Question Time

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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 :)

"Should I go to the ED?" and other dumb questions I ask myself.

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Yesterday was a bad day. And a bad Bob day is not a day I would wish on anyone else. On reflection I should have gone straight to the ED. Hell, even today my vitals are probably still worthy of a check. But no, I sat (read: flopped, clutching my chest, going a delightful shade of grey) on my couch and ummed and ahhed about going to the ED.

Why oh why do I do that? If anyone else told me their heart rate had dropped to 40 and their diastolic had jumped up to 113, I'd be straight onto 000 calling an ambulance. The fact that this didn't change in the slightest for about 2hrs was still not a reason for me to head into the ED. At this point even I can hear the lyrics to Smash Mouth's, Allstar...

She was looking kind of dumd with her finger and her thumb. 

In the shape of an "L" on her forehead.

...playing in my mind.

And it is stupid. I can admit that today. Yesterday, not so much. Oh sure there was that little voice screaming at me to go straight in but I silenced that quickly with a big ball-gag of denial. Instead I rode it out. I drank my body weight in fluids, wept a couple of tears in the privacy of my bedroom, and deluded myself that getting my heart rate back up into the mid 50s meant I had over-reacted earlier.

Someone once told me the world is gonna roll me

I ain't the sharpest tool in the shed.

The conversation in my head went something like this:

It's just a dip. The switch will go off and it'll stabalise. Okay so it's going on a bit longer than I expected. But it does that every now and then. I'll see if anyone has any tips on Facebook. I know everyone is saying go to the ED but I'll give it just a bit longer. Hmm that chest pain's a bit intense. Wish my neck and left shoulder weren't aching so much. Probably just a strain though. I'm obviously over-analysing things. Maybe I should give my inlaws a heads up that I may need to go in? But I know they'll worry. I can't deal with worry. I'll just keep and eye on it. Damn I feel crap, but sure as eggs I head into the ED it'll start to go up and they'll look at me like a hypochondriac. Plus the wait. Ugh. I hate the wait. Plus the germs from all the other sickies in there. I don't need another infection.  I'll just wait it out. Damn heart just stop with this stupid pain business. Ooo look my heart rate has nearly hit 50 I'm improving! No point going in now. Anyway, I really don't want to go through the whole explanation thing AGAIN. The hassle of the ED just isn't worth it. How do I explain that my normal is abnormal or that my abnormal looks normal? Or that there is a huge difference between lying and standing obs? Might as well try and hold an octopus into a string bag. It's just as futile. 50's not bad anyway. I've had worse. And my cardio is on holidays so they can't call her. Plus Mr Grumpy's away and the kids need to get to school. And the dogs will go ballistic alone in the house all day. I can't afford to stay overnight if they do find something. It just wont work. Too much hassle. I'll just drink some more and maybe sleep for a while....Look I made it through the night. I OBVIOUSLY didn't need to go into the ED after all. Harden up, Princess. Bloody drama queen.

Yes. The dumb is strong in this one.

But that's how it works in this deranged old mind of mine.

When you are sick 24/7 your idea of what is ED worthy becomes skewed. My everyday health especially my heart rate and blood pressure would send average healthy folk running to the ED. Basically, I live in 000 (the emergency number here in Oz) territory 24/7. If I went every time it bottomed out or went too high, or I lost feeling somewhere, or it felt like someone was forcing a railway spike through my head, or any of the other daily crap I deal with, I might as well just set up a little camp site in a corner of the waiting room as I'd simply never leave. Overtime it's become harder and harder to discern just when I should worry. Even talking to my cardio about this very issue a while back, she was hard pressed to give me guidelines as to when I really should go into the ED. And stupidly I always think of the ED as a place for people who are really sick, not when your sick is just an extreme of your normal sick (I really need to be studied for my high level of stupidity).

