#HAWMC Day 3: Wordless Wednesday: Balancing Act

Topic: Post a picture that symbolises your condition and your experiences.

Cheers
Michelle :)

#HAWMC Day 2: Helpful Posts

Topic: Share 3-5 of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed.

When you are newly diagnosed or in the diagnostic process it can be easy to end up overwhelmed by the whole process. Initially you are excited and relieved to finally have a diagnosis. Especially with something like Dysautonomia. In the seven years since I first became ill the story has rarely changed.

Most patients are faced with dismissal and sometimes outright contempt by some medicos. It's all in our heads. How dare we ask for a particular test? We found out about a diagnosis on the Internet? What a joke? Dysautonomia is notoriously difficult to diagnose and few doctors can put the pieces together. Often even following diagnosis there we are faced with doctors that have never heard of the condition or are sceptical of the specialist's conclusion.

Patient's are left feeling adrift and confused and the post-diagnostic high starts to lose some of it's gloss. Being ill, often for a protracted period, with a confusing and complex illness can leave a patient feeling overwhelmed. I know it was the case for me. There have been many ups and downs over the last seven years most of which I have documented here on the blog over the last almost-four years. I tired to think of the things that may have been most helpful for me back then and this is the list I came up with.

5 Tips for the Newly Diagnosed Dysautonomia Patient

Sometimes you just want to know that 1) you're not crazy, 2) you're not alone, 3) it can be scary at times, 4) it's okay to say it sucks, and 5) you're going to be okay.

"....Being ill sucks. Being chronically ill sucks donkey balls. It's hard. It's unglamourous. It stops you from doing all you want to do and changes who you are as a person. I am generally a happy person. I find the funny in the most unfunny of circumstances, but there are times where I just want to look up at the sky and say "WTH Universe?" As humans we have a range of emotions for a reason. Permanently perky is just as destructive as permanently pessimistic. In both cases you are stuffing down your emotions. We are all going to have bad days. The important part is to acknowledge what you are feeling, work through it and move on. If you keep stuffing it down you will reach a point where you explode and find yourself hysterically crying and screaming at your husband because he brought the wrong toilet paper. Which is totally disproportionate to the non-issue of the toilet paper (though in my an unnamed wife's defence, some brands are like sand paper and you really don't want sandpaper going anywhere near your tender parts). But you can only stuff down those emotions so long before they begin to eat you up inside.  It sometimes takes more courage to say it's hard, than to put on a false veneer of happiness....." (3rd October 2012)

Dysautonomia: what you need to know in 5 minutes or less.

Explaining what you've been diagnosed with can be difficult when you don't quite understand it yourself. Sometimes it's handy to have a quick guide to refer to and give to people. This guide also includes a list of organisations that specialise in support, research and awareness of autonomic conditions.

".....Like symptoms and causes, long term outcomes vary. Some patients will recover, especially if younger and if their symptoms began after a virus. Some patients, will have a stable but chronic pattern. Some will have a relapsing remitting profile similar to MS. And yet others will progress over time....." (21th october 2012)

My life with Bob: The ravings of one slightly deranged woman in her mid-thirties living with chronic illness - composed over several long months.

This is my first post. I wrote it back before I started the blog. It chronicles a lot of my early experiences from getting sick, to diagnosis, leaving work, and the all the emotional ups and downs that accompanied those early days all in one neat post.

".....For the most part you can be ill in private but every now and then Bob raises his ugly head in public. I dread these moments. When you’re trying not to throw up or pass out in the local ice cream shop the last thing you need is a gaggle of people asking you if you’re ok. Of course I’m not ok! I’m pasty and sweaty, my head is between my legs and my face is an inch away from an old bandaid, a piece of used chewing gum and a decidedly iffy short curly black hair. I’m using every ounce of concentration not to throw up on your shoes so don’t ask me questions or you’ll wear it. I live in a relatively small community and privacy is a rare privilege. Everyone soon knows you as that weird, pasty, angry woman from the ice cream shop who nearly threw up on their shoes...." (19th July 2009)

Waiting for the storm

One of the hardest parts of this illness is it's unpredictable nature. It can leave you always waiting for the next bad patch and leaving little time for appreciating the good times. This post explains a lot of my philosophy on how to make the most of those good times no matter how big or small they are.

"....You take on the role of plate spinner in a bizarre circus troop.  Constant alert, waiting for the first plate to show a sign of the shakes.  Never knowing which  will be the first to fall.  Rushing from spike to spike in a desperate attempt to keep all in a state of equilibrium.  Failing time and time again, no matter how hard you try or how closely you adhere to the rules.   Fear becomes your permanent state, only the degree ever varies...." (11th August 2010)

Acceptance is not giving up.

This is a hard concept for many. It is often a state of mind that doesn't happen for a long time. There are times where you fight 24/7 and there are times where it is okay to sit back and take a breather. There comes a time where illness can rule your every waking thought and when it can be dealt with, put in it's place so you can move on and enjoy the life you have. Living life is just as important as fighting whatever illness you have otherwise you can miss so much that is good in life.

"....Acceptance is a dirty word for many. But I find it quite liberating. It gives me much needed balance, and I am certainly happier for it. It doesn't mean I've given up, in many ways it means the opposite. It means I have chosen to fight for me. And damn it, I'm worth it...." (17th January 2013) 

So there you go that's my Top 5. I'd be interested to know if these are the 5 posts that my regular and long term readers would pick or if there were others that stood out as being really helpful.

Cheers
Michelle :)

#HAWMC Day 1: Why Do I Write?

