Home

You are my Home.

I know that now. But I don't know if I truly knew that back when we said our I do's.

I had an idea. An idea created before I stepped into the world. An idea created before time and challenge could teach me what truly matters.

Only on reflection can I realise that what I thought was important back then, missed the mark. My heart was in the right place, it was just young and naive, kinda like the two of us. Not that I didn't love you, I most definitely did, but just that I didn't really know what that meant.

Time has never changed my feelings but it has reworked them. Moulding, reshaping, and kneading. It's pulled apart the pieces and reassembled them over and over. Distilling the original brew, until the true essence was finally found.

My home.

The place I feel safe. The place I feel loved. The place I feel comfortable. And the place where I don't have to hide.

You're there when I need you. Through the good and the bad. And no matter how rough it gets, if you're with me, it is always easier to bear.

You accept me, baggage and all. Pile upon pile of disappointments and hurts. Walls built to protect and to hide. But slowly you've unpacked them or put them in their place.


I know I'm not easy to live with. I can be opinionated and at times, unreasonable. My temper, well that may best be described as fiery. And I am stubborn to a fault. I expect you to read my mind and my moods like a fortune-teller, and get angry when you don't. I am more than a little left of centre and live in a world of my own half the time. And I know I frustrate you. Yet despite it all, you are here. Yet despite it all you still love me.

I owe you. More than I can ever express. The last seven years have been hard, not just for me, but for you. Life threw us a curveball and we had to learn to deal with it on the run.

There have been far more downs than ups. But in many ways, it is easier now. What could have broken, has instead strengthened. Things are more stable, even though the circumstances have become rockier.

After so long together there is a rhythm that is just ours. An unspoken language, knowing looks, the finishing of each others sentences, and laughing at shared jokes. All born by times passage and experiences shared.

You are both best friend and lover. Champion and partner in crime.

You reign in my frantic nature, whilst supporting me in all I want to do.

You know me better than anyone and for some baffling reason still, want to be with me.

I don't say thank you enough for all you have given. But I'm grateful every day that you are here.

So

Thank you for letting me know that it's okay to be me.

Thank you for being there to wipe my tears or hold me tight.

Thank you for making me laugh when I can least find something to laugh about.

Thank you for letting me know what it's like to truly feel loved and supported.

Thank you for two beautiful sons.

Thank you for letting me know family.

And thank you for letting me know the true meaning of the word home.

Because you are, and will always be, my home.

Happy 20th Wedding Anniversary, Mr Grumpy.

I Love You

Michelle xx

I loved The Cure's original version of this back in the day, but really love this cover by Adele.

Making life bearable.

*This is not a sponsored post. The items I'm mentioning are simply ones I already own and love and will hopefully give some inspiration to others to make their environments a little more cheery.*

Since my health has deteriorated again I have found myself focusing on making my environment a place of pleasure and happiness. I figure that I can't change what is going on at the moment (although hopefully the pacemaker will improve things somewhat) but I can change the four walls that surround me.

This is nothing new. I've never understood why practical items can't be beautiful, or why they can't reflect what makes me happy. As I've mentioned before, the batcave is a rather depressing monochromatic salmon/apricot 80's extravaganza. Now we are moving I'm not inclined to change that, but I can add a splash of colour or pattern in the form of soft furnishings or decorations, to make me happy.

Similarly, my couch time can be improved by items that provide a little luxury whilst I'm grey and feeling like death warmed up on a daily basis. Comfort and beauty go a long way in making you feel better physically and emotionally.

Most of what I have has been purchased on sale (red Sale signs are what Mr Grumpy terms Come-In-Michelle signs), at $2 shops, were gifts, hand me downs, or have been re-purposed and re-used from their original purpose. I am not above picking things off the kerb during Hard Waste, or Second Christmas as I like to think of it, and finding them a place in my home.

Luxury and beauty don't have to be expensive but it does need to be purposeful, and meaningful for you. Whilst I love vintage style, colour and pattern, you may be into sleek modern. Finding what works for you is key. When you are stuck unable to get off the couch being able to look at things that make you happy takes on new levels of importance.

Here are a few of my bits and pieces.

Loungeroom:

The pillow. I spend A LOT of time on my couch. When we purchased our new couch, (the last one was destroyed by Thor and Freyja, Great Danes and cheap 15-year-old couches simply don't mix) we picked one with a chaise just for me. It now has a lovely print of my bum and soft soft leather. But to add to my comfort I now have a gorgeous velvet vintage print pillow to snuggle with from Ishka. I love snuggling with it on the couch and it makes me happy each time I see it.

The blanket. My temperature control is completely gone now. I vary between 35-38C throughout the day, no rhyme or reason to the changes. With my frequent drops into bradycardia I am finding myself ice cold on a more regular basis. I have a blanket that I keep on the couch. It's an oldie. I purchased it back when I was working so 7-8 years ago and I still love it. I'd tell you the brand but the tag is so faded I can't read it. But suffice to say, I love to snuggle with it on the couch, or in the car, or out in the garden, or pretty much anywhere.

Pictures and prints. I finally made Mr Grumpy put up my pictures and prints in the loungeroom. Most are gifts but others include things like the first painting I attempted after becoming ill. It represents a break through. A "screw you, Bob", moment. And each time I look at it I think "I did that". That sense of achievement is priceless. I have a mirror I revamped. Pictures from bric-a-brac stores and photos. All are moments that make me happy.

(Each piece has memories. From the left. Angelic Houtcamp print gift for my 40th birthday, Beautiful painting by a local artist from my best friend for my 40th, mirror I found on the side of the road and did up, painting from a local vintage store, conical hat that I bought and wore when we travelled in Vietnam, small 40's print that I found under our house when cleaning it out.)

