Christmas For One.

(source)

This year is going to be my first Christmas alone. Well not completely alone. It'll be me and the dogs, who are almost as demanding as people. But it's the first year that I have ever celebrated sans humans. Mr Grumpy and the boys are off to Queensland (QLD) to see my in-laws  Unfortunately, QLD and I, or more correctly, hot humid weather plus no AC and I, do not get along. Add in the travel factor and it's pretty much a non-starter for me. Surprisingly (well surprisingly to many), I am not overly concerned about being alone on Christmas, although my extended family are having minor strokes at the thought. Instead, I'm looking at it from a very positive slant. (I told my lovely phlebotomist today I was having a solo Christmas and week this year, and she was as equally excited, listing off all the fantastic benefits of being sans family, this is why I love her. Well that and the fact she can find my veins every time).

You see it's been many a year since we've been up to QLD thanks to my health issues and that's where all Mr Grumpy's family hail from. After much nagging encouraging on my behalf, he finally booked tickets for himself and the boys to head up there for the week. Here's hoping they enjoy themselves.

Why am I am glad they are going? It's simple. They need a break. A break from me and the stress of organising their lives around my health issues. They need to be free of being carers for their decrepit wife and mother. They need a chance to just relax. I want that for them. I want my youngest to swim to his hearts content. I want my eldest to have his first beer with his uncle. I want Mr Grumpy to flake out in front of the TV and watch the Boxing Day Test. I want them to go out for tea if they want, free of worrying about whether I can attend, or if I'll be able to eat anything on the menu. I want them to head out to the beach or for an ice cream. I want them to have normal for a while. I want them to be free of the stress of me, even if only for a week.

It's not to say I am a constant burden. I don't need my hand held everyday or need someone to scrub my back in the shower (although I know Mr Grumpy would be up for that one!) But I know that I, and my health, are a constant unspoken presence that plays in the back of their minds. They need a break from that, and I want it for them.

Personally, I am looking forward to be alone. I know that sounds weird. But everything I do in life, I now do accompanied. I don't go to the shops or even the post office alone. It's never just me. As someone who valued their independence, always needing a hand holder can be claustrophobic at times. It's got nothing to do with the person holding my hand. I am grateful every day that I have a family who support me as I know there are many who are doing this very much alone. But some days I could scream from frustration at not being able to do regular every day activities alone. I am a 39-year-old woman who needs someone to take her to the doctor or the hairdresser, or to simply look at clothes at a local boutique. I feel a burden. I can't relax as I feel like I am wasting their time, even though I know they don't think of it in that way. But my own guilt is a powerful force and it often gets in the way of reason.

A week by myself means that not only am I not inconveniencing anyone else, but I can do things when I want. If I want to have breakfast at midday or dinner at 10pm I can. I can watch the carols without the constant commentary and whinging from the peanut gallery. If I need to sleep I can, safe in the knowledge that I don't have to be organising meals or doing loads of washing. If I want to pot a plant, or paint a picture or watch crap TV I can without having to worry about saving up enough energy to organise family chores like food. I can eat chocolate cake for breakfast or subsist on only ham and turkey for a week and it wont bother anyone. I can swan around in my undies if it's hot or play my apparently annoying music as loud as I want. I may not leave the house for the week as I am still unable to drive more than about 5minutes, but there is a freedom involved that is hard to explain unless you are chronically ill and dependent on others.

The Christmas aspect is kind of a side issue in comparison. Though not cooking the huge Christmas meal and having to put on my happy face whilst I can feel my body dying on the inside, for the extended family, will be lovely. Having to maintain my cool to assuage the fears of others is a burden I wont miss. No doubt on the day I will miss Mr Grumpy and the boys, and I reserve the irrational right to get shitty that they are out to dinner at a restaurant, but knowing they are having a great and relaxing time away will make up for that ten fold. Plus, I can always binge on chocolate to soothe any sookiness. And the dogs aren't going to judge me as I sit as a blubbering mess surrounded by empty chocolate boxes. (Not that this is my plan. I intend to be relaxing and enjoying myself, but it's always good to have a caveat in there somewhere).

I have my food worked out. There is to be duck and turkey and ham. There is to be seafood. I am even thinking of taking the risk and making a mojito or a margarita. I have planned my GF chocolate cake/pudding substitute. Because it is all about the food. I wonder if I can teach Thor to pull a cracker?

My emergency plans are sorted, both health and bushfire.

I can't wait to hermit it for a week.

Now if I can keep my parents from freaking out and landing on my doorstep it should all be good. I have been firm, but it seems they are having trouble with understanding that I want some me time or that I am fine about being alone. Yet again it is only Mr Grumpy and the boys who get it, and get me. Maybe I can get him to sit them down and have the talk.

Here's wishing everyone a merry and joyous Christmas. May you have a symptom minimal day and have nothing but love, laughter and happiness.

Merry Christmas from the Land down Under.

(source: news.com.au)

Cheers
Michelle :)

PS I will be having a bit of a blogging/social media break for a few weeks. Time to sit back and smell the roses. Should be back mid-January.

And a little Australian Christmas Tune from the fabulous Paul Kelly.

On the bright side.

Well it's been a non-stop health blast here at Chateau Rusty, which culminated with me testing the hardness of my floorboards with the back of my head (not something I'd recommend). It must have been elegant to behold. A flailing me trying to grab the back of the couch with my Muppet arms and failing abysmally, whilst my legs slowly collapsed and the world went a tad black. Not to mention me lying legs akimbo on the floor after. At least I managed to keep all the important bits covered. That's always a bonus. Melbourne's fickle weather, migraines and a body that acts like a petulant child are not a good combination.

On the bright side I have managed to watch every episode of The Walking Dead again, (please tell me they're not going to kill off, Daryl) because there's nothing like a little zombie action to make a girl feel better. Now I just need to find a new series to tide me over for the Christmas/New Years TV break. Any recommendations are welcomed. 

On an even brighter note I am up for a few awards in the 2012 WEGOhealth Health Activists Awards. Woo Hoo! Thanks to those who took the time to nominate the blog it really means a lot and it also means that information about Dysautonomia is getting out to a wider audience. Always something to celebrate. I've been nominated in three categories this year:

Best in Show: Blog

Hilarious Health Activist Award

Best Kept Secret

If you want to show your support you can Endorse the blog in the widget in the Top Right Sidebar (next to the post title).

There is still time to nominate the many other fantastic Health Activists for various awards. Simply head over to WEGOhealth. Nominations close 31st December 2012.

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I was also honoured to be asked to contribute a piece for the new Dysautonomia SOS organisation, which launched last month. 

Psychology and Dysautonomia is a review of the quandary that is psychology and Dysautonomia and is aimed at both medical practitioners and patients. This quite a contentious issue amongst patients, many of whom (myself included) have had to deal with the spurious, "it's all in your head" line at some point, and I hope it can provide some clarity on the issue. Big thanks to Claire's big brain and wonderful editing and additions, whilst my brain and body were on vacation. Joining words and punctuation make a world of difference!

