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?

Rehab

I have been having a battle this year.  Increased time in my bed coupled with a strange kind of pelvic/hip/leg pain have meant my mobility is significantly reduced.  Intestinal Dysmotility complicates things further.  You can read about the battle here.  Like most things, I have been tackling it at snail’s pace.  There’s the problem of having a cast-iron appetite (seriously.  I don’t know why that is.  I spend most of every day nauseated but my love for food even surpasses that!) And then there is the issue of dizzyness when I am upright.  I spend my upright time on the essentials related to my kids and family.  It’s exhausting.  Riding my bike, which was possible even last summer, is out of reach for me now.

I saw my local doctor last week.  She was concerned about the way things are. More time in bed means less time weight bearing.  That means lower bone density and muscle wastage, further reducing mobility.  Less time moving means even my significantly reduced food intake, is still providing me with too many calories for my metabolism to burn off.  It’s a travesty that these tapping fingers can’t be my exercise, they work hard enough for all of me!  Except, apparently, that’s not an effective method.  So I need exercise that I can DO, for my whole body.  Recumbent preferably. Designed for me and for my specific needs.  My doctor suggested our local Rehabilitation Trust.

So yesterday I had a brilliant chat with Lynette.  She’s a clinical physiotherapist there.  Next week she is going to meet me in their gymnasium to do an assessment. We are going to come up with a plan.  I am already impressed with her.  I told her I had problems with my autonomic nervous system and she said “hydrotherapy might not be an option for you then.  Is temperature an issue?”  Oh my!  I love a professional who knows about the autonomic nervous system!

I’m cautiously optimistic!  Watch this space.  🙂

I thought it would be cute to put Amy Winehouse’s ‘Tryin’ to make me go to Rehab” song on this post. So I searched You Tube.  And this band Rehab popped up.  I clicked on a few of their songs and I was struck by the amazing variations of their lead singer’s voice, he can go from gravelly jazz tones right into sweet angel.  What a beautiful voice. The lyrics are all about drug and alcohol addiction.  Mercifully, drugs and alcohol aren’t my problem.  But listening to this song reminded me of times in my life when I have been dealing with addiction in people I love.  It’s a brilliant song.  So even though it’s got nothing to do with the type of rehab I’ve been talking about, I’m posting it.  I am a big believer that I should pay attention to what ‘pops up’ in my life.  So maybe, this song is for you or someone you love.
A little bit of random musical kismet.

Rehab:  I Can’t Catch Up To You.

 

Raise your Wrist for Dysautonomia Awareness

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Down in this part of the world, research that will help people with Dysautonomia isn’t heard about that often.  But it is happening.  At the Baker IDI Institute in Melbourne (they’re the people who helped the Yellow Wiggle with his Orthostatic Intolerance) there is research going on which could benefit fainters. So many Dysautonomiacs struggle with fainting. That’s is a big feature of our symptoms. And researchers struggle to attract funding. That’s a big feature of the competitive research dollar. Michelle Roger from the famous “Living with Bob” blog has a fundraising initiative already running.  It is my charity of choice, especially this month.  Interested in making it yours?

For Dysautonomia Awareness Month I have been pondering how to encourage people to donate.

My sister has been visiting, and while she was here, I had an idea.  I had already bought some Dysautonomia Awareness bracelets from the States.  They’re super cute. My plan was to price them higher than their cost price, sell them on my facebook page and donate all proceeds to the fund I have talked about above.  But could I do something differently? In a happy coincidence, my sister is a beadwork artist.  I was watching her deftly do her thing while she was here and I thought… maybe we could make something a bit more unique?   I talked to her about it and she agreed to donate her time and beads (thanks Trissy!).  Then I designed this baby and she made it. So pretty.  The clasp is the shape of a heart.  How appropriate!

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It was fun to watch it come together!  So I decided to try designing another bracelet, this time stringing the beads myself.  Ta da!  See the little spoon charms and the blue awareness ribbon on the bracelets?  A token for all the  blues… a special Dysautonomia reminder.

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While I was painstakingly stringing seed beads for that one, she whipped up these two.

