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

 

 

Jess Cochran: Mind and Body

Two weeks ago, another patient from the Dysautonomia community in the USA took her own life. Suicide is so hard to talk about, as is the mental illness that can make it appear like a good solution. Today in my Meet My Peeps guest series, Jess Cochran talks about her own battles with mental health.  I applaud her willingness to discuss such a difficult aspect of life with chronic illness.  Patients who suffer with long term illness may not always address their mental wellbeing in addition to their physical.  Some may be trying and not able to access the help they need.  It’s an area for vigilance, for patients, their friends and their families.  In this piece, Jess discusses the frustrations she experiences with mental health services where she lives in Melbourne Australia. Please find her helpful list of links at the bottom of the page.  If you are also in Australia, and you or someone you know is struggling, the links Jess has provided may just make the difference.

Have the discussion.  Make today the day you talk about it.  Life is a precious and valuable thing.

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I often get frustrated and upset, not

I’ve been on this trolley in emergency for so long now, watching the nurses flit backwards and forwards. Feeling a jolt in my stomach every time one passes by, hoping that there is an update…that finally I might get off this hard trolley. I was brought in by the mental health team to be monitored and assessed while they tried to get me a bed somewhere longer term. I’m quite used to processes like this; lying in emergency has become a regular thing over the last few years. Sometimes it is for monitoring physically due to heart trouble, or injuries from falls.  Sometimes for my mental health. I know the drill. But I had never been there for this long before.

Being brought in wasn’t a surprise, I had been struggling quite a lot mentally. There was the body breakdown I had been experiencing, mostly from my POTS (Postural Orthostatic Tachycardia Syndrome) but the pain had been eating away at me too. I have multiple conditions. I am usually an upbeat, chirpy girl. But I was was slipping into a low depression. I had reached out for help and this emergency stay was he first part of getting a mental health admission sorted. However I didn’t expect to be here this long.

That worker bee, whose job it was to seek out hard-to-find beds, had been working hard. But there had been no luck. Difficulty finding a bed wasn’t unexpected, but being in limbo for all this time in the emergency ward was. I’ve been dealing with the psych system from the age of 12; my first admission was in my first year of high school and then things had continued from there. I knew only too well how it all worked. Though I do notice, in the last few years it has become much more difficult.

Since my wheelchair came along my admissions to psych have become very far and few between. First I started to get turned down for admission with the main psych hospital where my treatment has been for 10 years.  That was on the basis that I am disabled and too ill (even at times when my symptoms were not so severe and my physical health stable). Sometimes it seemed like inpatient psychiatric units chose to not take on patients like me, with complex physical illness (even if managed) and in particular, mobility aids. It’s seems that people like me get put in the too-hard-basket. Perhaps they expect that some other place will take on the patient. So far I have only come across two psychiatric hospitals that take on people with mobility aids, both of them being private. This is extremely frustrating and not good news for people with mental health needs who fit in the disability category.

When I have spoken to many fellow sufferers of debilitating chronic illness and/or disability I was initially glad that I wasn’t the only one that experienced a massive fluctuation mentally.  I wasn’t alone and that made me feel a little comforted. I often get frustrated and upset, not just for myself, but for others like me. It’s hard to deal with the fact that sometimes, for some people it all gets too hard. Almost a year ago now I lost a very dear friend who had been battling with debilitating illness in similar circumstances; she found it so tiring and frustrating that nobody out there was able to ‘hear’ her… and most of all help her. She slipped further and further into depression with only a handful of people knowing it was happening. And then, just like that I had a call telling me that she had gone…another life lost to a system that doesn’t always know how to respond to complex cases.

In a society that has been talking about the strong links between mental health, physical health and emotional health I find it very shocking that things are the way they are.  Even with the strong messages out there, to keep an eye on yourself, to ask for help; there doesn’t seem to be accommodation to meet the needs of people with complex conditions who ask for help.