About a month ago I had a moment of insanity and signed up for another month of 30 blogs in 30 days for Wegohealth's Health Activist Writer's Month Challenge (HAWMC). Somehow I forgot that last year I exhausted myself as my anal, "You can't beat me!" side came to the fore. I'm starting to think that it's a little like the blogging version of childbirth, where despite the pain, being coated in your own bodily fluids and having the whole class of trainee midwives come in to watch your lady bits be sewn up (okay that last bit may have just been my experience) you still go back for a second child thanks to the meth/hormones that is the new baby high. Or in this case, the satisfaction that I did manage to complete so many blog posts in the last challenge despite a rather rough health patch. It would seem that a dissociative fugue is not always my friend.

So hear I am again, ready to embrace my crazy and my tendency towards masochism, only a couple of days and brain cells, late. Luckily Wegohealth have added that you can pop in some old blogs if you've done it before and some Wordless Wednesday's which do give some breathing room this time around.

So first up (and because I am running late) I'm going to link you up to the post I wrote last year that explains why I write this blog and share my experiences both here and on my Facebook page.

".......Blogging about my health in those early days was about rediscovering and taking ownership, of my voice and my experience. When it comes down to it, if you don't write your story no one else will. And there is no one who knows your story as well as you. Being a patient and being ill can be very disempowering. A paternalistic medical system and a body that seems out of control can rob you of your sense of self. Sometimes, it can be down right scary. But every word I wrote in those early days was another step back on the road to reclaiming me. The very act of sharing my voice with the world was equal parts empowering and pee-in-your-pants scary. Some of those thoughts that go through your mind when you are alone in the dark at 3 am, make you feel like a crazy person. But when you share them you suddenly find that there are others out there having the exact same thoughts and they become far less scary. It's then that you realise that you are in fact a rather normal person living a rather abnormal life........." (1st Novemeber 2012)

Full link can be found at: National Health Blog Post Month: It Begins. Why I write About my health.

I do recommend blogging or at least writing as a means of working through so much of what we go through. It helps to clarify what you are thinking and feeling. And it gives you a chance to share your voice whilst reclaiming your experience. Too often others speak for us. Sometimes this is because we are physically or emotionally unable to advocate for ourselves and sometimes because there is still a paternalistic element in society that infantilises the ill, and speaks for, instead of with, us. You don't have to show anyone what you write. But writing can be an amazing cathartic experience and I can't recommend it highly enough.

Cheers
Michelle :)

IV Saline Update: It's happening!!!!!!!!

So much can change in a few days. One minute you're busy hating on the injustices of the medical system, the universe and the idiots who cancelled Firefly after one season (okay, that may have been a while ago but some grudges are worth keeping). And the next you are sitting in the Day Procedures Unit at your local hospital with an IV stuck in your arm sucking down some sweet, sweet saline.

Last Monday I was busy pouting and stamping my feet when I had a phone call from my GP. I could tell from the outset that something was up as she was clearly excited. You see, after much hard work on her behalf, including three months of phone calls and searching, she'd finally organised weekly IV Saline through my local hospital. And not only that. She had also managed to get me back into the Community Rehabilitation Program who are happy to come to my house for physiotherapy and occupational therapy each week on the day after my infusion. That's what I call "Winning!"

Now I was rather excited by this news to say the least. But a part of me was also sceptical as I had no tangible paperwork to prove that it was true, just my GP's phone call. Too often over the last seven years  I have allowed myself to get excited about a potential treatment or appointment only to have it ripped away at the last minute, or end up stuck in a maze of soul destroying red tape and inevitable disappointment. Yet, Tuesday there was a call from the Day Procedures Unit to say they were expecting me Wednesday morning. Could it really be true?

Wednesday morning rocked around 36C and blustery, and I was of course sick as a dog, having travelled into town to see my neurologist the day before. But I wasn't going to let my recalcitrant body get in the way. So I sat there on the loo clutching my puke bag willing my body into submission. I managed to get dressed and organize a taxi and drag my protesting body into the hospital.

Of course in my brain fogged, vomit-suppressing, cheek-clenching state I managed to get the taxi driver to drop me off at the wrong entrance. Which of course meant that I had to walk/stumble uphill in the heat to the next entrance. Thanks to all those people who just stared at me, or whispered to their companions, rather than offering assistance or even asking if I was okay, as I shuffled and weaved my way up the steep driveway with my cane. Go community spirit!

But by 11am I was there in the blessed cool AC of the hospital, filling in the 28 million page form which of course never has enough space for all my meds. Whilst the couple across from me who were apparently there for hearing tests, let their bub scream hysterically in a pusher for 20 minutes, whilst the rest of us clutched our ears and sent death stares in their direction.

And then I was in.

 Sparkly silver shoes and bright red compression stockings are a must for heading to hospital.

I was excited, exhausted, nauseous and desperately in need of toilet break. 

But I wasn't moving till that sucker was stuck in my arm.

They even managed to find me some pretty blue cohesive bandage so no issues with adhesives. There was much merriment that it is also the tape they use on racehorses and that my lovely nurse stole it from another ward. Yep, me, horses and petty larceny, what more could you want.

Hello my pretty.

 The only way to spend 4hrs hooked up to an IV. 

I am keeping the season finale for tomorrow's session so no spoilers please.

2hrs in I was rather excited by my IV. A bp of 120/69 and hr 75 and 

no facial paraesthesia, will do that for you. 

4hrs in I was a tad over sitting in a seat. Amazing how tired you can feel after just sitting around. Plus there was the fact of having to use the share toilet 45 times whilst I was there. People are foul.

