Blue

Feeling blue has been big in the online world lately. People are starting to talk about depression and anxiety, about mental health in general. People are having conversations that may in fact make a big difference to our society. For our terrible suicide rates.   ‘Feeling blue’ can be a twee kind of way to say that someone is sad, low, down or depressed. I’m not going to write about feeling blue today. If you want to read a really great post about that, head here, or here.

Sometimes, in my experience of life with a chronic (invisible)  illness, I think it might be useful if I was actually blue.  If I was a little blue creature like the ones in this Eiffel 65 clip (sorry, but I have had this song stuck in my head), no one would expect me to do the things that a big grown healthy human might be expected to do. They would see at first glance that I am different.  They’d ask me all about it, they’d wonder about my species and scientists might want to study how my body works.  I may be weird, but I am no little blue man.  There will have to be other ways.

October is Dysautonomia Awareness month.

Blue is the colour of our awareness campaign.  It’s a pretty blue.  Although, there is some political disagreement currently, about our ‘exact’ blue…  Apparently the prostate awareness colour is deep blue (all this awareness campaigning can be confusing). Dysautonomia International’s Awareness campaign this year is ‘making noise for turquoise’… but longer standing groups have been using a mid blue for quite a few years.  So I have decided to embrace every blue hue this year.  Brilliant blues. I don’t think we need to have a blue about it.  Let’s just be blue.

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So, how?  I’m not the sort of girl who could pull off a body painting situation, someone might mistake me for a giant jellyfish and roll me back into the ocean.  Nail polish is great, you know?  But a bit last year.  I’ll still be having blue nails for Dysautonomia Awareness month, but Michelle from Living with Bob had a brilliant idea. She told me she’s doing something kind of radical for October.
Inspiring.

I’m going to kind of, sort of …do what she is doing (it’s a surprise), but to a much lesser extent, ‘cause I am a wuss.

This month, to get people asking and give me an avenue for talking about it, I’m going blue too.  I’ll take some pictures tomorrow, as it happens!  I’m also going to wear as much blue as I can, all month.  I am going to pull out last years’ nail polish.  And I’m going to instagram a blue photo every day.  #dysautonomiachallenge   Want to join in?

Cos I’m blue, dab a dee dab a dah.  
I got dysauto-nomi-a…

I am trying not to feel like a big blue failure though.  October is our awareness month. I’ve been thinking about it for months, I even had a friend, the very talented Katie Clausen, do a little drawing for me so I could make t-shirts, but I haven’t even got that together. I bought bracelets to sell for a fundraiser, and I can’t find them anywhere.  Boo.

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For now, I’m going blue!

Awareness month will need to evolve in its own fashion here on the Chronic-ills of Rach. 
Will you be going blue, too?

 

TA DA!  Here’s a pic of my new, blue, do.

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So Full of ..it.

Public health and sensitive person warning. This post is about POOS.

Hello.  My name is Rach and I haven’t had a poo in 16 days.

That means that I really am, full of sh#t.  Before you leap in with wonderful suggestions, you should know; I have been ingesting chia seeds. Hydrating. Taking my usual laxative pills. When I am a good girl, I also take soluble movicol, which isn’t nearly as bad as I tell myself it is. Somehow getting to the many-sachets-of-movicol-in-one-hit-stage feels like a failure to me. An admission that I haven’t been able to manage my recalcitrant pooper.  So I ignore it for a while. And then comes the enemas.  I really hate them. I feel like they are the perpetrators of evil. They promise much and deliver little. My poison pals.

When you have Dysautonomia, you may also have to make friends with the enema.

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What’s worse than having enemas? Having to give them to yourself.  It honestly feels like self-abuse. Like I am violating my most private parts.  Oh!  That’s probably BECAUSE I AM.  And while I am getting into position for this special kind of friendly assistance, I am always compelled to read the box.  It doesn’t help matters.

Gently insert enema tip into rectum with a slight side to side movement.

If I am already on my side, what then is side to side?   Wouldn’t that then be up-and-down?  And would that be the wrong motion for my poor pooper?  I try to imagine that my hands belong to a nurse, the sort who just gets on with it.  I make small talk with myself to distract myself from the embarrassment at hand. “how’s your day been today, Rach?  A bit sh#t?”…  I do the business.  Why do enemas always feel cold? Should one warm it up first?  That might be kinder…

WARNING: Do not use when nausea and abdominal pain are present.

Duh. That is why I am using it. 16 days being full of sh#t will make anyone nauseous and abdominally pained.

