Blogging, you're doing it wrong!

The Internet is filled with helpful posts with titles like "How to blog", "28 tips for running a successful blog", "If you don't follow my rules your blog will die in the fiery pits of hell and your lap top will spontaneously combust in disgust at your woeful blogging, which is an abomination in the eyes of God", or something similar.

When I first began blogging I would read these posts and cringe at my lack of blogging skills. I was doing 90% of the things in these lists wrong, or was totally unaware that certain rules existed. I would stew over them, wondering how to best apply them to my fledgling words. My Type A personality was determined to get this blogging malarky right.

And now?

Almost six years after I first pushed publish I realised I wasn't following any of the stock standard rules and I'd stopped reading those posts.

You see blogging with and about chronic illness doesn't always fit into the rules. Talking to fellow chronically ill bloggers it became clear that for many of us the rules don't work, particularly if your symptoms are unpredictable or quite severe. We are constrained by things like fatigue, pain, brain fog and that pesky problem of trying not to puke up on your keyboard (it's a pain in the arse to try and get half digested chunks out from between the keys). Our blogs are also inherently personal and therefore incredibly unique.

For many of us it is not a question of not wanting to write or not having anything to write about. Instead it is the physical constraints of our bodies that hamper our efforts. And let me tell you, there is nothing more frustrating than being foiled by the chronic illness about which you are trying to raise awareness.I even made it to a blogging conference this year, only to miss half of it as I was busy concentrating on not passing out or vomiting on my note pad.

For me writing about Dysautonomia and my various other dodgy body parts is not about providing a medical resource. I don't offer medical advice or doctor recommendations. I offer no services and have no skills to teach. I didn't set out to raise awareness, although that has developed organically.

All I have to offer my readers is my story.

99% of the posts on my blog are simply snippets about my life with chronic illness. Nothing more and nothing less. Every now and then I get a bit mouthy about certain issues pertaining to disability or chronic illness. But mostly it's just me rabbiting on about the things I experience and the thoughts that rattle around in my head. If a lesson is learnt or a process explained it is more luck than planning.

I understand that for many the rules work. Just not for me. And accepting that I just want to write, rather concentrate on branding, or strategies, has kept blogging a pleasure rather than a chore.

I can also accept that I am going to fail at many of the blogging basics.

I don't plan my posts and I have no schedule.

I learnt long ago that scheduling when living with an unpredictable chronic illness, is a lesson in frustration. It simply set me up for failure. Instead I post when it feels right. That could be once a week or three times a week. Being a personal blog that works. Forcing a post shows. If I'm scratching my head for a topic to write about, I know it's time to step away from the keyboard. I tried back in the beginning to create a schedule and stick to it. This ended up with me spending hours staring at the keyboard waiting for inspiration. In the meantime you could hear crickets in my dull and empty head and I was using up my limited energy reserves on a useless endeavour. I can plan to post every Tuesday at 11am. Problem is that at 10am on Tuesday I may be bent over the loo praying for death, or passed out on the tiles surrounded by an accumulation of dust bunnies and short and curlies, courtesy of my lack luster house keeping. Scheduling is not my friend.

I am a grammar and spelling loser. 

Once upon a time I was known for my writing skills. Lecturers and co-workers would always remark on my literary prowess. Now I am reduced to working with one brain cell named Eunice, and poor old Eunice is overworked. My token response to questions of grammar and spelling are to do a quick check on all the words that have a squiggly red line underneath, and trying not end a sentence with a preposition. My initial drafts are 90% red as I have problems coordinating my fingers and I tend to substitute words even though my brain tells me that I am typing the right word. Add in fatigue and a decided lack of O2 to the lack lustre grey blob that resides in my skull and my final post is often a grammatical abomination. And I'm okay with that. It is often only when the humourless bastions of grammatical purity point out my mistakes that I even notice they exist. However, short of a mistake such as forgetting a vitally important letter in 'count' (been there, done that), I don't tend to go back and re-edit a published post. My writing will never be perfect, and I kinda like that. I simply don't have the cognitive skills required any more and I'm not going to head out back for some self-flagellation because someone pointed out that I put a comma where I should have put a semicolon.

I swear.

Not a lot, but I do. The first post I wrote had the F word three times in the first sentence. My last post ended with calling certain people "an arsehole". If you don't like it, don't read it. But I'm not going to sanitise my experience. Sometimes a good swear is what you need. Sometimes a choice, well-placed expletive gives the emphasis needed. Being chronically ill is frustrating. Dealing with ignorance is frustrating. Dealing with the medical system is frustrating. And the vast majority of my readers understand and relate to that frustration. I have no intention of censoring my writing so in all likelihood my future work will be peppered with expletives if it is appropriate to my topic.

I am big on TMI.

My bowels have featured heavily on this blog because their dysfunction has been a large part of the last 8 years. My dysfunctional bowels have landed me in hospital, I have been scoped more times than I can count and had the indignity of being given an enema by an overly chatty nurse. I share my experiences, because it demystifies and normalises them for others in the same position. Illness is scary because it is unknown. Every time I talk about poo I am inundated with emails thanking me for discussing such a sensitive topic. Fear lives because shame keeps us from sharing. So poo and various poo-related jokes will continue to be part of this blog.

I'm not big on the phenomenon of Illness Inspiration.

