When Life Gives you Lemons

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Tonight at the dinner table, CC asked me why the fruit bowls are overflowing with lemons.  I explained that it is lemon season, and a dear friend had given me a bag from her tree.  Zed said, “Let’s make lemonade!” and I remembered.  That’s exactly what you are supposed to do when life gives you lemons.  So the girls got stuck into clearing up and Zed swept the floor while I made sugar syrup for the lemonade (1 cup sugar to 2 cups water, dissolved in a pan on the stove, set aside to cool).

I’ve been a bit grumpy with life lately. Tonight was a perfect antidote.
All you do is add the juice of two bowls of lemons to the sugar syrup.  The dilute the concentrate 2 cups to 1 cup of water.  Easy peasy, lemon squeezy!  Tart, but delicious!

Just like life.

Here are the pictures of our happy-making night of lemonade making.  🙂
Have you ever made lemonade?  Either the actual kind, or the metaphorical kind?

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haha!  Love these kids.  CC, Bee, Zed and XiXi.   🙂

Jessica Bee -Telling Tiles

Today’s ‘Meet my Peeps’ Guest Post comes from Melbourne. Jessica Bee is a dear online friend of mine, a social extrovert (rare flowers in the online world, those extroverts!) and a social worker.  After researching tirelessly, she embarked on the Levine Protocol and has seen remarkable gains with her Pandysautonomia, so much so that she has been able to return to part time work and is beginning to rebuild her life.  Jessica is generous with her heart, her time, her support and her wicked sense of humour. Here, she gets reflective and discusses her journey into illness, the impact on her relationships and the gains she has made. Oh, and the state of the tiles in the shower. I know! You can already relate!  Those tiles always tell the truth!

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Your body doesn’t give up the game at thirty. Thirty is buying houses and maybe having kids, and travelling and learning to bake. It is getting past the drinking until you fall over. It is realising your parents are just people like you and getting your cholesterol checked for the first time in your life. It’s breathing a sigh that you escaped your twenties without major organ damage, bankruptsy, untreatable STI’s or pleading insanity. Thirty is the calmness of finding the person you plan to set up house with forever, or realising you just want to set up house with two of every animal (and maybe a few extra cats thrown in for good measure).

For The Doc and I, thirty was meant to be about having babies and getting married and juggling careers and family.  We were meant to be having dinner parties, just to discuss that struggle for the rest of time. It was meant to be about life being easier, more predictable, and nourishing and fulfilling in every way. We were meant to have adventures, until the arthritis would set in.  After that, we were meant to creak along together until one of us forgot the other’s name, slowly fading away until there was nothing left of us in the world.

But then I got sick. I hit 30, and my body hit pause. The onset was sudden, as it is for many of us. One hour I was at the gym in my matching gym wear and shoes with complicated arch support; the next hour I was home, on my couch, and I could no longer stand. Then I was in an ambulance, in those same clothes, not knowing that I would not put them on again for almost 2 more years. They scratched their heads. Something was wrong, but they didn’t know what. They watched me and speculated and collected body fluids and blood. They dehydrated me and scanned me, prodded me and watched my heart through their wires. When that failed, they read the journal articles I brought them. I was in hospital so regularly; I was never sure where I was when I woke up.

I slept with the lights on for 6 months. I woke The Doc, panting and terrified, and he was left to decide if I had crossed over from ‘feet up the wall and wait’ to ‘ambulance’. When they told us what was wrong, it was The Doc who remembered the positive things- that it was likely (in reality, this was only a possibility) I’d feel much better within 5 years, that it would not kill me; that I would be ok. That he would be there by my side for the five years and then we would live our forever again. I remembered only the bad- I was sick. I was thirty and sick. I was thirty and couldn’t work. I was thirty and couldn’t give my partner the kids we had promised each other. I was thirty and I couldn’t even clean my shower.

If a doctor's time is gold, then(1)

He meets more of my needs than a man should ever have to, and this isn’t counting the ones he knows I have that I’m not yet aware of. He also, deep in his bones, believes that the only space in a shower that needs to be clean is a 30cm square where you stand under the water. True story. For a whole year the area outside of that 30cm square taunted me with my inability to give him this one simple pleasure that he wouldn’t even know existed- a secret between me and the world, something I did because somewhere in him I was sure he enjoyed the glisten of the tiles exactly like I did. And somewhere else in me I was furious at him for not just knowing that those 3-tone-mouldy tiles captured the complete failure of my body. Why couldn’t he just clean them, so I could stop being taunted as I gasped and groaned through every barely conscious shower?