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And then there are these:

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All of them are unique.  Even the plain awareness bracelets have been tweaked (I enamel painted the awareness ribbon charms to turn them blue!)

All of them sing BLUES OF MANY HUES, which is my take on our awareness colour.  You may be aware that our colour is in debate at present, it’s somewhere between mid-blue and turquoise.  And I don’t think it matters one bit. Every kind of blue can represent Dysautonomia Awareness.  Why not?

Every time I tried to settle on a price of the bracelets, I was stumped.   Then fellow Dysautonomiac, Andrea, had a suggestion:

“Why not give the bracelets to the biggest donors, as a thank you gift?”  …brilliant idea, that is!

So that is what I am going to do!  Would you like one?  Head on over to Michelle’s page to donate!

Here is how it will work.  YOU NEED TO DO BOTH STEPS TO BE ELIGIBLE

STEP ONE: Go here to donate the amount of your choice Make sure you reference your donation with the phrase CHRONIC-ILLS of RACH SENT ME and your name.  The picture below is just an example…

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STEP TWO: Comment below to let me know you have donated.  By commenting, your email address will be visible to only me.  I will only need to use it if you are a bracelet winner.

Note: You don’t need to disclose how much you have donated in your comment, unless you want to.   At the end of the month, I will check with Michelle to see which donations to her fund are the top contributors using that reference line.  I will gift as many bracelets as I have to the same number of people who donate the most generously. Then I will contact the bracelet winners to ask you how you’d like me to get your bracelet to you.  It doesn’t matter where in the world you are, I will get it to you.  A tiny little thank you for your generous giving.

Please, would you help us raise money for our cause by assisting with research funding here in our part of the world?  If you are not in a position to donate, would you consider sharing this fundraising page with your circle? We’d all be so grateful.

Thanks!  Rach
and all Dysautonomiacs in Australia and New Zealand

BUT WAIT!  THERE’S MORE! 
Two of my very talented friends from my bloggers group have donated their skills to the cause.  Anya Bykar of Clear Design Creations in Tauranga is donating the most adorable beaten silver wire and crystal bracelet (picture to come… I am so excited!) and Bea Chuan from Simply Bea handmade creations, who does lampwork glass beads has donated some of her very special beads to the cause. My talented sis is going to turn them into a wearable piece for one of you!  (picture to come)!!!!

UPDATE:
Today is the last day of Dysautonomia Awareness Month.  My sincere thanks go out to Jenny Jones,  Carol Mowbray, Emily Doddrell, Felicity, and Emily Smigrod.  If you would like to receive an awareness bracelet as my token of thanks, please message me your contact details.  If you comment below, your email address will be visible only to me and I can get in touch about delivery. Wonderful people!  Thank you so much!

We Met On the Internet

Once upon a time, meeting this way was considered scandalous, even dangerous!  But, just as the early days of internet dating required certain intrepid desperation; my own desperation sent me online in search of people like me. It is so easy to feel isolated when you have an odd illness.  And when the illness carries on for years that loneliness looks for others.  Here is how I found the rare birds in New Zealand who are like me…

When I was first diagnosed, Dysautonomia is not the name I was given for what was wrong with me. Back then, I was mostly having problems with dizziness and fainting, things were to progress but I didn’t know that then.  Investigations showed that my heart was stopping, so they put in a pacemaker.  I was told there were very few people with my particular problem in New Zealand.  When I asked if I could get in contact with the ‘very few’ I was told that privacy laws prevented me from having their contact details. Which is perfectly logical, but not helpful.  It sounded like a job for the internet.

Let me explain a little first, about my odd condition. Dysautonomia is an umbrella term used to describe several different medical conditions  which all feature autonomic nervous system dysfunction.  The autonomic nervous system controls the ‘automatic’ functions of the body that we don’t think about.  Pupil constriction, tears, saliva, heart rate, blood pressure, digestion, bladder and bowel function, temperature regulation and the body’s ability to compensate for changes in posture.  Patients often feel dizzy and nauseous. They may not sweat properly, be able to pee and poop normally. Headaches can be a feature.  Fast and slow heart rates, labile blood pressure. They can experience brain fog and horrible pain related to various dysfunctional aspects of their autonomic function.  All the while looking perfectly normal.

