Kendall Carter: In the Pink

In the pink… an expression which describes the look of good health. But what if your health isn’t good? Can you still look gorgeous? My friend Kendall looks just like an exquisite porcelain lady doll. She is redefining what it means to be ‘in the pink’! She is one of the sickest people I know yet she blows my mind every time she posts a photo. So stunning! I am so delighted that she agreed to write a guest post for the ‘Meet my Peeps’ series, because I think her voice is so important.  But it hasn’t been easy, since I asked her if she’d like to do a piece, she’s been in and out of hospital at least four times.

Kendall, I so appreciate the efforts it took to write this piece for my blog.
Thank you so much! x

Kendall has a complex medical picture. She is diagnosed with progressive Autoimmune Pandysautonomia. It causes POTS, gastroparesis, subacute urinary retention, breathing issues, CIPO, swallowing difficulties, temp regulation issues, small fibre neuropathy, pupillary dysfunction, anhidrosis, IST, supine hypotension, orthostatic hypotension, syncope and the other usual autonomic dysfunctions typical of Dysautonomias. She also has Median Arcuate Ligament Syndrome (MALS), Hashimoto’s disease, demyelination disease, hypothyroidism, endometriosis, adenomyosis, chronic rhinosinusitis, chronic neutropenia, PCOS, pernicious anaemia and issues related to the malnutrition from gastroparesis.

And she is beautiful.  Read on, all about her journey into better self esteem and how she expresses her individuality through beauty, fashion and social media…

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Yes, let’s start this post bragging about what an inspiration I am and.. wait, what!? When did I suddenly become an inspiration? Beautiful? Confident? Calm? What’s all this about? Did someone start paying these people off?

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Let’s rewind. My name is Kendall. I have a chronic illness. It sucks. I spend a lot of time in hospital and an obscene amount of time in bed. But I also like to play dress up, usually just to go to a doctor, hospital appointment or even just if I’m staying at home, seeing no one apart from my significant other for a couple of hours when he gets home from work. At first I never questioned why, I suppose it was because my appearance was one of the only things I still had control over. I’m no great beauty and I’d never been the type to dress up, let alone slather on a full face of makeup and prance (well, roll) around in pretty dresses just because it made me feel good about myself. I was the jeans and t-shirt girl. The girl people would laugh at if they saw me in a dress. I actually recall quite vividly a friend stopping me in the street one day. She had a good laugh that I, for some unknown reason, had chosen to wear a dress that day! I didn’t wear a dress again for years. The quintessential tomboy, the shy little wallflower that wanted to perfectly blend into her surroundings… that was me back when I was healthy.

If my past self could look at my current self, health issues aside, I imagine she’d screw up her nose, call me too girly and make fun of me. PINK hair? Pastel at that! A floofy cat dress, complete with a bow tie? And what’s with all this damn lace everywhere? It’s almost as if I’ve done a 180 in a couple of years. It all started when a group of wonderful friends from a support group got together to organise a hairdresser to come to my house. She dyed my hair a beautiful pastel pink that I had been considering for quite some time. I had just gotten an NG tube and was curious about this pretty pastel hair trend that was going around. In the back of my mind I wondered if I could be the girl with the pink hair, instead of the girl with the feeding tube hanging off her face. It worked, and it was probably the best thing that ever happened to my self-esteem. You may be able to tell from my mentions of wanting to be a wallflower but I was, and still am to an extent, a very timid girl. Standing out was not my thing. I’d never dare admit to wanting to wear those pretty, glittery shoes, that beautiful floral dress with lace inserts or that adorable clip on hair bow back then. They were for other people, no matter how much I lusted after them.

Show the world you're still you, because(1)

I believe that my chronic illness, starting with being brave enough to go ahead with the pink hair, opened up many doors for me in regards to my self-image and self-confidence. I’d lost so much. I felt there was nothing I could possibly gain after the trauma of losing my health, my job; my whole life, as I used to know it. Sounds overly dramatic but that’s what it was. A sudden onset for me. All my losses happened, quite literally, overnight. But out of this mess, I gained confidence. I finally gained the tools I needed to not care so very deeply about what people thought of me and how I appeared to the world because after what I’d been through, any opinions on something as superficial as my appearance could hardly mean much at all. Really, what’s someone asking if my hair colour was a dare? Not much compared to coding yet surviving on an operating table in the middle of a life-saving operation. At 30. Yeah, it’s totally incomparable.