Everywhere you turn it's all rainbow-farting unicorns and sparkle covered epiphanies. Roll models for perfect patients abound. They are trotted out regularly on day time TV with big hair and Julia Robert's type smiles so that the hosts and viewing public can bask in their inspirational goodness. That's not reality and leaves the rest us patients feeling like we are doing illness wrong. Well pfft to that! I write about the crap times as much as the good times. I have a laugh where I can and am a big fan of glitter, but I am not here to offer up epiphanies and inspiration on a daily basis. Sometimes I am a whingy, whiney, and sour individual and I'll write about that just as much as I'll write about the times I am happy. Perky has never been part of my make up. Sarcasm on the otherhand is my go-to response to most aspect of life.

I don't have clue about SEO or HTML.

I have Google Analytics but tend to only look at the words people used to find my blog ("Don Johnson smells cat wee" is still my favourite) and where people come from (Hi regular reader from Uzbekistan). My technical knowledge is non-existent. I have more chance of solving the Reimann's Hypothesis than working out how to create a blog button. Learning is hard when Eunice is just trying to keep me upright and breathing. I keep thinking I should move my blog and make it look more professional, but the idea of trying to do it myself and a complete lack of funds (if only dust bunnies could be used as currency) means apathy wins out. Plus every time someone looks down on Blogger it makes me dig my heels in further. I can pay out on my blog platform and complain about it's faults, but if you start bad mouthing my platform I'll take you out at the knees.

I am shite at self-promotion.

Networking is exhausting and I always feel like the odd blogger out. I don't feel comfortable about entering blogging competitions and cringe at asking for votes. I never feel confident enough to share my posts widely. (I may need some therapy to get over that) But above all I don't have the energy. By the time I've published a post I am ready for a nanna nap. The idea of sharing and promoting it is pushed aside by the simple need to breathe and wipe the drool from my droopy mouth. It goes in the too hard basket. Self-promotion or pain meds and coma sleep to recover from the writing induced migraine? The latter always wins. I also have the organisational skills of a meth-addled lemur. I did get all proactive at one point and write myself a list of sites where I could share my posts. And then I promptly lost the list because I have a memory like a sieve. I regularly forget to take my meds, which live in a dosette box next to my bed, and are situated where they are the very first thing I see in the morning. So trying to organise promotion for my blog or particular posts is a pipe dream.

Blog statistics bore me senseless.

I know I should know them. I know they are important. But I just can't work up any interest in them. After 7yrs of statistics and research methods when I was doing my undergraduate and post-graduate degrees, I am statisticed out. Watch Judge Judy or check out my page views? Hmmm I would rather watch old Judes rip the dodgy check-cashing, half-wits a new one. Or I could do another Portlandia marathon, or re-watch Season 1 of The Walking Dead, yet again. Or nap. I don't have an Elevator Pitch and have no idea what my Brand is. The fact that people on the other side of the world there are people who call their version of Dysautonomia, Bob is far more exciting and satisfying than my Bounce Rate or Page Views. And everytime I recieve an email to say that I made a difference in someones life, it gives meaning and value to every hard fought word.

My body will continue to get in the way of blogging. I will post about the wrong things, in the wrong style, at the wrong time, and be completely incompetent on all technical aspects of blogging.

So I'm giving myself a break.

Blogging, I'm doing it all wrong. And I'm loving it.

Michelle :)

)

Reinventing my Routine: Finding What Feels Good doing Yoga with Adriene.

Earlier this year I was featured for the Digital Writers Festival as part of a collaboration with the lovely Madeleine Dore from  Extraordinary Routines. I discussed my day and shared photos of my writing routine. My routine had elements that I tended to use every day but I had no real timeline for how my day would play out.

Living with an unpredictable chronic illness like Dysautonomia, plans and strict routines can be more depressing than helpful. Each time I failed to meet a deadline or complete a To Do list (or lost my To Do list!) I beat myself up. A trait I learnt back in the cradle. I wasn't giving myself any compassion or understanding and stupidly ignoring the physical impediments that were frequently out of my control. In writing out my day I realised how fluid my routine had become. Apart from taking medication and my morning shot of caffeine there was little structure.

This year I have found it hard to find a break in symptom flares. If it's not Dysautonomia it's a migraine, or a flare in my gastric pain, or a bowel that stops working, or my heart throwing up new problems, or....the list has been never ending. And with that I have lost most of even my tenuous routine. Recently I realised the lack of routine was starting to affect me negatively.

When Madeleine recently asked the question,

One of the most delightful things about rituals and routines is how effortlessly they belong to our days and shape who we are. That morning coffee, the way you tidy your desk before you get started, that sip of wine after work where you let everything escape from your mind 🍷🙊 But sometimes routines and habits are stubborn. No matter how many times we mark something on our to do list, we just can't make it work. We can't rise at 6am, or write those two pages of creative prose every morning. We miss coffee dates, skip exercise and procrastinate. We want to hear about that one habit you wrestle with. Comment below and be in the draw to win a double pass to an Extraordinary Routines - In Conversation event at @emergingwriters ✌️

A photo posted by Extraordinary Routines (@extraordinary_routines) on May 20, 2015 at 4:05am PDT

yoga and mindfulness (which I'll discuss in another post) were two aspects that came immediately to mind.

Now admittedly my neuromuscular weakness, disc problems, and autonomic issues make activities like yoga difficult. I can't stand for long, or frequently short, periods and holding certain poses ends with my weak muscles shaking and giving way. Not to mention exercise intolerance. But I know from experience even simple yoga stretches make me feel lighter and in turn calmer.