Our bodies themselves are usually structurally fine; it is the dysfunctional nerve conduction that creates our problems. Our bloodwork and other tests can be fine. Yet we are not. Dysautonomia is often referred to as an ‘Invisible’ illness because it is hard to see the debilitating effects by looking at a person’s appearance.  Spend some time in the company of someone with Dysautonomia and you will see that it isn’t really invisible at all.  Our quality of life has been compared in the literature to patients with congestive heart failure. Functional disability is often a feature of patient’s experience. In short, Dysautonomia is really hard to diagnose and really hard to live with.  We all wish that more people understood that. We run marathons every day, just doing simple daily tasks.   And before we even got to this stage, we ran the marathon of searching for answers to our medical oddities.

Patients with Dysautonomia typically wait years for diagnosis, often suffering wrong diagnoses and medications along the way.

In my early search to understand more about my condition, treatment options and prognosis, I looked for medical information and support groups online.  Even my doctors couldn’t help me with more information. I was desperate to know more, to connect with others like me. People choose whether they want to be online, so my chances of meeting others like me who would want to meet in person was much better. To start with, the groups were all American. Then, occasionally a new Australian member would appear.  I posted messages, I scoured the boards, but New Zealanders were nowhere to be found.  Years passed and I gave up looking online for people like me.  It was too disheartening.

Then, a neurologist explained that I had Pandysautonomia.  It is a rarer, widespread, progressive form of Dysautonomia, the cause is still unknown.  There is no cure without a cause so the symptoms are treated as they occur.  The medication and treatment regime can be almost as debilitating as the condition itself. Armed with a new name for what was wrong with me, I hit the internet again.  The neurologist said he knew of one other patient like me, in Wellington. I was determined to find her.

How much the internet had sprouted in the time I had been absent! There was a new, large not-for-profit organisation in the States, raising  awareness, funding research and hosting conferences for people with Autonomic Dysfunction.  They pointed me in the direction of a popular Australian Dysautonomia blogger.  She pointed me in the direction of and Australian/New Zealand support group.  And there, at last, I found my ‘birds of a feather’.

There were already Aucklanders there!  And the girl I had heard about from Wellington! I was beyond surprised!  I cried. As nice as it is to wave across the digital divide to one another, it’s all kinds of wonderful to meet up.  I’ll never forget our first time. The relief of being around people who really got it! I talked so fast I could barely get a breath in. We laughed. We shared stories of doctors, discussed the differences in our treatment plans. We call ourselves ‘The Horizontalists’, because our meetings are usually in a park, lying on blankets and pillows. We commiserated with each other and our eye contact spoke volumes of unsaid words, unshed tears.  We continue to meet, our group has swollen in recent months as new patients are diagnosed and find us online.

Our kiwi group is 16 strong. Kathleen, Janette, Renee, Zen, Kirsty, Carolyn, Andrea, Sarah, Hailee, Rosie, Felicia, Hayley, Sarah, Rebecca, Rachel and little Emi (see a pattern there? 80% of people diagnosed with Dysautonomia are female). If there are more of you out there, shout out!  We’d love to find you.

Every person in that group is a crucial part of their family and friendship groups; each of them languishing with a diagnosis that lacks adequate research or effective treatment. Awareness is slowly increasing in the medical community, so diagnosis is more common now.  The thing is, the many forms of Dysautonomia is not as rare as you would think (more than 11 million people worldwide), but they are rarely diagnosed in New Zealand.  Some of the forms of Dysautonomia are Postural Orthostatic Tachycardia Syndrome, Multiple System Atrophy, Pure Autonomic Failure, Autoimmune Autonomic Ganglionopathy, Pandysautonomia & Familial Dysautonomia.

