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 :


Remember to get your entry in for the big Thank You/Blog Birthday/Pampering GIVEAWAY. Closes 2nd August (AEST).

Ain't no mountain high enough.

For those of you who follow on Facebook you'll know that it hasn't been the rosiest time here at Chateau Rusty. Last Wednesday saw me at the neurologist's expecting to organise a long overdue repeat MRI and EMG. Instead, I was met with a worried and confused neurologist who wants me hospitalised for a few days to be investigated by various specialists and have a large number of nasty tests. From nerve and muscle biopsies, to the dreaded bone marrow biopsy, and everything in between. All to be followed by being presented to the neurology department for discussion and brain storming. Amyloidosis rears it's ugly head again, but this time is joined by a long list of barely pronounceable diagnoses, all of which fall into the Oh Shit category.

Still waiting for the coordination to be worked out. Hopefully, I can be knocked out and the pathology guy can go crazy taking all the biopsies in one hit. Fingers crossed that works out. And that there are good pain meds when I wake up. At the very least she has promised that I can be sedated for the MRIs and for that alone I am grateful (long time readers will recall my pathological aversion to MRIs from here). As we were shuffling out the door I realised I'd lost track of all the tests she ordered half way through. I'm thinking it was some sort of dissociative fugue, brought on by my lack of mental preparedness for her reaction and general pee my pants fear that threatened to bubble over. 

Whilst I am glad that she wants to really investigate things for me, it was all rather confronting, and if I'm honest, it is just a wee bit scary. I'm used to my decrepitude. It is my normal, but apparently to others it is rather high on the abnormal scale. Amongst other things I've managed to completely lose the reflexes in my feet and even my tongue muscles are wasted. What this equates to I don't know, well apart from adding to my "interesting" factor. I knew my neuropathy had spread and my functioning had decreased, but as the L-Plater is known to say, it seems "Shit just got real". Very open to hugs, well wishes, crossed fingers, prayers and whatever good vibes to which you happen to subscribe, at this point.


I have decided to face the prospect of hospitalisation, painful tests, and a less than stellar diagnosis in the only way I know how. Denial. It's a very pretty place and I'm quite happy here. I like to think it's a bit like Moldova's 2012 Eurovision entry (Thanks Kate for reminding me). A little bit out there, but with an annoyingly catchy tune. (Love that Sweden's, Loreen (my mum's side of the family) won this year. But trying disparately to forget my Dad's Irish heritage in the form of Jedward. Okay, I may be a bit addicted to Eurovision. For those who've never watched or heard of Eurovision, you must watch this fascinating documentary on it's history. It's available on Youtube in 9 parts). 


In the meantime I have set myself some challenges. First of those is to get out each day and walk to the top of our road and back. It works out at about 100m but it's uphill, so I figure that's about 1km on a flat road. Plus, it has the added advantage of allowing me to roll the whole way home if my legs give out. I wouldn't attempt it alone and luckily Mr Grumpy is happy to come with me to hold me up, or carry me home, as the case may be. It's not easy. Half way up yesterday I thought my lunch was going to come back and say hello. And by the time I managed to get home my bp had dropped and I was in need of a nanna nap. But at least I was out of the house for once. Once my body stops feeling like someone attacked me with a crowbar I'll be out there again.

I know 100m seems farcical to those who are well. But I can tell you with absolute certainty my fellow Bobetts will be sending high fives and waving pom poms, at such an incredible feat. Given how much my health has deteriorated over the last few months, this one pissy hill is like Everest. And I'm going to given myself a pat of the back.


Next on the list is to do Deepak Chopra's 21 Day Meditation Challenge. I have been doing meditation on and off for years but always end up side tracked. Prior to my increased mobility issues I had hoped to go to the local Buddhist temple and learn there, but that is just a logistical nightmare at the moment. So when friend and fellow Bobette, Coppelia, posted this challenge I thought it sounded like just what I needed given my stress levels are a tad high at the moment.

Bonus is it's free. Important when money is tight. I also know that once signed up I'll feel like I have to do it, rather than make excuses. Mind you it's only 15mins for each class. If I can't find 15mins in my day for meditation something is very very wrong. Two days down so far and I must admit I am enjoying it.


So between my daily 100m walk and meditation it has to help. Tell me it will help!


Cheers
Michelle :)


PS Don't forget to enter the Pampering/Thank You GIVEAWAY. 
PPS I am working on a post of Answers to all the Questions left on this post. It should be up soon.


Can't go past a bit of Kate Bush musical accompaniment. Just replace 'Running' with 'Stumbling'.

I've added Wuthering Heights as I may have mimicked Kate Bush's dancing skills and singing on more than one occasion over the years. A little tip: don't try her dramatic dance moves when you've had a glass of forbidden wine. You're tail bone will not forgive you when you land on it.

How do you celebrate when your blog turns Three? Why, with a fabulous Giveaway of course!

When I started this blog three years ago I could never imagined how much it would grow. Initially, it was simply a place to record my thoughts. My diagnosis of Dysautonomia was still relatively new. And I was still trying to traverse the ups and downs of living with an illness that had dramatically changed my life. I never thought anyone would read my ramblings. Well, apart from pity reads from friends and family. To be honest I thought I'd do it for a few months and then forget about it. But something unexpected happened.