But the weird thing was that as much as I was tired and over it, I still felt better than I have in months. When my eldest rocked up at 5pm (with my favourite sushi in hand, he's a good boy) I was ready for a nanna nap, but still whistling a happy tune.

So what was the result?

• The 48hrs post IV I was able to do more than I normally can. My bp stayed relatively stable for the 48hrs something I haven't had for the years. Amazing how much of a difference that makes. Apparently I was also brighter and had colour in my cheeks. 

• By Day 3 it was starting to wain. My bp was starting to do it's usual frantic oscillations but I still felt less of the general malaise I have felt since day one. For those who don't have Dysautonomia, it's kinda like the general crappiness you get when you have the flu, but I'm lucky enough to feel it 24/7 365 days a year. 

• By Day 4 the honeymoon was over and I was pretty much back to my normal. I still tried to push through (or as Mr Grumpy so eloquently put it, I was a "dumbarse"). It wasn't pretty.

• By Day 5 I was a mess and ended up coma sleeping the day away. I am hoping that my crashes will get less with time as this was worse than I've had in a while.

So tomorrow, Wednesday, I head back for another session of IV saline. And Thursday my physio and OT are coming to my house for a session. The plan is two months of weekly infusions followed by rehab the next day to maximise any bonus I get from the saline. All in the hope it can dig me out of the physical hole my body has been digging the past year.

I've never had saline when I wasn't already in crisis so I really had no idea how much of a difference it would make. It's been a pleasant surprise. Using it as a prophylaxis is not the norm here in Australia. It is a first for my specialists, my GP and the physician at the hospital that agreed to let me come in and try. I am hopeful that the combination of weekly saline and rehab will combine to start me on the path to some improvement. I am also hopeful that if I have a good outcome that it may be used as a case to support regular IV saline as an adjunct therapy here in Australia, or at the very least, here in Melbourne.

I am also continuing all my usual treatments (medications, diet, external aides, meditation, etc) so IV saline is not a replacement therapy for me, just another weapon to add to my arsenal.

I'm going to add a caveat here. Regular IV saline is not going to be appropriate for every patient and you should always consult your treating doctor to discuss the specifics of your presentation before making any treatment decisions. There are risks involved with IV saline, such as damage to your veins, clots and infection. Different risks again if you have a Port or PICC line introduced to the mix. However, like every treatment option it comes down to risk-benefit analysis which we all must assess at a personal level. All patients have a responsibility to be as informed as possible about whatever option they choose.

Having said, that I am pretty stoked at the moment and looking forward to my infusion tomorrow. I'll let you know how it goes over time.

Cheers
Michelle :)

Huge shout out to my fabulous GP without whom this wouldn't have happened. I've never had a doctor persevere like that before. Also to the lovely staff at the Day Procedure Unit who couldn't have been nicer and the physician from the unit who took a chance on, what for them, is an out of left field idea.


This song really doesn't have much to do with this post except that it just makes me happy and I love it more every time I watch. Plus, I want to dance like this one day. Maybe I can put that as one of my rehab goals?

Value for money.

(Looking kinda normal at my eldest's deb. Well apart from the hand he's using to desperately hold me up.)

Last week Hayley over at Rellacafa wrote a great post entitled What if Desperation can Transform into Temporary Strength?, and I haven't been able to get it out of my mind. Apart from the fact that she referenced The Walking Dead in the post, which of course made me love her and the post straight away, she raised some really interesting questions that are close to all of us living with chronic illness. How is it that on occasion, we can summon what for those of us in the chronic illness camp, is the equivalent of Herculean strength to make it through certain events, when at other times we struggle to simple get out of bed and make a cuppa?

It's one of those issues that makes it so difficult to convey just how hard it can be to live with our various illnesses. How can we explain to family, friends and strangers that yes we were at a party, dinner, or in Hayley's case a wedding, and seemed relatively normal, and still impress on them just how difficult our lives are. Even after seven years it can still be hard for me to understand at times. Or, to continue the theme, in the words of Merle from The Walking Dead, "I'm a damn mystery to me".

Why is it I was able to push through my son's debutante ball, even manage to do the mother-son dance with him, yet not be able to cook dinner or get out of bed some days?

Part of it is the fluctuating nature of my symptoms. Some days I can simply do more than others. Often there is no clear reason why one day I can clean a bathroom and just be fatigued, and another it will leave me bed bound and crying in my pillow as yet another bout of overwhelming nausea and low bp hits.

Stubbornness is also a great, though not always healthy, motivator in these issues. I am after all, the classic Taurean, stubborn as a bull, or as my mother likes to put it, I am known "to cut off my nose, to spite my face". This of course gets worse the sicker I am. Somehow that always transforms to "you can't beat me!" as I push myself unsuccessfully and vomit in my newly cleaned toilet bowl.

But perhaps the most important part of the equation, is the value I place on the event or activity.

Everything I do has a cost. Drive the hour into town to see my neurologist? That'll cost me at least a morning of vomiting, diarrhoea and low bp with perhaps a migraine thrown in for good measure. Only my need for a review and better pain management make that payment plan acceptable.

Do the grocery shopping? That'll cost me multiple trips to the public loos, nearly vomiting in my trolley, the stress of potentially falling or passing out in public and then usually at the minimum a day of recovery. I've now handed that task over to my eldest son and/or husband as the cost is too high to ensure I get the brand of cheese I like.

Vacuuming and mopping my house? That can land me in bed for a few days or at least being little more than a comatosed blob on the couch. I can live with dirty floors. And lets face it with a house filled with teenage boys and two Great Danes that live in the house, the floor will be in the exact same state 20 minutes later. I may not win any awards from Home Beautiful but I would rather save that energy and be able to sit and talk coherently to my kids about their day or maybe wash my hair so it's more like human hair and less like greasy straw.

