What’s in a word?

I’ve always loved word play. So when I started this blog, playing with the ‘chronic illness’ part of my title made perfect sense. I wanted to chronicle my life, a record of my thinking for my kids, a resource for other patients, a place where I could write through all the issues I was facing. So calling my blog The Chronic-ills of Rach was fitting and mildly funny.  I think even then though, I was hopeful. I didn’t reserve that name as a domain name, preferring to use rachelfaithcox.com instead.

And life, sometimes, does beautiful things and turns in directions you never expected. I’m in remission, I’m out and about. I’m working and being an active parent. I’m enjoying all the offerings of life in well-land! And it feels quite strange to have a blog called the Chronic-ills of Rach when right now, illness is not the all-consuming factor it used to be in my life. So I have amended my blog title. I wanted to do it this way, to pay homage to the places I have been.  But I’m no good at coding and my blog theme is too locked down.   This is what my title image would have looked like if I had those skills.

the CHRONICLES

It feels like it’s time to move and grow.  The Chronic-ills of Rach will become the Chronicles of Rach, and I will continue to write here.  About the full range of things that happen in my world. Maybe that will include things about remission, maybe relapse (but I really, really hope not!) and maybe there will be more about living life on the outside after a long time living on the inside.  Maybe you’ll come with me as I traverse these new paths? I’d love you to stay.

It’s been frankly quite weird going from mostly horizontal, to a job (plus size modelling) where my work is almost all standing. What a wonderful thing to get to experience the pampering and glamour of having my hair and makeup done by someone else! I’ve been learning all sorts of new tricks about how to make the most of my outward appearance. I feel like I have stepped sideways into a different dimension, into someone else’s life. And it would be a cinch to just drift away on the ease of feeling well, to take it all for granted and live the life that others seems to lead. It’s just that I can’t. I can’t forget and, well…
I don’t want to.

For me, all this outward beauty stuff is truly delightful. It’s a treat. It’s what so many little girls dream of.  Playing dress ups for a job! But I am keenly aware of the fact that outward beauty is ephemeral. There is smoke an mirrors, there is photoshop. There are skilled artists who sculpt and paint and tease and curl. It’s all very beautiful, but it is not soul sustenance. True beauty, the beauty I care about, is soul deep. And that kind of beauty is accessible to everyone, even without a team of hair and makeup and the skills of talented photographers!  True beauty shines out from the insides. And it is only created through experience.  Through living all of life’s highs and lows.

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So, from a girl-all-at-sea, into a fast world of action and busy-ness, I stop and survey the terra-firma. I hope to keep one eye at all times on the things that matter most. People. Connection. Communication. Kindness. These things easily get lost in the cut and thrust of everyday life. Mine is a strange shift of fortunes and I want so badly not to lose the lessons that washed up with me on this shore. I will gather them. I will continue to write about the things that matter.

So, welcome to my new/old blog!  Will you be hanging around?

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.

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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!

8 Great Things you can do to Live Well with Chronic Illness.

I sat yesterday morning in the infusion centre beside a beautiful woman called Christine.

We always try to sit together when our dates coincide in the infusion room at Auckland City Hospital. She goes more regularly than I do, for her regular vials of IV Immunoglobulin.  Every fourth Monday since we first met, we’ve been sitting together while her IVIG boosts her fight against Myasthenia Gravis, and my Pulse Methylprednisolone suppresses the cause of my Pandysautonomia. She’s great company.

I am always impressed with Christine.  In the face of some truly difficult and devastating challenges, she always looks beautiful and is beautiful.  Carefully groomed, well dressed with such a warm and  lovely nature.  She always has a bag full of occupations to keep her busy.  Yet, she makes time to chat, to ask how things are.  She remembers my kid’s names and cares about what they’re up to. She works part time as an English tutor and is studying the Maori language in her spare time. She is a devoted mother and grandmother, wife, neighbour, online patient forum member, and friend to many. I honestly can’t comprehend how she manages all of those things, every day, and a severe chronic illness as well. But her example makes me want to be better at living with chronic illness. She has made me think more about all the things that we can try to do, to distract, manage, cope with and transcend chronic illnesses.  She is one of the people I look to for guidance, carefully watching how they do it. There are some incredible people out there to learn from, I bet you know some too.  You probably see one of my sources every time you look in the mirror!

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Here are the 8 of most effective ways of overcoming I have observed in the world of chronic illness.
Some strategies:

Get Right-Brainy

Knit, crochet, write, listen to music, paint, sew, create, play an instrument, make, or do whatever it is you can do within your ability. Remember the complete satisfaction of creativity? It’s transformative, distracting, wonderful.  Listen to creative people talking about their creativity. Invite creative people over to teach you techniques. Watch YouTube tutorials. Do some online courses. Search for ideas. If you can, attend cultural events, musical recitals, the ballet, a musical, a movie festival, poetry reading, gallery or museum.  If you can’t, visit them online.

