#Hospitaglam: Giving illness a very fabulous middle finger.

(Yep blue hair, fabulous frock, bright red compression stockings and sparkly red heels for a pacemaker and cardiology check, I may be a fan of  #Hospitalglam)

I've been stewing over the reaction to #hospitalglam for about a week now. Comments have ranged from supportive to outright rude. And it is the later that have really gotten to me. Both the unwell and the well have slammed the concept. And whilst I must say I am not surprised by the comments of the healthy, I am disappointed by many of the comments from fellow patients condemning her for making their lives harder, or doubting the veracity of her health issues.

For the uninitiated #hospitalglam is the creation of Karolyn Gehrig and can be found on Tumblr, Instagram and Twitter. Gehrig was diagnosed with a form of Ehlers Danlos Syndrome (EDS) and like many of us with chronic illness, is a frequent flyer in the medical system. She wears funky clothes (I have serious dress envy over her pill dress) and poses for the camera in an array of hospital and clinic settings. Many have followed her example, posting various selfies of their own glammed up medical experiences, adding them to the hashtag. The concept came to light recently in mainstream media and the discussions around it have been interesting, and at times infuriating, to follow (why I read comment sections I'll never know. It's a bit like picking a scab until it bleeds. Or watching QandA.) The issues surrounding the accuracy of the information relating to EDS is an issue for another post, but I will say, journalists pick up your game. It's not that hard to find accurate information about this collection of disorders.

When you become a patient autonomy takes a hit. The very nature of disease and injury mean you are reliant on another, a doctor, to direct certain aspects of your life. You are reliant on the expert knowledge of treating teams to direct aspects of treatment and allow access to certain medications. Part of being on top of your disorders necessitates regular reviews and things like blood tests. You must, to a certain extent, suck it up, (as my your control freak nature screams in protest.)

You must accede control to a medical system which trundles on oblivious to your personal needs and desires. The hospital PA doesn't care that you want treatment yesterday rather than waiting for six months. Hospitals feel more production line, than houses of healing as time poor staff are forced to minister to an ever growing multitude. You must tell your story a bazillion times to every medical or allied health professional. You must play the game to a large extent, to have access to care.

The clinical nature of medicine both in the hospital or regular clinic is frequently cold and impersonal. You have to wear backless gowns and bear your body to strangers. You have to lie there while you are pushed and pulled, spoken about rather than too. As much as you pride yourself on being able to self-advocate, and some like myself are lucky to have a husband who is a strong advocate for my care, there are times where you are blocked. A doctor can turn around and say no to a treatment and given the rarity of my presentation, I know I am limited to where else I can go. Choice is a lovely word, but when it is spoken about in the context of health, it negates the realities of issues like geography, finances, availability, and rare illness.

Control is an illusion and when you are thrust into the medical system, particularly as a chronic or long term patient you are slapped in the face with this reality. It's easy to despair. It's easy to feel beaten down and hopeless. It's easy to lose yourself to illness and the world that surrounds it. How we find our way out is complex. The paths we take and modes we employ differ greatly. And we arrive at that place at different times. But if we are to not simply exist but thrive, we must find a way to reclaim control, and our sense of self, however that may look.

#Hospitalglam is one method of taking back control. And one I relate to strongly (Anyone who followed my Clicking My Heels for Dysautonomia fundraising last year, or follow on FB, will understand why I am a fan of the #hospitalglam concept.) But it is not the only one. Gehrig is not telling people what they should do. She is not telling people they must take her path. She is sharing what works for her and the large following she has garnered suggests that there are many people who can relate to her, and her mode of rebellion/control.

I have seen headlines talking about #Hospitalglam, taking the “ugly” out of illness, or removing the “shame.” Neither word deserve a place in the illness narrative, and their use misses the point of the hashtag. There is no shame in illness. It is simply something that occurs as part of life. It doesn't matter how good a person you are or how well you eat or exercise, illness can still come calling. No one wants illness, we don't actively seek it. Nor do we do things to prolong it. “Shame” is closely linked with blame, and if you have been ill for any length of time there will be someone who tells you how you are to blame for you continuing malady, be it your diet, lack of appropriate religiosity, lack of kitten cuddling or refusal to see their favourite swami or eat 85kgs of [insert super food of choice] each day.

