Belinda Taylor: Would you Rather…?

This ‘Meet My Peeps’ post comes from one of my favourite writers, Belinda Taylor.  A former ICU Nurse, and general Science boffin, mother of Milly the Cat and Monty the budgie, and wife of Chris; Belinda has completed a Diploma of Accounting in the time since her diagnoses.  She has post viral POTS complicated by Myalgic Encephalitis. I don’t think she’s been formerly diagnosed with a wicked sense of humour, but she’s got one.   You may recognise her style from the excellent spoof report she wrote for this blog recently, ‘Breaking News’ all about a cure for chronic illnesses.   And if you are working on one of those 8 Great Ways to Live Well, and need something funny in your day, look no further than Bel’s two pieces.  She makes me smile this girl!

Photo of Belinda Taylor and the quote: "Having a chronic illness of any sort is like a life changing game of 'Would you Rather?'"

Some friends and I used to play a game called “Would You Rather?” at work. Being nurses, it was always pretty easy to find something appalling and stomach-churning to test where your limits of tolerance were. Poo in the eye was always a favourite.
“Would you rather… poo in the eye? Or, to eat a teaspoon of sputum?” See? We were pretty gross.

Having a chronic illness of any sort is like a life changing game of Would You Rather? Would you rather, have your mind deteriorate and a healthy body? Or, have a functioning mind and have your body crap out on you? I’m not sure the first option would be a whole lot of fun, unless your deteriorating mind made you hallucinate all day that you were being fed chocolate macarons by Jamie Fraser from Outlander, while lying in a bubble bath.

Having POTS and ME, I can 100% say that the second option isn’t a bundle of laughs either. I would much prefer poo in the eye. Having your mind say “Yes!” while your body says “Hell, NO!” is a lesson in frustration that is played out in the interaction of your body and mind every day. If my mind and body were once friends, they would have broken up by now and only spoken on birthdays and the occasional ‘like’ on Facebook.

A typical day might go something like this:

Scene: Our heroine is lying in bed in the morning, having just woken up.

MIND: Ugh, I really need to go to the loo!*

BODY: Ha! You know I’m going to make you face plant if you try and get up before you’re well hydrated and have taken your meds

MIND: -but if I drink more, I’ll need to go to the toilet even more!

BODY: Well, ok, if you want to risk it…..

MIND: Fine, you win. I’ll drink this bottle but I’m not waiting for the meds to kick in.

BODY: OK, I can live with that.

erm, what would I know_!(2)

Our heroine commences a wobbly walk down the hall to the bathroom for sweet, sweet, bladder relief.

MIND: I suppose now we’re up, you want to be fed?

BODY: Well, I’m not too fussed. I’d be willing to let you do something else first. Feed the cat maybe, put some washing on.

MIND: Wow, ok, thanks. I’ll get onto that then.

1 minute and 43 seconds later…..

BODY: FEED ME NOW!!!!  Stop what you’re doing immediately and feed me! I’m nauseous, I’m dizzy, I must be fed right now or I really think I might die!

MIND: But you just said-

BODY: –I know, but now I really have decided that feeding me would be the best thing.
I’m getting hanGRY**!

MIND: Well, ok, if you’re going to be like that about it, here, have some breakfast.

BODY: Ahhh, thank you. I love you.
Thank you for feeding me and looking after me with this delicious food. You really are the best.

MIND: You’re welcome-

BODY: -Gah!! What is this?? Now I have food in my belly, I have to do work to digest it?? Seriously? Well you know what this means, don’t you? I’m going to have to steal all the blood and give it to the stomach. Sorry brain, you miss out this time. And heart? Yeah, you’re going to have to work really hard to get the pitiful amount of blood I’ve left you up to the brain. Sorry about that, but I really have my work cut out for me here with all this digesting.

1 hour later

MIND: Do you think it would be ok if we moved now? Maybe we could try a bit of exercise?

BODY: Oooh, exercise, yes that sounds like fun. What shall we do?

MIND: Maybe we could just walk down to the corner and back again.

BODY: Yeah! Let’s go. This sounds amazing. Woo Hoo! Exercise here I come.

Our heroine makes it to the first corner down the street.

BODY: I’m feeling awesome. Can we go further? I’m loving this! I feel so freeeeeee. Let’s go to the next corner. The next corner really would make my life complete, you know.

