Pain is temporary, giving up is forever

Sometimes you have to admit that you need help.  I am a fiercely independent person, I like to be in control and I very rarely admit that I need help.  But, I have to admit defeat and say that once more this illness has weakened me.  I won't say beaten, as there is still some fight in me, although it is diminishing by the day.

Eight weeks ago I gave birth to my beautiful daughter.  Her birth was wonderful, and initially I rode on a high of hormones. I did everything by my plan, carefully managed by my team. I started my lithium five days post delivery, I met regularly with CPNs and attempted to manage my sleep as best as possible. But sometimes even when you do everything right the darkness slips in.

Gradually at first, I started to feel the signs of a low.  Hopelessness, crying, inability to make even small decisions.  To begin with everything was blamed on tiredness, on the responsibility of looking after a toddler and a baby.  But the feelings took hold of me, the sadness overwhelming.  Finally a visit to family, where meals were cooked for me, the baby held, sleep had.  And yet the sadness prevailed.  On the journey home, when the tears were still trying to come, I realised that I could no longer blame these feelings on tiredness, relentlessness or the normal feelings associated with caring for children.  I am good at hiding these feelings, and it is possible that no one noticed to begin with.  But despite the best efforts of my team, the intrusive thoughts are taking over and the illness is gaining momentum.

And so today I will be admitted to the Mother and Baby unit with my daughter.  Hopefully it will be a short stay, where I can rest, get stabilised on additional medication and start to get well again.  I am anxious and scared at what to expect.  At having to relinquish some of the control to a team of people I don't know. But I have to do this, not only so that I am no longer a danger to myself, but more importantly because my children deserve a well mother.  Not one weighed down with misery and tears. I want to be able to laugh with my son again and delight in my daughter smiling.

A part of this feels like defeat, like admitting weakness.  That I can't do what thousands of other women do everyday.   I have to acknowledge that I am ill and I need help getting better.  If I had broken my leg I would get it fixed, and I so badly want to be fixed. Suicide is the number one cause of maternal death in this country, and I cannot be part of that statistic. I will not let this illness beat me.

The title comes from Lance Armstrong (despite the drugs scandal I like the quote).  In full he says  "Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever."  This may last weeks or months, but with help it will subside.  I cannot and will not give up. 

Living with the consequences

Within writing about mental health there is a lot about symptoms, feelings and experiences when a person is ill.  What it feels like to be depressed, to live with mania or stress.  There is less discussed about the consequences of these periods of time on the rest of your life. I mean the long term consequences of periods of mania and depression, that leave scars in your everyday life long after you are well and healthy again.

There is a legacy of emotions from both these periods that can impact on your work and relationships.  Depression and mania can mean long periods of time off work, leading to absence reports and constant monitoring of your attendance.  In turn this may lead to judgements on your ability to do your job, or a nervousness amongst employers over "what if" you were to be ill again.  This inevitably has effected my choices in terms of work and I am fairly certain influences my employers judgements of me.  I can never shake off the periods of absence, no matter how much my attendance improves when I am well.

But for me the greatest consequences are personal and financial.  These are the things that hang over me, that continue to influence my life long after any period of illness.  During one now diagnosed manic phase I ran up close to £20,000 in debt over about one to two months.  I have very little to show for this, except four years of a debt management plan, a destroyed credit rating and very little confidence in my ability to ever get credit again.  This financial legacy has had lasting consequences for me (and my husband) in the seven plus years since it happened.  Our mortgage is high and not particularly favourable; the years spent paying off the debt were lean and stressful; our honeymoon was four days in the UK and a family holiday seems years away.  It meant only six months maternity leave with my son, and will mean the same this time round as we have never really recovered enough to save and invest like other thirty somethings.  It means I cannot go part time to spend time bringing up my children, or even consider a lower paid job.

In personal terms, no matter how much people try to understand your condition, depression and mania can destroy and damage relationships.  High spending, alcohol and drug misuse and sexual promiscuity are common in mania and not conducive to maintaining relationships.  I have burnt many bridges in my time through my behaviour and often still feel shamed at the things I did.  Depression is draining for all involved and often leaves lasting resentment for partners and family.  The unpredictability of living with someone with mental health issues, such as Bipolar must be exhausting at times and inevitably has an impact on how that person is viewed.  I have talked before of separating the illness from the person, but when the illness creates personality changes it is hard to do.

I am eternally grateful for the support and love that my husband and family give me when I am ill, but more than that I am in awe of their ability to live with the long term consequences of my behaviours and forgive my discrepancies.  

