Lappy = Happy

 

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So here I am in bed, but not my own.  My knees make twin mountains and I stare at the standard issue hospital curtains.  They are a kind of mustardy yellow abstract check.  The perfect vomit inducing shade of puce.

I’ve been a less than model patient this time around.  I’m too jaded, too familiar, too experienced with the ways of the ward to tolerate some things.  It all led to me packing my things in the middle of the night last night, buzzing the nurse and telling her she had to take out my IV and my stomach port so I could go home.  She said she couldn’t do that and I was so livid.  I nearly ripped them out myself but I am too much of a wuss.  Instead I curled up, fully dressed, on my horrid hospital bed and cried.  Who was I kidding anyway?  It’s not like I could have even walked to the cab rank with my bags in my state.  I felt impotent.  Angry.  Overwrought.

I came into hospital on my Gastroenterologist’s standing orders.  When I can no longer manage my pseudo-obstructive tummy, or when I go into bladder retention as well as bowel, things get nasty pretty quickly.  I come in, hand over my letter and get shunted up to a ward to begin the process.  The process is usually more of what I do at home, more suppositories, enemas, more oral laxatives and subcutaneous injections. Catheterisation.  Then one day some magical moment that defies determined effort will just occur.  Finally.  Things will move.

This time around I’ve been a less patient, patient.  I can’t really explain why, except that there’s so much going on at home and I know I need to be there.  And there’s a snorer in the bed next to me so my sleep deprivation is making me grumpy.  It’s not her fault, but sleeping next to her is like sleeping next to a cement truck. So not much sleeping actually happens.  And I don’t have the patience for these hospital time frames.  I can’t wrap my head around why it needs to take an entire day to make a decision about getting me some antibiotics for my urinary tract infection.  Even effervescent sachets have to be approved by a doctor.  At home, at least I would be able to go to my medicine cabinet and help myself.   I have wished, over and over that I didn’t come in.  That I kept pushing through at home.  I should have.  Or why didn’t I pack the whole medicine cabinet to bring with me? I could have sorted my own problems in no time. Maybe.

Some things are changing though.  The nurses during handover are saying ‘Dysautonomia’ correctly.  The gastroenterology registrars know what it is.

And my hubster showed me how to make my phone into a hotspot so I can blog.   I’ve missed my lappy.  Being able to write keeps me happy.  Sorry I haven’t written anything particularly profound, inspiration is thin on the ground here (or maybe it is just my grumpiness getting in the way) but I wanted to pop in and say that I’m here!

Thanks for your lovely wishes.  Here’s hoping that I will have a crap day!  🙂

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The After Hours

Part Two :: A Day in the Life

The phone rings and beeps and gets answer-machined. My sleep doesn’t happen.
Dad calls in with a giant roll of paper for the kids.  They are going to love that!  I see big posters being created over summer, murals and magic pathways and city-scapes and maps. We have a cup of tea and catch up about the family.  His visit is short, but I am grateful. My stamina is low today.  I need to get back to bed before school pick up.  Just a bit more horizontal time to get me through the next bit of verticality.

The phone beeps again.  It is my friend Cami, she is popping in before school pickup.  But I am pleased, she knows me like family, so she bounds up the stairs and joins me on my bed.  She’s one of those pocket rocket girls who always has energy to burn. We chat, solve some problems in our micro and macro worlds and then, it is suddenly time to go.  I gingerly move to stand. My balance has been a little off today and I am wobbly walking down the hall. I sink into the car seat with relief. A fifteen minute round trip for pick up before I need to stand again.

school pickup

Zed is a box of birds at pickup.  He has much to tell me about his day.  We have a little chat about what the afternoon holds and I acknowledge that he has lots of girls to handle back at home. He says “Mum, did you know that you are the only girl I don’t have to handle?”.  Ha!  He’s a funny little fella! His little funnies are an infusion of happiness every day.  The drive is an easy one, school is close to home. I look through the windows of the car at a stunner of a day.  It’s a gorgeous city; a really pretty drive. The breeze tickles through the window when we pull up at the lights.  We’re nearly home. I park the car and pull myself up into a standing position.  The walk inside is short, I make it up the stairs using both hands on the stair rail. Zed and I tackle his homework while the girls do theirs in their rooms.

4 pm.  I look at the clock.  Zed’s homework is complete and signed off in his homework diary. That makes me feel some accomplishment. It doesn’t always get done which makes me feel ashamed. He heads off to build Minecraft Worlds with the girls. I have at least an hour before I need to start dinner, so I sink back into my bed. It’s such a relief.  I can hear happy noises coming from the kids.  I decide to start this second post about the rest of my day.

The hubster arrives, close on 5.  He wants to know if I would like him to cook the dinner tonight. I look at him gratefully.  It’s been a big day of pushing through. It’s a huge relief that he sees I’ve been struggling. I smile and thank him.  We have a little cuddle, a small chat. We’ve been talking about getting some help around the place, someone to help us with the things I am not managing, someone to take the pressure of him. We discuss a new plan that we are happy with and he stands and gets going with the dinner. I think I should take a picture of him doing that, to use for this post.  My legs are so painful as I walk into the kitchen.  Somehow lately my femurs and pelvis feel like they are made of elastic.  So weak and achey. It makes me wobble.  I lean on the door frame and take this picture to show you a man who deserves recognition, but miss his head from the shot.  Nevermind, back to bed.

school pickup(1)

And then I lie here, looking out my window on the late afternoon. I am so weary I don’t know how I can adequately describe it.  My eyes begin to droop and I am floating.  Drifting away on the afternoon sounds… more traffic, an aeroplane, the cupboards in the kitchen opening and shutting.  The most beautiful man in the world is carrying us into the evening. I sleep.

