Momentum

I've been struggling lately. Not so much with the physical side of being ill. The day-to-day practicalities hold no mystery for me. Most of it is simply white noise now. I know I'm getting worse and as weird as it sounds, I'm pretty meh about that side of things. My recent tests just confirmed what I have known in my heart for quite a while. It's a weird place to be. I'm not happy that I'm getting worse. But I am strangely content to have it made concrete. Now, I don't have to think about it. I don't have to sit and wonder. I can check it off my list and move on, till the next time. But the overall emotional/spiritual/psychological toll is exhausting.

I can't even pinpoint what it is that is so exhausting. It's not like there has been a specific instance that stands out. It's more like the sea washing over a rock. Slowly, wave by wave, the rock is eaten away. You can't even detect the individual bites with the naked eye. But all of a sudden where there was once a great rock there is now naught but a pebble. Chronic illness is like the sea, and my reserves are very much that pebble. There is no real respite. Respite, if you get it, comes in the form of a less symptomatic day, rather than a full day of freedom. You get drawn into a cycle where your entire existence begins to revolve around illness. The search for answers, cures, meaning. You suddenly look around, and you, and your world, are defined by that which you so despise, and you don't even know how it happened.

When you say you are meh about the physical side of things people tend to bombard you with the "but you can't give up line". Mistaking acceptance for defeat. The reality is far from it. I still do what I have to do to manage both Bob, and now, my gastric system. I take my pills, I see my doctors, I take the tests, and do the research. But I am cognisant of the fact that there are aspects that I cannot change no matter how hard I try. And part of the challenge of living with a chronic illness is to pick your battles when you have limited resources. It's about finding your priorities. And deciding what you want for your life. What those battles may look like will be different for every person. But for me I know there are things you can change and things you can't, and spending a life focused on the can't side of the ledger is slowly crushing me.

I have been fighting the good fight for nearly six years. I have a pretty good handle on where my health is presently and where it is going. Early on, focusing on my health at every opportunity served a purpose. It gained me access to a diagnosis and a doctor who understood my condition. It helped me to understand what was happening to my body and options for treatment. It helped me to find a community of people who were dealing with the same illness and provided me with a support I so desperately needed. But as time goes on needs change. Focusing on my illness every second of every day is no longer of benefit. In fact it is problematic. Practicalities aside, such focus is a thief. It steals all your time until there is no room left for life. It tells you lies and makes you believe there is nothing of you but your illness. It leaves you beyond exhausted. And I can't maintain that level of intensity any more.

My plan for this year is to find my balance once more. I am having a sabbatical, if you will, from my sick person job. I have worked long and hard at that job, 24hrs a day, 7 days a week, 52 weeks a year, for almost 6 years. I think I'm well and truly due for some long service leave. I am going to reclaim me. Because the reality is that if I don't, I'm going to burn out. The reality is that if I don't make a concerted effort to reclaim me, I'm going to waste what little energy I have. Without effort I will lose the battle for me to illness. Not because I didn't fight hard enough, but because I surrendered my life to something that doesn't even acknowledge, let alone give a crap, about the fight.

It wont be easy. Balance is hard at the best of times. When you are living with chronic illness it can can be damn near impossible. The reality is your health takes up the majority of your life. Whether it is simply the living with symptoms that require daily management, or dealing with a medical system not set up for long term or complex illness. Even when you make the decision to change, obstacles are thrown at you so fast and so frequently, sometimes all you can see are the tracer rounds. But that doesn't mean we should stop trying. It doesn't mean we should limit ourselves. Because the reality is that it is we who limit ourselves, not our illnesses.

So,

I'm going to believe there is more good than bad in the world.
I'm not going to read more journal articles.
I'm not going to surf more medical webpages.
I'm not going to spend hours on forums discussing my health.
I'm not going to think about all the things that I can't do.
I'm not going to think about all the doom and gloom that my doctors send my way.
I'm not going to play into the sick role any more.
Because I can't.
Because for me it's not healthy.
Because for me I want to be something other than the sick girl and all that entails.
I'm choosing to swim rather than drown under the weight of it all.

That's not to say that at times I wont tread those paths. But it'll be on the periphery, and it'll be for short bursts only. Because that's what balance is about. It's not about denying my illness. It's not about giving up. As trite as it sounds, it's about finding me again. It's about making a deliberate effort to find those other aspects of life that give it meaning and bring you happiness. There will be times where I'll succeed, and no doubt times where I will spectacularly fail. But I'm still going to try. Because that's all I can do.