With my slow but steadily rising new found confidence I started shyly posting selfies of myself when I was a bit dressed up. Selfies were not something I’d usually do! I’d always worry too much about people thinking I was narcissistic, or that I wasn’t pretty enough, and all those things that people with low self-esteem think. My confidence took off even more as I received a few compliments here and there and started connecting with the chronic illness community via social media through images. Images of the good times and the bad. The dreadful unwashed hospital selfies, the tubes, the lines, the scars …but also the nicer times, of dressing up, of makeup, of pretty hair and cute collectibles. I’d become this girl with the pastel pink hair, fancy dresses.. and a NG tube on my face. Somewhere in there, I finally found the confidence to be me even with a feeding tube prominently displayed! Without knowing it, seeming to also inspire some people along the way. No one just considers themselves inspiring and rarely sets out for that to be their goal. It just.. happened. In finding and helping myself, I’ve somehow helped other people and even if that’s only a couple of people in a small way, it’s certainly more than what I was doing before.

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There are several movements with a focus on looking good or glamourous, even though you feel like you’re falling apart, that have taken off on social media. Karolyn Gehrig’s #HospitalGlam  (and you can find her on Instagram @karolynprg) is the most widely known. Some other friends or followers have created their own hashtags or names for modelling while on bed rest, such as #bedrestmodelling. When not feeling too great, people are creating poignant portraits that are beautiful in many different ways. I definitely recommend checking out some of these hashtags if you own an Instagram account.
(Ed: and you can find Kendall’s instagram account here: @Kendelfe it’s a confection of pink!)

Show the world you're still you, because

I personally just like to have fun with my style and there aren’t too many times where I’ll refuse to waste the extra energy into putting on the best damn dress I own, spending probably a little too much time on my makeup and stumbling into my doctor’s office or hospital appointment looking like I was going out somewhere special. Some people might say that their ‘spoonsmight be spent better elsewhere and I can’t argue with that. Others may say that their doctor may not believe that they’re ill if they don’t look sick but my argument is that if you have a good doctor or specialist, they’ll know. My doctors know me well enough to know that if I’ve no makeup on then I’m not doing too good at all. One claims I have an “Emergency Department face” when I walk in and will know straight away when things aren’t looking too good for me, even if I am dressed up to the nines. I do believe that attention to presentation can play an important part when it comes to others seeing how to feel about yourself as a person, and in showing that you’re still you and (as @minadraculada said in one of the opening quotes to this article) that it’s not over bitches, that you’re still you, still have control and that you’re still standing.

In closing, I suppose I wanted to express how you can still make gains even when you’re quite severely ill, whether that be through your appearance and fashion, a new hobby, new found friends or something else. I also wanted to show that just because we feel ill doesn’t mean we need to act or look a certain way, the way society often portrays the disabled and/or ill. Show the world you’re still you, because you’re still beautiful even if your body might be a bit broken. My only regret through all this is that I didn’t find the confidence in my appearance that I have now back when I was healthy but ironically, if I had remained healthy, I probably wouldn’t have.

Thank you for reading, and thank you to the fabulous and always lovely Rach for posting my piece!

Sarah Bowen: So, I must be fine, right?

Today on the blog Sarah Bowen is talking about Scoliosis, surgery and chronic pain. When I started up the ‘Meet my Peeps’ series earlier this year, to broaden the sharing and to introduce you to some of my favourite people, I knew that you would like them as much as I do. Many of my peeps, like me, have invisible illness or disability and all have chronic conditions.  Things that just don’t go away.  All of them are awesome people with relatable stories.

A lot of my ‘peeps’ are actually people I have never met in person.  We meet online, in the patient forums, on portals related to chronic illness and also, in my bloggers group.  Sarah is a fellow Pipster (that’s what we call the alumni from the Blog With Pip course) which is how we became blogging friends.  She has a gorgeous blog called The Routine Queen where she writes about all aspects of being a mum and something dear to her heart, organisation. I first bonded with Sarah when she wrote about the challenges of being an introverted Mumma.  You can read her post on that, here.  Then we got talking and I discovered that Sarah too, has an invisible, chronic condition.  She writes here about living beneath the radar.