…failure to have a bowel movement after use of a laxative may indicate a serious condition.

No sh#t, Sherlock! Failure to have a bowel movement for so long that you need to use this kind of laxative may indicate a serious condition too. Who writes these box words?

EFFECTIVENESS:  usually produces evacuation within 2-5 minutes.

Maybe in another dimension. I’ve been sitting here for fifteen… the box said that after administration I should:

…maintain position until urge to evacuate is strong.

Nope, nada.

At that very moment, my hubster walks into the bedroom and asks me what’s up. (!)
“Benzalconium Chloride. Apparently.”  I mumble,  then, “I’m writing about enemas while I wait for this one to work.”
“Do you think people will want to read about that?” he asks.

Well, no. But I didn’t think people would want to read about chronic illness, suffering, sadness, frustrations, my medical menagerie, grief, doctors, my taste in eighties music, my family, doctor-suessy-post-mortem-instructions or dysautonomia, either. It’s kind of a job lot. 
(By the way, if you are reading, you deserve a medal.  This is not a topic for just any reader, it’s only for the best kind of readers, like you).
My hubster cocks his head to one side and drops this, in a funny voice. Smiles and leaves the room again:

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I laugh.  A strange kind of sensation travels along my bones and into my left shoulder.  Could I call that an urge?

I don’t know.  But I am hopeful.  Please Frenema.  Give me the sh#ts.  I don’t think I can bear any more crap poetry.

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Update: Just wanted to reassure the worriers out there.  Poop has been made.  Here is a song for the purpose of celebrations:   Don’t sit under the POO TREE!
Because.  Eventually, shit happens!

Gone Girl. A Tale of Road Rage.

On a scooter.

Yesterday was my birthday…
I turned 28.  In hexadecimal “nibbles”.
(google it, hexadecimals are kinda cute).

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But back to the story…
…my friend Flo came and picked me up and took me to the mall.  The scooter hire girl remembered me and I got the highly coveted Scooter Number One. It is zippier, better at stopping when you ask it to, and the side mirrors don’t flop down all over your handbag.  Score! I tootled around a few shops high on the joy of a birthday and time with Flo.  I tried not to be distressed that I couldn’t even get down the lingerie aisles in Farmers Department Store. I figured I didn’t really need a birthday bra. I smiled anyway at the shop girl near the fitting rooms in Esprit when she said it might be easier to shop online. It might.  But it isn’t as much fun as shopping with Flo. And why shouldn’t I enjoy a bit of retail therapy?  Then I dropped Flo off for her appointment at the makeup counter.  I should be, er… more into makeup… but the bookshop was just down one floor and it is an unfair competition! Hmmm… makeup, books, makeup, books. It’s really no competition between makeup and books.  A hole was burning in my pocket.  For my birthday I’d been given a cool hundy, and I was thinking about the delicious potential to drop it exclusively on BOOKS!  Squeee!

I scootered down there faster than you can say ‘tortoise’.   A few aeons later, I arrived.  Mobility scooters have a speed switch that ranges from slow (a tortoise icon) to fast (you guessed it, a hare)… but even at hare-speed, it takes a looong time to get anywhere.  In the front of the bookstore of choice, Whitcoulls, they have some displays of new releases.  My twitchy fingers were eager to pick up the first one I could see. I liked the title, ‘Gone Girl’.  But the angled display tables made it impossible for me to pull up alongside on my scooter. I did a sleek little (sixteen point!)  turn and tried to reverse in. I banged the corner of the table.  A Whitcoull’s employee looked across at me, arched her eyebrow and walked off in the opposite direction. I reached for the book. It was 5cm out of my grasp. There was no room to ease myself off the scooter and stand to give myself more reach. Had I had room, I’d have been able to do that. But it occurred to me in that moment, that many people in wheel chairs can’t stand to get to things out of reach; what would they do in this situation?  I looked around for the employee, hoping for some help.  She was gone, girl.

I was not going to be deterred.  A hundred to spend on books is one of the greatest gifts of all time. I wasn’t going to let a bookshop girl with her archy eyebrows get the better of me.  I gave my embarrassment a silent talking-to and manoeuvred out of the space.  At the back of the store, the wall is lined with authors from A-Z.  I wouldn’t have a spotlight on the newest, but I might find some gems. I set my course for the rear. Half way on the dial between tortoise speed and hare speed.  I was veritably hurtling, turtle-style. The aisles in Whitcoulls do fit a scooter if it is going straight down the middle. Sadly, turning is not optional.  People on mobility devices clearly shouldn’t want to browse in bookstores. There are artfully arranged stacks of merchandise on the floor at the corners of all of the aisles.  The Little Yellow Digger-gift-boxed-set display met Scooter Number One as I attempted to round the corner. Scooter, 1, Diggers, 0.  A mother in the same aisle helped me by picking them up (thank you anonymous mother).