Michelle :)

My dear friend, and fellow Dave Grohl groupie, Autumn, put up a video today that seems so appropriate, so I'm sharing it here.

The Perfect Bob Christmas Card

(©www.angelapascale.com)

There wasn't going to be another pre-Christmas post but when this popped up on my FB page I couldn't not share. Great work by talented illustrator, and fellow Bobette, Angela Pascale. Check out her blog, web page, or on FB. Thanks again for the Christmas chuckle Angela. :)

Merry Christmas everyone. :)

Oh and one for those of us who are organisationally challenged.

Christmas Cake in a Hurry over at The Sit Down Cook

Merry Crafty Christmas

Well it's that time of year again. Time to deck the halls and all that jazz. Not that we have halls in our weirdly set out home. I'll deck one of my three staircases, or alcovey bits. Whatever. As long as my home looks like Christmas threw up on it I'll be pretty happy.

In honour of my crafty plan to pretend I don't have a chronic illness (some use a dissociative fugue, me, I'm trying the hot glue gun of bedazzling possibilities), I have injected a dose of the homemade to our Christmas decorations this year. Mr Grumpy is stoked of course. Or at least that's what I think his resigned head shaking was trying to convey. It is amazing what you can do with a gum tree branch, some spray paint, glitter, some bamboo, greeting cards, a hot glue gun, and a dose of the crazies/fumes from overheated glue. Take that Martha!

I do hope everyone has a fabulous day filled with love, laughter and ham, glorious, glorious Christmas ham. My mouth is already salivating at the promise of that pink salty nirvana. No doubt I will once again spend my days chasing the porcine dragon with wilful abandon until there is naught but a sad stripped white bone remaining, or a ham coma ensues. There will be other culinary delights of course, but none truly compare to the Babe version of China white, wrapped lovingly in its vinegar soaked ham bag. Oh Christmas, why must you come but once a year?

On that note of insanity I bid you all a Merry Christmas and a fantastic New Year, dear readers. Thank you for all your support this past year. This little blog has grown far beyond my expectations over the past year and it's all down to you, my fantastic, gorgeous, rocking readers. 

Big hugs and big love to you all.

Michelle :)

PS. Don't forget to head on over
to The Sit Down Cook
for some tasty, homemade spelt pasta.

And a little treat for those who like a touch of the macabre with their Christmas cheer.

Kiddy ER visits, do not a jolly season make.

Well another fun night in an ER. What would the festive season be without sitting next to a guy who's chopped his finger off, an old guy with urinary retention, and an old lady who kept telling the ward she needed to wee at every opportunity. 

Wasn't me for a change. Mind you I could have quite easily requested my own trolley and IV. Actually after this past few weeks a medically induced coma for a couple of weeks wouldn't go astray. I'm pretty sure even Mr Grumpy would go one. I wonder if you can get some sort of couples spa coma package? 

No, this time it was my youngest. 

Watching your 13-year-old child sobbing with excruciating chest pain is not fun. Trying to stop the panic you're feeling, from showing on your face, is damn hard. But you're Mum, and according to the brochure, that's what mum's do. So you suck it back down. Put on your calm face. Tell jokes, and rub foreheads. You exude calm and peace till the cows come home, and then some.

Arghhhhhhhhhhh.......

So off to the ER we went. Singing our own special Christmas tunes of, "you'll be fine", "almost there", "the doctors will sort you out", "try to keep breathing". Whilst simultaneously, the tune, of "Fuck, fuck, fuck, fuck, fuck" played over an over in my mind.

Big shout out to the lovely and friendly ER staff. Makes a big difference in the whole proceedings. After all the waiting and the panicking, it turns out that it is pleurisy (an inflammation between the lining of the lungs and the ribs). Wasn't my first hypothesis, or second, or even 28th. Who get's pleurisy these days? Apparently "more people than you think" according to our Dr Carl. Poor kid. It's not like he hasn't had enough of a rough trot healthwise over the past year. But given the options we'll take pleurisy, and we'll like it.

It was educational for him though. especially listening through the flimsy curtain to the nurse explaining catheterisation to the old guy in the next bed. 'Lidocaine', 'lubricant' and 'penis' are now indelibly inked into his shocked kiddy brain. The look on his face was priceless and it definitely took his mind off his own troubles. Luckily, we made it out of there before old 'Stan' had the actually procedure. 

His main concern was that he was going to miss out on fishing today. Because that's what 13-year-old boys are concerned about. Health shmelth. Don't get between a boy and his fishing rod. He wasn't too happy when the good Dr Carl ruled it out. So now to stealthily find a fishing place locally, that we can take him to when the inflammation settles.