Do you suffer from chronic pain, too?  Come and say hi!  Here’s Sarah:

Many people are surprised to hear that I

Seven years ago, when I was twenty five years old I had major back surgery for scoliosis, a term used to describe curvature of the spine. The decision to have the surgery was a big one. I was told if I left my back as it was it would continue to get worse and could end up causing major health problems (think squashed organs and a wheelchair). But the real deciding factor for me was that the severity of the curve in my spine would make it difficult to carry and naturally birth a baby, something which I was looking forward to in the not so distant future. So the decision was made to have the surgery. Little did I know how much it would change my life.

Recovering from the surgery was intense. Almost three weeks in hospital and three months in a full back brace. At the beginning I couldn’t walk more than a few steps assisted before I was exhausted. Sitting for longer than a minute would leave me in tears. I couldn’t brush my hair, have a shower or go to the toilet unassisted. It was hell. I was told that after six months I would be ‘back to normal’ but its six years on and I’m still waiting.

Many people are surprised to hear that I(1)

There are lots of questions surrounding the surgery and my recovery. For example, I was told a small portion of my rib would be taken to gain access and help ‘fuse’ my spine together. I was told it would grow back (as the front of your ribs are actually cartilage not bone, they can regenerate). What actually happened was three of my ribs were removed and they never grew back.  There was some other complications and lasting nerve damage. I am in pain every single day. Obviously not as intense as the first few months following surgery, but still, the pain is there.

I spent years looking for the answers. Why did this happen? What was causing the pain? How could I make it stop? I went to chiros, physios and osteos. I tried different forms of exercise and natural therapies. Nothing worked. After many hard days I had to face a hard realisation. This was how my body was now; this was how it was going to be.

Many people are surprised to hear that I am in constant pain. Because I rarely talk about it people assume I’m fine. I manage to live a normal life, I work, and I participate in normal activities so I must be fine right? I think for people that suffer from chronic pain there is a certain point where you just learn to live with it, your really don’t have any other choice. And so you get on with life. You stop talking about it because you’re sick of talking about it and you’re sure everyone is sick of hearing about it!

Since my surgery I have become a Mum. I have a three year old boy. When I was pregnant I was almost pain free (must’ve been those hormones, someone please learn to bottle that stuff!) but it quickly returned after giving birth. I’ve had to learn to manage. I could never carry my son on the right side of my body, it’s not easy for me to bend down and pick things up from the floor (not fun when you have toddler!) And I have to grit my teeth when people give me a hug because it really hurts! There are days when I’d love to just lie in bed with a heat pack on my back but of course when you’re a Mum you just can’t do that!

Cold weather is a killer, my body kind of just seizes up. Needless to say I’m not loving winter in Melbourne at the moment! I have days when I have a sook to my hubby about it, I might mention my back is particularly sore, on those days the pain is probably more of a 7 or 8 than its usual 5 out of 10. But most of the time I remain silent because I figure there’s nothing that can be done. I try not to think about it, I try to focus on other things and keep busy, that’s my way of coping.

Another thing that helps me cope is knowing I’m not alone. So when I came across Rach’s blog I was inspired to send her an email, I just needed to tell her ‘I get it’. I can really relate to so much of what Rach shares here on her blog. So I was extremely honoured when she asked me to share my story with her readers. And now that I’m here in this space I’d love to hear from you.

If you live with chronic pain how do you deal with it?

What things help you cope?

What have you discovered that helps you both mentally and physically?

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

 

 

Jessica Bee -Telling Tiles

Today’s ‘Meet my Peeps’ Guest Post comes from Melbourne. Jessica Bee is a dear online friend of mine, a social extrovert (rare flowers in the online world, those extroverts!) and a social worker.  After researching tirelessly, she embarked on the Levine Protocol and has seen remarkable gains with her Pandysautonomia, so much so that she has been able to return to part time work and is beginning to rebuild her life.  Jessica is generous with her heart, her time, her support and her wicked sense of humour. Here, she gets reflective and discusses her journey into illness, the impact on her relationships and the gains she has made. Oh, and the state of the tiles in the shower. I know! You can already relate!  Those tiles always tell the truth!

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Your body doesn’t give up the game at thirty. Thirty is buying houses and maybe having kids, and travelling and learning to bake. It is getting past the drinking until you fall over. It is realising your parents are just people like you and getting your cholesterol checked for the first time in your life. It’s breathing a sigh that you escaped your twenties without major organ damage, bankruptsy, untreatable STI’s or pleading insanity. Thirty is the calmness of finding the person you plan to set up house with forever, or realising you just want to set up house with two of every animal (and maybe a few extra cats thrown in for good measure).

