Thursday, 4 February 2016

Secondary infertility

Or - the post I hoped I'd never have to write.

The infertility charity RESOLVE defines it thus:
"Secondary infertility is defined as the inability to become pregnant, or to carry a pregnancy to term, following the birth of one or more biological children. The birth of the first child does not involve any assisted reproductive technologies or fertility medications."

It doesn't seem to be talked of as much as primary infertility, or the decision to remain child free.  You have a biological, naturally-conceived child, so how can you say you're infertile?

Well, yes, on the face of it I don't exactly look infertile, running around after my three year old clutching baby wipes and snacks.  But infertility has been in my life ever since we started to try for another child two and a half years ago.  And now this merry dance is over: my ovaries simply don't have any eggs left in them.  Elvis has left the building.

We are left to grieve.  To wonder Why? To blame ourselves and each other.  To be angry at the doctors for giving us so many promises and false hope.  To laugh at our younger, contraceptively-minded, selves.  To hold our son tight and tell him sorry, so sorry, oh how sorry we are that we can't give him a brother or sister.

Since I last wrote about our longing for "Number Two" we did indeed decide to give the fertility clinics a shot.  We naively thought our odds were good, given how awesome our kid is and how compatible our gametes clearly are.  A few false starts later and we finally got down to the IVF business a few weeks ago.  From our first follicle monitoring scan I knew we were in trouble.  The numbers did not bode well: two, possibly three, developing follicles in the right ovary and none visible in the left.  Ok, perhaps they are just slow to develop?  No, by the time the consultant decided to do the collection we were still talking about a maximum of three follicles.

As I learnt to my bitter disappointment today, follicles don't always mean eggs.  They couldn't find a single one, and they aspirated every last inch of my two ovaries.

I don't want to put anyone off having IVF treatment.  The clinic could have handled things better, but I am glad we gave it one last shot, and at least I can lay it all to rest and accept that another biological child is not in our future.

We are going to take our time to regroup, to recover.  And then we will pick ourselves up and count our blessings and look to the future.  Who knows? That future may even involve a child already born, who could be looking for an adoptive family in years to come.

Sunday, 31 January 2016

Balance sheet brain

My friend and mental health colleague has written this insightful and heart-breakingly honest blog about her bipolar disorder: 

It is a fantastic read, and has inspired me to write down a few of my own thoughts on bipolar, and how it has shaped me.  I was only diagnosed with bipolar in 2013 (following an episode of postpartum psychosis), but I believe it has been with me throughout my adult life.  To be perfectly honest, for most of the time, I give it very little thought.  Why should I be defined by a diagnosis?  I'm a person (a very flawed and imperfect one!) and not a collection of symptoms listed in the DSM.

But, from time to time, I have to accept that bipolar becomes me.  Think of it like a child's see-saw: for much of the time the see-saw gently bounces up and down, the forces acting upon it are balanced and benign.  Gentle ups followed by gentle downs.  And quite a lot of time spent barely bouncing at all.  Bipolar becomes me when the control of the bounce has gone: the see-saw swings wildly from ground to sky and those once-happy tots are in grave danger of bouncing straight out of their seats.

Another useful analogy is the accountant's balance sheet.  Assets and liabilities.  

"Fixed assets" are those elements of my brain which are basically permanent: my genetic inheritance, the nurturing childhood I enjoyed, the relationship with my son and husband, the positive elements of my basic personality.

Conversely, "long term liabilities" are a constant balancing force on the other side of the equation: my innate selfishness, my notorious short fuse, the long-lasting after effects of psychosis and mental breakdown.

Heavy stuff.

But the more interesting aspect of the balance sheet analogy is the current assets and liabilities: those things coming in and out of my life, impacting my emotions and feelings and behaviours in an immediate (and usually temporary) way.  In a person who doesn't have bipolar disorder, these ebbs and flows tend not to have too many untoward effects.  But for a person with bipolar, they can have profound consequences.  

On the "asset" side:
- financial overconfidence
- workplace arrogance
- lowered inhibitions
- impulsiveness 
- thrill seeking.

All things which feel wonderful at the time (hence landing on the asset side) but which can quickly become "hypomania" and perhaps even mania or psychosis.  I have a long list of people to whom I really ought to make amends: old friends, ex boyfriends, work colleagues, former managers, family.  (I don't include the credit card companies which must have made a small fortune from the constant high-interest debt I serviced for over ten years).

On the liabilities side:
- Low self worth and self esteem 
- Anxiety
- Sadness
- Paranoia.