This year I was also honoured to be asked to contribute a chapter to the Second Edition of Jodi Epstein Rhum and Svetlana Blishteyn's book, POTS - Together we Stand: Riding the Waves of Dysautonomia. 

The chapter is entitled, Grief and Dysautonomia (Chapter 8) and examines the way grief presents in relation to living with a chronic illness such as Dysautonomia. Grief is something rarely discussed in relation to chronic illness but it is something we all experience to differing degrees. The new Kindle edition (with my chapter) is out now, with the new paperback out soon.

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It's actually been a bit of a fantastic year for Dysautonomia. Not only do we now have Dysautonomia SOS, but also Dysautonomia International launched this year. POTS UK are another organisation that have really gone from strength to strength this past year. We had our first official awareness month and there have been multiple fund and awareness raising events around the globe. There have also been far more articles in newspapers, with a higher degree of accuracy. The most exciting news for me is that more doctors are starting to be aware of the various diagnoses. This last six months I have encountered a number of specialists who had actually heard of POTS, NCS, OI and the like. Such a change to when I was diagnosed back in 2007. This gives me hope. We still have a long road ahead of us, but we have more forward momentum than we've had in a long time.

Congratulations and a huge pat on the back to all who are helping to raise awareness and provide support for those beginning and continuing on the Dysautonomia roller coaster. As Jodi's book says "Together we stand", or as I like to think of it "Together we kick arse!"

Cheers
Michelle :)

To sleep, perchance to dream.

Sleep and I have not been friends for quite some time now. I have forgotten what it's like to simply fall asleep, dream sweet dreams, and wake up refreshed. These days I spend my nights staring at the ceiling and contemplating smothering the happily snoring Mr Grumpy with my pillow as he flaunts his prodigious sleeping skills. (I also fantasise about shaving off one of Mr Grumpy's eyebrows, in my bouts of crazy, sleep-depraved jealousy. You know, just to mix it up a bit). Actually, that's not completely true. In reality I have a persistent, well, persistently crap, sleep cycle  It involves roughly 3 weeks of insomnia, followed by 3-4 days coma sleep, followed by yet more weeks of insomnia,..... repeat ad infinitum.

I simply can't fall asleep. And if I eventually do, I can't stay asleep. Instead, dozing and waking repeatedly, for a few hours. I have tried meditation, sleep hygiene, herbal remedies such as valerian, zizyphus, and camomile  lavender pillows, lavender on my temples, warm baths, warm milk, swearing, begging, crying. None of it seems to work. This old post is still a good reflection of my nights except for the night time pee-fest which the amazing DDAVP has mostly eliminated.

And can I just say that the coma sleep phase is no picnic either. It's not refreshing in the slightest and leaves me just as exhausted as the insomnia, with the fantastic addition of making me even less functional than usual. I'm pretty sure Mr Grumpy is reminded how lucky he was to marry me every time he sees my elegant splayed and comatose form, drooling like a champ onto various pillows. I believe that's what's known in marriage therapy as, keeping the magic alive.

My lack of brain cells and way-to-long list of medical appointments, has meant that this aspect of Bob has been left to languish. I mean how many doctors and ailments can you deal with at one time? It's all about prioritising issues and trying to overcome medical fatigue to drag your arse to yet another appointment. But apparently, it's not that good to ignore insomnia, or so the horrified look on my neurologist's face seemed to say. Rocking up to my appointment pretty incoherent after sleeping less than 2hrs a night for over a week, seemed to alarm her a tad, so she quickly typed out a referral to a local sleep specialist assuring me that he was fantastic. And to my surprise she was right.

How often can you say you see a specialist who is both knowledgeable and friendly? And not fake friendly, genuinely friendly and personable. Even chatting happily to my eldest about Schoolies. To top things off he had recently been to a presentation by my cardiologist on the various forms of Dysautonomia, diagnosis, treatments etc. Jackpot! We discussed tilt tables, clonidine research, alternative and traditional treatments, compounding pharmacies, the works. Whether or not he can help me is almost beside the point, because it is just so refreshing to have a non-stressful medical appointment.

He was thorough and listened. We have a starter plan. I am to have at-home monitoring for a week rather than stay overnight for a sleep study, where as even he acknowledged, I'll likely just stare at the ceiling the whole time and give them little to no information. To make things easier and avoid the travel issue for me, Mr Grumpy can pick up and drop off the gear and he'll even do a phone consult after.

"Whoa!", I hear you say. "A doctor who listens, is thorough, knowledgeable, knows about Dysautonomia, is friendly and wants to make it as easy as possible for me?" Sounds like an urban myth, right? Believe me I was pinching myself just to make sure it wasn't a dream. Day-dream of course, none of that real sleep/dream stuff for me. But it's all true. it was also completely covered, so no out-of-pocket  expense (though the hospital parking which cost me a kidney and the promise of my first born, made up for that). There are some good doctors around, just finding them can be damn difficult at times.

Now as to whether he can help me, I have no clue. But I will bask in the glow of a pleasant medical experience for a change. You really have to appreciate those moments when they happen. After a really dismal and infuriating Dermatology visit a few weeks ago this was just what I needed to renew my faith in the medical system.

Tomorrow Mr Grumpy picks up my snazzy new accessory which will give him a recording of my circadian rhythms, and movements for the week. And from there we will discuss my options.

So a big high five to Professor Snooze, whatever the eventual outcome. Because we need to give a shout out to the good doctors when we find them. And here's hoping that soon I may be able to write a post where all you'll see is a very contented zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.....

Cheers
Michelle :)

PS. I've been lucky enough to be nominated for Best in Show: Blog and best Humour Blog 2012! in WEGOhealth's Health Activist Awards. 

If you want to show your support you can, by endorsing the blog. Simply add your email into the widget on the top right of the side bar (next to the title of this post).

This one's for Mr Grumpy. After talking about smothering him in his sleep I kinda owe him. Having said that I do know all the lyrics to this one thanks to it's prevalence in our dating days. Not quite as chipper as my other choice Mr Sandman.

Dear Bob and co: Day 8 #NHBPM

Well I'm sort of back, but not really. I have managed to make it from my bed to the couch with a mixture of swearing, moaning and old man shuffling, and that's a definite improvement. I have to sit like I have pole inserted where the sun don't shine and still need to bellow for my minions to supply me with sustenance and pain meds, but all in all I'm taking it as a win. Plus I've managed seven days of blogging in a row and I'm damned if I'll let this stupid body of mine get in the way of sharing Day 8 of my crazy with the world.

(source)

Topic: Write a letter to your health.

Dear Bob (Dysautonomia) and Jeff (my mutant jugular) and my recalcitrant digestive system and the rest of the gang,

What can I say guys? It's been fun? Nope that's not it. It's been a blast? Well maybe with you digestive system, given how my innards have been the last year and a half. Who knew doing a normal Number 2 some time this century would be added to my bucket list? Certainly not me. But that's as good as it gets for those challenged in the regular poo department.