We are continuously fed a lie both in the community and through the media that illness is shameful and ugly. Just to clarify NO ITS NOT. “Shame” and “Ugly” are judgement statements. Why should we be judged or internalise such a view, for something that is out of our control? So not only do I have to deal with a debilitating illness but now I must also feel ugly and ashamed in the process? I say F**k that!. Yes there is pain. Yes there is vomiting. Yes we fall over. Yes we require medical aides. We are cut and sampled. Swathed in bandages and stitches. We may need feeding tubes or colostomy bags. Gain excessive amounts of weight due to hormones or treatments, or end up little more than bones in a skin bag due to malabsorption and paralysed stomachs. Our mobility, speech, thinking etc may be impaired. We may be depressed, anxious, dealing with bipolar disorder or schizophrenia. But none of that is shameful or ugly. They are merely the cards we are dealt. To equate illness in any context with shame or ugliness is insulting. And perpetuates damaging stigmas. Again, I say to the media, pick up your game.

In #hospitalglam many see an alternative to the paralysing and disempowering pity narratives of illness. They see an “up yours” to illness and a system both medical and societal that says to be ill you must conform to a certain paradigm. You are either pity worthy or inspirational. But in neither case can you win. There will always be someone to tell you, you are doing it wrong. The classic “you don't look sick” in all it's forms is thrown at those who wish to frock up or pop on some lippy (if only putting on my heels cured my broken genetics). Alternatively, if you stay in your pjs and trackie dacks you are becoming your illness and need to pull yourself up by your bootstraps. Damned if you do and damned if you don't. And these are the themes peppering the comment sections of articles about the hashtag.

Gehrig is not telling anyone what they should or shouldn't do. She is expressing herself in a way that works for her. The media interpretation of #hospitalglam has missed so much of it's intrinsic value. Her behaviour is not unique (though it can't be framed as an inspiration narrative by the media unless it is seen as an abnormality), many frock up in hospital and at medical appointments, but hers has been a more public and organised expression. Given her background in performance art it is not surprising that this is what works for her. But the way she and others have chosen to express their experience is so anathema to the wider societal views on illness that it has been held up as more of the inspiration porn of which the media is so fond. Just like those dealing with disability, the expectations of those with chronic illness are so low, any achievement is seen as miraculous. We are taught that such life events are the end of the world, so many are unable to conceive of a life filled with joy or fabulous frocks and illness. It is this framework which is so angering to many patients who feel like #hospitalglam represents yet another burden to add to their experience, rather than a moment of choice with a bit of tongue-in-cheek sparkle. Thanks media.

Patients are people first. And people are inherently diverse. The way we react to illness varies greatly, but that doesn't mean we can't appreciate or support the way others choose to seize the day. Even if we don't understand or like their particular choice. While #hospitalglam celebrates fashion for it's power to give illness and the medical system the finger, others use art or music. Some form book groups or join support organisations. Some garden. Some engage in cosplay. Some are Trekkies and yet others, shudder, Beliebers. The idea that illness is some sort of end of the world scenario is far from the truth for many. When you are living with an illness or disorder that may never go away you find ways to deal with it, and that will look differently for different people.

Whether other's do or don't like #hospitalglam is beside the point. This is her experience and her expressive outlet. She is entitled to do whatever works for her. Just as every patient is entitled to do what works for them. As someone who wore sky high red sparkly heels to their MRI and bright red compression stockings during their pacemaker implantation, I celebrate her chutzpah and raise my bright red lippy in salute.

Michelle

Prove it.

A music celebrity singles out two concert goers not standing and dancing. The concert stops and security is sent over. It turns out one was in a wheelchair and one an amputee. Satisfied the celebrity declares that it's okay then, and proceeds with the concert.

Where oh where to start?

I'm not even going to mention his name. It's all over social media at the moment and I've had my say over on my FB page. And in truth, his identity is irrelevant except to point out his incredible display of wankerism. I'm not even going to get into the argument that if you've spent your hard earned cash on a concert ticket and want to sit throughout, that it's your right to do so. But for me there is a bigger issue at play.

What this represents is yet another example of ableism and the persistent idea that disability is visible.

What if, like for many people there was no wheelchair, no cane, no prosthetic, no visible difference that signified genuine disability. What if the ailment that they live with is completely invisible and they look well to those who don't know them.

As Invisible Illness Week 2014 comes to it's conclusion we are shown a very public example of how many people envision acceptable disability.

Living with a disorder that is for the most part invisible it's hard not to imagine the singer's reaction to my sitting if I wasn't in my chair. Standing, particularly for an extended period, is incredibly difficult for those living with Dysautonomia. Standing up is said to require three times the energy required for those without autonomic dysfunction. The same issue occurs in multiple conditions. Prolonged standing for those with EDS, ME, COPD, CRPS and many other chronic and traditionally invisible conditions can be incredibly difficult.