These are all the R easons why bipolar disorder is a "disorder" and not some Limitless-style magical way of being.  Feeling sad, low, unworthy, are all normal human emotions.  But in bipolar disorder it seems that the thought processes going along with it are an extreme: catastrophic, overwhelming, fearful. 

The cumulative effects of all these current "assets and liabilities" then become the long-term and fixed aspects of me.

I won't ever not have bipolar disorder.  I will always have this balance sheet brain. 

But I can certainly learn how to manage it, how to account for it, and (apologies for stretching this tenuous analogy to the very limit) be my own book-keeper.

Happy "Time To Talk" day!

Thursday, 14 January 2016

It shouldn't have to be this hard...

... But it is.

Today I (along with my wonderful friend and fellow campaigner Eve Canavan) gave another television interview, about perinatal mental health services.  The topic is of great interest currently, with the EastEnders storyline and all the associated coverage.  The team from BBC Breakfast, putting together a segment for Tuesday 19 January edition, were interested to know how women like Stacey may be treated, and what barriers to treatment they might face.  We spoke to the journalist at length about what had happened to us, and what we would like to see happen in the future.

Eve's story is particularly shocking.  You can read it here: https://smalltimemum1.wordpress.com/2015/11/22/i-need-a-bed-of-strawberry-creams-in-a-place-of-recovery-dreams/ .

As I spoke, it all came tumbling out.  I'm afraid I may have been rambling and not a little emotional.  But, you see, it's hard to remain dispassionate when we are talking about people's lives.  Babies growing up with poorly parents and (completely treatable) illnesses worsening and lingering.

Politicians love to talk about Parity of Esteem for mental health (in relation to physical).  There was great fanfare this week (on Monday 11 January) when David Cameron announced a near £1 billion funding boost for mental health services.  But already, we know this isn't enough to reverse the years of underfunding.  Speaking starkly: you have to literally be at death's door to access real care for your mental illness.

Have you tried to take your life?
Have you made any detailed suicide plans, such as stockpiling medication?
Are you a danger to others?

No?

Well, I'm sorry, but please get back in the line.

You don't meet our thresholds.
You aren't in immediate danger.
You can cope at home with your family.
There are people a lot sicker than you, you know.

This is a familiar story for anyone suffering with a severe mental illness.  For children and young people the thresholds are even higher.  Mums are (generally) quite fortunate: perinatal mental illness is becoming more recognised.  But even in this field, huge gaps remain.  The Maternal Mental Health Alliance "map" of service provision illustrates the problem: 

Getting help is just too hard, for too long, for too many.

It shouldn't have to be this hard.

But it is.

In a previous life, I used to be a health economist.  I once worked on a project for the Department of Health, looking at the cost of long term conditions such as diabetes, heart disease, and mental illness. It was clear from that research that mental illness was a huge burden to both the NHS and society (as well of course completely debilitating for the families concerned).  The research I looked at showed that just small investments in tackling mental illness - at the earliest opportunity - could lead to massive gains and cost savings further down the line.

It is a no-brainer.



In other branches of medicine, it is completely accepted that the earlier you identify and start treating a condition, the better.  
Lump in your breast?  Referral for mammograms and if there is any doubt, proceed with appropriate treatment.
Nasty chest infection?  Course of antibiotics, to prevent it developing into full-blown pneumonia.
Had a minor stroke?  Start a course of preventative medication to avert future crises.
Broken leg?  Immediate fix, and physiotherapy to get you back on your feet.

In none of these cases would a doctor employ "watchful waiting".  But in presentations of mental illness, this is precisely what they do.
Depressed?  Well you're not actively suicidal so there isn't really anything we can do.  Here's some advice to exercise more and get some fresh air.

I have been busy in the world of mental health campaigning for almost three years now, and this seems to me to be the biggest recurring problem: access, recognition, identification and treatment.  Just how bad does a new mum (for example) have to feel, before being given access to specialist help and support?  I have heard too many stories of closed doors and families living on the edge, trying their best to keep their loved ones safe.

It shouldn't have to be this hard.

Sunday, 10 January 2016

£290 million

This morning, David Cameron announced a huge injection of cash into mental health services. (http://bbc.in/1RvwrDg)

Included in a package of almost £1 billion is a sizeable £290 million (spent over the next four years) to provide specialist care to mums before and after having their babies.

This money is welcome, it is significant, and it could make a real difference to the 1 in 5 mums who suffer mental ill health during the perinatal period.  However.  Government hasn't got a great track record when it comes to protecting mental health services and in fact seem to have done their best to belittle and diminish what patchy care there is.  