 

Source: http://meetmeatmikes.com/craft-saves-the-day/
Used with the generous permission of Pip Lincolne: http://meetmeatmikes.com/craft-saves-the-day/

Get Involved

Participate in the initiatives and events being organised by your patient groups on facebook and elsewhere.  Get to know others. There is so much soul-food in the solidarity of people who have travelled the same paths as you. Engage with them. Help fundraise for research. Get the word out in whatever ways are available to you. Post, and comment in patient forums. Ask questions, help out with the knowledge you have gained on your journey already. Finding your tribe is so good for you.  So affirming.  And there are always avenues to be proactive about the circumstances chronic illness has given you. Being an involved member of society is a wonderful way to begin to overcome.

Get Ready

I have spent days that became weeks that became years, living in old jeans, t-shirts and sweat tops, or staying my PJs. It made me feel even more grey and unattractive.  If you can manage it, find a position that works for you near a mirror and put on some makeup. Brush your hair and find something nice to wear, even if it is simply a favourite scarf. Sometimes, getting ready for the day, even if it is likely to be the same as yesterday, makes you feel a little brighter.  I don’t understand the psychology of that, but it just somehow seems to work. When my Mum was battling ovarian cancer, she spent some time with the good people of the ‘Look Good, Feel Better’ Foundation. She came back armed with bags of goodies, a stunning make up look they had helped her to create and new ways of styling her headwear. She walked taller, smiled more and reported more energy when her lippy was on. It’s a kind of magic for the self esteem, somehow.  A lesson I need to remember more often.

It changes how you see yourself, which

Get Outdoors or Bring it In

Even if getting out takes enormous scheduling, incredible effort and results in days of payback, try to get out when you can. Try to make it into the outdoors to look at the beauty of that sky, to breathe in that fresh air and feel a breeze on your cheek.   Even rain feels incredible when you have been stuck inside for too long. I have never felt so amazing as when I floated in the warm sea on my back, blue sky above and white sand below. It’s so therapeutic. We are born for nature.  If you are bed-bound, see if someone can bring you something beautiful from outside from time to time. My kids have always been so lovely with this. A cicada shell, a posy of autumn flowers, a droopy dandelion seed head with all the wishes, wished.  Treasures from outside to hold and to take your mind out there. Maybe you miss seeing all that beauty for yourself and it’s impossible.  Take a look at my photo series from Be Couper: How to Just Be.  She has generously shared some of her stunning photography for my readers to lose themselves in, when nature needs to come to you.

Be Couper Yellow Skies

Transport Yourself

Reading, listening to audio books and watching television series or movies will take you places!  Overcome your reality with a healthy dose of fiction. It’s brilliant to vicariously live the experiences you can’t easily have. Audio books are particularly helpful because you don’t have to lift the book or strain your eyes.  Libraries usually have a good stock that you can order. Sometimes even online!  The Book Depository has free worldwide shipping and a staggering range of titles if you prefer to buy. When I really want to get outside of myself, I call a close friend or family member overseas and indulge in a long chat. Imagining the things they tell me about, where they are, how it looks, how it feels. It’s armchair travel with the joy of connection. Bliss.

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Laugh

…because laughing raises your endorphins and happy hormones can’t help but leave you, happy!  Watch the comedy channel. Listen to children talking amongst themselves or playing games. Be silly.  Pull faces and do funny accents. We have a dress-up box and nothing makes the kids giggle so much as coming home to find mummy in an odd wig. Wear crazy things, if that is your thing. Listen to podcasts from clever comedy writers. Read funny blogs. Let your children choose your clothes for a day. Google jokes on subjects that you find funny.  Tell them to people. Recall funny memories and tell them to the kids. Friends.  The nurse.  And when you laugh, make it big!  Breathe deeper, laugh louder, linger longer on the funny bit. It’s good for you.

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Give

Chronic Illness teaches us so much.  We often would rather skip the lesson, thanks. But we get it. And consequently, we ‘get’ a lot about life; about what is important. About how to truly love. About patience, compromise, honesty and communication. Be generous with that hard-fought wisdom. Be a good listener. Do you have a talent or skill that you can offer?  A wonderful person I know is severely debilitated by her illness. She volunteered to cut up blankets for the SPCA.  Because she could do that.
Do the household tasks around you that are achievable. Fold those clothes.  Chop the veggies in your bedroom or set-up on the kitchen floor.  Whatever works for you. Maybe there is something else you can think of that you could do for someone? Find ways to tell people how much you appreciate them.  Because being generous is one of the ways that human beings become happy.  If you can’t give of your energy; you can give of your heart.