And you Jeff, well you just never know when to quit. You've embraced your mutant side with gusto and seen reluctant to move out. Like a damn cockroach, I'm pretty sure you'll survive the nuclear apocalypse So here's hoping the Mayans were right and/or the zombies are coming. That way there's a chance one of the walking dead will give me an atomic hickey and rip you right out.

But you Bob, well you were my first, so you'll always be special. You and I go way back to that first collapse at work. That delightful trip to the ER where I was asked 28 times if I was pregnant. Apparently they don't teach the ER doctors what the word 'hysterectomy' means any more. You'd think telling them I was womb-challenged might have been a giveaway, but no. You lead me to my first fun time with IV fluids and being tossed out unable to walk, because they couldn't work out was wrong. Good times. I feel like right about now I should break out in a heart-felt rendition of Memory. But no that's right I'm banned from that now thanks to you. Belt out a tune and my pulse pressure disappears and I tend to fall over, complete with dramatic grasping of chest. It's been one rip snorter of a party with you. Did you know we are coming up to seven years together? No? Typical. I guess you can blame it on the brain fog, though I'd prefer to blame it on the boogie. Seems the traditional gift is copper. What copper thing can I get you? A 7.62mm rimless NATO round, sounds like a promising choice.

Frankly I'm over you and your dodgy mates, Bob. I think it's time we broke up and went our separate ways. I've never really been into the Big Love thing anyway, just way to much work. You and all your brother husbands can pack your bags. If it's all the same with you, I really think it's time for all of you to just bugger off. It's definitely not me, it's you. It's very personal. I don't want to be friends. I want to be foot loose and fancy free. Preferably on a beach somewhere, with hot cabana boys bringing we margaritas with tiny umbrellas, oh and foot massages and....

So see you later fellas.
Hit the road Jack.....and Jeff and Guts and Bob and all the rest.
And don't you come back.
No more. No more. No more.

Michelle :)


Day I: Why do I write about my health.
Day 2: Find a quote and use it as inspiration.
Day 3: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox 
Day 6: And I've done my back, because it's not like I had anything else going on.
Day 7: Setbacks. Vlog time.

Considering all the male names I use for my disorders I thought this Oz classic by the Divinyls, was perfect.

5 Tips for the Newly Diagnosed Dysautonomia Patient.

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Dysautonomia has been a major part of my life for the last eight years. What I have recently realised is now the majority of my 30's (yes, I'm slow on the uptake). Those early days were scary. Even as a well educated woman, working in health care at the time, I felt alone and overwhelmed  Not a experience I would wish to repeat or wish on anyone else.

Whilst, it is now easier to get clinical information about the various subtypes, diagnostic testing and treatments, it is still the information about what actually living with Dysautonomia is like, that is still lacking. And a quick scan around the forums tells me that many of my early experiences are still being repeated with patients all around the world.

So what do I wish someone had told me right back at the beginning? So many things come to mind, but these are my top 5.

1. You're not crazy.

If I had a dollar coin for every time a fellow patients said, "my doctor told me I was just anxious", well I'd have a really large pile of sparkly coins which are too heavy for my arms of patheticness to carry. Intellectually I knew that I wasn't imagining my symptoms, and I knew I didn't have a mood or anxiety disorder. Yet, the words "it's all in your head" said by one callous doctor, sat in the back of my mind long after I had my diagnosis. Damaging words, and it took a long time to work past that self doubt, even when I had clear test results that confirmed my diagnosis. It's hard to admit that, but it's the truth and it's taken a long time to take my power back from that one cold medico.  I've written about the conundrum that is the ANS and psychiatric diagnoses before so I wont rehash it here. But I want you to know that YOU'RE NOT CRAZY.

Dysautonomia is a difficult collection of illnesses to understand. It is unpredictable and frequently undetectable, by the standard battery of investigations. Symptoms wax and wane. We have a good day followed by a bad. What we could do one day we can't do the next. The permanent Fight or Flight response we live with, leaves our body on permanent high alert. We startle easily and over-react to any stimuli, be it anything from sound to fragrance. And the ultimate joke, is that the brain fog that plagues us thanks to poor cerebral profusion, means we are often unable to articulate exactly what we are experiencing. Search for a doctor who understands Dysautonomia and is willing to work with you, even a single doctor who is willing to learn will make all the difference. Just because a disorder isn't well know, or easy to identify, doesn't mean that you have a psychiatric or psychological problem.  Dysautonomia is a physiological malfunction through and through. I've been there, and so have the majority of patients. Trust yourself and what you are experiencing. You know the truth of your experience better than anyone.

    2.  You're not alone.

When I was first diagnosed I knew of no other patients. Even having worked in neurology I'd never really  heard of Dysautonomia or the majority of it's subtypes. Eventually, the Yellow Wiggle, Greg Page, came out to say he had Orthostatic Intolerance and bringing some awareness to the disorders, but still I had no contact with other patients. Then I discovered a support group, and with it came relief. I wasn't alone. There were other people all over the world who were going through the same issues, and they understood. They understood the stress of the diagnostic process, the absurdity of lying down in the middle of a shopping centre, or planning trips by public toilet availability. They understood the tears and the laughter and the weird thoughts you have that you could share with no one else. Accurate statistics on Dysautonomia are poor at best. It is likely there are millions of people world wide who experience some form of Dysautonomia, especially when you consider that in the USA alone it is thought that over 500,000 people have, Postural Orthostatic Tachycardia Syndrome (POTS), just one of the many subtypes. We are far from alone in this struggle. Whilst social media, such as FaceBook, Twitter and blogging has shown just how many of us there are, the medical fraternity and statisticians have yet to catch up. As my friend Claire says "Dysautonomia isn't rare, it's just rarely diagnosed". There is a whole community out there to stand by you through this, come and meet us. 

   3.  It can be scary at times.

Dysautonomia can be damn scary. I don't care who you are and how stoic you may generally be, crushing chest pain beyond anything you have ever experienced can give you pee-in-your-pants levels of fear. "Am I dying?" "Is this a heart attack?" "Oh God, I'm going to die and leave my kids and husband".  I've had that conversation in my head on more than one occasion. These days I know my normal, which is highly abnormal to regular folk, but in those early days I really didn't know what to expect. Back in 2006/2007 I was nearly blacking out when I was driving, my doctor started mentioning more serious and life threatening diagnoses I needed to rule out, more and more symptoms started developing. Fear of death was pretty high on my radar. These days it takes a hell of a lot more to worry me. Crushing chest pain? Meh. Pain radiating down my left arm? Just another day at Chateau Rusty. I still have fear at times, it's a natural reaction to living with a stressful and unpredictable illness. Most importantly, if you are feeling scared see Point 2, you're not alone, and there are many safe places to discuss your fears and understanding ears to listen.

   4. It's okay to say it sucks.

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.

