Exotic Particles.

[Image: A photograph of a blond haired woman, the fictional Samantha Carter, played by Amanda Tapping, in the Stargate franchise, on a blue grey background. I may have watched all episodes of all three Stargate shows and movies more times that I can count. source]

I don't have Postural Orthostatic Tachycardia Syndrome (POTS). I've never met the criteria. Well except for one fleeting moment in 2011, where a neurologist turned to me after doing an autonomic tilt table test and said, "You have POTS, well POTS Plus, but not really POTS." It was there for a nanosecond. But not really. The fact that two years later I had a pacemaker stuck in my chest to make sure I stay out of perpetual bradycardia (low heart rate) and it artificially pumps me up to 100bpm when it detects activity is clear evidence that even that nanosecond of POTSie membership is a long distant memory.

I began with a diagnosis of Neurocardiogenic Syncope (NCS) in 2007, which morphed into Orthostatic Intolerance (OI), which eventually morphed into Michelle's disease as my shoulder patting, pity-faced Neurologist and long term Cardiologist now term it.

I have a form of Dysautonomia, but it's one that doesn't fit neatly into any of the present subgroup criteria and is likely, though as my Neurologist points out not necessarily, related to whatever neuromuscular mess I have going on these days. But the autonomic side of the ledger is the one that has caused, and continues to cause, the most upheaval in my life. It is the one that stopped me working and driving. The one that left me mostly housebound and way too frequently drooling on the carpet or bathroom tiles, awoken by the loving and gross face and neck licking of a worried Great Dane. From my head to my toe I have autonomic symptoms, but 10 years down the track I have no real name and just increasing complexity and decreasing clarity. I am living with He who shall not be named.

It makes for a weird midlands of diagnosis and membership.

It doesn't make my day-to-day any better.

It doesn't make for easier management.

My Autonomic Nervous System in still shot.

It doesn't make for better, easier, milder or any of the more positive ways to describe the presentation of a disorder like this.

It sucks as much as any of the subtypes, and in distinct ways that those who have a concrete diagnosis to cling too, will likely never have to deal with.

There are simply some of us who will continue to have significant autonomic symptoms, a completely dysfunctional autonomic system, a formless form of Dysautonomia, who will never fit in the available criteria. 

It is Dysautonomia Awareness Month and I know that it's highly unlikely that people like myself will be represented by any of the major organisations. Admittedly, our weird grey existence does make us hard to advocate for. We don't fit the easy awareness raising paradigms. There are forms with clear guidelines, larger memberships and great momentum making awareness less complex. But there is no quick soundbite for people like myself. And a lack of voice and presence in the awareness game, means it is easy to think we do not exist....

....and yet every day I receive emails and messages from people like myself.

Ill, and despite extensive investigations, stuck in the no mans land of the vague diagnosis, and feeling very alone.

I'm not sure how to rectify the situation. It's much easier to raise awareness for discreet illnesses.

It's much easier to link in doctors, family or friends.

But,

the human body doesn't pay attention to consensus statements.

It doesn't pay attention to the nice neat guidelines set out for clinicians to understand, diagnose and manage.

If you'e ever watched one of the Stargate franchises, or any science fiction series, you'll have heard of exotic particles. You just know that when the plucky group of space adventurers try to find a new energy source there will no doubt be ramifications in the form of new and unpredictable exotic particles that threaten to rip the universe asunder.

That's how my body and the body of many others decides to break or malfunction. We are chock full of exotic particles. And unlike every Stargate episode, we don't have a Samantha Carter, Rodney McKay or Nicholas Rush to make sense of things and save the day at the last minute. 

When things go wrong, like say your ANS decides to go arse up one day, and your body decides to forgo a nice neat presentation instead kicking up a heap of left of centre symptoms, it can make life, including diagnosis, extremely difficult. With no label legitimacy is missing. Prognosis is missing. Finding your support system is incredibly difficult. And the solid ground you need to plant your feet and ride things out is still just a pipe dream.

When I look around at awareness, not just this month but all year round, it often feels like people like myself are forgotten. Don't get me wrong I have no issue with raising awareness for POTS, it needs it, desperately. There continue to be misunderstandings as to its effects on quality of life, misdiagnosis abounds, and treatment is still trial and error. But these issues plague all forms of Dysautonomia. And I wonder where those with other forms, and we of the exotic particles variety, fit in the awareness scheme of things.

The reality is that there are many patients, even those diagnosed with other subtypes, who are not getting as much airtime. There is more to Dysautonomia than POTS. The problematic situation where patients feel disappointment when they are diagnosed with another form, as if somehow they have a lesser form of Dysautonomia, is symptomatic of a focus on one subtype to the exclusion of others. Or that Dysautonomia is frequently thought to be interchangeable with POTS, despite it being an umbrella term covering many forms, or that no matter how many times I have written that I have a form of Dysautonomia that doesn't fit anywhere over the last seven years, people still think that means I have a form of POTS. POTS and Dysautonomia have somehow morphed into one entity, leaving many feeling as if, despite living with a form of Dysautonomia, they have no place in the discourse.

[Image: a tan umbrella with the word Dysautonmia written on it over a white background. Underneath the umbrella are a series of subtypes of Dysautonomia: POTS, OI, NMH, NCS, PAF, AAG, PanDys, MSA, FD. Infographic is from www.reflectionsofabear.com]

This is not to say that less well known forms such as Autoimmune Autonomic Gangliopathy (AAG) or other common yet less discussed form such Neurocardiogenic Syncope (NCS), don't get some attention, they do, but the predominant form continues to be POTS. Patients and doctors alike are becoming focused on this form, a trend repeatedly demonstrated in anecdotes in forums from around the world. And there is a frequent misbelief that it is more severe than other forms. In reality the more common forms of Dysautonomia such a NCS, POTS or OI, range from mild to severe, no particular form is outrightly worse than the others (NB certain rarer forms of Dysautonomia are more severe, for example Multiple System Atrophy (MSA) which is fatal) as all patients present with different levels of symptomatology, different levels of impact on their daily lives, and differing reactions to treatment. If you are fainting 20 times a day thanks to OH or NCS, and require a helmet and constant supervision, the impact on simple activities of daily living (ADLs) and quality of life is highly significant. For someone like myself who has no name beyond a vague Dysautonomia to cling to, I still continue to progress. My lack of nosology sadly not protective against further deterioration and loss of functioning.

Many patients are stuck in this weird landlessness, whereby, they are even less visible in a group of disorders that are inherently less visible and poorly diagnosed. 