Earlier this year I was alerted to a 30 Day yoga program run by a yoga teacher from Austin, Texas.  30 Days of yoga with Adriene, made me realise how much I missed the practice. What I liked most was Adriene herself. She is relatable and easy going. Her motto of Find What Feels Good resonated. This wasn't a program where I felt like a loser when I couldn't do the poses or finish a full day. I didn't feel bad when I skipped a day or two as my body played up. And I did A LOT of child's pose when I was unable to keep going or needed a break. But at the end of each session I felt like I had achieved something.

And then I stopped.

Life, or more my body, became complicated yet again and I didn't keep going.

I had subscribed to Yoga with Adriene on Facebook but just flipped past the posts as I fell into a familiar, comfortable, apathetic, life sucks, pouting, mode. Then about the time Madeleine asked the question, a link to Adriene's video for Bedtime Yoga* popped into my feed.


 
At a time when stress and insomnia were taking turns to give me atomic wedgies, it stood out. So I clicked on the link and fumbled my way through the sequence.

And I enjoyed it.

I didn't sleep better, but tension was lessoned. And I finished the whole sequence. A small achievement for sure, but it's surprising how good that can feel. So I did it the next night. And the next. And the next. I may not have been sleeping but I was more relaxed. Given that my insomnia is a creature of years I don't expect that it will disappear after a couple of weeks of yoga, but I am enjoying the process.

The sequence is easy and as ever Adriene is encouraging and relaxed. Find What Feels Good resonates throughout. Plus she makes a joke about her "rack" and that made me laugh. A yoga teacher that is not only relatable, not cracking the whip because you don't find your inner light or do a move perfectly, and makes a boob joke? That suits me to a T.

(Must get one of these)

Recently I decided to incorporate her Morning Yoga sequence into my routine.



Similar to the Bedtime routine it is easy and slow. I have tried other morning routines in the past and they were so quick and energetic with little time between moves. And filled with jargon. And I quickly gave up. On the bad mornings (well really it's more a brunch yoga than morning yoga, for me) I only do the lying down movements and only the bits I can, but at least it's movement and I can even do that in bed.

Plus all of it is free on Youtube. And free is a priority for those of us who pretty much need to sell a kidney just to pay for our continual medical needs. Given I can no longer drive, it also takes out the need to organise lifts to yoga studios, yet another bonus.

My routine has expanded and is now bookended by these two videos. I lie here on my yoga mat in my lounge room in country Australia and follow videos from Austin, Texas. And feel lighter.

Now if only I could stop Freyja from coming to check on me when I am lying on the floor with my eyes closed. An unexpected face full of Great Dane breath or a forehead lick does break through the relaxation aspect a bit.

I'm working on other parts of my daily routine. The balance between structure and flexibility can be hard one. Especially when you are living with complex chronic illness. But factoring in a bit of self care during the day is worth it. Even if I forgot for a while.

Michelle

*As always, before beginning any exercise program you should check with your doctor that you're okay to start. And not everyone will be able to do even these easy yoga poses. And that's okay. Mix it up. Do what you can. Don't force it. As Adriene says Find What Feels Good.

Sing it Nina, Feeling Good. This is one of my favourite pick me up, belt it out songs. My scatting needs a lot of work but I always feel like I can kick some serious arse after singing along.

Feeling Good, Nina Simone by mrfnk

Once Upon a Time, in a Land Far Far Away, There was a Girl who still Believed in Restorative Sleep.

A photo posted by Michelle Roger (@michelle_roger) on Jun 8, 2015 at 6:54pm PDT

Restorative sleep. Yeah. Sure. I had it once. Maybe. Back when Shakira's hips didn't lie. Back when Dexter was putting up his first piece of plastic sheeting. Back when standing in line at the post office wasn't a death defying act.

Slowly open my eyes in the darkened bedroom and the oppressive weight of my body falls. Coma sleep, followed by feeling completely trashed. Three days of migraine, meds and darkness equals an unavoidable deep sleep as exhaustion finally claims it's due. No restoration. Just the emergency breaker in my body's fuse box. A flick of the switch as muscle, bone and viscera are overloaded once more.

Joints protest and muscle screams. Post-flare sleeps are motionless. Motionless equals pain. From hips to back to....

Slow movements. Sharp intake of breath. No choice but to move. Like the inevitable ripping off of a bandaid, joints must bend and rotate. A full bladder doesn't allow for denial and avoidance. Get it over quickly. Well as quickly as my slackened limbs will move. The two for one special. Weakness born of immobility, drags out the pain. Slow. Slower. Snail's pace.

Upright. Breathe. Wait while the screaming visceral reaction to sitting up passes. Rub my feet on the mat. Bright pieces of sari bound and stitched to make a rag rug. An impulse buy on one of my rare outings. An eye roll from Mr Grumpy, but resignation that the rainbow colours and the Come in Michelle, sale sign, already had me planning its placement in our house. The texture under my feet is soothing. Rough enough that the spotty sensation of my soles can feel it roll and compress. Breathe and roll. Rub and breath. Push and squish. And breath. Just breathe.

Weary and maudlin. Repeat the process to stand.