Add in that a trip to the ED is also a crap shoot. The chance of getting a doctor who understands, let alone has heard of your condition is slim. Trying to explain the complexities of your health and why the vitals or bloods they are getting aren't good is often an exercise in futility. Will they believe you? Will they call for a psych consult? Will I even be in a fit state to articulate any of it. Lets face it EDs aren't designed for complex conditions. If it bleeds or it's broken they are great, but when your needs are complex it can become a nightmare. I do respect those who work in the ER. It's not a job I'd want. Having a sister who used to be an ED NUM I know only too well what she has put up with over the years. And I understand I am complex. I still remember the look on the poor registrars face when I did my last disc and she was asking me about the sensation in my leg. Widespread neuropathy does make it a little hard to assess. Needless to say she ran off to confer with the consultant a bazillion times. In reality it's hard work on both sides of that breezy hospital gown. But all of it ends up with me preferring to dig my eyeballs out with a rusty spoon than go to the ED for treatment.

Add in the responsibilities of children and families and all that malarky, and I end up with a conversation of stupidity running through my mind every time.

Plus I'm tired. Really, really tired of this sick business. I actually can't recall the last time that I felt well. I can't recall when I didn't hurt, or feel nauseous, or dizzy or all the rest. And that kinda sucks. And I am over doctors and tests and all the other medical paraphernalia that you have to deal with when you are living with a complex chronic condition. Makes me a bad patient and my own worst enemy at times.

Now if ED doctor's looked and sounded like Dr Kovac on ER (does that show my age?) well I may just change my mind about ED visits. Because even a crappy "it's all in your head" would almost be worth it spoken in his delicious accent. Maybe I could put that in the hospital suggestion box?

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Back to bed I go.
Michelle :)

Given how extra exhausted and brain deficient I've been the last few weeks, maybe month, I do now wonder if I am living more in Bradycardia. I don't usually take my readings unless I'm particularly crap or something changes so not sure. May be time for some more regular readings. 

Compression stockings: From beige to brilliant.

After multiple requests for information on where I purchased my colourful compression stockings I thought it was time to do a post.

(This is Jade, from the Juzo soft Winter range. 

More green in really life, but as you can see goes well with my girly floral dress from ASOS. 

You'd never know they are actually medical grade compression stockings.)

I should add this is not a sponsored post (mind you I wouldn't knock one of those back. It would be nice to be able to pay for my own coffee just once). Nor is it an exhaustive list of brands and options. Instead it is a starting point, based on my personal experience, for those considering compression stockings for the first time, and those tired of the regular range of stockings and looking for a bit of spice and colour in their compression wear. If anyone knows of any other brands offering a bit of fashion let me know and I'll update the post. Your treating doctor should be able to advise you as to whether compression stockings may be helpful for the management of your form of Dysautonomia and the strength and type of stockings you may require.

One of the most common recommendations to help manage Dysautonomia is to use compression garments, in particular compression stockings. As a woman in her 30s having to wear something that is more associated with the elderly is rather disheartening. It is even more disheartening when you start looking for a pair and find that the majority are rather unattractive shades of beige. Oh, you can get your hands on white or black and occasionally a navy, but that is about it for the majority of brands on the market.

Why do so many of these companies think that a) only the elderly or post surgical patients wear these products and b) that if you require them you must automatically lose all fashion sense? Even as a granny I'd want to rock some sexy legs. Illness and infirmity are bad enough without adding dowdy to the mix.

Luckily a few companies are now starting to realise that there is a huge untapped market of patients who want to feel attractive as well as prevent cankles and pooling. Whilst the market is improving there are still few companies who provide even a semblance of fashion sense for higher strength compression hosiery.

But before you get to purchasing your compression stockings there are a few things you need to consider.

1. What length do you need?

Compression garments come in a variety of lengths. At their most basic these are: waist high, thigh high and knee high socks. Waist high is most commonly recommended and what I started with. (Waist high ones do have the added bonus of working like Spanx and give you a perky bum and smooth out your saddle bags.) However, if like me you have chronic gastric issues and permanent abdominal pain, waist high stockings can be incredibly uncomfortable. I now choose thigh highs simply for the comfort factor and find that they still make a discernible improvement in my ability to function and remain upright.