I am lucky in that I have a platform on which to bang on about Dysautonomia awareness in my various social media channels. And I can bring awareness to people such as myself who are the Nigel No Friends of the Dysautonomia world. The not quite rights. Those who don't fit. The Weirdos. But I am one woman tapping away on her laptop, and I am concerned for the many who don't have the confidence to put themselves and their stories out there. Who are weighed down not only by illness but by feeling of not belonging and under-representation. The power conveyed by diagnosis of legitimacy, of guidance, and belonging, is one many patients whose symptoms don't correspond to current criteria do not have, and are unlikely to have in the near future. We cling on the edge of support groups and gather crumbs of knowledge. But seeing an official organisation embrace them, or I should say us, and our odd exotic particle spewing bodies would be extremely powerful.

I do want to say I have nothing but admiration for those running the various Dysautonomia organisations around the world. It's a tireless and frequently thankless job. Run primarily by volunteers who are often ill themselves. From my own experience I know how hard and draining it is simply managing a large FB group, which I had to step back from as my health deteriorated. I have been advocating for Dysautonomia patients in general for seven years now, through this blog, various social media channels, on TV and in interviews and as much as it is rewarding it is tough and downright exhausting at times. But I also feel a deep responsibility to speak for the large numbers of people who contact me feeling lost, confused and anchorless thanks to the pot luck way their symptoms happened to present. We are all in this together. Every patient of every subgroup even those of us floating in the ether knowing their grouping comes under the tile of Exotic Particles.

In the mean time and until we can find a Samantha Carter to understand and fix us, I will continue to advocate for those of us who don't quite fit.

After all, a quick look at the images representing the creation of exotic particles shows we are pretty spectacular and unique.

[Image: artists imagining of the creation of exotic particles at Cern in the Hadron Collider. Source]

Michelle

Given how speccy the creation of exotic particles, Katy Perry's Firework seems very fitting.

Disabled people need a companion. Except when they don't.

"Where's your companion?"

"Is your companion outside?"

"Shall we wait for your companion?"

"Is your companion at the bar?"

"Your companion can sit here."

On Thursday I headed to Melbourne for an event as part of a local festival. I was excited. It was the first time I'd been able to bring my electric wheelchair, Lucille, to the city.

The process of getting a wheelchair did not include modifications to our car, or a carrier (which we eventually purchased secondhand) or a cover for travel (again something we purchased privately), not even ramps into the house (although that was eventually sorted through yet another fund). Finally we had both carrier and a brilliant cherry red cover that could stand up to Victorian weather and freeway travel. 

Here we were in sunny, wet, sunny, wet, sunny, cold Melbourne on the first day of Spring. It was night. I'd been to a bar for a tipple before the event. I caught up with a writer friend. Music was blaring. The streets were full. I'd picked one of my favourite dresses to wear. My ticket was in my bright red handbag. I was excited and sorted. For the first time in years I was able to attend an event alone. Not even a drop off or push to my seat. I got to the front of the theatre bid my husband and son a quick farewell and headed inside while they went off to grab a glass of wine and some food. The freedom and independence was both overwhelming and exhilarating.

"Where's your companion?

"I don't have one. It's just me."

All good. Keep rolling.


Then.

Companion question 2

Companion question 3

Companion question 4

Companion question........



Part of it I know was making sure the disabled woman was sorted. It was their job. And don't get me wrong, everyone was pleasant. There was no ill intent.

But it was my chair that prompted the questions. It was my chair that caused concern.

Despite me obviously rolling in alone.

Despite happily sitting alone.

Despite me having said I was alone.



No one went up to any other solo ambulant patron to repeatedly inquire as to the location of their companion. Not to say there weren't others there with disability. Not all disabilities are visible. In fact the majority of disabilities aren't visible. I was one of those invisible disabled people for a lot of years. I required a companion back then. Before Lucille. But no one realised that my husband was being dragged along to an event because I was unable to safely attend alone. I am far more functional with Lucille than I was without her. I am far more visible with Lucille than without her. Yet the more visible my disability the less capable people think I am.

A woman in a wheelchair alone? That's not right. Where's her carer? Where's her companion? Something could go wrong.

Disabled people need a companion. Except when they don't. 

For the first time in years thanks to Lucille I could head out alone. I could be independent. I could go where I wanted when I wanted. I could breathe. But the idea of a disabled person without a carer or companion is anathema, and I was reminded of it once more. Paternalistic attitudes persist. Sometimes enforced by the very processes designed to aid us. And they take the edge off what was a fantastic night.

Asked once, I would have palmed it off. But repeatedly. Well it's hard to ignore.

When I'm already in my dedicated wheelchair seating. When I'm sitting, happily farting around on my phone waiting for things to start.

Finally alone. And suddenly I realise how unexpected that is.

The default position is that disabled people need a companion. 

We can't go out alone.

We don't go out alone.

In reality this is one small example, it happens time and time again since Lucille and I have been able to do things solo, but its also a subtle part of the disability narrative that permeates all aspects of society. Visibly disabled and alone is unexpected. Visibly disabled and alone makes people nervous. Visibly disabled and alone and when asked, I say I'm fine or I can mange, it is frequently ignored. Visibly disabled and alone? The computer says, "no".

The default position is that disabled people cannot manage. 

The default position is that we are less.

The default is reinforced.

All the live long day(s).

When we are patted. Talked to in a singsong Play School voice. When people are overly solicitous. When people are nervous. Will we need something? We must need something? Will there be a problem? Will we bite? When we are pressured to go with an attendant. Go with an attendant NOW. Even when we say we're sorted. Even those times when with a partner who also says it's okay and it's sorted. Because my wheels represent inconvenience, potential problem, and lead to annoyed fluster. When we are in a shop with another person and we are ignored and spoken over like we are not there. When we are told that we are SO brave. When we are told that it's SO good to see us out. When we are told that we don't know our own lived experience. When others want to label us. Or tell us we should act or look a certain way. When people leap like they've just touched an electric fence instead of simply moving aside. It's not catching folks. You'll be okay.



I rolled out of the venue into the drizzle and the night. I managed to go to yet another bar, but my companions weren't my carers. I didn't need them to hold my hand. They were simply my husband and son. I rolled next to them and chatted. Ordered my own glass of wine. And drove Lucille with wild, slightly pickled, abandon through the streets of the CBD giggling and being a smart arse at 1:30am. Then dinked my adult son through the hotel hallways, speeding, laughing loudly, almost crashing, while zigzagging our way to our room.


Sometimes I need a companion. An advocate. A carer.

I'll let people know.

But when I don't?

I just want to go out by myself and enjoy the freedom and independence I haven't had in years. I don't want fluster. I just want to fly under the radar like everyone else. I just want to be. At an event, in a cafe, or at the shops.

I've fought damn hard for this independence.

Don't rain on my parade people.

[Image: a happy green haired woman sits in her red wheelchair in a red carpeted foyer. She is surrounded by people and wears a kick arse black dress with pompoms on the hem, red compression stockings and scarf and knee high boots she could never walk in.]

