Going Up

oing up

For the chronically ill there are a lot of visits to the hospital. Not just admissions, there are also visits to specialists in hospital outpatient clinics. I am very familiar with the Level 6 clinic at Auckland Hospital.  I’ve been going there for years.  Gastroenterology, General Surgery and Immunology all run their clinics from the same place, the pathology rooms are just down the hall. The neurology clinic happens just upstairs. On a regular rota I have been seeing all of them. And today, I went for what I hope will be the last time. I know I can’t expect it will be forever, but why not hope?  So many of my wishes have come true lately, so many lucky things have been happening for me.

My immunologist is a quiet-spoken man. I’ve written about him before, he is a superhero, that kind of doctor who restores your faith in the medical system. After he invited me into his office he said in his measured voice “What’s been happening?”

“LIFE!” I enthused, “I’ve been busy living life!” His lips twisted in that lets-be-scientific way and he asked a different question, followed by some more. He looked at my file, shook his head and smiled. We discussed how strange (but welcome!) my remission is. He used a word not many doctors use: “miraculous”. And he used it without even a hint of tongue in cheek. He explained that they had searched high and low for an objective test that could unequivocally demonstrate the difference in my condition from before, to now. They just can’t explain it. I observed his wonder at my remission with mild surprise. I forget sometimes, what a different person I must seem to him, this new life fills me with joy, but I think the shock of the change is fading for me. Today, I’m wearing bright clothes, coordinating accessories and my face is fully made up. Even my nails are done, thanks to my new side job. The Rachel he met a bit more than a year ago sat slumped in the same chair, colourless, exhausted and nearly defeated.

“You were so symptomatic…” he reflected. “And look at you now!”

He agreed that I don’t need to attend clinic anymore. And that means no more Auckland City Hospital!!! I’ve never been so happy to farewell someone.

“Come back if you need us again, you may need to have another course every few years, but hopefully not,” he smiled.  Then he stood and said “…well then- give me a hug!”.  We hugged, patient and doctor. We hugged in that slightly awkward but full of feeling way, and I hoped that flowing through my arms he felt my gratitude. I stumbled over my words, something about wishing there was a way I could adequately…
“Just keep doing your good work” he said.

I grinned at him, waved, and walked out of that clinic.  Past all the chairs where people less lucky than me sat, round shouldered, weighed down by their health burdens. Past reception, where my file would be handled for the last time. Through the foyer, past the best barista in Auckland, who has served me more coffees while I’ve been in my hospital nightie than in my street clothes.

By the time I reached the carpark lifts, my heart was already soaring.
The elevator doors opened “…going up?” asked the man in the lift.

“I believe I am” I smiled, stepping inside.

Finding Family

That particular time, I was admitted to hospital through the emergency room. I’d been battling a pseudo-obstruction, which is when my digestive system behaves like there is blockage, but there is none. Basically all the nerve messages that are supposed to make me poo, stop working. And the result is a painfully distended belly; a cocktail of treatments and medications. I have to go into hospital if the distention lasts more than four days. It’s all part of Dysautonomia, the diagnosis that seems to define so much of my life.

Apart from being painful and distressing, a pseudo-obstruction is mildly embarrassing. Firstly because I’m in for poo related reasons, so there’s a lot of discussion about bowels with the nurses and doctors, all within earshot of my ward-mates. Secondly, because I look like I missed my due date for delivering a hefty baby.  My belly gets so huge. So if I walk, I waddle. I rub that tummy a lot, because it is sore. And of course, people passing think it is cute to see a waddling pregnant lady pacing the hospital corridors.  I get lots of comments like ‘Not long now, love!’ and ‘hang in there!’.  If only they knew that the delivery I was so desperate for was poop baby!  I’m sure they wouldn’t find it so cute then.  Perhaps they’d run for cover!

This particular admission, the hospital was really short on beds. So because of a new policy, made in some administrator’s office, somewhere far from the ward, I was put in a room with three male patients. At first, I was too distressed to really notice.  I waddled my way off my bed as soon as possible and began to pace.  Locomotion is supposed to help, so I was getting mobile. Every time I passed by my neighbour’s bed, the old guy would make a low whistle, and wink.  I observed that he did this when any female was in the near vicinity, but somehow, that whistle just for me, made me feel the opposite of my big bellied waddle. I felt like someone could see the girl behind my diagnosis, the real me. It made me feel special.