One-by-one people I'd never met started leaving comments. People from all over the world, some with Dysautonomia, some with other chronic illnesses, some with no health issues of their own but who also had an equally warped sense of humour or could relate in someway to what I wrote. Over time more people found the blog and a really lovely community developed. I get emails everyday from people thanking me for giving a voice to their experience or helping them find a little light and laughter in the midst of what can be a truly difficult time. Those emails mean the world to me. Being able to help someone, even in a small way, makes the whole blogging process worthwhile.

But it's not a one way street. The support I've had from readers still blows me away. Complete strangers who take the time to care during the hard times and who can laugh with me during the good. Many of those strangers have become friends in every sense of the word, though we have never met face-to-face. That support and the sense of community make what is often a difficult time bearable. And for that I will always be grateful.

Chronic illness strips away much of who you are. It is hard. Damn hard. Sometimes you have to make a concerted effort to find something that makes it easier. For me it has been finding ways to pamper myself even when I am at my sickest. For example, I can whip on some gorgeous hand cream even if I can't sit up, or I can snack on my favourite treat whilst I'm stuck on the couch. Those little things make it a little easier to deal with. And this is what I want to share with those who have supported me through the past three years here on the blog.

I want to give a little something back to say thank you. And thanks to two of my favourite companies and some generous and talented fellow Dysautonomia patients I am able to do just that.

To celebrate Living with Bob's birthday, it's time for a focus on a little pampering. It's time for...

...a GIVEAWAY!!!!

Prize 1: 
For the past couple of years I have been using the gorgeous body products of a local Australian company, MOR Cosmetics. My sister first sent me their Marshmallow hand cream in a care package and from that time I've been hooked. And it is the Marshmallow range that continue to be my favourite in the fragrance range (as evidenced by the growing collection on my bedside table). The products themselves are luxurious, but it is the eye for detail, which includes the packaging that sold me. Anyone who takes the extra time to create such beautiful packaging knows about luxury and pampering. 

Huge thanks to the lovely folk at MOR, whose generosity means that I am able to share three of their lovely products from the Marshmallow range, with one lucky reader. MOR describe the Marshmallow fragrance as a "Vanilla Musk with Jasmine Flower gloriously rapture in this pretty, feminine fragrance. Sugar dipped Rose Petals with White Carnation & Cotton Candy blend beautifully to create a deliciously sweet perfume". I'd describe it as a little slice of heaven. 

The prize includes:



Marshmallow Body Cream: A silky, whipped cream designed for intense absorption, with emollient
to soothe & protect dry skin. The luxurious moisturising experience lingers throughout the day with a delicate, soft sweet scent.

Marshmallow Hand Cream: A rich, decadent cream that turns unkempt hands into the softest of
Marshmallow mittens. Shea Butter & Sweet Almond Oil mingle with extracts of Marshmallow, Peach & Vitamin E to pamper, restore and protect hands and nails.

Marshmallow Triple Milled Soap: Feelings of sweet nostalgia are kindled with this pink, vintage inspired, Triple-Milled Soap Bar that produces a soft rich lather which pampers and softens dry skin.


Bliss.


Prize 2:
I call this one Ode to Dysautonomia, and it fills me with pride. The Dysautonomia community is both generous and creative. This is a collection of awesome. Products range from jewellery and accessories to  beautiful aromatherapy products. Pampering in anyone's language.

Double sided headscarf (above) and rose hair clips (below) from Cherry Pie Accessories by Claire Barnier:  As Claire says "Every girl has the right to feel glamorous and I believe they can - it's all about accessories! I create many things from fabulous fascinators, cute kawaii hair clips, glamorous Rockabilly, burlesque and Pin-up styles to Punk and Gothic inspired pieces and generally gorgeous girly things. Cherry Pie accessories' mission is to make you feel fabulous by adding just the right touch to complete your outfit and put that spring in your step that only comes from finding the perfect accessory! Each product is handcrafted with love and Cherry pie's unique style using specially sourced new and upcycled materials". Claire has kindly donated the gorgeous double sided headscarf pictured above and hair clips below.

Metal Stamped POTS earrings from 'Tennille's Jewellery': Tennille creates unique metal stamped pieces in  copper, brass and stainless steel. The hooks are sterling silver, so safe for those with nickle allergies.

doTerra essential oil Introductory Kit: This lovely kit containing Lavender, Lemon and Peppermint oils was kindly donated by Vickie Isaac, whose daughter has been using them in the treatment of her Postural Orthostatic Tachycardia Syndrome (POTS). A beautiful accompaniment to any pampering and well being session. They can be used topically, internally or aromatically. I'm loving the freshness of the lemon scent. More information can be found at (rechecking the links sorry should be up again soon).

Prize 3:

2 Photographic Prints by Kyli Wolfson: Kyli Wolfson discovered her passion for photography in the beginning of her journey with POTS. It quickly became an outlet for her. She discovered that by taking pictures she could freeze a beautiful moment in time and allow others to escape there as well. After that, she was hooked! Kyli has kindly donated two of her beautiful photos size, 16"x20". Both of these photos (below) were taken on the beautiful Mackinack Island in Michigan, USA.   

