Friday 26 June 2015

Happy 22nd Anniversary, Mr Grumpy.

(He even puts up with me trying to do arty shots in cafes)

One minute you're sitting in your parent's loungeroom eating KFC and waiting for your friend Kristen to arrive to do your wedding makeup, and the next you are writing a post about celebrating 22 years of marriage. I'm not sure how that happened but it did. I am now a grown up, with one adult and another nearly adult child, and the makings of a silver fox who thinks it hilarious to hit me in the face with the edge of his pillow each night.

22 years. I could be all soppy and sentimental. He is the love of my life. And I can't imagine my life without him. He makes me feel safe and loved. And I know he has my back and supports all my crazy schemes. That's all true. It's also true that he drives me insane at times and that I have been known to throw that stupid pillow of his, that he thinks is so funny, far across the room. Or hidden it. So he has to search high and low while I end up in increasing fits of laughter. While he laugh/growls "Enough Michelle. Just tell me where you put it." Making me laugh so hard it hurts and I sit perilously on the edge of passing out (so worth it.)

We met at 17 and 18 and I sometimes think we are still stuck there, having not really grown up since that point. Young at heart even if there are now saggy bits and wrinkly bits, belt tilts, and grey/glitter hairs in all the hairy realms of the body. We still giggle and laugh at stupid things. And our youngest has been known to tell us to grow up. Maybe that's why we've lasted so long? Giggle like teenagers at every fart or when the commentators mention Goldsack on the football, and you too can make it to 22 years, or 24 if you count the years pre-marriage.

When people ask how are we still together we have been known to simultaneously say "Apathy." Before pissing ourselves laughing. And maybe that's the key. We laugh. A lot.

Life is hard. There are disappointments and heartache. Laughter makes it all bearable. And finding someone who can laugh with you through it all makes the scales fall more in favour of fun and joy. And less about the hard stuff even when you're smack in the middle of it.

Recently we realised we have morphed into the same person. When Ella Hooper put up a photo of her and Vika and Linda Bull, we both left a comment. The same comment. 8 hours apart.

This is what so long together can do to a couple. Maybe folie a deux is the secret? It seems to work for us.

I am often told I am lucky to have him. I am lucky he's stuck around. I want to punch people who say that. Nine times out of ten the implication is that I am such a horrible burden that it is amazing he's still here and he's pretty much reached saint levels of tolerance and self-sacrifice. Though I'm not sure if saints laugh hysterically when they don't tell you they have done the poo from hell and you step into the bathroom and are nearly taken out by chemical warfare courtesy of their nether regions. I wonder if that's what folk mean when they say I'm lucky.

But I am lucky. And not just because he stuck around. I am lucky that through some fluke of life I met The One way back in 1991. I am lucky that he lets me be me, and even celebrates my crazy. I am lucky that he supports everything I do and even if he doesn't agree he'll defend me to anyone who gives me crap. I am lucky that even when we fight it can end with "I love you, you stupid arsehole." I am lucky that we frequently end up in juvenile giggles over stupid childish things like pillows in faces and "I'm not touching you" when we are both in our 40's. I am lucky that despite his faults and mine we have somehow morphed into the same person who writes the same thing on a singer's Facebook post.

I am lucky he's mine. And I am his. Two whole people who somehow gel together in some messy, imperfect, juvenile and love-filled way.

Happy 22nd Anniversary Mr Grumpy.

Michelle xx

Sing it Nina.

Thursday 25 June 2015

The pressure to be ON.

A few years back I mentioned on Facebook that I had an awkward exchange at a local supermarket. A worker had come up alongside me in an aisle and demanded to know why I was using a walking stick. I was not in the mood. I was tired, trying not to vomit, and simply wanted to buy my food and go home. I gave her a terse, “because I need to” and walked off. I mentioned how rude I felt the encounter was and how frustrating it is that strangers think they have the right to my private medical information and an explanation of my life circumstances. A follower took exception to my refusal to use the opportunity to educate the woman/complete stranger. I was lambasted and told I had a “DUTY” (yes in all caps) to educate people. How was the world to know about Dysautonomia if I refused to educate people. I'll admit I did not respond well to what became an increasingly aggressive and judgemental level of chastisement. I could have been more diplomatic. I could have taken the time to educate her about her ALL CAPS attitude, but I really couldn't be bothered. I was not about to defend my right to be human. And I was not about to try and justify my position by listing off all the work I had done or continued to do. But it did highlight the pressure to be ON (that's for you ALL CAPS lady) 24/7 that many patient advocates* and patients in general face.

Everyday we hear negative comments and deal with ignorant assumptions about illness and disability. We hear it from society, in the media, from friends, family and even doctors. And we all become educators by default. It can feel like you are stuck in an exhausting Groundhog Day at times.

Recently, Jenni Prokopy aka Chronic Babe wrote in a post about haters and advocacy that sometimes it's okay to just wish them a nice day and walk away:

"Some activists will argue with me, saying we should educate haters in order to build a stronger community.