Clothes. For a long time I moped around in my pjs and old trackie dacks. I didn't realise but they were an extension of how I was feeling about myself and my life at the time. It wasn't until I went shopping with Lady Melbourne that I moved into the idea of pj alternatives. On that shopping trip I purchased clothes that were both beautiful and comfortable. I've since continued that theme. Not to say that I don't still do the pj and trackie dack thing. Sometimes energy is so minimal that a pj day is in order. But I do now try to get dressed each day. I've mentioned Lazybones before and I love their clothing. Their vintage inspired dresses are gorgeous, but it's their Relax range that I wear most days. So comfortable and pretty, the perfect combo. With most of us on a budget I can say their sales are fantastic and that is how I have purchased most of my items. I wear them at home and when I go to hospital. There is something empowering about wearing pretty clothes whilst you have a tube hanging out of your arm. I say this as the woman who wore bright red compression hose and sparkly silver shoes to my first IV session, much to the amusement of the nursing staff. My health can be depressing enough, might as well look fabulous whilst I'm sick.

(Dress and cardigan from Lazybones, so comfortable. Plus added Thor photo bomb. 

Teeth gritting and chest pains post-standing, are one bonus I could do without.)

(Who says you can't sparkle in hospital?)

Mug. I drink two double espressos every morning to try and bring my heart rate up and also because I love coffee. I decided to buy myself a The Walking Dead mug for my 40th, because, well, I could. It's silly and stupid but makes me happy every time I drink from it and that's what counts. It's also on sale on Cafepress at the moment for under $12, brilliant! I also have a gorgeous and delicate, floral tea cup that my eldest gave me for a birthday which I use for my evening cup of relaxing tea.

(Who doesn't need a Daryl inspired mug?)

Scents. Certain scents bring back memories. I burn incense most days. I have one particular brand, Nag Champa which I love. It reminds me of our travels throughout Asia and is very relaxing and is cheap as chips at our local $2 store. In Summer, I burn an oil which is a mix of things like cloves and cinnamon and simply smells like Christmas. In both cases the smells invoke good memories and happy times, so important when you are clasping your chest dramatically on the lounge.

Bedroom.

The water bottle. Given I am mostly home I also need a water container for beside my bed or in the lounge. I have two glass holders. One is a bright red bottle I purchased at a $2 shop years ago. The other, which sits beside my bed is a cranberry cut glass carafe and matching glass. I remember buying it at a gift shop years ago but I couldn't tell you which one. I love it for the vintage feel and little bit of luxury.

(Bad photo, much redder in real life.)

Dust gatherers. This is what Mr Grumpy calls my bits and pieces that have made their way to my bedside table. Most are gifts or little bits and pieces that simply make me smile. I have red glittery robins attached to my lamp (they are also on the re-purposed metal garden door at the top of our stairs), A small vintage silver clock, a gift from Mr Grumpy on one of his overseas trips. A vintage deep green bakelite bracelet again from Mr Grumpy. A Bohemian crystal specimen vase has a posy of tiny drink umbrellas. An old green Depression glass butter container holds my chocolate stash. The list goes on. There are more practical items such as puke bags and pill boxes, but they fade into the background when I look at my other bits and pieces. I can also see into my en suite from my bed, so I try to put flowers in there so I have a spot of colour and life to look at.

(Lindt dark chocolate with a hint of Sea Salt of course)

(One vase is an old maple syrup bottle, the other is a ruby glass specimen vase I bought at a trash and treasure market as a kid. The flowers are from my garden.)

(I also love reading so I use an old pot holder that belonged to my grandparents, 

as a book shelf next to my bed.)

(Everyone needs a leopard print eye mask)

Bathroom.

Bubble bath and soap. This is the one time I splurge. I love my L'Occitane Lavender bubble bath and it lasts for months. My body aches 24/7 these days and soak in a warm bath is just the trick. Our bathroom is in renovation purgatory. I don't look up for fear of spying something with 8 legs poking it's head through where the cornice should be. But I can make the bath itself enjoyable. I also bought a lovely musk triple-milled soap from Sohum which again lasts for months. I keep it on a flowery vintage plate from a set that I scored at a local bric-a-brac store for $2. Add in my candles (from my trusty $2 shop) in old glass jars and it's pampering that's good for the soul.

Body creams. My love for MOR Cosmetics is well known and I continue to feed my addiction. Again it's the luxury aspect. My skin is very dry thanks to the medications I take so I need good quality moisturising. Even the packaging is beautiful and on the days I don't have the energy to rub in cream I have the Marshmallow perfume to pop on so I can at least get the fragrance. The creams and other products are in my bathroom and on my bedside table.

Travel.

The travel drink bottle. This is a recent purchase and again from Ishka. I love Frida Kahlo, her attitude and her art work. If you haven't seen Frida, staring Salma Hayek, do yourself a favour and rent it now. As soon as I saw the drink bottle I had to have it.  One of those impulse buys that makes me happy. Given how much water we have to drink, I am always carrying drink bottles or have plastic bottles deposited all over the house and car. Now I have a travel one that looks good and is also practical.

These are just a few of the things I decorate my life with. I have colour, texture, and pattern, all that makes me happy, and feel pampered. I may not be able to get out much these days, but I make my small world as luxurious and enjoyable as I can. Hopefully you can too.

Cheers
Michelle :)

Treat me right.

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I have made a deliberate effort here on the blog and on Facebook to point out the great medical professionals I encounter. Too often our interactions with the medical profession, the system and assorted allied health, are negative. We need to be reminded that there is a lot of good out there, although it may seem hard to find at times. As a long term chronic illness patient I am a frequent medical consumer. And more interaction equals more chances for some truly appalling encounters, but I am also lucky enough to have found some great practitioners to be part of my team. My cardiologist, neurologist, GP, physiotherapist and OT, and even my local phlebotomist, are all practitioners with whom I have formed good relationships. I feel heard and that my voice, and my experience, is valued. That I am both person and patient and not just a body part, disorder, or patient 34 for the day. It is important to recognise these good relationships and encounters, and even more important to talk about them.