Find ways to tell people how much you

Find Your Thing

All of these strategies are things I have observed in people I admire with chronic illness.  Some of them work for me too. But for me, the greatest of all is writing. It is my favourite overcoming tool. Writing a blog is a focused habit of writing that I use as my therapy, my release, my way to help, my journey to memory, my connection with my community. If you would like to try blogging too, I recommend it. It can open doors you might never imagine. Being part of the blogging community has also introduced me to some of my favourite regular blog reads. It has given me a format for my research and learning around Dysautonomia and an avenue for meeting people I may never have met if I hadn’t begun to write. I can’t thank Kylie at Rainbows and Clover enough for starting me back at the keyboard, or my fellow Dysautonomiac, Michelle Roger, for sparking this blog by doing such a rad job of her own. And of course… Pip Lincolne for teaching me how to make it happen! I hope that someone else out there might find the spark too.  It’s helping me overcome, every day.  Ask me about it!  I have an online course recommendation! 😉

Whatever methods you employ, don’t give up. There are always, ways to overcome.

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Have I missed some good ones?
How do you distract yourself from the daily realities of chronic illness?

…and Christine? You are doing brilliantly. Thankyou for being such a stoic, thoroughly great person to infuse and enthuse with. Kia Kaha.  Stand Tall.

NB. to my shame, this one of the only Maori phrases I know, but it is useful and pertinent for a girl like me, I use it all the time!

 

Q and A

Last month, I had to deliver a ten minute talk …about me.  My story.  It was part of the block weekend for the Leadership Programme I am doing.  The programme is about leadership in social change and it is challenging my thinking in lots of ways. I really prefer writing to talking (I know some of you will find that hard to believe!) and speech making isn’t really my cuppa tea.    But I started doodling, as you do. I doodled lots of question marks.  And then I made a real cuppa.

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When I returned to my doodles, I stared at those question marks for a long time.  And it occurred to me that the best way to tell my story, was to do it using the defining questions of my life. There have been so many things I have wondered, but I pared them down to the bare minimum.
So! Here is what I came up with.

My Life, in Fourteen Questions:

I am a kiwi girl, born just after my parents completed bible college in Australia. My parents felt moved to work on the mission field in a third world country. So I was raised in Papua New Guinea, then I went to boarding school in Australia and soon after that, they went to China. These were the locations of my upbringing. In total, I attended 13 schools, four tertiary institutions and eventually moved back to New Zealand when I was 23 years old.

There were lots of things about my childhood that made me think.  And one of the first big questions I remember thinking, was:

"What makes us think our religion is more right than theirs?"

I liked to think about things as a kid.  And I started to notice other odd things about our world.  I noticed that when I was at the international school in PNG, there were more than forty nationalities of kids and everyone played together. Where we were from wasn’t even a factor in the forging of friendships.  But when I went home to New Zealand on furlough, people teased me for coming from a place where the women wore grass skirts and showed their boobs.
I was an outsider in my own country.
I began to think,

"Why do people have to be the same to be accepted?"

In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:

“What is the origin of thought?” “Are we inherently good… or evil?” “Is all this real, or just a figment of my imagination?” “Is life governed by fate, or are we self determined?” “Why are we here?” (and you kids from the seventies and eighties will relate to this one) 
“Are they gonna drop the bomb, or not?”
But these deep questions were all overwhelmed by a far more pressing issue:

“How do you pash?”

(Note to teenage self:  Mum’s historial romance novels were not the place to search for this information.  “She explored his mouth with her tongue” was a stylistic interpretation, not an instruction).

By this time, I’d been given the nickname Falling Tree because I was fainting a lot.
No… not because of boys (but there was plenty of swooning, too… I’m looking at you Morten Harket)!  I made it through my final year of high school and got into a competitive Journalism degree at a Sydney University.  I was ecstatic!

My well meaning Dad thought journalism would corrupt me, so I wasn’t allowed to do that course.  But a year later, when I reframed my University ambitions to encompass a career path ‘better suited for a woman’ I was allowed to go.  I embarked on a degree in Education and Teacher Librarianship.  Instead of writing words, I planned to surround myself with them.
But I wondered,

"Why does being a girl have anything to do with it?"

It took me seven years to get that degree (it was a bit boring).  Across that decade, I moved countries, got married, and divorced, and valiantly embarked on Project: Find a compatible Handsome Prince. There were quite a lot of frogs to kiss, so I used my knowledge of pashing with great determination.  Surely one of those frogs would be him…?!  And all of a sudden three wonderful things happened in a short space of time.  I found my man, we bought our first house and had Bee and Little Zed. All my dreams were coming true.

Then one day I got the flu, and I never recovered. Can you imagine that?  I was constantly dizzy and fainting a lot. But the faints were actually my heart stopping. I was fitted with a pacemaker to keep me ticking.