You can also find toeless and footless compression stockings. Great if you want to wear thongs (flip flops for my US readers) in Summer. My only word of caution would be if like me, you have significant pooling issues and poor vascular flow, you can end up with very fat, very purple toes hanging out the bottom of your stockings. Not the most attractive look, or the healthiest option for your toes.

If you choose thigh highs or other non-full length options be aware that the band that holds up the stocking can be made from a range of products including silicon and latex. If you have allergies this may need to be taken into account.

Whilst this post is specifically about compression stockings it should be noted that there are also abdominal binders and a range of upper limb garments (love the fashionable range of full sleeves and gauntlets from LympheDivas and wish they did stockings as well, plus they now have an Australian distributor) which may be useful if your pooling extends to the upper body, and full body compression suits, similar to the G suits favoured by pilots.

2. What strength compression do you require?

Depending on your level of pooling you may require different levels of compression. Your treating doctor will be able to best advise you on the strength you require based upon your particular medical situation.

Compression levels are measured in mmHg which refers to millimetres of mercury. (One millimeter of mercury is approximately 1 torr, which is 1/760 of standard atmospheric pressure.)

For some, sports compression garments such as Skins may suffice. These are easily accessible both in store and online and may be a good starting point for those tossing up whether or not, compression garments may be for them. One thing to consider with these type of garments are the multiple seams in the structure of the garment. Whilst for many this may not be an issue, if your vascular flow is particularly poor or your skin is sensitive, these seams can leave bruises and sore spots, something I found out the hard way.

If you only need a small amount of compression (eg 15-20mmHg) there are more options available. For example, the UK company Happy Healthy Legs offer a range of lower strength fashionable compression stockings in the 15-20mmHg range. Other companies such as Rejuvahealth and Juzo also offer fashionable compression hosiery in this range.

Moderate strength (20-30mmHg) fashion options are available from both Rejuvahealth and Juzo. This is really the minimum strength recommended for Dysautonomia management.

Juzo were the only brand I came across that had higher strength (30-40mmHg) colourful compression stockings. Whilst there are even higher strength compression stockings available I haven't been able to find any that come in either bright colours or patterning.

If you want to compare a wide range of brands (more than I can cover in one post) and stocking types Compression Stockings.com is definitely a great starting point. I use them and it is also the company that I've heard the most positive feedback about from fellow patients.

3. Sizing.

Every brand has their own sizing. Check out their sites for instructions particular to each brand. If possible get someone else to measure for you. When I purchased my first pair of waist high Jobst stockings the pharmacist did the measurements. I had no idea how many they needed to take for accuracy. The tips I took from that early experience are: measure both legs separately (some people have one legs that is significantly different from the other) and measure twice or even more. I've also found that if your measurements cross over two sizings it pays to get the smaller size. With time and frequent use there will be some stretching.

Here in Australia if you are purchasing stockings for the first time and are unsure, most local chemists will be able to size and order them for you.

4. Cost.

Medical compression stockings are expensive. Pay with a kidney or first born son, type of expensive. So you want to work out exactly what you want and get your sizing right. Additionally, when buying certain products eg some of the Juzo soft coloured range, they are dyed for individual purchase and have a no refund or return policy.

Depending on your country of residence and insurance company, you can request a prescription from your doctor for your stockings and claim a set number of pairs under your insurance every year.

For those outside the US or UK you also need to factor in the postage when purchasing stockings online, and this can vary widely. For example, UK company Happy Healthy Legs charges a flat fee of £10 for international purchases, US company Compression Stockings.com which sells multiple brands and is a great starting point (also great customer service from my dealings with them), charge around $5 per item postage to Australia, whilst Rejuvahealth, also from the US charge a highly prohibitive rate of $39 for postage to Australia (I did contact the company about this, but they were adamant they were unable to make postage cheaper).

I would say that cost is indicative of quality when it comes to compression stockings. In the long term it can be more financially sound to buy one pair of the expensive stockings than to buy 10 pairs of cheaper versions that lose their compression quickly or have poor or haphazard compression.