MIND: Are you sure? You always say you’re quite tired after exercise. I don’t want you to overdo things. I’m trying to look after you. But the next corner would be pretty amazing…

BODY: Yes! Let’s do it. This is… easy.

Our heroine walks to the next corner.

BODY: Um, yeah, sorry about this, but I don’t feel so good. I think the next corner might have been a bad idea.

MIND: But, you said you felt great, you were keen to go.

BODY: What would I know?!

MIND: Well, quite.

Our heroine inches her way back home, to spend the next few hours (days/weeks) cursing her stupid body for being a bit of a tool***.

What would you rather, poo in the eye? Or chronic illness?

 

NB:  Translations below for non-Australians/New Zealanders…
* loo = toilet
** hangry = hungry +angry
*** being a bit of a tool = being a bit of a dick

 

 

Sarah Phelps: Through a Child’s Eyes

Meet my Peeps Guest Series: I met Sarah some time last year.  When I first met her, I had no idea what a great writer she was.  She was often present in online conversations and I remember wondering how she managed the caregiving role for her unwell husband at the same time as dealing with her own illness. Aside from her illnesses, Sarah is a  talented musician and bright spark.  I didn’t know she was a writer until she responded to my Letter to Dysautonomia post. We began corresponding and she got hooked by the writing bug!  This is the first of Sarah’s guest posts.
How do you see yourself?  Sarah is looking at herself through the eyes of others…

 

Picture of Sarah Phelps with a quote "When people look at me they see a helathy twenty-five hyear old girl riding around on the footpath on a mobility scooter meant for old ppeople.  They don't know the truth.

I broke my ankle in early 2009. I wish I could say it was from something exciting, like a jet skiing accident. But I was just walking around my room, tidying up. I sat on my bed to grab something from the other side; it only took a few seconds. When I stood up, one of my legs was completely numb. I didn’t realise until I had taken a step, placing all my weight on it, and there was a sickening snap, my ankle twisting at an unnatural angle as my leg crumpled.

Because of my EDS* getting around on crutches was very difficult. Trying to move my bodyweight around using just my arms = dislocated shoulders. My broken ankle and torn ligaments also meant I couldn’t drive, so I was stuck at home. A sympathetic couple from my Church stepped in and gave me a second hand mobility scooter. It had belonged to their elderly mother, but she’d just moved into a nursing home, and so no longer needed it. It was all mine. It was a bit embarrassing, but kind of cool to ride him around.

He was red, my favourite colour. I named him Wally.

It was pretty easy for people to see why I was riding Wally. I had a big cast on one leg, and a pair of crutches tucked under one arm. I got lots of grins and thumbs up. “What a clever idea,” people would say. “That’s heaps better than trying to get around on crutches!”

Eventually, my ankle healed. I could drive again. Wally got tucked away in the shed. Everything was back to normal. But slowly, my health continued to deteriorate. Eventually, I had to surrender my license. I wasn’t well enough to drive anymore. We sold my car. And I was stuck at home again.

After a while, Wally came out of the shed. I started using him to drive around the block, taking the dog out for a run to stretch her legs. Later I began driving him to my parents’ place, to visit them. Eventually, I progressed to taking him grocery shopping. I’d park him outside the store (he’s not an indoor model – he’s quite wide), do my shopping, then load him up with groceries and ride home. I got quite good at packing: I could fit a whole trolley-load of groceries on there! I was so proud that I could do the shopping by myself, instead of having to drag my husband down to chauffeur.

But I noticed something different. I didn’t have a big cast on my leg anymore, or a pair of crutches tucked under my arm. People no longer smiled at me. They frowned. Even if I made eye contact with them, gave them a friendly smile and cheerily said “good morning”, they didn’t smile back. They muttered under their breath. They made rude remarks about my weight. They pointed and laughed, and mocked me.

And I felt ashamed. I was no less disabled than when I had a broken ankle. In fact, I was more disabled, as it wasn’t just my ankle that was broken; it was my whole body. But my disability was invisible, is still invisible now. When people look at me, they see a healthy 25-year-old girl riding around on the footpath on a mobility scooter meant for old people. They don’t know the truth.