Finding others like me has brought me a community and comfort that is unparalleled.  But there is still so much to do. October is International Dysautonomia Awareness Month. It’s a tough gig pushing awareness when our numbers are so few.  We are generally too sick to do all the usual methods for getting the word out there.  But we are driven. We know that out there are more people like us, and people with autonomic problems which have yet to be diagnosed.  People struggling through each day, invisible in their communities, simply because no one knows about what they are going through. We really want to change that. Our community of patients might be small, but so is New Zealand.  We know our wider community will open their minds and hearts to people with invisible illness, as soon as they know we exist.

Dysautonomia = Dys (dysfunction) Autonomia (of the autonomic nervous system).
Dysautonomiacs = Regular people afflicted with this debilitating, sometimes invisible, chronic dysfunction of the autonomic nervous system.

Good sorts to meet on the internet.  🙂

 

October is(5)

 

Speed Dating Doctors

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First up, I am NOT suggesting, like the cartoon, that you take your top off!  😉

Over the years that I have been sick, I have been to hundreds of medical consultations. I have spent thousands of days thinking about the way to approach my illness and the doctors who are there to help me with it. In its own way, an initial consult is not that different to a speed date. You sit across from someone you have never met before.  You want them to ‘know’ you as quickly as you can, without frightening them off with your enthusiasm or putting them off with the lipstick on your teeth.  You are conscious of the way you are dressed, the words you use, whether the package of ‘you’ is providing them with enough motivation to want to see you again.  Or in this case, to want to help you.  It feels like desperation.

I’ve had months at a time of simmering anger about the nature of medical consultations. The complicated social and human dimensions of these interactions. The unfair onus, placed on the already sick patient, to make the relationship work. The challenging time frames, the workloads and stress the doctors are under. The nature of the beast.  It feels hopeless.

And I’ve had happier times, reflecting on meetings that have gone well, optimistic conversations, good patient-doctor dynamics.  Feeling cared about, knowing they are using those good brains of theirs on my behalf.  Knowing that I matter to them. That in spite of the symptoms that are dogging me, they have seen who I actually am underneath it all, and spoken directly to the ‘inside Rach’. The real me.  Not to my illness, nor to my husband, but to me.

It has emerged over the last six years of my illness, that there is a way to behave when you go to see a specialist.  You should be able to just rock up, in whatever state you are in that day, and be helped.  But that is a pollyanna wish for a pollyanna world. So given that we don’t live in Utopia and the challenges facing doctors and patients are not about to go away, I have compiled eight points for approaching doctor visits.  I’d love to know if you agree or disagree and especially, if you have something to add!  You can use the comments function below to add your two cents worth.

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If you can afford it, or have insurance, always seek private help when you can.  Private specialists have more time to spend with you and access to an even wider range of services through their networks, often for more timely and responsive testing and further investigations.
Public hospital clinics are time-poor, the specialist doctors have huge workloads.  That being said, if you don’t have private health insurance (like me), it is possible to find great doctors (sometimes even the same doctors you would find in the private health sector) and wonderful assistance through the public system.  You just have to be prepared to be a patient, patient.  Things don’t happen in a hurry.

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Carve out a week before your consultation for rest.  Sleep as much as you can, eat as well as you can.  Resting gives you the best possible chance for mental clarity at your appointment. I think this is one of the most crucial aspects of your visit.  Gather together your papers, or anything new that might be of interest. If you are taking along some research journal articles you have recently found, make sure it is a copy you can leave with the doctor if they want to look at it later.  If you have to travel some distance to get there and you can stay overnight near to your appointment the night before, organise that.  Allow lots of time to rest between travel and appointment.  Unless you are going for tests.  If you are going for tests, just carry on as normal in your daily life so the tests reflect your ‘normal’.  Your doctor might want to know what you goal is for the consultation.  Make sure you have thought about that.  What are you hoping to achieve? Make a note, on your phone or somewhere you can access it easily.  Forgetting might be part of the way you roll, it is for me.  Write out any questions you have and make sure you ask them.
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When I go into a specialist or doctor consultation room, I always say hello and ask them how they are. I tend to slide over their initial ‘How are you?’ with ‘I’m happy to be here -or- pleased to see you -or- getting through, thanks’.  I think it is appropriate to give them the lead for the conversation and listen quietly while they explain their intention for the meeting and what they are going to do next. They will usually ask questions.  I try to answer them all but sometimes I get a bit foggy. I think it is okay to apologise for that and explain that sometimes I find it hard to find the words I need.  Do Use your P’s and Q’s.