Yet we may save up our limited energy to attend a concert. We may up our meds, rest for days, and book out days after to recover. We do all that we can to attend any events and as much as we'd like to stand and dance, we are simply stoked to be there sitting in a seat watching the singer of choice.

To be singled out and chastised for not getting up and dancing would be embarrassing to say the least. To then have to prove why you have the right to be sitting. To have a complete stranger who knows nothing about you decide that your disability is valid or not valid is dehumanising and out right rude.

Imagine if that person was only just coming to terms with their disability?

You have to stand:

"unless you got a handicap pass where you get special parking and s---,"

Ugh. Which bit of ignorance to start with? 

Why should anyone have to prove disability? Especially to a complete entitled douche who thinks he has the right to both chastise and decide who can and cannot stand at his concert.

I am tired of others asking people to prove their disability. To prove that what they experience is real. That it is legitimate. I am tired that there is a continuing pervasive idea that only certain very visible issues are genuine or valid disabilities. I am over people who think that they have an instinctive right to judge the legitimacy of a person's disability. I am over people who have absolutely no expertise and no idea who suddenly feel they are experts in the field of disability and have developed some sort of superpower that enables them to identify disability at a single glance.

I don't wish this singer ill. I don't wish him to be in my position. I don't want him to spend a day in a wheelchair, after which he can just  get up and go on with life. I don't want him to think that the only way to experience disability is to be in a wheelchair. A day or a week or a month living my life, will not give him true insight into my experience. I have been ill 24/7 for 8 years and I will continue to be ill and get worse. A day in a wheelchair will not expose him to all that entails. And frankly why should that be what is required to simply act like a decent human being.

You can have compassion without understanding. You can have decency without understanding. You don't need to know the intricacy of anothers life to treat them with respect due any human being.

Disability comes in so many shades. Some visible. Some not. Some physical. Some psychological. Some intellectual. Some in a combination of all of those. I don't wish pain, or nausea, of passing out, or anxiety, or depression, or any other issue upon him or anyone else.

But I do wish that people would pull their heads out of their arse and

a) get some perspective,
b) stop trying to judge others on false criteria
c) become educated,
d) just be a decent compassionate human being who realises that they cannot spot disability at a single glance
e) have absolutely no right to ask for proof
f) or judge in the first place.

Oh and did I mention pull their head out of their arse.

Michelle

Health Activist Awards: And what's in a photo?

Wego Health's Health Activist Awards are open to nominations at the moment. You can nominate for everything from Best in Show: Blog to Advocating for Another. I've been lucky enough to be nominated again this year for:

Best in Show: Blog (I originally wrote "Best in Shoe". Freudian slip perhaps?)
Best in Show: Facebook, and
Hilarious Health Activist.

Thanks guys. I really appreciate you not only thinking I'm worthy of a nomination, but also using up your spoons to take the time to fill it in.

But that's not what this post is really about, although I am pretty stoked

I was looking at my photo above and realising I don't look too shabby. If I look back over this past year that's a bit of an aberration. I don't normally look like that. The effort involved isn't all that worth it. But, after looking at some of the other activist's pictures I thought I should at least try to look a little presentable.

The fact that I was un-bathed, that I was still wearing my pj bottoms, and could hardly get off the couch, doesn't show up once you throw on a bit of colour, brush your hair and chuck on some lippy. I hadn't even managed to do up all the buttons on my cardigan as it was simply that bridge too far. Thank goodness for the ability to crop the photo. And the lack of smellevision.

 This is what I looked like prior.

Pasty, tired, and hair unbrushed. If you'd asked me to speak you would have had to translate through the slurring. I couldn't feel the left-side of my face and my eye-sight was complicated by some slight double-vision. Fatigue is now a constant trigger for my muscle weakness, particularly in my face and there doesn't seem much I can do to alleviate it.

In my spiffy photo, you can still see the droopy left-side of my face, which seems to be becoming more prominent. Who knew smiling could be so hard? But it is far more hidden thanks to considerable effort and good lighting. Much slapping and rubbing of my face made some movement possible, and thankfully you can't see the tremor in the muscle.

(Which is the real me?)

Now I sit back and wonder if I should have put up the unaltered version of me? The real version of me. The real version of living with chronic illness. The one that would have left me with some energy for the rest of the day. The one I see 99% of the year.

