Monday 14 May 2012

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

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 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.


Friday 4 May 2012

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.


Somehow this seems so perfect.

Thursday 3 May 2012

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 :)