Politeness also extends to the way you object, if you need to. There are times when you need to make a point.  You never need to raise your voice, in fact, making your voice slightly quieter and taking it slower can have just as much impact.  Don’t settle on a misunderstanding, make yourself clear and  repeat their response back to them if you need to. i.e. “So you are saying that I need to have x, y or z done?  Should I organise that? How does it work?”

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There are two aspects to this one. The first is that I like to form a partnership with my specialist ‘What would you like me to do -or- how can I help achieve this outcome -or- can you recommend any further course of action?’ is a great way to open a partnership if they seem amenable.  It’s not worth trying if they are not engaged with your situation.

The second is, that hands down, when my own partner is with me in consultations, the appointments always go better.  He helps me with the words I can’t find, he knows my medical history and he can offer the specialist another opinion on how things are going.  I also have found that when I have attended appointments on my own, I have been more likely to feel bullied, passed over, misunderstood and as though I am simply, a nuisance. Somehow, having my partner there lends credibility to all the things I say myself.  And I can clarify things with him afterwards “…what did they say about that, again?”  If you don’t have a family member who can go with you, seek out the patient advocacy service at your local hospital or clinic, or ask a trusted friend.

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Maybe it is a throw back from my childhood, but I am a big believer in the importance of presenting well. I think it shows doctors that I value myself. And if I do, they will. I don’t bother with makeup, but I make sure my clothes are fresh, neat and presentable. If I am likely to have electrodes stuck to my ankles, I try to shave my legs before hand.  I make sure I smell nice.  If I can, try to have washed hair, or run a brush through it before the appointment.  If I am going to have a neuro exam, I suck on a mint beforehand.  The close personal space is stressful for me if I am thinking about my breath. If only the courtesy was mutual.  😉   A word of caution about cheeriness though.  If you are smiley and chipper, they may find it more difficult to look beyond the cover to what the book within contains.  Let’s not confuse them with social cues that would be more appropriate at an actual ‘date’!

The other meaning of the word present is in the context of being ‘present’. Really notice your specialist.  Consider their body language, give them eye contact.  Use your voice and don’t waste their time on issues that aren’t part of their specialty.  For instance, if I am seeing a cardiologist, he is unlikely to be able to help me directly with my urinary retention.  So rather than “I’m having trouble with my bladder” I might say “Can you suggest someone who might be able to help me with the troubles I am having with my bladder?”.  This acknowledges that you are heading off their brief but asks them to help in a reasonable manner.

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You might not be bothered about keeping your medical records, but I am. I like to ask my specialists if I could please have a copy of any correspondence forwarded to me for my file. In New Zealand this is not frowned upon and is easy for them to organise.  It is worth asking for, as some won’t do it automatically.  It also means I have copies of letters to show other specialists, right in my file.  Hospital computer systems are notoriously maze-like and having an organised file of your own can save your doctor lots of time.

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Not all doctors need you to play the game.  The good ones don’t, they are not swayed by matters of ego or intellectual superiority.  But some are. Make an assessment based on their responses.  If they don’t like it when you use medical jargon, don’t. Use non medical words (even if they are clumsier and take longer).  Recently a doctor asked me about my gastrointestinal symptoms.  I said that I suffer from post-prandial distention and dysmotility.  He asked me to tell him what happens, not the diagnosis.  I guess he wanted to establish that I was in fact correct in my terminology. Instead of getting shitty about that, I just slowed down and explained that after I eat my tummy ‘blows up big and then there are no digesting noises, it’s painful and huge until it all gets moving again’.  Some doctors have reasons for the things they say that seem arrogant. That’s okay.  Play the game, when they know you better you won’t have to.

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When you have a bad doctor visit. Followed by another bad doctor visit, by another, it can seem like there is no point in carrying on with it.  It’s tempting to walk away altogether, to not seek help when you are suffering or when symptoms worsen or something changes. Please persevere. Every appointment adds data to your medical file and at some point, a picture may begin to emerge. Don’t give up.