I feel like a bit of a fraud telling people they shouldn't worry about showing their sick face and here I am hiding my own. Nine times out of 10, hell, 99 times out of 100, I don't bother with make up. Hair brushing is an after thought. And bathing? Well that's why they invented perfume! Normally, I'd rather spend my limited spoons on meaningful activities like planting some herbs in a pot, or doing the household chores that can't wait.

But every now and then I have an overwhelming urge to feel girly. Sometimes I want to look normal, whatever that is. Sometimes it's simply nice to hide the pasty blancmange.

In the end it's about balance.

"But you don't look sick!" is a phrase that becomes part of your psyche. Repetition burns it into your brain. It's a bit of a trigger for me and makes me want to parade my droopy, pasty, blancmange face for all to see. A bit of an "Up Yours!" to the world of disbelievers if you will.

The reality is that I don't care if people see my sick face. I've shared enough photos of me at my worst that it's hardly a secret. And I'm open about all the less savoury sides of illness. But some days it's just nice to take the time to pop on some red lippy and brush my hair. Even if I'm going to be sitting on the couch with no one to see but the dogs. Sometimes I will even put on a nice dress, even if all I'm doing is running from the couch to the bathroom 38 times a day.

Sometimes you've got to do what's right for you in the moment. And sometimes it's simply nice to have at least one picture where you don't look like The Corpse Bride.

Cheers
Michelle :)

If you want to Endorse me for the Health Activist Awards head on over to here and click under my picture.

I love a bit of Tony Bennett,and this duet with James Taylor is just what I needed.
 

Am I sick enough for you?

Today I read another "but you don't look sick" comment, and it really got my goat (fainting goat of course). The comment wasn't directed at me personally. Although I've heard it enough times over the last seven years, that it raised my hackles once more and had me yelling at the computer screen in defence of the person being attacked.

I'm still perplexed as to what sick looks like. Or what the threshold is as to when you're allowed to say you're sick? And who is the final judge? Are Randy, Keith, Nicki and Mariah going to come to my house and judge my performance? Will Nicki give me a bizarre nickname? Will Randy call me "Dawg".

The fact is that not all illnesses are visible. You can't see diabetes or asthma. You can't always see cancer. A person's suffering cannot be judged by appearance or even diagnosis. Each presentation is unique to that person. As is how it impacts on their life. A twitter friend recently mentioned the hierarchy crap that goes on in cancer support groups. What the hell is wrong with these people? Though I strongly suspect that patients who devalue another patient's experience would be arseholes even if they weren't ill. Having seen similar issues in the Dysautonomia and EDS community at times, it is clear that being ill does not inoculate everyone against developing a bad case of, Being a Dick. 

I am told not to dwell on my illness and conversely that I need to educate people so that they may better understand my experience.

I am told to get out more and conversely that if I'm out and about I can't be that bad after all.

I am told to brush my hair and put on some lippy to feel better and conversely told that I don't look sick.

I can't win.

Should I post only sick photos on this blog or Facebook page? I could do that.

 Oooo look I'm in hospital. Unbrushed hair, sexy hospital gown, 

and slightly deranged look. I must be sick.

Would that convince you?

Or maybe a picture in of me in my wheelchair, Bernice.

FUBAR? 

OMG inappropriate sick person, be more dignified and inspirational.

Are you convinced now?

Some days my outside belies the dysfunction that is occurring within.

Ooo look I'm dressed, my hair is brushed and I have put on lippy. I must be fine. 

Should I have to carry a portfolio of sick photos on those good days to convince you?

Should I have a handy list that describes all my symptoms, medications and the way it all impacts on my, and my family's, life. Bullet points so you can assess my worthiness at a quick glance.

The reality is I have disorder that isn't always easy to spot by others.

I'm sorry if that offends your sensibilities.

I'm sorry that for the 10 minutes you spend with me I don't meet your expectations of sick.

Illness is part of my life. A big part. But I don't have to carry a placard to announce it to the world just to appease your limited thinking skills.

Does that clear up the confusion?

Stupid me for not wearing my incapacity on my sleeve.

And then I am hit with an attack from the flank.

Yes I write a blog about my health and the experience of being ill.

Yes I have a Facebook page dedicated to this blog where I can chat with the community that has sprung up and post inane jokes and take the piss about my experiences.

For some that means I concentrate too much on my illness. Again I can't win.

And yet I do have a life outside of illness.