We shouldn’t have to be scared of reaching out for help in fear of being stuck in limbo in a busy Emergency ward, trying desperately to find somewhere to go, or even just to be put on the waiting list. We shouldn’t have to lose friends and fellow sufferers not so much because of the battle they are having with their body but the battle they are having with their mind and complications of a system that isn’t helping. Mental health care is vital for a person who is dealing with chronic illness. Whether that be support from friend, family, fellow sufferers or psychiatric services, it shouldn’t be the case that you have to put on a brave face all the time.

The time for change is now, its all very good for the medical teams to talk about caring for MIND, and body…but can they put this theory into real action?

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If you, like Jess, live in Australia and are worried about yourself or a loved one please contact one of the following for support:

Black Dog Institute
Information on symptoms, treatment and prevention of depression and bipolar disorder.

Carers Australia
1800 242 636
Short-term counselling and emotional and psychological support services for carers and their families in each state and territory.

Headspace
1800 650 890
Free online and telephone service that supports young people aged between 12 and 25 and their families going through a tough time.

Kids Helpline
1800 55 1800
A free, private and confidential, telephone and online counselling service specifically for young people aged between 5 and 25.

MensLine Australia
1300 78 99 78
A telephone and online support, information and referral service, helping men to deal with relationship problems in a practical and effective way.

mindhealthconnect
An innovative website dedicated to providing access to trusted, relevant mental health care services, online programmes and resources.

MindSpot Clinic
1800 61 44 34
An online and telephone clinic providing free assessment and treatment services for Australian adults with anxiety or depression.

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’.

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).

Carly Findlay: A Human Being, First.

Picture of Carly Findlay and quote about the importance of doctor care that encompasses the physical and social needs of their patients

Carly Findlay is a force! I first encountered her online a few years ago and I’ve been a fan ever since. Then last year when I was doing my blog course, Carly was the invited expert for a student online chat. It was a big fangirl moment for me! I am always blown away by her generosity, insights and can-do attitude. The following words are from Carly’s bio:

“Carly Findlay is a blogger, writer, speaker and appearance activist. She challenges people’s thinking about what it’s like to have a visibly different appearance.

She’s written for many publications including The Guardian, Daily Life, The ABC, Mamamia, Frankie magazine and BlogHer. She’s uses her blog to write about her skin condition, Ichthyosis, as well as promoted causes such as Love Your Sister and Donate Life.

Most recently, Carly was named as one of Australia’s most influential women in the Australian Financial Review and Westpac 100 Women of Influence Awards for 2014. Carly received the 2010 and 2013 Yooralla Media Awards for Best Online Commentary for her body of disability focused writing. She also won the best personal blog category for Kidspot Voices of 2013, and the 2013 BUPA Health Activist award for Positive Life Change. She’s also been a finalist in the Best Australian Blogs competition in 2011, 2012 and 2014″.

May is Ichthyosis Awareness Month and Carly has been working tirelessly to organise the first meet up of Ichthyosis Patients in Australia.  You can read more about that in her Ichthyosis Awareness Month stories.

And here she is, talking about how educating doctors promotes compassionate practise.  This post first appeared on Carly’s blog, here:

Meet My PeepsOver the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears.

I think he was surprised to see me. I told him some of my achievements including how I am now educating dermatologists about my condition (something he needed when he treated me).

I grew up in a small town with one dermatologist. He had very poor bedside manner and made some terrible assumptions of the way my parents looked after me. Needless to say, I was transferred to a paediatrician very quickly!

And like many parents of children with disabilities, mine were told to prepare for the worst. I was diagnosed correctly with Ichthyosis at birth. At first they were told I would be ‘better’ in a few weeks. And then when it was apparent my condition was worsening, they were told that they were not looking after me. At seven months, I was bundled into my parents’ arms – they were told to take me home to prepare for my death. There didn’t seem to be much talk of what I could achieve with the right medical treatments and support.

And so I lived past seven months, reaching milestones in my own time. Then I surpassed seventeen months, seven years, seventeen and twenty seven. I am still here today.