At first, it would really hurt when people made fun of me, or made rude remarks while I was down the street. But my two younger sisters changed my attitude. They were 9 & 11 years old. They loved to sit on the floor of the scooter and ride around with me, their legs resting on the plastic wheel arches. My youngest sister actually thought that this was what the wheel arches were designed for, so that Grandmothers could drive around with their grandchildren, and the kids would have somewhere to put their legs! Their enthusiasm for my cool scooter helped me to be less self conscious, even when they weren’t with me. When people stared and pointed and made rude remarks, I’d imagine my sisters were with me, with big beaming smiles on their faces as I drove them around.

My sisters grew into young adults – they wouldn’t fit at my feet on the mobility scooter anymore (even if they’d wanted to continue being transported in that way, which I highly doubt!). But when he started kindergarten, my nephew started riding with me instead. Every Monday during the school term I’d pick him up from the bus stop in the afternoon and take him back to my place, on my scooter, for piano lessons. He thought it was the coolest thing. He would sit high and proud on my lap, with his bag at his feet, and do a royal wave to everyone as we went past, like he was some kind of king riding away in his chariot. Awed voices of other school children would follow us as we rode away: “Whoa! Look at him! That’s so cool! How come he gets to ride on that thing? That’s awesome! I wish I got to ride on one of those!” It made me smile, every single time.

Since his brother also started school, the schedule has changed, and it’s been a long time since my nephew has ridden with me (his Mum now drops him off at my place and picks him up again afterwards). Without the frequent reminders of childish excitement about my scooter, I find myself having to work harder not to wither under the stares and snorts of derision as I ride past.

Recently, I passed by the local football field on my way to the store. It was early evening, and there were several football teams that had just finished training, and were also headed back downtown. That meant I had to pass a line of about forty fit, healthy, testosterone-fuelled guys. They were all young adults, about the same age as me. The snickering started down the end of the line and progressed to pointing, hooting and yelling. I wanted to ride my scooter into a hole and disappear. But although my knuckles may have been white from clutching the handlebars so tightly, I sat up straighter, gave them a cheery wave, and then proceeded to tune them out.

Eventually I got past them all, and was left alone to ride through a lovely part of the park. Trees, grass, flowers, birds. I took deep breaths and tried to ignore what had just happened. What I knew would keep happening as long as my disability was invisible. I rode down to the footbridge to cross the river, and found two boys sitting on the edge, fishing. They looked about 10 years old. They looked up as I came onto the bridge, and one of them called out to me.
“Hey miss!”
Inwardly, I cringed. “Yeah?”
“Is that your ride?”
“Yeah, it’s mine”.
“It’s pretty cool!”

For a second, I looked down at my scooter again with my adult eyes. The stuffing is coming out of the seat, and one of the handlebars is chewed up. The scooter is dusty, and rattles and whines noisily when I use it. And worst of all, it’s meant for old people – and I’m not old. But then I looked back up at him. His eyes were wide and sparkling as he beamed at me with an enormous smile. And I couldn’t help but smile back.

“Yeah, it’s okay. Thanks.”

He went back to his fishing, and I kept going, contemplating my scooter through a child’s eyes again, and smiling.

xx Sarah Phelps

How do you deal with it when people treat you differently because they can’t see your invisible illness? Personally, I wish I could just always shrug it off, but I have to confess that it does wear me down over time.

* In addition to Postural Orthostatic Tachycardia Syndrome (POTS), I also have Ehlers-Danlos Syndrome (EDS). One of the most frustrating symptoms of my EDS is hypermobile ligaments. Ligaments are the things that are supposed to hold your joints in place. But mine are super stretchy, and let my joints just kind of go wherever they want. That means frequent dislocations and subluxations (semi- dislocations).

Anna Kennedy: Nowhere Land

Today’s guest post comes from Anna Kennedy. Anna is a psychologist who became sick with severe ME (sometimes referred to as Chronic Fatigue Syndrome) and POTS.  Here, she thoughtfully discusses the mindset that has helped her navigate ‘Nowhere Land’.  I can really relate to the part where she talks about being able to do things that used to be impossible and how she thought she would never take that for granted again. Thank you Anna for sharing your experiences here.  I know that many will relate to your journey.

________________________________________________________________

He's a real nowhere mansitting in his

This is kind of how I feel these days. I have nothing much to show for the years since ME (Myalgic Encephalomyelitis) and its sidekick POTS (Postural Orthostatic Tachycardia Syndrome) became my constant bedfellows.  During the first horror year, when I was bedbound and lost 25% of my body weight, I at least looked the part.  ME was written all over my face, not to mention the rest of me which couldn’t stand up long enough to make a quick cuppa.  But nowadays I look pretty normal.