   5. You're going to be okay.

Those first days and months are hard and scary and lonely. But you'll make it through. You think you wont. You'll want to throw in the towel and scream "No more!", but you'll make it out the otherside. And you'll do it again and again. I can't predict how your symptoms will pan out over time. We are all very individual. Some will get better, some will have symptoms that wax and wane, some will have a chronic but stable process and some, like myself, will progress. Your body may still be broken, but your ability to deal with it, will get better.  You will find your stride. You will find the things and people in your life that matter and make you happy.  You'll be able to breathe, even when it's bad. It wont be easy but you'll find that your ability to cope and your acceptance will grow. Your spirit will heal and you'll find direction you never imagined. You are filled with possibilities and, if you give yourself permission, you'll find them. Being ill can give you a freedom to explore yourself in ways you never thought possible. Life with Dysautonomia or any chronic illness, is a life changed, but sometimes that change is a wonderful thing.

No doubt after I push publish I'll think of more tips, but these are the basics. Just know, it gets better. Not in the Disneyesque sense of shooting stars and rainbow farting unicorns. But in the real world sense  where you're battered and bruised but you're stronger than you thought and more at ease with your life. It takes time, and there will be tears and disappointment and setbacks. But one day you'll turn around and realise that somehow you made it through, and no matter what your body is or isn't doing, you're okay.

Be kind to yourself.
Michelle :)

October is Global Dysautonomia Awareness month. Take the time to raise some awareness. 

Well Mrs R, it seems you have a bad case of FUBAR.

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Okay, so my neurologist didn't exactly use the word, FUBAR. She may have started our appointment by saying I was "special", but as any seasoned chronic illness patient knows, that is doctor speak for FUBAR. You see, out of options A (write your will now), B (don't stress, you've got a good 10 or 20 yrs of painful, untreatable, deterioration to write your will), and C (we have no fricken idea what you have, you weirdarse freak), it appears that I am a big fat C.

Don't get me wrong. I'm pretty happy to finally rule out some of the particularly nasty things which have been hanging over my head as serious contenders for a cause. Lets face it, avoiding a painful death any time soon features pretty high on the win side of the ledger. So a big YAY to no death. And a big old YAY to no long lingering nastiness whilst I'm at it. But a big loud and moist raspberry to no answers.

My neurologist is lovely. She's a top specialist in the country and I know she tried her best to work out what the hell is going on with this stupid body of mine. The testing she organised for me in hospital was very thorough and managed to rule out many hard to pronounce and scary diagnoses. But being told that you're one of a handful of her patients who will most likely never have a name or known cause for their illness, is a rather big blow. Turns out knowing that my current state of health was likely permanent, is a lot different to having it finally confirmed.

The one thing I know from my hospital stay is that I have seen all the top doctors. This was further confirmed by the epileptologist who brought his students in to interview me. As I listed off the testing I've had done and the doctors I've seen even prior to my stay, he was in awe. It's not often that a patient is so thoroughly investigated, being 'interesting' has some perks. So at least I know I've done all that I can do to find some answers. But conversely it means there is no where else to go. And frankly, that's a little disheartening.

I am left with a complex collection of weird unexplainable symptoms. Apparently, it's clear I have severe autonomic dysfunction, that my hypothalamus and pituitary are no longer working properly, that I have either a primary or secondary enteric dysautonomia, progressing small fibre neuropathy, some of my axonal sheaths are thinning, the list goes on and on. My body is clearly breaking, but none of that gives me a definitive diagnosis as to why. And with no definitive diagnosis, I have no treatment plan past symptom management. A cure is no longer a realistic option. I have no idea what comes next, though with six years of consistent progression it's a pretty safe bet that it'll continue to progress. But most concerning for me, is the fact that I don't know if this is something I can pass on to my kids.

I know I have a team of doctors who are all the top in their fields, who are willing to go above and beyond, are willing to investigate anything I suggest, and are equally frustrated. Doctors who take me seriously and work collaboratively despite all the obstacles my contrary body provides them. And thanks to that one fact, I've ticked all the testing/hypothesis boxes off my list. I know in this respect I am far luckier than many other patients. I now also know that even with all this it is still no guarantee of answers, or solutions.

Since yesterday I have alternated between, tears, anger, and numbness. The stress before yesterday's appointment, thanks to all the possible "what ifs" that kept playing through my mind, has taken a toll. Add in that I am in the midst of a bad run of insomnia and my coping reserves are a bit lacking. A long soak in the bath last night and just sitting in my garden today, feeling the earth under my feet has helped. I'm no where near finished processing what it all means. I'm at a crossroads. I've done all I can and I have to make a choice to accept that what I was told is the simple truth. That it is what it is, no matter how much I wish it were otherwise. Sometimes, shit just happens. 

As I sit here tonight I realise that my ideas of hope are evolving. Where once I hoped for a cure, now I hope for happiness and acceptance. And whilst the recency of this news means I am still an emotional basketcase as I sort through all the implications for my life and that of my family, I do believe that happiness is a choice you can make regardless of your circumstances. And if this is as good as it gets I will damn well make the most of it. Besides, happiness really is the best way to give my body the middle finger.

In the words of Peggy Lee,

" Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is "

Michelle :)

Pretty sure this will be playing rather loudly on loop for a while.

Bugger reality, bring on the Mega Piranha.

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Well, it seems I have run out of swear words. Who knew that was possible? I am forced to get creative with classics like "you purple donkey chair muppet" or "tissue sniffing glass bandit". Word salad (with a side of hypoxia) is a wonderful thing. I'm over being an adult, so I quit. Maturity is not for me. No way. No how. I'm going to pout. Scuff my shoes, and say "I don't wanna", over and over again. I'm going to take off my big girl panties and run around the yard swinging them above my head like a mad woman. Okay, maybe not the last one. My elderly next door neighbour may not cope too well with the sight of her crazy, sans undies, neighbour running around like a headless chook. Frankly, even my ever adoring dogs may be forced to re-evaluate our relationship should they see that little display.

I finally heard from my neurologist and will be seeing her this Wednesday. Two days. Ugh. Fanfrickentastic. Time for answers from my week of hospital testing. Stupidly, I've been peeved that it's taken so long and now that it's here and reality is about to jump up and slap me, I wish I was still playing the waiting game. My mind truly is a wonderfully contradictory and messed up place. The way things sit it's really a no win situation. Option A is that I have a disease of the nasty, better get used to the word 'bequeath', variety. Option B is that I have a disease of the nasty, wont kill you yet but there is no treatment and you'll slowly and painfully deteriorate over time, variety. Option C is they still have no idea of what is going on in my body other than I have a bad case of FUBAR, and I am left to continue on as I am, no idea why and no solutions. Which would also mean I have added to my collection of impairments for nothing (go sural nerve biopsy which is still swollen and scabby, 3 lots of antibiotics and five weeks later). YAY me. Can't wait for that appointment. Personally, I think my time would be better spent watching a bad SciFi movie like Frankenfish or Mega Piranha, or stapling empty Lindt wrappers to my head, as I ignore reality and immerse myself in chocolaty goodness somewhat akin to this scene from Chocolat.