5. Comfort.

Compression stockings, fashionable or otherwise aren't always comfortable. They are hot, which is one reason I put off wearing them for a long time. When your body temperature is already set at Sahara they can be stifling. Having said that, I do find even going to thigh high did help lessen that somewhat, and they are fine in the cooler months. Sometimes you have to weigh up the heat factor with how much of a difference they can make to your functioning.

They are hard to put on and it can be exhausting, especially when you have weakness and fatigue. There are devices you can buy to help with putting them on, most companies selling compression stockings offer these. There are also multiple how to's on the Internet and YouTube.

Once on I find I don't really notice them anymore. Especially when you are wearing them every day you get used to the feel.

6. Care.

Caring for your compression stockings is easy. You can hand wash them and then leave them in a warm shady spot to drip dry. Or if like me, you have minimal hand strength, simply put them in a lingerie bag and pop them in the washing machine on the delicates/gentle cycle.

To avoid snags when putting them on, remove or cover rings and check for sharp edges on nails.

7. Now to the most important part, fashion options.

Personally, I've been buying the Juzo Soft colour range from Compression Stockings.com. Their range do change based on the Northern Hemisphere seasons, and there is no guarantee that the same colours will be available the next season. If you are purchasing from Australia allow about 3 weeks for delivery of the coloured range eg violet and fuschia. Other traditional colours such as chocolate and shadow, are roughly a week from order to delivery. I now have cranberry and jade (from the Winter range) and chocolate, shadow and violet (from the Summer range) and am really happy with the vibrancy of the colours. They have been really well worn and washed repeatedly, and the colours have maintained their vibrancy and compression remains unchanged. They are a little long in the feet (I have tiny feet and long legs) but with some careful adjusting I can get them to sit and compress properly. This range is also one of the few that goes up to 30-40mmHg.

 (Love my new violet stockings from the Juzo soft Summer range.)

(Cranberry, from the Juzo soft Winter range. I wear these all the time.)

I love the Rejuvahealth range, and if I lived in the US would buy a few pairs. Who hasn't wished for some bright purple paisley compression stockings?  Or vintage lace? Their highest level of compression is 20-30mmHg. I don't have personal experience with these, so if any reader has, and can give some idea about quality and durability that would be great.

(photos from Rejuvahealth)

I have wondered about dying a pair of traditional beige or white compression stockings. I'd love a tie-dyed pair in funky rainbow colours. If anyone has tried this or has any suggestions on how to do this please let me know. (see Juzo soft tie-dyed in Update below).

Or, if it's possible to add some small appliqué to add detail, without messing with the compression?

So there you go. A small starting point to finding some fashionable compression stockings. Hopefully more companies will come to the table and offer more fashionable options, not only in stockings but other devices that the ill or disabled require. We may be unwell but we still want and deserve to look fabulous.

Cheers
Michelle :)

NB: I have also purchased compression stockings from Jobst in regular black and they too are a great quality brand. The have maintained their compression and look good as new even after 2yrs wear. 

Update: Juzo Soft now do a fabulous range of tie-dyed stockings with either colour background white pattern or black background coloured pattern. I purchased a scarlet with white pattern earlier this year and must say I love them. 

Update: Chic Compressions are now doing  Mediven swarovski crystal encrusted compression stockings (highest rating 23-32mmHg) with a choice of 13 and in 3 crystal patterns, Opera, Fanfare and Symphony (shown below). A little on the pricey side but fantastic for that special occasion. So for example if I picked Size I, thigh high with lace top, in vivo, with fanfare crystal embellishment it would cost £117.50 ($209.75 AUD) not including postage. So really only a special occasion eg wedding stocking.

 (Fanfare)

 (Opera)

(Symphony)

Svigardis also have patterned in higher level compression. For example: Allure Patterned Thigh High 20-30mmHg in Indigo below.

And you can't talk about fashion without a bit of classic David Bowie.

Onomatopoeia

Is there a word to express the last few weeks? Nope nothing that does it justice. It's just been one thing after another and 'Ugh' seems about as close as I can get. One of my favourite bloggers, the awesome Kelley, from Magnetoboldtoo, wrote a post about onomatopoeia a while back and it's stuck with me. Sometimes life can really be best described as a collection of ughs and oomphs and blarghs.