Being sick like this, it is easy to feel like a terrible human being for being cranky because your amazing partner doesn’t clean the shower the way you want him to. It was only when I allowed myself the luxury of a normal relationship (including being cranky sometimes) despite being sick that I began to rediscover my worth. I couldn’t vaccuum- but I could give him undivided attention when he told me about his work. I couldn’t make him dinner- but I could scratch his back when he was falling asleep at night. And I sure could get mad at him for not cleaning the shower.

Most of my friends are gone. It’s a simple reality of being sick- you’re different, they are not, and simply put, they have no comprehension of what you’re going through. They might not care much, or they might not understand that in the bleak tarry mess of early days with dysautonomia their mere presence could have lead you out of some of the blackest waters you have ever known. Maybe they are scared of saying too much or not saying enough… or saying the wrong thing.

The luckiest thing that has happened to me (aside from somehow charming The Doc into my life) was finding other people who live like me. Words are stabbed into the keyboard like the slurring that ensues after two bottles of cheap red wine. Yet without the haziness, morning regrets and pap smears. Unless you have ever had a need to, you can’t begin to imagine the comfort gleaned from knowing that somewhere in your 3am, a friend is in her 3am too. Suddenly your world is no longer tumbling away, or even if it is, you’re tumbling together and by 4am you’ll have hit either rock bottom, or sleep. I don’t know how I would have made it through without The Doc- or my Dysautonomia group. Finding your herd and knowing you’re not the only one with stripes*.

The Doc still hasn’t cleaned the shower. I was one of the lucky ones who, for reasons unknown to the medical world, have gained function back after the first few years. I haven’t recovered, but I’m cleaning the shower, and somewhere, deep inside The Doc, he knows the joy of glistening tiles again.

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*The ‘stripes’ reference relates to a common saying in Medical circles.  When Med students are training, their seniors will often say with regards to diagnosing patients: “if it looks like a horse and it sounds like a horse, it’s most likely to be a horse… not a zebra”.  And so the zebra has come to represent patients with diagnoses that weren’t ‘the horse’. Patients with rarely diagnosed diseases sometimes refer to themselves as ‘zebras’ or refer to their ‘stripes’.

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

The Bunny, the Book and the Blog

and a happy little side effect called euphoria

Oh it’s a buzzy world I inhabit today!  I’ve just had my monthly infusion and that makes me feel a bit manic, a bit weird (just quietly) and like I can manage anything (I think that is the euphoria side-effect, again): only I don’t. Manage anything. Because it’s just a feeling, not a practical reality.

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(it is hard to find ‘a’ words to go with that picture, so A-nother had to do! I’m not tired of them, as that word implies, I am very, very grateful for them).

In reality, I’m here on the sofa, letting the weird win over, waves of bust-outta-my-skin-feeling, crazy, heat, palpitations, fuzzy vision and a yuck post-infusion taste in my mouth.  Thankfully, the flush is yet to begin, I can look forward to that joy tomorrow. So I’m riding it out, resting and hanging out with my bunny-onesie-pyjamioed daughter.  We’ve been giggling.

I like it.  So here we are while I fizz away in my slightly manic post-infusion-way and show her how I post on my blog.  Why? She wants to start her own, how cool is that?… I’ll keep you posted on how that goes!  Here she is, modelling my current reading material.  You’ll see why, soon.

 

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 “So, Mum. How do you write a blog post?”

“I’ll show you!”

NOTES FOR MY GIRL
(and anyone else who wants to write a post someday)

STEP 1:
You find something that you want to WRITE about.   It might be a conversation that you want to discuss, a picture that inspired you, something that riled you or a moment that ‘smiled’ you.  Whatever it is, get writing. Start with some context for your blog piece.
I want to write about a great evening with you, my girl and how it relates to learning to blog.  So I start to tell the story, like this:

We’re in the lounge, my BobbyD, and me.  We’re having our special after dinner cuppa and unwinding; we’re discussing this bookDavid and Goliath: Underdogs, Misfits and the Art of Battling Giants, by Malcolm Gladwell. The kids have gone to bed (or so we think….) and I’m inspired because Gladwell’s way of pulling things together is totally brilliant. I already love his other works, and he has written here about something I am passionate about… the misfit. By the way, have you read ‘Outliers’?  I think it’s essential reading for every parent teacher and coach.  This one looks to be just as good!

