeutic. We are born for nature.  If you are bed-bound, see if someone can bring you something beautiful from outside from time to time. My kids have always been so lovely with this. A cicada shell, a posy of autumn flowers, a droopy dandelion seed head with all the wishes, wished.  Treasures from outside to hold and to take your mind out there. Maybe you miss seeing all that beauty for yourself and it’s impossible.  Take a look at my photo series from Be Couper: How to Just Be.  She has generously shared some of her stunning photography for my readers to lose themselves in, when nature needs to come to you.

Be Couper Yellow Skies

Transport Yourself

Reading, listening to audio books and watching television series or movies will take you places!  Overcome your reality with a healthy dose of fiction. It’s brilliant to vicariously live the experiences you can’t easily have. Audio books are particularly helpful because you don’t have to lift the book or strain your eyes.  Libraries usually have a good stock that you can order. Sometimes even online!  The Book Depository has free worldwide shipping and a staggering range of titles if you prefer to buy. When I really want to get outside of myself, I call a close friend or family member overseas and indulge in a long chat. Imagining the things they tell me about, where they are, how it looks, how it feels. It’s armchair travel with the joy of connection. Bliss.

It changes how you see yourself, which(1)

Laugh

…because laughing raises your endorphins and happy hormones can’t help but leave you, happy!  Watch the comedy channel. Listen to children talking amongst themselves or playing games. Be silly.  Pull faces and do funny accents. We have a dress-up box and nothing makes the kids giggle so much as coming home to find mummy in an odd wig. Wear crazy things, if that is your thing. Listen to podcasts from clever comedy writers. Read funny blogs. Let your children choose your clothes for a day. Google jokes on subjects that you find funny.  Tell them to people. Recall funny memories and tell them to the kids. Friends.  The nurse.  And when you laugh, make it big!  Breathe deeper, laugh louder, linger longer on the funny bit. It’s good for you.

Find ways to tell people how much you(1)

Give

Chronic Illness teaches us so much.  We often would rather skip the lesson, thanks. But we get it. And consequently, we ‘get’ a lot about life; about what is important. About how to truly love. About patience, compromise, honesty and communication. Be generous with that hard-fought wisdom. Be a good listener. Do you have a talent or skill that you can offer?  A wonderful person I know is severely debilitated by her illness. She volunteered to cut up blankets for the SPCA.  Because she could do that.
Do the household tasks around you that are achievable. Fold those clothes.  Chop the veggies in your bedroom or set-up on the kitchen floor.  Whatever works for you. Maybe there is something else you can think of that you could do for someone? Find ways to tell people how much you appreciate them.  Because being generous is one of the ways that human beings become happy.  If you can’t give of your energy; you can give of your heart.

Find ways to tell people how much you

Find Your Thing

All of these strategies are things I have observed in people I admire with chronic illness.  Some of them work for me too. But for me, the greatest of all is writing. It is my favourite overcoming tool. Writing a blog is a focused habit of writing that I use as my therapy, my release, my way to help, my journey to memory, my connection with my community. If you would like to try blogging too, I recommend it. It can open doors you might never imagine. Being part of the blogging community has also introduced me to some of my favourite regular blog reads. It has given me a format for my research and learning around Dysautonomia and an avenue for meeting people I may never have met if I hadn’t begun to write. I can’t thank Kylie at Rainbows and Clover enough for starting me back at the keyboard, or my fellow Dysautonomiac, Michelle Roger, for sparking this blog by doing such a rad job of her own. And of course… Pip Lincolne for teaching me how to make it happen! I hope that someone else out there might find the spark too.  It’s helping me overcome, every day.  Ask me about it!  I have an online course recommendation! 😉

Whatever methods you employ, don’t give up. There are always, ways to overcome.

Find ways to tell people how much you(2)

Have I missed some good ones?
How do you distract yourself from the daily realities of chronic illness?

…and Christine? You are doing brilliantly. Thankyou for being such a stoic, thoroughly great person to infuse and enthuse with. Kia Kaha.  Stand Tall.

NB. to my shame, this one of the only Maori phrases I know, but it is useful and pertinent for a girl like me, I use it all the time!

 

Another Mother: A Story in Two Parts

I’ve been enjoying the writing prompts that are sent to me by a website I write for.
The Mighty are a wonderful platform for sharing stories that illuminate the lived experience of people with disabilities or invisible illness, or the stories of their caregivers and loved ones.  Their tagline reads
We believe in the power of stories,
the strength of communities
and the beauty of the human spirit.