I coud regale you with the crapfest but that would bore you silly, I know it bores the crappola out of me. Drama sucks. Fatigue bites the big one. Because I'm a champ I even managed to combine that with yet another bout of laryngitis (is that the 53rd or 98th time this year?) and even buggering my right hand, kneading dough of all things. This has meant little in the way of brain functioning. Little in the way of responding to comments on blogs, or FB or Twitter. Little in the way of standing, or personal hygiene (luckily we had a rat die under the floor boards, or in the wall, the stench is too strong to pin point, so Eu de Dead Rat, trumps any personal miasma I may be generating).

Yesterday, I reacted maturely to my situation by sitting in the garden in the misty rain, sipping coffee, in my pjs and red, sparkly flats. It was my "FU Universe" moment. Today's body tanty would suggest that that was probably not the best plan of action when recovering from a bug, but it was good in the moment.

So on that note I shall return to the batcave and hibernate until the world is filled with rainbow farting unicorns and glittery cup cakes and margaritas with little umbrellas served by hot cabana boys, once more. Or till the meds kick in.

And because my dogs amuse me and the look on their faces is priceless.

Michelle

I've been listening to Florence on loop this past week. This may come close to trumping Dog Days are Over as my new shout it out song.

Can we leave the drama for The Bold and The Beautiful?

(source)

Wee bit of a ranty post ahead: you've been warned.

Being chronically ill is hard. Unless you've been unlucky enough to sucked into the vortex, it's hard to explain just what a struggle it can be at times. Being ill 24/7 for years on end takes it's toll physically, psychologically, socially and emotionally. It is unrelenting. All of us who tread the path know this and we know just how hard we have to work to maintain a sense of self and happiness along the way. It doesn't even matter what's your poison. We are united by the simple fact that this shit is hard.

Support is vital. We look for it from our loved ones, but often it is only with others treading the same path that we can find true support. There is a shared knowledge that doesn't need to be spoken or explained. Support groups and forums have popped up everywhere. The advent of FaceBook and Twitter have allowed for the development of communities that span the globe. Got a rare or obscure disorder? Don't worry, there is a guy in Azerbaijan who also has it and thanks to the wonders of the internet you can commiserate and laugh over the joys and challenges of life with your particular issue.

As patients we are frequently vulnerable and exhausted. Being sick, especially when you are new to the game, can be a very scary place. We need support and a safe place to discuss the often confronting physical and emotional issues that we deal with. Online support groups and forums fill an important void in the medical system, where housebound and often geographically distant people can come together to find knowledge and support. They have many fantastic attributes.

But there has been a perceptible change in the functioning of many communities. Maybe it was always there, but these days it's become far more visible thanks to the immediacy and inherent anonymity of the internet.

Drama. 

Drama in the form of illness oneupmanship as so elegantly described by Carly Findlay over at Tune Into Radio Carly. Where patients try to out-sick one another. And the winner is in truth the loser, not that the participants can see this. 

Drama in the form of judgement (check out Claire Foust Martin's post over at Stop POTS Virginia). Judgement in the way you handle your illness, your treatment choices, or your philosophies. Patients attacking patients, carers attacking carers, it can be truly disheartening.

What is being achieved by this? Why as patients aren't we calling each other out on this bullshit?

As patients, or carers, many of us have seen the worst of the medical system. A system often populated with doctors who either don't understand, are dismissive or in some cases, are outright hostile. A system where there is a lack of research in under-recognised disorders, like Dysautonomia. A system not set up to deal with complex and chronic conditions. Where money talks and where treatment and diagnostic options are often non-existent.

Many have seen the worst of those who we thought were friends or family. A lack of understanding and judgement. People who walk away, or talk behind our backs. People who leave us high and dry when we need them most.

And now we are set at tearing ourselves apart piece by piece, because we don't agree with what someone else says or their treatment choices. 

STOP IT!!!!!

The reality is that my treatment choices don't affect anyone else. Nor do anyone else's affect mine. As individuals we have the right to make choices that suit us based on our individual presentations, beliefs and life circumstances.