That first night, lying in beds a few metres apart, a curtain between, we both tossed and turned.  I could tell he was in pain too, but I didn’t know why.  Then, around 4am, he whispered
“-are you awake?”
“Yes” I whispered back, “can I get you some help?”
“No,” he murmured “I just can’t sleep.  Want to talk?”.
So Tony and I talked until the nurses came to do change-over.  He had just had a tumour removed from his groin. He was worried. He was 68, his family were a long way away in Italy, and he was afraid of the future. I was half his age, supported by a loving family and dealing with a neurological condition that affected my autonomic nervous system.  He told me I was lucky. Lying there in pain as my abdomen continued to distend, I found it hard to agree.  But I said I did. It’s all relative, right?
I knew I was pleased that I didn’t have his problems to deal with. He sounded so sad and alone.

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In total, I spent a week in that room of men. There was snoring, wind passing, belching and cheerful enquiries as to whether my bowels had moved every time I returned from the bathroom. It had its ups and it’s downs, sharing a room with all those guys. And every night around 4am; chats with my friend Tony.  We talked about life.  We talked about being sick.  We talked about the things we loved and the lives we’d left outside the hospital, histories, regrets, the highlight reel. We became friends.

The next time he was in hospital was a few months later. He called me and asked me if I could come visit him there. He sounded fragile. I made my way up to the neurology ward. I arrived and within minutes his neurosurgeon walked into the room. He wanted to talk to Tony.
“Oh, good,” the surgeon said to me, “we’ve been waiting for you to get here”, I raised my eyebrows to Tony, ‘what for?’ I asked him with my eyes.
“Ah… you’re my support person” he said, looking down at his hands. I was shocked. I’d only met him in hospital recently… did he really not have anyone else in his life who knew him better than me?  Who cared for him more than I did? For the next ten minutes I held Tony’s hand and listened with horror as his neurosurgeon spelt out the awful truth.  They had not managed to remove the additional tumour they’d found in his head.  He had weeks, not months.  It was unlikely he’d manage an overseas trip to see his distant relatives. He should get his affairs in order.  The young neurosurgeon looked at me.  Nodded.  Held my gaze for a little longer than was comfortable, and asked Tony if he had any questions. When Tony had asked all he needed to, the surgeon turned toward me, saying to Tony, “…and your daughter?”.  I was floored. “I’m not-“ I began to say, but then I just shook my head.  “No questions”.

In the weeks that followed, Tony and I stayed in close contact. I visited him in the hospice as his time drew closer. It became clear to me that he truly had no real friends. He cried a lot. Cried that he wouldn’t be able to see his elderly mother one more time. Cried that his wealthy brother was too busy to fly over and see him. Cried with regrets for all the things in his life that hadn’t worked out. He asked me to write his life story, and so I did, sentence by painful sentence, as he rasped or slurred his words. The tumour was beginning to take his ease of speech; his fragmented final memories were pieced together by this random girl he’d met in the hospital.  I emailed it all to his brother, but got no reply.

The last time I saw him, I kissed him on the forehead as I said goodbye.
“Sleep well” I said.
“…wish you really had been my daughter”  he murmured back. I think I saw his good eye wink. I’m sure I heard a low whistle follow me out the door.  I smiled then.  And that night, he passed away.

I am lucky. He was right. Lucky our illnesses brought us together in the strangest of ways.  Lucky I had the chance to meet someone who made me feel like a girl who still had something to give, not just a sick person.  And lucky that I got to spend time with another human being through the darkest most dignified days of his waning life. I will never forget the things I learned from Tony.

Life is short. Luck is relative. And family can be found in the strangest of places.

Jess Cochran: Mind and Body

Two weeks ago, another patient from the Dysautonomia community in the USA took her own life. Suicide is so hard to talk about, as is the mental illness that can make it appear like a good solution. Today in my Meet My Peeps guest series, Jess Cochran talks about her own battles with mental health.  I applaud her willingness to discuss such a difficult aspect of life with chronic illness.  Patients who suffer with long term illness may not always address their mental wellbeing in addition to their physical.  Some may be trying and not able to access the help they need.  It’s an area for vigilance, for patients, their friends and their families.  In this piece, Jess discusses the frustrations she experiences with mental health services where she lives in Melbourne Australia. Please find her helpful list of links at the bottom of the page.  If you are also in Australia, and you or someone you know is struggling, the links Jess has provided may just make the difference.

Have the discussion.  Make today the day you talk about it.  Life is a precious and valuable thing.