Recently, they asked this:

Describe a time you saw your disability, illness and/or disease through the eyes of someone else.

I haven’t written this piece for them because it doesn’t really fit their format, there will be other things I can write for them.  This is fiction, but close to my reality at various times in my illness.

I noticed another motherPerched in the

See, their prompt got me thinking. It’s hard for me to see my illness through the eyes of someone else.  I don’t think other people have to feel any particular way about it.  But I wish with all my heart it was easier for others to understand it. I fully comprehend the perspective of well people, because I have been one. The sad fact is, that other people very rarely do see my illness.  Even when I am right in front of them talking to them about it.  So I began to think about who I was before.  I think ill people need to remember who we were before. It helps us to understand the gap between.  So this piece kind of evolved out of the idea of what might happen if the ‘other me’ met the ‘sick me’ at a school parents’ function.  What would each of us think? And how hard would we really try to understand each other?

 

other(1)It’s difficult. Attending these school parent functions.  You’d think it would get easier, the more you do.  But no! There’s what to wear and the fuss with hair and makeup.  There’s making sure the husband is home in time and the babysitter is up to speed with the kids’ routine. All the way to the function, we’re lamenting the fact that we never seem to get a babysitter so we can just go out and enjoy ourselves as a couple.  It’s always for work events or school functions.  Hardly ideal dates. We promise we’ll do that. But I wonder if we will. We’re always rushing about and there’s no time to pause and enjoy. It’s difficult, contemporary living. The juggle between work and life balance.

I know my husband will be off talking with a few of the other Dads within minutes of our arrival.  And so I locate my inner steel.  I’m wearing the right shoes, so I pull myself up taller, matching my heeled posture.  A glance around the room tells me I was right to prioritise the pedicure over the gym this morning. Although clearly, most of these women managed both. Polished, white teethed smiles flash across at me as I move over to a group of Mums I know.  We are still uneasy together, but I take a deep breath and remind myself that we are all in the same boat.  We greet each other cheerily and the conversation resumes about the teacher. She is all slender sophistication, that one. I spot her mingling with another group.  A father gazes at her with adoration in much the same manner as I have seen his son.  It’s sweet. I self consciously watch the diamonds flash on a finger wound around the stem of a wine glass.

Wine.  That’s what I need!  I smile back at the familiar faced group and make a quick detour to the bar.  Hubby catches my eye and nods a silent order. Fortified by familiar feel of the cool glasses in my hands I deliver his and make my way back towards the huddle of women I’d been chatting with.

On the way I notice another mother perched in the shadows along the side of the room. She looks a little pale and is a bit hunched over.  Uncomfortable in her own skin.  I feel for her, and I wonder if she is a bit socially awkward. Then I notice her cane. Oh, she must be that sick one.  I heard some of the mums talking about her once.  Her son is a playground troublemaker.  I remember making a mental note to avoid adding him to the birthday party list. Apart from looking a little unsure, she doesn’t really look sick. I couldn’t remember what it was that was actually wrong with her.  Something weird. Maybe she’s weird?  I thought. She doesn’t usually come to these things, I wonder why she is even here tonight, if she is not even going to mingle?  And then, in spite of myself, I am walking towards her, smiling and pulling up a chair alongside her.  I really hope I am not going to get stuck here for long.  I do find myself in these situations, don’t I?  My hubby always rolls his eyes at me when I do this.

Talking with her isn’t easy. She is struggling to smile and make small talk. Her husband looks our way and sends me a thankful smile. Oh no.  Now I am really stuck. But before too much longer, we have relaxed into a conversation.  We talk about our children and the upcoming school play. There is some laughter and commiserations about the hassles of dealing with babysitters. Hard to find good ones these days. I find myself looking at her intently. There is a shadow of someone else around her eyes. Did I once know her, before she became ill?  And even though I am internally telling myself not to,  I ask her about how she got sick.