I paint. I cook. I garden. I love scifi. I am addicted to The Walking Dead. I love music. I have a family. I am a sad dog person. I love sarcastic jokes and black humour. I enjoy a good laugh even when it ends with my passing out. I have watched Zombieland so often that I can quote large sections of the movie by heart. I love vintage fashion. I love re-purposing furniture. I am team Dean. I love hanging out with my best friend, singing 80's ballads and solving the world's problems. I love the smell of books, the real deal, none of that Kindle crap. I want a farm and a chook house. I eat brown sugar out of the jar and have been known to pick out and eat all the the white marshmallows in the bag.

One train of thought tells me if I do all that, I can't really be sick.

One train of thought tells me if I don't embrace all that, I am dwelling in my illness.

Damned if you, and damned if you don't.

NEWSFLASH

I don't care if you think I am sick enough.

I don't care if you think I dwell on my illness too much.

You don't know me or my experience.

You have a glimpse into my life nothing more.

There is no face of illness. There is no look you can pick out in a crowd.

The pictures above represent aspects of my illness and life. But are hardly representative of me as a whole.

The underlying disorder is still there, it's just that sometimes the packaging changes.

It's not my fault that you can't understand that.

And it's not my job to educate you.

That you can't understand says more about your lack of imagination than it does my life.

That you need to judge me says far more about your lack of compassion than it does me.

Imagine what you could achieve if you re-directed all that energy into simply being a decent human being? Or perhaps, shockingly, focusing on your own life.

You may not be able to spot my illness, but I can spot your lack of character at 100 paces.

You may not like how I live my life and deal with my illness. But. Well. Frankly, I couldn't care less.

Now excuse me whilst I go and continue living my life.

There are wheelchairs to be bedazzled, and Daryls to be sighed at.

Michelle

90% Mucus 10% Whinge

I love Winter I do.  It's cold (in fact it's supposed to snow here today) and you all know how I feel about cold.  It's right up there with giving Johnny Depp a sponge bath or eating chocolate off his belly.  Cold is good.  But unfortunately it also has a dark side.  It's also flu season.  The time of year where people cough on the back of your neck in line at the supermarket, or sneeze all over the produce section.  The time of year where you need a surgical mask and a blow torch to kill the bugapalooza growing on every surface in town.

Damn you sick people who can't keep your mucus to yourselves.  You should all be hunted down and kneecapped.

In case you can't guess, I have caught a bug.  And, I'm not happy Jan.

I have been reduced to a fetid cloud of pestilence, mankifying in bed.

Initially it was somewhat amusing.  Normal sick.  Sick like other people.  Sick that has treatments like chicken soup and Vicks Vapour Rub.  There was a novelty factor, that was somewhat pleasing.  However, that novelty factor wore off the second I went to take a sip of my coffee only to have a steady stream of super runny mucus run from my nose to plop in my mug.  This is not on people.

Since that time my body has been taken over by a ravenous horde of bugs, till I am now composed primarily of mucus.

I am past the point of walking around with tissues protruding from my nostrils in a vain attempt to stem the unending tide of mucus.  I am past the point of sitting miserably in the shower letting it's free flowing grossness be swept away by the shower nozzle.

I am even past the point of uncontrollable full body sneezing.  Thankfully, I have not reenacted my infamous Liverpool Kiss, Kitchen Bench incident (tip for the day, don't sneeze whilst bent over the kitchen bench) as I have been to unwell to enter the kitchen.

I am now at the joyous point where it solidifies in your lungs and produces the ultra-sexy Darth Vader wheeze.  I may or may not have amused myself for about an hour yesterday by saying "Luke, I am your father" in between lung wrenching coughs.

Stupidly, I though I was winning the war against my pestilence and went to physio on Tuesday.  Fool!  I should be studied for my heightened level of stupidity.  I'm pretty sure I heard the bugs in my lungs laughing at me, though that could have been my feverish delirium.

My throat feels like I have been chugging razor blades, and my ears want to burst.  My head is in a vice and even my eyelashes hurt.  Perhaps most distressing to my concerned loved ones, my whinge quota has gone up ten fold.

To say this has played havoc with Bob would be an understatement.  Standing and breathing, is over-rated right?  Who needs a pulse?  Not me that's for sure.  Though I could have done without the tachycardia and stabbing chest pain last night that made me feel as if my whole body was beating.

Impersonating characters from Star Wars aside, I have attempted to distract myself during this time.

Coma sleep has been quite good.  Though waking up to find your face stuck to the couch or pillow by mucus that works better than super glue, is a bit of a downside.