I spent half an hour in Whitcoulls. I looked for help no less than fifteen times.  Help to reach down titles I couldn’t reach, help with the infernal aisle corner displays. Help finding the poetry section.  I saw three more staff members. All three saw me and changed direction. No one offered to help. The crickets chirped.  When your eyes are not at the height of standing people, it is quite hard to get eye contact.  When you are down that low, even a wave can be lost behind a bookshelf. My hundred dollars hid deeper into my pocket. No party for it, today.

I lost my desire to purchase books from that store. I threw the scooter into reverse.  It has a really high pitched reversing beep.  It’s an incredibly annoying sound. I left it in reverse long enough for archy eyebrows girl to give me one last look. I accelerated past one last corner display.  I may have *cough* inadvertently disturbed its symmetry. I left the store.  In my imagination I looked a bit like a speedy hare, leaving a cloud of dust in my wake.  In truth, it was a less dramatic exit.  Think, slo-mo.  But the expression on my face remained steely resolute.  I patted my pocket. That’s a hundred bucks you don’t get today, Whitcoulls.  And then, I was a gone girl, too.

So my post about my birthday books is postponed.  …maybe there is a bookstore out there who wants my custom, even if I am not walking on two feet.

________________________________________________________________________________
PS:
I sent the people at Whitcoulls a link to my post as soon as it went up.  Very quickly Diane got back to me.  I am very grateful for such a timely response and so glad that the store will look into ways to improve customer service for people on mobility devices.  Thank you, Whitcoulls.
________________________________________________________________________________

This is what she wrote:
Screen Shot 2014-09-26 at 4.54.42 pmThanks for touching base and sharing your in store experience with us. It is disappointing that we have not been able to deliver the customer experience you, and every customer, deserves. There is nothing better than browsing books especially in the excitement of birthday present shopping. I will be passing this information onto our Store Manager to ensure they can look into this situation and how they can use this to improve their customer service.

In the meantime, I would love to extend a birthday present to you from Whitcoulls. If you are still interested in the Gone Girl Book, I would love to send you a copy along with a $20 Whitcoulls Gift Card that may enhance your birthday spending money. If you can send us your courier address and we will arrange to get this out to you.

Kindest regards,

Diane

 

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.

Imagine

I wonder if you could take five minutes to try something.
It’s just a short imagination exercise.

Can you imagine.._(1)

Can you imagine what it might be like, to get a terrible flu?  And how it would be if that terrible flu never, ever went away? After one week, the patience of your partner wears thin.  After all, there are kids to look after and he is working, he’s not a naturally great nurse, guys are like that… you’re sure your girlfriends will have stories to share about their men, too, when you’re better.  You’ve a job to get back to yourself, you can’t keep on waking up, saying you can’t and shutting your eyes against the day.

Then imagine that being sick carried on for a whole year.

Fifty two of those flu weeks, end on end on end. The family needs you, so even though you still feel like you felt for that first week in bed, you get up and carry on. Every time you move the dizziness sweeps over your world as your body struggles to find some equilibrium.  You are bone weary. You adapt your usual tasks so you can do them.  Sometimes you crawl. You lean against any surface you can.  You avoid bending, or standing quickly, because that might make you faint.  It beggars belief how many household tasks require bending.

You take on less hours at work, but quite frankly, your boss has had enough. You, who have always been a perfectionist, have become an unreliable employee, your sick days are mounting. You talk to them about what is going on, but the doctors haven’t been able to give you any answers.  Your boss, your colleagues, your friends and even your partner start to look at you as if you might be making it all up.  Surely if something was really wrong they’d know what was up with you?  Maybe you are not trying to get better?  Maybe you are psychologically broken, somehow? I mean, it must all be in your head, you look perfectly normal. You doubt yourself. You quit your job.  Your relationship is under pressure. The kids are acting out because you are struggling to do your parenting job too. The years stretch out. One, two, three.