When  it comes down to it, there is essentially nothing about these and other mundane daily tasks that make them worth the effort involved.

But there are some activities and events whose value far outweigh the payment demanded.

Last night my best friend came around after dinner. This is one of my hardest times of the day, only trumped by the early morning. Didn't help I'd been up since 7am (for the WEGOhealth Health Activist Awards ceremony, of course the ceremony actually started at 8am Melbourne time, and I'd cocked it up like usual, but that's another post). Normally by the end of any day I am pretty non-functioning. I am indeed the Rusty Hoe by this stage of the night and it doesn't take much for me to fall over the edge. And yet I managed to make it through. And not only make it through, but had a great chat and many many laughs. Even when the laughter ended with the inevitable excruciating vice to the back of my head and greying vision (long time readers may recall that my neurologist told me that I had to avoid laughing as it drops my bp. Only an arsehole disorder would not allow for laughter to be the best medicine) I still kept going. Even today as I sit typing and the muscles on the back of my head are still sore after losing so much blood flow, it was worth it.

You see, catching up with her is always worth any payback and is worth pushing through. Somehow that one fact allows me to summon up every last bit of energy I have. Because for me, it's worth every bit of post-event exhaustion and increased symptoms. And for the short time of the event itself I can push down or at least deal with my symptoms. (Also helps that she's one of the few people I know wont bat an eyelid if I get vague, or grey, or need to lie down. And that she can interpret my incoherent thought processes and sentence structure with ease. Removing that extra level of stress is also a huge factor as to why I can generally make it through a catch up.)

And for me that is the crucial factor. There are very few people that I would value highly enough to sit up talking late into the evening. Equally there are very few events that are worth that amount of effort. And not just the effort of the event itself but the preparation beforehand and also the inevitable crash afterwards.

There is always a price. My son's deb equalled a week's worth of preparation (eg shave my legs one day, wash my hair the next, start increasing my salt and water intake a few days beforehand, minimise doing anything bar the essentials to minimise fatigue, taking extra salt, water and meds on the day), followed by a few weeks of recovery and completely writing off the week immediately after the event. A one night event is transformed into a month long event when chronic illness comes into play. And yet there I was stumbling my way through the mother-son dance and spending 4 hrs in a noisy, hot ballroom without passing out. In comparison, the day-to-day minutia are not so worthy of my efforts.

There is also the factor that these events are one offs or intermittent. The level of effort involved combined with the payback, could never be sustained 24/7, 365 days a year. Cleaning or cooking everyday means a level of activity that in the short term may be achievable, but at a sustained, every single day level, is simply not. I would rather have dirty floors and multiplying dust bunnies and be able to blog, interact with my family or maybe catch up with a friend, than a perfectly clean house. I'd rather save my energy for showering or some days, simply breathing, than having a fully cooked meal. That's why they invented takeaways. And on the days I feel bad, cleaning, cooking or social engagements that are more obligation than enjoyment, are not worth my pushing through, and without that motivation I am simply unable to do them.

Most patients with chronic illness know The Spoon Theory by Christine Miserandino, and it continues to be one of the best explanations about the way I function (or don't function as the case may mostly be) that I've come across. I have a finite amount of energy each day. And once it's gone that's it. Sometimes, I spread it out over the day and sometimes, I use it all in one spectacular moment that I deem worthy. In those moments I can look normal, I may even dance like Hayley. I know I will most likely even surprise the hell out of myself and I will look back and think, "How the hell did I do that?" Or in the middle of the aftermath I may question, "Why did I do that?" I know there will be payback. I know that it can sometimes be bad. But now I make sure that whatever it is, that it is worth it.

I want value for money.

More bang for my buck.

I want a life punctuated by shining moments worthy of all my spoons.

The in between moments may not be great.

It may make it hard for others, or even myself, to understand my illness.

I may have a house that is more dust than decor.

But I choose to prioritise what is important for me.

What makes my life worthwhile.

And lets face it, when Nutbush City Limits inevitably comes on the playlist of every wedding, party, deb ball, or my personal iTunes collection, doing the moves is one of those times it's worth pushing through. Even if you should happen to end up face down on the floor afterwards.

Cheers
Michelle :)

If you pop over to check out Hayley's blog, and you should, tell her I sent you. She has great information about Complex Regional Pain Syndrome (CRPS) as well as being an amazing writer and having a wicked sense of humour. You can also find her on Twitter.

Now if you don't know The Nutbush dance moves, I'm not sure we can be friends.

Wegohealth Health Activist Awards 2012 Best in Show: Blog Finalist!

Next week, the 28th of March (7am of the 29th here in OZ, Argh!), is the awards ceremony for the Wegohealth Health Activist Awards 2012. Amazingly, I am one of the finalists for the Best in Show Blog award. The lovely folk at Wegohealth sent out a pack of goodies to all the finalists and thanks to the lovely Susan, mine made it all the way Down Under in plenty of time. 

Of course I tried to take photos of my goodies and had some help.

Ooooo Presents!!!!

 Putting my foot down and telling Thor and Freyja to sit. 

 Crotch sniff from Thor, removes last vestiges of dignity.

 Token upside down Down Under shot.

 Dog butt shot.

 More dog butt and vane attempts to keep goodies out of his reach.

 Just too exciting.

 No hope of a dog free photo.

 Photo bombing (sigh).

 Excited ghost Freyja is so excited for me that she can't stand still long enough for a decent photo.

I give up. At least I tried.