Boy and Bear fills the air as the shower starts

Whoa, and I've been through Your garden
And I've been to Your grave
Lordy may
When I come to my end some day
Will I find myself sitting at some golden gate
Or will it all just float away
Yeah, my end some day

The melody fills in the aching cavern of my skull. Mumble and slur. A word here a word there. A syllable maybe mixed with a half-hearted hum.

garden….float away....someday.

The blast of the shower muffles all.

Slough it off. Slough it all off. Three days of pain and sweat. Rancid, to float down the drain.

Sitting on the floor of the shower is the safe option. Even the chair not worth the risk. Sit on the tiles and let the water fall. Watch it bounce and shatter where it hits pale skin and ceramic floor. Different sound on different texture. Turn my wrist and watch the change of the flow. The rivers of hot water pouring. First this way then that. Minute ripples of muscle and tendon that flex under the skin move the the water sharply left and right. Course altered courtesy of the smallest movement. Or shudder. Or convulse.

Trace the song words on the glass. Rest my head on my knees. The song of the water changes as wet hair covers ears. Wisps of oats and soap rise from warm skin. Wash it off. Wash it all off, to just float away.

Time passes in the white noise of the shower. Songs pass as thought is replaced wholly by the sensation of water on skin. Focus on the water. To the exclusion of all. Stir. Unfold just enough to turn of the water and pour my body onto the bath mat. Cleansed. The sour smell of pain and pharmaceuticals gone. Soft cold breezes rise from the tiles. Sharpening dulled brain and body.

No restoration. But a MacGyvering.

A piece of gaffer tape. A wad of chewing gum and a paper clip. Clean skin and soft clothes. To patch me up enough to function. To hold the pieces together. The funk of illness finally removed allowing me to pretend for a while.

The pain, the nausea, the ugh,

                                                     all dulled.

Open the door. Squint against the sharp morning light. The familiar buzz of the coffee machine. Breath in the caffeine as it pours. Fill the lungs. Let the mug warm my hands. A grey furred head rests on my hip. A green blanket and velvet pillows piled high, await on the couch. Silence and soft song.

This is how restoration finally begins.

Michelle

Getting through

Just get through it.

That's what I thought on Wednesday. And what I thought last week. And yesterday. And likely next week. Just get through it. Expect the payback. The recovery. The preparation for the next step. The next event. The next appointment. Get through that. Then payback, then....

I'm stuck in the loop.

The calm time. The inbetween time. The time where I can just sit and breathe. The time where I can process things. Or fart around doing nothing. Or everything. Doing something I want. Without worry that it'll be too much and I wont be recovered and prepared enough for the next event. That time is missing.

Chronic illness is a fine balancing act. And I'm fumbling.

My recovery time is longer. My preparations often interrupted by flares of symptoms that seemingly have no rhyme or reason.

A few of my doctors have mentioned that I have the crappy honour of becoming a complex chronic patient where my body is so off kilter it just keeps throwing things in for kicks. Those kicks aren't huge but enough to make life that little bit harder. That drain just a little bit more of my already reduced energy. The pain that radiates from my pacemaker pocket and wakes me, stabbing into my chest and down into my breast one of the latest. A rare complication. More common in women but rare all the same. Like my surel nerve biopsy, the nerves that were cut so my heart could keep beating, howl their displeasure and rage against my body. Something else to put in the "live with it" pile. Pain everlasting, poorly managed, ever increasing, and ever exhausting.

The concern face as my heart throws up a new problem. An unexpected problem. More tests. More fiddling. More uncertainty.

And so the breathing space that was once there between events and flares is merging. My resources fewer. My prioritising even more ruthless. There are things that must be done and the rest doesn't even get consideration.

The emails pile up, just like the messages.

Phone calls not returned.

Appointments are scrutinised and prioritised.

Which body part is most in need of tending?

Which appointment will give me the most bang for my buck?

And outside that, life.

Children, husbands, families and households.

The needs that cannot be abdicated. The needs that trump my own. The needs that I am also fumbling.

In the midst of it all an appointment that is easy. So easy it doesn't register until after. When I'm sitting in the car and realise that it was both fruitful and pleasant. There was no antagonism. No fight to get what I needed. I sat with a collection of referrals, for specialists and tests. Break through meds, and understanding. I was too busy getting through, so used to expecting a fight, that I fail to register the gift that is a doctor who gets it.

I sometimes wonder what it must be like for a doctor to be landed a patient like me. Complex and weird. Only there when the going gets bad. Only there when the problem is a mess. So busy getting through it that I wait too long. So busy getting through it, so used to expecting to beg and argue, I didn't give her the thanks she deserved.

I need to focus again. To not just get through. To move beyond ruthless existence. I think I might use up some of my precious resources for a quick note of thanks. A few words to say thank you, I noticed, it meant something. It was an easy spot in the midst of hard.

And then I'll start prioritising again. Shave off this need, cut off that. Distill it all and keep saying No, until it all becomes manageable again.

Because it will. It always does. And I'll rejoice once more in the breath-filled moments.

Michelle

I've been listening to a lot of Sara Watkins of late and this song in particular. Short and simple with perfect lyrics. (I've written about it before here  when I needed a reminder that I always drag myself back.)

Independence, wherefore art thou?

Today someone is coming to the house.

To take me out.

A stranger.

A stranger is coming to take me out.

For an outing.

An outing.

I don't know what I think about it.

Well I do.

I also wonder how many expletives it takes to be kicked off Google? I think I could do it.