On the good front. Youngest is slowly recovering from his second knee reconstruction of the year. And we are both slowly recovering from me having to help him bathe today. An event that surely rates as a highlight of any 14-year-old boy's life. Now if only we could get rid of the pungent teenage boy funk coming from under his leg brace, that would be lovely. In true Chateau Rusty style we did have a small familial celebration at his first post pain med poo. Lots of woo hooing and such. (When I think about it we do celebrate a lot of poo milestones in this household. There is also much in the way of fart humour. We even used to tuck our boys in at night with a goodnight fart, as well as a goodnight kiss, which always ensured giggles. Not much has changed over the years. I'm sure my mother is suitably proud). He's now sitting on the couch eating M&M's and watching movies, so I'm thinking alls well on his end. The good drugs will do that for you. Me, I'm still in recovery mode, though nearly 24hrs of coma sleep did help things along. Baking and gorging on cranberry and walnut hot crossless buns has also helped considerably.

On the personal front there's a whole heap of, out of left field need to be an adult, decision making to be done. All of which has left me feeling a tad overwhelmed, a tad manic, and desperately in need of a break from reality. Sitting in my pjs, watching 'so bad it's good' scifi, with a Lindt IV is looking pretty good at this point. I may even break out a bit of Two-Headed Shark Attack action to make it through.

Cheers
Michelle

I leave you with bad scifi at it's finest (2.6/10 stars according to IMDb) because it must be shared. Gigantic mutant killer piranha who fly and explode, and it stars 80's singer Tiffany and The Brady Bunch's Barry Williams! What more could you want?

Motivational Lessons.

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Part of the Health Care Social Media Review blog carnival hosted by The Afternoon Nap Society.

Topic: What motivates you? What de-motivates you?

Back in my other, pre-sick, life motivating patients to participate in rehabilitation was a large part of my work. Most had experienced an acute event such as a stroke or head injury and had come to the ward for post-acute care. I remember sitting around in team meetings hearing each patient discussed. "Mrs B is refusing to come down to physio", "Mr K is non-compliant with his writing practice", "Miss G refuses to use her dosette box". And off I'd trot to go talk with Mrs B and all her non-compliant cohorts, to try and get her to agree to come down to the gym. I'd go through the usual speal, we'd look at goals, what would get her home quicker, explore why she didn't want to go down to the gym etc. Nine times out of 10, I'd get them to agree, I was pretty good at that aspect of my job. Though sometimes I do suspect that their compliance was somewhat motivated by a desire to avoid yet another encounter with the annoying neuropsychologist, I could be quite persistent. I look back now and wonder how my working self would assess my own motivation and participation over the last few years. On a good day I'd be the perfect patient, self-motivated, engaged, determined. On a bad day I'd be the surly, non-compliant patient threatening to throw a cup (or worse) at my head. It's just luck of the draw.

Motivation in those first early days was easy. Early on I was focused to the point of obsession. I wanted answers. I was determined to get them. I researched day and night. Health professionals make the worst, or the best, patients, depending on your point of view. We aren't satisfied with half-arsed answers or half-arsed medical professionals. We know the system. We know how and where to research. We come in armed to the teeth with journal articles, and wield Cochrane Reviews like broadswords. Don't tell me it's all in my head or my bloods look fine. Don't tell me you don't know that drug or I don't need that test. That only fuels me to continue my search (and imagine various Looney Tunes scenarios, with inept and dismissive doctors playing the role of Wiley E Coyote). And all that dogged persistence did pay off. One year on after my first symptoms appeared, after many wasted appointments, and facing the worst and best of the medical system, I received my first diagnosis, neurocardiogenic syncope (NCS).

That was 5 1/2 years ago. That first diagnosis gave me hope and and impetus to solider on. I took my pills, changed my lifestyle, dotted my I's and crossed my T's. I was the poster child for a great patient. My cardiologist gave me a timeline of six months till my life would be back to normal. It's easy to remain motivated with such a clear timeline. I knew I was ill, I knew what it was, I knew how to fix it. The ultimate health trifecta. But then that deadline rolled around and despite all my hard work, I was worse not better. The focus changed, uncertainty began and motivation become somewhat more complex.

In the past six years I have gone from NCS, to Orthostatic Intolerance (OI), to Dysautonomia and my personal favourite "Michelle's disease". Words like chronic and progressive, or another personal favourite 'confounding' have been added to my file. I have been poked and prodded to the nth degree, not an orifice has been spared, and dignity, just like clarity, is long gone. And the one thing that has become apparent is that maintaining the level of motivation I had in my early days of illness is not easy. And what motivation actually means is no where near as clear as I once thought. Trying to maintain that driving passion for diagnoses and cures is exhausting. Test. Hope. Disappointment. New pill. Hope. disappointment. New doctor. Hope. Disappointment. Repeat ad nauseam. It chews you up and spits you out. In an acute setting you can maintain that high intensity level of motivation, but it is simply not viable in the long term. In a sense you have to let it wax and wane or redirect the nature of the focus to maintain your sanity. 

I am still motivated to seek out answers. I am still compliant with my treatment and management strategies. I have a great team of doctors who I trust and with whom I have great working relationship. But my motivation now is multi-focused. Living life to the fullest, despite my health has become pre-eminent. Along with raising awareness and advocating for others with Dysautonomia and chronic illness, this gives me a break from my own ever present health concerns. Not that I always get these right or even that my motivation for these goals doesn't wax and wane. Chronic illness is hard no matter how motivated you are. Even with the best support systems and best available treatments, it's a heavy burden to carry. I have days where I am highly motivated and days where I just want to crawl into bed and ignore the world. The days where you have a bad appointment, the results you had been so hopeful about turn to naught, where someone in your life makes a disparaging comment about you still being ill, where you see an picture of yourself pre-sick, or find your symptoms progressing despite all your hard work, they can all smash your motivation to pieces. But that's part of the process. It happens. You think "Why bother?" You hide from the world for a while. Or give your disorder the middle finger and push to do something you shouldn't, and pay for it big time. Then something changes. You sit back, take a deep breath, dust yourself off and press on like a rational and motivated person once more. (I feel like the Lion King's, Circle of Life, should start playing right about now).

I have a much clearer picture of what motivation means for me now, and it's not the same as the one my old working self had. Patient-centred medicine is a very different kettle of fish, when you are the patient. Before I knew the theory and I employed it to the best of my ability. But it is only now that I truly understand the motivational process. What I employed with my acute patients can work in the short-term, or in spurts, but it is not a viable long-term model. Finding that middle ground in the long term is an ongoing process for me. Overall, I am motivated and long term that is what will sustain me. But I also allow myself to check out now and then. I can live my life as my disorder or I can live it as me, in all my messed up contradictory glory, as a person who just happens to also be ill. And personally I prefer the latter of the two options.