If a fellow patient chooses traditional Western medicine to treat their symptoms, that's okay.

If a fellow patient chooses alternative or complimentary medicines to treat their symptoms, that's okay.

If a fellow patient chooses a variety of methods, or no methods, or chooses to stick crystals up their arse and bark at the moon, THAT'S OKAY.
I may not agree with their choice, but I'll sure as hell support their right to choose.

It doesn't affect me and it doesn't affect anyone else but that one person. Why are we so concerned with what others are doing? And more importantly why are we so invested in telling them they are wrong?

It is possible to suggest alternatives, to point out concerns with a particular treatment, to disagree and choose different paths, in a respectful manner. Disagreement is a good thing as it makes us all re-evaluate our positions. It may open our eyes up to alternatives we've never considered or it may reinforce our original position. But do it with respect.

Share the information and let others decide if they want to follow it up.

Do not send multiple emails demanding the person tries a particular treatment.
Do not decide that their reluctance or choice not to take up that treatment means that they either don't want to get well, or aren't as sick as they 'claim'.
Do not tear them a new one on a thread because they disagree. You may be right, but your method and tone serve only to drive people away.

For example: Just because you don't believe in or use Western medicines doesn't give you the right to write "maybe when some of you have kidney failure you'll wish you hadn't take some of them" and it sure as hell doesn't sell your own position. It smacks of judgement and a lack of compassion. Concern for the well being of fellow patients is an honourable trait, but can be written with a very different and supportive tone. (This isn't a post for or against any particular treatment option. I've seen equally callous responses to those who follow a more alternative path. In either case, it is appalling behaviour from adults).

We are better than this.

If you make an informed choice in the form of humour, religion, diet, exercise, medications, meditation, supplements......or any combination of things to deal with your illness that's okay, and no one has the right to tell you otherwise. 

We all have the right to choose what works for us.

Aretha was onto something when she sang about R.E.S.P.E.C.T, because that's what it is all about. 

Life is too short and this shit is too hard to add this level of drama to our lives. It is unnecessary and it is something we can choose to stop.

Support does not require agreement. And difference doesn't instantly equal bad. And manners cost absolutely nothing.

Being ill isn't a competition and no one has all the answers. But what we can do is support each other through the tough times. We can provide a shoulder for those in need, laugh at the absurdity of life and rejoice in the small successes we can achieve. That is a far more rewarding and positive way to spend what little energy reserves we have. We shouldn't need to add a Code of Conduct at the top of a group that says: act like an adult, use your manners and don't be a dick.

When we leave this world, we all need to decide what we want as our legacy. Do you want to be Right at any cost, or do you want to know that you made even a small piece of the world a more compassionate and better place.

Time to actively bring back the support to support groups. Six years down the track I am still friends with people who I met in online support groups early in the piece. They have made this experience bearable and they are family. I want others to have that experience. That gift. Because I know how important it is.

So if your name isn't Ridge or Brooke, and you haven't accidentally slept with your husband's best friend, who is really your long lost half-brother/cousin/uncle/dog walker/mysterious European prince. After eating hallucinogenic berries whilst castaway on a desert island, following a mysterious yachting accident, set up be said royal, dog walking, blood relative, leave the drama for the TV soaps.

Michelle:)

Biting the Bullet: Wheelchairs and Donkey Balls

(Meet 'Bernice')

Yep, you read that right. I sucked up my pride and finally got a wheelchair. Well, it was actually more a case that my family sucked up my pride and purchased one on my behalf. Even my mum rang me to let me know that they were for sale in a local catalogue. Woofrickenhoo. Seems they all got sick of my stubbornness over the issue and it was time to have a mobility intervention.

Apparently it's time. Apparently it makes sense. Apparently it's all very practical and grown up.

Apparently I must put on my big girl undies and be reasonable.

Well screw that.

So far my kids have enjoyed using it to do wheelies on the road out front.