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I often get frustrated and upset, not

I’ve been on this trolley in emergency for so long now, watching the nurses flit backwards and forwards. Feeling a jolt in my stomach every time one passes by, hoping that there is an update…that finally I might get off this hard trolley. I was brought in by the mental health team to be monitored and assessed while they tried to get me a bed somewhere longer term. I’m quite used to processes like this; lying in emergency has become a regular thing over the last few years. Sometimes it is for monitoring physically due to heart trouble, or injuries from falls.  Sometimes for my mental health. I know the drill. But I had never been there for this long before.

Being brought in wasn’t a surprise, I had been struggling quite a lot mentally. There was the body breakdown I had been experiencing, mostly from my POTS (Postural Orthostatic Tachycardia Syndrome) but the pain had been eating away at me too. I have multiple conditions. I am usually an upbeat, chirpy girl. But I was was slipping into a low depression. I had reached out for help and this emergency stay was he first part of getting a mental health admission sorted. However I didn’t expect to be here this long.

That worker bee, whose job it was to seek out hard-to-find beds, had been working hard. But there had been no luck. Difficulty finding a bed wasn’t unexpected, but being in limbo for all this time in the emergency ward was. I’ve been dealing with the psych system from the age of 12; my first admission was in my first year of high school and then things had continued from there. I knew only too well how it all worked. Though I do notice, in the last few years it has become much more difficult.

Since my wheelchair came along my admissions to psych have become very far and few between. First I started to get turned down for admission with the main psych hospital where my treatment has been for 10 years.  That was on the basis that I am disabled and too ill (even at times when my symptoms were not so severe and my physical health stable). Sometimes it seemed like inpatient psychiatric units chose to not take on patients like me, with complex physical illness (even if managed) and in particular, mobility aids. It’s seems that people like me get put in the too-hard-basket. Perhaps they expect that some other place will take on the patient. So far I have only come across two psychiatric hospitals that take on people with mobility aids, both of them being private. This is extremely frustrating and not good news for people with mental health needs who fit in the disability category.

When I have spoken to many fellow sufferers of debilitating chronic illness and/or disability I was initially glad that I wasn’t the only one that experienced a massive fluctuation mentally.  I wasn’t alone and that made me feel a little comforted. I often get frustrated and upset, not just for myself, but for others like me. It’s hard to deal with the fact that sometimes, for some people it all gets too hard. Almost a year ago now I lost a very dear friend who had been battling with debilitating illness in similar circumstances; she found it so tiring and frustrating that nobody out there was able to ‘hear’ her… and most of all help her. She slipped further and further into depression with only a handful of people knowing it was happening. And then, just like that I had a call telling me that she had gone…another life lost to a system that doesn’t always know how to respond to complex cases.

In a society that has been talking about the strong links between mental health, physical health and emotional health I find it very shocking that things are the way they are.  Even with the strong messages out there, to keep an eye on yourself, to ask for help; there doesn’t seem to be accommodation to meet the needs of people with complex conditions who ask for help.

We shouldn’t have to be scared of reaching out for help in fear of being stuck in limbo in a busy Emergency ward, trying desperately to find somewhere to go, or even just to be put on the waiting list. We shouldn’t have to lose friends and fellow sufferers not so much because of the battle they are having with their body but the battle they are having with their mind and complications of a system that isn’t helping. Mental health care is vital for a person who is dealing with chronic illness. Whether that be support from friend, family, fellow sufferers or psychiatric services, it shouldn’t be the case that you have to put on a brave face all the time.

The time for change is now, its all very good for the medical teams to talk about caring for MIND, and body…but can they put this theory into real action?

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If you, like Jess, live in Australia and are worried about yourself or a loved one please contact one of the following for support:

Black Dog Institute
Information on symptoms, treatment and prevention of depression and bipolar disorder.

Carers Australia
1800 242 636
Short-term counselling and emotional and psychological support services for carers and their families in each state and territory.

Headspace
1800 650 890
Free online and telephone service that supports young people aged between 12 and 25 and their families going through a tough time.

Kids Helpline
1800 55 1800
A free, private and confidential, telephone and online counselling service specifically for young people aged between 5 and 25.

MensLine Australia
1300 78 99 78
A telephone and online support, information and referral service, helping men to deal with relationship problems in a practical and effective way.

mindhealthconnect
An innovative website dedicated to providing access to trusted, relevant mental health care services, online programmes and resources.