Don't forget to check out all the fabulous finalists on the list in both the Blog category and all the other categories. Good luck to all my fellow finalists!

UPDATE: Okay I didn't win but that's okay. Huge congratulations to the lovely PCOS Diva who won the Best in Show: Blog award. You can find her here and here. 

Thanks you everyone for all the support and encouragement. This blog wouldn't be the same without the community that has sprung up around it, and for that I say, "Thank You". xx

Cheers
Michelle :)

I know, 3 posts in one week, I've clearly lost my mind. Less dogs and more words can be found in Tabula Rasa and Only as much as I dream can I be.

And because you can't go past a show tune to be happy I give you Judy Garland.

Tabula Rasa

(source)

I am always amazed by is how a single negative comment can outweigh a dozen positive. Doesn't matter if it's about me personally, the blog, my shoes, how I do my hair, cook a a meal or even my taste in TV shows. If I'm not careful, every single good comment can be swept away with one little ,"you suck". Doesn't even matter who it comes from. Stranger, friend, family, that negative is like a tsunami sweeping away all before it. For some inexplicable reason many of us tend to hold onto those negatives. We imbue them with a power that is hard to dislodge. And ruminate upon them until we adopt them as our own. Self-flagellation at it's finest. All because that one comment tapped into an emotional raw spot in our psyche. 

I still recall every nasty nickname or put down, from primary and high school. I remember every time I was told I was not good enough. Not pretty enough. Not smart enough. Not something enough. Most of the time I can put it in it's place, but every now and then a crack opens up in my defences and someone will make a comment and all those old feelings will flare up as raw as they were back the day when they were first laid into my being. 

Being chronically ill my emotional resources are often stretched and on the days when I am really tired and really unwell those negative comments can end up gaining an importance they simply don't deserve. And being chronically ill you will be told all the ways you are doing it wrong, or how your response, or even you, are essentially a failure.

It's bad enough at a personal level, but for me one of the most heartbreaking aspects of living with a chronic illness is hearing how poorly others in the same position, are treated by those in their life. It's one of those times where I wish others didn't "get it". Where you would expect compassion there is, for many, naught but derision and criticism. Somehow our society has moved to a place where people are blamed for illness. Not just strangers, but family members and so-called friends. All competing to tell us how we are doing things wrong. As if illness, or an inability to recover, is somehow a personal failing.

So often I hear tales from fellow patients where they are told that the way they live their lives, deal with their illness, generally choose to live, are wrong. 

They are too engrossed in their illness. 

They are not trying hard enough. 

They want to be ill. 

Or the old chestnut, "it's all in your head".  

Despite logically knowing that we are doing our best under extremely challenging and often painful circumstances, we are often left feeling guilty or bereft because that little voice in the back of our minds, whispers "maybe they are right?" Somehow we give a monumental amount of importance to the perceptions of others. Others who are not living our lives and have only the briefest and most superficial glimpse of our day-to-day existence. We imbue others with an expert status on a topic they really know nothing about.

A long time ago, I realised that the question I needed to ask myself is, "how do the perceptions of others add to my life?" Do they bring positivity and joy, or do they make me feel worse? And if their ledger came up in the negative I put up boundaries or in some cases, cut people out of my life altogether. 

I cannot prevent others from being critical and negative about me and the way I choose to live my life or deal with my illness. But I can choose the importance I place upon their opinions. 

I can choose me. 

And I am worth it.

I choose to surround myself with those who bring me happiness and joy and who help me see that it's okay to simply be me, warts and all. Those who add to my life, not crush it at every opportunity or when I am most vulnerable. There are some I can't avoid, but I now choose how much weight I give their opinions and put a soul-preserving distance between us. 

None of us can control the actions of others, but we can choose whether we allow them the honour of writing on the slates of our lives. And it is an honour. Our sense of self is precious. Too often we are taught to undervalue ourselves and our needs. We carve the negative in stone, and hold it near and dear. We cherish it and repeat it to ourselves until it is all we can see. And in the end no one is ever satisfied. Not those who criticise. And especially not ourselves. 

In life we have choices, and one is to decide who we allow to define who we are. Have those we allow to direct how we feel about ourselves, really earned that power? Do they add to our lives or do they subtract from that which defines our perceptions of self worth? It's a hard lesson and one that takes work. Sometimes criticism is constructive and sometimes it is not. But by learning to value those who add to our lives and equally put the negative in their place, it can make what is already a difficult time a little easier.

Becoming ill you undertake a crash course in sorting out the wheat from the chaff. You are forced to re-evaluate what helps and what doesn't. You are forced to re-evaluate how you see yourself and how you want to see yourself. There will always be someone who puts you down or tells you that you aren't enough, but those people don't deserve the honour of defining how you see yourself. 

It can be challenging and heartbreaking, but you are worth the effort. Never forget that. 

Cheers
Michelle :) 

*Tabula Rasa (Latin) - Blank slate.

Only as much as I dream can I be.

(source)

Sometimes anxiety gets the better of me. I try and fight it. Sometimes well, and sometimes I'm down for the count in the first round. My personality, which worked well in my career, can trip me up if left unchecked in my life as it is now. You see, I've always been someone who likes to be in control  Even now the sicker I am, often the more stubborn I become, as I deludedly try to assert my dominance on the situation. Which of course always works out so well. And I really don't do well with uncertainty. I have on occasion, even been known to catastrophise things. For example, this was my response to having to leave work thanks to my deteriorating health:

 "The world had ended.  The stars were falling from the sky.  My failure was responsible for the hole in the ozone layer, global warming and Justin Beiber.  Even the demise of the Pollywoffle was directly related to my failure (RIP little marshmallow bar of goodness).  My life was over.  I had failed me.  I had failed Mr Grumpy.  I had failed the rug rats.  I had failed my family.  I had failed my friends.  I had even failed the slightly creepy guy who delivered our junk mail. (And I wonder where my youngest gets his drama queen genes from)." (Zen and the Art of Tupperware) 

I like to think this is just another in a long list of less than helpful skills my Type A personality chose to perfect. Up there with deciding to get one of the crappier versions of a crappy illness. None of this half-arsed business here. My anally retentive tendencies would never allow that. Even if the outcome will be undoubtedly shitty, I'll have the best worst outcome, damn it!

