Tuesday 18 December 2012

Christmas For One.

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)
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.

Sunday 16 December 2012

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.


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.


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!"

Michelle :)

Tuesday 11 December 2012

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.....

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.