Better late than never

I have changed Psychiatrist as part of an NHS reshuffle (read-money saving attempt).  My meeting with the new doctor seems to have highlighted some issues with the old one.  As I had already thought I should have been referred to the Perinatal Mental Health team at the beginning of my pregnancy so that they could cover my care, liase with midwives and consultants to ensure I stay well both during and after my pregnancy.  Apparently they have been awaiting a referral from my previous Consultant that never materialised.  Unfortunately if you have ever accessed mental health services, this won't come as much of a surprise.  I have slipped through the net many times, in fact would likely have been diagnosed a year earlier had another NHS reshuffle led to a referral being lost.

However, this meeting at 32 week pregnant has thrown me into a bit of emotional turmoil.  My new Psychiatrist has outlined (as should have been the case) the risk factors and dangers of pregnancy and postnatal for women with Bipolar.  We have a 40-70% chance of relapse in the first 12 weeks.  This could be either mania or depression, added to this a 1 in 2 chance of developing puerperal psychosis (this is compared to a 1 in 500-1000 chance in women without a history of Bipolar).  These are scary statistics.  The depression experienced postnatally by women with Bipolar has a much more rapid onset than postnatal depression, and more frequently leads to suicide.  Mania is very common in postnatal women due to sleep deprivation and is very much more disruptive and dangerous than depression.  Psychosis is the scariest.  A complete block from reality, hallucinations, believing that your baby or family are in some way dangerous to you. 

My appointment involved a discussion of all these, and a worst case scenario outline of what might happen (admittance to a mother and baby unit, psychiatric ward, crisis care team).  Explained in the first trimester it may have been easier to here.  With eight weeks to go it has left in a some what emotional state of anxiety.  I will write a postnatal plan with the Perinatal team, which will be shared with all my carers.  This will involve plans for all eventualialities and how the postnatal period will be managed. Top of this list is the question of medication. I have taken lithium for nearly two years before this pregnancy, an anti-psychotic drug that works very well in Bipolar, but no one knows why or how.  I have been stable and functioning.  But it is not compatible with breastfeeding, it is a metal and harmful substance that can casue serious damage to liver, kidney and thyroid.  It takes six to eight weeks to work as the levels are based on individual's metabolism.  I have some difficult decisions to make.  I want to breastfeed, I want to be able to feed my baby and do what my body was designed for.  My medical team want me to formula feed and take medication from the outset.  For me it feels like another way that this condition has impacted me and at best seems unfair at worst has made me sob with grief at having this taken away from me. 

Mental health in pregnant and postnatal women is still a very much neglected area of medicine. Some NHS trusts do not have any dedicated mother and baby units, Perinatal teams or specialists midwives.  And yet suicide is the biggest cause of maternal death in the UK.  Women are twenty times more likely to be admitted to a psychiatric unit in the 12 weeks following birth, than in the two years before or after.  The last few weeks of my pregnancy are likely to be filled with medical appointments, care plans and anxiety.  I want to be well, look after my baby, have happy memories of becoming a family of four.  But overshadowing this is a long list statistics and possibilities of what might happen. 

Is there a stigma?

When I first published this blog many people commented to me that I was very brave sharing my mental health problems in this way.  At my recent consultant appointment, the registrar asked if it was ok to write in my notes that I was seeing a psychiatrist in case someone read it.  I have always justified my relatively open attitude to my bipolar by comparing it other chronic medical conditions, like diabetes.  If I wouldn’t be ashamed of talking about something like that, why should I be ashamed of being bipolar? 

Mental health is different though.  Rethink mental health and Mind are currently running a campaign called “Time to Change”, encouraging people to be more open about mental health in an effort to reduce the stigma and discrimination.  Their studies show that 9 out of 10 people with mental illness reported a negative impact of stigma and discrimination.  Their aim is to reduce discrimination by 5% and to get people talking about mental health more. 

Why is mental health so difficult to talk about?  Possibly it is a belief that it isn’t a real illness, isn’t caused by a bug or a virus.  Perhaps because it is hard to diagnose- you can’t look at bipolar or depression under a microscope.  Or maybe it is that is about feelings and emotions and somehow being weak.  Whatever the issue it does need to change.  There are so many stereotypes of mental illness that have relatively little basis in fact. 