…and then you SAVE DRAFT and carry on writing until your piece has a beginning, a middle (and eventually, a clear end) like this:

So anyway, I’ve always loved the story of David and Goliath.  David’s bravery, his self-assuredness, his strategic approach to what seemed like insurmountable odds. It’s a great story for the book to start on. So I’m regaling my hubby with Malcolm’s pithy, easy-to-read, yet intelligent writing style, when our tween enters the lounge. She crosses her long legs underneath her on the sofa and settles in to listen. I pause, and remind her that it is bedtime. She says, “But… it’s just…” and I wait for what usually follows. (Insert here: I’m thirsty/ I have more homework/ One more chapter/ just another hug…).  But she flashes a huge grin and continues,
“it’s just that… you’re cool when you have cuppas and talk about books.  I want to hang with you.”

Is it a cunning ploy? If so, she’s getting good. If not… oh, if not!  I am completely taken by the notion that I might, finally, after ten years, have achieved “cool” status with my girl!  And it’s connected to cups of tea and books! I don’t want to let go of that loveliness, not straight away. Maybe she could stay up. Just a little longer…
…she is clearly very astute.  Because it doesn’t stop there.

In a master stroke, she tells me I am also cool because I blog. That she would like to blog, too. She offers to get my computer, and retrieve some of my secret chocolate stash from the censored location (so much for that spot!) We settle in to write this post together.  We take some photos to use in the post. She wants to know all about how it works.
How cool, is she?!

I’m suckered right in. She’s here beside me now and we are blogging. 🙂

STEP 2:

Gather what you need.  Computer, chocolate, photos.  This is really what you do right at the very beginning, but it came up in the story now, so it will have to be step two.  Yes, Bee.  The preparation is important, it will save you time later.

STEP 3:

Click that button up there to the right that says, SAVE DRAFT.  Then, ADD LINKS to all the text which make sense for linking outside the blog (to relevant websites) and to your own (to something you’ve written before).   Links are the highlighted words in your post that will take readers to other webpages. I will link the text about Malcolm Gladwell’s book so people can find it, and then I will link the text that refers to my daughter, to a post I made last year all about her.  She adds that I should link Daddy’s name to the post I wrote about him
(see? She’s cool and clever).

STEP 4:

Source and edit and UPLOAD YOUR PHOTOS. I keep it pretty simple, I either take photos on my iPhone, or pay and use licensed pictures from Canva (an online blog graphic app). I do that to make sure I am not breaching copyright with other peoples’ pictures.

When you’ve edited them and got them looking just so, add them to your page and make sure the settings are right. I could go on about that, but my girl has to go to bed now, so showing her this bit might have to happen next time I am cool enough for her company…

I interrupt this transmission to put her, firmly and finally, to bed.

Wow.  That was fun!  I think I am going to like teaching her how to blog!  If I am the admin of her site, I can keep it as safe and as private as possible.  She wants to blog about her favourite pastime, horse riding, followed by…
“horse gaming, horse pictures and horse products and horse books and favourite horse gear…” (take a breath, girl!)  I think finding her ‘niche’ will be pretty straightforward!

STEP 5:
SAVE DRAFT.  Check, EDIT, go through your post.  When you are sure it looks right (Bee, that means when Mummy is sure your post is ready, appropriate and proofed!) you can schedule it or PUBLISH it immediately.   I always check it again the minute I publish to make sure I didn’t miss things.  It’s easy to miss things in the wordpress draft format. In fact, I find editing after publishing to be highly motivational!

STEP 6:
Let people know it is there! Link your post to your blog’s facebook page. Add it to the ‘link ups’ or ‘share threads’ you are part of on any facebook groups you belong to.  If your blog has a subscription plug in, people should get an email to say it is there.

STEP 7:
…aaaand, finish with a question or two.  It lets the reader know that you would love their interaction.  It turns it into a conversation.  Much nicer.

Tada!  That is how I write a blog post.
If you are a blogger, is your process similar?
And even more important, are you COOL, too?

 

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Photograph by Bee Cox (my girl)

Ah!  I’m cool, yes I am. Maybe only for one ten year old girl who doesn’t want to go to bed.
But it counts, okay?

 

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…