Bringing out Babs again as she says it so well.

Seeking Guest Posts for Dysautonomia Awareness Month: Theme this year is DIVERSITY

[Image: Background is my green velvet bird and flower pillow. Text reads: Seeking Guest Posts Dysautonomia Awareness Month Theme: DIVERSITY find details at livingwithbob.com]

Each year I try to have a different theme for Dysautonomia Awareness Month (October). I've had general open submission, a focus on Australian and New Zealand stories, and even an Arts program where patients expressed their life with Dysautonomia through everything from drawing to poetry and music ('twas rather awesome). Each of the guest posts in these themes have been brilliant and reflect an amazing and diverse group of people in our community. It's been and honour to be able to share so many voices. 

This year the focus is to be DIVERSITY. I want to focus on groups within the Dysautonomia community who are under-represented and have difficulties accessing medical care or diagnosis due to being part of these groups.  The impetus for this theme comes from the many emails and messages I receive with an ongoing theme of people feeling isolated from much of the Dysautonomia dialogue and media, which can occur for a whole host of reasons.

Information regarding Dysautonomia tends to focus primarily on POTS, younger patients, Caucasian patients, and women. It's the nature of many illness and disability groups that certain subgroups receive more attention (eg within dialogue around breast cancer there is little talk of men who, although a significantly smaller percentage, can also develop breast cancer and such a diagnosis comes with a whole host of issues specific to men), not through ill intent it just seems to happen, and Dysautonomia is no different. Intersectionality in all these communities is an area that needs far more work and exposure (#disabilitysowhite is an illuminating hashtag to follow on Twitter and I highly recommend checking it out). We know ethnicity, age, education, socioeconomic status, and geography, amongst many other factors can affect not only access to appropriate Dysautonomia diagnosis and treatment, but healthcare in general. Even simply having access to the Internet can make or break access to health care. Whilst I can bang on about these issues, it is only those with lived experience of these factors who can truly express their experience and needs with all the nuances that come from belonging to certain groups.

So I want to break out of the dominant pattern and offer up space on the blog for other less represented groups to share their stories. In reality Dysautonomia presents in many ways and doesn't discriminate based on sex, identity, geography, ethnicity etc. An appreciation and inclusion of diverse voices can only make our community stronger.

Bring on the DIVERSE voices!

SO

If you fit into one (or more) of the  groups below (or if there's one I've missed and you want to suggest) drop me a line. 

• Diagnoses under the Dysautonomia umbrella other than POTS (POTS will be heavily covered by all the Dysautonomia organisations during the month)
  I'm looking for submission from people with other forms eg, NCS/NMH/VVS, OI, AAG, OI, OH, AAG, PAF, MSA,, FD, or a more general Dysautonomia that doesn't fit a type.*
• Men
• People of Colour
• Culturally and Linguistically Diverse Groups
• Rural or remote
• Over 40 years of age
• LGBTQIA
• Disabled
• Countries where there is little to no awareness (I'd love to share stories from areas such as South and Central America, Europe, Asia, and Africa, I do get email queries from patients in these areas desperate for information, so I'd love to share more of their voices). 

*Having said that, if you are living in a remote location, live in a country with little awareness, or identify as LGBTQIA or fit into one of the other groups and have POTS, please feel free to apply as it is often these other aspects of life that can add another level of challenge in seeking care or living with chronic illness and disability.

How to Submit your story:

I'm looking for pieces focusing on how being part of one of the groups above has impacted positively or negatively on your diagnosis or access to treatment or simply living with chronic illness and disability? Do you have any solutions or ideas how to improve the situation? Or even how belonging to one of the above groups makes your Dysautonomia experience unique.

Submissions must include:

Short bio max 100 words.

Understanding that culturally, or for reasons of safety and privacy some posters may not wish to disclose their name, posters can be anonymous.

Max 500 words.

12 Times New Roman 

Please attach any photos or pictures using JPEG (Posts with photos tend to attract more traffic).

Depending on the number of submissions some pieces may not make it onto the blog. But I will attempt to get all submissions up during the month and some may be used in guest posts in the future.

I do reserve the right to edit to fit (but will let you know prior to publication), and wont accept any works that include hate speech. My blog is a place of inclusion regardless of sexuality, identity, ethnicity, religion, or lack there of etc. All who come with an open and welcoming heart are welcome.

Send to rustyhoe (at) livingwithbob (dot) com

Submissions close Saturday September 24th 2016

Looking forward to reading and sharing.

Michelle.

Disability erasure at it's finest. Thanks Brazilian Vogue.

[Image: a screen shot of a Vogue Brazil promotional photo of able-bodied models Cleo Pires and Paulo Vilhena cripping it up thanks to the miracle of photoshop. Who knew your paralympic dreams are simply a mouse click away?]

How do you celebrate paralympians without actually celebrating paralympians? By photoshopping Brazilian soap opera actors to look like they are missing limbs. Actual paralympians were there on set. To provide inspiration. Because that's what disabled athletes and disabled people in general do best. We provide inspiration. Not enough to actually be in the photos. Oh no. We couldn't have that. Not us icky confronting disabled people. Ew. Who'd want them in Vogue. It might make people uncomfortable. But we can make the disabled totally relateable and palatable by using able-bodied actors. It's not like paralympians could be worthy in their own right. They are only worthy when seen in reference to the able-bodied. Look, they're just like us. Brazilian Vogue has come out to say it wasn't their concept and that the actors involved were responsible. That they chose to run with the advertisement and can see nothing wrong with the concept. Well lets just all shift the blame and sweep that part under the carpet.

The caption runs that "We're All Paralympians", Except we're not. I'm disabled, I've got the progressive neurological condition, even a set of wheels to get around, and a disabled parking permit, and still, I'm not a paralympian. Neither are the Brazilian soap stars in question, or any other able-bodied folk. Or 99% of disabled folk. You know who are paralympians? The actual paralympians. The disabled athletes at the height of their professional sporting careers, they are the paralympians. And they are the ones who aren't good enough to be in an advertisement promoting the Rio Paralympics.

What hope do us mere mortal, boring, average, run of the mill disabled folk have, if even paralympians can't make the cut for an ad for an event in which they are the stars.

In an advertisement promoting the Paralympics. I'm probably going to keep mentioning that part as despite having first seen this advertisement a day or two ago I am still gobsmacked that they came up with this concept and it made it's way through all sorts of levels where someone could have spoken up with a gentle "Hey mate, you might just want to rethink this", or a more direct "You're being an ableist dick, dude" and simply vetoed the whole idea.