It feels like someone is reaching deep down into all that is me, and ripping it to shreds. Big chunks of my being, pulled out to rest in bloody hands.  A tad melodramatic I know. But it does.



I'm not comfortable with any part of it. I feel my stomach churning as I type. I can hear the "But Michelles...." already. And honestly, the "But Michelle...." folk can stick it. Two days ago I turned 42 and today someone is coming to take me on an outing.

Because I can't go out alone.

Because I am reliant on others to leave my house.

Because it's just another marker for the level of shit my body is immersed in.

Because I'm angry and shitty and tired.

Because.

I can go anywhere I like. The local shopping center keeps being brought up. Because heading to Target with a stranger is up there with internal exams, on the fun scale.

And small talk. Small talk with a stranger. Might as well break out the speculum.

I want to go to the gallery. I don't want to talk. I don't want to interact. I want to look at art at my own pace.

I want to not go arse up with a stranger and have to deal with the crap that goes with it.

I want to go and not have to explain why I'm in the chair.

I want to pretend that I'm there alone. I want to pretend I am still independent.

But a stranger is coming to take me out on an outing, because I can't do it alone.

And I am reminded

                                just how fucked my body is.

Michelle

42: "It's here" (Must be said in the voice of the creepy little girl from Poltergeist.)

So 42 is here and I am none the wiser. I would even venture to say I am even less the wiser. Which isn't all that surprising. Damn you Douglas Adams, you lied. I slouch here in bed, 42, and still no clue about life, the universe and everything. Admittedly, I should have known. 42 was also Mulder's apartment number and while he was convinced that The Truth is Out There, he really never found a satisfactory answer. And if Mulder can go through 9 seasons and a couple of movies with Scully, and still be in the dark, what hope does a middle-aged woman with purple hair and coffee-stained pjs (it's been one of those mornings) have? And while we're at it, and I was procrastinating before writing by looking up pictures of Mulder, I came across this picture and realised that Tony Abbott has ruined the red speedo forever. I couldn't even look without a little bit of sick rising up to the back of my throat. Worst birthday moment EVER. And now you can't unsee that either. You're welcome. 

Answers to questions I didn't even know I was asking that became clear today:

• Nasonex squirted under your armpits rather than in your nostril does little for your allergies. Although I'm pretty sure my armpits will be able to tackle rogue dust mites in a single bound while my nostrils continue to weep and offer up their lunch money.

• A casually hung hand towel is not a substitute for a sturdily attached handrail when you are flailing about as you head downward. Terry toweling works well to cover your face and dab the drool from your lax mouth. Pro tip: check for errant hairs (yours, your husband's, or the dog's) and the location of that one miscellaneous slightly damp spot, before use.

• When you are walking to the bathroom with an empty glass in one hand and your Florinef in the other don't put the pills in your mouth and stand baffled as they stick to your tongue rather than going down. Don't then try to drink from the empty glass, or fill and rinse the glass while you are gagging on the pills, still surprised that they are not going down and you still have an empty glass.

• When apologising for slurred speech whilst on the phone to a local medical centre, the slurring does not suddenly evaporate. It is all just a continuation of slurring. Slurring overly articulated words, is still slurring. Though I have a feeling a frustrated half-whispered F bomb may be the only word that becomes crystal clear. Even should the phone be held away from the mouth.

I'm pretty sure that those are the bargain bin versions of answers to life, the universe, and everything. You'd find them tucked down at the bottom of the bin next to a Kenny G cassette, a battered Troll Doll and a dog-eared copy of The Secret. But hey, that's the kind birthday it is. I still feel like crap but still not sure that I feel 42.

So while I lay here and contemplate my navel and my past 42 years I'll repeat my birthday wishes from my Almost 42 post.

I have two birthday wishes. 

1) If you know someone living with chronic illness give them a hug and let them know you care. Because this shit is hard.

2) If you are living with chronic illness, know you are a superhero. Because this shit is hard.

Bring on the birthday cake. 

Michelle

A funky birthday tune.

Maybe someday this pain will be useful.

Little sunbeam after the storm.

A photo posted by Michelle Roger (@michelle_roger) on Dec 29, 2014 at 12:39am PST

A while back I found myself running (okay lurching and stumbling, grabbing walls and chairs) into my bedroom to grab a post it and a pencil. I had an overwhelming need to write down a quick quote:

"Maybe someday this pain will be useful"

It comes from the video below by Jennifer Pastiloff (I also like her "I will not hide my shit nor will I hide my magnificence." No one should ever have to hide themselves.) A fellow blogger and all round awesome person Chris from pixie.c.d. had shared it on her timeline. In my morning pre-coffee haze I slumped on the couch and pressed play. I've never heard of Jennifer Pastiloff before, and she's a little full on for my laid back Aussie sensibilities, but there were moments in the video where I thought, "sing it sister." 

Maybe someday this pain will be useful.

I'm not one for the woo woo inspirational stuff. The vast majority of which I find superficial, unattainable, nails on a chalkboard. (This of course could partly be attributed to the sheer volume of perky memes I've been sent since I became ill. Just so folk know "Healthy mind, healthy body" is not the kind of meme you should send someone with a progressive genetic condition. You may be sent a sarcastic naked mole rat pic or something similar if you do.) But this one line stood out as I was watching.

What if everything I go through, all the shit, all the pain and the fear and the disappointment and frustration, all of it, is useful?