I’ve improved to the point that I’m more moderately affected with the odd severe dip thrown in just to keep me on my toes. My symptoms are less severe, but still unpredictable and frustratingly limiting. I’m too sick to hold down a job, but can manage paced domestic tasks and the occasional social event, all accompanied by the predictably unpredictable multitude of symptoms and payback that ME dishes out just for living.  If I lived in a silent dimly lit bubble and did absolutely nothing except lie down for 6 months, I expect I may even begin to feel quite chipper; but unfortunately there’s that little thing called Life that gets in the way of that.

These days I feel a gnawing kind of improvement guilt. I guess it’s probably akin to a kind of survivor guilt, a knowing about just how traumatic this illness can be.  Though the memory of severe ME is still fresh, I am not completely confined to my bed.  But I carry with me an awareness (that I didn’t have before) of the many who count my very worst days among their very best; who’ve lived for decades in a 24-hour terror of suffering so ghastly that it’s unfathomable for those who do not live it. I feel guilty that I was completely ignorant about ME before I was diagnosed. Guilty that I didn’t use my pre-illness years working as a health professional to recognise and educate people about ME and help those who I did not even know existed because they socialised online and lived within the four walls of their bedroom.  I feel guilty for improving when my friends with ME have not or have worsened and I still can’t do anything to relieve their suffering.

I feel guilty for not being grateful enough for the improvements I’ve made.  I remember when I was severely ill thinking that if I could just manage to cook a meal for my family again, I’d be fine with that. I yearned to load the dishwasher or take out the garbage. That was enough quality of life for me I thought. But then when I got there, the gratefulness that I tried to hold onto so tightly, slipped through my fingers.  Disappointingly quickly those domestic tasks, that seemed oh-so-shiny when I was too ill to do them, became dull.  Because, when I was at my most ill, I held on to a fantasy that improvement in functioning would naturally come with feeling well. But that didn’t happen. Instead, I moved up a notch from hellish to chronically cruddy.  So, when it comes down to it, I’m still sick every day; I can just do a bit more while being sick.  And I can hide it better.

These days I inhabit Nowhere Land.  I straddle the worlds of the chronically sick and The Well.  I move in two circles, in neither of which I feel I have a firm place.  To the doctors, I’m “managing a chronic illness”; I’ve gone to see the specialists who I hear may help, I’ve diligently tried their treatments and followed their protocols (most of which made me worse).  So I’m not really interesting to them now, because I’m not a success story but I’m not knocking on heaven’s door.  They’ve run out of ideas and just sort of leave me to it. I’m in Nowhere Land.

Socially, I’m a bit of a Nowhere (wo)man.  My friends with ME, the ones I made online when I was too sick for a social life and was lonely and desperate for understanding, those beautiful and courageous souls that I’ve never seen in the flesh, they’re mostly still here.  But I let them down because I’m not online as much and I miss supporting them when they need it most. I feel like my news of doing is deeply insensitive to their continued suffering, and I’ve betrayed them in having left the hellish world they still inhabit. I wonder if they feel angry when I vent and whine in our online support group about my trials which must all seem like problems they’d give their left arm to have. Little do they know, they are the precious thread of red wool that I use to wind my way back to comfort when I get lost in Nowhere Land.

Nowadays, I can also move into the world of the well.  Carrying around my knowledge of the unseen world of the chronically ill, I spend time with my in-the-flesh people. But I’m like some kind of odd expat who randomly pops in for unexpected visits.  Of those I’ve told about my illness, some have stayed and others have backed slowly away. Some I’ve backed away from too because their disinterest has hurt too much.  Those who have stayed have been patient enough to listen to my botched attempts at explaining ME in 100 words or less, and tried their best to understand its weirdness.  They’ve borne witness to my life with ME with curiosity and empathy. They’ve been repeatedly let down by my unreliability but kept coming back for more.  And they have stood patiently still while I’ve moved between my worlds. For these precious people, I’m grateful beyond words. I don’t know that I’d have done the same in their shoes.  These special people have made room for the ME in my life and put up with me changing from a mostly spirited, reliable and supportive friend, into a friend who is present with ad hoc inconsistency at best.

