The Fix Fixation

So once when I was teaching, a mother came to talk to me about her son. He was a plucky little kid with developmental delays.  He was popular in the playground and perplexed in the classroom. We’d been working hard on building his number knowledge, which was minimal when he first arrived in my class, aged 9.  He was just beginning to feel comfortable using numbers up to twenty; early stage numeracy.  Progress was steady, but laborious. When the mother arrived for our meeting, she looked through his maths work and launched:  “Where are the multiplication tables?”  she demanded,  “When I was his age, we were doing multiplications!   He needs to be doing multiplications!”.  It continued, in variations for the whole meeting. She was fixated on the idea that regardless of what he needed right now, what he was able to understand, what was appropriate for his stage of learning, multiplication was the fix because that is what she had done at his age.  I couldn’t get her to see the realities of her son’s situation. If we leapt into times tables before he understood his numbers he would never have a foundation to support later learning.  He’d have huge gaps in his number knowledge.  Gaps he would fall into, over and over as he progressed through school, risking falling further and further behind.  What she wanted for him was a solution. What he needed was her patience, and time.

fixating on the fix

We are a generation of solution-oriented people, aren’t we?  Got a problem?  Well, let’s solve it.  We’ll throw all our resources at it.  We’ll research.  We’ll leave no stone unturned. Surely there will be a way to fix it.  Because if it is broken, that’s very far from what it should be.  We’ll turn the problem over until we understand it from every angle.  Then we will stitch together some sort of plan. We’ll make it right.  Fix it. But what if you can’t? Is there room in our minds to accept a problem that has no solution?

Having a chronic illness that is poorly understood by most doctors has been a problem for me. I’ve been fighting now for a long time to find some answers, a treatment pathway. To find a way out of my difficulties.  I thought I was getting somewhere… and last week I discovered I am no further ahead than I was four years ago.  Is it okay now to give up trying to find a way?

Because that is what I am doing. I am so tired of scouring the horizon for information that might help. For the right solution. I have a diagnosis that I know a lot about, but I am no doctor. They don’t know a lot about it because they so rarely see people like me.  I am so tired of trying to strain to listen for the tempo playing in the minds of clever doctors. I am so tired of reading up and keeping abreast and willing a solution into being. I am so tired of carrying the responsibility of my own healthcare when I don’t have the qualifications or the brain power to do that. So I am putting it down.

Don’t be disappointed with me.  If you are one of those people who have messaged me and urged me on, thank you so much. If you are one of the people who hope that my progress will help your own, I apologise.  Right now I can’t refuel the engine.  I’m all out of determination.  I am going to use the little oomph I have left on smaller things. Hopefully, someone else somewhere will make some progress.  Here’s the baton, if you want it. Maybe some more research will provide the perfect conditions for action.  The sort of conditions that make doctors feel they can make decisions with confidence.  A double blind study somewhere that delivers the big a-ha. A mighty health crash that delivers data up the wazoo.

I never thought I would reach a point where passivity seems like the only choice left. It doesn’t mean I accept my illness. I never will.  But it does mean that I don’t believe there is a damn thing I can do that I haven’t already done. I think I finally accept that this system; all the difficult realities of medicine, do not work in my favour.  And I am going to stop trying to shift this immovable mountain.

If I had some objective data that made it all really clear, it would be easier. If I fell in a different percentage of Dysautonomia sufferers. If I lived in a different country, if I had a particular kind of insurance, if I could see a specific doctor in some other more populated country…. and on it goes.  I am just sick of it all.  Sick of being sick and yet having to fight for help. Why is it that in some cases, our medical systems require so much of the patient, so much more than they can realistically manage?

Also, looking at my current situation as objectively as I can, I do see the problem.  I’ve been fixating on IVIG (intravenous immunoglobulin) as the holy grail for some years now.  I thought, if my case was auto-immune and IVIG could address the rogue antibody action, I could get better. It seemed so logical.  It’s why responding so well to immune suppression filled me with so much hope! I wrongly thought it would help my case for immune modulation. IVIG itself; a blood product rather than a medication, a little bottle full of the antibodies of a thousand donors, seemed like it held the answers for me. Maybe it does. But I’m not likely to ever find out.