All these years later there's one patient in particular that I remember. He was an older gentleman who had come to the ward with Wernicke's encephalopathy. He was unmotivated in the extreme and thought I and my tests were fools, or other words starting with 'F' as he was fond of telling me. One day, after 20mins of trying to engage him, I threw in the towel. Instead, I took him down to the hospital garden, we had a coffee and discussed football for the rest of the session. Every session afterwards he came back motivated and engaged. When I asked him why he said it was the first time someone had treated him normally since his admission. Every second of every day since his admission had been filled with medical treatments and rehab sessions. But, for those football-filled 30mins he wasn't a patient, he was just a person. It was like a pressure valve had been released and now he could focus on rehab and getting out of hospital. After that every time I saw him on the ward or in passing, we'd chat about the football and have a laugh. And he kept coming back for therapy. All these years later I finally, truly understand what he meant. In a life that has become so dominated by my health issues, sometimes you simply have to let go of that focus and just be a person for a while, in order to be able to maintain the focus in the longterm. 

What motivates us is different for every person, but what is clear for me, is that different levels and types of motivation serve us at different times. What served me well in the beginning, would be a burden at this point in the game. What served me when I was in hospital in August, doesn't serve me a month later. What serves me today, may or may not serve me tomorrow. My goals and my desire to achieve them are often as fluid as my symptoms themselves. Half the trick is learning when to use each type of motivation and when to give myself permission to say, "stuff it" and take a well deserved sanity break from it all. Fingers crossed I'll get that all worked out soon.

Cheers

Michelle :)

The Black Sorrow's, Chained to the Wheel. (1989)

The Waiting Game

Why must antibiotics smell like arse with a side of toe jam? That's what I want to know. Ugh. If efficacy is measured by malodour, these must be the most incredible bacteria killing capsules of all time. Yep. That's Right. I have yet another stupid infection in my ankle incision and it may be messing with my attitude (and cogitations) a little. Well that and the fact I am still playing the waiting game with my neurologist. Logically I know she is waiting on the final biopsy results to come back, before we can have our big sit down to discuss what was, or wasn't found. But damnit, logic is overrated, and right now I want to be pouty and stampy.

Waiting, waiting, waiting. This is not good for the soul.

I have tried soothing myself with copious amounts of chocolaty delights. In fact, as I type I am waiting on my bestie to bring round a tub of newly discovered chocolate gelati from a local organic takeaway. But even that's not doing it. I may be keeping Lindt in business. I may have a perpetual air of eu de chocolat, but it doesn't change my status.

I'm still waiting.

It is Spring here in Oz and the days are beautiful. Not too hot, not too cold. The air is fresh and the sunshine glorious. The yard is lush with new growth and if I squint just right, I can ignore that it is 90% weeds (I'm sure there's some cosmic metaphor in that). Though they are very healthy and very green weeds. Even the buttercups and onion weed look pretty. I can't even see the rather large Great Dane nards for the long luscious grass. Bonus. Though it does make moving around the yard a bit like a smelly and squishy game of Minesweeper. It is delightful to be in the warm dappled sunshine and listen to the very randy, local bird life. I can meditate outside now, or at least attempt a "So Hum" or two. Though having two dogs sit so close to me that I can feel their breath on my face, or worse still, snuffle in my ear, is not exactly conducive to finding my inner peace.

So I sit and curse as enlightenment eludes me, and still I wait.

I'm trying to ignore it as best as I can. I have even resorted to housework, a good indicator that I am in desperate straits on the coping front. Mind you I now have sparkly clean bedroom and bathroom windows. All the furry black mould that was multiplying and setting up a small feudal society on my windowsill is now gone. I still have yet to work up to the dust bunnies that seem to be reproducing at an alarming rate, but give me another week of waiting and they too will be gone.

And still I wait.

My body is slowly healing at least. I feel more normal sick, rather than the added blargh of the post-hospital/infection recovery phase. Most of the bruising is gone now. Just some sickly yellow/green patches, dead sexy right? The skin where the adhesive dressings were now carries some lovely rectangle scars framing my now lumpy incision lines. Another addition to the visual History of Me that I carry on my body. My thigh and stomach incisions are finally sealed over, which is cause for much celebration. And I no longer limp around the house. All things to be grateful for. But I look at my scars and once more I am reminded....

....I'm still waiting.

I want answers and I want them now. I need to process whatever the outcome and take the next step. Life is going on outside my health (eg, my son goes back in for surgery on the 21st) and I need to tick this one off the list so I concentrate on what is truly important. But I have no control. I can yell and stamp and curse, and tell my antibiotics I hate them (I'm sure they understand, and at least it makes me feel better) but it makes no difference.

I have to wait, and I hate it.

So I'll sit here muttering under my breath like the impatient, angry, crazy woman that I am. I'll sit in my garden and gorge myself on chocolate, and I'll polish my shower till it shines like crystal. And I'll wait like a good patient and slowly lose my mind in the process.

Wait, wait, wait,....why are we waiting, slowly dehydrating, oh why are we wai...ai...ting......

Michelle :)

And just because I need some Patience, and because Guns N' Roses always cheers me up, and because I can't help but do a little Axel Rose dance every time I hear this, well it just had to be shared.

RUOK Day 2012: Chronic Illness.

RUOK? day is coming up on the 13th September here in Australia and it's time to get involved. This brilliant initiative began in 2009 and has grown every year since. As the site explains:

"R U OK?Day is a national day of action dedicated to inspiring all Australians to ask family, friends and colleagues, ‘Are you ok?’ By regularly reaching out to one another and having open and honest conversations, we can all help build a more connected community and reduce our country’s high suicide rate."

"Connection and open, honest conversations are good for our wellbeing – whether or not we’re struggling with a problem. It helps us to feel valued and supported by the people around us. There's also an emerging body of research which links supportive social relationships and a sense of social connection with protective factors in suicide prevention."

As I wrote recently (here) the incidence of mental health issues such as depression or anxiety, are very high amongst those who live with chronic illness. As a group those with chronic illness are faced with illnesses and disability that are measured in years or, in some cases, life times. The physical toll is often high, but it is the mental and emotional toll, which often goes unknown by all but the sufferer, which frequently creates the greatest burden. It is important that we start the conversation about the mental health burden of chronic illness, particularly when unlike many of the chronic physical conditions, it can be addressed successfully with appropriate support.

The issue is complex. Stress is often multi-factoral and many are reluctant to discuss their difficulties for fear of being perceived as weak or the stigma associated with mental health issues. Dysautonomia is an umbrella term for a complex series of disorders that arise from the malfunction of the autonomic nervous system. Some forms are rare, but even amongst the more common forms, they are rarely discussed and not easily identified. Patients often experience long and stressful journeys to diagnosis. Even once diagnosed, the complexities of the disorders and lack of information and treatment pathways lead to ongoing high levels of stress. Add to that the severity of sometimes disabling long term symptoms experienced by many and it is not surprising to find that if actually asked, many patients will respond that they may be functioning but they are not necessarily OK.

Those with chronic illnesses that are rare or poorly understood such as the Dysautonomias, often face a long and soul crushing journey to diagnosis. With symptoms that are frequently vague or fluctuating, patients are told "it's all in your head", "you just need to get out more", "you're depressed". Many are faced with insinuation or outright accusations of malingering or lying. The story is repeated again and again on forums around the world. Even long after diagnosis these words continue to haunt patients who continue to hide their stress levels for fear of reignitig old accusations.