I asked a lot of questions during those early days of sickness, but the biggest one was

"How Long will this Last?"

No one knew.   Other parts of me starting going wrong: digestion, bladder and bowel function, temperature regulation, cognitive function, I couldn’t sweat properly, my pupils were not reacting properly to light, I had constant nausea and dizziness every time I moved to stand.  My blood pressure and heart rate were all over the place. I began to experience burning, tingling and numbness in my hands and feet, I struggled through daily chores. I had to quit teaching and we had to take in home stay students to cover my loss of income. The fatigue swamped me. My gait and mobility started to change. Every day was an exercise in pushing through. Pacing. Planning ahead.

I ended up in front of a neurologist who explained that I have a progressive form of autonomic nervous system dysfunction called Pan-dys-autonomia.  That covers all the automatic things your body does.  I know some of you here might relate to that. What made my problem odd was that I had it without a primary diagnosis. Dysautonomia is common in late stage MS and Parkinsons, aspects of autonomic dysfunction affect people with spinal cord injury too.  But the cause of mine was elusive. Six years of watching the progression, endless tests, treating the symptoms and fearing the decline and fall of my future led me to this desperate question:

“Can’t something be done?”

That question was met with averted eyes and shaking heads. Do what you can with your family now, I was told. Before you can’t anymore. I didn’t like that scenario. We embarked on a proactive memory-making schedule. A family holiday, the prioritising of togetherness. And I researched. My research led me to other patients overseas.  I listened to their stories, finally finding people who understood. I began to think deeply about the issues that face people like me.  People with ‘invisible’ illnesses, disability and accessibility issues that aren’t immediately evident. People with rare diseases or poorly understood diagnoses. I wanted to know what could be done for them, too. The injustices of all those lives lived beneath the radar began to burn my brain.
It led to this question:

“What can I do?”

I was offered some work writing for an overseas blog. And I remembered that I like to write.  So I started to write for more people, and even for myself. Blogging led me to ask many more questions, but for the first time I was beginning to see that it was leading me to answers too.  About me, about my purpose, and the beautiful, simple idea, that I could do what I do best.
I could write about it!

One day, I found a Youtube video by a specialist overseas who was treating patients like me, and getting results.  My general physician didn’t want to know. So I pushed and I fought and I learned to use my voice with sometimes, quite intimidating doctors! I kept writing for The Invisible and they began to respond. I wrote for me and began to take action. Until finally, I found a specialist who had read the same papers as me, who had seen the same video. He started me on a new treatment regime in January and it is so far looking really promising.
Fingers crossed!

And here I am, feeling better than I have in six years, embarking on the Be.Leadership Programme, and wondering

“Where will this lead?"

I know first hand that while we are all, to some degree,
defined by what our bodies can do and not do;
more powerfully, we are defined by
what we think,
by how we feel,
and by what we can do about that.

I think we have a responsibility to
help people understand
that our common humanity
is bigger than religion,
it is deeper than culture or race,
it is more practical than philosophy,
it’s broader than gender
and more timeless than life spans,
it’s our world’s biggest learning challenge
and it even transcends our physical abilities.

Those questions of mine have taken forty years to percolate. And I am just beginning to understand that they all point to the same thing.
That we, at the heart of things, have more in common than we don’t.

I am so grateful to have found an authentic way to connect my heart for social change, to society.

“How did I get so lucky, to have my heart awakened
to others and their suffering?”

Pema Chodron

Q and A
Q and A
Questions and Answers

No Harm

Four years ago, in a neurology outpatient’s waiting room, somewhere in the southern hemisphere…

I’m your eighth patient today, here in this clinic.  Before that, you were doing ward rounds with your students, you’ve barely had time for lunch.  I don’t know this for fact, but I know you’ve seen a lot of patients from the slump in your shoulders, the way you don’t look up when I am too slow to follow directly behind you into your space.  You finish reading something on your computer, maybe it’s my record. You push your keyboard away, sigh and swing your gaze towards me. It rests on me for a nano second.  Then it flits to somewhere over my left ear. Your brain is busy, I can see that. Who knows what thoughts are travelling through your mind?  Not me. But I try to guess, trying to read your body language; trying to find the right way to talk to you based on the incomplete information in front of me.  My first instinct is to apologise to you, for making your day busier.  I give myself an internal faceslap. Your time is valuable, it’s true.  Mine has no monetary value.  The numbers a neurologist like you can earn are a reflection of your worth. But that thought doesn’t seem to cheer you.  You rub your temples and say:
“Exactly why is it you are seeing me!? You POTS people don’t need a team of physicians, you know.  A cardiologist should suffice.”