She seems hesitant to talk about it, but I settle in to listen. She exhales and begins to tell me her story. I was much like you, she began.  And what she told me filled me with discomfort.  She got a bad virus (who hasn’t at some point been felled by a virus?) but for her it was the start of something much worse. Her heart stopped working properly. An abrupt change in her ability to stand, dizziness, nausea, the loss of other functions.  The list went on, she said, but she spared me the details. Everything, she said, that bodies do automatically.  I began to imagine what that kind of broken body must be like to live in. But I didn’t want to imagine it for long. I’m ashamed to say it, but hearing her story made me wonder if I could handle what she was going through. Six years she’s been sick for. Almost the entire length of her son’s life. I didn’t think I could.  My mind flashed through all the normal tasks of a normal day. No, there is no way I could manage being sick like she was.  I wondered, briefly, how she did it.  And then a desperation to be talking about anything else overcame me.

I thanked her for telling me all about it, I think I told her something like she was brave. I think I patted her hand.  She thanked me for coming over, looking across towards the huddled groups around the bar and graciously giving me an out. Thank goodness, I thought, as I asked her if I could get her a drink.  She asked for a water, so I went to get her one. When I returned her husband was back with her. She was looking paler.  He had leaned in close to hear what she was saying.  I unobtrusively put the water on the table near her knee and slunk away to my own husband’s side.  His hand slipped into mine and I squeezed his back. I doubted if I could explain to him how glad I was to have the ordinary troubles of hair, makeup and babysitters, the general ‘difficulty’ of going to a school function. Then someone asked me about the woman I had been talking to, the one, you know, with the boy who was often causing trouble.  I looked across to where she’d been sitting and she was gone.  And I told them that she was really nice.  Much like us.  Only dealing with a whole lot more than most of us understood.   I saw the smile flicker off the face of the asker.  The inward groan. I didn’t like seeing my thoughts etched out so plainly on someone else’s face.

And then I was drawn into a fun conversation, ordering another wine and moving on. I shook off my unease about the things she said, the alternate realities I’d rather not consider.  There was nothing I could do, was there? And she’d gone home. Really, there was no point in ruining a great night.  These school parent functions are great once you get into the swing of things.

I do think of her every now and then. When I am organising a party list, or doing mother help at school. It might cross my mind briefly when I am loading groceries into the back of my car. Or sometimes, when I am looking at my face in the mirror. And like the first time, the thoughts come and then they go. Because who am I to think I have anything useful to offer?  It’s difficult. It’s a juggle. And I move on.

____________________________________________________________________

otherIt’s difficult. Attending these school parent functions.  You’d think it would get easier, the more you do.  But no!  There’s all the pre-planning and resting up that I need to do for the ability to do one night out.  Extra medication.  Mental fortitude.  And there will be the payback afterwards.  Days crashed in bed. More wasted time while the tasks for the family mount and mount. I don’t get to many of these sorts of things, but I try to attend one or two a year.  And I love the drive there, hand on my hubby’s knee.  Feeling like we are on a real date, even just for the time in the car.  The beauty of the city lights reflected on rain soaked streets.  The privacy and togetherness of our car coccoon.  Just us.

I didn’t manage to do my hair or nails, those things seem to have gone by the wayside. I did manage makeup.  I check it in the passenger mirror.  The woman looking back at me is puffy faced, tired and pale. I wonder where my real self is hiding.  Somewhere on the other side of illness. I wonder if she is waiting for me there. If we will recognise one another.  But there is so much for my husband and I to chat about while we make our way through the traffic that I am soon distracted from my own reflection.  Any alone time together feels like we’ve rewound to the early days.  I look across at his profile and marvel at how I still feel this way after so long.  After so much water under the bridge.  He’s a good man, my man. I wish he didn’t have the dead weight of my illness to carry with him everywhere he goes.

When we arrive, the difficulty of walking from the carpark to the venue takes it out of me. I send my husband into the throng and perch in the shadows of the room, hoping that no one will talk to me.  Hoping that my hammering heart will slow to a calmer rhythm and the planes of the room stop warping and fading on the periphery of my vision.  Hoping the nausea will subside so I can form words without retching. I  want to be at home.  I wish I could fast forward to the end of the function.  Why am I even here, if I am not able to mingle?  I see that my hubby is having an animated chat with someone and it brings me relief. Maybe if he talks to five or so people, we’ll be able to consider the job done and go home. I wonder why I push myself to be part of a group of people who don’t actually want to know about me, about us. I don’t know.  But somehow, I know that I desperately want to be a part of this world, to know about them. I remember, in flashes of colour and animated laughter, what it felt like to be out with friends, drinking and talking about interesting things.  So often these days my only conversations are about illness.  With doctors, with other patients, with myself.