Prize 4:
One of the quirks of Dysautonomia is that patients are often prescribed a high salt diet by their cardiologists and neurologists. Although necessary, it can be hard to stomach at times. Last year I discovered a most delicious way to meet part of my daily intake, Lindt Excellence, A Touch of Sea Salt. My discovery of this culinary miracle was most surely accompanied by a choir of angels and a beam of light falling directly on the neatly arranged blocks on the supermarket shelf. Salt and dark chocolate, this my friends is pure brilliance. Since that time A Touch of Sea Salt has had pride of place in my refrigerator. Word of A Touch of Sea Salt spread quickly and it has since become somewhat of an unofficial chocolate of the Dysautonomia community here in Australia. Now I can truly say my chocolate intake is purely medicinal.

Now thanks to the lovely people of Lindt Australia, who generously donated 10 blocks of A Touch of Sea Salt for this giveaway, I can share the joy.

To spread the joy there will be five chances to win 2 blocks each of Lindt Excellence, A touch of Sea Salt. 

 (So pretty)

How to Enter:

The competition opens as of, 9am Thursday the 19th July 2012 (Australian Eastern Time).

To enter simply leave a comment at the bottom of the post sharing your favourite way to pamper yourself.

For extra entries:

Follow me on Twitter 

Follow Living with Bob (Dysautonomia) on Facebook

The giveaway will be closed & drawn, 5pm Thursday 2nd of August 2012, (Australian time) using the Thor Method. 

COMPETITION IS NOW CLOSED.

A huge thank you to MOR Cosmetics, Lindt Australia, Claire Barnier, Tennille Pooley, Vickie Isaac, and Kyli Wolfson, for helping me say thank you to all those who have supported me and helped to make Living with Bob the blog it is.

Cheers
Michelle :)

What's For Dinner Mum?

This is an old post I originally wrote for 12 More Pages back in 2010. I've only just realised I never put here on the blog, after searching and swearing for the past hour. So here it is.

(photo)

Ok I've decided to jump right into the day-to-day practical issues that haunt all of us with Bob. It's these bland and normal daily chores that often seem to cause the most grief. Making dinner. Who would have thought it could become such a drama. Yet each day when that time rocks around and that simple sentence is spoken aloud “What's For Dinner Mum?”, it's just another reminder of the obstacles we have to face. I'm sure someone without a Bob in his life would wonder at the ability of such a boring daily chore to arouse such feelings of dread, guilt and hopelessness. For those poor buggers who innocently utter these words please note that you may have your spleen pulled out through your left nostril on occasion. It's nothing personal. But those four little words can be like fingernails on a chalk board some days. So the question remains, What is it about dinner that does this to us? 

The time of day: ok I know for most of us mornings are like diving head first into the bowels of hell. There's something about Bob and mornings that just doesn't mix. It's the whole oil and water thing and I'm sure Bob is one of those trans-saturated-clog your arteries kind of fats. But the late afternoons and evenings can be just as bad. By that time you've spent very available drop of energy going to work (if you still can), getting kids to and from school and after school activities, attempting household chores and generally just making it through the day. The idea of then having to prepare a meal can feel like trying to scale Mt Everest in your Sunday Best. Where's my Tenzing Norga? 

The thought process: now it's time to think what can we eat? I couldn't count the times I've stood staring into the fridge trying to decide what we can eat. It doesn't matter that all the ingredients are there. You still have to put together a plan. You can't really make a meal out of oranges and butter (though I'm sure that's someone else's idea of bliss). This means you have to use what little brain reserves you have to put together something edible and hopefully nutritional. Though sometimes just edible will do. Eat a banana if you want nutritional. And the enigma of trying to coordinate the mashed spuds to be ready at the same time as the steak. Is it really possible? I'm beginning to think it's an urban myth. 

The standing: oh the dreaded standing. Gravity is so not our friend. Bob makes standing complex at the best of times but add in actually trying to undertake another task and we can have Chernobyl all over again. If you're lucky you get the shakes while standing at the bench and you get to play the ever delightful Russian Roulette with your fingers and the knives. The more complex the meal the more standing involved and that's just bad. 

The heat: heat. Oh heat. You are my kryptonite. Unless you are sticking to salads or go for the raw-marcrobiotic-vege diet thingy, you have to deal with heat when preparing the meal. How can a beautiful golden mouth-watering roasted potato fill me with dread? Or worse yet why can standing next to the stove making rich gorgeous spaghetti bolognaise make me want to cry? Damn you Heat! (Think dramatic Lorne Green pose right about now). 

The Nausea: oh nausea my moody friend. Bob and Nausea hang out a lot together and they can make for a delightful food preparation time. The smell of food, or some days just the thought, can make you want to vomit. It's an undeniable mathematical certainty. Lets see if I remember the formula, it goes something like this: 

Bob + (end of day exhaustion + standing + heat) (smell/thought of food) = nausea³⁰⁰. 