Me? I've mostly managed to avoid looking at it as I head out the front door. And kicked the wheel and called it an arsehole. Because I'm mature like that. (sigh)

But the reality (is there a suckier word around?) is I do need it at the moment (yes I said 'moment', because in my delusional head this isn't a forever thing) if I have to walk more than about 50m.

Okay, so maybe the other day when I went with The L-Plater in search of size 14 footy boots, I may have said, out loud, that perhaps we should have put it in the car. Well wheezed it, in between panting and leaning on him for support as I stumbled from the car park to the shopping centre entrance. Maybe. But if anyone brings it up I'll deny it till I'm blue in the face.

For new readers here's a re-post of Studio 30 Plus piece from last year, which may give you an insight into my high level of maturity regarding this issue. Or this one where I sucked it up and finally purchased a cane.

Donkey Balls

I reached another exciting milestone in the world of crap health last week. My first time in a wheelchair. Or as I like to call it, the soul destroying spawn of Satan, that makes life suck sweaty, hairy, donkey balls. Do you think it'll catch on? Now I do admit that I may have a small flair for the dramatic, but I do think it describes it quite well.

I've been reliably informed by all and sundry, that I should be much more practical and mature about these things. You know, that whole “act like an adult” malarkey. But even at 38, I have never embraced the whole maturity thing. Frankly, it all seems rather cult-like, and I will not be drinking the Cool Aid any time soon.

To be completely truthful, my preference would be to pass out and land face first in the lap of an old musty granny in the food court. Better that, than sit in that chair of doom. But I acquiesced, with a good dose of pouting and foot stamping, and agreed to being wheeled around a shopping centre for three hours. And okay, it did make the whole process easier. And yes, I didn't have an unfortunate granny incident. Which was probably a good thing for both myself and all the unsuspecting grannies in the vicinity. But there were still the balls of donkeys being sucked, left, right, and centre.

This isn't the first event in the past five years worthy of tea bagging a member of the Equidae family. There have been many, many moments of fun since my body decided to embrace an obscure disorder and give my life an atomic wedgie.

Buying my first pair of granny compression hose was a blast. Though in truth, the best part may have been telling the pharmacist that they are what all the local hookers wear to turn on their elderly clients. I may also have added that combined with a dab of Bengay behind the ears and on the wrist, they are better than Viagra for those randy old silver foxes. Her shocked face did suggest my attempts at humour may have gone a little astray. On reflection, that may explain why I am met with a look of disapproval every time I go in to refill my prescriptions. Putting them on is about as easy as wrestling a giant squid, and requires a nanna nap for recovery. This is only slightly offset by the fact they work better than Spanx to lift my arse and smooth out my ever expanding saddle bags. Whilst I do feel an overwhelming need to seek out a blue rinse every time I put them on, I am willing, although reluctantly, to admit they do help, a bit.

Buying my first shower chair from the 'aged care' section of the store, was brilliant. In the way that falling into a pile of monkey vomit is brilliant. For months, I persevered. No shower was going to get the best of me. I was undeterred by the heat dropping my bp and ending up legs akimbo in the bottom of my manky shower. I was even undeterred by the possibility that my unconscious, moist, pasty, blancmanged, and naked body may be found by strangers should I faint. Rather, this further inspired me to shout my defiance to the universe like a mad woman, “Mwahahahahaha, I laugh in the face of naked danger”. Instead the large colony of mould and short and curlies cohabiting and seemingly reproducing in the bottom of my shower were the incentive for purchasing that practical piece of plastic. Even now, over a year later, I curse that chair, and insult its mother, every time I step in to wash away the funk of ill health.

Buying my first dosette box for my ever growing pharmaceutical collection, rates up there with falling on the rough end of the pineapple, whilst shouting “may I have some more”. When my grandmother-in-law bemoaned the fact that she needed to take a single tablet a day at 80, I may have envisioned beating her to a bloody pulp with my dosette box, which currently contains 133, 19 per day, individual tablets for my week. Again, whilst I would consider this investment very useful if I were a mature and rational individual, I instead see it more as a pain in the arse to fill each week. A dosette box is required as I have the memory like a goldfish and am easily distracted by bright shiny objects. Personally, I think that makes me unpredictable and fun, but I have been reliably informed by the responsible members of my household that it makes me prone to forgetting my tablets. Unfortunately, the ineffectual little box doesn't alert me when I have forgotten to take my tablets. It has become little more than a place for unloved tablets to reside and a prompt for my husband to berate me for my dumbarsedness. A disheartening reminder of my decrepitude and about as useful as a Speedo on a Lemur.