Because you cannot just ask for IVIG. It is in short supply worldwide. And it comes with associated risks which must be carefully weighed for each patient.   Here in New Zealand, the approval process is specific. My case would need to come before an approval board who want to see hard data that explains why I should have such an expensive and precious medical resource.  I am not eligible under their criteria. If any patient could have IVIG, just because they have a picture of systemic dysfunction, there would be a run on the blood bank.  No board could approve my case as it stands because of what that would mean for our supply. I get that. And I hate that.  What I would need is a strong letter of support from a neurologist who understands autonomic disorders.  I don’t have one of those.  And some blood screens to come up with a positive antibody titer. Mine is seronegative.  And a series of results from all the tests I have had over the last six months that give a compelling picture.  Mine do not.

So there really is no option for me. Giving up my fixation on IVIG as the potential treatment for fixing me is really all I can do for my own sanity.  I have to let go of it.  I have to pull myself back into this battered old snail shell and wait.  One day, something might happen out there that will help me. In the meantime, I will simply carry on. I’ll do what snails do during a drought.  Batten the hatches. Wait it out. I’ll take it as it comes, whatever that might be.  I will hope that my brief emergence into the sunlight during immuno-suppression might leave me with a soul tan. That my short time back in the race might leave me with some mental momentum.

So I’ll be in my shell for a bit. Don’t be mad with me.  Don’t feel bad for me.
And don’t be sad either, I’m doing enough of all that for all of us.  I’ll be trying to think of that Mum who so desperately wanted a fix for her boy.  There was one, it just took time, and it wasn’t the thing she imagined he needed most of all.

Just patience, and time.

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!

B(4)

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.

It changes how you see yourself, which(1)

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.

Find ways to tell people how much you(1)

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.

Find ways to tell people how much you(2)

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!

 

Uncharted Territory

I am so excited to be writing this post!

This morning I had my appointment with the immunologist who is overseeing my steroid infusions.  We went through all of my symptoms; what has improved since the infusion, and what has stayed the same.

I am able to drop one of my medications!

But that was only the start of the good news.  He is pleased that I have had such a positive response to steroids.  He wasn’t expecting it.  He said that if I hadn’t, my options now would be severely limited.  But I have!  And I am starting to really believe that a different outcome might be possible.

Taken as a whole, the last three weeks I’ve felt better than I have in the six years since I first got hit by a nasty virus (let’s call it the ‘thing’).  Even feeling a little better would have been a win.  But I have felt, overall, a lot better. Better even than an improved sense of wellbeing, is that some of my autonomic dysfunction is also better.  Of note, I’ve been less dizzy, I am no longer constantly nauseous, my post-prandial bloating is reduced and I have had better (though not normal) bowel and bladder function.  I can sweat in some places that I couldn’t sweat before. And my fingers, three of which on each hand, didn’t wrinkle in water before steroids, now do.  In addition, the neuropathic pain in my extremities, hip, pelvis and left leg are vastly improved.  We haven’t checked my pacemaker statistics yet to see if things have improved there, but that will happen over the next few weeks.

My specialist explained that this response really puts us in uncharted territory.  A positive response to immune suppressants, means that the ‘thing’ I have has been attacking my autonomic nerve conduction and pain receptors by switching on an immune response in the wrong place. This immune response is suppressed by the steroids.  Because the erroneous immune response is suppressed, my body is functioning more normally.  This may indicate that nerves we previously thought were permanently damaged may, in fact be okay.  Which in laymans terms means I might be able to improve my autonomic nerve conduction and pain with immune modulation.

It means I am a better candidate, on paper, for further treatment.  So the next step is for me to see all of the specialists in my team.  I will go back to the other immunologist, my neurologist, my cardiologist, my urologist and my gastroenterologist.   They will provide their opinion on my function mid-steroid therapy.  If they concur with the immunologist, that this steroid response is good news, there will be more treatment options available to me.  I am so full of gratitude and joy.  I am not sure if I can properly explain.

Instead, I will let the pictures do the talking.  The photo on the left shows me on a typical morning before immune suppressants. The one on the right, I just took, standing in my kitchen after climbing my own stairs;  after my appointment this morning.  I feel good.

Who's That Girl_

Me, that’s who!
The Me I am meant to be!