This can make trying to prepare dinner a bit of a “pesky” chore. 

Ground Hog Day: and perhaps worst of all, even if you do make it through, you know it will all happen again tomorrow, and the next day, and the next and........ Just call me Sisyphus. This is the reality of the horror show that is dinner. 

So what can you do? Legally you kinda have to feed the kids and the husband or you might get a visit from child services or the police. That motherly gene always kicks in to fill us with guilt if we don't provide for our family like Martha Stuart. Damn you Martha and your delightfully presented gourmet meals. I can think of a number of places I'd like to place your handcrafted personalised seating cards right about now. But I digress, here are a few of my top tips: 

The Chair: invest in a chair that'll fit in your kitchen. Simple I know, you feel like a fool that first time, but it's worth it. I have prepared many a meal sitting on a chair next to the stove (and on occasion sitting on the floor). 

Water: guzzle it. Chug it down, before, during and after. Stick an IV in your arm and suck it straight into your veins (well that might be a bit excessive but you get the point). We all know the benefits of water but this is one of those times where we need to amp it up. 

The re-heats: if you find that you have a day where you feel a little better (notice I didn't insult anyone by saying a good day). Make meals in bulk that you can freeze. Things like soup and stews are fantastic re-heated, they usually taste better the next day anyway. They can also be jam packed with vegies so you have the nutritional thing sorted and you can use cheap meats, and lets face it anything cheap is good these days. Even if you're just having a normal cooking day. Double the mixture to freeze the left-overs. Then when those days come, and you know they will, you are set and Mr Microwave can do all the work whilst you lie curled up on the couch. 

Meal choice: this is the one it's taken me a long time to work out (I can be rather slow on the uptake). You don't need to have a fancy new meal every night. Prior to Bob I was a bit of a foodie so this has been a hard lesson. But if you think back to our childhoods, it was pretty much meat and three veg every night and we made it through all right (well apart from Bob, but we'll ignore that inconvenient fact). One pot is the way to go. Stick everything in at once and let it take care of itself. Stews, soups, even roasts are all meals that once the prep is done you have to do very little else. You can even buy pre-chopped vegies these days. However, if you decided that French crepes or risotto are the way to go (and that's your right), then I truly hope you enjoy lying on the gooey kitchen tiles discovering all the little bits of food that have hidden away under your fridge and have formed their own furry colony and are plotting to take over the world. 

Get the Kids to Cook: despite what we were taught to think, kids can do things for themselves and why can't cooking be one of those things. Let face it if they can program an ipod or send a text to 20 people at once (how do you do that?) they can manage to make a meal despite all their protestations to the negative. “But it tastes better when you make it Mum”, I think not, your arms aren't painted on my dearest child. If they are younger then maybe they can help with the prep work, the chopping or mixing. If they are older there is no reason why they can't follow a recipe and make diner for the family. This also gives them a skill for when they leave home. Do we really want them to head off into the world alone surviving on Pepsi and two-minute noodles? It also gives them a sense of helping out when they can't actually help you feel better. It's gives them back a little bit of control and this is healthy for them. Both of my boys cook and I've had everything from scrambled eggs with spinach, hollandaise and smoked salmon to roasted chicken with oregano and tomatoes and homemade strawberry lassi. Now that's better than a restaurant, and no need to gussy myself up. 

The BBQ: The epitome of maledom, the BBQ is yet another way to make dinner preparation more bearable. Let the testosterone fly and let the males of the house light up the BBQ to cook. Pretty much anything can be prepared on a BBQ these days. Even if it is only the meat, it means that all that heat is kept out of the house and that is a bonus not to taken for granted. For those men with Bob I know it can be hard to relinquish the BBQ tongs to those of us in the oestrogen camp but its worth it. And besides you can sit in a chair with a cool glass of water and direct your wife/girlfriend/sister/daughter in the intricacies of the BBQ. We'll even let you believe that we couldn't have done it without you. 

Takeaway: and if all else fails, that's why God invented takeaway. It's ok to have takeaway. We wont burn in hell for all eternity if we present our families with a limp, greasy, happy meal. It doesn't make us less of a parent or wife. Isn't it better to have takeaway and have Mum able to walk tomorrow, than stubbornly persisting with cooking and being laid up for three days (been there, really slow learner). Plus these days you don't have to just go with Maccas or KFC, many restaurants and cafe's also have takeaway/home delivery services, so you can have a decent meal. 

Now I'm not saying I have this all sorted. As I have said I am a work in progress, but I'm getting there. It can be hard to relinquish these sort of tasks, as much as we may have hated them pre-Bob. We're not talking logic here. It's just another little piece of our old lives gone. Another little reminder of the changes that have occurred. But when you look at it with fresh eyes, it's just food. Wouldn't we say to someone else in our position that it's not that important? Isn't it better to be able to spend time with our families than cook a bowl of Martha's famous Cape Cod Bouillabaisse? If its a choice between sitting and watching my kids play sport whilst eating luke warm hot dogs, or sitting at home killing myself preparing a nutritionally balanced, gourmet dinner, it's that botulin brewing hot dog every time. The kids will remember you at their games years down the track, but wont have a clue what you cooked for dinner that Tuesday night in August 2009.