So after 4hrs of tests, worry and a few hundred new grey hairs, we got to drag our exhausted family home. I don't think my pillow has ever looked so good.

Today he's lying on the couch with a heat pad, reindeer antlers, nachos, and his ipod. I'll take that as a good sign. To see him so calm now, it makes last night seem like a bad dream. 

Damn, this motherhood gig is exhausting. 

Finger's crossed there'll be no more ER or doctor visits between now and Christmas, because frankly I'm over it. All of it. Time for a break please.

A totally exhausted and probably incoherent Mum.

Bondage for beginners and other fun things you learn from your friendly neighbourhood Neurologist.

Lapsed blogger due to limited internet thanks to a dead router, and extra crappy health. May be intermittent at best over the next few weeks.

Once upon a time, in a land far far away, I was healthy. Once upon a time I got my fill of medicine watching ER and perving/drooling over Dr Kovac, with his hot Croatian accent. Good times. Fun times. Times to which I wish I could return. But alas, that time is passed and I now have the joy of being felt up by neurologists with whom I used to work.

(Pretty accurate depiction of autonomic testing)

Case in point this past Thursday. Back in June Uberneuro had suggested I have the autonomic testing battery yet again to see how things are progressing. Unfortunately, here in Melbourne, there is only one hospital, one clinic, and one doctor that conducts the tests. This just so happens to be a hospital where I used to locum, in a clinic where I also did a six month placement whilst training, with a neurologist whose patients I used to assess. That's not confronting at all. No. Not at all. No way, no how. Nope. *sigh* Just pass the Tequila. Now where's that bloody worm?

Where was I?

My own work/pride/need a big can of Harden Up Princess, issues aside, the autonomic battery is about as fun as an anal probe conducted by an meth addled lemur on a unicycle.

It begins 48hrs prior to even getting to the hospital when you must cease all medications. You know those ones that keep you standing, stop you vomiting, or crapping or speaking such incomprehensible garble, you need your own personal Rosetta Stone to translate. Yep, those ones. Not even a piddly little antihistamine, when you're smack bang in the middle of the pollen apocalypse. You just know it's all going to end in tears.

Then on the morning, because morning is the worst time of day for anyone with Bob, and the obvious time to do testing, you can't even cry into your Cornflakes, because you are fasting. No water, no salt, no food. And the ever fickle Melbourne decides to finally find Summer after needing the fireplace a few days before, and turns on a 32C day. If I hadn't been so completely dehydrated I would have cried a tear or two whilst I wallowed in self pity.

Poor L-Plater had to drive me. To say he was stoked at the prospect of driving his babbling, brain fogged, staggering mother to her appointment, and then to sit around in the hospital for a couple of hours, may be an understatement. Actually, I think his favourite part was when the sleazy cafe guy asked if I was his sister. The look on his horrified teenage face made the whole day worth it.

You do have to love neurologist humour. It's one step above Dad humour. You lie there thinking "Dear lord, make it stop, please make it stop". Trapped in a never ending comedy hell, where even feigning death or passing out doesn't end the torment. Given that autonomic testing involves been strapped down to a table, the logical place to go was bondage, where questions such as whether a dominatrix takes into account the effects of passive bondage on her clients' autonomic nervous systems? are posited. Yes, this is how I spent the couple of hours of testing. It's a unique approach to relaxing your patients, I'll give him that.

In between these educational S&M discussions, I learnt about living in New York, that the machine used to measure my bp and hr was named Colin and didn't like being called Colleen or Collette, that the giraffe is an abomination in the eyes of intelligent design, and the low down on who was working where these days.

I also did tests like the Q-sart (sweat test), where they put gel on your foot, leg and arm and hook you up to a battery for some fun zapping. Not overly painful, but rather annoying. My results were odd and he admitted he may never have an explanation for why they are the way they are. There were others like the good old deep breathing test where you follow a green light go up and down in 5 sec intervals, and get to feel light headed and giddy.

My favourite would have to be the Valsalva test which I apparently failed so "spectacularly" I didn't even have to do it a second time. YAY Me!  For the uninitiated the Valsalva test involves blowing into a bugle thingy (yes I'm all on top of the high tech medical lingo) and maintain a pressure of 40, for 15 seconds. Pisser is that there is a leak in the device so you have to keep blowing. Bring on that anal probing lemur, because I'd rather be probed by an odd looking pigmy primate, than do the Valsalva again. Having your pulse pressure drop to a consistent zero is not all that it's cracked up to be. Who'd have thunk it? I've had low pulse pressure, 5 or 7, before, but never a big fat zero, and that my friends is mightily unpleasant. Two days later I still have chest and head pain.