Having an unpredictable disorder has not helped. Feel well one minute, out cold on the floor the next. Some days you get lulled into feeling a little less symptomatic and try to do a little more than usual. Like today, I showered, got dressed AND accessorised which of course left me clutching my chest and seeing spots on the bed. Luckily I didn't get all crazy and try to put on lip gloss or I may have been out for the count. So simple yet so unexpectedly difficult. Events like today tend to make me worry. How can they not? 

Some days I can get away with vacuuming a couple of rooms or pottering in the garden. Those days I felt like I did earlier today. But for some unknown reason apart from feeling the white noise of being generally unwell I was okay. As to why today a wee bit of personal hygiene ended poorly, I have no idea. It's not like I get a heads up or can work out why today was worse than those other days. Some days I can have everything in my favour and still end up bradycardic and vague out on the floor. I can tick every single box on my list to give me the best chance of a good day and two seconds later it all ends in tears.

It's been a hard truth to come to terms with for someone as anal retentive as myself. If I'm honest it's one I'm still working on. My tips so far: swearing, sobbing and pouting whilst not exactly getting at the root of the problem do make you feel better. 

It has meant that heading out of the house does make me anxious. I hate admitting that, but it is the truth. If I am going to have a full-body meltdown I prefer to do that in the privacy of my home. Having it in front of others, particularly strangers, still bothers me, even though logically I know it shouldn't. 

The reality is that something as simple as going to the supermarket is a big deal. Not just the physical side of the things like fatigue and weakness, a blood pressure that can drop with little notice, or the realisation that I'll likely have to use the disgusting public rest rooms, no doubt more than once. But the chance that I will fall, have my legs give out, start slurring, throw up in my cart, not be able to sign for my credit card, end up on a bench sucking down water and salt sachets whilst people walk by staring and muttering about the weird pasty faced woman lying on the bench whilst her "poor kids" stand at the checkout (No, I am not drunk or on drugs, judgemental people. Sheesh). I could go in feeling fine and dandy and 10 minutes in be a sobbing blancmange on the foul floor of the public toilet clutching a puke bag. That can make a gal a little anxious.

It's hard. Taking that first step mentally and physically seems an impossibility some days. But the reality is that I can either become a hermit and half live my life in fear of what may be, or I can say "screw it" take a deep breath and hold on tight to hope. Self-imposed exile from the world was never on my To Do list, yet I can easily see myself slowly sinking into it if I don't take myself in hand and down a big can of Harden up, Princess.

I hate the bad days, days like yesterday where I was stuck non-functioning in bed, or days like today that started a little better and went downhill fast. If I could avoid them I would. But I have to acknowledge that sometimes they are simply unavoidable. I do get through them. Every time. It doesn't feel like it in the moment, but I do. At times it's embarrassing or seriously unpleasant, but I'm still here kicking on seven years down the track. I can chose to limit myself in fear of what my body will serve up for the next day or next hour. Or I can suck up my anxiety and let myself reach, seek, look and dream. 

And who knows. I might go arse-up at the check out, but at least I'll have managed to get out of the house, or have some new pots in my garden to admire from my comfy spot at ground level, or wear some fabulous accessories even whilst I am feeling a little like death warmed up on my couch. 

Who knows, tomorrow I may even risk the lip gloss.

Cheers

Michelle :)

Time to shake the crap out of my head. 

Numero Due.

(This scene from Bridesmaids is not unfamiliar.source)

Once upon a time going to the loo was just another boring part of the day. Like most people I went, did what was necessary, and then headed out to continue my day, with nary a thought for the process. There was even a time long long ago in a galaxy far far away, when I could fart without fear. But not now, not these days. My days of enjoying a nonchalant relationship with my ablutions is long past. Dysautonomia with a side of neuropathy, has turned normally uneventful loo time into a death-defying act.

If you are clueless, be thankful. I am quite jealous of your ignorance in the ways of loo complexity. Long may you live in ignorance of the ways of a busted gastric system and the joys of explaining your poo in detail to every medical professional you meet.

There are two ways to go with this illness: Dysmotility or Gastroparesis where your stomach slows to the point of barely moving and you can end up constipated or even impacted. Or, you can end up like me at the other end of the spectrum. Where your gastric system has seemingly been clubbing and ingesting copious amounts of speed when you weren't looking, and you are blessed with constant diarrhoea and fun things like Dumping Syndrome.

There's also this tricky problem whereby pooing (or even peeing) can trigger your vagus nerve. Or just to mix it up (ie your vagus nerve is a dick), when stimulated, this particular nerve can trigger your need to pee or poo. YAY. Sometimes, I feel oh so lucky. My body was not content with simply having my recalcitrant bowel which has meant that I have lived with the trotts every day for two years. No, that was not enough. To up the ante it decided that every time I need to poo, my vagus nerve must be triggered. This has meant that I have nearly passed out on the loo more times than I can count. This of course brings a whole new level of worry to my life. Lets face it the last thing you want is to wake up on the floor of your bathroom only to find yourself decorated in your body's foul offerings. Or, God forbid, on someone else's tiles, or worse, manky public tiles.

