A poem about my struggle with side effects written in 2018 after I was discharged from Waimarino

Love is my worst enemy

I have been on antipsychotic medications for years.

Gradually the side effects took over.

They got out of hand,

a major concern.

I couldn’t even walk properly.

I could bear anything

except not daring to hold my grandson

in fear of him falling down, being hurt.

No! Something had to be done.

My ex-GP was not helping,

so I took things into my own hands.

Without letting anybody know

I had a plan,

I would reduce the medication bit by bit

until I could stop taking it.

When I received good results,

I would gain credibility.

I had this all planned out.

I kept a journal

documenting my mood

and my physical wellbeing

for the psychiatrist’s viewing.

After a month without medication,?

I began to gain back balance.

I didn’t have reflux.

I could focus.

My memory improved.

Everything pointed to a good beginning.

This plan included

getting help from my ex-psychiatrist,

someone who had helped me greatly

in my recovery.

The plan matured.

I tried to contact my ex-psychiatrist.

Some days passed

with no reply.

Still waiting.

Full of confidence.

That night, at my daughter’s place,

we were happily gathered,

dancing, cheering.

Then I put a stop to all the joviality

by exposing my secret.

They all,

my husband, my daughter, my son-in-law,

FREAKED OUT!

Angry words

came out from every mouth.

The Pandora’s box was opened.

Harsh words, accusations, pointing fingers

rushed out.

It was one of the worst times I have ever experienced.

To stop them from worrying

I offered myself up for slaughter and

sought out the help of the crisis team.

I arranged to see the hospital’s psychiatrist.

I was still hopeful.

They are experts.

Surely they’ll understand.

I’m in good hands.

Finally, they gave me an appointment

after delaying twice.

I knew my file would be huge

because it had been more than 30 years

since I was diagnosed with schizophrenia,

only to be told later?

it was bipolar disorder.

Surely the assigned psychiatrist

wouldn’t see the whole picture.

Very intelligently I wanted to fill in gaps.

I told them what achievements I have had.

I told them I haven’t had depression for years.

I told them how motivated I am.

All in all

I told them how I have recovered,

information I thought would help.

But they were terribly busy.

The backlog of patients has always been huge.

All they wanted

was for me to resume taking medication.

Then my file would be closed.

They could move to work on other patients.

After three consultations,

they thought it’s time to take action,

to force me back on to medication.

After rejecting them,

the psychiatrist applied to put me

under the Mental Health Act.

The cheeky psychiatric nurse

said stupid things,

asked me to wait in the room

for security guards.

I was calm and clear headed.

My question was,

‘Will I be taken to the hospital now?’

She said, ‘No, it’s just routine.’

A staff member came in.

I didn’t really know why.

To make sure I wouldn’t fly?

However, the staff member and I

held an interesting and intelligent conversation.

Finally, someone did come.

Not the security guard,

but a consultant and another two staff.

I was read my rights.

The consultant listened to my story,

also to my husband’s.?

After more than an hour’s consultation,

he turned to my hubby and said

‘I have no grounds to put your wife under the Mental Health Act.

I have no grounds to enforce her to take medication.’

He also said to me, ‘I hope time will sort things out for you.’

I felt gratified.

Yes, time.

It’s time that I need, and not meds.

After that the psychiatric nurses called

from time to time

to check on my sleep,

to check on my wellness.

I needed to see psychiatric nurses

and consultants every now and then.

I repeated my story

time and time again.

The story was consistent

because I wasn’t lying.

They were satisfied.

My hubby was with me

at each of these meetings.

To my dismay,

he was drowning

in the idea that as long as I was taking meds

I’d be okay.

Harsh words, harsh attitudes

came my way every day.

I know he loves me and he’s worried,

but love turned out to be my worst enemy.

My loved ones worried

because they love me.

But all they wanted?

was for me to resume taking medication.

They disregard the horrific side effects I am facing.

I got angry.

I fought with them all and

stuck to my belief.