I don't go in for the everything has meaning line. Or that everything happens for a reason. Sometimes shit happens. No rhyme. No reason. It just happens. But I do sometimes think we can choose to find a use for what happens. And in a sense I think this is where blogging and writing fit.

While I would gladly have a do over for the last 8 nearly 9 years, or take a miracle cure like that! There has been good in there. I have met some of the most amazing people I now call friend thanks to this defunct body of mine. In particular, I met my best friend Kerri for who I will forever be grateful. But beyond that, in expressing my journey (there has to be a better word, the whole journey has been coopted by a lot of woo woo, but its all I can think of at this hour) it has given a voice and safe space to others.

In sharing the changes with my body and the way I feel about it warts and all, it has allowed others to express their own experiences, or simply feel not alone. The power of not feeling alone is incredible. It normalises an incredibly abnormal experience. It's a soothing balm for the spirit and relieves a burden whose bulk you often don't realise until it is gone.

In sharing the hurts, tears and doubts it lets others also express their own pain. A pain that is often hidden behind the permanently perky mind set that says you must always put on a brave face. And should you dare to say "it's hard" there is always someone who'll pipe up with a quick "well at least it's not...." or "it could be worse" to silence the speaker lest they make them feel uncomfortable.

In sharing the small victories and the laughs it lets others know that they too can have those victories and joys. In being ridiculous in the face of illness it can give others permission to also be ridiculous (a necessity to survive this life.)

All of this pain, all of the vomit and the medications and procedures and frustrations are worth it if in the sharing it can help one other person in some corner of the world.

Maybe someday this pain will be useful.

Maybe it already is.

Michelle

I will not hide my shit nor will I hide my magnificence. What are you hiding about yourself? Are you willing to be vulnerable? Quite often it's the things we try and hide that draw people to us. Are you afraid of "being found out"? Post all your thoughts below and feel free to share.I love you. You're enough.Xo www.jenniferpastiloff.com
Posted by Jennifer Pastiloff on Friday, 17 April 2015

Not quite 42 things I've learned over the last not quite 42 years.

(source)

One week from today I turn 42. I am hoping that I'll find the answer to life the universe and everything. If not, well I'm not sure what I'll do. Probably sit apathetically on my couch and pluck salty chip crumbs off my dressing gown like most other days.

42 seemed so old to my child's mind as I sat watching episodes of Hitch Hikers Guide to the Galaxy on Mum's tiny portable black and white. I would plonk myself on the end of her lace covered bed and sit, glued to the TV, chomping on my plate of dry Weet-bix, topped with a thick layer of margarine and huge globs of glistening strawberry jam, taking in lessons about the importance of always having a towel. 42 seemed the fare of science fiction, not something I would ever apply to myself.

I don't feel 42, or almost 42, whatever 42 feels like. My body feels what I imagine 80 feels like (until I see a shot from the Masters Games and realise that I wish I was 80.) In my head I am still stuck in my late teens and early 20's. I still believe (You Gotta) Fight For Your Right (To Party!) and think The Only Way is Up. And that there is nothing wrong with being Too Funky. I still want to party like it's 1999 and I can't even think of 42 things I've learnt since I sat in Mum's bedroom in our old farmhouse all those years ago. I can't be bothered with lists but feel I should probably make the effort to impart some of my 42 years of knowledge. So here goes.