And then one of the mothers comes over to talk to me. She seems curious, and nice about it. It feels good to be able to explain why I am lurking in the shadows. I wonder if she can tell how much I long to stand and laugh in one of those sociable huddles. How I wish my son were more a part of things in the playground. And then, as fast as she arrived, she has gone.  I am jealous of the ease with which she sways across to the bar in her incredible shoes. I feel the old uncomfortable conflict of opening up. My hubby comes back,  he knows my best-before date has arrived. We make a move to go. I take a sip of the water she brought me and an unbidden sting in my eyes ushers me out the door.

I do think of her every now and then.  When my son is left off another party list, or I can’t volunteer to help with a school event.  Even when I am doing something as ordinary as filling in my online supermarket order. Or trying to find myself in the mirror. The thoughts come and then they go. Because who am I to think I have anything useful to offer?  It’s difficult. It’s a juggle. And I move on.

Tyranny of Time

There will be time, there will be time    
To prepare a face to meet the faces that you meet;    
There will be time to murder and create,    
And time for all the works and days of hands    
That lift and drop a question on your plate;           
Time for you and time for me,    
And time yet for a hundred indecisions,    
And for a hundred visions and revisions…

from the Love Song of J.Alfred Prufrock   by T.S Eliot

Drawing by Rachel F.Cox(1)

I’ve written before about how the word chronic comes from the latin word ‘Chronos’ for time. Chronic illness simply means long-term illness. It’s a marathon on every level.  Recently, someone asked me what the hardest aspect of chronic illness is.  Well it might surprise you to know that, for me, it’s not the lack of understanding from society at large.  That is frustrating, but it is something we can actively work to change. And it is not the endless symptoms, medications, treatments and consultations with medical professionals. That is sheer endurance; teeth gritted in perseverance, but not the worst aspect of this life. It’s not even the heartbreaking armchair view of watching the fallout of your chronic illness on your family and friends. It’s something more insidious.

It is the ‘chronic’ nature of chronic illness that is the hardest thing of all. Can you imagine getting sick and being told that you will probably never be well again? Knowing that you will struggle through today, tomorrow and all of the tomorrows beyond that?  Can you imagine knowing that you’ll need to find, from somewhere, the fortitude to handle that?  Because, as T.S Eliot expressed in the touchingly sad poem ‘The Love Song of J.Alfred Prufrock’; ‘there will be time’.
So much time.  Elastic, interminable, confounding time.

And you will use some of it to ‘prepare a face to meet the faces you will meet’.  It will take a great deal of your energy, because you will learn, quite early into your chronic illness, that people don’t really want to hear the truth of how you are.  They’d rather you deliver them a smile and something easy so they can move on. And as time goes on, you’ll prefer that too.  It’s so much less soul destroying than trying to explain into the chasm of disinterest staring back at you.

You’ll spend aeons, deep in your own thoughts.  You’ll find entire worlds there.  Ideas you will kill, relationships that will die. Hopes that will shrivel and fall by the wayside.  Sometimes, entire days will be born and end before you have managed to make a step.  But you will find there, other ideas, dreams and pursuits you will nurture.  The distraction of creating things might just lift you from the fog of your chronic illness, for a time.  You may even create an entirely new you. A phoenix from your ashes. And there will be time for all that.

You will ask yourself, in various ways, for a meaning in all of it. You will send your questions out into the ether and stretch the threads of understanding, like fragile webs, across oceans and intellects.  And perhaps you will understand some things. You may find answers, or may not. But the questions will rest, heavy in your heart. The antithesis of progress, the weight that pulls you backward. The burden of your days.

You will lose your certainty about all of it. You will weigh things up, second guessing yourself, trying to ascertain the tiniest of difference between one option and another. This symptom’s severity and that. And you will imagine futures that beat the odds, tiny tendrils of hope that grow from innocuous research and improbable scientific findings. You will hold these visions dear, until another passes across your screen. And you will revise.  There will be ‘time yet for a hundred indecisions,    
And for a hundred visions and revisions’.  And you will let them fill your mind and wash over your body, until you no longer care for their details.

Because this is what time gives you. The spiral of all things; a fibonacci frond of futility, fragility and future. A thousand ways to make it through.  Sustained only by the fortitude of what lies within you.