Whimpering into my pillow has passed many an hour.

Watching Zombieland did make me laugh/cough/choke.  And seemed somewhat appropriate given the various disgusting fluids exploding from my body.

Staring blankly at the computer screen for hours on end as your brain tries desperately to decipher those weird black squiggles, is quite productive.

I have redecorated the bat cave.  I'm going for the littered crack house look.  A pile of moist used tissues over there, another over here.  Multiple glasses and dregs-filled mugs.  Casually tossed books.  Throw pillows with suspicious mucus stains and funk coated pjs mutating in the clothes hamper.  Half empty Vicks jars and empty Panadol blister packs complete the ensemble.  Add in fragrance Eu De Sick, and I think I'm destined for cutting edge design magazines.

Luckily my supportive family have been on hand with comments like:

"Hope you get better Mum.  Remember you need to drive me to the movies on Friday", or

"So we're on our own for dinner then?"

Where would we all be without the love and understanding of our families.

So I shall now head back to my snot encrusted pillows, wipe the eye boogers from my tender lids and dream sweet dreams of Captain Jack turning up on my doorstep with a box of super soft aloe vera soaked Kleenex.

Cheers
Michelle

PS Any tips for passing the time whilst caught in the less than tender embrace of pestilence would be greatly appreciated.

After looking in the mirror this morning I realise I am truly bringing sexy back, yeah!

Perspective: DARE Re-post.

Having a bit of a blogging block, so I thought I'd re-post an article I wrote back in March for one of the Dysautonomia support groups I'm involved with, DARE.  

I realised today that I have spent so long trying to minimise my illness that I have lost sight of what it really is, and how sick I actually am. Why I’ve chosen this path is complex. I’m not completely sure I can identify all the reasons why I do this, but I’ll try.

I know part of it is my attempt to shake my fists at the universe and say, “You can’t beat me”. To tell my illness that it doesn’t own me and that I am still me under my compression hose and gallons of water. You need to do this to survive. It’s hard to keep getting out of bed each morning unless a part of you says I can do this, no matter the reality of the situation.

I know part of it is that I am sick of being the token ‘sick’ person. I’m over it. I don’t want people to know how ill I am.  I don't want the first question to always be about my health.  I want them to see me rather than dysautonomia.

I know part of it is my strong aversion to pity. I would rather kill myself putting on my ‘well’ mask, pushing myself to the limits and suffering for the next week, rather than get the pity look or comments.  They cut me to the quick and leave me with a sense that the word 'VICTIM' is being continually carved into my forehead.

I know part of it is that my ‘well’ baseline is now so much lower than those without chronic illness. How do you register a ‘sick’ day, when every day is a 'sick' day.  Symptoms that were so strange and frightening at the start are like white noise now. I’m permanently dizzy. I’ve had 7 years of dizzy.  I don’t really remember being non-dizzy anymore. If I didn’t wake up to nausea each morning, I think I may feel as though I’ve lost a part of myself (not that I’m not willing to give it a go).  'Normal' doesn't necessarily have to be a good situation, but it is familiar and that translates to a warped sense of comfort.

I know part of it is that I don’t look sick most of the time.  Not that I go out in public when I am really ill.  As those of us with dysautonomia have all experienced, people are happy to tell us we don’t look ill.  They might as well scream “LIAR” each time, as it is frequently clear that there is a 'look' to being sick and like jeggings, it is something that I am yet to master. 

I know part of it is that I used to work in a hospital. I know what ‘real’ sick looks like.  I've worked in palliative care. I know what these patients and their families went through and, my illness seems so petty in comparison. Basically I feel guilty for saying I am sick.

I know part of it is I can’t stand people who wallow in their illness. Who roll around in every bit of pain and discomfort and seem to enjoy the sick role. A while back I was on a forum and the topic was related to severity of symptoms. What began as a a simple exchange of what each person was experiencing, became a game of oneupmanship. Certain posters tried to out-sick each other. Bizarre, and certainly not a game I ever wish to win. 

I know part of it is that many of these same posters say, “I am super ill and yet I still manage to work, volunteer, raise my family, work on the PTA, cure world hunger, organise peace in the Middle East, and solve global warming. Those who say they can’t, have a bad attitude and are lazy”. Logically, I know they are tossers and would most likely be in every aspect of their life, but it still makes me feel less. So I fight through to try and do things that I know, in a moment of clarity, are far beyond me and fail miserably. I can’t even be sick right!