I am also open about the bad encounters. Be it poor professional knowledge, outright hostility and disdain, or complete lack of bedside manner, I've discussed it. But today I was faced with an instance where I wasn't sure I could post about my experience. I am stuck in a place where the balance of power isn't equal. I don't have a choice of walking away and going elsewhere. I am stuck in a position where I feel like I have to hold my tongue, where I would normally say my piece and move on. I am in a place of vulnerability. A place that many patients find themselves in. And it's making me angry.

I don't name practitioners or clinics. That is a decision I made early on. The reality is that one patient's godsend is another patient's arsehole. I don't want to put another patient off from seeing a specialist who may hold the solution for them, simply because my experience was negative. But the reality is that it doesn't matter the speciality or locality. This same situation is played out in clinics and hospitals across the world.

Patients are forced to stay in situations that are sub-optimal. Situations that don't facilitate their diagnosis, treatment, or care. Whether we are constrained by the obscure nature of our disorder, or our geographical location, we are forced to remain in situations due to a lack of choice. The medical profession are the keeper of the keys, and we must beg for admittance to the knowledge we need, and hope that we will be granted access. We have to put up with rudeness, exorbitant fees, huge waiting lists, poor communication, the list goes on and on. An already difficult situation is made far worse by the forces that surround our disorder and medical needs. Forces over which we have little control. When in truth, the disorder should be our major obstacle.

We are forced to swallow our complaints, and silence our voices, to get the care we desperately need.

Do I complain now and risk being told not to come back?
Do I complain now and wait another year to get into a different clinic for the test that I've already been trying to organise since May 2012?
Do I complain now and be forced from a free, bulk-billed list, to a non-refundable $500 private clinic? To find money I don't have?

These are the questions that I and many other patients are forced to face. I pride myself on being an empowered patient, and yet, today I found myself biting my tongue and putting up with substandard service because I need a test I am unable to access anywhere else. For the first time in a long time I felt powerless. And I hated it.

I left exhausted not just from the physical toll that comes simply from the logistics of attending such appointments, but from the emotional toll of playing the game. From knowing I had to balance my need for care against the need to assert my rights, and in this case my need for care won. It is disheartening to know that in this instance I couldn't be the patient I want to be.

I don't believe that the clinic is run by Dr Evil, intent on deliberately making my experience, and the experience of my obviously unhappy fellow patients in the waiting room, so poor and damaging. But there is a definite disconnect between the clinic and the patients they serve. And that disconnect is apparent in the poor coordination, administration, scheduling, interpersonal skills, and general communication. And that disconnect has left me stressed, frustrated, tired and angry.

It is far too easy to become disillusioned with the system and those who practice within it. To borrow a phrase from Dr Phil (I know, I know. I'm embarrassed for myself) "....it takes 1,000 "Atta boys" to overcome one, "You're worthless and no good...." The same is true for our experiences in the medical system. The negative is like a flashing neon light that colours all our other experiences. With each negative experience taking a large bite out of our belief in the good. Be it the overt experiences such as the doctor who told me "when a woman your age walks in with those symptoms it's always in her head", or the more subtle experiences where doctors don't listen, or act like you are nothing but an annoying interruption to their day. Or others like today's tactless experience:

Dr Blunt: what did you do pre-sick?
Me: Neuropsychologist.
Dr Blunt: must suck to really know what's ahead for you?

Each of these experiences make it harder to keep faith in the inherent good that exists within the system.

Power shifts and turns in our ongoing experiences in the medical system. The older position of the doctor being the keeper of knowledge and exclusive director of our care is waning and, thankfully, I have noticed a discernible change over the last 10 years. Patients and doctors benefit when interactions are seen more in a with mind set, rather than the traditional at. Respect is two-way. We the patients have the responsibility to respect a doctor's knowledge and training. But in turn our doctor's need to respect that we as patient's are the expert in our own functioning, and often our own obscure disorder. At our most basic, most patient's just want to know that they have been heard and seen. That in that one consult, they matter.

But it is not just the one-on-one experiences that are important. It is also the associated experiences that surround a medical appointment. Service provision begins when the referral is first sent. It continues with the creation of appointments, the returning of phone calls, the interaction at the clinic desk, all the way to the sending of reports and the reporting of test findings to patients. Hostile or disorganised administration makes the experience so much harder to deal with, especially when your reserves are already stretched. Finding out that after waiting 7 months since the last scheduling balls up mistake, that the test you were expecting to have today is still not scheduled. That you have to answer the same questions yet again, and wait yet another month, before testing, due to continuing administration mistakes, only adds to the overall stress that already exists. To know that complaint could further impact on your access to that test is both frustrating and wrong. So for now I suck it up, grit my teeth and focus on the goal. After which, letters shall be written.

We should have a reasonable expectation that we can respectfully say when we are not happy, without fear of repercussion. And we should not have to put up with substandard service because we are desperate for care.

I am choosing to see today's ongoing issues with this particular clinic as the exception rather than the rule. I am choosing not to let it colour the good that I have encountered.

But it's damn hard some days.

Michelle

Dear Doctor

You tell 'em Pat!

So there's this thing called a Pacemaker, and apparently I need one.

(Gotta love the 70's source)

When I was a little kid I used to love watching The Bionic Woman. Jaime Sommers was beautiful, kickarse, and had a great wardrobe. Plus, she got to hang out with The Six Million Dollar Man. What more could you want? Plus, headlines like the ones above, "an army of "Fembots!" ", who wouldn't want to watch a show with such a catchy tag line?

Well it seems I am going to become The Bionic Woman myself, well apart from the whole tennis pro, school teacher, skydiving, secret agent thing. But that's just details. I do hope I get theme music, though.