IMPORTANT:  Every patient is unique.  The causes of Dysautonomia are varied and complex. If you suspect that you have an auto-immune variant of Dysautonomia, please seek the advice of an Immunologist.  Their recommendations for you will be based on your own medical history and individual situation. I do not claim that Pulse Steroid infusions are a cure for Dysautonomias.  It is still early days for us in my six month course of this treatment.  Continued efficacy of this course of treatment is our hope, but as my specialist said, we really don’t know what will happen next.  We are thankful that it opens up further treatment options.  We are particularly hopeful that the 20% chance of remission will be odds that fall in our favour.   And of course, I sincerely hope that if you have been battling with Pandysautonomia in a similar way to me, you will be able to explore what this might mean for you.  I wish you all, at the very least, the same experience I have had so far.

Life is a beautiful thing.  Don’t give up!

Getting Grown-Up

Happy New Year

Every New Years my hubster and I sit out on our balcony after the kids have gone to sleep.  We eat fancy cheeses, oat crackers, pepitoes and plump olives… and my favourite; grilled artichoke hearts.  We toast another year. We talk about how it has been and stubbornly focus on the achievements, congratulating ourselves for what we have managed.  Then we plan the next year together. As the years pass and my body presents more challenges, we’ve been surprised by how much we can still do.  Together.  2014 has been a good year for us as a couple. It’s been good for us as a family.

It’s taken all year, but our minor renovation downstairs is complete. Happy sigh! A good year for finishing things, tying up loose ends.  Getting more organised.  We are starting to feel like grown ups. I turned forty this year; next year, he’ll turn fifty.  Takes a while, getting to this grown-up feeling!  Once upon a time, we used to go to New Year’s Eve parties.  That’s just not feasible anymore, and you know what?  We don’t even miss the sparkle and excitement, the social stress, the late night, the hangover.  Last year we rang in the New Year at 10pm and tucked ourselves up in bed.  It was perfect.

We have a decoration on our tree, it is a hanging, lidded gift box, crammed with tiny notes.  This year, when we were decorating the tree, my son asked me what all the folded pieces of paper inside were. He had never noticed them before.  They are all our plans for all the New Years. Written in tiny script, hopes and goals and aspirations, folded into the smallest possible wad and added to the years before.  I showed him and his interest skipped off elsewhere, the way it does when you are seven and Mum shows you something less magical than you expected. We, however, always look at previous years nostalgically when we add a new one! It’s amazing how many of them have come true.  Is that because we wrote them down? Planned for them?  Is it really that simple?

What are you planning for in 2015?

Next year holds so many unknowns for me.  I am supposed to start IVIG treatment.  That will run for six months. I’ve been accepted into a leadership programme, for people who show promise as a voice for social change.  For me, that means really working on using my voice to promote understanding of invisibile illness and invisible disability in New Zealand, building leadership skills, increasing my network.  It’s an incredibly cool opportunity, but I don’t know yet if the first will preclude me from the latter, I’m waiting for some dates to know for sure. I feel like I am suspending my excitement in case it doesn’t all fall into place.  But, OH!  What if it does?!

What is certain for me about next year is that I will be wife-ing, mothering, writing, and getting involved with life in as many ways as I can.

I’ll be spending a bit of time (as much as I can manage) out in the countryside, where my daughter rides; drinking in the goodness of green paddocks and the sweet smell of horse feed.  I’ll be stroking the warm neck of her wise and good pony and watching my girl follow her bliss, hair flying out behind, grin on her face.  It’s the best soul food on the planet, watching your children do the things they love.

I’ll be wrapping my arms around my little guy as often as I can. I feel that he is moving on up into a new stage and the little boy sweetness of his cuddles is making way for boundless, urgent energy. He’s a big kid now, a purple belt in karate, a story-writing, poison-ball-tramp-champ-justice-leaguer. He’s growing up and I am treasuring the last vestiges of my baby boy.

I’ll be working on some more pro-active health measures.  I want to improve my gut motility somehow, so I am going to work on what I feed it, I’ll be giving my intestines a rest in the very early New Year by starting a liquid diet.  I had a gastrograffin study which showed, when compared with my recent gastric emptying study, that liquid transits through my intestines with much more ease than solid food. So goodbye cake! I’ll be souping it up instead (know any great soup recipes?). I also want to do all that I can for my general mobility and my fitness, so I am going to the rehab centre to work on my exercise program. I’m excited and hopeful about what that might do.

I’ll be here, blogging about my life with dysautonomia, and all the other things besides.  I’ll be connecting with you over on my Chronic-ills of Rach facebook page. I’ll be emailing, advocating, writing and doing the work I have been given to do.  There is so much more of it.   Hang around with me, I’ve just got this feeling that 2015 is going to be a good one!