So, it is time. For me, that is the hardest thing about living with chronic illness. The best advice for handling the tyranny of time, lies in acceptance. But that is a hard thing to find,  sometimes it flies away in the face of the realities of illness. It must be held like a butterfly, so you don’t destroy it’s wings. Lightly, with wonder. Breath caught in a moment of it’s beauty. Have you found acceptance as you travel time, across the days of your chronic illness?  And what would you say is the hardest part of dealing with chronic illness, for yourself, or a friend or family member who is ill?

What helps you?
For me, it is reading poetry, writing, thinking and creating.
It is letting the ‘slow’ seep into my bones and watching the storms roll over. It’s letting go in tiny increments of the girl I used to know. And believing, even when the sands are trickling faster through the hourglass;

‘there will be time, for you and for me’.

Sarah Phelps -The Dragons

This guest post written for The Chronic-ills of Rach by Sarah Phelps. She is a fellow Dysautonomia patient who has just had a pacemaker inserted.  There relatively few of us with pacemakers, glad to have you among us, Sarah!  I wish you many happy paces with your new bionic addition!

Today, as she battles her post-op pain, here on the blog she tackles the all-to-familiar frustrations of dealing with the Medical Receptionist.  Sarah is also a caregiver to her chronically ill husband, so she has double the encounters with receptionists! Can you relate?

If a doctor's time is gold, then
Source

If a doctor’s time is gold, then receptionists are the dragons that guard it. This makes phone calls to doctors’ offices tricky. I realise doctors are busy people, and I’m glad that they have a team of people to make sure they’re not overworked or overbooked, that they have time carved out for lunch or a cup of coffee.

But it means that dealing with a receptionist is an art form. It requires patience and understanding, but also firmness and a good handle on how the system works. “No, I’m sorry, that appointment is not soon enough. My husband has been marked by the doctor as a category one patient – he needs an urgent appointment”.

If you’re lucky, when you call you get a receptionist with medical training, perhaps one who knows the names of relevant medications, and is able to identify side effects that need the doctor’s urgent attention (e.g. ridiculously low blood pressure numbers). If you’re unlucky you get a bad-mannered or frustratingly clueless one. The other day I had two in a row.

Me:“Hi, I’m ringing to check on the status of the referral the doctor was going to write for my husband?”

Receptionist:“What’s your husband’s name?”

Me:“Daniel”

Receptionist:“Okay…let me see…yes, we have that referral here.”

Me:“Excellent, is that the updated referral?”

Receptionist:“I’m sorry, I don’t know anything about that…”

Me:“Can you check for me?”

Receptionist:“Sure…I’ll just pop you on hold”

*5 minutes of listening to “Your call is very important to us…please wait”*

Receptionist:“Hello…who is this?”

Me:“This is Sarah”

Receptionist:“And what are you ringing about today?”

Me:“My husband’s referral. It’s quite urgent”.

Receptionist:“Right. And what was your husband’s name?”

Me:“Daniel”

Receptionist:“Okay, let me see if we have that referral here…”

Me:“You’ve already checked that. You were going to see if it was the updated one…”

Receptionist:“Oh! That’s right! Did I put you on hold? Sorry, I forgot all about you. Never mind, I can see that we have a referral here for David.”

Me:“No, my husband’s name is Daniel. Not David.”

Receptionist:“Well that’s confusing. This referral clearly says “David” on it.”

Me: “David is the doctor’s name.”

Receptionist:“Oh! Right. Well, do you happen to have David’s birthdate?”

Me:“David is the DOCTOR! No, I do not know the doctor’s birthday.”

Receptionist: “Oh. Oh! Well, do you know Daniel’s birthdate?”

Me:“Yes, it’s ** May ****”

Receptionist:“Okay, thanks for that. Wait a minute, is your husband David?”

Me:“DAVID IS THE DOCTOR!!!”

Receptionist:“That’s right! And your husband’s name is Daniel. Well, we do have a referral here for him”.

Me:“Yes, but it is the updated one?!”

Receptionist:“Oh, I’m sorry. I don’t know anything about that. Let me get

one of the other receptionists for you…”

A quick chat to a different receptionist showed me it wasn’t the updated referral, but thankfully she dealt with that and then sent it off.

Right, next phone call…

Me: “Hi, the doctor asked me to ring and update him on how I’m going with this new medication.”