My dicky ticker is indeed very dicky, or just a dick. I mean, I knew to certain extent. My bradycardia has been getting steadily worse. This past year it has become more frequent and my health has been in a nice neat downward spiral for some time. Equally, my coping skills have been slowly slipping as my body decided to up the ante and become a complete arsehole. And not surprisingly, maintaining a Stepford persona is hard when you are clutching your chest on the floor wondering for the first time if you're actually going to die. 

A strange thing occurs when you are chronically ill with a weird unpredictable illness. You start to hope for positive findings. Not positive as in sunshine, lollipops and rainbow farting unicorns, but positive as in, please find something concrete wrong with me. So often with this disorder you go in for testing and it's a "good" day so the tests come back clear. Symptoms fluctuate day-to-day so trying to catch them in a one off, short test can be difficult. So part of me wondered if the tests my doctor ordered would show anything. Even my cardio said, Murphy's Law says that it will a good day and come up clear. 

But this time I had the clear results I hoped for, and I'm equal parts glad and terrified. My 24hr holter monitor showed clear bradycardia. Not an hour went past without my heart rate dropping to dangerous levels. 80+ times over the 24 hr period. No wonder I've been feeling like death. 

It's also the first time in the 7 years I've seen my cardio, that she was 100% sure about my options. Pacemaker, pacemaker or pacemaker. I do have high risk factors for the procedure due to other issues (because I'm lucky like that), but it's either have the procedure or risk my heart stopping. So really it's a Clayton's choice, the choice you have when you don't have a choice.

In reality I know that getting it done is the right choice. Avoiding things like a hypoxic stroke, or heart attack, and getting blood to my starved organs is all good. Getting rid of this permanent chest and neck pain and feeling my body randomly shutting down are also a positive. But, ARGHHHHHHHHHHHHHHHHHH.....

At this point it's looks like by early July I will be, The Bionic Woman. Mr Grumpy is already calling me Jaime, because sarcasm and humour with a good dose of denial is the only way to go with these things. 

To say I'm a little freaked right now, may be an understatement. I decided last night that I would meditate the crap out of my stress, only to find that my fantastic meditation skills lower my damn heart rate even further. Well played, Universe. Well played.

So make me laugh Internet. Distract me with bright shiny objects and inappropriate humour. Because right now I'm feeling a little vulnerable and scared.

Michelle

One of these things is not like the others.

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So 40, hey? Tops right? I'm sure it is. Really I am. My sexual prime is rocking. I feel totally in touch with the womanly wonder that is me. It's epiphanies left right and centre. Glitter is thrown at my feet by kittens riding unicorns, as I stroll with confidence around my lounge room. And choirs of angels are singing about the glory that is my 40-year-old body.

Or.

I could be heading to a diagnostic mammogram tomorrow, because even my boobs are stupidly defunct. Happy 40th, now lets squish your miniature mammaries into pancakes/pikelets/poffertjes.

I actually found the lump before my 40th but just couldn't face another broken body part before I made it out of my 30s. There's a limit to the amount of decrepitude a girl can handle before she clocks over into the big leagues. You see I've been down the lumpy boob route for 10 years now. Had my first biopsy before my 30th birthday and had my first chunk of dodgy boob cut out not long after.

I've even written about my defunct boobage before.

My boob is a garden.
Garden VS Swiss Sheese: Update on "My boob is a garden".

But enough is enough. So I waited until after the big four oh, thinking it'd be nothing yet again. But it's never that simple, is it?

Remember that song from Sesame Street, "one of these things is not like the others"? Story of my life. My boobs, small as they are, may be best described as feeling like a bag of marbles, courtesy of all the cysts and fibroadenomas that rattle around in there. But every now and then, one of those marbles doesn't feel like all the others. This is one of those times.

I swear chronic illness is best defined as being felt up by strangers on a regular basis. This occurred to me Thursday, as I lay topless yet again on the table in the GP clinic. My regular GP was booked out. My back up GP had left the practice unbeknownst to me, which meant I had to risk a new doctor. Normally I'd wait till I could get into my regular GP, but sometimes things crop up and you need to be seen (or in this case before I changed my mind). So once more I found myself agreeing to be groped by another stranger.

I lay down whilst she listed off my collection, "one o'clock right breast", " four and five o'clock", "10 o'clock"..... (Is is wrong that I distract myself be thinking of the Play School Rocket Clock, every time I go through this process?). I sat on the edge of the bed. Arm up. Arm down. Whilst she concentrated on my minuscule mammaries. I sat there like the performing monkey I am. Resigned to that fact that any dignity I had is long since past.

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After much in the way of arm acrobatics and going through my lengthy history, I was told that I need to be scanned.

Normally I just do an ultrasound every 1-2yrs to keep an eye on my collection. The girls are incredibly dense (aka stupid) despite being so tiny, so ultrasound is the way to go. But nope apparently that's not enough this time. Now I have to be squished and have the ultrasound. YAY.

Who even knew there were different types of mammograms? Not me. So we're skipping regular and going for the diagnostic one, because I'm special.

When I rang last week to set up my appointments, it occurred to me that you stand for a mammogram. Which could be kind of problematic given the whole 'standing ends in falling over' issue I have with Dysautonomia. I've had visions of me lying passed out on the floor my aging boobs stretched before me nipples still stuck in the plates of the machine. After pointing my dilemma out to the receptionist they have agreed that I can sit whilst they do the scan or at least in between each one. I am also wondering how they will get my concave breasts onto the plates. Surely they need something to work with?

So tomorrow my best friend is coming with me to my inaugural boob squish. If anyone can make me laugh and take my mind off it all, it's her. She's also not afraid to slap me round and tell me I am over-reacting if the need arises. Because that's what good friends do.

No doubt it'll be nothing and all my worry and stress will be for naught. Which will also shit me as I have little in the way of reserves and my neuroses should be reserved for the stuff that does matter. Wasted energy and wasted grey hairs.

How can something so small be so troublesome?

Michelle

This just seems rather appropriate today.

Bradycardia: When your heart goes, meh.