I’ve been waiting a long time to see you.  Hoping that seeing you is going to make a difference.  I hear you have a brilliant mind, that you might be able to help me. Waiting for this appointment has kept me going.  I know that my medical history is long. I know that the things that have been going wrong for me don’t seem to add up.  I know that I bring my burden of hope and lay it at your feet.  And I see that you don’t want it.  I wish I could have brought you in a cup of tea.  Might you have smiled if I had?  Might you have seen who I am, beneath the data on your screen?

“I am sorry,” I say, my voice barely audible.  “I have a neurological condition and I am seeing you because you are a neurologist”.

If you are taken aback by my response, you don’t show it. Your head swivels back toward your screen. “Tell me more” you intone.  So I do.  I tell you my symptoms as succinctly as I can while you scan through my notes. “hmmmm” and “yes, I see” and “ah”. The nods as we cover each autonomic oddity. You do a neurological exam.  We sit down again. When you look at me, it is as if you are seeing a puzzle. You’re analysing the information you have gathered. You are searching for the placement and order of the pieces so you can see the whole. The pieces suddenly slot into place.  Satisfied, you rock back on your chair. Your next sentence is certain and clipped.

“You don’t have POTS”.

Do I suppose, at that moment, that a cardiologist might not suffice after all? I look at you, wondering what is coming next.  But I am not surprised.  I never really felt like POTS was the whole story, it just didn’t fully explain everything. So I wait for your view of things.

“You have Pandysautonomia.  Pan means ‘all’ and Dysautonomia, well you know what that means, a dysfunction of your autonomic nervous system.  It can’t be auto-immune, because your blood tests are normal*. It appears to be progressive. You’ll be happy to know that breathing is usually the last thing to be affected.  You’ll continue to decline, and then, eventually…”   You don’t say the next part.  You tell me to go an do the things with my family that I need to do while I am still able. Then, you clear your throat, raise your eyebrows and meet my eyes, properly. You push your chair backwards and explain that you have no need to see me again, you’ll send a letter to my General Physician.

You stand, and as I look up, you ask,
“-any questions?”  
and I see that I am dismissed. My inner roar of frustration is silenced, replaced with a whimper as I survey the decline and fall of my future. The small feral creatures of uncertainty that populate my mind have grown into monsters in a few of your short sentences.  I stand, thank you for your time and leave your rooms.

I sink into one of the waiting room chairs.  I am shaking from the effort of holding myself upright throughout the appointment. I’m devastated. I thought you might tell me that all I needed to do was x or y.  I was even prepared to try z. The stress of the interaction has sent adrenalin coursing through my blood stream.  I feel the usual battery of autonomic warning signs.  I wait it all out, half reclined, embarassed, listening to the hammering of my pulse between breaths. I am suspended there, in the waiting room I am desperate to escape from. I think about how you must not know how terrifying you are.  How scary your words. How easily you could have reassured me.

You are already seeing your next patient. The waiting room is so full of people.  I wonder how many of them are for you.  I wonder when you will get your cup of tea.  When you will get to escape from the burdens that crowd your clinic rooms. I wonder what you are thinking as you face that ninth patient.  And I wonder if you really love what you do anymore.

So yes, I am sorry.  I’m sorry you are busy. That the Medical Profession isn’t what it used to be. I’m sorry to be one of the many who demand yet another slice of your mental gifts, your time, your attention.  I’m sorry that you have lost, or maybe never had, the ability to connect with the person sitting in that chair across from you.  Your intellect is a beautiful gift. A valuable gift. Your education and years of training have positioned you to make a living from that intellect.  And just as any person (making a living in a service role) needs to have interpersonal skills; so do you.  If a McDonald’s cashier can afford me a smile on minimum wage, I kind of think you should be able to manage one. I’m sorry to be the one to tell you that, because I don’t think anyone else ever has, or maybe, no one since Med School. I wish I had been strong enough to tell you when I was in your rooms.

Take a break, doctor. Make some changes to your schedule. Fix the system, if it is the system that traps you in such misery. Take a look at the person behind the records, and the person in your mirror.  Both are beautiful, complex, intricate human beings. Try a small smile, a minute’s reprieve from your analysis and timeframes.  And if what ails you is exhaustion, it might be good to remember that you are not Atlas.  You shouldn’t need to shoulder the planet alone. A holiday might make all the difference, you could take one.

Remember that the words you tell your patients are always significant to them. But the things you tell them with your body language speak louder than anything you say in words. And if it all carries on this way, you are not only hurting your patients with your brusque and bullish manner, you are denying yourself one of the greatest joys of medicine. That magical interplay between doctor and patient, when your skills and their need combine to create a job well done.

It’s great to have a masterful intellect. But, did you forget?

First, do no harm.

*general auto-immune screening won’t necessarily show the antibodies implicated in autonomic dysfunction.