Cheers 
Michelle :)


Okay so the connotation may be a little different but I listen to a lot of Nina Simone, often whilst cooking. And it does mention sugar ;) 

Fashion blogging is not for the faint of heart.

Yes, yes there is a wee bit of pundage in the title of this post. But I tell you, after attempting to try on and photograph four different outfits, it's damn hard work and I am in desperate need of a nanna nap, or medically induced coma.

A few weeks back I was lucky enough to win a $150 Westfield gift card from one of my favourite fashion bloggers, the beautiful and talented Marianne from, Esme and The Laneway. A former London native and now fellow Melbournian, Marianne runs a fantastic fashion blog that matches her incredible eye for vintage with amazing and flawless styling. She also has an enviable shoe collection which I not so secretly, covet. I've followed her blog for a couple of years now and it is a true pleasure, especially on a not so fantastic day, of which I have a few. I am also determined to attempt one of her vintage hair tutorials as soon as I overcome the whole pesky arms above head equals pass out, scenario. Following my post-online shopping high I was silly enough to promise her some photographs of my purchases, hence this sad attempt at fashion blogging.


Being ill fashion often fades into the background, but of late I've been trying to bring it back. It's no longer as simple as buying something just because I like it. Comfort is key. I can't stand tight clothing and I tend to wear light summer clothes even in the midst of Winter thanks to a body temperature set at Sahara. And it needs to be easy to put on. With so little energy each day I simply can't afford to waste that precious resource on simply getting dressed, especially when my compulsory compression stockings already require the energy equivalent of running a marathon to put on. Given that I also continue to lose weight despite my best efforts, this win was very fortuitous as most of my wardrobe is now too big. Even bigger bonus, it was mid-year sales and I managed to get everything for over 50% off.  Three dresses and a skirt. Score!

Okay here goes. Feel free to giggle at the crazy woman in the wood shed and her questionable fashion sense. My homage to Blue Steel and generally being a fool.

Dress: Dangerfield Angelina Dress in Gold.

Stockings: Juzo Soft 20-30mmHg in Chocolate (Summer collection).

Shoes: Tiny store in Singapore many a year ago.

Necklace: Peacock necklace ASOS.

Bracelet: c1930 Green Bakelite clasp bracelet, gift from Mr Grumpy.

Walking stick: From granny aides store, desperately in need of bedazzling. Actually I'd love an antique black stick with a silver Art Nouveau handle, but I'm still on the hunt for one in my price range.

Dress: Dangerfield Walking in the Rain in navy.

Stockings: Juzo Soft 20-30mmHg in Jade (Winter collection).

Boots: Found in back of wardrobe about 10 years old no idea where I bought them.

Necklace: My mum's from the 60's.

Dress: Dangerfield Samantha Dress in Red.

Stockings: Juzo Soft 20-30mmHg in Shadow (Summer collection)

Shoes: Black T-bars, again I've had them for years. Well worn and label has rubbed off.

Cuffs: I've had both since high school, no idea where I bought them.

Skirt: Dangerfield Bunny's in the Band Mini in Black (okay this looked way longer in the picture)

Stockings: Juzo Soft 20-30mmHg in Violet (Summer collection)

Shoes: Plum coloured heels again from Singapore many a year ago.

T-shirt: Threadless Toil.

Cardigan: Just Jeans, about 10yrs ago.

Necklace: Dorothy Shoes, a gift from the lovely Shae of Shae Ecelectique

Photographer: The L-Plater and myself (Blue steel abilities are obviously genetic).

The day's endeavours have taught me many things. First and foremost, it is really really easy to embarrass your teenage son. Simply ask him to take photos of you whilst you do your best Blue Steel impersonations. Secondly, I have all the grace of besser block. My posing abilities are apparently as bad as my breathing whilst standing abilities, otherwise known as "what the hell is wrong with your leg, Mum? It looks like you broke it." In my defence I did put on some small heels, was using a cane, and trying not to pass out, whilst my Annie Leibovitz wannabe told me to "work it, work it" (I see years of therapy ahead). Thirdly, trying to put on and take off four pairs of compression stockings is exhausting. I'm pretty sure I have done a year's worth of cardio today on that simply act alone. Nanna naps are definitely order of the day. Fourthly, my ability to apply makeup has disappeared. This became readily apparent when I applied mascara to my eyeball and right nostril rather than my eyelashes thanks to an errant muscle spasm. Fifthly, do not allow your teenage son try and help you out of the wood shed. Yes his 6'2' frame can lift you but it can also pop or aggravate a disc, OW. Sixth and possibly most important, all of these things add up to lots of laughter and fun.

Cheers
Michelle :)

*I decided to go all Dangerfield as each Westfield store charges it's own postage. So rather than spend $50 just on postage I went for one store and paid $10.

**I should add it's probably not a great idea to try and do a fashion shoot in your backyard when you are already bradycardic. Today is not pretty. But it was fun at the time. Hence my music accompaniment. Little Birdy's, Relapse.

If it's not one end, it's the other.