Receptionist: “And your name is?”

Me: “Sarah”

Receptionist: “Eh? What’s that?

Me: “Sarah”

Receptionist: “Thea?”

Me: “Sarah!!!”

Receptionist: “Maria?”

Me: “SARAH!”
*sigh* This is going to be another long phone call…

How do you go with phone calls to doctors’ offices? I think you get better at it with practice – and I’ve had a lot of practice. A friend of mine calls my phone style “take no prisoners”. I tell her I learned from the best. My Mum is always happy to patiently wait for an appointment when it’s not urgent. But if it is urgent, although she’s never rude, she’s firm and won’t be brushed off.

Got any stories about your dealings with the dragons?

xx Sarah Phelps

Claire Gawne: The About Face

Claire Gawne is a Melbournite and fellow Dysautonomia sufferer. Active online in various volunteer roles as well as her biggest role, promoter and cat-mum; Claire is a positive, upbeat, funny girl.  She wrote this piece for the Meet my Peeps series, all about the benefits of pet ownership.
Meet my friend Claire and her friend, the Gremlin….

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theaboutface

My housemates stand in the door to my room. The don’t even have to speak for me to know what they’re going to say. The old arguments tumble out, and my wearied responses are rattled off. The debate over whether or not to get a cat has raged for months, the pro team enthusiastic and numerous, the anti team steadfast but alone. They showed me pictures of adorable cats (as if I didn’t already see enough on the internet anyway!) and waxed lyrical about kitten toes and purry snuggles, while I extolled the virtues of fur free home and worried about the effect a ball of fur would have on my asthma.

I could sympathise with my housemates’ position. I was a cat person who had suffered growing up in dog person household. I loved how cute and snuggly they were. I looked at pictures of other peoples’ cats on the internet, but I was uneasy about owning one. I struggled enough to take care of myself, how could I take care of another living creature? And what if all that delightfully soft fur was too much for my embattled lungs to handle? What if the cat had to be returned?

a picture of Gremlin the cat trying to catch bubbles, with quote text "I struggled enough to take care of myself, how could I take care of another living creature?" -Claire Barnier

Still, I found myself more and more fixated on the idea of a cat. I had become obsessed with a particular breed – the Exotic Shorthair. Combining the adorable squished face of a Persian with the practical short fur of a British Shorthair, it looked like a teddy bear. An adorable, living teddy bear that would provide hugs on tap.

In a complete about face, it was me that ended up buying the cat. His name is Gremlin, and he’s a ginger and white male Exotic Shorthair. He is undoubtedly the best cat ever. I was instantly in love. My ability to breathe be damned, he was staying!

Claire & Gremlin(1)

Pets in general, and cats in particular, have been shown to have huge health benefits for their owners. Improved cardiovascular health, lower rates of depression, and one I was particularly hoping to capitalise on – fewer visits to the doctor.  While I didn’t expect my new furry companion to cure me, it became abundantly clear the benefits of having a pet were varied and abundant for people with chronic illnesses.

Despite having four housemates, I often found myself home alone, or awake at absurd hours of the night; having Gremlin meant that I always had someone to talk to. I was also surprised how much I relished having someone to think about and care about beyond myself. Gremlin was a welcome distraction from my own problems. It gave me a sense of purpose and made me feel needed in a way I hadn’t for a long time, yet without any intolerable expectations on my time and health.

Gremlin was also an amazing listener. I would come home from an appointment to find him dozing in the exact same spot I had left him in two hours ago, and he would purr away while I told him about my uselessly vague test results, or the scary potential side effects of a new medication. And then at night, when the house was quiet and the last tram rumbled by, he would curl up against my legs, all snores and purrs and soft fur, and I’d sleep better with the weight of him against me.

More peer pressure, this time from a close friend, led to me starting an Instagram account for Gremlin (maybe in the hopes that I wouldn’t flood my friends Facebook newsfeed with picture of his antics!?) For those of you unfamiliar with Instagram, it’s a social media platform focused on sharing photos. I thought that at most I might garner 200 or so followers (a respectable amount for your average user) upon whom I would foist endless photos of my cat. My expectations were low, which might explain why I was so overwhelmed by the incredible experience that followed. Thorough judicious use of hashtags (the best and most direct way to engage with IG), and an investment of way more of my time than I will ever admit, I quickly amassed followers.