How do you celebrate New Years?  Can you?  Do you have little rituals too?

Move over Marvel

Yesterday was my first day back home after my trip.  I’d been feeling less than super.  My bed and I reacquainted our special friendship and I spent most of the day hanging out there.  I got up around time for school pick up, and just then, the phone rang.  It was a private number, I sighed …I didn’t have time for another one of those telemarketers.  I picked up the phone anyway.
“Hello?”
“Hello, is that Rachel? It’s Richard Steele. Immunologist.” 
Imagine that, said in a Superman voice and you are right there in that moment.

I sat down.
We’ve been waiting to hear more from the two immunologists I went to see a few months ago. I have an appointment coming up soon at the hospital to discuss The Plan. Last appointment, we talked about high dose steroids and IVIG.  IVIG has yet to be approved. He continued, “-has anything happened?” well now, there is a leading question!  My brain travelled instantly down the path usually accompanied by that question.  Why was he asking about my toilet habits? Was I supposed to do something in particular?
“…have you had any bloods or other testing done?”
Ah. Not about poo then.  The whole world is not about poos after all.
“No, not yet”
He apologised for the delay (have you ever had a doctor apologise for delay?!) and said he would send me through some new blood forms forthwith, get me referred for another Tilt Table Test and a Gastric Emptying Study.

I think they’re a bit like superheroes, these Immunologists I am seeing. 
Not in a crazy way, more in a “Woah… those guys are clever” kind of way.  It’s great to have lovely thoughts about doctors.  So often the experiences of Dysautonomia patients with doctors leads to other, less happy thoughts.  So I’m rolling with the loveliness.  If, in the end, they can’t help me, I will always be grateful that they have tried.  It’s all I need; people to try to help.

So those are the things I am looking forward to in the next wee while.  The tests are to establish baselines for comparison.  My last Tilt Table Test was in 2009.  It was a scary event, because it was when we learned that after 9 minutes of standing without the ability to posturally compensate, my heart stopped.  This time, I’ll have my pacemaker on board, but it is hard not to be nervous after the last time!   I’ve never had a gastric emptying study done, but I am interested to see what the findings are there.  Post-prandial bloating is a daily occurrence for me, so some data would be interesting.  The blood forms, I am also intrigued by.  I wonder what tests they have ordered?  Will they be different, or the same as I have had before?
Fascinating.  Scary.  Exciting.

Stay tuned for the next adventures of The Man of Steele (see what I did there?) and his accomplice Rohan The Illuminator.  Here’s a little sketch I did of them.  🙂

10455837_10152876533295815_1543339797563551686_n

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.

10608780_10152785429815815_3726456775383286132_o
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?

Treat Me

Last year on the 24th October, I wrote a post for the Living with Bob blog.  Michelle hosted guest posts on her site to mark awareness month for Dysautonomia. It was the first post I wrote about my frustrations with a doctor. I usually get along great with doctors, but occasionally their pre-conceptions get in the way.  Sometimes it is their egos or their ignorance in the way.  This afternoon I saw a very clever and very personable immunologist who specialises in neuro-immunology.  I didn’t even know we had such a rare-feathered-fella in New Zealand.  But we do!

He took such a long history from me that I had to ask if I could lie my head down on his desk!  A few years ago I would have been too embarrassed to ask if I could do that.  But I’m a bit more vocal these days.  He was a very good doctor.  And he even unlaced one of my converse high tops and pulled it off my foot when I needed to get up on the table to be examined(!)  Far out.  Didn’t know that was included in the service!  One bloke on each foot, taking off my shoesies!

The news is that he wants to try me on a six month course of immune modulation therapy.   He is just getting all the paperwork in order and discussing it with his colleague.  He’ll get back to me.  I had to double check with my hubster as we left that he really did say that.  Yep, he really did.  I was amazed too, at the beginning of the consult, when he asked me why I was there, I explained that I have a list of possible causes and I can’t rest until I know I have checked them all out.  He thought that was “fair enough”. It amazes me that some doctors understand why we continue to search for answers and others don’t at all.  Then he went through a paper with me from one of the world’s best Autonomic Neurologists.  Steve Vernino.  He knew who Dr Vernino was (that’s a first)!