But let's let bygones be bygones.  Here's a real chance to get it right. If they were to ask me, where would I tell them to spend it?

1. Perinatal mental health midwives in every maternity service.
This is the first decision I would make: to recruit, train and commission enough specialist posts to cover the entirety of the UK's maternity system.  These midwives would have time to care for the most at-risk, distressed and struggling pregnant women and new mums.  They would provide special antenatal and postnatal classes to women in their care, as well as being a continuous point of contact in each mum's care pathway.  They would also be a first point of call for psychiatric emergencies in the pre and postnatal period. 

2. Mandatory perinatal mental illness module included in all midwifery, health visiting and general practice training schemes.
All healthcare professionals likely to be in contact with pregnant and postnatal women will have undergone a minimum training in perinatal mental health.  The aims of the training are to increase awareness of different mental illnesses, how to signpost to the correct sources of support, and how to provide immediate support and reassurance. 

3. Mother and Baby Units in every region of the UK.
At last, here is a chance to close the gaps and end the postcode lottery of perinatal mental health services.  Let's stop closing down MBUs (unit numbers have fallen from 22 to just 16 in recent years, with more under threat).  Let's protect and nurture those units we have. And let's open much needed new MBU beds in regions such as the South West, Wales and Northern Ireland.

4. Enhanced therapeutic programme for all perinatal services (inpatient and community).
This is the ultimate "Nice To Have" in perinatal mental health care.  Psychiatrists are a wonderful breed who can do remarkable things with illnesses of the brain.  But they aren't miracle workers.  Recovery from severe mental illness, or living well with an enduring mental illness, takes guts.  It takes tenacity, ingenuity, creativity.  Everything and anything should be considered, depending of course on the individual. I would like to see a non-neglible portion of funds set aside for grant-making programmes for local sources of support:  walking groups and buggy fitness for mums and dads, group mindfulness therapy, art and drama therapy, parent-infant therapy, and (especially) high quality peer support.

Thursday, 7 January 2016

Meanwhile, in another Dimension...

*** This essay was inspired by a similar piece written by Bipolar Blogger last year, and available to read here: https://purplepersuasion.wordpress.com/2014/03/19/a-mental-health-fairy-tale/ ***

Imagine a world where the government in power is committed to the long term future of the NHS.  The energetic MP Luciana Berger enjoys a cabinet-level post with a brief to drastically improve mental healthcare, and ensure that every family gets the health and social care services they need.  The Government has acknowledged the LSE report (http://everyonesbusiness.org.uk/wp-content/uploads/2014/12/Embargoed-20th-Oct-Summary-of-Economic-Report-costs-of-Perinatal-Mental-Health-problems.pdf) which found that undertreated mental illness amongst new parents costs the UK economy over £8 billion every year.  And furthermore, the Government has fully signed up to the 1001 Critical Days campaign, calling for the best start in life for every child, to grow up in households free from the debilitating trauma of untreated mental illness.

Into this world, a baby is born.  Jacob was much anticipated and planned for, the son of a young couple, John and Susan, with no history of mental illness.  His birth was traumatic, and shortly afterward Susan was behaving erratically.  Her family became worried.  They consulted the pack given to every new parent upon leaving the maternity ward: in it, was a plain-speaking leaflet on perinatal mental illness, and a list of local resources.  They called the local number and a specially trained midwife answered the phone.

The midwife Maya asked John a few questions, before arranging a home visit.  By the time she came over, later that afternoon, Susan was delirious.  Maya explained that Susan may be suffering from a condition called postpartum psychosis, and needed to be seen by a perinatal psychiatrist straight away.  She advised John to pack an overnight kit for both Susan and baby Jacob, as most often a spell in hospital was necessary.  She reassured him: don't worry, this is very treatable, with the right help Susan will be recovered very soon.

In this Dimension, Mother and Baby Units are the standard way of treating severe perinatal mental illness in the UK.  The Government had invested enough money to ensure that there was an MBU in every region of the UK - including Wales, Northern Ireland, the South West and Highlands and Islands.  This couple were fortunate: their local MBU was just a ten minute drive away.  It had an international reputation for the quality of its care.

Maya patiently explained what would happen next.  They would all drive over to the MBU, for assessment by the psychiatrist.  They would likely be admitted, as a bed was available.  John was very nervous, but he felt reassured by the midwife's kind words, and the written information she gave him to digest later.