Future doctor_pateient(1)

__________________________________________________________

It’s a long time since that appointment. I write about it now, because I spent four years believing, yet fighting, what I was told. That I was on a progressive trajectory, that I would decline towards the ultimate end, that I should do what I want to with my family while I still can.  That is a pretty harmful idea to live with. Or a helpful one, depending on your perspective.  But it is certainly painful.

I’ve since had a much, much better appointment with the same neuro. I don’t hold a grudge anymore about that first appointment, but I think it is illustrative of the difficulties faced by chronically ill patients being seen through the hospital outpatient system. And also of the difficulties facing our chronically stressed doctors. Our bodies may be sick, but their system is also sick. My subsequent search for more answers to all my questions, eventually led me to an immunologist.  My response to immuno-suppression indicates that my problem is indeed auto-immune, and absolutely able to be treated with immune modulation therapy.  I don’t expect my neurologist to have known about auto-immune autonomic antibodies.  But I did expect him to be compassionate and want to help.  Perhaps to do some research with that clever brain of his. Or phone a friend!

What I am saying is that I would like to see a future where doctors understand that they have a wonderful opportunity to limit the harm their patient’s endure, simply by being nice.  I believe that Hippocrates was not only talking about physical harm in his oath “First, do no harm”.  I’d like to see a future where kind doctors are recognised and rewarded for the extra efforts they make with their patient interactions.  And where hospital systems improve the working conditions of all their health workers, including doctors and specialists.  And maybe, one where girls like me; the apologising kind, find the strength to say their piece when they should.

Have you had an interaction with a specialist like the one I talk about, above?  I’d love to hear about it.
Do you think something can be done about the pressures facing doctors in our modern medical systems?

O Frabjous Day!

Callooh!  Callay!  He chortled in his joy!

O Frabjous Day. Illustration by Mike Amend source: http://www.elfwood.com/u/mykeamend/image/d7957840-270e-11e4-9ecf-d547aae57bd2/o-frabjous-day
O Frabjous Day.
Illustration by Mike Amend
source: http://www.elfwood.com/u/mykeamend/image/d7957840-270e-11e4-9ecf-d547aae57bd2/o-frabjous-day

___________________________________________________________________

A week ago, I had my first Methylprednisolone infusion. It’s been an interesting week!
It’s as if, last Monday, someone beamed me up, out of the foggy, high gravity atmosphere of planet Pandysautonomia and re-homed me somewhere different.  Somewhere the air is clear and the sun is shining.  I must actually be a native of this new planet, because I feel so good here.  Like all of nature was built for my body’s needs.  The air, the water, the food, the beauty.  It feels like I’ve been here before, it feels right.  Have I slain the beast?  Is it possible that this could be the beginning of the end?

I was so hopeful I would respond to steroids, because that bodes well for my panDysautonomia to have an auto-immune origin.  I was also a little fearful that my high hopes would make me want to be well so bad that I would somatise wellness (is that possible?).  But there is no doubt in my mind that what I am experiencing is real.  I feel better.  SO much better.  I have been DOING things!  Supermarket shopping without having to stop and sit!  Walking my son to swimming, and back again, without my cane!  Strolling around Bunnings with my family! Taking the kids to the beach, without my hubster! Helping out with household tasks!  I know that is a lot of exclamation marks, but if you were me, you’d be full of superlative expression too!

Every now and then, I catch my hubster’s eye and the tears well up, for both of us. There is no joy like being able to help, to be part of things, to be effective.  I am marvelling at my body.  Wiggling my hips and jiggling to the beat. To dance!  It is sublime. And, just now, I mounted our stairs.  This is something that I have done with difficulty every single time since we moved in six years ago.  The bannister has been my help; I heave myself up with my arms and my legs, pausing to rest along the way. But just now?  I skipped up the inside of the stairwell,  no bannister for support, no pausing.  I made it the whole way, body upright, under my own steam!

Feeling like this, is frabjous news!

Feeling like this makes me realise anew, just how incredibly awful I felt before.

And it horrifies me that there are people feeling like I have felt for the past six years.  Millions of them. Feeling like that and facing life regardless. Feeling like they are swimming through concrete as they fight for wakefulness each morning.  Like their heads are fashioned not of blood and bone and brain, but stone.  Like their will is too weak to force their legs to stand, to force their faces to smile, to force themselves again and again simply to do the smallest of tasks.  It terrifies me that I might feel that way again myself.  I try not to dwell on that.  If this is temporary, then I am making the most of it!  If it is a sign of better things to come; wahoooo!