That doctor did not see potential. He saw a diagnosis, a prognosis, possibly an outcast and a life to grieve over. I proved him wrong.Other people with Ichthyosis tell me that doctors didn’t give them a chance either. My friends have said that their parents were told they wouldn’t make it into mainstream school, that they wouldn’t have relationships or children, and that they would be social outcasts. These friends are university educated, in relationships and some have children. And a friend who’s a parent was told that they should be preparing for the worst after their child was born with Ichthyosis – even advised to start preparing for a funeral service. Her little girl is now six.
At Stella Young’s memorial, her close friend Bryce spoke about how the doctors told her parents to start grieving for the child that she wasn’t when she was born. They never grieved, they had not lost anything. Like my parents, they gave her the best possible life, instilling pride through being proud, never doubting her abilities. Bryce said Stella’s parents “didn’t see disaster when people around them could see little else”, and “She was the eldest daughter and sister of a family that would get on with the job of living.” They gave her the resources to succeed, a name that means star, and she outshone those doctors’ expectations

The political models of disability can determine a person’s compassion and empathy towards disability. And so a doctor’s low expectations for a baby born with a disability can set the scene for their attitude through the lifespan of that patient. Perhaps because of the medical model of disability, (where disability is viewed as a problem that belongs to the person with a disability), doctors only see a diagnosis, and not a person. They may not believe a patient with a disability is capable of being educated or empowered about their own healthcare. Yet if doctors studied the social model of disability (that the physical and attitudinal barriers are a a cause of society and can be removed), they’d have greater training and compassion for patients with disabilities.

As I’ve mentioned previously, the Washington Post featured a great piece about the low expectations of doctors on patients with disabilities.

Leana S Wren writes:

“While medical school curricula are replete with lectures on “one-in-a-million” diseases, little attention is devoted to teaching future doctors how to care for people with speech disorders or other disabilities.”

NPR raises the same issue:

“More than half of medical school deans report that their students aren’t competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don’t require clinicians to demonstrate knowledge or skills in treating patients with disabilities.

Numerous studies have found people with disabilities receive inferior health care, including less information about prevention and fewer screening tests.

Mistaken assumptions are a big reason. Doctors and nurses have expressed surprise to me when I explained that they have to discuss risks and benefits with patients who are cognitively impaired. Some doctors are also surprised to learn that they need to ask someone who has a physical disability about sexual activity.”

And the New York Times cites how little training doctors had in managing patients with disabilities. Pauline W Chen MD writes of doctors being unaware of how to manoeuvre patients in and out of wheelchairs safely and with dignity, lack of physical access to medical buildings, and the lack of disability training doctors receive. In some cases, doctors didn’t complete the medical exam on the patient because they didn’t have the correct supportive equipment nor a care plan to safely assist them.

It’s this extra care – the physical care and the social care – that is needed to empower patients. Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.

 (On a side note, sometimes I go to hospital with a non-skin related ailment. A sore throat, for example. And the doctor is so focused on my skin, sometimes marvelling at the medical miracle sitting before them, that I feel like I am a rare patient coming to life from their textbooks. Really, I just want a doctor’s certificate and a script for antibiotics.)
I went to hospital earlier this year. I was so sore, and a bit miserable. I saw a junior doctor, one I had not seen before. I spent an hour in the consult room, talking to her about Ichthyosis, but also my job, blogging, wedding plans, travel and the Australian Ichthyosis meet. She said I was the first patient she’d met with Ichthyosis and she wanted to learn more than what she’d seen in the textbook. Her supervisor came in to provide further input into my treatment. Again, we talked about life, not just Ichthyosis.And she told this junior doctor how lucky they are to have me as their educator. What a compliment.I am so lucky to feel empowered as a patient at my hospital. These doctors listen to me. They treat me as a person not a diagnosis. They see my potential and are proud of my achievements. Their compassion means I am a human being first.

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Human being first, human being, first.  Human Being, First.