Being a chronic illness many find that their friendships and social relationships fall away over time. Friends who initially came around with a casserole or offered to take a child to school, call around with ever decreasing frequency or, simply disappear. Social isolation is a huge issues for many. Especially those patients in isolated or rural areas, or those in countries where little is known of the disorder. Even in larger cities and centres where there are more patients, it can be difficult to organise face-to-face meet ups with patients who are fatigued, have mobility issues and, thanks to the quirks of the disorder, may have to cancel engagements at the last minute. Whilst fellow patients may understand this, often friends and family do not and social invitations slowly evaporate. In my own case, many friends I thought would always stay by my side disappeared as my ill health increased. My circle of friends decreased over time until now I can count them on one hand. Although I would say chronic illness does aid in rapidly sorting the wheat from the chafe and whilst I may not have the same quantity of friendships the quality is far better. (online friendships have been a saviour, but that is another post).

Intimate relationships change. Husband and wife, becomes carer and patient. Trying to maintain a marriage in these circumstances can be very difficult without dedication. Often outside guidance and counselling is required to traverse the new and changing relationships. Marriage breakdown is common and even dating is often difficult. The strain of constant illness, inability or infrequency of intimacy, financial concerns, difficulty in maintaining roles such as house keeper, parent or cook can all mount to create problems in relationships. Additional difficulties can arise when a partner requires aid with personal care needs such as showering and toileting. Where does the role of husband stop and carer begin? Navigating these changes can be very difficult for couples many of who attempt to do this in private for fear of embarrassment or feeling like a failure. 

Parent/child relationships also change. Adult children may be forced to move in with aging parents. Conversely, young children can become carers for their adult parents. Parenting with chronic illness is difficult. Being able to care for small children when you can barely stand or are worried about passing out can be both heartbreaking and dangerous. Guilt is common. Even when the children enter the teenage years they may be forced to care for sick parents or are unable to socialise with friends and relationships can become strained. 

Many teenagers with Dysautonomia are unable to go to school or participate in regular teenage pursuits such as parties or sports. They are reliant upon parents at a time when they are normally asserting their independence. Again conflict can arise and strain exists for both patient and carer.

Work commitments are often challenged and unemployment is not uncommon for many patients. This creates not only a financial burden to families, but also a loss of identity. The first question asked at social functions is often "what do you do?" For someone recently unemployed this can be difficult to deal with and often those asking the questions are stumped as to what to ask next. For many, a career equals identity. We understand when someone says they are a doctor or teacher. There is a whole social schema that goes with each label. For many, myself included work was a joy. After years of study and working hard I had a job that I enjoyed and felt was making a difference in the lives of others. To give that up after a year of battling increasing Dysautonomia symptoms felt like the ultimate surrender. I felt like a failure. Added to that was the guilt of the financial burden I was placing upon my husband which was and continues to be high. 

Independence is often the first casualty of chronic illness. Simply being able to do the grocery shopping by yourself can be difficult. Many patients who experience frequent syncope are no longer allowed to drive which leaves them reliant on others for transportation. Being able to garden or go to the movies can be a Herculean task. A patients' identity can often seem lost with each small piece of independence that disappears. Spontaneity is no longer possible. A friend calling over for a quick, unexpected coffee can be overwhelming. Patients need to prepare for outings and entertaining through rest, medications, extra fluids and salt, after which they still may be unable to participate thanks to the unpredictable nature of the disorder. It is the normal social situations that others take for granted, particularly the small things such as going to a cafe, that are frequently reported as most missed by patients. And the inability to do such simple things often serves to highlight what they have lost.

Cognitive problems are also common in Dysautonomia thanks to poor cerebral perfusion, fatigue and medication issues. Patients are embarrassed by lapses in memory, inability to complete simple tasks, read a book or follow a conversation. For many, on a bad day, speech is impaired both cognitively and mechanically. Many withdraw from social interaction as they are either self-conscious or simply unable to take in all the competing information.

All of these issues are on top of the physical symptoms of the disorder with which patients contend with 24/7 (tachycardia, bradycardia, hypertension, hypotension, syncope, pre-syncope, weakness, fatigue, poor thermoregulatory control, gastrointestinal symptoms, urinary frequency, seizures, to name but a few). Whilst the physiological symptoms of Dysautonomia can be difficult to live with, it is the impact that they have on daily life, the social, psychological and emotional issues that many patients find the most challenging. 

The support for those suffering chronic illness is greatly lacking. Care fatigue ensues amongst friends and family as time passes and a patient either doesn't get better or, gets worse. Chronic illness doesn't fit into the normal sick paradigm associated with acute illness. There is no easily identifiable illness or injury, no clear and distinct treatment path and frequently no identifiable resolution after which the patient can resume their regular role in society. This leaves chronic illness patients vulnerable both medically and more importantly psychologically.

People stop asking if you're okay. As one of my readers wrote, "when I asked her why she didn't call to ask how I was, she responded "it's just your normal. I thought you were used to it"". Chronic illness patients are frequently forgotten until a crisis occurs. We develop means of coping, putting one foot in front of another, because there is no choice. There is no resolution as the disorder is chronic, you must learn a way to cope. Patients may smile and laugh , because they have learnt to find humour in the small things, but that doesn't mean everything is okay. It doesn't mean they are okay. It doesn't mean they are coping. Many are barely holding it together. Being strong for years on end is difficult. Sometimes we all need to be asked "R U OK?" 

Please take the time to ask the people in your lives R U OK? If you have someone in your life living with a chronic disabling illness like Dysautonomia take the time to truly ask "R U OK?" It wont take long and they will appreciate that you care. You don't have to solve their problems, just listen and be there. Start the conversation. 

If you are unsure how to ask someone, R U OK? Day has some fantastic resources available. 

Importantly, if you're the one who isn't OK, but you're not sure how to tell someone or ask for help, they have information and resources here. 

You don't have to be in Australia to participate. Nor do you have to stick to one day a year. You can ask "R U OK?" anywhere, and any time. Start the conversation and change a life.

Cheers Michelle :)


If you like, feel free to share.

Some days you can either cry into your pillow, or you can be Batman.

Okay so maybe I'm not coping so well with all these health shenanigans. I'm a week out of hospital now and still a mess.

Those who followed on FB will know my week of hospital testing was not the smoothest of runs. Rather than bore you with it all, here's a quick synopsis.

• I left 3kgs lighter thanks to food services who couldn't cope with my dietary intolerance and allergy issues. Fasting each day for a repeatedly cancelled MRI didn't help matters along either.
• When I finally went for my MRI I discovered that medazelam doesn't work on me. Survived thanks to many tears and "So Humming" the hell out of my meditation techniques. 
• A post-op heart attack scare which led to an unplanned night with my roomie Lois, who thought an Islander christening was going on behind the curtain next to her bed. All. Night. Long. 
• Another discovery that despite a bright red hospital wristband and personally speaking to the neurosurgeon, anaesthetist and head nurse during pre-op, you still wake up covered in bright red welts from the adhesives you told them you were allergic to, but they used anyway. 
• And then there's that bucket load of pain thanks to three large incisions in my leg and belly.