I know part of it is that growing up I was always taught to hide my true feelings. When I was ill as a child I was told I was a hypochondriac and to harden up. If things were bad we hid them and in turn hid ourselves. I was raised in a family where only the weak mentioned they were feeling unwell.

I know part of it is that incompetent and misogynistic doctor who told me it was all in my head. Thanks to a long list of cardiologists and neurologists, I know he’s wrong.  But I still have that nagging little voice saying “you don’t have an illness you are just a nutter”. Stupid I know.

I can sit back.  Put my psychologist logical hat on.  Sit my illogical emotional self on the couch and ask that part of me to tell me about my mother (oh self, lets not go there, thats years of therapy) and pull apart my illogical reasoning. But often we are driven by those little voices that tell us how we ‘should’ behave. I hate those voices with a passion but I still hold them close, they are my 'frenemies' and it is hard to part with them.

The other day I had a bit of a reality check. I wrote a post about the good old ‘simple faint‘, on my personal blog.  For those of us who experence this or even pre-syncope on a regular basis it just becomes part of the daily existance. But I was shocked by the comments and messages I received. People were truly horrified about the whole experience.  I’ve had similar comments before about posts, where people wish for me to get better, but never the shock aspect.

I was taken aback.

Am I really that sick?

Am I really experiencing something so horrible?

I mean I know it’s not pleasant, but it’s part and parcel of living with dysautonomia.

Then it stuck me. I’ve been living with this so long that I’ve lost sight of what I am going through. My normal is so skewed from reality that I have lost the ability to  see my dysautonomia with clear vision. If one of my loved ones was going through what I described I would be horrified. I would never judge them like I judge myself.

I realised that I don’t have to deny my illness to be able to live with it. It’s not about rising above it necessarily, but accepting it for what it is, and to find it’s place in the big scheme of things. I don’t need to minimise it to make it bearable, that only increases the load I have to bear. I’m going to bring it out of the shadows, not for anyone else, but for me. Admitting it does not make me weak, self-indulgent, or all the other negative names I can throw my way. It’s okay for me to be sick.

Now I’m not saying those little voices wont keep getting their way on occasion, I’m realistic enough to know that. But I also know that’s part of the process. It doesn’t have to be an all or nothing. It’s the journey to find a balance between the two.

They say that part of the solution is admitting you have a problem so I’m going to start:

“Hi my name is Michelle and I really am sick. And that’s okay”.

Cheers
Michelle :)

How To Spot A Sick Chicken.

I'm pretty inured to the whole "you don't look sick" line. It all becomes white noise after a while, though I will admit to often thinking, "well you don't look like a knob either", but I generally have enough tact to keep that to myself. Well sometimes. According to my loving family, I occasionally have a bowl of bitchy for breakfast, and my Mother Teresa persona is replaced by a large dose of bitch with a side of cow. Usually, this has something to do with a lack of coffee, and really if you speak to me pre-caffeine that's your own fault.

[Image: A Vintage image of a woman holding a cup of coffee. To the right of frame in black text it reads: I haven't had my coffee yet. Followed by red text which reads: Don't make me kill you.]

In many respects, I'm over what other people think. I have enough on my plate without taking on other people's issues. But recently my happy-hippy, zenness slipped. A few weeks ago I was informed by a relative who shall remain nameless (but we both know who you are and you should know better than to piss off a person with a blog) that, "You can't expect sympathy with that face".

For some reason, the bluntness of this statement hit me like a full on sucker punch to the gut. I was lost for words and just stood there with my mouth hanging open. What was I supposed to say to that? Would I have been within my rights to pick up the coffee pot and send it flying across the room at their head? Was it okay that I had a whole montage of Looney Tunes-inspired cartoons going through my head? Think lots of anvils and frying pans.

The whole idea that I was asking for sympathy was like nails on a chalkboard. I'm pretty sure the effort involved in holding my tongue, and coffee pot, did leave me with an odd twitch and a vein pulsating out the front of my forehead. But other than that I was cool as a cucumber.

Anyone who has ever read my blog or spoken to me for more than 3.2 seconds knows how I feel about the whole pity issue. I HATE pity, it sucks out your soul like a big hairy-arsed incubus (or succubus for those of you of the male persuasion). It is disempowering and frames you as a victim. If you are going to give me pity then you might as well just give me a chilli enema or poke me in the eye with that bastard offspring of a fork and spoon, the spork, and why don't you make it rusty while you're at it. To you and your pity, I say a big fat Bite Me!