For The Doc and I, thirty was meant to be about having babies and getting married and juggling careers and family.  We were meant to be having dinner parties, just to discuss that struggle for the rest of time. It was meant to be about life being easier, more predictable, and nourishing and fulfilling in every way. We were meant to have adventures, until the arthritis would set in.  After that, we were meant to creak along together until one of us forgot the other’s name, slowly fading away until there was nothing left of us in the world.

But then I got sick. I hit 30, and my body hit pause. The onset was sudden, as it is for many of us. One hour I was at the gym in my matching gym wear and shoes with complicated arch support; the next hour I was home, on my couch, and I could no longer stand. Then I was in an ambulance, in those same clothes, not knowing that I would not put them on again for almost 2 more years. They scratched their heads. Something was wrong, but they didn’t know what. They watched me and speculated and collected body fluids and blood. They dehydrated me and scanned me, prodded me and watched my heart through their wires. When that failed, they read the journal articles I brought them. I was in hospital so regularly; I was never sure where I was when I woke up.

I slept with the lights on for 6 months. I woke The Doc, panting and terrified, and he was left to decide if I had crossed over from ‘feet up the wall and wait’ to ‘ambulance’. When they told us what was wrong, it was The Doc who remembered the positive things- that it was likely (in reality, this was only a possibility) I’d feel much better within 5 years, that it would not kill me; that I would be ok. That he would be there by my side for the five years and then we would live our forever again. I remembered only the bad- I was sick. I was thirty and sick. I was thirty and couldn’t work. I was thirty and couldn’t give my partner the kids we had promised each other. I was thirty and I couldn’t even clean my shower.

If a doctor's time is gold, then(1)

He meets more of my needs than a man should ever have to, and this isn’t counting the ones he knows I have that I’m not yet aware of. He also, deep in his bones, believes that the only space in a shower that needs to be clean is a 30cm square where you stand under the water. True story. For a whole year the area outside of that 30cm square taunted me with my inability to give him this one simple pleasure that he wouldn’t even know existed- a secret between me and the world, something I did because somewhere in him I was sure he enjoyed the glisten of the tiles exactly like I did. And somewhere else in me I was furious at him for not just knowing that those 3-tone-mouldy tiles captured the complete failure of my body. Why couldn’t he just clean them, so I could stop being taunted as I gasped and groaned through every barely conscious shower?

Being sick like this, it is easy to feel like a terrible human being for being cranky because your amazing partner doesn’t clean the shower the way you want him to. It was only when I allowed myself the luxury of a normal relationship (including being cranky sometimes) despite being sick that I began to rediscover my worth. I couldn’t vaccuum- but I could give him undivided attention when he told me about his work. I couldn’t make him dinner- but I could scratch his back when he was falling asleep at night. And I sure could get mad at him for not cleaning the shower.

Most of my friends are gone. It’s a simple reality of being sick- you’re different, they are not, and simply put, they have no comprehension of what you’re going through. They might not care much, or they might not understand that in the bleak tarry mess of early days with dysautonomia their mere presence could have lead you out of some of the blackest waters you have ever known. Maybe they are scared of saying too much or not saying enough… or saying the wrong thing.

The luckiest thing that has happened to me (aside from somehow charming The Doc into my life) was finding other people who live like me. Words are stabbed into the keyboard like the slurring that ensues after two bottles of cheap red wine. Yet without the haziness, morning regrets and pap smears. Unless you have ever had a need to, you can’t begin to imagine the comfort gleaned from knowing that somewhere in your 3am, a friend is in her 3am too. Suddenly your world is no longer tumbling away, or even if it is, you’re tumbling together and by 4am you’ll have hit either rock bottom, or sleep. I don’t know how I would have made it through without The Doc- or my Dysautonomia group. Finding your herd and knowing you’re not the only one with stripes*.

The Doc still hasn’t cleaned the shower. I was one of the lucky ones who, for reasons unknown to the medical world, have gained function back after the first few years. I haven’t recovered, but I’m cleaning the shower, and somewhere, deep inside The Doc, he knows the joy of glistening tiles again.

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*The ‘stripes’ reference relates to a common saying in Medical circles.  When Med students are training, their seniors will often say with regards to diagnosing patients: “if it looks like a horse and it sounds like a horse, it’s most likely to be a horse… not a zebra”.  And so the zebra has come to represent patients with diagnoses that weren’t ‘the horse’. Patients with rarely diagnosed diseases sometimes refer to themselves as ‘zebras’ or refer to their ‘stripes’.