(photo)

Long time readers will know that my gastric system, decided to give up the ghost last year and I landed in hospital. Since that time I've managed to, if not greatly improve the situation medically, at least improve my acceptance that we may forever be frenemies. However, of late it has been getting worse. Obviously I wasn't paying enough attention to him and he's gotten a bit shitty (pun intended). As such, the frequency of my use of public toilets has increased significantly and my ability to get out is even more limited.

Yesterday I had the joy of sitting in the toilet of the L-plater's dentist, exploding at both ends, whilst grabbing the walls trying not to pass out. He luckily was oblivious and just happy to finally have his braces removed. Though apparently the desk staff did alert him to the fact that I was rather green and stuck in their loo when he did come out. And what caused this delightful hour of my life? Who the hell knows? I haven't changed my diet, lifestyle or meds. I didn't do a heap the day before. I didn't step on a crack or walk under any ladders. For whatever reason it felt a tad fractious and I paid the price yet again. Well so did the L-plater if I'm honest. It's hard to be excited about getting your braced off after 22mths when you're helping your mum to stand and walk in a straight line and then driving her home using all the short cuts whilst she's groaning and holding onto a puke bag for dear life.

Or there's last week where we had to drive the 10 minutes to the next town to pick up the youngest and we stopped not once, but four times on the way there and back. Admittedly, two of those times were aborted because a) the Victorian National Park Service decided to lock the public loos stating they didn't have funding to keep them clean. This was clearly evidenced by the fact that the one unlocked loo in the park was craftily decorated with fragrant nard sculptures by some arsehole. It sure made those treefern covered hills look tempting. And b) we drove another two minutes to the soccer oval on the outskirts of the town to find that they too were locked. At which point a tear may have been shed and the idea of simply dropping my granny undies where I stood was looking pretty darn good. Who the hell locks public loos? You people should be shot, or dosed with laxettes and let loose in an area where every public loo in a 10km vicinity is locked. How'd you like them apples? Eventually, we found unlocked loos in the town centre. As I sat there on that paper coated, bent and broken loo seat doing my best Mt Vesuvius impersonation, I may have said a prayer of thanks to every deity known to man for being open and sans nards. After picking up the youngest from his drama class we headed back to the same loos only to find someone had power spewed over the bowl, floor and walls and I was forced to use the men's silver bowl of foulness. Even with a Brazillian rainforest worth of loo paper covering that icy (it's Winter here in Oz) metal bowl it was only my desperate need that made me sit. And as I sat there abluting with gusto in that breezy, moist and fragrant Petri dish of humanity I thought to myself, "self, you are truly living the dream". 

And such has been my life of late. Admittedly I am well overdue to go back to Gastroman. Last time he told me there was little left for me to try except for one med that was so far out of my price range as to be inaccessible. Add to that I have had so many other specialist appointments, a son with knee surgery and ongoing rehab, and just a general unwillingness to have yet another invasion of my orifices by a complete stranger, and seeing Gastroman has sort of slid down the list. 

Logical me knows I should go back. Today for instance I am plied with meds and yet cannot keep even water in. I feel like I am permanently on the edge of yet another power spew or fire hose trots. It makes functioning rather difficult. Big props to my mum today though. When mid phone call I sort of screamed hysterically "I have to go and thrown up" she didn't bat an eyelid, just a quick, "I'll let you go, so you can throw up in peace" and she hung up. Go mum. It's times like these that you need those around you to not ask questions or get in between you and your porcelain lover so you can just focus on the task at hand, no matter how unpleasant it may be.

It's funny what you take for granted in life. Years ago I never thought much about going to the loo and I'm sure most healthy people don't. Now, it is an ever present thought in my life. If I am to leave the house I have to plan where I'm going by loo availability. I also carry emergency loo paper, towels and underwear. It's hard not to get depressed about it all really. 

I know my parents and in-laws are little horrified with my openness about this issue. But lets face it I'm not alone. I also know it's not an area where you'll find much discussion in the Dysautonomia texts. It might be in the lists of possible symptoms, either constipation or diarrhoea, but there is little about what it means to actually live with the issue. It's not as simple as too much movement or not enough. It's the fact that tonight I can't drive my son to footy practice as the chance of exploding in the car is too high. It's the fact I am forced to use foul public toilets which others treat like an abhorrent ablutory free-for-all. It's the fact I can't leave my house to go shopping yet again because my bowels have other plans. It's the fact that the simple act of standing can be the only thing I need to trigger yet another gastric apocalypse. Buns of steel, and a perky can do attitude just don't cut it when your digestive system is broken.

So there you go. The saga continues and I am stuck in the batcave once more. standing and walking is a bit of a death defying act thanks to shakiness and weakness. Given it all leaves you pretty exhausted I'll no doubt sleep which is always a bonus (though the waking up with a mouthful of vomit is less desirable). No doubt my dreams will feature the things that need to be done to the people who lock toilets or act like foul pigs just because it is a public loo. 

Hmmm given that I'm space-cadeting today I wonder if I should push post, oh well. Sorry if it's a little rambling or incoherent.

Michelle

PS don't forget to leave your questions on Question Time, and I'll endeavour to answer them at the end of the week.