Two years later and I have just hit the 15, 000 mark. More incredible than that is the wonderful, genuine friendships that I have made. It’s an amazing community of people, bonded through our mutual love of cats. Everyday I get to laugh at the absurdity and charm of cats, imbued with their own personalities by their humans. I’ve seen people help each other, offering advice on pet care, digging deep to raise funds for medical treatment, and offering love and support at the devastating loss of beloved pets. It’s a weird and wonderful world, where yesterday I was admiring the bowtie collection of one account, while discussing starting a cat commune with several others.
You can find Gremlin on instagram here.

The instagram cat community has grown, spread and evolved since I joined. I have become Facebook friends with the people behind several of my favourite accounts, and got to know them as humans in real life, too. I have seen art projects and pay-it-forward initiatives flourish. This year the first cat convention (CatCon) will be held in LA, and I’ve seen people excitedly planning meet ups of both humans and cats!

For me it has been an incredible experience that has allowed me an identity and a focus beyond my illness. Friends of friends know me as ‘Gremlin’s mum’, and people gush with excitement about meeting him. Tonight before bed, I’ll swallow a handful of pills, and then I curl up and scroll through hundreds of pictures of cats, each one a friendly, familiar face. I’ll look down the bed at the friendliest and most familiar face of all, curled up against my leg, snoring louder than should be possible for something so small.

And I’ll be grateful for everything he has given me.

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Do you have chronic illness and a pet?
Tell us about how your pet helps you…

Q and A

Last month, I had to deliver a ten minute talk …about me.  My story.  It was part of the block weekend for the Leadership Programme I am doing.  The programme is about leadership in social change and it is challenging my thinking in lots of ways. I really prefer writing to talking (I know some of you will find that hard to believe!) and speech making isn’t really my cuppa tea.    But I started doodling, as you do. I doodled lots of question marks.  And then I made a real cuppa.

www.rachelfaithcox.com(11)

When I returned to my doodles, I stared at those question marks for a long time.  And it occurred to me that the best way to tell my story, was to do it using the defining questions of my life. There have been so many things I have wondered, but I pared them down to the bare minimum.
So! Here is what I came up with.

My Life, in Fourteen Questions:

I am a kiwi girl, born just after my parents completed bible college in Australia. My parents felt moved to work on the mission field in a third world country. So I was raised in Papua New Guinea, then I went to boarding school in Australia and soon after that, they went to China. These were the locations of my upbringing. In total, I attended 13 schools, four tertiary institutions and eventually moved back to New Zealand when I was 23 years old.

There were lots of things about my childhood that made me think.  And one of the first big questions I remember thinking, was:

"What makes us think our religion is more right than theirs?"

I liked to think about things as a kid.  And I started to notice other odd things about our world.  I noticed that when I was at the international school in PNG, there were more than forty nationalities of kids and everyone played together. Where we were from wasn’t even a factor in the forging of friendships.  But when I went home to New Zealand on furlough, people teased me for coming from a place where the women wore grass skirts and showed their boobs.
I was an outsider in my own country.
I began to think,

"Why do people have to be the same to be accepted?"

In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:

“What is the origin of thought?” “Are we inherently good… or evil?” “Is all this real, or just a figment of my imagination?” “Is life governed by fate, or are we self determined?” “Why are we here?” (and you kids from the seventies and eighties will relate to this one) 
“Are they gonna drop the bomb, or not?”
But these deep questions were all overwhelmed by a far more pressing issue:

“How do you pash?”

(Note to teenage self:  Mum’s historial romance novels were not the place to search for this information.  “She explored his mouth with her tongue” was a stylistic interpretation, not an instruction).

By this time, I’d been given the nickname Falling Tree because I was fainting a lot.
No… not because of boys (but there was plenty of swooning, too… I’m looking at you Morten Harket)!  I made it through my final year of high school and got into a competitive Journalism degree at a Sydney University.  I was ecstatic!

My well meaning Dad thought journalism would corrupt me, so I wasn’t allowed to do that course.  But a year later, when I reframed my University ambitions to encompass a career path ‘better suited for a woman’ I was allowed to go.  I embarked on a degree in Education and Teacher Librarianship.  Instead of writing words, I planned to surround myself with them.
But I wondered,

"Why does being a girl have anything to do with it?"