It's just the latest instalment in the very public farce that has also meant that there is a shortfall in funding for the Paralympics. That money set aside to enable disabled athletes from poorer nations to attend was instead used to clean the green pools at the Olympics. That venues are being dismantled and many sites where the paralympians will be housed are not accessible. But hey, you know, they're for disabled folks, so it doesn't matter quite as much.

Whilst this is a very public example of ableism, it is symptomatic of a wider community attitude not just in Brazil but around the world, that disabled bodies are unpalatable and that as a group we matter less. And most of us don't have the currency of being awesome athletes to offset our unpalatable disability. Though in truth while so many are all happy to claim the achievements of our paralympians, the same people are often the ones that bemoan our drain on public coffers for the National Disability Insurance Scheme (NDIS) or are indignant at the humble parking permit.

Time and again we see discussions of disability not involving the disabled people who live the consequences of those discussions. We are continually talked about or around. Others know better. Hell, an able-bodied actor can play disabled better than an actual disabled actor. It's all very "Don't back-chat me fella. I know boats!"

Time and again we see discussions of diversity that don't include those with disability. We are either not included, or the issue is not even raised. Even in discussions of feminism disability has often been seen as an after thought or inconvenience, or disabled women have been told how to express their views and even shut out by groups purporting to support all women.

Time and again we see token representation. Oh you have one person in a wheelchair on one panel in a fortnight long festival. Well you've met the quota. It's not like we could have two disabled people present. Or that there could be more than one type of disability represented. Oh no. We are a homogenous group obviously. We must all think and live the same way. Or as in the glaring case of the Perth Writers Festival earlier this year accessibility was such an after thought that a disabled person couldn't even get around to see events. Nothing like an inaccessible festival to tell you in no uncertain terms that you're not welcome.

Time and again we see claims of diversity (I'm looking at you Myer) that don't include disability (or various ages, body types etc). Whilst organisations such as Starting with Julius are making great strides when it comes to including disabled children in advertising, adult representation is still far from common. The same companies that are using disabled children in advertising aren't transferring that same diversity to their adult range. And diversity in general rarely includes disabled models. Or if it does that representation is so rare as to be heralded as suddenly representing a more accepting and inclusive fashion industry. The same fashion industry that still fails, with some exceptions, to even acknowledge that disabled people can and do enjoy fashion.

Media in general still falls into three camps when reporting disability. We are either inspirational , worthy of pity, or as is now more often politically expedient, "bludgers" or "leaners". The media continually reinforce a negative portrayal of disability though their language (eg they continue to fall back to the use of terms such as "wheelchair-bound" or "sufferer" despite clear guidelines on disability reporting being readily accessible). Not only do the wider community come to believe these categories, but as this piece by Carrie Wade examines, disabled people as members of that same community, end up internalising ideas of Good Disabled and Bad Disabled. Or really it is Good Enough. We get a pass at a certain level. Not enough to be worthy of a Vogue shoot mind you. Don't start thinking you're good enough for that little disabled person. Good Enough that we approve of your existence, but know that you can easily become Bad Disabled at any time if you don't toe the party line.

It is the combination of these beliefs and actions that lead to increased levels of violence against the disabled.

We are less than.

Not even worthy of being in a photo shoot when at the pinnacle of sporting prowess, in an advertisement promoting and celebrating the pinnacle disabled sporting event. (The sarcastic part of me wants to know if Kylie Jenner was a consultant on the concept.)

Is it any surprise that more and more disabled people are turning to social media to share their lives in writing and through selfies on platforms such as Instagram and Tumblr. We are continuously erased from the current social zeitgeist by active exclusion or pity/inspiration tripe reporting. While the Brazilian Vogue issue is a glaring example it is both a product and extra fodder for the exclusion and othering or disabled people. Be it the recent massacre in Japan where the victims remain nameless numbers with the thin veneer of cultural norms used as an excuse for this erasure, or the disturbingly high rate of violence against disabled people, in particular disabled women, around the world including here in Australia, all derive from the same base level of negative beliefs surrounding disability and the people who are part of that community.

"Other statistics indicate that 90% of women with intellectual disabilities have been sexually abused. 68% of women with an intellectual disability will be subjected to sexual abuse before they reach 18 (Frohmader, 2002)".  (‘Double the Odds’ – Domestic Violence and Women with Disabilities: Written by Sue Salthouse and Carolyn Frohmader. This paper was presented to the ‘Home Truths’ Conference, Sheraton Towers, Southgate, Melbourne 15 -17 September 2004. Copyright 2004.)

It is estimated that 1 in 5 people are disabled. Yet we continue on the fringe, an unpalatable reminder of the fallibility of the human body and life in general. Disability is seen as a horror to be avoided and those who live it are seen as living horrible worthless lives. How on earth could someone be disabled AND happy? We are seem as villains in movies, welfare bludgers by the politicians, poor things (stop patting me, people!) or inspirational heroes for getting out of bed or buying milk. And when we raise our voice to call out ableism we are whingy. The people we hold to account for poor behaviour or attitude assume the role of victim. We are told to be quiet. People have good intentions. They know better. And they are shocked and angry that we have the audacity to say we might actually be able to articulate the nuances of life as a disabled person better than them.

"Pires [an abassador for the Rio Paralympics and one of the models] defended the photos on Instagram saying, ‘As ambassador, we lend our images to give visibility [to a cause], and that’s what we are doing, my God.’" 

AKA Damn you ungrateful disabled people how dare you tell me I'm wrong!

Brazilian Vogue and the actors/models involved can side step all they like. For the rest of us we can see it for the BS it is. And we're over being quiet.

Michelle

Wheelchairs, Walking sticks, and Wall-walking.

[Image: 8 photos of a green-haired woman varying between sitting, standing, using a walking stick or a wheelchair. Photos also include her awesome merle Great Dane and constant furry companion, Freyja. The woman is smiling and happy and frocked up in each picture.]

My mobility varies.

Day-to-day.

Sometimes hour-to-hour.

Some days I can stand unaided.

I can walk around my house, furniture and wall-walking. Using my strategically placed chairs. Or Freyja makes a handy Great Dane sized stabiliser by my side.

Some days I need my walking stick. It allows me to cover short distances. To get in and out of the car. Out in the backyard or out to the mail box. I like to use my legs when I can but some days even the best Can Do attitude wont make the muscles work.

So

Some days I need my wheelchair, especially if there's distance to be covered, my legs are particularly weak, the pain is too much, my blood pressure is playing up or the exhaustion overwhelming.

Some days I'll use my wheelchair to go out, say to a cafe, AND will then use my walking stick to traverse a short distance to a non accessible loo. Often further exhausting myself in the process.

Some days I'll use my wheelchair but manage to take an unaided step in and out of the car.

Some days I'll mix it up as my body decides to be finicky or I push my piddly boundaries.

Hell, some days I can't get out of bed or crawl to the loo.