So now I am forever banned from blowing up balloons, playing wind instruments, singing, and excessive laughing. Not to mention no more grunting and straining on the loo. Personally, I'm pissed about the no more 80s power ballads belted out in the car to embarrass my children and their friends. And no excessive laughing? Sheesh. What's a girl to do when her dog is surprised by his own fart? Thanks very much Dr Killjoy.

The tilt table test (is this no.4?) was equally fun, and ended early in the piece as he had all the info he needed and he couldn't see the point in torturing me any longer. He did enjoy my descriptors during the process, "blech" and "shite" are now officially in my file. All that university learning has obviously paid off. So after all that, apparently my body doesn't like being vertical. Now there's a shocker. I did have to laugh that I now meet the criteria for POTS. Although, there was the caveat "but it's not quite that simple". Like the Danoz Direct ads I have the "but wait there's more" version of POTS. YAY!  Well today at least. The way my symptoms change who knows what it'll be next week.  Tis nice to have a type for once, even if it is of the iffy variety and completely transient. When I asked him why I've gone from bradycardic to tachycardic he just joked that my body was "trying something new". That there is some fine doctoring, my friends.

The last part was to close your eyes and say when you felt the table was returned to the horizontal, which I passed with flying colours. Now to work out how I can use that in my every day life. You know the whole, "use your strengths to compensate for your weaknesses" theory. Human spirit level perhaps? I did have to laugh when he mentioned that one of his well endowed female patients told him she cheated, because she could feel when her boobs ended up in her armpits. Not that my miniature mammaries can do that. But hey. That really just exemplifies the whole weird and wonderful experience.

I will say he was good at the explanations. He sat down after we'd finished and went through all the graphs and results and explained each of them in detail. He told more bad jokes, plied me with water, let me lay down for a while and gave me a list of suggestions to help, all of which I already do unfortunately. Interestingly, he did say for me I need weight baring and not cardio exercise as I have lost so much muscle mass since August. Apart from the generic effects, cardio is just not going to do anything for my version of Bob.

The only new bit of information was that he thought I'd be a good candidate for monthly intravenous immunoglobulin (IVIG). Of course like most of the options for me, this is damn hard to get in Australia, even if you are fully immunocompromised you struggle to get access. And, yet again, stupidly expensive. C'est la vie. 

So it's all over for another year or two.  After giving him the deed to my house to pay for the privilege of being strapped down, and up, and tortured for a few hours, I managed to get home and fall into coma sleep. Now I have simply to contend with the giant ringworm welts on my body thanks to the ECG and other pads. Thankfully, Dr FB Friends has given me a load of options to help with the painful oozy itching.  (Before anyone asks, there were no hypo-allergenic ones available. Given I had already been 48hrs without meds, fasted and made the trip in, I decided to suck it up and just get it over and done with, rather than repeat the prep process).

So now it's recovery time. Time to live in the Batcave or maybe drag myself out to the couch, catch up on some eps of American Horror Story (please tells me it gets scarier. Because so far its weird, but horror? Not so much), and rest up for a wee while.  Must say a medication holiday does make you truly appreciate what the meds are doing for you. They really are the difference between being able to stand and semi-function and being bed bound. Side-effects be damned, they are here to stay.

Okay I'm off to find a nice corner to pass out in until the exhaustion passes.

Michelle :)

Farewell balloon blowing, singing, laughter and tuba playing, "you're history, no good for me".

You Got The Look

This blog was originally part of the Blog carnival for International Day of People with a Disability, 3rd December 2011, being held over on Carly Findlay's Tune into Radio Carly. The theme is about changing how people think about disability.

One of the issues I find most frustrating is the public perception of what disability is, or should look like. I am one of those people who doesn't look like I'm 'disabled' in the traditional sense. Sure I walk with a cane these days. But nine times out of ten people attribute its use to an acute injury. And most, when told that it is due to a neurological condition, look shocked, embarrassed, and/or horrified.

Most who have read my blog for any time know I have beaten the old "but you don't look sick" line to death. My trusty soap box is only still standing thanks to my clever use of chewing gum, broken paper clips, the insert from an old Wonderbra, and a misspent youth watching MacGyver (I pretty much deserve an honorary mullet at this point). But the truth is I generally don't look sick, well at least not in public. Out in public I am all Heidi Klum's doppleganger. Whilst, I tend to reserve my Linda Blair/Exorcist looks for the comfort of my own home, and my long suffering family.