Now because I know there are others in the same boat I thought I'd re-share a little ukelele song that the truly lovely Elly from Bugginword did for me after my hospital stay last year. Every time I listen to it, it makes me smile and I hope it makes you smile to.

Question Time

(photo)

Hey guys, I thought I'd open up the floor to answer some questions. I get a lot of emails asking me all sorts of things from, how did I get diagnosed to my favourite salty snack, or how to talk to doctors, or even how to start a health blog. I reply to as many of these as I can (sadly not all thanks to sheer numbers and the ever present fatigue and poor health we are all dealing with), but that's a one-on-one basis. Often, after the fact I think the question, and answer, are one many could benefit from and I should do a blog post. Of course, seven seconds later I've forgotten that great post idea (thanks bright shiny objects) and the post is never written. So I thought it was about time I rectified things with a little Q&A session.

So, what questions do you have and what do you most want to know about?  Me? The blog? Dysautonomia? Doctors? Lemurs? Quantum physics? Whether I'm a Sam or a Dean girl? What I'd name my direwolf? The political situation in Nicaragua? Whatever. I can't promise I'll have an answer. I can't promise the answer will be coherent, or even on topic. It'll probable feature the number 42  frequently. But there'll be an answer.

So,

What do you most want to know?


Just write your questions in the comments section below.

NB: I'm not a doctor and any medical questions/decisions need to be discussed with your treating physician. I can only share my personal experiences. As we all know Dysautonomia often has a very individualised presentation and often what may work for one of us, may not work for everyone. 

Michelle :)

When your song choice has to be related to questions, you can't go past The Clash, Should I stay or should I go? (1981). Which I may or may not have belted out at the top of my voice at more than one bar over the years. Along with The Angels, Am I Ever Gonna See Your Face Again?, and pretty much anything by the Violent Femmes.

The Zombiefication of a Rusty Hoe.

Living with chronic illness has many downsides. Lets face it dealing with the day-in and day-out of doctors, drugs and symptoms is not what dreams are made of. But it also has another side. For me being chronically ill has in a sense made me feel freer. Sounds bizarre I know, but it's true. My life is not what it once was. In fact it's been turned upside down, inside out and I'm still not quite sure where, or if, it has landed. But what that means is, all bets are off.

My body is on the decline. Something that has become far more apparent over the last year. As I mentioned in this post, that realisation gives a certain level of release. Instead of thinking of all the reasons not to do something, I give myself permission to say "Go for it". In many cases it's small things like sitting on my couch wearing my Dorothy shoes because they make me happy. Or wearing my bright purple compression stockings with shorts and sparkly silver flats to the doctors. Or even wearing a pink feather boa in my profile picture. Because at this point in the game, doing things that make me happy is far more important than worrying about what others will think. 

This past month I took this to a new level and had the time of my life. Most who read this blog or follow on Facebook know of my love of zombies. It's nothing new. I've loved horror movies since I was kid and experienced my first Sam Raimi movie, in the form of The Evil Dead (1981). But of all the genres, zombie flicks have always had a special place in my heart. If you haven't seen George A. Ramero's Dawn of the Dead (1978), well you just haven't experienced a decent zombie movie. Mind you I am also partial to a really bad zombie movie like Dance of the Dead (2008) which comes complete with a zombie prom attack and zombie make out session, oh yeah. And on a more recent level, Zombieland (2009), never fails to crack me up and is my fall back movie when I need a good laugh.

These days, Dysautonomia means I have a lot in common with zombies. I often slur and groan. I am known to stumble and lurch when I walk. My skin varies between grey, deathly pale, slightly green and the ever present purple blotchiness. Add in that my cognitive skins are often on par with those of a used piece of chewing gum and well, I may just be one of the walking dead. Luckily, in May, I was able to embrace my zombie self and have some of the best fun I've had in a really long time.

A while back the Universe shined a little zombie shaped light on me, and I won a photo shoot with the lovely and talented Georgia Laughton from Logicbunny Photography.

I don't even know where to begin in telling you how much fun I had. So much in fact, that I couldn't keep the grin off my face and as Georgia pointed out, I was the world's happiest zombie. I even got to share it with my bestie Kerri, who not only drove me, provided moral support and laughed with me, but was totally unphased that we drove home with me in full make up so I could freak out the kids. That, dear readers, is a good friend.

I wish everyone could do it. It was a little out there (not often you walk into a house and see bloody hand prints and BRAINS scrawled in fake blood on a wall), a little weird, a little bit theatrical, a bucket load of fun and just the escapism I needed. I don't even care that I spent the next week recovering in bed. From the initial pre-photo questionnaire (who else ever thinks to ask who your favourite super hero is?) to the fact that Georgia had taken into account that I might need to lie down, or need breaks, or water. To giggling whilst the talented makeup artist, Jade, splattered me with fake blood. Or just being made to feel comfortable in my weirdness. I simply had a ball. And as someone who normally hates to have their picture taken, I'll have to say it's a real tribute to Georgia that I was so busy having fun that I forgot to be self-conscious and just went with it (ANTM watch out!). If you are ever in Melbourne, Australia, I can't recommend the whole experience highly enough. 