And while I'm at it, 99% of the time I'll frock up because I enjoy it. Because disabled people can enjoy can enjoy fashion. And we can dress however we like and don't have to conform to a narrow and false idea of how we should look or act.

It seems to not only confuse but anger many people when they see people standing from a wheelchair or alternating the mobility devices they use. But it's really not that hard. Not everyone in a wheelchair is paralysed or uses it 100% of the time. They are a mobility aid for a whole host of disorders.

Mobility can vary for many people. We use the best tool for the task on the day.

My wheelchair allows me to leave my house and gives me independence and freedom that I would otherwise be denied.

My walking stick allows me to make my way to my car in the driveway or pick grab the eggs from my chook house.

My legs let me do, well not a lot these days, but when they decide to get their shit together for a little while I make the most of it.

Disability is diverse.

Open your eyes and your mind.

Michelle

Today's musical accompaniment is dedicated to a now blocked individual on Instagram. If you see someone using multiple aides, or standing from their wheelchair, don't show yourself to be an uneducated, small-minded, judgemental arsehole. It's not really flattering for you and has to be an exhausting way to go through life.

Sing it Babs! 

Seven

The coffee machine squeals. Like Pavlov’s dog a strong desire for another cup of black liquid ripples through my body and I weigh up the hour and the likelihood I’ll be up all night. Not to mention the likely need to pee in the communal loo out the back of the shop. Always a pot luck adventure. Will it be bearable? Or more likely, will it resemble a scene out of a Tarantino film. Not to mention that accessible loos are rare as hens teeth. I can see the rising cloud of steam in my mind’s eye and caffeine sings it’s siren song. I throw caution to the wind and suck up my petulant bladder issues, embrace my doom and order another. To my right the sweet smell of citrus tart rises. All is well with the world. 

I’m the only customer seated at long line of otherwise empty, square, faux-marble tables. We’ve lived in this town for two and half years now and only really discovered this local bakery a few months ago. Drawn by a sudden inexplicable need for a classic meat pie which sent us in search of a proper country bakery. And here I am all these months later hoping that a change of scenery, a long black and a baked treat can prompt some coherent words out of my sluggish brain. My blog is seven years old today and I refuse to not at least attempt a post to commemorate its birth.

It’s been a rocky road this year and words haven’t come easily. But I’m on the upswing (I type before frantically reaching for the closest piece of wood). An upswing that is becoming more apparent as the days creep by. I’m getting better at pacing. At self care. At time. All things that were never my strong points long before illness and disability came calling. I still beat myself up about my failures and inefficiencies. I still lie awake trying to recall the important things that I know I have forgotten. I am still my worst enemy in many ways. But seven years since I first began tapping away on a keyboard, transferring the circumlocutions and tangential thoughts that raced thorough my mind into glyphs on a screen, most of which resembled those things called sentences and paragraphs, I am still here taping away. Hoping that the process of transference will somehow clarify my sense of self and work through the emotions that come along with a life of illness.

Next month is ten years since I first ended up in the Emergency Department at work. A decade working through not only the physical, but the emotional, social and psychological aspects of health are not really one I want to commemorate. But three years from that day I managed to pump out my first post. It wasn’t much just a basic, This is Dysautonomia, post. Pretty bland and not one that warms the cockles of my heart with sentimental pride. My next post was in truth my first. One that I had worked on encouraged by my counselor in the months proceeding my decision to blog. It was a great purging. Not my best writing but it was raw and honest and my heart burst all over the page desperate to remove the burden of those proceeding three years. To be able to breath again. Even for a moment. It was a sweet release. Until I shared those words on the public domain, they’d remained my secret. They remained my silence and my shame. Then I set them free. I stood naked in the middle of a crowded room and waited for the ridicule I told myself was a certainty. Instead I found a community of people who understood. The silence and shame so many felt was theirs alone, was shared. Baring my truth was empowering and addictive.

I can look back at my words and track the ups and downs of the last seven years. Life is catalogued.  All seeming more vital given how poor my memory these days. I look back and see the times I found the laughter and the times when it was all too much. I see all the stages of grief played out time and again. Acceptance raises it’s head more frequently these days than in the beginning. Though even it is beaten into submission by anger and fear, denial and much pouting with annoying regularity. It’s all there warts and all. The truth of my experience. I look back and see where I emerged from hospital under 50kgs and looking more wraith than human being. I see the sunken eyes and read my own words talking about fear for the future. Fear for the unknown that was taking over my body. Trying to balance living with uncertainty and an unbearable shadow dominating each and every day. Life became complex and I like to think I negotiated it well for the most part, but at times it’s been a complete balls up. I have failed in being the perfect patient, through self-sabotage (denial is a wonderful thing) and through the regular frailties of simply being human.

I want to say I know the secrets. That I can lay out the seven secrets to living well with illness, one spiffy item for each year of blogging. But the truth is I don’t think there is a set list. There are some big overarching ideas, but for the most part we all wing it. We aren’t a homogenous group to which you can apply a nice neat list. I listened to a podcast on Frame of Reference today and it reminded me of that individuality. We all come from different backgrounds and carry the baggage of our unique pasts. Even growing up with two siblings I know my recollections of our youth are very different. We interpreted and processed the events of our lives with an eight year gap in brain development and unique personalities and interactions with friends and family. All three of us have fiery tempers and are independent to fault, but beyond that our lives are incredibly different and the sum of our life experiences over the past 43 and 51 years respectively, have made us who we are today.

And so it is with illness. I see it even in the forums where two patients will see the same doctor, receive the same information but walk out feeling that they have had very different interactions. We walk into every encounter in the medical system with a set frame of reference that helps to determine our path from that time. We walk in carrying ideas about illness and disabiltiy, self-identity, and religion. We walk in with differing social and familial support, balanced against the social and familial responsibilities we all bare. Introvert or extrovert. In light of that it can be hard to say what the tricks are to making it through the world of chronic illness and living a full and happy life.

I do know that we can do it. I see the resilience in the friends I have made over the last seven years. I see it in my own words on this blog. I need to read them more often. To remind myself of where I’ve been and where I’m going. This life of mine hasn’t turned out as I once expected, but it is a good life none the less. I read a great piece somewhere, at some point in time, my befuddled memory wont tell me where, that life is flux. It is change. And that is what the last seven years of blogging and ten years of illness have taught me. (Well held me down and screamed in my face with relentless regularity may be more accurate.) The flux and change are natural even if they haven’t always felt that way. My life isn’t like other lives, but then again neither is anyone else’s. We all tread our own paths, even all those other 43-year-old, Australian women with green hair living with Dysautonomia. We share snippets of each others lives, but our unique parts are what determine our life experience and outlook. And equally what make us fabulous.