You’ve been in and out of hospital more times than you can count.  It is now clear you are not manufacturing the things that are going wrong with your body.  They put in a pacemaker to make sure your heart keeps beating. But there is an endless litany of other things wrong, too.  You are afraid of dying, because sometimes, it feels like you are. There are moments in the emergency department when everyone is buzzing around you and there is nothing you can do but shrink your self into a tiny observational dot on the wall. It is too scary. Your partner doesn’t even come with you to the emergency department anymore, it’s better for the kids. You taxi in to emergency, always with a bag.  You know you will be admitted.  You don’t know for how long. In your many visits to the hospital a picture is slowly beginning to emerge. You start to research the things that are happening to your body.  Something keeps coming up on Google.  The Autonomic Nervous System.  You ask about it next time you are in.  Chins are scratched, thoughtful silences. Referrals.  Specialists.  A diagnosis.

You’ve been sick now for four years.  208 of those flu weeks, end on end.

Can you imagine what it might feel like to get a diagnosis?  You are relieved, so thankful to have a way to explain what is wrong with you.  Even to yourself.  There is a thing that you have!  Now that they know, they’ll be able to fix it, right?

And can you just imagine your distress when you discover that the diagnosis isn’t the end of the struggle… just the beginning?  You’ve been lurching through a long distance marathon with the flu, you are exhausted, always waiting for the reprieve, the finish line, the bit where you get to stop and recover. They tell you that what you have is rare and it will be hard to find someone here who understands it, let alone who has ideas for treatment.  You research more.  You join online forums, patient groups, you read everything you can. You print out and highlight medical journals and read them, searching terms on the internet, desperate to find a way out of the maze.  You put forward medication suggestions, based on your research.  Every single treatment you are on that is working has been suggested by you. Even in hospital, you have to educate the registrars who come to see you.  It makes you feel vulnerable. What if you are missing something important?  You don’t have a medical degree, you are nervous when you know more than they do about it. You email research to your doctors. The nice ones might look at it, the others might ignore it. Much like what they’ll do with you.

Then you find a group, online.  They all have what you have. There is sharing, and laughter and illness related humour (yes, it exists!).  There is compassion and kindness and expertise.  Resources and empathy and support. You are not alone. The relief is enormous. You’ve been fighting for help for six years now. You feel a different kind of worse every day. Once upon a time you used to dance. Sometimes you struggle to walk down the street and back again with your cane. Your life is light years away from the way you were before.  You don’t know if you will ever get back to the fork in the road where everything went wrong, so you can step back onto the trajectory you were destined for. If you are honest, you fear you won’t.

You’ve been sick now for six years. 312 of those flu weeks, end on end.

There are worse things, it’s true.  Some people like to remind people like you, that you’re lucky you don’t have cancer. You’re not sure how comparing illnesses is helpful.  It doesn’t change your suffering. Your cardiologist once talked about how people with your heart problems are ‘functionally disabled’ and literature from the States talks about you having the quality of life of someone with congestive heart failure.  But that’s not helpful either. Your reality is you don’t have YOUR quality of life, the one you relied on, based your decisions on, built your plans on.  I’m sure you’re grateful you’ve got your marbles. Glad that you can still walk short distances.  Thankful that you can hug your family. Maybe you’d just like to enjoy those things without feeling like crap.  Maybe you miss the connection between wanting to do something and being able to, just because you can.

What if all the things about your identity, the things you knew to be true, aspects of your personality, the things you do, the way you get around, your career, your parenting, your partnering.  What if all of those things were compromised, because you got something like the flu and it never, ever went away?

Thank you for sharing my journey, for 5 out of the three million, one hundred and fifty three thousand and six hundred minutes I have been sick. If you can imagine how this is, please be kind to the people you know with chronic illness.  It is a hard, hard road and we need your kindness.

Can you imagine?

 

My Childhood in 5 tracks.

I’ve been thinking about what a gift music is.  I am not musical (it’s a tragic genetic mistake), but oh, I love music!  I can trace my memories by the music that I was listening to.  We were discouraged from listening to most secular music. I remember my delight when my Dad bought me a walkman with a built in radio when I was 11.  It was my covert ticket to the American Top Forty.  I had some tapes I was allowed to play (Amy Grant, Michael W.Smith, and Silverwind) but I wasn’t supposed to listen to the radio station. We only had one local radio station, so I would lie in my bed after lights out, looking out through the flyscreened louvre windows into the dark night.  Really FEELING the music on Kalang FM, you know? It was music of every genre which is maybe why I have such eclectic taste in music now.

I thought I would take myself on a tour of five most memorable tracks from my early years.  Want to come along?