You see, at this point, I pretty much need Bear Grylls to come along and do a Man vs Wild episode in my bathroom. I'm sure he could teach me some handy toileting survival skills, or at least how to start a fire with left over toilet rolls and nail clippings. I draw the line a pee-drinking though, Bear can keep that one all to himself.

It all goes a little like this:

1. Eat or drink, anything.
2. Resign yourself to the fact you'll need to go to the loo within the next half hour (on a good day) or next five minutes (on a bad day).
3. Wait for the first hot flush. Ask surrounding family members if they are hot. Have them look at you with a raised eyebrow. Answer with a short sarcastic, "no" and a clearly implied "Dumbarse!" You'd think I'd have learnt by now. But hey, a girl's gotta live in hope.
4. Feel the first wave of nausea and short stabbing stomach pain.
5. Delude yourself that you can wish away said heat, nausea and pain.
6. Some how forget that each time you try to wait, or will it away, it makes it ten times worse.
7. Start to get greying vision and muffling of sound.
8. Decide this is the perfect time to stumble to loo (rather than two minutes before when you could still coordinate your legs).
9. Lurch to feet, grab at door frames and towel rails in the mad dash to the loo. (Tip for the day: towels move on the towel rack and are not a suitable stability aid and you may end up on your arse or sliding your way to a face plant in the toilet bowel.)
10. Start desperate internal dialogue of "I think I can. I think I can".
11. Get to loo just in time for full pre-syncope, hold onto wall and shower glass, brace, and hope for the best.
12. Invoke names of all know deities, offer up first born son and kidneys, if only they will let you make it through the seemingly never ending hell without passing out/vomiting.
13. Ride the wave of foulness.
14. Suddenly realise it's over and start breathing again.
15. Be left a wrung out, weak mess, slumped on loo, with swollen purple feet thanks to the accompanying sudden surge in pooling.
16. Drag self to bathroom sink. Wash hands. Run cold water over pulse points in wrist and wash face.
17. Celebrate that you made it through once more with dignity mostly intact.
18. Make way slowly out to couch. Suck down some fluids and resume normal functioning/nanna nap.
19. Repeat multiple times throughout day.

This process of course can be complicated by:

A) a particularly unpleasant day where you go through Steps 1 through 18, after which you lie/fall on bathroom tiles/crawl back up onto the loo/grab your puke bag/do your best Mt Vesuvius impersonation both ends/breathe/regain enough presence of mind to fall gracefully back onto tiles/crawl back on loo/....rinse and repeat. This process can go on for hours and may end in multiple bruises, much whimpering, and all round woe-is-me.

B) being out in public. These days I plan my trips by toilet availability, and public toilet cleanliness. For example. I know if I am heading into St Vincent's Hospital, there is a clean pit stop at the 1/2 way point at the Blackburn Nth Maccas (I can also grab a handful of salt sachets on my way out). Or if it's a bad day there are three shopping centres, with okayish/bearable public loos, between home and Blackburn Nth. I also know the independent petrol station near the Chandler Rd turn off is sympathetic to a pasty-faced, slightly incoherent and panicked woman with a cane, and lets them use the staff bathroom no questions asked. I also know the placement of all the public loos at the hospital and where Mr Grumpy can drop me off in a rush. Though I did find out the hard way, and with some pitiful tearing, that the reasonably clean public loos near the florist out the front of the hospital is closed on weekends. I can apply such knowledge to my local cafes, shopping centres and in a pinch sections of road with good tree/bush coverage in case it's a desperate au naturale moment.

It should also be noted that even without food or water this toilet fun time can also be triggered by:

1. Standing.
2. Walking.
3. Sitting in a car.
4. Heat.
5. Lack of water.
6. Exertion.
7. Breathing.
8. Mercury being in retrograde.
9. Spilling some salt, walking under a ladder, kicking a kitten in a former life, or.....
10. .......a day ending in y.

Oh, for those long lost days of toileting freedom. Who knew that something so simple could become so complex or restrictive? Or that I would be buying Imodium in bulk? Or have so many doctors view, explore and probe my nether regions? Or long for solid poo, like others long to win lotto? 'Tis a sexy and dignified life I lead.

But what can you do? As Doris Day would say, "Que Sera Sera".

Michelle :)

Doris Day, Que Sera Sera (1956)

Accessing IV Saline: A lesson in futility.

(IV Tequila is looking good right about now. Source)

Back in January my cardio finally gave the okay for regular IV saline. The idea was that it would give me a burst, and that all going to plan, I would then be able to also start a basic reconditioning program (thanks to my dodgy health and malabsorption issues I have lost a large portion of my muscle mass, I only just scrape into a BMI of 17 these days). It was something of a personal coup. IV saline, although fairly common in the US as an adjunct therapy in various Dysautonomias, is simply not done as a regular treatment here in Australia. Once you reach the fun point of complete bodily meltdown you can generally access it as a treatment in your local Emergency Department (ED). But as a regular preventative treatment, well, it simply rarely happens.

There is a large body of both anecdotal and scientific evidence that it is helpful. Hypovolemia (low blood volume) is extremely common in Dysautonomia, as is chronic dehydration. I currently take medications to both increase my deficient blood volume and stop me peeing out my precious fluids every three seconds. IV saline bypasses the dodgy parts of our bodies that refuse to absorb fluids, to directly access the veins and increase blood volume. For many this means being able to function. It also means being able to exercise and gain back some strength, which in turn helps with blood flow and general health. Bonus.