I can say there have been bonuses along the way. Friends I’ve made and strength I’ve found. There is a whole community of amazing people out there in the ether that I would never have been lucky enough to meet if I’d never become ill. My outlook on life that was really in it’s infancy back in 2006 has been honed and refined. Blogging has become an act of defiance. Breaking free of the lessons of my youth that said that illness was shameful and weak and that you should never speak up and share. The importance, and more than that, the power of one’s voice is one thing I have come to embrace. There are still those who don’t understand why I choose to share. There are those who mock social media. But for myself and others like me, embracing social media has become empowering. We don’t have to wait on the gatekeepers to allow us to speak. We don’t have to ask permission or sanitize our lives to be palatable to the powers that be. The power of our voices can lead to conflict as existing power structures are challenged. Not just in direct means through activism and advocacy, but by means of their growing irrelevance in an age where we side-step them entirely. We create our own communities. We share our stories and no longer wait for someone else to tell us about our experience. In the time it takes a monolithic media outlet to write an op ed on the passing fad of social media, our voices have been heard all over the world a thousand times over and we grow in strength.

Illness has been freeing. I have learnt more about myself over the last 10 years than I have in any other period of life. I care less for the opinions of others, be it what a woman over a certain age should wear, or how I should react to illness. If I listened to the words of those who talk about approaching illness in a dignified manner, I’d never have written a word. And I’d be the poorer for it. Such opinions seek to silence us least we make them uncomfortable. Because having to hear the reality of our experience is so challenging. Illness is messy. But in hiding the truth we do a disservice to all those who find themselves thrown into the new world of broken and decaying bodies. Illness is hard. I have cried myself to sleep more times than I can count. I’ve had to give myself enemas and puked and passed out in foul public toilets. But I have also had a life of joy and love. I am disabled and I’m happy. I live my life and embrace my weirdness. These are the stories that need to be shared. Not the dichotomized sanitized inspirational meme version of illness and disability, nor the pity worthy, “I’d rather be dead than live like that”, alternative. Life is a roller coaster of good, bad, and mind numbingly boring ordinary. It’s pretty damn beautiful when you look at it.

So I sit here seven years on, 43, bright emerald hair, haphazard clothing choices in my wheelchair tapping away at a keyboard in front of a fuscia wall in a small bakery in country Australia, realizing that life isn’t that bad and no matter what I’ll be okay. And so will you, dear reader. No matter what life or illness throws at you, you’ll be okay.

“Those first days and months are hard and scary and lonely. But you'll make it through. You think you wont. You'll want to throw in the towel and scream "No more!", but you'll make it out the otherside. And you'll do it again and again. I can't predict how your symptoms will pan out overtime. We are all very individual. Some will get better, some will have symptoms that wax and wane, some will have a chronic but stable process and some, like myself, will progress. Your body may still be broken, but your ability to deal with it, will get better.  You will find your stride. You will find the things and people in your life that matter and make you happy.  You'll be able to breathe,even when it's bad. It wont be easy but you'll find that your ability to cope and your acceptance will grow. Your spirit will heal and you'll find direction you never imagined. You are filled with possibilities and, if you give yourself permission, you'll find them.Being ill can give you a freedom to explore yourself in ways you never thought possible. Life with Dysautonomia or any chronic illness, is a life changed, but sometimes that change is a wonderful thing....

.... Just know, it gets better. Not in the Disneyesque sense of shooting stars and rainbow-farting unicorns. But in the real world sense  where you're battered and bruised but you're stronger than you thought and more at ease with your life. It takes time, and there will be tears and disappointment and setbacks.But one day you'll turn around and realise that somehow you made it through, and no matter what your body is or isn't doing, you're okay.”
                 
(I realised all this back in 2012, but sometimes I need to remind myself of own words)

That is what seven years of processing my life, my thoughts and emotions, though this blog have given me. So I’ll keep tapping away. Purging my brain. Quality and quantity waxing and waning, breathing in time to the pulse of my body and life. 

Thank you to all who keep reading. You are the rockstars. And your support, encouragement and friendship are what make every hard wraught letter worth it.

Michelle

We float

Take life as it comes

We float

Take life as it comes

(We Float, PJ Harvey)

 

Fashionable Compression Stockings 2016 Update: Options and New Tips.

[Image: I stand in my chicken run wearing a short black dress, red cardigan and fabulous hot pink tie-dye compression stockings from the Juzo Soft range. Freyja, my Great Dane, peaks through the fence longingly while she holds her Rhode Island Red chook, Jolene. It's a beautiful sunny day.]

This is not a sponsored post  just my personal research after hours spent procrastinating looking for pretty compression stockings.

My Instagram is full of fashionable compression stockings and ways I style them.

In this post I'll only be discussing compression stockings (full pantyhose and thigh high). Compression stockings, in particular waist high 30mmHg+ are the most commonly recommended lower limb compression garment recommended for Dysautonomia patients. Some patients do find below knee compression socks provide them with therapeutic compression. However, for many patients such as myself there is a need for higher length graduated compression, especially if venous return is particularly poor (I end up with a painful compressed calf and large all round verandah of fluid-filled flesh hanging over the top like a bizarre pasty leg-shaped mushroom. Bringing sexy back, yeah!) Additionally, medical grade compression socks come in a plethora of awesome patterns and colours (check out brands such as Rejuvahealth, or even just search on Amazon or Zulily for options, or a quality sportswear company such as 2XU) so fashion options are more readily available. For those of us needing thigh high or full-length pantyhose fashion can be far harder to come by.



As I've written previously I tend to wear thigh high compression as I can no longer stand stomach compression. The fashionable options available in thigh high and waist high medical grade compression have remained limited compared to compression socks and even arm sleeves and gauntlets (check out Juzo and LympheDiva). Although there have been in improvements over the years.

When I first began looking at compression stockings back in 2007/2008 I was confronted with a catalogue at my local pharmacy which gave me the options of beige/nude, white, navy blue and black. As I was to find 'Opaque' and 'Sheer' were terms thrown on the page with wild abandon and didn't match my experience with regular fashion hosiery. Equally 'fashionable' was used to represent that the band on a pair of thigh highs had some dodgy scratchy 'lace' rather than plain black. Thankfully times have changed and fashion and compression stockings can actually coexist and thrive.

Brands such as Rejuvahealth, Juzo, Jobst, Sigvaris, Mediven, Therafirm and Bauerfeind (VenoTrain) offer a range of fashion colours and in some cases patterns, both coloured and sheer. Colours and patterns vary by season and it is worth signing up to brand newsletters, or social media accounts from some of the major compression stocking distributors such as BrightLife Direct and CompressionStockings.com to make sure you don't miss out.