Now one week later I am stuck in bed with an infected ankle (sural nerve biopsy) incision, widespread numbness (expected) and spots of near permanent electric shocks (not so expected, or fun). My thigh (open muscle biopsy) still black, with new and exciting levels of bruising coming out. tearing of the wound when I move, plus electric shocks radiating from the site (again, this does not fall high on the fun metre). And a stomach (fat biopsy) incision that, like the other two, refuses to heal.

To add insult to injury I missed my son's 18th birthday dinner last night so now I feel like a super shit mum to boot. A tear or two may have been shed into my pillow last night.

Of course I am dealing with all this in the most mature way.

Conversation with youngest son today:

Me: I'm staying in the Batcave today, Bud.
Son: Why don't you put on [other son's] Batman costume and we can take pictures?
Me: Why not?

And the result?

Some days you can either cry into your pillow, or you can be Batman.

Today, "I'm Batman".

Cheers
Michelle :)

PS I'd like to say it's Alfred's day off, but really my bedroom hasn't been cleaned in a long time.
PPS I have discovered that having a bedroom where every wall, ceiling, carpet and fixtures are 80's salmon pink is not really conducive to healing or my mental health. If I start writing REDRUM all over the blog, blame the salmon colour scheme. The 80's really do have a lot to answer for.

"What doesn't kill you, makes you stronger" and other BS sayings.

When I first became ill my doctors tried to comfort me/fob me off/make me feel whingy, with the "it wont kill you" line. And so far they are correct. I'm still not pushing up daisies, although some days I do feel like I should. I may look like death. I may even feel like a warmed up version of death on what is now a fairly regular basis. But I'm still here, kicking on, or crawling on, or lying elegantly on my bathroom tiles still breathing if not moving. Whatever the truth may be.

I realised today that unlike the ridiculous saying in the title of this post, I don't always feel stronger for all this crap. By rights I should be the Arnie of the illness world by this stage. But apart from a really bad attempt at "I'll be back", I am feeling a little on the lacklustre side of the ledger.

Monday I go into hospital for the week to try once and for all to sort out what the hell is wrong with this old body of mine. It's going to be a hell of a week. I made the mistake of reading over the neuro registrar's letter that lists all the things I need to be tested for and all the painful ways they are going to do just that. And frankly a little piece of my mind whimpered a pathetic "mummy", whilst it rocked in the corner.

I've known for a while that something less savoury is going on with my body. But compartmentalisation and denial have been wonderful bedfellows and I've been reluctant to kick them out. Now I am faced with having to take it all seriously. By the end of next week I could have an answer. Or not. I don't know which is worse. If I get an answer it means something rather nasty is happening to my body. Something that may or mostly likely, may not have a solution. Or even better may have a solution that I am no longer well enough to attempt. Both my neuro and the neuro registrar were very clear on that, again and again. No room for false hopes.

Or I can be poked and prodded, scanned and zapped, for a week and come out none the wiser. Stuck in the holding pattern yet again, with only a few extra nifty scars to show for my efforts. Which is worse? Knowledge or no knowledge? I'm not sure at this point. Though it would be nice to have a proper name for this damn shadow that follows me everywhere. It'd be nice to know what I'm up for, even if it's not that great. It'd be nice to have certainty once more, because I sure as hell have missed that over the last six years.

Because despite all the assurances that "it wont kill me" or I'll get some fricken' life changing epiphany from the last six years of my life, it doesn't make it any easier. I'm tried of being sick 24/7. I'm not all smiley, perky, moonbeams and sunshine. I'm not the brave sickie valiantly fighting the good fight and worthy of a Hallmark movie of the week. I'm just me, and I'm tired. I'm bitter, and I'm pissy. I want to say a big FU to the universe. Just for once I want an answer. Just for once I'd like to get it without pain and fear. Just for once I'd like to feel well. Because I really don't know what that is any more.

I don't want empty platitudes. I don't want someone to tell me it'll all be okay. Because it may not. Because that's not reality. Because none of those sayings mean a thing when I can't stand or stop the pain shooting down my legs, or am throwing up in yet another public loo. I want someone somewhere just to say "I hear you". To acknowledge that yes, this is shit. That no one should have to deal with this. And that it's okay to say just that.

I know people don't know what to say. That they mean well. But every time someone trots out those perky sayings, they might as well just tie a gag around my mouth. Because each one tells me to be silent. To not raise my voice. To stuff down my feelings. To not rock the boat. And most importantly, don't make others uncomfortable by my suffering.

I have fears. They whisper in my ear at night. Fear that I'll get an answer. Fear that I wont. Fear that the damn tests themselves could leave me with further pain. Fear that if I share these fears that I make them real. Fears that live alongside all my positive affirmations and distraction techniques. Fears that still exist even when I laugh and act the fool. Because that's reality. Because not sharing them, or pretending they don't exist, doesn't make them disappear.

So my emerald suitcase lies open and empty on the bed. And today I just want to crawl inside, zip it shut and hide from the world. Because I don't want to be strong today. Because this sucks. Because it scares those who love me, just as much as it scares me. Because I can't give them those empty platitudes. Because I wont lie to them. Because they deserve the truth. And if that truth is unsavoury and unpalatable, so be it. We will deal with it because there is no other choice.

We tell lies when we are afraid....Afraid of what we don't know, afraid of what others will think, afraid of what will be found out about us. But every time we tell a lie, the thing that we fear grows stronger.

Tad Williams, Storm (1993)

So I'll share my truth. I'll shout it from the roof tops. It'll be battered and bruised. It'll burn the eyes and hurt the ears. It'll make many uncomfortable. But I wont be placated. I wont hide. And maybe, just maybe, those fears will grow weaker.

Michelle

Mantras

Photo: Morning sun through fog. Sherbrooke Forest, Australia. 

Taken on my mobile earlier this year.

I wrote this passage on Facebook the other day and it seemed to resonate with many so thought I'd share on here too. It's taken a long time to get here and sometimes I slip back. But picking myself up and trying again is what matters in the long run. It is pretty much a summary of how I deal with all the stressors and challenges of living with a chronic illness.


Before I became ill I had big plans. For a long time after my health declined I mourned those plans and was consumed by hopelessness. Now I realise that my old dreams were small and I am capable of much much more. The world is full of possibilities. The only difference is I have to step outside of the box and give myself permission to embrace those less familiar paths. A while back I made a conscious decision to change how I view my world. To not beat myself up when I get discouraged, because that's part of the ride, and you can't move forward by denying those moments. And to know that I wont get stuck there again because I made it out before. The world can be beautiful. The pain, the fear, the uncertainty, the slow break down of my body all serve to make the good moments shine even brighter. I just have to remember to appreciate that.


Be kind to yourself.
Michelle :


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