I am constantly on the threshhold of dehydration. On hot days, of which we have many, no matter how much I drink I remain dehydrated. My body simply refuses to absorb oral fluids and I might as well just pour them straight into the toilet bowl. Case in point: last week on yet another stifling day I drank nearly 5litres of fluids and still my lips peeled and my skin was lax and I could pinch the skin on my hands and it would simply stay up in that position till I rubbed it down. I felt like death. Simply put I was ridiculously dehydrated.

Whilst, the idea of being stuck with a needle on a weekly basis is not high on my list of fun things to do (a port is out due to my high infection risk) I am happy to do it as a trial for 2-3 moths over the worst of Summer. 

The risks of IV saline are minimal. Especially when compared to many of the drugs I have tried over the years whose potential side-effects include fun things such as stroke or hypokalemia (low potassium which can in turn lead to a heart attack). 

All in all it sounds like a good option. I also have the support of both my cardio (who is my primary coordinating specialist) and my GP.

Yet....

Today is the 5th of march, 2 months later, and I still haven't been able to find a way to access IV saline on a regular basis. 

Yesterday, I went back to my GP to be told yet again that she had not found a way for me to access IV saline. This is not due to any lack of diligence on her behalf. She is very supportive and has gained support from the clinic head to try and find a way for me to access this simple treatment. Only one problem, there is no where in my local area that is currently able to give me a litre of saline once a week (travel is difficult for me now and any beneficial effects of the saline would be negated by the impact of travel on my touchy body). 

My local dialysis/infusion centre is filled to overflowing. Of the local GP clinics that have a nurse on site, none have the room available to let me sit for 2-4 hours of infusion. Hospital in the Home, a program designed to keep people out of hospital, requires an admission under an in-patient hospital clinic to be eligible in the first place. Private nursing to come to my home is not financially viable. Admission to my local Private Hospital ED would cost me almost $300 for one litre of fluids. My local Public Hospital ED is a less than user friendly environment, plus the risk of picking up a bug is high. 

My GP continues to search and I am grateful she is on my side. But the fact that it is looking like I have more chance of winning the next Tattslotto jackpot than accessing IV saline, is starting to grate.

I can access expensive and potentially dangerous prescription medications with the swirl of a pen, yet I cannot get a comparatively safe and inexpensive litre of salty water shoved in my arm. The craziness of such a system is not lost on me.

I do know that the last time I had continuous fluids for 5 days in hospital my bp sat at around 120/70 for 5 days and my hr in the 60's. My GI remarked at the time that IV saline worked better than Florinef, my main medication. That five day period is the only time I have had such readings since I became sick back in 2006. I should add that was at the time my gastric system gave up the ghost and I lost 16kgs in 2wks. Those fluids worked like magic against incredible odds.

Having regular saline infusions will not cure me. It will not make me fully functional. It will not get me back to work. I not asking for a a port as I know my immune-system is toast. I am realistic in what it may or may not provide me. My health picture is complex and multi-dimensional. But IV saline has the potential to remove at least a part of the many obstacles my body faces. And lets face it the removal of any potential excess disability should be seen as a positive. 

It is hoped that the single litre of fluids will give me the boost I need to exercise and gain back some strength. But it's potential goes far beyond that one basic rehabilitative goal. It may also allow me to leave my house by myself. To pick up my son from his bus stop. Or even go to my local supermarket and buy a litre of milk. To the bureaucracy and politics that are currently stopping me from accessing IV saline that may not mean much. But for me and my family it would mean the world.

I do everything my specialists require of me. I take my meds, I follow my diet, I exercise when I can, I use all the aides they suggest, I make sure I get out and potter in my garden, or write my blogs, or cook, or paint. I don't wallow in my illness and am in no way non-compliant. All of this keeps me semi-functional, but I am at a plateau, a plateau that is slowly edging backwards. 

As I sat in my GP's office discussing the issue once more I could feel the tears forming. Not because I am sad or depressed but that I am frustrated to the point of tears. That such a simple and cheap request is being denied by obstacle after obstacle. 

I am told to take control of my health, to be informed and to seek out the care I need. I am lucky that my specialists are supportive and work with me. But their hands are as tied as mine. The insanity that I can buy bags of saline and all associated paraphernalia on ebay is not lost on me. The fact that if I was wealthy I could access this simple option with ease is not lost on me either. I don't know where else to turn, and I am at the point where I must consider that IV saline is simply not a viable option, just like Ocretrotide or IVIG before it.

It is not the physical aspects of my illness that are necessarily the hardest to bare. It is the constant battle to access and naviagte often basic health care. A battle that continually stretches my already over-stretched physical and emotional reserves to breaking point. It's hard to not become cynical and jaded in dealing with a medical system not designed for chronic and complex conditions. Part of me thinks that the system relies on people like myself and others in my position, ending up too tired to keep banging on about pursing such options. Lets face it the medical bureaucracy is a machine that just keeps ticking. It can wait me out. It'll keep on ticking long after I've collapsed from exhaustion and given up the fight. Part of me also knows that there are good doctors and other health professionals who want to help me, but simply can't. I know that must be frustrating for them too. To know there is a care option that may help their patient and yet they simply can't facilitate access to that treatment. And part of me is just completely over playing the roll of Sisyphus pushing my boulder up the bureaucratic mountain. I really don't want to play this poxy game any more.

I wont let this break me. But I may need a few more rolls of duct tape, a hot glue gun and a great deal of MacGyvering to keep holding my dodgy pieces together. 

Michelle

Highway to Hell by AC/DC just seems so appropriate right now.