One of the big changes for me is that my pelvic and hip pain has disappeared.  I’d had x-rays just before Christmas, in case the pain I was experiencing was due to a structural problem.  They were all clear.  So our conclusion was that the old nerve pain from my previous surgery was back.  It crept in a year ago, stealing a spot along my synapses and shouting out orders.  Radiating down my leg and so insistent that I often couldn’t get to sleep.  I carefully limited how often I took painkillers because I hate to rely on them. I knew I was in pain, but I didn’t realise how debilitating the pain was.  It subversively stole my objectivity and didn’t stop until it had a good portion of my mobility, too.  Last Monday, when the immunologist asked me for a state of play before my infusion, she wanted to know where I would rate that pain on a scale of ten.  Ten being worst.  I rated it at 4.   Now that it is gone I can see how very much higher I should have rated it.  That pain dictated so much about my sense of wellbeing, but I’ve been so long without the perspective of being pain-free, I had no idea how bad it was.  In hindsight, I’d call that pain a 7.  At it’s worst, a 9.   And without it the smiles keep stretching slowly across my face.  How much easier it is to be happy when you are pain free.

Other things I have noticed that make me happy:

  • less dizziness (YES!  six years of being dizzy every time you move wears you down)
  • better temperature regulation
  • better perfusion in my feet and hands, less numbness and prickly pins and needles.
  • Easier digestion (the post prandial bloating still happens, but it is resolving itself faster)
  • more sweating at the right times (like when I am hot) and in places that haven’t sweated for a while.
  • less dry eyes and mouth
  • no nausea (win!)
  • I can walk for more than ten minutes
  • More energy
  • I am craving sweet foods less (I think this is because I have more energy)
  • Less of the regular sore throats

 

On the down side I have noticed

  • higher heart rates
  • higher blood pressure
  • problems with my eyesight
  • no significant improvement with my bladder or bowel
  • I tire quickly and need to take naps still
  • my medications might be a bit much for me now

 

When I was a little girl, one of my favourite poems was The Jabberwocky, by Lewis Carroll.  I loved it so much that I memorised it.  The nonsense words made so much sense to me and ever since, I have found ‘frabjous’ to be the perfect way to describe a great day.  It’s so good to be able to write that I have had a great day.  It’s so strange to be able to tell you that this great day has followed others!    Here’s to more frabjosity. Goodness knows we all need more of that.

And if you are reading this and you are still stuck on that planet that sucks the life force from your bones, take heart.  If a frabjous day can happen for me, there is no reason it can’t happen for you too.  Hang in there, keep pushing, keep looking, keep trying. Sometimes, it is a long time the manxome foe we fight. Take hold of your vorpal sword and advance!

JABBERWOCKY

Lewis Carroll

(from Through the Looking-Glass and What Alice Found There, 1872)

`Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.

“Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!”

He took his vorpal sword in hand:
Long time the manxome foe he sought —
So rested he by the Tumtum tree,
And stood awhile in thought.

And, as in uffish thought he stood,
The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
And burbled as it came!

One, two! One, two! And through and through
The vorpal blade went snicker-snack!
He left it dead, and with its head
He went galumphing back.

“And, has thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!’
He chortled in his joy.

`Twas brillig, and the slithy toves
Did gyre and gimble in the wabe;
All mimsy were the borogroves;
And the mome raths outgrabe.

 

 

 

It’s a Damn Shame

 

source
source

 

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

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

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

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

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

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

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

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

A Medical Menagerie

 

This may be of interest to you if you also have Dysautonomia, Pandysautonomia or Seronegative Autoimmune Autonomic Ganglionopathy, or if you know someone who does.  If neither of those apply, please don’t feel obliged to read through.
I record below all of my medical weirdnesses because I know that people will find recognition here. I took a lot of comfort from learning that there were others like me when I first heard my diagnosis.  I have recorded all my symptoms because sometimes, something small can be a clue.  I am looking for answers and you might be too.

nb_-i-keep-this-list-here-for-others-looking-into-their-own-condition-i-am-now-well-but-what-you-see-below-is-how-things-were-for-me-before-i-went-into-remission

 

Screen Shot 2014-05-26 at 3.53.39 pm

Symptoms From Top to Toe:

Screen Shot 2014-05-26 at 4.32.54 pm‘Cognitive Fog’; memory issues, variable ability to concentrate, dizziness.
 These challenge my very identity.  I was smart and now thinking is much harder for me. Sometimes I sound like I’ve lost my marbles, my words get jumbled and my memory scrambled.  It’s distressing.  If I sound weird when I talk to you, it’s not that I am stupid.  I am just struggling.

Screen Shot 2014-05-26 at 4.32.54 pmI have trouble with vision sometimes, my eyes go into focal spasm.  My pupils are not always equal in size and sometimes they don’t adjust to the light properly.  My eyes are often dry.  Other times they stream and people think I am crying.  But it’s just my Dysautonomia (as moved as I am by whatever it was you just said)!