• No one knows what they are doing. Some are good at hiding that fact, but most of us are just winging it.
• If you want to dye your hair blue, do it. Don't wait. Don't worry what anyone else thinks. 
• There will always be someone telling you what you are doing, like, or think, is wrong. For the most part those people are twats and don't deserve your time. There are a couple in amongst the yammering crowd who do deserve your time. Spotting those people is the big challenge. Because if it's you acting like a twat, you want someone to set you straight.
• You will have doubts. Big buckets of doubts. Recognise them. Accept them. Challenge them. Like most people telling you that you are doing life wrong, those doubts you are carrying around are arseholes. Don't let arseholes run your life.
• Don't be a dick. If you are a dick, apologise. 
• Screw trends. Wear what you want. If it makes you happy wear it. Confidence shines far more than squishing into the latest trend in jeans. 
• If you believe in something don't be afraid to have a say. Fight for the good. Shout it from the roof tops. People will shout back, but if you believe passionately it's worth the effort.
• If an opportunity comes your way take it. You can lie awake at night worrying about it afterwards, or worry about peeing in your pants as you roll up to the stage, but odds are you can do it. Or stress will wipe the memory from your mind so it is all a blur and you'll agree to the next opportunity to speak in public. 
• Breathe.
• Give yourself the compassion you 'd give others.
• Eat the chocolate. 
• Life sucks at times and it's okay to say so.
• Life is amazing and beautiful at times and it's okay to enjoy it.
• Dig your toes in the earth. Or the sand, or the water. 
• Always challenge your beliefs. If they are worthy they'll stand the test. If not, you have new knowledge. 
• Change is good. Same old same old leads to stagnation.
• Different isn't a bad word. Embrace the infinite variety of life. You don't have to want to live your life the same way as someone else, to respect and accept their choices. The world opens up into a beautiful place when you yourself are open.
• The world will not end because you don't eat the kale and think green smoothies look like the Slime in a Can, you used to get in your showbags when you were a kid. It is okay to say you would rather eat the slime, or a Tim Tam, instead. 
• You have more to offer the world than beauty. Beauty is a construct. An ever changing and ever limiting construct. You can be intelligent, strong, kind, brave, or all kinds of things other than beautiful. Open up a dictionary and find ALL your words. 
• Similarly, happy. We have a happiness industry these days and yet happiness seems more elusive than ever for many. Happy is a basic word to explain a complicated concept. My happy isn't your happy. And that's okay. It's also okay to NOT be happy sometimes. We have a variety of emotions, use them. 
• Laugh. 
• Fart jokes are always funny.
• Read. Read a lot. Read crap as well as the classics. Just read. 
• Watch bad TV. If Judge Judy floats you boat, watch. If you like your Housewives, watch them. I would never have learnt about the Smize, if not for watching America's Next Top Model. 
• Hate is a blight on the world. We are so busy hating others we cannot see our own flaws. When we hate, we dehumanise. And when we dehumanise it makes us capable of acts and thoughts we would never normally entertain. Hate serves no one and minimizes us all.
• You will make mistakes. Lots of mistakes.  
• You will have the opportunity to do good. Big and small good. Take those opportunities. Not for any personal reward. Just because it adds to the communal ether.
• Religious or political affiliations do not make you a good person. Actions are what matter. Especially how you act towards those who are vulnerable, different, or can do nothing for you in return.
• Wear make up or don't wear make up. Neither decision makes you a better or worse person. Same with tattoos and hairstyles and peircings and.....
• You are not your past. 
• Someone who holds your hand as you sleep, is worth their weight in gold. 
• Sometimes you just need to do something forbidden even if you pay for it later. I'm talking a forbidden glass of wine, not bank robbery. Rebellion, even small rebellion, is good for the soul. 
• Politicians suck.
• Media reporting sucks.
• Media reporting of politics sucks.
• Don't believe everything you see on TV or read on the internet. Be skeptical. 
• There are far to many hate and fear mongers in the world. Be a do gooder. I'm not sure when doing good became a bad thing, but screw that. Wear that do gooder label with pride.
• Love, Kindness and Hope should be sprinkled liberally. 
• When shit happens you'll think you wont make it through. You will. It just doesn't feel like it at the time. But you will.
• You are worth it. 
• It's okay to change your mind. When you learn better, do better. 
• Life is full of possibility.
• Dog cuddles are smelly and wonderful. 
• Sing badly and sing often.
• Singing along to Vogue and doing all the moves, is a great panacea on the bad days.
• I still have no clue what I'm doing.

Okay so that was longer than I expected. There's probably more. Maybe even 42. But I need to pee and there are also the meds I just realised I forgot to take. 

No doubt after next Monday I'll still have no clue about life, the universe or everything. I'll still be muddling through. And that's okay. Muddling has gotten me this far. It'll do for a while yet.

I have two birthday wishes.

1) If you know someone living with chronic illness give them a hug and let them know you care. Because this shit is hard.

2) If you are living with chronic illness, know you are a superhero. Because this shit is hard.

(source)

Michelle

And because in my head I'll always be that teenager singing into her hairbrush in front of her cassette recorder, I give you one of my all time favourite 80's songs, Don't Leave Me This Way by The Communards (1986) with the amazing vocals of Jimmy Somerville (of Bronski Beat fame.) 

No News Week: The Womankind Challenge

Back in February Womankind magazine put out a challenge. Have a week with no news. Write about it and send it in for a chance to have your story published. I had the week without news. I even wrote about it. Before promptly forgetting to send it into the magazine. In the process of cleaning up my cluttered desk top I found it again, two months late. So here it is my experience of a week with no news. 

I wake each day as our neighbour's growling four-wheel drive reverses past our headboard and out into the street. Thin walls and a driveway less than a metre from our bedroom negating any need for an alarm clock. I turn my head and reach for my phone. The routine ingrained. But not today. Today I pause. No news. The parameters are clear. The challenge accepted. And already I am chaffing at the bit. My fingers hover over my phone aching. But one click and there it'll be. The weather forecast on the screen. The light flashing to let me know of messages and alerts from Twitter, Instagram or Facebook. Social media my all to willing dealer feeding my news addiction. Politics, asylum seekers, disability advocacy and health reform, women’s issues, I follow it all and I follow it ravenously. Cold turkey is not an appetising option. But how to avoid news not just for the day but the week?

News filters into every aspect of life. The Borg were right, resistance is futile, at least if you interact with the world. I can refuse to click on my phone or open my laptop. I can turn off the television, and car radio. But head to a public space and all bets are off. Radios play in the shops and boards sit out front of the local news agency holding headlines from the major news outlets. Glossy magazines glare at me at the checkout and flat screens play overhead. Even in coffee shops wisps of news flow from conversations at surrounding tables. Short of becoming a hermit it is near impossible to avoid.

I recall as a child the hourly news on the radio, the daily newspaper and the nightly news. Now a 24 hour news cycle and rabid adoption of devices and a need to know, make the news part and parcel of life. A constant whir in the background even when you're not consciously attending.

There's a pressing feeling of being out of touch. Of missing out. I pride myself on being up to date on major issues both here and abroad. I discuss international politics with my children and watch news documentaries as a family. To not have that link. To feel out of place. Out of line with the rest of the world. Of time moving on and falling behind. Twitching fingers and twitching mind. Used to being fed continuously. Instant gratification available at the tap of my thumb.