I do look pasty and tired, but I'm pretty sure most people attribute that to my exciting nocturnal rock star lifestyle. An underlying, progressive neurocardiogenic disorder that is slowly destroying my body, is not usually the first thing that comes to peoples' minds.

This creates problems, and apparently annoys the crap out of some people.

If you saw me on the street, you'd see a hot 38-year-old woman with kickarse thighs. You may even think, what the hell is Supermodel Heidi Klum doing browsing through the Target bargain rack at this time of day? Surely she should be off preparing for the next Victoria's Secret parade? Those angel wings wont work themselves, lady! Don't Supermodel's have a work ethic? (Or maybe not. But it's my blog and really I can be as delusional as I like).

(The resemblance is striking, no?)

What you didn't see prior to that paparazzi moment is the lengthy preparation phase required to transform from 80's horror movie icon, into hot German supermodel. Spontaneity is no longer a word for this aging/broken goddess. Thanks to my health it can be months between trips out to the shops.  In fact, I only recently made it to my local shopping centre after 3mths pretty much housebound. I even managed a massive hour and half out. "Whoa!" I hear you say. "Medicare AND Target? You know how to party, girlfriend". But I digress.

Leaving the house requires a Masters in logistics and planning. I begin my preparation the day before. I shower and sometimes, even get a bit crazy and go all out, and wash my hair the day before. Energy constraints do not often allow for both an outing and personal hygiene on the same day. On the day itself, I rest. Mornings are out as this really is my Linda Blair phase, pasty, no blood pressure, legs that don't want to coordinate, peasoup expulsion. I'm pretty sure my head may do a complete 360, but the hypoperfusion makes recollections a tad sketchy. I chug extra water and salt, pop more meds than my husbands grandmother, and go to the loo about a dozen time. All going well, I make my way to the car. Alas, a last minute call to "Abort the Mission" is not that unusual.

Here is the fun part. Being upright brings on my symptoms. My body loves the horizontal like Tony Abbott loves his Speedos. But is as adverse to the vertical, as old Tony is to, well everything.  So I spend my trip, feet on the dash (to prevent blood pooling), head between my knees, clutching a puke bag 'just in case'. The AC gets turned up on full even in Winter (it's fun having a body thermostat set on 'Sahara') and we drive to the shopping centre trying to ignore the ever increasing hole in the ozone layer that we trialling behind us.

Once there we sit for a while whist my body recovers. Then through the prodigious use of swearing, grunting and helpful husband, or child, I can make my way into the shopping centre. Supermodel looks firmly in place.

When I'm standing looking at the rack of bargain dresses the real work begins. You see I may look all  Ms Klum to you, but the reality is that I am working like there is no tomorrow, to maintain my upright posture. There are prayers to every deity known to man, offers of virgin and kitten sacrifices, and promises of left kidneys and first born sons, if only your legs will hold you up for a few more minutes. That the puke will stay in and your blood pressure will stay stable. That you can manage your slurring words enough that the sale assistant will think you have an exotic accent, and not that you are not a frequenter of crack dens.

And after that hour of fun you stumble your way back to your car looking like the intoxicated celebrity 'It Girl' you wish you were (though I'm not up there with the whole going commando business, I prefer my lady parts fully enclosed in granny undies). If you're lucky you'll make it, or at least have a husband who has perfected the 'I'm holding my wife up so she doesn't face plant, but it really looks like we are just a loving, snuggling couple'. If you're not lucky you get to face plant, inch your way out seat by public seat, or get carried.

Then there is the post party fun to deal with. When your body punishes you for your little outing. The overwhelming exhaustion, the nausea, the shaking, the migraine, the complete body tanty. The resignation that the next day, or sometimes week, is written off for coma sleep as your body tries to repair the damage. Because my outwardly hot supermodel body, is broken, and continues to break.

But all you've seen is that one moment of Supermodel glory. Of course I can't be disabled.

Disability doesn't have a look. You can't necessarily spot it at one hundred paces. The reality is that it has an infinite number of faces. Far more than any of us can imagine. And visible or not, you can cannot judge the cost for one moment of what others take for granted.

In that moment, I may not look sick or disabled in the eyes of others.

But it doesn't change the fact that I am.

Michelle :)

“Be kind, for everyone you meet is fighting a harder battle.” 

-Plato