Oops!  …and there goes the speed-dating buzzer.  Will you and your doc give each other a tick?
I wonder if they think about these things as much as we do..?

Making Peace : Days Like These

I guess we all feel a bit awkward, thrust into a new group of people.  I think it is part of the human condition.  I went to so many schools when I was growing up that I did some crazy things trying to get people to notice me, to see who I was, beyond the be-spectacled, nerdy hand-raiser.  I was those things, but I was much more besides. I wanted them to get to know me faster, I wanted to find my kind of people and put myself out of my social purgatory misery.  Friends make the world go round.

I have a few dearly treasured friends these days.  People who are with me in person.  Supportive, wonderful women who are strong and wise and warm and funny.  Girls who ‘get me’.  I hope to have those friendships forever.

And then there are my online friends. I never thought I would have online friends. I didn’t know how to make friends online. But the people I have met through my support group for Dysautonomia and the people I have met through my blogging course, I now count among my best friends. I have been welcomed with open arms by people who ‘get me’. When a dear online friend died this year, it opened up a gaping wound of grief that has not closed.  It’s hard to understand how that is possible, but it is.  I’ve ‘met’ people who have changed my world from lonely to lovely. Warm fuzzy loveliness.  Connection instead of isolation.  These friendships are as real as those with people I can see and touch.

It is interesting to think that we have all met because of our struggles and shared pursuits. We reach out to each other from our solitude and we are no longer alone.  There is a deep resource of empathetic, beautiful souls out there; sharing experiences and caring for each other across the digital desert.  Beautiful people.  One day I would love to meet each one of them and wrap my arms around them in person.  Hello out there my friends.  You mean a lot to me.

I have a new group of friends, too.  A group that is just starting to build and grow.  People who read my words here.  I am so glad you are here. Everyone of us has difficulties we face and my hope is that no matter what yours are, you’ll find empathy here, with me.  I look forward to getting to know you, don’t be shy, make comments and I will respond, I promise.

Today I was listening to Janis Ian, one of the world’s most talented singer songwriters.  She wrote that song ‘At Seventeen’.  But she also sang this song.  I’d like to dedicate it today to my online friends.  Here’s to you out there, because even on ‘days like these’… you help me to make my peace.  I hope that I can help you make yours, too.

The Dysautonomia Divide

Relationships are an emotional engineering feat. There’s communication, so easy to get wrong, a thoughtless word can drive a canyon between two people. There’s the non verbal stuff, body language, expressions, eye contact (or lack of it).  There’s building intimacy and trust, or letting that slide.  Another great divide.

There are so many unintentional ways we can trip our relationships up.  My primary relationship is with a man, so we have gender difference warping our perspectives and carving new terrain for intrepid exploration.  He’s direct.  I’m sensitive.  What a winning combination. Not.

Sometimes I’m tired of strapping on the explorer kit and mapping the divide.  I get frustrated and fed up with the effort it takes to make it all work. It’s not easy maintaining a healthy relationship.  Is it worth it?  Absolutely.  But when I am scaling the sheer slick rock face of another misunderstanding, I think how nice it would be if we could cut to the chase and mind meld.

A little discussion was had this morning about Zed’s school concert.
“I don’t think I can go this time, honey” I said.  I knew it the moment I woke.  It is a fact of Dysautonomia that I miss out on many of the things that really matter to me as a Mum.  That means my kids miss out too.
(sigh) “Is this how it is for single parent families?” he thought out loud.
Then: (another sigh) “We ARE a single parent family.”

Ouch.

He left the room and went on to the next thing before he could see my eyes fill with tears.  My face turned toward the window.  I stared out at the grey day outside. My thoughts weren’t very pretty in that moment. I thought about what I must be to him. He doesn’t know how it feels to be inside this body.  He sees, this lump in the bed. This drain on his energy and patience. The not-so-silent partner, making my demands but not able to support him every time he needs it. I thought then about how unattractive I must be, this lumpy useless person I have become. Often so lost in my own health struggle, there is little left to give.