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Dinner is busy.  Five at the table. The Hubster, me, Bee, Zed and Em. CC is on study leave, so she is at the shops.  😉  Yummy food. I join everyone at the table for dinner.  Some nights I just can’t do it, but it’s a big priority for us, so even when it is really hard to sit upright, I push for it. Mealtimes are the catch up session, the time we all get together and learn about what the day brought us all. Sometimes we play word games or construct progressive stories. It’s hiliarious!  Sometimes I’m grumpy and it’s not so much fun.  Tonight was a middling kind of dinner time. The kids discussed the latest developments in their Minecraft worlds. Apparently Em’s virtual cat died when it teleported into a swimming pool. So much laughter about that, so I guess it isn’t as tragic as it sounds.  They try to explain to me that in Minecraft Survivor mode you can die unlimited times. I don’t understand the point of a survival game if you can die and then be not dead.  They give up trying to explain it.  Then Em’s parents arrive to pick her up. We have a reciprocal arrangement with them that helps us to manage the kids’ swimming.  Em comes to us on Wednesdays and her parents do the swim run on Fridays.  They are our neighbour friends.  Thank goodness for them. It makes so many things possible.

Tomorrow, the cleaner will come to give our house a proper clean. I look forward to Thursday afternoons, such bliss to have clean floors!  Sometimes I will go and sit in the bathroom after she has cleaned it just to breathe in the smell of the cleaning fluid.  It makes me happy to know it is clean. It won’t last long, but for that moment, it is perfect. We need to prepare for her, so after dinner I perch on Zed’s bed and try to wrestle his recalcitrance into the form of a cleaning robot.  I thought he’d be happier to clean up if we used the robot voices. But, no. There are knights and soldiers and motorised hamsters hanging out with elaborate cardboard sculptures and dirty socks. Time to get on it.  It takes us a long time. By the end of it, Zed’s stuffed toys and I have all gone to bed, long before the kids.

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We’ve got great kids; they’ll choose their own audio book and get themselves sussed for sleep time, usually.  Tonight Zed is particularly tired, so he melts down before bedtime; his Big Daddy picks him up and carries him into bed.  Bee gets herself organised for school before her later bedtime. Late Spring evening winds are tousling the branches of the tree outside my window. I am finishing this post. Mentally toting up the jobs I didn’t get done today. Berating myself for being so useless, for being such a drain on my husband. I check my thoughts and console myself with the thought that soon it will be time for my favourite cuppa.  The ‘after hours’ cuppa with my man.  I make my way back out to the living room and we sit/lie in comfortable companionship, tonight we’ll watch some Sci-fi we’ve saved.  The whole time we are watching I will be jiggling my feet and flexing my ankles.  It doesn’t help the peripheral neuropathy but I instinctively try to fix it by moving. The pins and needles and burning sensations will make it hard to focus. I will go to bed before ten. I will feel like I have been running a marathon all day.  I will sink into bed like I haven’t seen it for days, even though today it has been my cradling arms of a mother, the sanctuary of my sickness.  The place where I pass my days.  Hello again, pillow.  No need to ask you how you’ve been.

…and the lights go out on another day…

31 Days of Dysautonomia Awareness

October is(5)

Today is the last day of Dysautonomia Awareness Month for this year.
Wordpress thinks it is still yesterday, because they aren’t based in New Zealand.  But down here, the sun has been up on the last day of October for some time.  It’s already looking like a beautiful day.

It’s been a really huge month for me.  My first as a Dysautonomia Blogger. I appreciate anew the efforts that health activists go to all over the world to raise awareness and funds for rare diseases.

For any diseases.

And I am really, really tired.

So today I am not doing any big wrap up.  There won’t be blue fireworks and streamers and fanfare. I’m just going to thank you.  For noticing the things I posted, for taking time to discuss it with me, for reading the blog (!) and ‘liking’ all the awareness posts on the facebook page. For those of you who dressed stylishly in blue for Dysautonomia Awareness (Zoe! for instagramming her blue fashions #dysautonomiaawareness), who posted blue pictures for the #dysautonomiaawareness instagram campaign.  For Kylie, who made my hair such a pretty blue and Sarah, who spread the word on the business page of the Salon.  For Michelle, who shared my picture and poem in her blog series “Exploring Dysautonomia through the Arts”.  For Andrea and the editorial folk at Attitude Live, for the opportunity to get the Dysautonomia word out into the media. For all the blue nails around the place (especially, thanks to Zed who went ‘thumbs up for Dysautonomia’ even though in his seven-year-old world, nail polish is “for girls”). For my sister Tristen, who created awareness bracelets with me.  For Anya Bykar and Bea Chuan who donated bespoke jewellery items for the cause. For the girls who heard my plea and donated to the research fund.  Thank you.

Thank you.

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A Medical Menagerie

 

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

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Symptoms From Top to Toe:

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Medications and Treatment (pre-Immune Suppression)

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

 

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

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

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