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Bradycardia is a fancy word for a slow heart rate. Kind of rolls of the tongue, doesn't it. Sounds like a cool novelist name, The Heart of Meh, written by Brad Y. Cardia. Fantasy is my bet. There'd be swords and dragons, the main anti-hero would be kickarse but constantly foiled by her need to lie down every 5 minutes. Kinda hard to fight a dragon when you're comatosed on the ground. Though maybe she'd use it to play possum and come out fighting after the dragon had discounted the threat. Or maybe the novel would be 3 lines long as the hero suddenly keels over and becomes a dragon chew toy. That sounds more realistic. (I may be watching way too much Game of Thrones.)

Bradycardia is generally defined as a heart rate under 60. For me 50s aren't unusual, and I'm not usually all that symptomatic. A bit tired maybe but not worryingly so. But when I hit the 40s things start to become unpleasant. When those 40s persist or hit the 41-42 mark it becomes really unpleasant. Now I know that for some elite athletes 40s may be their natural resting heart rate. But lets face it I'm hardly an elite athlete. I'm pretty sure an elite athlete's eyelashs could beat me up and leave me whimpering on the ground, freely offering them my lunch money. Low 40s are simply not a fun place to be. I'm pretty sure I've hit less than 40 but I have learnt that my bp cuff wont register a heart under 40, which is kind of a bummer. I would like to know just how low it is dropping.

Bradycardia is getting the best of me at the moment. I've had it off and on over the years (my max hr of 88 bpm after 10mins on the reclining bike used to bemuse the staff, it also made exercising hard) but of late it has taken up residence in my chest and seems intent on staying. Even when getting IV fluids the last few weeks I was having drops into the 40's and 50s much to the consternation of the staff. Increased fluids in my veins should technically help my heart rate, but no. It's a fickle little turd that doesn't like to be told what to do and decided that it wouldn't play the game.

Last week those who follow on FB will know bradycardia hit hard. As in, collapse in the kitchen, scare the bejebus out of both me and my son, hard. I have to be honest and say I haven't felt that bad before. I could feel my body shutting down. I was ice cold and starting to feel confused. That is not a nice place to be and one to which I don't ever wish to return. The level of pain in my heart alone, is something I could do without. It's been a long time since my family has been worried about leaving me home alone. And even longer since I've been worried about being left home alone. That I haven't really picked up since that event is clear to everyone, including me, and that alone is a tad concerning.

The only precursor I can identify for last week's hijinx, 20 minutes of low level physio. And when I say low level I mean a couple of toe points and legs lifts. I did my final assessment which pretty much just confirmed my permanent status of completely knackered. But that's it.  But exertion, in any form, seems to be a trigger for my bradycardia. Every time within 30-40 minutes. Garden for 10 mins, bradycardia. Vacuum the house, bradycardia. A couple of pathetic toe points and leg lifts, bradycardia. I'm sure someone told me exercising was supposed to increase your heart rate. Even going out for coffee with Mr Grumpy and walking around for 10 minutes left me with a weak and thready pulse that went blah........blah........blahhhh. Usually it'll pass within an hour or so, but last week it was a few hours. And since then shorter periods, but more frequently. Fun times.

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A quick look at the research and the treatment options for bradycardia are pretty limited. The top three choices are: 1) Treat the underlying cause. Bwahahaha. After years of extensive testing they still can't pinpoint the cause of my symptoms. 2) Stop all medications that can cause bradycardia. Done. No more metoprolol for me. Which of course means rebound migraines and shakes. But still the bradycardia persists. 3) A pacemaker. This option has come up in past discussions with my cardiologist but it is more of a last resort solution as it can't be undone. Do I want to go down that route? I'm still unsure. Although if what happened last week were to happen again I think I would do it. Plus, peace of mind for both me and the family would be good. Yet more fun discussions to have with my cardio.

So on that note and because I am absolutely knackered again.

Cheers
The elite athlete Michelle :)

11 tips for talking to children about your illness.

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To talk to your kids about your illness, or to not talk to your kids about your illness? This is the question that faces every parent living with chronic illness. Do you tell them? If you do, what do you tell them? Is it better to shield them? Is it better to ply them with chocolate and give them a new Xbox game and pretend this question never came up? Or alternately, ply yourself with chocolate and hide in your bedroom watching repeats of The Walking Dead on your laptop, and pretending that the question never came up?

The reality is that for the most part your kids, no matter how old, already know something isn't right. And in all likelihood they will be creating all sorts of scary scenarios in their head. Kids will fill in the blanks if you don't. And often the filler they create is negative. It's one of those times a kids imagination and creativity can be quite unhelpful. Just because you aren't discussing your illness, doesn't mean they aren't still thinking and worrying about what is going on.

My kids were young when I first became ill. My youngest was 8 and my eldest 11. It was a hard and scary time. I had no idea what was wrong initially. Dealing with the stress of the unknown and my own over-active imagination was consuming most of my waking moments. I thought I was doing a good job of protecting them from my worries and my failing health. What I didn't realise is that kids are always watching and are way more in tune to what is happening around them, than we ever give them credit. Saying "mum's just a bit unwell", and generally minimising things, really wasn't working. But in my own distress, I was simply oblivious to that fact.

Problem was, that whilst I was doing this, my kids had convinced themselves I was dying. Worst of all they didn't want to share their fears with me for fear of stressing me out. Instead, they were quietly worrying themselves sick that I would soon be dead.

When they finally told me, it ripped my heart out. Here was I, thinking that I had protected them from what was going on. But instead they had born a huge burden alone for a long time. If I have ever truly felt like the world's worst mum, it was in that instant. From that moment on I decided to talk openly with my kids about my health. Well okay, that moment may have been preceded by much in the way of tears and gut-wrenching guilt, but once that passed I decided that I wouldn't hide things from my kids again.