The make up stage took about an hour. Jade went to town with the blood and pasty white skin, with  amazing attention to detail. It looked fantastic. And the question you all want answered, the taste of fake blood?, somewhere between  rancid aniseed and arse. Mmmm yummy.

(Who knew I could be even more pale?)

Now for a couple of the fabulous pictures. If you'd like to see more of Georgia's work check out her site Logicbunny Photography. Check out the picture of the tutu and roller-skating zombie doing the splits. I believe that may be my favourite of all her pictures.

 (Eating all those brains makes for a sleepy zombie. And yes those are my Dorothy shoes you spy there.)

 (Mmmm yummy severed hand, what more could a hungry zombie ask for?)

 (Oh yeah sexy zombie pin up. Luckily you can't see the shaky legs or see me swaying side to side.)

(Mmmm brains)

(Giggling, happy Zombie)

(The lovely Jade left, Georgia right, and myself)

It was a long day, but I treasured every minute of it. I rarely get out of the house these days simply because of the time it takes for me to recover. Not to mention the joy that if the trip is more than about 20mins, I end up having to stop and explode at one, or both ends, in a public loo or nearly pass out (it's a sexy life). So when I do go out I want it to be worth it, and this really was. It's hard to explain to someone who's not ill, but to be someone else for an afternoon and just not be the sick person, well that's precious. The whole afternoon was the antithesis of my normal life and I am grateful for the opportunity. Big thanks to Georgia and Jade, for being lovely and fun, and creating a brilliant experience.

I know doing a zombie photo shoot is not everyone's cup of tea (my parents and siblings are questioning if I was swapped at birth, Mr Grumpy and the boys are more used to me), but I hope it inspires others to step outside of their comfort zones and find their own version of a zombie photo shoot. So many of us have a secret something that we've always wished we could do, or perhaps more importantly something that only our worries of judgement are preventing us from doing. Well, you know what? You can do it. The only person stopping you, is you. So dye your hair purple, dance in the store because your favourite song came on, try an oyster, take that painting class, go to Comic Con, or plaster large photos of yourself dressed as a zombie on your loungeroom walls, whatever it is, just do it. Because you never know just how much fun (or movie blood) is waiting for you.

The Zombiefied Michelle :)

*For those new to the blog the origins of Rusty Hoe are as follows:

"I was named Rusty Hoe by my delightful family.  One night around the dinner table, we were discussing how I had devolved from the brains of the family to not the sharpest tool in the shed.  Mr Grumpy, decided that not only was I not the sharpest tool in the shed, but I was the rusty hoe left out the back of the shed.  Whilst it took Mr Grumpy a while to catch on to what he had said, the monkey boys burst into fits of laughter at their father's faux pas.  What will be the salient moment my children will recall from their youth?  That their father called heir mother a 'hoe' at the dinner table".

The musical accompaniment is easy for this post, the only toss up was whether to go with something by Rob Zombie or The Cranberries, Zombie (1994). The Cranberries win on sentimental grounds as I used to listen to this when I was pregnant with the L-plater all those years ago.

Happy 19th Wedding Anniversary, Mr Grumpy!

I've always done things a bit differently. Whilst most of my friends were at uni, travelling or partying I took a different path. At 17, I met Mr Grumpy. By 19, we were engaged. At 20, we were married. At 21, I gave birth for the first time. By 25, I was a mum of 2. The media tells me this is wrong. That we are doomed to fail. Yet today as I type Mr Grumpy and I are celebrating our 19th wedding anniversary. 

(Good lord we were young)

I know we're lucky. Particularly, with me being ill. Divorce rates are bad enough, but add in illness or injury, and divorce rates sore. I am grateful everyday, when I read about the marriage breakdowns on the forums, that Mr Grumpy is by my side. I don't know if I could do this every day without him.

He's not just my husband. He's the father of my children. My lover. My best friend. And now my carer.  As corny as it sounds, he is the love of my life.

That's not say, it's all been beer and skittles. We've had ups and downs, and fought like cats and dogs. But in the end, and when it really mattered, we've always been there for each other.

The past six years that I've been ill have changed and tested our relationship in many ways. I'm not the person I was before. I know I'm damn hard work at times. Our plans for the future were turned upside down and life went into free fall for a while. Illness does that. It changes you emotionally and psychologically. it challenges your relationships with the ferocity of a pit bull. It changes you both mind, body and soul. Nothing can prepare you for the reality of that challenge.

And yet despite it all, he goes out of his way to make me feel loved and cherished. He looks at me like I'm still 17 and makes me feel worthy and special, even when I feel it least. Whatever has happened during the day, no matter how sick I am, when he holds my hand as we go to sleep I never fail to feel safe and loved. What more can you ask for?

So happy anniversary Mr Grumpy. The road may not have been quite so straight as we planned. And there may be a bucket load of pot holes. But I am glad you are by my side as we stumble along.

I have written about Mr Grumpy a few times over the years. He's a pretty good guy when it comes down to it.
Chick Flick Moment
You Get Less For Murder
Twenty Years

Michelle :)