And then, I got really angry. I assessed who I am as a parent.  What I offer my kids in spite of my compromised abilities. I thought about all the things I do manage to get to, the smile-though-the-small-talk just for the chance to see my kids do something at school. The meals I cook, gripping on to the bench and willing myself through to the finished stage. I thought about sitting up at the bench to pre-wrap sandwiches and lunchbox snacks, long after my best-before had been and gone.  About morning cuddles on my bed with my babies, good long deep-and-meaningfuls. I thought about all the little bits of evidence that I am doing my best, despite Dysautonomia.  I am still parenting.  I whipped all that up into a whirlwind of objection.

And I told him how much it hurt to hear him suggest he parents on his own.
He was exasperated.  “That’s not how I meant it!  Why can’t you take it the way it was intended?”
And again, we are surveying the divide.  We decide we can, with some teamwork, breach the gap.

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These discussions aren’t uncommon for us. Relationships are hard work.  Once our bridge was built, we took a moment to discuss the difficulty of relationships in the context of chronic illness.  I asked if I could write about our morning argument and he agreed. I asked him what the worst part of our marriage is for him. If you too are living with chronic illness, you know all too well what the perspective of the sick person is. Here are his reflections from the bloke point of view, the other side of the dysautonomia divide.

“One of the hardest things to cope with is the inconsistency around the margins. I can never predict if you’ll be able to help or be of no help, I have to be able to roll with that. Even when I’m exhausted from a big day.

I carry a lot of guilt towards the kids, I seem to spend so much time doing necessary stuff around the house instead of hanging out with them or doing fun stuff.

I have to watch myself.  It is easy to compare what would’ve been with the way it is. That can be really depressing.  It’s best if I don’t compare.  I feel sad about what the kids are missing out on by not having an active mum. I try not to think about what I am missing out on.

I am balancing the challenge of work, sick wife, kids. If I need to do more at home, that’s less time working and earning.  There’s a knock on effect. That doesn’t leave me much mental space. I grind through every day trying to be optimistic. But it’s not easy.  Sometimes I have to go and smash zombies with my cricket bat*”

“So, why do you think our marriage still works?” I asked.

“We love each other, we’re friends, we’re supportive and we don’t let our differences fester. We make ourselves deal with it. Generally we dovetail really well.  We are tolerant of each other.  We respect and trust each other.  We believe that the other has our best interests at heart.  So there is room to argue and get over it.

Also, we’re committed to our future; we’re both working really hard towards it.  I work hard to earn the money and keep the family going, you work hard to find a solution to the health situation. We’re both pulling in the same direction.


It’s like Jack Reacher said in the last Lee Child novel. ‘You have to expect the best and plan for the worst’. I’ve seen you through so many dips. We have always come out the other side at some point. Also, I’m optimistic about recent treatment possibilities.  There are lots of arrows pointing in the same direction. Is that wishful thinking?  That’s what optimism is.

It’s like when Team New Zealand were racing in the America’s Cup. Every time you lose a race it dents your confidence.  But you still have team spirit. You still believe it’s possible. We are a team.”

* don’t worry, it’s a computer game.
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Does your relationship suffer because one of you is ill?
What do you do to keep it together?
How do you bridge the divide?

WEGO Health Activist Awards

The Chronic-ills of Rach has been
nominated for “Rookie of the Year” in
WEGO’s annual Health Activist Awards.

I am really chuffed!

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Especially because I was nominated by my blogging hero, Michelle from Living With Bob.  That’s like a kid who loves to play footie being nominated for a rookie award in their local club by David Beckham.  She’s a huge voice in the world of Dysautonomia Awareness.  It’s a big privilege for me to join my voice with hers in making some noise.  I might live in a small country down here at the bottom of the world, but antipodean voices are just as loud when we get them out onto the web. Blogging is a pretty amazing thing, don’t you think?
Want to be a part of the decision about the awards?

You can endorse my nomination: here.

And whether you do or whether you don’t, thank you.  For being here and reading my blog.  The community of people that is forming around the Chronic-ills of Rach, and Dysautonomia awareness in general, makes my heart sing. Michelle, thanks for the nomination. You are such an encouragement. Mwah! X

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