Julia: ‘P’s Get Degrees

 

It’s Meet My Peeps time again!
When I was at University, back in the Nineties, we used to say “Cs get degrees”.  It was our way of reassuring ourselves that we didn’t have to ace everything to get the piece of paper we were working towards.  It is a useful sentiment for socially distracted students, but quite a necessary mindset if you are ill.   Julia lives in Melbourne.  Her tenacious efforts mean that she is getting really close to finishing her degree; not long now!  This is such a huge achievement because she has done it all juggling study with the daily challenges of Postural Orthostatic Tachycardia Syndrome.
These days, in Australia, the old fashioned C grade has been replaced with a more politically palatable ‘P’ for ‘pass’.  Hence, ‘P’s Get Degrees.  🙂 Today she is sharing with us her story and her top tips for chronically ill High School and University students.  Take it away Julia:

______________________________________________________________

With chronic illness come many sacrifices. Many people have to give up the world of study, just like others would have to give up full time work. I am one of the lucky few who, although my methods may not be conventional, has been able to continue studying while sick.

I began doing 2 or 3 subjects at a time,(3)

It all began back in year nine with the onset of chronic and complex migraines. They started as a horrible one-sided headache once every few weeks and eventually became more and more frequent and complex. By the time I entered year 11 I was experiencing episodes of dizziness and paralysis with these weekly migraines. With my final year of school approaching I remembered thinking, ‘well, it can’t get any worse than this.’ Boy, was I wrong!

It was year 12 retreat, a 3 day trip to Toolangi with half the year level. I had been feeling a bit rubbish over the holidays leading up to the school year, but had put it down to jet lag after coming back from an overseas trip. It was the afternoon session and 36 degrees Celsius. There were no fans, no air con. All of a sudden, my head was in my friend’s lap. I have no memory of how it got there, only the clamminess, mild nausea, head feeling like my brain had been replaced with helium and that familiar feeling of a migraine creeping in.

Of course, being in the middle of nowhere, calling home and getting picked up because of a migraine was not an option, so instead I was directed to have a lie down in the teacher’s cabin. I remember taking my medication and being knocked out pretty soon after. I woke to a student teacher staring at me. This was not the end of my ‘adventures’ on retreat. The next day was just as hot and I passed out again. I was given permission to go and sit in another room with a few of my friends while they waited for my mum to drive up and pick me up. After passing out again while sitting on the ground and struggling to get back up, an ambulance was called.

This was the clearest beginning on my POTS (Postural Orthostatic Tachycardia Syndrome), despite hints of it following through my life.

As you can imagine, fainting multiple times a day and feeling so unbelievably fatigued and dizzy doesn’t go to well with your final year of high school. My official attendance for that year ended up being about 50%, not to mention the classes I ended up leaving early.

My determination to finish high school was enough to keep me going. I was not going to spend another year there! I learnt early on, that teachers were always willing to help as long as you showed them you were willing to learn. Every class I missed or left early was followed up by a simple ‘copy and paste’ email asking for the stuff that I missed. Luckily mild insomnia came in handy allowing me the hours to remain mostly up to date. Most of my studying was done in bed with my laptop on my belly.

As term 3 crept up, I realised POTS was here to stay, and the difficult decision was made to drop one of my favourite (but worst) subjects, French. The head of VCE (Victorian Certificate of Education = High School Diploma equivalent) subjects was keen for me to keep the subject because of the mark up in score that came with it. The reality though was my concentration was completely shot so, concentrating in another language was never going to happen that would mean I wouldn’t even get a mark that would warrant any sort of a mark up.

It was a difficult decision, but I don’t regret it at all. My French teacher was amazing though, she understood my love for the subject and the limitations that came with being so unwell and went on to invite me back for the fun lessons like watching the Lion King in French. I never properly thanked her for everything she did for me.

Once I finally got through year 12 there was always the fear I wouldn’t get a mark that would get me into what I wanted. Luckily though, when university offers came out I got my second preference, which was a Bachelor of Science (my first preference being a Bachelor of Biomedicine). At the time I did not realise that this was a blessing in disguise. The biomedicine course was structured so much that it would actually have been quite difficult to do part time, as I have been able to do.

My first semester was a full 4-subject load and was indented by many trips to the hospital and constant rescheduling of assessments. It was from that that I learnt a full load was not for me. I began doing 2 or 3 subjects at a time, and in my worst semesters even just doing one subject.