To the uninitiated, I’m better, as in recovered.  Because that’s generally the well person’s understanding of illness: you get sick then you get better…or you die. There’s no in between. There’s none of this living-with-it-on-and-on-every-single-day sickness.  “Gee you’re looking well” they say, and “I’m so glad you’re back on track”.  In reality I’m still an 80-year-old wolf in 43-year-old sheep’s clothing. Look more closely and you may wonder why I’m never really seen until the clock reaches pm.  At afternoon school pickup, you will notice I’m often the mum with wet hair and no makeup who shuffles to the nearest bench while the other mums stand around chatting in groups. I half listen but I’ve got little to say; partly because my one achievement of the day has been showering and getting dressed; also because to join them would mean standing up and losing what little remaining power my body has; but mostly because my brain-o-mush means I only absorb bits and pieces: I make a tit of myself by forgetting things they’ve just told me or making vague comments that trail off mid-sentence because I’ve suddenly forgotten what I was saying.

I’m the odd mum in my village; the middle-aged lady driving the nanna cart, wearing sunglasses in winter, head bobbing wearily as I trundle towards the classroom door, pale and nauseated by the darting movements and fingernails-down-blackboard noises that delighted children make when the school bell sounds. And, when he sees me, my 5-year-old chucks his backpack down in the middle of the schoolyard because he’s excruciatingly ‘‘barrassed‘ that I’m on my scooter and furious at this very public display that I’m sick again.  He knows full well it means, once home, Mum will shove Sao biscuits and jar of Vegemite on the table and stumble back to bed where he’ll visit me with a thousand bits of paper he’s coloured in and school notices to sign and stories of the big hurt on his hand from the awesome tricks he did on the monkey bars. And all the time my brain is blank and nothing’s going in, nada, zilch. And, because my body can’t seem to produce energy for ANYTHING, I have to remind myself to move my face into a smile, and let out uh-huhs and oh dears and kiss his hurt and make futile attempts at focusing my eyes on his drawing of Batman fighting the alien dude.

Before he leaves my bed, he reaches into his pocket and pulls out another little thing he’s collected today. He’s been doing this since I first became ill, before he was old enough to speak the words of what was happening to his mother.

He places a little white stone on top of a mounting collection of feathers and rocks and shells on my bedside table, precious gifts from him to me. “Thereyar Mummy, to help you get better”. If only, if only, my darling.

Over the years, I’ve started to run out of words to explain ME.  My brain scrambles in my efforts to describe its convoluted-ness in simple terms.  Also, telling the story of ME and my experience with it makes me feel vulnerable. It’s like peeling a bandaid off a wound that hasn’t healed and waiting for peoples’ reactions: some recoil and quickly er-hum their way out of the conversation; others start to get that suspicious look of disbelief I’ve seen too many times and which never fails to hurt to the core; many show great caring which can either make me weep with embarrassed relief or go on to gush in a tidal wave of oversharing.   For those curious enough to ask more, there is, frustratingly, never a straight-forward answer to the questions that follow: What causes it? What’s the treatment? What’s your prognosis? Why haven’t I heard of ME, oh CFS yes I’ve heard of that, that’s that chronic fatigue thing? Do you know about XYZ [insert helpful suggestion of treatment or name of alternative health practitioner here]? You’re looking good, when can you go back to work/ use your spare time to paint/help out at the school fete/come jogging with me?

At times, I’ve wanted people to know about the parts of my life they don’t see. I’ve explained that when they don’t see me for long stretches it’s because I’m more ill and horizontally resting so that I can be well enough to do things again. Hoping not to sound like a whinger, I’ve provided a few details of the limited routine I follow to tread the fine line between semi-functional and not; how a “pretty good” week is still one with 2-3 days spent in bed; and how I live every day with pain and nausea and trouble being upright. They listen and nod and say kind things, but I can see they can’t really fathom how the person in front of them who looks alright has any kind of illness at all.  And I understand all this, really I do, because that would have been me a few years ago.  Listening and nodding, but inside going Huh?

So that’s where I am. Sitting (well, mostly lying) in Nowhere Land:  the world of moderate ME.  In and out of the world of the well and the sick.  Making all my nowhere plans; ideas that so often don’t come to fruition because ME has its own agenda.

But how does that song end again?

Nowhere Man, don’t worryTake your time,(1)

And, I’m reminded how very blessed I am.  I have my people, the souls behind the screen and in the flesh, the ones who buoy me, teach me, and love me.  And, even in my Nowhere Land, my people find me, and they meet me where I am.