Brands such as Juzo offer their colours in both an opaque and sheer option. It's important to note that Juzo colours can differ between country eg German and US colours are different and it can be worth checking out the different options to find a shade that suits your fashion needs. Therafirm even offers a Preggers line with a variety of colour options specifically for pregnancy.

Two options I hadn't come across until this year are the Bauerfeind VenoTrain Stylist (German) and the Tramps Hoisery.

Bauerfeind offer a customised option in VenoTrain Stylist, though I am yet to work out how to access that from Australia (still waiting on a reply to my email). The picture below gives you an idea of the options available, and a picture of what the end product will look like. I love the idea that we can customise compressionwear beyond height or colour. Given that for many of us compression stockings are an everyday item and will be for the foreseeable future, the idea of being able to personalise is very appealing. I'll keep you posted.

There are other brands offering fashionable compression eg Tramps (picture below) offer a 25-30mmHg waist high in Bryanna Cheetah Jacquard with thong toe in Grey and Natural (which are a similar pattern to ones offered by Rejuvahealth a few years back), but you do have to search. 

(Source)

Mediven also offer a Swarovski embellished version of their stockings in the Mediven Designs range, though they can be hard to source (the UK arm of the company offer 3 designs whilst the French arm offers 6) and I suggest contacting the company directly to see if they are sold in your particular country. Crystal embellished compression stockings have come up over the years but sourcing them has always been problematic, plus they are fairly pricey. But for a special event they'd be fantastic.

 (So cute, source)

 (UK designs)

That pesky thing called 'cost'.

Quality compressionwear is a significant financial investment. The more unique the item the more the cost. Items manufactured to specific individual measurements can be incredibly expensive. The financial burden of compressionwear continues to be a major factor for patients as not all insurance companies or government suppliers will pay for compression wear, or will only provide the most basic of styles. But there are a number of ways to cut costs.

Sign up and First purchase discounts: A number of sites will offer buyers a discount on their first purchase. These discounts can range from 15-20% which can be a considerable benefit on a tight budget.

Coupons: There are a wide range of coupon sites offering discounts for various compressionwear websites and specific brands. Simply Google coupons and the brand or company you prefer and see what comes up. Most coupons are time limited so if you find a good one get on it pronto!

Sales: Most websites will have a sale section These can provide you with considerable savings (50-70% in some cases). For example at the time of writing, Rejuvahealth have some lower strength, 15-20mmHg, patterned pantyhose down to $30US score! Get on that people. End of season colours often come up in the sales a month or two after the change over. You sometimes have to put in the hard yards and search but if you have a colour or style you like for the last season pop it in Google and see who has any left. It can be pot luck as to sizes, styles and lengths available but I've scored some bargains over the years. If you're after a pair of stockings to wear under jeans or long skirts the world's your oyster with well known sites like Zulily having reputable brands at bargain basement prices.

Shop around for postage: Postage is the nemesis of anyone living in the Southern Hemisphere. Current rates can be highly prohibitive even if the stockings themselves are a bargain. Sometimes it is worth contacting a company to see if they will take pity on us poor folk down under and be willing to wave their postage or at the least provide a discount.

Shop local: Related to the postage issue is the currency exchange rate. Our piddly little AU$ is doing it tough when ordering from OS. However, sometimes local distributors can provide a cheaper option. For example here in Australia The Appliance and Limb Centre can source Juzo Softs from both Germany and the US at a much cheaper rate than using OS suppliers at present. Always keep an eye on exchange rates. Given the uncertainty of world events such as the recent Brexit, exchange rates can change rapidly. 

You get what you pay for: There are many companies selling compression stockings for next to nothing. I saw some fabulous Beetlejuice-style black and white ones out of China for $10US be still my heart! But alas, when I contacted the company it became clear that we differed on the definition of 'compression'. With cheaper versions it is often hard to find out the exact compression rate and if the compression is graduated. Many companies wont respond or respond with automated emails with little to no detail.

Whilst compression stockings can be fashionable they are first and foremost a medical device and like any medical device you shouldn't scrimp on quality. If the compression is poorly designed it may not perform properly and can lead to problems in how fluids are returned. Remember we are buying these stockings to help with a medical problem. It is better to save up and buy one good quality pair of stockings from a reputable brand, than to have five cheap, but dodgy, pairs.

Sizing.

Brightlife Direct now have a size/brand calculator the Brightlife Direct Size Calculator which I tried out the other day. It's a great option if you are just starting out looking at compression stockings and are feeling overwhelmed at what to buy. You simply put in your measurements and style you're after and it pumps out a list of brands that may suit. To give you an idea of how it works I popped in my measurements and usual length and compression. As you can see below it suggested a number of products that may work for me. I would always recommend double checking a brands individual sizing to be sure, simply because it can be such an expensive outlay, but this is a great starting point.

For more on compression wear 

check out:

Compressions Stockings from Beige to Brilliant Guide. My basic guide to selecting and buying compressionwear. I wrote this way back in 2012 and it's still one of my most popular posts.


Below are a few reviews for different brands I have purchased over the years and a bit of a tongue in cheek post about how I style my compression stockings.

Rejuvahealth Review.

Allegro, Microfibre 20-30mmHg Black Thigh High Compression Stocking Review

LympheDiva Gauntlet Review.

Fashion blogging is not for the faint of heart

Michelle

Bringing sexy back. Sing it JT.

Windows

[Image: A woman, me, sits before a mirror with her merle Great Dane, and constant companion, Freyja. She's wearing grey and blue pjs and the picture is muted and dark. Her pale and tired reflection looks back, The mirror, like most of the house has Great Dane slobber all over.]


I can hear the television from the other room. The rhythm of the speech declares it sport in some form, though the content of the comments is lost in a melange of muffled sound. The world continues on oblivious to my presence on this side of the white MDF door. That this cheap and poorly fitted paper thin block could cut me off, rubs. Not that I can remedy the situation.

I lie supine, bound with invisible straps. Words fail as mind and mouth refuse to communicate. What simple ideas and words coalesce in my brain, unable to reach their destination. I am reduced to the most basic of function.

I don’t know where I am now. I try and pull myself together but the exhaustion foils my attempts. There are points where the unrelenting nature of illness catches up. Knocks you down and cages.

I’m coming out the otherside but the pull of the cage is strong. I worry that I’ll lose my footing and slip back. My windows of semi-functioning are small. Some days so small that simply trying to work out how to access the series I want to watch while lying on the couch is beyond me. Some days I get there. The programs indexed but I can’t recall what it was I wanted to watch. I end up overwhelmed by choice, too much data for my mind to process. So I close it down and watch the midday trash TV on whatever channel happens to be on.