I’m a perfectionist and wanted to get the best marks and subsequently, best average. I worked as hard as I could and quickly learnt that this was not going to happen with attendance just as bad as high school. I adapted my study skills and would only going to non-recorded classes and the ones that were recorded would be done in the comfort of my college room.

Living on campus was an absolute blessing! This allowed me to have some sort of a social life as well as maintain my study life. Friends that I met at my college have always been super understanding and I can never thank them enough for that. In fact, I would not be still studying if it wasn’t for all their support and help.

Of course, studying part time isn’t always ideal. There have been so many times where I’ve wanted to give up and just become a professional sleeper! The frustration of my situation really started to settle in when my friends started graduating. I felt like I was falling behind in life. The reality of a never seemingly ending degree would result in many tears, but eventually I’d get over it and just suck it up. Every semester I had to drop a subject would tear my heart apart, knowing that it was then going to be an extra semester, or even an extra year. 
I’m now in my final semester, and even though I am going through another rough period, that drive to finally get that piece of paper is keeping me going.

This is my advice to those of you who are studying with a chronic illness:

Don’t feel you need to finish with the people you started with, through my epically long degree I have met so many amazing people that I wouldn’t have met if I hadn’t taken so long.

Don’t be afraid to ask for help. The number of teachers, lecturers and tutors that have gone out of their way to help me has been ridiculous. I can never thank these people enough.

If you’re at university, don’t allow your own stereotypes and judgements stop you from seeking help from student services. Register, because the people are there to help you get through and do everything possible to make your time through uni as seamless as possible,

Pace yourself. This is probably my most hypocritical advice, because I fail at this one on a daily basis. Take your time, don’t be afraid to say no to things and don’t listen to people who call you ‘lazy’ or ‘not a morning person’ when you reveal how long you’ve slept in. Those sleep-ins may be the difference between quitting or getting through!

Just remember, you don’t need to get 100% on every test, P’s get degrees!

And to those who have been there for me and helped me at any point through school or university, thank you! Thank you for absolutely everything you have done for me, whether it be sharing notes, driving me places to save my ‘spoons’ from public transport, dropping work off at home, keeping me included in social activities and understanding the weird things I’ve had to do to get myself through.

-Julia

Meet My Peeps

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

header
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.

Michelle Roger: All the Feelings

Michelle was the first blogger whose work I read that wrote as if she was living inside my own brain. I found her blog before I fully understood what was wrong with me and I remember devouring post after post until I had finished reading her entire site. It’s a big blog too, Michelle’s been writing for quite some time!  Her posts were funny, irreverant, authentic and informative. I laughed myself silly, I cried, I wondered and I thought about things. She wrote about the issues no-one else seemed to talk about.  She made me want to write myself. I am beyond honoured to have Michelle guest posting on my site today.  She’s my blogging hero.  Here she is discussing the importance of being able to express even the crappiest feelings. I think this post is really important.  It originally appeared over on Michelle’s blog here.

Meet My Peeps

I’ve had a bit of an unintentional blogging break of late. My mojo has been somewhat absent and my health not exactly stellar. Sometimes it’s difficult to keep hold of that happy place no matter how much you want to or how hard you try. No amount of positive thinking works and you end up just beating yourself up for somehow doing happy wrong.

I’ve noticed there has been a move in some corners of the ether to stop discussing the negative emotional aspects of illness and in my state of funk it’s really rubbed me the wrong way. I’ve found myself moving further away from various groups which seem more intent on providing more in the way of inspiration-at-all-costs, rather than a safe place to vent and seek support or treatment information.

I’m all for inspiration, but not at the expense of silencing the patient voice. Illness sucks. At times it is hard to find anything positive to cling to. It is scary. It is challenging. It makes you want to cry uncle and hide sobbing in the corner. There is nothing wrong with these feelings. But there is something wrong with stifling those who voice those feelings or judging those who are in those dark places.

I understand not wanting to dwell in those places. That is not healthy. But ignoring them or pretending they don’t exist is even more detrimental. Already we judge ourselves more harshly than anyone else possibly could. But to hear that we are somehow doing illness wrong, is another level of guilt to bear.