Erika-Louise: New Normal

Dysautonomia has affected every single

I can’t remember the first time I ‘met’ Erika-Louise online. I just feel like I have always known her. We have chatted a lot over the time we’ve known each other and I am an avid reader of her blog.  Erika suffers from what is, according to experts in the field, the worst case of Auto-immune Autonomic Ganglionopathy in the Southern Hemisphere.  She has been studying medicine and describes her illness in a characteristically matter of fact way.  She’s not given to feeling sorry for herself, but I don’t think anyone would ever judge her if she did.  Her life is tougher than most. This post (with her sanction) is a bit of a mash-up of some of her blog writing so she can tell her story. She’s currently back in hospital and working on a gruelling rehab program and unable to write a bespoke post. She aims to regain the functioning she had worked so hard to achieve before another infection undid all her previous gains. I am always impressed with Erika’s true grit. She’s someone I admire and I am delighted to have her words here on my blog.  So, here she is, she’s one of my ‘Invisible Illness’ sisters-in-arms, a fellow blogger,and a thoroughly fantastic person.
Welcome to this edition of the Meet my Peeps Guest Series:

Meet My Peeps“I’ve been on the roller-coaster that is chronic illness for about four years now and it feels like a lifetime. My name is Erika and I am a 26 yr old girl from Australia with very severe Dysautonomia in the form of POTS (Postural a Orthostatic Tachycardia Syndrome) and AAG (Autoimmune Autonomic Ganglionopathy). These conditions have affected almost every system of my body negatively. Both conditions can be extremely debilitating and in my case they have been quite significant. Almost every autonomic function of my body has been impaired and I rely on a huge array of medications and intervention therapies to get by day by day.

It’s a life that I would never have imagined for myself.

I have spent a grand total of 6 months at home since 2010 whilst the rest of the time I’ve essentially been ‘living’ in the hospital as an inpatient. It’s sad to say it, but true; it feels like my second home.

I was admitted in early 2010 when my body decided to demonstrate the beginning of many autonomic problems. My first discharge was not until August 2013. I spent about 6months at home & returned to hospital in February with another nasty infection. And here I remain…

Dysautonomia has affected every single aspect of my life. It has also taught me so many things about; myself, my amazing family, who my true friends are and some unexpected saddening realities.
I’ve decided to write a blog as I want to share my journey, my trials and tribulations and my story. I have made a conscious effort to not become my illness, rather it be only a part of me. I don’t often go into any detail of my life and thought that this might be an avenue to vent, chat, express & be inspired by others in similar positions.

“As of right now, I cannot sit up unsupported, stand, walk & raise my arms without losing consciousness, every single time”.

Everyday life brings unthinkable challenges for me and so many others living with chronic illness. Having an invisible illness like Dysautonomia can be very challenging as people cannot always see the health problems and so find it hard to understand, empathise and relate to the new ‘me’.

My dream in life is to complete my university medical studies & live an independent life doing basic things like walking, standing for periods, doing my hair & other basic bodily functions that I will not go into.
I just want my life back.

Before Dysautonomia I was so….normal. I was your typical girl with everyday problems who loved to socialise and soak up life’s best offerings (including cocktails). I had completed my studies as an Occupational Therapist and commenced studying a degree in Medicine to eventually become a doctor. I had the strong desire to study medicine after going on my practical experience as an OT in both a hand therapy unit and especially a neurological rehabilitation ward. I wanted to know every detail of the persons medical history and how and why everything happened. It’s quite ironic now that I am lying here on a neurological ward where my ambition for further study started. I have had to withdraw from the course in spite of completing some of the papers from bed. It is heartbreaking.  You can read about that here.  I guess for now I’m still hanging onto the hope that sometime in the future I will get well enough to be physically and mentally capable of achieving my dream.

My beautiful family are my rock. They’ve all endured so much as a result of my illness. I am certain I could not get through this without each of them. All five of them are part of my team and help me everyday to keep hope and belief that things will get better. My mum is an inspiration. She has managed to be at my hospital bed almost every single day without fail. She works full time as the leader in a high pressure job and is always on the go. I actually don’t know how she does it all. My dad, another amazing man. He’s beyond caring & is always worrying about me. Between his full time work shifts and mums work he visits me any day he can, even when tired after night shifts etc. They both live at home with 2 of my siblings whilst my other sister lives away.