I grew up in one of those happy clappy churches.  We took our sleeping bags to the night services and I’d fall asleep stretched out under the pews. I remember the sound of my Mum singing Scripture in Song choruses as she moved about the house.  We had a record player with lots of gospel records.  Like George Beverley Shea and Pat Boone.  My favourite was a singer called Evie.  I thought she was the prettiest thing ever, sitting in a field of daisies.  She sang lots of uplifting country gospel songs.  Listening to her music again, I can see where my early country music love came from.  Here she is singing “I’m only four feet eleven but I’m goin’ to heaven”.  All blonde pageboy seventies cuteness.

My big sister loved ABBA.  I think she had a poster on the wall and I ruined it by vomiting on it from the top bunk one night.  It wasn’t on purpose, honest!  I still love ABBA, in the way you admire the things that you know ‘belong’ to your older siblings. When I was teaching I used ‘Mamma Mia’ as my packup-time-cue every afternoon.  The boys always loved to sing “Yeah, I’ve been broken hearted/ blue since the day we FARTED”  Bahaha.  Some things never get old.

When I was seven or eight, I remember my singing with my sister after lights-out, the theme song for Greatest American Hero and ‘Don’t You Want Me Baby’ by Human League. This was an early influencer of my Sindy doll game plot lines.  I was convinced that the best pathway to love was for the girl to be a waitress in a cocktail bar.  Hello eighties synth pop.  Maybe this is why Mum and Dad wanted to have a say over what I was listening to.

My best friend Nikki had a tape she got back in Australia at the end of 1984.  It had the Axel Foley theme song on it, and this hugely evocative song (for me), Together in Electric Dreams.  
 I remember her lime green chenille bedspread, lying on our tummies and organising her collection of erasers.  They had sniffy flavours like grape and tutti frutti.  We would split our time between rollerskating, swimming, Sindy dolls, sucking on frozen green cordial and listening to her cassette tapes.  Ah, good times.  It was at her place, in a makeshift hut we erected, that I read the book ‘Where Did I Come From?’.  It was a disturbing book all about the birds and the bees and I will never be able to look a rotund cartoon man in the eye ever again! Those years being Nikki’s best friend were some of my favourite from my whole life.  
I miss you Nikki.

We went on an epic trip as a family at the end of 1986, winding our way up the Big Sur in a station wagon.  Dad had a thing for what we called trucker music.  My bro and I still sing Roger Whittaker’s ‘I’ve gotta leave ol’ Durham Town’ for a laugh.  ‘Trailer for Rent’ reminds me of these times too.  I saw Yosemite National Park from the drop down back seat in the boot of the car.   And then I was a high school girl.  Already six foot tall and going to my first school social under the Year 7 block.  Wrapping my arms around Michael Francis for my first ever slow dance.  I Just Died In Your Arms Tonight by the Cutting Crew. I was all hormones and idealism. I was 12 and he was 18, but I couldn’t understand why that caused such a fuss. I was to learn. But that is another story for another time.  😉

And then, boarding school.  Sinead O’Connor, Tracey Chapman, 1927.  RAGE on the common room TV.  I had my own stereo tape player with a speed dub function.  I was living the high life!  And there was ‘serious’ young love. Shaun Welsh played me Richard Marx, LOUD, from someone else’s boom box in the Bell Tower. Right Here Waiting for You. It was a grand romantic gesture. Breaking my adolescent heart with the torment of his own.  And then there was Roxette, It Must Have Been Love.  I shared a dorm with fans of Guns n’Roses, Metallica, Jon Bon Jovi and Janis Ian.  I watched the movie ‘Beaches’. I discovered Bette Midler. Barbra Streisand. These years were the years of heartache and homesickness.  I remember the smell of the boarding house, the flat ham sandwiches and pink afternoon tea cake, bruised apples and gingham table cloths.  Licorice, my secret horse.  Anthony Rees playing the piano and nights in the common room, hanging out. Semeka Walshe’s beautiful shoes with covered leather buttons.  Knox city, public transport, rat dissections and learning to smoke.  Alice, Tracey, Julia, our Fijian princesses.  Being a disappointment to my brother, but knowing he loved me just the same. Aw. Big years.

I never hear the music of these early years without being instantly transported.  It’s strange, the way music can do that.  Time warp you right back to where you were, the sights, sounds, smells.  They all seem attached to the music for me.  This year for my birthday, I am asking the hubster for a ‘mixed tape’ CD.  Forty tracks for forty years.
Here is the playlist:

ABBA -One of UsThe Carpenters -The(7)

What songs were the soundtrack of your young years?  Got some old favourites?  I’ve been listening to mine on youtube today.  It’s taken me back. If you’ve got a minute, why not go there and type some of your old favourites in?  It’s as good as a time travel holiday.