All this struggle

put pressure on me,

but I held on.?

I was strong.

After I convinced the consultant

that I was OK

without medicine,

he told me if they discharged me,

I’d be under the care of my GP.

He even said

He’d arrange a meeting

for me to meet my ex-psychiatrist

since I trusted him so much.

I was greatly relieved and

thought I would be discharged soon.

How wrong was I!

One day

after being torn apart

by my loved ones at home,

which I had hoped to be my sanctuary,

a place to recuperate,

I decided to move out,

at least for a while.

It was at an exhibition

held in my school, an NGO.

I tried so hard to find a place

to stay but didn’t succeed.

I offered to provide entertainment

by playing on the piano

to attract visitors.

I played, not from any composition,

just let my fingers go

and depending on my ears.

I didn’t know I had this talent

until then.

I can keep playing

for as long as I want to

with no ending

and starting on any key.?

And I only passed grade three

in piano training.

What went wrong that day?

I thought I was discharged.

I was so happy.

I posted on Facebook.

What went terribly wrong?

My daughter sent messages out

telling everybody I was not OK.

With anger.

With heightened emotions

built up.

When it was time for the school to close,

I lost control.

I didn’t want to go,

but I had nowhere to go.

I insisted that the psychiatrists

come and see?

how a genius works.

My husband wanted to take me back to the hospital.

I refused,

standing across the road.

It was raining.

I was screaming.

He was on the phone talking to whoever.

I didn’t care.

‘We can’t come as the protocol does not allow it.’

That’s the response

from the psychiatrists.

I insisted.

Finally, I said they had to get the police to take me.

Two policemen came.

One talked to me.

I told him my story.

They talked me into going with them.

They took me back to the police station.

What they put me through,

like searching my body

to make sure I did not hide anything

which I could use to harm me,

was humiliating.

I was tired, agitated, provoked.

I waited for hours

before two teams of psychiatrists and nurses arrived.

I talked to the first team

who seemed kind.

I told them my story.

I told them

all I needed was a place to stay

for a couple of days

till I found a place,

because I did not want to go home,

which I considered a sick place.

They seemed sympathetic

and I was hopeful.

The second team came.

After talking to me,

they at once put me under the Mental Health Act.

I was taken to Waitakere Hospital.

When I got there,

they put me in a room.

I had a good night’s sleep,

woke up and gained back my senses,

but I had already jeopardised my plan.

During the stay in the hospital,

I fought with the psychiatrist

over medication, over his diagnosis.

With a cell phone,

I searched for information.

I checked the symptoms of bipolar disorder

in the DSM-V.

Armed with research and knowledge

I debated with him.

At each meeting?

I asked him questions

which he wouldn’t or couldn’t answer.

All the more I believed that I was right.

In the hospital

I talked to patients.

Every time I was with a patient

a senior staff was nearby,

listening to our conversations.

Then he told me

I have the power of connecting with patients.

So what?

I was still not discharged,

not allowed

to stop taking medication.

But I made a lot of friends,

staff and patients,

via poetry, music and art.

It was time for me to leave the hospital

as I had nothing more to do

to help the others,

and I was bored.

I succumbed to resuming medication

and left the hospital.

I became an outpatient.

The dosage was high.

All the side effects resumed,

and worse than before.

I was assigned

a new psychiatrist and psychiatric nurse.

I told them my worries about the side effects,

how bad my balance was,

the problems with my heart,?

the diabetes,

my immunity,

how my life would be shortened.

I was fighting for my life in actual fact.

They did not listen.

My psychiatrist refused to acknowledge

all these were side effects,

not just ailments of old age.

The psychiatric nurse told me I’m very intelligent,

but for God’s sake,

why then didn’t they listen to my plea?

In the meantime,

I researched and studied my case.

I studied Open Dialogue theory.

I studied about psychosocial strategies.

I studied mindfulness.

I studied Cognitive Behavioural Therapy.

I pleaded my psychiatrist to reduce my meds

in a safe environment,

giving her my sound evidence.