Now admittedly, there are aspect of this illness that you can't hide. Passing out for example is pretty hard to cover up. But there is a huge difference between your children being witness to the event and actually discussing what happens and why. If not dealt with, the uncertainty and the unknown feed fear. When it comes down to it, it really is true that knowledge is power.

So what are my main tips?

1.  Be prepared: Working out how to explain your illness and what it means, before the discussion occurs will help greatly. For a complex disorder like Dysautonomia it can be hard to explain at the best of times. If stumped, ask fellow patients how they explain their disorder. There is bound to be an explanation you can use for your situation.

2.  Tailor the information to the age and maturity of your child: The information a child needs, and can process, at 8 is very different to 15 (as my youngest is now). But whatever their age, or level of maturity, there are ways to talk to them. Early on we basically told my kids that I had a heart problem, but the doctors were trying to work out how to make me better. Over the years this has evolved as they have matured. Now at 15 and 18, they want more detail. They know about the autonomic system and the problems I face. They know about my meds and the types of doctors I see and why. We are now open about the whole situation. But it is a process. It is easy to discuss these things now as we have been discussing them in some form or another for 7 years. Each conversation building on the previous ones.

3.  Answer the questions they ask: don't overwhelm them with details unless they ask for them. Take it step by step. Some kids only want simple answers. Others are a sucker for detail. You don't need to overwhelm them with bucket loads of technical information, unless they ask. It can be a weird mindset as a parent, but you have to step back and let them lead the conversation.

4.  Be honest: My two asked me to promise to tell them if something serious was happening. My first reaction as a mum was to protect them. But in agreeing, I gave them a sense of reassurance. They no longer had to lay awake at night worrying if I was hiding bad news from them. If we weren't discussing it, it clearly wasn't an issue.

5.  Conversations can happen anywhere: if there are big issues to discuss, a specific family meeting can be great. But I've have found that most conversations begin when you least expect them. Questions are asked whilst you're making tea, whilst driving, at the checkout, waiting for a movie to start, late at night (mine are big on this, and many discussions have happened at 11pm or later). The important thing is to take the opportunity you are given whenever it happens, and go with it. The timing may be weird or inconvenient, but it is the time your child is finally comfortable and ready to discuss difficult issues. You simply have to go with the flow.

6.  Empower them with solutions: teach your kids what to do if something happens eg what to do if you pass out. This can be a scary time, but if kids know what to do it can alleviate much of the stress for them. Teach them them how to dial 000, 911,999 or whatever the emergency number in your country. Give them a contact person they can trust to ring in an emergency or if they are scared. Simply knowing to bring you water, or a salty snack when you are starting to fade gives them a sense of control.

7.  Include them in the process: Sit down and work out a plan with them. Eg if mum is on the floor and she wont wake up ring 000. If mum wakes up, bring her water, salty snacks, a blanket, keep the dogs off her (a necessity in our house).

8.  Empower them with knowledge: When an illness is chronic there are symptoms which are simply part of your day-to-day. My kids are pretty attuned to what is normal for me now. They know the cues for when I need to sit or lie down and it is all handled with minimal fuss. If I'm cooking tea and getting pale or starting to sway, they grab me a chair and a drink straight away. It's normal. It also means that they can detect when something more serious is going on (eg when I collapsed  last week). When every day is punctuated with symptoms that can be scary and confronting (something I really notice when we have visitors who aren't used to my health issues) knowing what is white noise and what is time for action relieves a lot of tension.

9.  Lead by example: learning how to deal with your own stress and choosing how to live your life, part of which is illness, is vital. Kids learn by example, and as parents we are still the main influence on their lives. If we are consumed by illness and not managing our stress they will also be consumed by our illness and stressed. As mother's we are often taught to put ourselves last. But the reality is that in taking care of ourselves, we are in turn taking care of them. If our kids see us managing in healthy ways they will learn these skills simply by being with us.

10.  Utilise support services for kids: If you are worried that your child isn't telling you what they are feeling or you don't feel confident to discuss these issues there are services available. In Australia, Kids Helpline 1800 55 1800, is a fantastic free telephone and web counselling service for children. Similar services exist in most Western countries. You can provide your children with information about these services and let them ring at need. Family counselling can also be valuable if you want some professional direction and support as to how to discuss these issues. Letting your child's school know about the situation can also be useful. For example, they can provide counselling if needed, or simply alert you to changes in your child's behaviour. We met with our children's teachers and let them know what was going on. Whilst no major issues arose, the teachers appreciated being told and it definitely gave me some peace of mind.

11.  Kids are resilient: This is the final, and in many ways, the most important point. We often underestimate how resilient our kids are. But the one thing I have learnt over the last 7 years is that kids can show an incredible amount of strength and empathy. They surprise me everyday. If they feel loved and supported it is possible to make it through. We can't always protect them from the stressors of life, but we can provide them with the tools to manage them as best as possible.

We have had many ups and downs over the last few years. I wont say that at times it hasn't been stressful or tough. They still worry. I still make mistakes. And things go pear-shaped at times. But overall we are maintaining a reasonable balance in difficult circumstances. Being open with our children has been confronting and hard at times. But that's not unlike many of the issues we have to discuss with our kids as parents. But we can do it. And our children will be the better for it.

Cheers

Michelle :)

Okay I couldn't think of a song about talking I liked, but I do like Talking Heads and my kids love this song and it's parody Psycho Chicken.

Fear and loathing in Las Loungeroom.

(Loving my new The Walking Dead mug. Suits my state of mind perfectly.)

I've had a bit on an unintentional blogging break of late. My mojo has been somewhat absent and my health not exactly stellar. Sometimes it's difficult to keep hold of that happy place no matter how much you want to or how hard you try. No amount of positive thinking works and you end up just beating yourself up for somehow doing happy wrong.