Margot le Page -What If?

watercolour splodge with the words 'What if this is as good as it gets?" in white text

This Meet My Peeps guest post is written by a friend I met in my patient group. Margot Le Page is a wonderful writer and a gutsy person.  She asks a question each of us comes to at some point in our chronic illness journey.  And answers it in a powerful way.  I think you’ll agree that Margot’s perspective is worth sharing. Thanks Margot for sharing your story here.   -Rach

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I don’t remember when I first heard this question. It’s not original.  However, I do remember asking myself.

The first time was a couple of months after a 9 hour massive back surgery to correct and stabilise my spine which was basically collapsing. I had scoliosis and ‘rotting ‘discs. I was 47.

I had led an exciting and complicated life to this point. From Oxide Street, Broken Hill to Rodeo Drive Beverly Hills, 2 marriages, 2 beautiful children. I was confident, extrovert and capable.

But, I had always been a bit sick. Nothing too major. Adenoids, allergies, appendix, basal cell carcinoma, pretty much the full a-z, all the way to ’zoans (ie protozoans my gut!) But seriously, nothing really hit me hard and I always recovered, following my Mother’s belief that we were a family of self-healers.  She should know after all, surviving an aerial gliding accident, 36 and pregnant, resulting in massively traumatic injuries including a leg amputation and the awful loss of the little girl, Helene Julia, she was carrying.

I had been given the ‘bad news about my back when I was 17. I was training to be a paediatric nurse with access to great doctors and highly respected specialists who told me it (my spinal curvature) was going to get worse and I would eventually end up in a wheelchair. I heard them but certainly did not actually believe them.  Well, not on the surface anyway. Denial can be a nice safe place sometimes.

Maybe, just maybe somewhere deep inside my head I knew those boffins were right and I proceeded to live my life in a hurry, keen to get away from that place. I sought care and treatment away from conventional medicine and explored a myriad of alternative treatments. You name it, I’ve tried it. Acupuncture, absent healing, aromatherapy, cranio-sacral therapy, osteopathy, a Russian Mystic, numerology, past-life, sacred oils, Indian Brahma Kumari meditation. (I’m sure there’s another a-z here too!)  I studied Reiki and nutrition, Pilates and yoga.  And spent a lot, I mean a lot, of money along the way.
Needless to say, those know-it-all doctors I had seen many years before were sadly, pretty right.  I came back to Australia from the US to seek conventional medical wisdom in a country where I trusted the system and had family and friends to support me.

So, there I was. Single, adult kids doing their thing, a long way from Los Angeles and my ‘other’ life, in a reconstructed body I couldn’t yet drive, barely surviving on social security, fighting a bitter divorce, needing opioids, wearing an awful shoulder to hip brace, using a walking stick…… pretty bloody depressing actually.  I cried and cried for lots of things.

And then somehow, with no tears left and a couple of truly wonderful friends helping me, my head not really together, I asked myself the Big Question. “What if this is as good as it’s going to get? Can I actually, really live like this? Maybe forever?”  The answer came… not immediately. But then I surprised myself with a resounding. “Of course I can!”. My thinking changed. I recalibrated. I thought of all the things I could do, not what I couldn’t. I didn’t feel so bad after all. I could get on a tram 600m from my front door when my drugs kicked in, and with one stop would get me to a bank, post office and supermarket. It might take all day, but, I could manage. I began to notice little things again. Cracks in the footpath where tiny daisies pushed their way through, sunlight playing through my blinds, sounds of birds and crickets….. I was all right.

11 years later I’m asking myself that question again.
5 further back surgeries, broken rods, pulmonary embolisms, dural tears, spinal fluid leaks, a craniotomy, I even had my gall bladder out in there somewhere too and my finger stitched!
I now have 13 vertebrae fused (great posture), increasing numbness and weakness in my right leg and a new diagnosis, Dysautonomia. Great?  Not.  Terrible? No.

My dear Mother, now aged 85, only 27 years older than me, currently not in great shape, has taught me so much. So, if, if, I live to her age, can I go for another 27 years like this, like I am now?
Of course I can.  Not ideal, but….. (big breath)

There will be more challenges ahead, I know that. I will no doubt ask myself the question again, probably more than once.
With less I have become more.
I am a good mother, a good partner a good friend.
I don’t mind me.
I am fortunate.

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 🙂 )