Now, this isn't to say that I don't hold my own private pity parties every now and then. But its a very exclusive invite list of one, and may involve chocolate, hiding under my blankies and watching bad sci-fi or horror shows (yes I know the geek alert just went off, but until you've watched a shockingly bad sci-fi or horror show you don't know what you've been missing. If you haven't seen The Blob circa 1988 you haven't lived. The horror of Kevin Dillon's (Entourage) hair alone, is worth the effort of tracking it down). My pity parties are all infected with the Cinderella effect, so they are short-lived. After a couple of hours, I wipe the snot off my face, pick up the mounds of soggy tissues and chocolate wrappers, suck it up and move on.

[Image: a coloured still from the movie The Blob (1988). It shows a white man with glorious 80's curly long hair and a leather jacket to the left of the frame, he looks shocked. To the right a white woman with dark hair and wearing a cream top holds onto Matt Dillon looking scared.]

So in case, I haven't been clear:

NO PITY ALLOWED

So once again I am forced to revisit the question of "what does sick look like"?

If I am sick should I look like this?

[Image: a movie still from The Exorcist (1973). A close up of Linda Blairs face after her demonic possession, pale, scary, horror]

(The Exorcist is one of my all-time favourite movies. So happy when Linda Blair was on my favourite horror eye-candy show Supernatural).

Would I then appear legitimately sick? Currently the most I get is a "gee you look tired". Mind you some mornings when Bob is beating the crap out of me I would be grateful to look as well as young Linda. Problem is when I do look sick, I am usually too ill to go out in public. Conversely, if I'm out I'm feeling 'better', by which I mean instead of death warmed up, I feel like that little bit of goop you get in the corner of your eye in the morning, I look okay. I've most likely brushed my hair and put on some BO Basher, no guarantee of the dreaded shower or clean clothes but there's nothing a few squirts of Chanel No. 5 can't cover.

Not looking sick enough can create many problems. Recently a friend sent me a link about a woman who lost her health benefits because she appeared too happy in her FB pictures and therefore was deemed to no longer have Severe Depression. Damn that brain-fogged woman for trying to break through her depression to attempt some sort of life instead of succumbing to the expected levels of overwhelming hopelessness. It's a miracle. One smiley day and Depression is cured. Maybe I should burn all the pictures of me standing up and wear a disguise when I manage to go grocery shopping? Obviously, the trolley of milk and Green & Blacks mean I'm cured, just ignore the puke bag and salt sachets sticking out the top of my handbag.

Damn those invisible illnesses. I couldn't get a good illness where I look like crap, no I'm such a loser I picked dysautonomia. Way to go Michelle!

Now I did think about getting "SICK" tattooed on my forehead, but I am a wuss. I can't even pluck a rogue eyebrow hair or take off a band-aid without screeching like someone is cutting off my leg. So the tattoo plan has gone out the window. I think I need to accessorise. I'm sure that just like the right accessories can make an outfit, the right sick accessories will enable people to easily pick me for the sickie I am.

So what kind of accessories do I need to purchase and where do I get them? Is there an e-store called Sickies R' Us? Do Maybelline or Napoleon put out a line of anti-bronzers to give you the pasty sick tint? Where to start? I decided I'd google "What does sick look like?", in hopes of finding an answer to my problem. Alas, there was no answer to my question. I could find out what a sick fish looks like, or a hamster, but no answer for a sick 36-year-old woman. Just when I had given up hope I had an Oprah light bulb moment. A ray of sunlight fell upon my computer screen and I found the answer in the form of the humble chicken.

What does a sick chicken look like?

• A sick hen will usually be listless, not moving around much.
• They often sit quietly with eyes shut or partly closed.
• They may move slowly and possibly stagger or lose balance when walking.
• They do not run away when approached, they often just drop down into a crouch and wait to be picked up.
• They may have mucus around the eyes and beak.
• The vent area is often crusted and dirty (ok I did giggle at this one).

Thank you Wiki Answers, once more you have saved my life.

So there you go chicken/human its all a bit the same. Your hen may look pretty on the outside, sexy feathers and all, but look a bit closer and she is just not quite right.


[Image: a black and white cartoon of a chicken sitting in bed with a tray and bowl in from of them. Next to bed, another chicken wearing an apron stands. The text underneath reads: Quit complaining. For one thing, chicken soup is good for a cold. For another, it's nobody we know.]

So if next time you see me and my vent is a bit crusty, you will know with complete certainty that I am sick.

The clucked off Michelle :)