They rang the bell of the MBU: from the outside, it looked like a slightly-larger-than-average family home.  It had colourful paintwork and a well-stocked garden.  Other than the double-locked entranceway, there was little indication that this was an acute psychiatric facility. They were greeted by a staff nurse, who showed them into a comfortable sitting room.  Susan, by this stage increasingly agitated, was encouraged to sit in a nursing chair and she used the pillows to prop herself up and continue breastfeeding while the doctor came in.

"I'm Dr Brown.  But please call me Matthew."
Matthew shaked their hands and sat next to the mum.  
"From what I have seen so far, it looks like you may be suffering from postpartum psychosis.  But Susan, please don't worry: you will get better here.  And you and Jacob can stay here as long as you like until you are better."

"Here comes nurse Sarah, to give you the tour and help you settle in".

The young nurse Sarah took Susan by the hand, and showed her around the Unit.  

"You've already seen the sitting room, where we tend to hang out in the evenings.  Quite often the mums like a nice "adult" space away from all the baby stuff.  Here we can stick the telly on, or listen to music.  We've got a great DVD stash. 

"And just down here is the nursery.  We've got everything you might want for Jacob: toys, books, playmats, bouncers.  Don't worry if you've forgotten anything - we've had a lot of donations from former residents over the years, we can always find clothes to fit or toys you are looking for.  Here are the nursing chairs, and you see our resident Yolanda over there? She's using one of our hospital-grade breast pumps.  Our breastfeeding counsellor comes in every day, and she can show you how to use it if you like?

"We've also got the baby sleep zone: you'll see some of the babies sleep in there, so their mums can get a full nights rest.  It's all monitored and of course if Jacob is in there you can pop in and check on him whenever you like."

Sarah opened various brightly painted doors: to the baby changing station, the milk storage room, and the resident's kitchenette (with tea and coffee maker, toaster and microwave).  There was a beautiful dining area with French doors out to the garden.  On the large oak table was a big bowl of fruit, and pots of jam one of the mums had made in the OT cooking class.  Some of the residents were sat outside on the patio chairs, drinking tea.  Their babies were rolling around on picnic blankets.

"We have ten bedrooms here, and you'll soon get to know everyone.  The mums out there are Kate and Daphne - they are both due to go home soon, but not that long ago they were both very poorly themselves.  I've checked and they are both very happy to chat about their experiences, and what helped in their recoveries.  We find peer support here to be invaluable, and we also encourage everyone to attend group therapy sessions and to log in to the online Twitter support group every week.

Here is your room.  I'm sorry it's on the small side, but we used the space to make sure all the rooms had en suite bathrooms.  We really value our residents privacy, and ability to relax, here.  We do have to make regular observations, but we will explain the procedures carefully so that you understand what and why we are doing certain things.  I know a psychiatric hospital is a scary place to be, but I promise we will try to allow you to feel at ease."

Sarah continued the tour, by showing Susan and John the nurses station and notice board.

"This is the real hub of the MBU, right here.  I know it looks confusing, but here on this big board is everything you might want to know: who is on duty, their names and job descriptions, who is your named nurse, when the doctor is next available.  You'll also see all our different timetables: we have one for relaxation and mindfulness activities, one for the group exercise programme run over in the OT gym especially for new mums, and one for the mum and baby activities.  Right now, we have Rhyme Time, baby massage, postnatal yoga, and Monkey Music.  We encourage the Dads to join in with these too, so some of the classes take place at the weekend.   Talking about dads, we believe in the whole-family approach here.  Two of our bedrooms are actually self-contained family units, which might be suitable for the three of you once you are feeling a little better.  You're a family now, and we treat you as a family!

"So, back to the timetables.  We try to encourage our residents to pick just one or two activities, to fit around their regular psychology and psychiatry appointments.  As you start to feel better, you might want to do more - and perhaps explore all the other activities put on by the OT department and patient-led groups.

"I can see this is all a bit overwhelming!  Don't worry, you don't have to sign up to anything just yet.  And all the information is also in your welcome folder, just there by your bed.

"The first step is to start getting you better.  John told the doctor that you haven't really slept since Jacob was born? Ok, so this is the priority for tonight.  Will it be ok with you to take Jacob to the nursery, so you can have a lovely bath and an early night?"

Susan nodded.  As John took Jacob down to the nursery, she felt a wave of relief.  She sank down onto the comfy bed as nurse Sarah drew the bath and added a liberal handful of lavender bath salts.  She felt safe, for the first time since Jacob was born.  She knew she was in the right place.


Sunday, 27 December 2015

What is postpartum psychosis?