Silence. A week on, no news means silence. But the silence is not without noise. Instead of the noise of multiple lines of information, it is the noise of the bird song and breeze. The turn of a page as it scrapes against my jeans. The soft snuffle of my dog tangled around my feet. St Louis Blues coming from the lounge and the tap of the keyboard as I write without interruption.

Clarity with the silence. A rejection of news and technology for a less cluttered mind. A welcomed tradeoff that I had underestimated. Half-way through I realised I wasn't missing the news. I wasn't missing the noise. Once the restless agitation of cold turkey had passed I felt the calm. News is so much bad. Pain and horror. Disappointment at the political discourse and a sense of hopelessness at the tone of the world at large. The meaninglessness of celebrity, dross that fills the airwaves. The good works and silent struggles forgotten in favour of the sensationalism and repetition. Not putting my feet in that foetid pool is quite good for the soul. My family interrupted my embargo to tell me of the passing of Leonard Nemoy. Spock no more. But it was the only news I consumed in the seven days.

The world meanders on changing little over the week. When the screens are lifted and I emerge once more into the world of news the same conversations continue. The rhetoric of the politicians the same. The evening news follows the same patterns. The stream of Twitter continues as outrage mixed with unoriginal memes. The lives of friends mattered but the news as it is presented online and in print are seen with a level of clarity. Step back. Be more discerning. Turn it off and listen to the bird song more.

Michelle

How the other half live.

Lying on my side I could feel the hard tiles under my shoulder and hip. Poor absorption of food for years on end has left me with little padding on the tender bones that poke out. I could take out an eye with the knob of bone sticking sharply from my elbow or the pointy bit of sternum that sticks out just above the ever present pulse that spasms and bounces. And here I was again, communing with the short and curlies, dust, and ever present Freyja hair on my grey terry toweling bath mat. At least this time it wasn't through collapsing limbs or plummeting blood pressure. Though when I say "At least" what I really mean is a long line of expletives stretching off into the distance, far beyond the dusty underside of my bed, that I can see through the doorway of the ensuite.

I try to find a more comfortable position but no matter how I brace my body it all hurts. The green and white box in front of me has two delightfully bizarre yoga positions to choose from. Bum up or on my side. Put one leg here, another over there. Bend this bit and that. I wonder if I simply adopt Child's pose, can I cry "Mummy!" Physical comfort is further pushed down as I contemplate the process ahead. If I had any muscle strength left my nether regions would be bracing right about now.

Delay. Delay. Double check the box. Close my eyes and think happy thoughts. But no amount of puppies and kittens is going to help. No happy place is to be found. But the pain in my abdomen begs "Do it. Please just do it." A desperate rock hard abdomen is hard to argue with. So I don the gloves, lube up the applicator and resign myself to the inevitable.

I lie on the tiles as I wait for the contents of the bottle to work. It's been over a week since I last went. I have taken a laundry list of medications to get things moving. I employed all the maneuvers given by the local continence nurses. I watched the videos and studied the leaflets. I "moo" like a cow while bent in two, feet up on an overturned basket. And still nothing. Things go in but they never come out. My gut the Bermuda Triangle. And so I had to cry uncle and go from softeners and suppositories to the big guns, the enema. Stories of people so impacted they vomit up poo a good incentive to forego any last remnants of dignity.

1 in 2 people live with chronic illness. In disorders like Dysautonomia continence is a hidden issue. An unpalatable issue, but a common one all the same. When I hear people say all I  need is a positive attitude I wonder if they could be all Pollyanna as they stick a tube up their bum and squeeze fluid up into the dark recesses of their body. Or when they have to explain the intimate details of their bowel and bladder habits to strangers. Or when they have to see a physiotherapist to learn how to poo again. Or when they have to consider more medications and stimulators and flushing and......all so they can do the most basic of bodily functions.

The nausea, the pain, the worries about malnutrition. They are part of life now. But it is hidden from sight. I went for bloods and the nurse said I looked great. Then she looked at my sour face and mumbled that she guessed I didn't come in when I was really unwell. And that's the problem. So much is hidden from public view. And so many don't want to know.

You see chronic illness isn't something you simply positive your way out of. It's not a question of attitude. It is learning to manage sometimes incredibly confronting and unpalatable symptoms and their equally confronting and unpalatable solutions, or partial solutions as the case may be. If reading this makes you feel uncomfortable, imagine what it is like to live with it every day. To have use suppositories and enemas because there is no alternative. A reader can stop reading. They can turn away and forget. For those of us living with chronic illness there is no choice. We must live with the unpalatable. We don't have the luxury to turn away and pretend it's not happening.

"I could never do that!"

Actually you can. You do what you have to do. You do things you never thought you could. Because there is no choice. It is simply life.

Those of us that live with complex chronic illness and disability are well aware of just what we have to do. What we can do. We do it and we get on with life.

And today I up my dose as it all starts to slow once more. And I talk to my nurse and I break out the gloves. And contemplate another day spent lying on the tiles.

Michelle

If you have problems with continence there are people who can help. Contact the Continence Foundation of Australia for more information on how to locate a clinic or practitioner. There are also links to videos for pelvic floor exercises and helpful tips. There is even a toilet map app which I reviewed here. Continence issues can affect anyone at any age. Don't suffer in silence, seek help and guidance. You are not alone and you don't have to be embarrassed. There are similar organisations in most Western countries.