It took me seven years to get that degree (it was a bit boring).  Across that decade, I moved countries, got married, and divorced, and valiantly embarked on Project: Find a compatible Handsome Prince. There were quite a lot of frogs to kiss, so I used my knowledge of pashing with great determination.  Surely one of those frogs would be him…?!  And all of a sudden three wonderful things happened in a short space of time.  I found my man, we bought our first house and had Bee and Little Zed. All my dreams were coming true.

Then one day I got the flu, and I never recovered. Can you imagine that?  I was constantly dizzy and fainting a lot. But the faints were actually my heart stopping. I was fitted with a pacemaker to keep me ticking.

I asked a lot of questions during those early days of sickness, but the biggest one was

"How Long will this Last?"

No one knew.   Other parts of me starting going wrong: digestion, bladder and bowel function, temperature regulation, cognitive function, I couldn’t sweat properly, my pupils were not reacting properly to light, I had constant nausea and dizziness every time I moved to stand.  My blood pressure and heart rate were all over the place. I began to experience burning, tingling and numbness in my hands and feet, I struggled through daily chores. I had to quit teaching and we had to take in home stay students to cover my loss of income. The fatigue swamped me. My gait and mobility started to change. Every day was an exercise in pushing through. Pacing. Planning ahead.

I ended up in front of a neurologist who explained that I have a progressive form of autonomic nervous system dysfunction called Pan-dys-autonomia.  That covers all the automatic things your body does.  I know some of you here might relate to that. What made my problem odd was that I had it without a primary diagnosis. Dysautonomia is common in late stage MS and Parkinsons, aspects of autonomic dysfunction affect people with spinal cord injury too.  But the cause of mine was elusive. Six years of watching the progression, endless tests, treating the symptoms and fearing the decline and fall of my future led me to this desperate question:

“Can’t something be done?”

That question was met with averted eyes and shaking heads. Do what you can with your family now, I was told. Before you can’t anymore. I didn’t like that scenario. We embarked on a proactive memory-making schedule. A family holiday, the prioritising of togetherness. And I researched. My research led me to other patients overseas.  I listened to their stories, finally finding people who understood. I began to think deeply about the issues that face people like me.  People with ‘invisible’ illnesses, disability and accessibility issues that aren’t immediately evident. People with rare diseases or poorly understood diagnoses. I wanted to know what could be done for them, too. The injustices of all those lives lived beneath the radar began to burn my brain.
It led to this question:

“What can I do?”

I was offered some work writing for an overseas blog. And I remembered that I like to write.  So I started to write for more people, and even for myself. Blogging led me to ask many more questions, but for the first time I was beginning to see that it was leading me to answers too.  About me, about my purpose, and the beautiful, simple idea, that I could do what I do best.
I could write about it!

One day, I found a Youtube video by a specialist overseas who was treating patients like me, and getting results.  My general physician didn’t want to know. So I pushed and I fought and I learned to use my voice with sometimes, quite intimidating doctors! I kept writing for The Invisible and they began to respond. I wrote for me and began to take action. Until finally, I found a specialist who had read the same papers as me, who had seen the same video. He started me on a new treatment regime in January and it is so far looking really promising.
Fingers crossed!

And here I am, feeling better than I have in six years, embarking on the Be.Leadership Programme, and wondering

“Where will this lead?"

I know first hand that while we are all, to some degree,
defined by what our bodies can do and not do;
more powerfully, we are defined by
what we think,
by how we feel,
and by what we can do about that.

I think we have a responsibility to
help people understand
that our common humanity
is bigger than religion,
it is deeper than culture or race,
it is more practical than philosophy,
it’s broader than gender
and more timeless than life spans,
it’s our world’s biggest learning challenge
and it even transcends our physical abilities.

Those questions of mine have taken forty years to percolate. And I am just beginning to understand that they all point to the same thing.
That we, at the heart of things, have more in common than we don’t.

I am so grateful to have found an authentic way to connect my heart for social change, to society.

“How did I get so lucky, to have my heart awakened
to others and their suffering?”

Pema Chodron

Q and A
Q and A
Questions and Answers

Top Tips for Chronic Illness Patients

These are my best ideas for dealing with chronic illness.  Got some I haven’t thought of?  Share your ideas in the comments, I’d love to know your thoughts…

Picture of a girl in a robe, asleep on the sofa and the words 'top 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.
*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.

Chronic Illness.  Top tips for dealing with chronic illness.