Regular viewers of Eastenders are full of questions right now.  Does Stacey have PND? Who is the dad, if it's not Martin or Kush? Why is she acting so strangely?

The Eastenders team have already revealed that Stacey is in fact suffering from a rare birth complication called Postpartum Psychosis (PP), which sadly is not all that unusual in women with bipolar disorder (such as poor Stacey).

As someone who has been through it, and come out the other side, I thought I'd gather some thoughts together on the subject.

This is not a dream
Hallucinations (auditory and visual) aren't like having a bad dream or being a bit trippy.  There aren't any blurred edges or ghost-like figures or spooky whispers in the dark.  Hallucinations were as real as the world around me today: I could see, hear, touch, people who I experienced as completely there.  I remember the situations now, just as I remember what I had for dinner last night.  I reacted to them as if they were happening to me, right there and then.

This is not a joke
I guess it is possible to have a "benign" or even quite pleasant psychosis.  That's not my experience, but it must technically be possible.  But psychosis seems to be rooted in trauma and distress.  So it manifests itself as brutally and as nastily as the innermost reaches of the brain can conjure up.  Unfortunately for me (someone who devoured horror novels as a teenager) my brain could conjure up plenty of darkness and depravity.  Worst fears, tortures, humiliations - they were all brought to the surface by psychosis.

This is it.
I fought the psychosis like a woman possessed - because that's what I was.  I wasn't going to take it lying down: being suffocated, burnt alive, alone forever, dragged to hell.  I fought it.  Because I had to. It isn't the psychosis itself that is dangerous (after all, it is all in the head) but it is the real, physical, reaction to it.  The natural human instinct to run, fight, escape.  Psychotic people have jumped from buildings, thrown themselves onto roads, lashed out at others, become so mentally distressed they make themselves physically sick.  This is why PP must be treated as an emergency, with intensive inpatient treatment (ideally in a specialist Mother and Baby Unit).

I was very lucky to have been admitted to the MBU relatively quickly, where I was safe from the physical effects of the illness.  The psychosis could run its course under careful clinical supervision, and there was absolutely no risk to my baby (who was being expertly cared for in the ward nursery).

I won't give any spoilers for Eastenders fans, but viewers will need to brace themselves: Stacey's journey will be raw and real and incredibly moving.

For lots more information (as well as support) please see Action on Postpartum Psychosis: www.app-network.org 

Wednesday, 23 December 2015

Ghosts of Christmas Past

With less than 48 hours to go, Christmas 2015 is looking like my first properly mental-illness-free festive period in my adult life. 
*Touch Wood*

I don't know if this counts as seasonal affective disorder, but for whatever reason my mood never fails to dip towards the end of autumn, just in time for full-blown depression for December 25th.  Merry Christmas!

Ways I have spent Christmases past: 
- in tears 
- in debt (having overspent on credit cards on loved ones' presents, to make up for my horrendous moods)
- in a state of numbness 
- in a mess (unable to summon the enthusiasm to wear something festive, or blow dry my hair, on slap on some make-up).

December 2012 shook all that up: I was on home leave from psychiatric hospital, my eight week old son in tow.  I was just grateful to be alive, to be lucid, to be a person in the world, to not be in hell any more.  Those few hours spent at home cemented in me what was important: health and happiness. Family and friends. Sanity.  Nothing else mattered.  Not the presents I bought, the clothes I wore, the smiles I offered. 

The following year, we relished the chance to be properly together, just the three of us.  It was low-key, but special.  I was still somewhat fragile, but on an even keel.  We got a tree, we cooked a big roast with all the trimmings, we lovingly prepared a stocking for The Boy.

The year after that, I was recovering from a spell of acute anxiety.  I had taken on perhaps one or two too many commitments over the summer and early autumn, which led to one or two restless nights, which led to a real fear of becoming psychotic again. This "relapse" shook me to my core, and I spent Christmas 2014 still reeling from it.

But this year - 2015 - I can honestly appraise myself as being OK.  I've been busy, for sure, but with The Boy now at nursery I finally have some regular "Me time".  I can tell very quickly when I'm becoming a bit over-anxious, or irritable, hypomanic, or down.  I have the tools (some of which learnt on Mental Health First Aid, some just through experience) to self-correct and stay on track.

So, this Christmas, I will be raising a glass to Good Health and giving thanks for what has been by all accounts a great year.  I'm grateful for every day of good health I have.  But with a super-excited three year old in the house, I am especially grateful for a happy and healthy Christmas day.

❄️ Merry Christmas! ❄️