The last three months are vague. Someone snuck into my brain and ran their thumb pad over the ink before it dried. A large smeared mess left in its place. I can’t recall what I’ve forgotten but I know I’ve forgotten things. Important things and small things. That knowledge I have, but the specifics. What was it I was supposed to do? Who was I supposed to call or email? Did I make promises to do things. Most certainly. I do that all the time. But what was it I promised to do? And for who? My brain is a mess. My cognition slowed and frequently disorganised. Trying to carry through a thought to completion beyond me more days than not. I feel like I should apologize, but to who? About what? I’m not sure but the feeling is there, pressing hard as I lie in bed at night. Reminding me that I’m messing up. But how do you remedy a situation that you no longer recall?

I have ideas. But they are gone as soon as they start to become clear. I can see them for a split second. And then…nothing. Just a vague impression that lets me know I did indeed have a thought, a plan, a something. Just enough to tantalize and frustrate. I was sharp once. I know that. But my confidence has taken a battering of late. The chunks of time, of events, of conversations that are missing add to my anxiety. I am an unsure about things that would never bother me before. Simple things and big. Am I saying the right thing? Doing the right thing? I feel stalled by a brain that has gone on strike.

So I have avoided my lap top. My emails continue to pile. I still find it hard to read and hard to respond. I’ve lost track between one paragraph and the next. But a paragraph is better than it was. It’s getting better but it’s excruciatingly slow. Nails on a chalkboard seemingly drawn out for an eternity.

It’s getting better.
It’s getting better.
It’s getting better.
If I say it enough it’ll become truth.

I’m trying to be kind to myself. I’m trying to embrace the tiny windows. To live larger by living smaller. Simple, short and sharp. Focus on the joy part and embrace every second of it.

I sit with my chickens and play with my dog. I get dressed and I take silly photos. I’ve started back on Facebook, but I’m limiting my time. I bug my husband to go to the local lake and roll around through the park lands. I have the odd coffee out and just try and breathe.

I’ve started back with small exercises. I made pizza and sweet scrolls. I potted a plant. I rolled to the cow paddocks on an icy day and watched the pelicans and water foul swim on the dam. I stood at a council meeting and spoke my mind. A small glimpse of the old me. Exhausting and exhilarating. I wrote this blog post over weeks. A snippet here and a snippet there. But I wrote it.

Life is smaller, but the parts are more healing. I am resigned to patience. I will wait. My brain will come back. I will step back into my life.

I’m on extended sick leave.

For now. But not forever.

Michelle

[Image: A woman sits cuddling a large orange chicken on a cold and dull Winter's day. She's pretending to give the chicken a kiss. The chicken, Sharona, is plotting the woman's death.]

*Thanks to Stefani, from Kind of broken: Lifestyles of the Young, Sick and Fabulous, whose own efforts prompted me to try and get this post into something resembling coherence. We're both going to get there. Of that I am sure.



Not sure why this didn't come up on the post. But hey. Matters little in the big scheme of things. But I've been listening to a lot of The Jezebels in my down time. I love this song, but there's something about the film clip in particular that I really love and feels invigorating.

MIA

[Image: a woman kneels on brown carpet, forehead touching the ground in the yoga pose known as Child's Pose or Balasana which helps her gastric pain. Light shines from the window behind her, reaching a chair covered in a bright red throw rug.]



Eight minutes and six seconds. That's when my exhausted body said hell no. I lay on my yoga mat listening to Adriene, from Yoga with Adriene instructing me to massage my feet. A panting blob lying on green rubber matting not even capable of a proper savasana. Autumn sun was a lovely idea. The birds were chirping, the chooks scratching away in their yard. Even the workmen that have been at my neighbours for weeks were silent. Freyja came over and nuzzled my pasty face before deciding to take a poo less than a metre from my head.

And in that moment, the last couple of months were summed up neatly. Short lived joy followed by a large foetid mustard-coloured dog nard from which your slow and exhausted body struggles to escape.

I'm not quite sure what happened. The usual illness malarky was muddling along, when suddenly it all went pear-shaped eventually ending in a long overdue ED visit and a protracted recovery phase that still feels in its infancy.

I've tried repeatedly to take a deep breath and step out into the world only to be hit hard with payback. I've dressed up and gone to a cafe only to be forced to watch Mr Grumpy eat while I swallowed down vomit and ate antiemetics. Sit out with my chooks and recovery sleep is measured in hours. Yesterday I went out for 20 minutes, saw some cows in the paddocks next to our housing estate and today I woke up struggling to breathe or lift my head from the pillow.

Dip my toe in the world. Tell myself I can push through. And my saggy, stretch-marked, arse is where I keep on landing. Payback comes in metric fuck tonnes these days. And it can no longer be ignored. My droll husband tells me at least I look sick now, but even he finding little in that line amusing.

I have a collection of vintage cutlery. In amongst it all I have several tiny silver, salt and mustard spoons. Smaller than my little finger. My spoons have been in short supply of late and those I do have are reminiscent of those tiny salt and mustard spoons. So I've hermited. Built myself a pillow fort and tried to simply ride it out. When existing is hard the rest of the world has to be put aside to focus on trying to heal. And of late it's been pretty bloody hard.

I've tried to put pen to paper or fingers to keyboard and realised there was nothing. My brain too flummoxed to conjure up a coherent thought let alone hold that thought, coordinate fingers and get it onto a screen or piece of A4. Reading has equally been beyond me. And I have been bereft. Two of my greatest pleasures gone and my world far more claustrophobic.

I have known that I have cognitive issues for some time, more than just regular old brainfog. I had a brainSPECT scan last year that confirmed moderate impairment in the blood flow to my left temporal lobe, and mild to my right. I haven't fully processed what it all means, but it's effects are clear at present. My reserves are piss poor and now documented in a series of rainbow coloured scans. Add in worsening health and it would seem those reserves have been wiped out.

To respond to emails or messages is difficult in the extreme. Primarily because even reading them is exhausting. It's a weird place to be. That which was once my strength is muted. I have to believe it'll come back when this patch has passed. Losing my words isn't an option I want to contemplate.

This is the most I have written in over two months. It's been a struggle. But it's better than the usual staring at the screen, perplexed and frustrated, impotent hands poised over the keyboard, that has marked the last couple of months. So I'm taking it as a cautious sign.

The pain in my arms and wrists and the exhaustion that have come from these few words are worth it just to see them sitting there before me. They aren't perfect. But they exist. A small piece of me out there in the world again.

Michelle

I wanted to say thank you to everyone who has sent emails and messages of support and concern. I haven't been able to respond and sometimes even read bar the first line or two, but those messages are much appreciated. I'm not really on social media at the moment except for a bit of Instagram where deep cogitations are not really required. I'm not sure when I'll get back on properly. I need to be ruthless in my energy usage to try and get on top of this again.

"Come on my friend

Drink to good times

Golden wishes

To your health and mine."

(PJ Harvey, You Come Through. 2004)