There’s some validity to that, for sure. If I didn’t agree, I wouldn’t have kept going for 10 years—and I certainly wouldn’t do so much advocacy work. But just because we’re sick, and just because we choose to strive beyond the limitations of our illnesses, doesn’t mean we owe the world an education."

We don't owe the world an education.

Oh how I love that.

When I became ill back in 2006 the lack of awareness about any form of Dysautonomia was a huge impediment to finding a specialist and finding a diagnosis. When I tried to explain to others what was wrong, even those who I worked with in health, I was met with a lot of blank stares. With education having been a large part of my then job description, education, awareness raising and advocacy was a logical move as I became a full time patient. I have now spent years doing just that. Not only for Dysautonomia, but invisible and chronic illness and disability in general. I enjoy it and it is a passion.

But what I did not realise was that in becoming ill I was also assigned a secondary job complete with Key Performance Indicators (KPIs) and people would happily and at times aggressively, point out when I didn't meet those KPIs. It was clear I was expected to be ON at all times. And that my workload, as decreed by others, was increasing exponentially.

The problem with being ON 24/7, and I'll admit I did internalise that philosophy and often beat myself up for not meeting expectations, is that I am also a human being. A chronically ill human being.

I can be surly and a dick at times. I can be tired and over it. I can be sarcastic and mouthy. I can be stubborn and have a low threshold for shit. When you add living with a chronic illness that leaves you ill or really ill 24/7, these less flattering aspects of my personality can rise to the top as my tolerance and energy levels plummet.

Sometimes I want to have a life outside of illness. It's vital for maintaining emotional and mental health. Sometimes I want to binge watch Supernatural or The Walking Dead. Sometimes I want to potter in my garden. Or fart around the house and eat way too much chocolate. Sometimes I let opportunities to educate slip by. Because sometimes, like that day a few years ago, I just want to buy some basic groceries and keep the contents on my stomach in my stomach, without having to explain why I am using a walking stick.

Some days when someone makes a crap comment about disability or my still being sick or asks intrusively about my mobility aid I want to simply turn around and say,

“You are being a dick. Stop being a dick.”

If I have taken the time and effort to address the last 48 instances of ignorance I've experienced, is it okay if I let the 49th educative opportunity slide? The answer is, yes. Some people don't want to be educated. You can give 110% and still the person wont have heard a word you said. Sometimes you have to pick your battles and conserve your precious energy. And sometimes I just want to reply in a totally human way.

I don't owe the world an education.

No patient or patient advocate owes the world an education. The vast majority of patient advocates work out of love and passion, and receive little to no (much much higher on the no side of the ledger) remuneration for their time. The patient advocacy network is sustained by a large group of volunteer professionals. I say professionals due to the sheer amount of expertise in the network developed through time, hard work and love. But they are also a profession of people who are frequently managing their own significant illness while advocating for others.

I don't know a single patient advocate who begrudges the time and precious energy they spend educating or supporting others. But I also know how many are making themselves sick in the process. I know how many end up with serious flares and hospitalisations. I know how much goes on behind the scenes as self-care is ignored or the severity of illness hidden while they continue the advocacy work they love.

I also know that in paid employment workers are entitled to days off and leave. I don't know why we struggle to recognise that for the largely volunteer network of advocates we are just as entitled to a break and down time. Time just to be a person. Although in saying that I know from personal experience patient advocates all have one thing in common; a pressing and often overwhelming need to fix many of the problems encountered, yesterday. When in truth and in our impatient logical selves, we know the institutional and community issues we face will take years and a huge combined effort to change.

When I read Jenni's post I couldn't help but think of that exchange on Facebook. Not that it is the only one I've had over the years, but it was the first one where the level of vehemence made me sit back and go “Whoa.” Quickly followed by “Bite me.”

I say this knowing there are people who chose to live and breathe advocacy and education 24/7. As Jenni points out there would be others who would disagree with her own stance on the issue of owed education. And that's okay. If it works for them I say more power to them. But what it comes down to is that it is a choice that each of us must make. And there must be a recognition of the cost of that dedication, and that in the end, that we are all just human beings doing the best we can.

It's okay not to be ON 24/7.

It's okay to not analyse and understand every person's motivation in making a comment.

It's okay to expect others to take responsibility for their own behaviour.

It's okay to just call someone out on their dick behaviour rather than educating.

It's okay to just be a person.

And it's always okay to take time to take care of you.


*I have used the term patient advocate throughout this post, but it could have easily been disability advocate. I am aware that different people identify differently and I fluctuate between both when identifying myself as I don't see them as truly separate. I did have them as an and or, but it just became messy.

Big love to all the advocates who dedicate themselves to helping others. 

Monday 15 June 2015

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 :)


Friday 12 June 2015

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,

A photo posted by Extraordinary Routines (@extraordinary_routines) on

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.


*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

Wednesday 10 June 2015

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

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.