She wouldn’t listen.

She wouldn’t even see me

or answer my letter.

The psychiatric nurse argued with me.

She told me mental illness could not be cured.

I had no other option

but to make complaints.

I complained about the irresponsible neurologist

who rejected my psychiatrist’s request?

to give me an appointment

to test if it was Sodium Valproate

that was causing my loss of balance.

To which he wrote back

and refused my psychiatrist’s request.

I made a complaint to the Health and Disability Commissioner

about my psychiatrist,?

giving sound evidence.

They took my case.

Finally, my psychiatrist decided to discharge me

from the Mental Health Act

and left it to me

whether I wanted to take meds.

That very night

I stopped all meds.

My GP told me to make an appointment to see him

in eight weeks.

I learned that it would take at least four weeks

for me to detox.

So, during those eight weeks

I kept a journal,

documenting my sleep, my mood, my physical wellbeing.

Before seeing my GP I emailed it to him,

so he could see

I don’t do things impulsively.

I do plan.

My blood tests after stopping the meds

had never been so good.

All my abnormalities became normal.

Even my uric acid level,

though my ex-GP had bet her life?

it was gout

and not Olanzapine?

which heightened the uric acid level.

But, since stopping the medicine,

I experienced verbal abuse every day.

And from who else

but my husband

who loves me?

And all my loved ones agree with him.

Yes, they all love me,

but they refuse to walk with me

through my most difficult times.

They believe I am in good hands

under the care of experts.

They refused to read information

I sent them

to help them understand

my situation.

Every day I was under pressure.

Not happy, I would not rest my mind.

But I learned important things

like being independent,

taking care of myself,

gaining back my confidence,?

making good decisions.

When I was well enough,

I went back to Hong Kong?

to visit my mother.

I could even take her on a cruise

all by myself.

My balance was good.

My memory was good.

My focus had never been better.

But I wasn’t welcomed by my family,

except my mother.

She loves me.

I love her dearly.

But I began to be honest with her?

for the first time ever,

which angered her,

and she was disappointed in me.

However, she still loves me,

and I love her just the same.

But I was not happy.

I couldn’t sleep.

I couldn't eat.

I was losing weight.

I cried a lot.

I longed to come back to my hubby

so I could have a shoulder to cry on.

I was in a terrible state

both spiritually and physically.

I came back.

But on the way home from the airport

we started to argue heatedly.

I was determined to leave him,

but for the first time ever

he said sorry.

Yes, for the first time.

I once again forgave him.

I needed his love.

But I was still unhappy.

He was not much help.

Instead I felt pushed into misery.

I couldn’t eat. I couldn’t sleep.

I lost seven to eight kilos.

Until one day I decided to leave him.

I ran away.

I felt relieved.

I was happy.

I thought now my love for him had died.

I was set free.

I planned to look after myself.

That night in a motel,

I had a short relapse.

I called an ambulance

which took me back to the hospital

where I spent roughly 50 days.

When I was discharged,

I gladly went back

to my husband’s embrace.

What happened during the 50 days

needs another tale.

What has changed?

My husband’s attitude.

He has become a loving husband,

and we argue much, much less.

I’m a much happier person, and so is he.

Despite the side effects

I take my meds.

My psychiatrist is happy.

My loved ones are happy.

Though my conviction?

is different from my psychiatrist’s,

I listen to her.

It makes a difference to my world,

I choose love over anger,

which helps me bear the physical discomforts.

I am waiting patiently

for the day they are convinced

of my beliefs.

There are better ways

than just antipsychotic meds

to help patients recover,

and I intend to work on this.

I vowed at my book launch

that I’ll spend the rest of my life

to help the mentally ill and the depressed,

and this promise I will keep.

I am lucky to be loved.

For every recovery

there has to be support and love.

I have reconciled with my psychiatrist.

I trust that she is fulfilling her duties.

No matter what my belief

my life has become better and better

?

and I look forward to a bright and happy future.