I've noticed there has been a move in some corners of the ether to stop discussing the negative emotional aspects of illness and in my state of funk, it's really rubbed me the wrong way. I've found myself moving further away from various groups which seem more intent on providing more in the way of inspiration-at-all-costs, rather than a safe place to vent and seek support or treatment information.

I'm all for inspiration, but not at the expense of silencing the patient voice. Illness sucks. At times it is hard to find anything positive to cling to. It is scary. It is challenging. It makes you want to cry uncle and hide sobbing in the corner. There is nothing wrong with these feelings. But there is something wrong with stifling those who voice those feelings or judging those who are in those dark places.

I understand not wanting to dwell in those places. That is not healthy. But ignoring them or pretending they don't exist is even more detrimental. Already we judge ourselves more harshly than anyone else possibly could. But to hear that we are somehow doing illness wrong is another level of guilt to bear.

Admitting these emotions is already fraught with stigma. Inspiration porn tells us that we should all be fighting the good fight. That we should face the world with a smile and a Can-Do attitude. That the sun will come out tomorrow. Turn that frown upside down. All you need is a positive attitude. We are beaten over the head with the permanently perky group-think that has been popularised by pop-psychology and smiling, big-haired, over-tanned pseudo-celebrities on the covers of shelf after shelf of self-help books.

Say it's tough and you might as well have said, "on my weekends I enjoy sacrificing small furry kittens to Beelzebub". That is where the problem lies. Not in the patients experiencing real emotions from living in a prolonged stressful situation. It takes courage to say it's not okay in the face of the overwhelming positive brigade.

Sometimes what you need is one safe place to say it's not okay. That you are scared. That it is all getting too hard. This is where a true support group can come to the fore. A healthy support group is a reflection of the different aspects of illness, part inspiration, part support, part venting, part information etc. We need a place to voice those thoughts and feelings free of judgement. To simply hear that someone else understands and has been there. We don't need solutions. We don't need to be told that we should stop being so negative. That we shouldn't share. That we should always try to find the positive. Some days you simply can't, AND THAT'S OKAY. We can support one another without forcing our own beliefs on others. Without expecting others to be in the exact same headspace as we are.

In psychology, there is a concept known as the Theory of Mind. In a nutshell, this theory suggests that we can attribute beliefs, emotions, states of mind etc to ourselves and others, and understand that other people may have beliefs, emotions and needs that are different to our own. It is this theory that allows us to have empathy for others. It means that even though others may be in a different emotional place to ourselves, we can still provide support and care for them. This theory or its lack can make or break a support group.

We can support one another with a long message or even a simple emoticon, a heart or a sending of hugs. Because sometimes that is all that is needed, especially when your heart and mind are already cluttered and overwhelmed. That lets another patient know they are not alone. It lets them know they can vent and then, that they can breathe.

Positivity has its place. I am a positive person by nature. But it cannot be sustained 24/7 and forcing that is an added burden patients don't need. We have a range of emotions for a reason and each has their place. We are all in different places in this illness journey and we can't expect that everyone will be as sanguine as we are in a particular moment.

This past week I felt fear. Something I haven't experienced in a long time. My bradycardia was the worst it's been in....well, to be honest, it was probably the worst it has ever been. I experienced all the scary thoughts. I realised there was a chance that my heart could stop. That my kids could come home to find me. I was scared to be alone. Later that night when my heart rate had stabilised somewhat I realised I was over it. Really over it. I've been sick a long time. I've had enough.

There is no shame in airing those thoughts. They were a natural response to a damn scary situation. They are thoughts that I know others have had. Airing them doesn't scare others. Or if it does it opens up an opportunity for more discussion and support. It allows others who have been sick for a longer time to share their experience. It means that should other patients have those thoughts at some point they know they are not alone. If they see support on a thread from other patients they learn ways to deal with the messy emotions that crop up with living with a complex chronic illness. They also see that we make it through. That no matter how tough it gets, there is a point where it gets better again. That today I am planning art projects and laughing at YouTube videos. The worry of last week is still there, but it is balanced against the good and put in it's place. Today I can laugh and smile again. I made it through. Today's emotion losses much of it's salience if it's not seen alongside the darkness of last week.

Living with illness is a frenetic ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don't exist or minimising another's experience does a disservice to ourselves and to our fellow patients.

Shame and fear thrive in silence. And that's one burden we can change.

Michelle

I should add I am a strong supporter of seeking professional help for dealing with this aspect of chronic illness. For some, psychologists or counsellors, for others clergy, or professional support lines. Support groups fill a very valuable place in dealing with illness, but sometimes more is needed. There is no shame in seeking help for the emotional aspects of dealing with illness, just as you would seek out a cardiologist to help with heart rate issues or a neurologist for small fibre neuropathy, a psychologist can help with the emotional roller-coaster that is chronic illness.

Love this cover of Tears for Fears, Mad World. Plus it was featured in Donnie Darko one of my all-time favourite movies.

40 is the new whatever.

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Today is the last day of my 30's. Exciting, no? I'm sure I'm excited. Really I am. Well people keep telling me that I should be excited, or depressed, or that today should be seen as a last hurrah. But I seem to have a bad case of the meh.

40 seemed so old when I was a kid. Now it just seems like, well, I'm not sure. It just is. Yet another day on the calendar. Another year done and dusted. I just don't get the hype. I don't feel older. Well my body does, but in my mind I'm still 20, or 12 (fart jokes still crack me up). Apparently, I'm supposed to be hitting my sexual prime. Okay, I can't even type that with a straight face. And if all my years of Oprah viewing taught me anything it was that I am now supposed to have some epiphany and come into my own as a woman. Bwahahahahaha.

Don't get me wrong. I'm not upset or depressed either. And it is better than the alternative. It just doesn't feel like that big a deal in the scheme of things.

The lack of care factor could be partially due to the fact that the last week or so has been more a hello 80 than hello 40 moment.