For now I take each day as it comes. I embrace the positives as much as I can and try to push through the negatives and make them work for me. Recovery and healing is hard work on so many levels and I will continue to persevere in hope for the next good day to come”

-Erika Louise

(Rach says: I’m sure Erika-Louise would love you to come and visit her on her blog.  As a fellow blogger I can say that there is no bloggy encouragement quite as fabulous as a comment when you are feeling discouraged 🙂 )

 

It’s a Damn Shame

 

source
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This morning I was chatting online with another Dysautonomia patient.  She has Neurocardiogenic Syncope, one of the types of Dysautonomia, where I have Pandysautonomia, another type. We are both in the same city; we are from similar socio-economic backgrounds and both fall into the same District Health Board zone. We have seen the same doctors.  But the treatment we have both received has been different.

On seeing the same specialist, about the same issue (recurrent fainting), she was told she was ‘faking it’. I was given a room of my own in the public cardiac ward and fitted with a pacemaker to stop the faints from occurring. I don’t know the ins and outs of her medical history, so this is not an entirely objective comparison.  But I know that her new cardiologist takes her condition very seriously indeed.  So seriously he admitted her to the cardiac ward before and after recent surgery so that he could monitor and treat the various issues anaesthetic drugs and surgery would create with her autonomic nervous system.  She is no ‘faker’.  Another friend with Dysautonomia, in another part of Auckland, has been abandoned by her District Health Board altogether.  She struggles, largely bedridden, without medical care of any kind.

Many patients with our diagnosis endure consultations with Specialists who cast aspersions on our authenticity.  I can only conclude, that ‘fakers’ must occur frequently in doctors offices.  Otherwise, I can’t understand why it would be such a ready conclusion to be leapt upon?  Perhaps, when the answers aren’t easy to find, some doctors find the alternative of ‘the faker’ patient more palatable than saying “I don’t know”?  It must be difficult as a doctor, as someone who relies not just on their years of experience but also on their mental accuity, to consider that they don’t know what is wrong.  Is dealing with not knowing, ever part of a doctors basic training?  Do they cover what to do when they are faced with a patient who doesn’t fit within their current paradigm? Perhaps medical school is where a doctor learns to make the judgement of “faker” in the first place?  Doctors, Specialists, I would love your perspective on this if you are reading.

I remember sitting in a doctors office once.  I was very ill.  I’d been fainting for most of my post-adolescent life. He explained that were I a young woman, he might think to ask me about my relationship with my mother.  “Some young women who don’t get on with their mothers have a tendency to hysteria and unexplained ‘fainting’…” he mused.  I waited for him to smile and tell me that thinking like that used to occur in medical circles oh, around the time of Austen.  But he wan’t joking. He continued “you seem a reasonable person…” and proceeded to discuss the treatment he had planned for my actual symptoms and the signs visible in my tests.

I think I was a lucky one.  My profession lent me some respect.  My manner seemed ‘reasonable’. My age at diagnosis was clearly an advantage (lucky me, I’d been sick for longer than some of those poor ‘young women’).  My test results were dramatic. The fact my husband works in the Health Sector and was a familiar face possibly also lent some significance to my case.  But should it need to?  Should younger patients have the onus placed on them to prove that they are in fact emotionally stable?  Shouldn’t objective tests be recognised and patients treated impartially?  Should doctors not err on the side of “I don’t know” rather that “you are a faker”?!  Is it so painful to not know?

We rely on doctors to be scientific; objective.  But doctors are human. The sum of their personal and professional experiences contributes to their professional values.  They come to their praxis from their own unique place on the values continuum. They have ideas already entrenched, in relation to some conditions. Sometimes these ideas are there because of experiences with previous patients.  I did once see a doctor who referred to people with my diagnosis (then, it was POTS), as “you people”. Sadly, fainting has for centuries been considered a ‘female failing’ a sign of a ‘weak constitution’.

Michelle Roger, an Australian Dysautonomia Advocate and Health Activist, recently wrote an excellent article about when being a woman is an impediment to medical care.  I urge you to read it. It’s an issue that needs to be discussed more in community forums. I and other patients with rarely diagnosed diseases or chronic invisible illness welcome any opportunity to discuss these issues with medical practitioners.  It all starts with the sharing of articles like Michelle’s.  With engaging in discourse about why some doctor’s offices provide this shaming and difficult experience for many genuine, female patients.  It’s not on.

It’s a damn shame. Being laid on the wrong shoulders… and it’s got to change.