Buying my first walking stick was up there with a rectal probe. Despite requiring one for a few years now it is only recently I have admitted defeat. I now have a practical stick with a pattern more suitable for Holly Hobby, than a woman who still giggles every time a sports commentator mentions an AFL played by the name of “Goldsack”. I was swayed by the crafty saleswoman who pointed out that it was a great option for a 'young' woman like myself. Damn, my nearly 40-year-old arse is easy. I'm surprised she didn't say it made my bum look smaller. I continue to despise it, and tend to combine its use with muttering angrily under my breath and swearing, when it inevitably becomes tangled in my legs and handbag. Stumbling like a drunk, arms flailing, is still my preferred mode of walking. I would rather stagger into, and grab, the many Japanese tourists who frequent my local area. I'm sure I'd make for a great photo opportunity, and just think what I'd be doing for my local tourism board. I can see the billboards now, “See our beautiful flora and fauna. Sample our local wines and produce. Be groped by strange seemingly-drunk women”. Why would I be practical and mature when I can provide such a public service?

And so the list of donkey ball sucking events continues. Maturity and I will not meet up any time soon. The Cool Aid shall not be drunk. I will continue to rally against the practical automatons who tell me to sit down, put on a jumper, have a rest, or any of the other rational dogma they throw my way. Beware unsuspecting grannies, this 38-year-old stupidly stubborn woman may be face planting in your lap sometime soon.

************

Now if there's any artsy folk in the Melbourne area who'd like to pimp Bernice up a bit I'm willing to hand her over. The old girl needs some bling of some sort to make her usage more bearable. Just be gentle.

Cheers

Michelle

Somehow this seems so perfect.

You Rock!

You Rock.

Did you know that?

You do, you really do.

You Rock in so many ways that there are not enough minutes in the day to list them.

Next time you beat yourself up for all your the ways you tell yourself you suck, stop and remember, 'You Rock'.

Because the reality is simply being you means, You Rock.

You Rock because you managed to get up.
You Rock because you got dressed, you brushed your hair, or you simply managed to wipe the morning gunk out of your eye.
You Rock because you remembered meds, eventually.
You Rock because you made it to the couch.
You Rock because you only threw up once after breakfast, instead of twice, or three times, or...
You Rock because today you did 5 leg lifts.
You Rock because your exercise today included a cool horizontal couch dance when The Black Eyed Peas came up on your ipod.
You Rock because you put on your old belly dancing coin scarf and gave it a five minute whirl and managed to only fall once.
You Rock because you made it to the loo.
You Rock because you sat outside and let the misty rain fall on your face.
You Rock because sat and got covered in smelly, furry puppy love for half an hour.
You Rock because for all the crap that chronic illness throws your way you manage to get up again and take the next step.
You Rock because you ignored the shouldn't, couldn't, wouldn'ts and just went for it.

You Rock because today you're you and that's damn fine.

So how many ways have you rocked today?

Michelle :)

Vlogging live from Crazytown

In a moment of insanity I thought that a vlog would be easier to do than a blog post. Rambling at a camera surely has to be easier than trying to combine thinking and typing, right?

Note to self: don't listen to yourself when the dumb is strong. Also avoid playing with sharp objects, hide all hair scissors and don't go near the stove. And for the love of God don't go to the vet and see the cute pictures of the kittens that need a new home. They are like soft furry crack and you come damn close to falling off the wagon.

Anyhoo. Here's the rambling, slurring result of about 6 billion takes. Enjoy.



Alternatively I give you Kate Miller-Heidke's fabulous Facebook Song (does contain swearing)


Cheers
Michelle :)

And yet another shameless plug for votes.