I think when I wrote a few weeks ago: ‘catch me I’m falling’… I got sent a few doctors to do just that.  I am so grateful.  For me, but also for others with Dysautonomia in New Zealand. If this story has a positive ending, it will raise awareness amongst the medical community and make a difference for how patients are treated here.

This is my piece from last year:

Sweet Thing

source: worldsweetshop.blogspot.com
source: worldsweetshop.blogspot.com
 

In the past couple of years, my care has been transferred from my Cardiologist, to the General Medicine department of our local hospital.  My General Physician is a specialist doctor who coordinates the other specialists who care for me and they all consult with him as the primary doctor who oversees my case.  In addition to the General Physican, I have seen a Neurologist, a Neural-Opthalmologist, a Gastroenterologist, a Cardiologist and a Urologist. They all see me through their out-patient clinics unless I happen to be admitted for something. I really like this model.

Until recently, my Main Doc was a really lovely, really clever, experienced physician who was involved, interested and not afraid to admit that he needed to find out more. He wasn’t threatened by me, or my lists, my folders or my frequent email attachments.  He wasn’t even threatened by my six foot frame and it’s wobbly instability.  He understood that I wasn’t trying to be an annoying patient.  I was just trying not to be a patient at all. He suspected that I have AAG.  Autoimmune Autonomic Ganglionopathy.   The idea is that the immune system has turned against the Autonomic Nervous System in error.  It begins to pick off autonomic ganglia, preventing the usual messages from getting through, throwing out homeostasis. And this thinking meant that he was open to the idea of my problems being treatable.  That concept, for me, for anyone facing a progressive illness, is the equivalent of being a kid in a candy store. Treat me!  It’s the nirvana of chronic illness. The delectable hope! Shiny, sweet gorgeousness!

But oh! There I was in the candy store, staring up at the jars, salivating. And it occurred to me that I couldn’t just buy what could make my dreams come true.  I didn’t have any currency. The benevolent gentleperson with all the buying power was about to leave the store.  And he did.  The hospital moved him into another department and transferred my care to a new General Physician. One who hadn’t gone through the lengthy discussions with me about the candy and the possibility that maybe, I’m worthy of having a bag of bulls-eyes (immune modulation therapy). My new Main Man prefers the sit-and-wait approach. Main-Squeeze and I at first, politely inferred; then, referred directly to the last doctor’s findings, suggested and finally pleaded for some more action, some attempt or nod towards trying.  He just took off his glasses, said we need to face some realities. Sat back and said that he would like to simply ‘watch’ my progression. Candy shop shut.

The research in this area shows that if indeed I have AAG, the nerve damage that continues to occur over time is unlikely to be able to be reversed.  So I don’t want to wait while he observes more progression.  I want to arrest the progression.  I need to, in point of fact.  Because, like all of my fellow sufferers, I have a life that I need to get back to. A husband who wants a partner in every sense of the word.  Children who need their Mum in ways and at times that I can’t always be there for them.  And a host of other brilliant things that are out of my reach with things the way they are.  Things that would have been, if I hadn’t got sick.  I’ve got some potential to fulfill.  And although the new Main Man doesn’t know it, I am worthy of the attempt.  Aren’t we all?  There aren’t very many of us.  It’s not like there’s going to be a mob looting that candy shop.  And we are very polite, on the whole.  Except for inside our imaginations, where occasionally, we slap people who don’t want to try to help.

I don’t have the antibodies which prove AAG.  In fact, 50% of AAG sufferers don’t.  But there is still a good chance that I would respond to immune modulation therapy.  So, I am standing in the candy store, alone.  Looking up at that candy.  Just wishing that this new doctor would come striding in and say “A bag of bulls-eyes for the little lady. Quick, now, don’t delay!  She needs them!” And maybe, you know, it could happen; he could treat me.

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P.S The doctor who is helping me, knows about me because I kept pushing to see someone.  He’s the one who strode into that candy store on a wave of good connections.  Somebody knew somebody who might be able to help.  He rode in like a gunslinger from the wild west, a justice rider. And I can’t help but think, if I had left the store, or tired of asking for help, I would be back where I was, making no progress and suffering my slow decline. But I didn’t stop asking.  I didn’t stop pestering.

Is there someone you need to ask about something?  Don’t give up, don’t settle.  Maybe you were supposed to read this today.  It is exhausting keeping up the fight.  But life is too beautiful not to try.