Last week I was officially confirmed as disabled. Bonus. Yesterday was spent checking out tilting wheelchairs named Karma (obviously I kicked A LOT of kittens in a previous life if that's my karma). YAY. This morning I was mocked by my dosette box and granny compression stockings. And to top it all off I found a new breast lump. Woo Hoo! Celebrate good times. Come On!

Though in truth I've been pretty meh about the whole 40 issue for quite a while. I don't like fuss. I particularly don't like fuss about me. And these days, well fuss is just plain exhausting.

Part of me would like to party like it's 1999. In 1999 I was throwing back rocket fuel shooters in a dodgy karaoke bar in Middle-of-Nowhere, Vietnam. Surrounded by drunk Asian businessmen whilst singing a fabulous, if I do say so myself, version of Fame. Now those were good times.

In reality I'd be happy with a nice meal, chooks and a goat. Yep chooks and a goat. Don't tell me I don't know how to party. Though now we are moving my chook and goat plan has gone on the back burner till we get to the new house at the end of the year.

My 30's have made me re-evaluate what's important. Not out of any deliberate attempt on my behalf to find myself or any other such psycho-babble. But when life hits you upside the head and throws you flailing into the abyss you are forced to really examine all your beliefs and what makes life worthwhile. And frankly arbitrary time measurements and socially expected celebrations aren't up there for me. Good friends, the love of your family and learning that happiness is a gift you can give yourself are where it's at for me.

So goodbye 30, hello 40. Or as it really feels, hello another day of breathing with a potential for macarons.

Cheers
Michelle :)

If you do want to celebrate for me, give out 40 smiles tomorrow. Give them to family, friends or strangers. Or give them to yourself. You just might make someone's day, or even your own. xx

Because I am a child of the 80's and I really can't get excited about tomorrow.

Confirmation of Disability

My fun world of denial hit a snag this week. A big slap-up-side-the-head, marching band, Vegas lights and feather clad showgirls, snag. You see there's this weird little lie I've been telling myself. Although I've been sick for 7 years, although I use shower chairs, a walking stick and on occasion bring out he big guns in the form of Bernice, my wheelchair, and her new, much comfier, replacement Vera to go to a shopping centre or comedy festival, I have somehow managed to overlook the fact that I may be disabled.

You see denial is amazing. It's up there with fingers in my ears, closing my eyes, and saying “I can't hear you. I can't hear you”. Although at some level I knew that I was actually, shall we say, less-functional, than before 2006 and even less functional again in the last year. Despite the fact I have difficulty with my stairs, that I can't stand for long, drop things, walk with either a catch-my-toes shuffle or wide uncoordinated gait that would do a drunken sailor proud (my body likes to mix it up) I have managed to compartmentalise, deny, or at least use a meh attitude to get by.

I have managed to make it this long without the word “disabled” being written in my file. Not that I necessarily have a problem with the word or the concept. It's not that I even object to it being applied to me. Well at least not in my logical, practical moments. But, and because I am a long-term resident of Crazytown, part of me said if it wasn't written in my file, then it wasn't really true. I've said it before and I'll say it again, I should be studied.

As of two days ago it all became fact. Unequivocal, signed off by a doctor, fact. Now if I was a wearer of big girl undies or had eaten a can of Harden up, Princess for breakfast then I would probably be able to just see it as another point in the road that I had to cross. I'd recognise that the piece of paper currently burning a hole in my handbag will allow me access to mobility aides and other help that I would otherwise not be able to afford. I'd be all matter of fact, practical, glass half full, blah, blah, blah. Unfortunately I am not that girl, and am currently in a wee bit of a funk about the whole situation.

Logic is not my friend in this matter although I am sure that at some point that will kick in, but hissy fits, weeping into cornflakes, pouting and the consumption of large amounts of baked goods must occur, before that point is reached.

The OT who I have been seeing has been using gentle encouragement and that “come on now Michelle, time to put those big girl undies on” look to get me to this point. In truth she has gotten me further in the last few weeks than anyone else has in the last 7 years which makes her a bit of a rockstar OT. She has organised my paperwork, had me trying out wheelchairs and basically giving me a reality check, for which I both love and want to stick my tongue out at her. Between her and my physio it has been a hard lesson to digest that I am worse than I had allowed myself to believe. In my mind I was managing pretty well, it was only after assessment that I realised that my idea of managing well, made me the illness equivalent of one of those deluded individuals who firmly believe they are the next American Idol, but are completely unaware that they are tone deaf and have the rhythm of a brick.

So I sat in my GP's office on Monday and handed her the sheets entitled Confirmation of Disability and Disabled Parking Permit and watched her sign away my delusions of still being an able-bodied member of society. Again I was subjected to another example of how clear it is to others, even those who see me sporadically, like my GP.

Now that it's done my family have come out to say “about time, dumbarse”, (okay not everyone one added the “dumbarse” part, but the tone left little doubt that it was implied). It seems I was the only one left who had delusions of my ableness. My ideas that “others need it more”, or “others are worse than me”, was apparently total malarky. It's amazing how completely blind you can be to your own situation. How you can tell yourself lies and believe them completely. How the picture of me I constructed in my head was more fairytale than reality. Denial is a very warm and enticing place. I was quite happy living there.

So I sit here in the hospital sucking down my saline and digesting my new existence. I'm still the exact same person I was Monday morning before the forms were signed. I'm trying to focus on the access it will give me more than the title. As it is I have at least 18mths to adjust to the whole idea before I even have a chance at a newfangled wheelchair. As my OT pointed out (placated me), if I have a miraculous recovery in that time, I can always say no to my new wheels.

It's time to put on my practical hat and be all mature and grown up. But part of me is tempted to just get up quickly and walk at a regular pace from the recliner chair I am sitting in, to the loo round the corner without my cane, just to prove them wrong. Taking a walk on the wild side, baby! It may all end in tears, but damn it would feel good to give it a go.

I'll grow up tomorrow. Promise.

Cheers

Michelle :)

When I grow up – Garbage