Screen Shot 2014-05-26 at 4.32.54 pmDizziness when I have a postural change has been my reality since I was eight. Sometimes I am dizzy even lying in bed and it feels like someone is slowly tilting my bed backwards in a full circle. It feels a bit like being in a raft on the ocean and I feel like I am going to fall off. Or I have a kind of up-and-down dizziness when I am just standing (like I’m bouncing internally), or presyncope when I bend over, or stand from squatting. My dizziness makes me feel unsteady on my feet and I bang into walls and doorframes. I always have to steady myself against something if I have to stand. I use a ‘shooting stick’ cane that has a seat so that if I need to sit quickly, I can. I can also use it to prop myself up.  Descending stairs is terrifying. Dizziness is never something you get used to. You learn to breathe through it, but your body always feels stressed during a dizzy episode.

Screen Shot 2014-05-26 at 4.32.54 pmThe inside of my mouth feels like after you’ve taken a big mouthful of hot soup.  That burnt tongue feeling? It is sometimes tender, dry and my gums are red and sore.

Screen Shot 2014-05-26 at 4.32.54 pmHeart issues are part of my scenery, managed mostly by my wonderful pacemaker.  I don’t take cardiac medicines anymore.  My heart rate ranges from the early thirties to the mid two hundreds. If my heart rate drops rapidly, my pacemaker kicks in.  I have had thousands of rate drop episodes since my pacemaker was inserted. I am grateful for it every day. My blood pressure can be very low, or very high, or somewhere in between.

Screen Shot 2014-05-26 at 4.32.54 pmMy stomach, digestive tract and bowel can miss important nerve messages that make them work.  This can result in a ‘pseudo obstruction’.  First, I get ‘post prandial bloating’; my tummy distends like a ten-month pregnancy.  Then, all tummy services are suspended  (so much for never having to be pregnant again)!  These days I wear forgiving clothes and I frequently get asked if I am expecting. When it is extremely bad, I make the trudge back in to hospital. It’s hideous; but my new normal is a bowel that doesn’t work without extreme inducement. I take ten various doses of laxative a day and also self administer enemas.  I hate this symptom most of all.

Screen Shot 2014-05-26 at 4.32.54 pmI am nauseous on and off all day and especially at night.  This is a side-effect of the medications which  produce peristalsis (intestinal squeezing).

Screen Shot 2014-05-26 at 4.32.54 pmMy bladder either retains urine and have to self-catheterise, or I am incontinent.  I have detrusor dysfunction, so emptying my bladder fully is tricky. Sometimes for brief and lovely periods, the pendulum passes through the middle of the arc and my bladder behaves like it used to.

Screen Shot 2014-05-26 at 4.32.54 pmMy body doesn’t regulate temperature properly.  Some parts of my body can’t sweat anymore, so other parts of my body overcompensate.  I struggle greatly with heat.  I don’t know how to dress for the conditions because my experience of them is not accurate.  In the past, I often over-dressed or under-dressed my children.  Now they are old enough to let me know if they need thermals and a jacket.  For me, it is always layers so I can try to manually adjust things from the outside in.

Screen Shot 2014-05-26 at 4.32.54 pmI get fasiculations in my muscles, in random places all over my body, sometimes these go on for a long time, other times it is just for minutes.  Sometimes, they are not there at all.

Screen Shot 2014-05-26 at 4.32.54 pmMy leg muscles are weak, so standing up from a seated position is hard.  I struggle going up and down stairs or uphill.  My left leg often burns.  I’ve been told this is nerve pain.  Sometimes I have a strange gait, it is tricky at these times to lift my feet properly.

Screen Shot 2014-05-26 at 4.32.54 pmI have pins and needles and burning sensations in my feet and hands, known as peripheral neuropathy.  We found an excellent medication for this, but now I only take it when it is extreme because the medication made my brain fuzzier.

Screen Shot 2014-05-26 at 4.32.54 pmI live with fatigue. It stands to reason that my body is tired.

 

Medications and Treatment (pre-Immune Suppression)

The general approach with Dysautonomias, is to treat the symptoms. So for everything you see above, there is something I take or do to try and help it.

 

Screen Shot 2014-05-26 at 3.40.06 pm

  1. I take Mestinon, Domperidone and Cyclizine 4x day.
  2. I take Solificenate Succinate, Gabapentin and (a list too long to be bothered recording) of laxatives on an as-needs basis.
  3. I use intermittent self-catheterisation and enemas as necessary.
  4. I also have, and highly rate, osteopathy (thank you Glyn, you are a genius!)
  5. I have iron infusions when my iron gets too low from malabsorption (these are also genius).
  6. I am currently seeing some immunologists who think it is probable that I have sero-negative Auto-immune Autonomic Ganglionopathy.  Pulse IV steroids point to an auto-immune aetiology, so moving forward I may trial other immune modulation therapies.

I rely on my husband, my kids and my friends for help, encouragement and support.  I don’t like to ask, I don’t like to receive, but I am learning how.

Still with me?  You are amazing!  Thanks for sticking around!