Admitting these emotions is already fraught with stigma. Inspiration porn tells us that we should all be fighting the good fight. That we should face the world with a smile and a Can-Do attitude. That the sun will come out tomorrow. Turn that frown upside down. All you need is a positive attitude. We are beaten over the head with the permanently perky group-think that has been popularised by pop-psychology and smiling, big haired, over-tanned pseudo-celebrities on the covers of shelf after shelf of self-help books.

Say it’s tough and you might as well have said, “on my weekends I enjoy sacrificing small furry kittens to Beelzebub”. That is where the crazy lives. Not in the patients experiencing real emotions from living in a prolonged stressful situation. It takes courage to say it’s not okay in the face of the overwhelming positive brigade.

Say 'it's tough' and you might as well(1)

Sometimes what you need is one safe place to say it’s not okay. That you are scared. That it is all getting too hard. This is where a true support group can come to the fore. A healthy support group is a reflection of the different aspects of illness, part inspiration, part support, part venting, part information etc. We need a place to voice those thoughts and feelings free of judgement. To simply hear that someone else understands and has been there. We don’t need solutions. We don’t need to be told that we should stop being so negative. That we shouldn’t share. That we should always try to find the positive. Some days you simply can’t, AND THAT’S OKAY. We can support one another without forcing our own beliefs on others. Without expecting others to be in the exact same head space as we are.

In psychology there is a concept known as the Theory of Mind. In a nutshell, this theory suggests that we can attribute beliefs, emotions, states of mind etc to ourselves and others, and understand that other people may have beliefs, emotions and needs that are different to our own. It is this theory that allows us to have empathy for others. It means that even though others may be in a different emotional place to ourselves, we can still provide support and care for them. This theory or it’s lack, can make or break a support group.

We can support one another with a long message or even a simple emoticon, a heart or a sending of hugs. Because sometimes that is all that is needed, especially when your heart and mind are already cluttered and overwhelmed. That lets another patient know they are not alone. It lets them know they can vent and then, that they can breathe.

Positivity has it’s place. I am a positive person by nature. But it cannot be sustained 24/7 and forcing that is an added burden patients don’t need. We have a range of emotions for a reason and each have their place. We are all in different places in this illness journey and we can’t expect that everyone will be as sanguine as we are in a particular moment.

This past week I felt fear. Something I haven’t experienced in a long time. My bradycardia was the worst it’s been in….well, to be honest it was probably the worst it has ever been. I experienced all the crazy scary thoughts. I realised there was a chance that my heart could stop. That my kids could come home to find me. I was scared to be alone. Later that night when my heart rate had stabalised somewhat I realised I was over it. Really over it. I’ve been sick a long time. I’ve had enough.

There is no shame in airing those thoughts. They were a natural response to a damn scary situation. They are thoughts that I know others have had. Airing them doesn’t scare others. Or if it does it opens up an opportunity for more discussion and support. It allows others who have been sick for a longer time to share their experience. It means that should other patients have those thoughts at some point they know they are not alone or crazy. If they see support on a thread from other patients they learn ways to deal with the messy emotions that crop up with living with a complex chronic illness. They also see that we make it through. That no matter how tough it gets, there is a point where it gets better again. That today I am planning art projects and laughing at YouTube videos. The worry of last week is still there, but it is balanced against the good and put in it’s place. Today I can laugh and smile again. I made it through. Today’s emotion losses much of it’s salience if it’s not seen alongside the darkness of last week.

Living with illness is a crazy ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don’t exist or minimising another’s experience does a disservice to ourselves and to our fellow patients.

Shame and fear thrive in silence. And that’s one burden we can change.

-Michelle

I should add I am a strong supporter of seeking professional help for dealing with this aspect of chronic illness. For some, psychologists or counsellors, for others clergy, or professional support lines. Support groups fill a very valuable place in dealing with illness, but sometimes more is needed. There is no shame in seeking help for the emotional aspects of dealing with illness, just as you would seek out a cardiologist to help with heart rate issues or a neurologist for small fibre neuropathy, a psychologist can help with the emotional roller-coaster that is chronic illness.