MindSpot Clinic
1800 61 44 34
An online and telephone clinic providing free assessment and treatment services for Australian adults with anxiety or depression.

Jessica Bee -Telling Tiles

Today’s ‘Meet my Peeps’ Guest Post comes from Melbourne. Jessica Bee is a dear online friend of mine, a social extrovert (rare flowers in the online world, those extroverts!) and a social worker.  After researching tirelessly, she embarked on the Levine Protocol and has seen remarkable gains with her Pandysautonomia, so much so that she has been able to return to part time work and is beginning to rebuild her life.  Jessica is generous with her heart, her time, her support and her wicked sense of humour. Here, she gets reflective and discusses her journey into illness, the impact on her relationships and the gains she has made. Oh, and the state of the tiles in the shower. I know! You can already relate!  Those tiles always tell the truth!

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Your body doesn’t give up the game at thirty. Thirty is buying houses and maybe having kids, and travelling and learning to bake. It is getting past the drinking until you fall over. It is realising your parents are just people like you and getting your cholesterol checked for the first time in your life. It’s breathing a sigh that you escaped your twenties without major organ damage, bankruptsy, untreatable STI’s or pleading insanity. Thirty is the calmness of finding the person you plan to set up house with forever, or realising you just want to set up house with two of every animal (and maybe a few extra cats thrown in for good measure).

For The Doc and I, thirty was meant to be about having babies and getting married and juggling careers and family.  We were meant to be having dinner parties, just to discuss that struggle for the rest of time. It was meant to be about life being easier, more predictable, and nourishing and fulfilling in every way. We were meant to have adventures, until the arthritis would set in.  After that, we were meant to creak along together until one of us forgot the other’s name, slowly fading away until there was nothing left of us in the world.

But then I got sick. I hit 30, and my body hit pause. The onset was sudden, as it is for many of us. One hour I was at the gym in my matching gym wear and shoes with complicated arch support; the next hour I was home, on my couch, and I could no longer stand. Then I was in an ambulance, in those same clothes, not knowing that I would not put them on again for almost 2 more years. They scratched their heads. Something was wrong, but they didn’t know what. They watched me and speculated and collected body fluids and blood. They dehydrated me and scanned me, prodded me and watched my heart through their wires. When that failed, they read the journal articles I brought them. I was in hospital so regularly; I was never sure where I was when I woke up.

I slept with the lights on for 6 months. I woke The Doc, panting and terrified, and he was left to decide if I had crossed over from ‘feet up the wall and wait’ to ‘ambulance’. When they told us what was wrong, it was The Doc who remembered the positive things- that it was likely (in reality, this was only a possibility) I’d feel much better within 5 years, that it would not kill me; that I would be ok. That he would be there by my side for the five years and then we would live our forever again. I remembered only the bad- I was sick. I was thirty and sick. I was thirty and couldn’t work. I was thirty and couldn’t give my partner the kids we had promised each other. I was thirty and I couldn’t even clean my shower.

If a doctor's time is gold, then(1)

He meets more of my needs than a man should ever have to, and this isn’t counting the ones he knows I have that I’m not yet aware of. He also, deep in his bones, believes that the only space in a shower that needs to be clean is a 30cm square where you stand under the water. True story. For a whole year the area outside of that 30cm square taunted me with my inability to give him this one simple pleasure that he wouldn’t even know existed- a secret between me and the world, something I did because somewhere in him I was sure he enjoyed the glisten of the tiles exactly like I did. And somewhere else in me I was furious at him for not just knowing that those 3-tone-mouldy tiles captured the complete failure of my body. Why couldn’t he just clean them, so I could stop being taunted as I gasped and groaned through every barely conscious shower?

Being sick like this, it is easy to feel like a terrible human being for being cranky because your amazing partner doesn’t clean the shower the way you want him to. It was only when I allowed myself the luxury of a normal relationship (including being cranky sometimes) despite being sick that I began to rediscover my worth. I couldn’t vaccuum- but I could give him undivided attention when he told me about his work. I couldn’t make him dinner- but I could scratch his back when he was falling asleep at night. And I sure could get mad at him for not cleaning the shower.

Most of my friends are gone. It’s a simple reality of being sick- you’re different, they are not, and simply put, they have no comprehension of what you’re going through. They might not care much, or they might not understand that in the bleak tarry mess of early days with dysautonomia their mere presence could have lead you out of some of the blackest waters you have ever known. Maybe they are scared of saying too much or not saying enough… or saying the wrong thing.