What will you be typing in to the search box?  Where will you go to today?  I’d love to know what your favourite songs are…

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.
___________________________________________________________________________________
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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Making Music out of DNA

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I’ve been sequenced, my DNA sample was sent in a slick little kit to the States; they sent me back the raw data and I sent that off to Stanford to be reported on.  I’m in the early hours of studying the reports that have just come back.

Apparently I have increased genetic odds for empathy,intelligence and good sprinting muscles.  Who knew?! Running isn’t exactly my forte! I descend from Northern Europeans and I am 2.6% neanderthal.  Genetically.  Not behaviourally…I hope.

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Those were the good bits.

The other bits I am not so sure I really want to look at again.  I’ve scrolled through a myriad of red-bordered “bad” SNPs and the sheer amount of further research I am going to need to do is a bit overwhelming.  There were some things that were no surprise.

I am genetically more likely to have autism, substance abuse issues (Ah-ha! Does cake count as a substance?), skin cancer and ankylosing spondylitis. I have mutations on three of the MTHFR genes.  (Yes, you are not the only one who thinks that sounds like swear-speak!)  My autonimmunity genes repeatedly show up on the ‘bad’ list, but on the plus side, I have a normal population risk for some of the big nasties.  There are more results to look at, more research to do.  I have many more questions than when I started out, but isn’t that what information does for you?

Reminds me of that schoolyard rhyme…
The more you read
the more you learn
the more you learn
the more you know
the more you know
the more you grow
and so it goes…

I am lucky, to be me, in this country, with a free health care system and a carefully regulated medical insurance industry.  I am in a very privileged position as far as my genetic information is concerned, it’s not going to affect the health care I receive in our current political climate.  Recently, the FDA put a stop to genetic profiling reports for medical purposes from the company 23&Me. I assume this is because the implications for people in the USA with regards to insurance and health care provision were too complex. And our genetic information should be handled with care.  We should have control of it. There are ethics and questions to be considered.

I was less concerned about whether or not this information might compromise my insurance picture down the track than some might be.  In this country, and because I was late to the private health insurance party, I have been declared uninsurable.  Yet I am still cared for in our hospital system and my medications are all subsidised.  In Australia, insurance companies are required to cover anyone, after a stand down, even with pre-existing conditions, so I guess Australians don’t need to worry too much either.  Is that true, my cross-the-ditch-cousins?

I feel quite excited about what the science of genetics can already tell us.  It gives me enormous hope for the future of medical research.  It puts me in mind of the medical scanning machines aboard star trek enterprise and I long for the day when patients can be assessed by a comprehensive diagnostic process, 100% accuracy, questions answered, measures taken. 
Do you think that day will come?

It’s not the first time my genes have been tested.  When my Mum found out she had ovarian cancer, she agreed to have her DNA tested for a mutation. They had just discovered that some familial ovarian and breast cancers showed up a mutation on the BRCA-1 and BRCA-2 genes.  My Mum had the BRCA-1 mutation.  There was a 50/50 chance that Mum’s kids would carry the mutation too, so my sister and I were tested. My brothers were recommended to be tested too, but testing has to be a choice for the individual.  In males the mutation is responsible for prostate cancer.

The mutation runs strong in my Mum’s line and we were so nervous.  I can thank my Dad for his genes; I don’t have the mutation.  My sister, too.  But many of my cousins were not so lucky.  There is only one lucky thing about that, we have the technology to test our genes.  Many of my cousins have taken the option to proactively fight the cancer by having preventative surgeries.  It doesn’t eliminate the possibility that they will go on to develop breast, ovarian, or prostate cancer, but it greatly reduces the odds.  What a gift from science to our family at large.  Advance warning, a heads-up.

I am in awe of the science achievements being made all the time.  Clever things well beyond the ability of my brain to comprehend or analyse.  But we don’t have to understand it all to benefit from the advances.  We, and our children, and our children’s children get to enjoy the labours of the lab technicians. And one day, there will be an answer to strange things like Dysautonomia.  It won’t be a mystery anymore, it will be as easy to understand as any other malady.

And people like me, like you, might even get better.

This piece of music is a composition made by my genetic testing company 23&Me.  It is composed based on my genes.  Ha!  The Sound of my Sequence!  Right, time to go and answer some questions: I’m going to go find out about that MTHFR!?