The luckiest thing that has happened to me (aside from somehow charming The Doc into my life) was finding other people who live like me. Words are stabbed into the keyboard like the slurring that ensues after two bottles of cheap red wine. Yet without the haziness, morning regrets and pap smears. Unless you have ever had a need to, you can’t begin to imagine the comfort gleaned from knowing that somewhere in your 3am, a friend is in her 3am too. Suddenly your world is no longer tumbling away, or even if it is, you’re tumbling together and by 4am you’ll have hit either rock bottom, or sleep. I don’t know how I would have made it through without The Doc- or my Dysautonomia group. Finding your herd and knowing you’re not the only one with stripes*.

The Doc still hasn’t cleaned the shower. I was one of the lucky ones who, for reasons unknown to the medical world, have gained function back after the first few years. I haven’t recovered, but I’m cleaning the shower, and somewhere, deep inside The Doc, he knows the joy of glistening tiles again.

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*The ‘stripes’ reference relates to a common saying in Medical circles.  When Med students are training, their seniors will often say with regards to diagnosing patients: “if it looks like a horse and it sounds like a horse, it’s most likely to be a horse… not a zebra”.  And so the zebra has come to represent patients with diagnoses that weren’t ‘the horse’. Patients with rarely diagnosed diseases sometimes refer to themselves as ‘zebras’ or refer to their ‘stripes’.

Property

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The sheets I lie on have HOSPITAL PROPERTY stamped all over them.  I wonder who else has slept on them, cried on them, died on them. The room itself is a perfect duplicate of every other ward I’ve spent time in at this hospital.  I could make my way to the bathroom with my eyes shut. The differences between wards always end up being the people. The patients, the staff, the tea lady.

Today I can hear great guffaws from the nurses’ station.  Brisk footsteps along the corridor.  A child trying out the acoustic echoes in the atrium outside my window.  The child is five floors down… the acoustics are impressive. Once there was a violinist who played down there.  He used to come and practise there, attracted by the same sound qualities that fascinate the yelling toddler.  The sound circles around the atrium and returns, fuller than before, echoes onto itself, folding, as though the sound itself could travel backward in time.

The nurse came in with towels this morning.  And a fresh gown. My room mate commented that it was the first time this week anyone had suggested a shower.  I showed her where the linen cupboard is, for next time she wants a rebellious, self-determined shower.  There are things you get to know when you are a frequent flyer.

I had my shower, sinking gratefully into the shower chair.  Wishing I had one at home.  I let the warm water cascade over my head for longer than usual.  Closing my eyes I thought about my home, my bed.  The peaceful quiet.  A song slid through my mind and remained there, playing on refrain for the rest of the morning.

“…in the easy silence that you make for me,
it’s okay when there’s nothing more to say to me
it’s the peaceful quiet you create for me
and the way you keep the world,
at bay
for me”

Dixie Chicks

There’s no place like home.  I feel like a big old baby, lying here in this bed, wishing I could go home. I want the nurse to come in and murmur something motherly.  Something definitive.  A time frame, a decisive sentence.  Instead we all lie here, suspended from the rafters by invisible lines.  We are the puppets on long strings, the marionettes who lie jumbled in a heap, waiting to clatter to attention when the consultant arrives. He stands there at the end of the bed. Discussing you for a few moments with his humbled registrars, before sweeping off to the next jumbled pile of limb, heart and head.  As he leaves, my pieces clatter back onto the bed, out of order, out of sequence.  I want to put them all together with superglue and snip the strings.  I want to walk out of this marionette maison, better than when I came in.   The longer I stay the less my body wants to work as a whole.  My pieces and parts falling further away from each other, disconnected, fractured, dismembered, disarrayed.  How will I keep pulling myself together?

I know I am the glue.  My own determination is what holds me together.  But it dilutes with every hour I am here.  Starved of the peaceful quiet I so need; the words of comfort or reprieve.  I look down at my hospital gown. Hospital Property is printed all over the blue fabric. I am branded like the sheets.  I am morphing into the patient puppet.  Voiceless, quiet, does-as-told.  It’s too hard to fight against the system.  It’s too big, too entrenched.  I close my eyes tight against the day and the thoughts and the words.  Against the visitors to the bed beside me; loudly eating fried food.  The teenager’s parents, hovering over her, worried about her poor head. Cradling it in their arms and cooing soft sounds into her ears. I wish they would all go away.
I wish I could go away.

Instead I stay.
Property of the Hospital.

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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