I have definitely experienced the stigma attached to having bipolar, and possibly discrimination.  Why shouldn’t I have my medical condition and treatment on my antenatal notes, why do receptionists feel the need to whisper or use hushed tones (in the manner of old ladies using rude words).  Many people do treat me differently when they know. Often interpreting everything through the view of bipolar- not accepting that sometimes I might just be sad, angry, happy etc.  I have lost friends since my diagnosis, and through being ill.  Not suddenly, but gradually over time, people perhaps can’t wait for you to “pull yourself together” or cheer up.  Or they just don’t know what to say.  Absence from work for mental health reasons is rarely seen as acceptable.  I worked with someone once who had a chronic lung condition, which often led to short and extended time off work. This was never met with anything but sympathy and support.  I can’t say I have always been so lucky.  And I don’t mean from employers, I am lucky in that regard, but from colleagues.  Mental illness is a weakness, one we are supposed to be able to fix ourselves.  As to discrimination, I can’t pinpoint any examples, but I can never be sure that a job application won’t be immediately binned when they see my condition. 

I don’t think there is the same taboo attached to mental health as there used to be, it is certainly much easier to talk about now than in the past.  But the stigma is still there, still needs addressing.  So I challenge you to sign up to the Time to Change pledge- talk about mental health. 

http://www.time-to-change.org.uk/home

If life gives you lemons...

...make lemonade, says the proverb. It is very easy to pick out the negatives of bipolar, to mull over the limitations it places on me, the disadvantages of my condition. However, recently I have been trying to consider the flip side, the positive personality traits I am bestowed with due to my illness. What good or positive can I spin out if this hand I have been dealt?

Well I can be very passionate about issues. All sorts of issues, sometimes I just like to discuss, no matter the topic!  Perhaps this enthusiasm, the passion with which I can decipher an issue and present it to others stems from my different brain wiring.  Maybe my reflective nature, my need to deeply consider things from all angles is down to the way my brain chemicals function.

History is littered with people suffering from bipolar who have made significant contributions to the arts, politics and literature. Van Gogh was apparently bipolar, with some of his greatest paintings, the result of his high manic states. Others include Winston Churchill, Buzz Aldren and Robin Williams. Bearing in mind only 1% of the population have a diagnosis of bipolar, perhaps there is something positive about this condition, creative, inspiring that drives so many sufferers into  influential spheres of society.

Don't get me wrong, if I could make it go away I would, without a second thought. I am a Christian and can't deny that I haven't struggled many times with why I have been made in this way. Why should I have to deal with this condition, its limitations. Why would I be created this way. Looking at the positives helps with this, perhaps it is integral to me and my purpose in life.  Perhaps having bipolar holds some potential, a creative, spiritual sense that is essential to my journey. Instead of  disorder maybe it is a potency, a potential that can be constructive and just maybe outstanding.

Only in mental health

Ten weeks ago when I last saw my midwife I was told she would refer me to a specialist mental health midwife.  I saw one during my last pregnancy and found it really helpful. However, I still haven't heard anything.  So I have tried ringing the surgery to leave a message for the midwife.  The receptionist won't let me, she looks on system and when I say the dangerous code word "mental health" she speaks in hushed tones and starts searching on her computer.  Being the medical expert, she then decides that I need a phone consultation with the doctor as, "he has helped with 'these things' before, also spoken in hushed tones.  I wonder whether she adopts this tone when talking about other medical conditions.  I try and explain that in fact I am not sure the doctor can help, seeing as this is a maternity issue, and I haven't seen my GP for months.  No she assures me with matters "such as these" a doctor would be best.

I am now 23 weeks pregnant, over half way through.  I am not taking medication and therefore finding it quite hard.  Truth is I am really struggling, and I need the medical help that I am entitled to.  I hate to keep making comparisons, but wonder if other pregnant women with high risk conditions have to wait this long and go through such a process to get the help they need with their medical condition.  Mental health is the poor relation of the health service.  It is dealt in hushed tones, code words and generally left to the bottom of the pile. I need this help now and it isn't the first time I have had this kind of circular chase for services.  Twice in the past I have 'dropped off' the waiting list for counselling and other services.

But I will await my phonecall, and imagine when the doctor decides that he can't actually help I will start battling with receptionists all over again....

Pregnancy and Bipolar

“Children are the anchors that hold a mother to life”.  So said Sophocles.  Someone gave me this quote not so long ago and it holds very true for me. I have written before about this, how my son saved my life in many ways.  It is an important quote for me at the moment as I am pregnant again.  As little as ten years ago, women with Bipolar Disorder were advised (read told) not to have children. There was no management plan for the condition and it was thought best just to avoid the hormonal and emotional rollercoaster that is pregnancy and motherhood.

Officially this has now changed, there are NICE guidelines on the treatment and management of Bipolar that include a section on pregnancy, post-natal and breastfeeding.  But it isn’t as simple as that.  There are still a few people that are not convinced that people with mental illness should have children.  I know from personal experience this time round that many people, both in my medical team and personal life, feel that I should simply have accepted that I shouldn’t do it, instead of helping me plan to keep me as well as possible.

As it is I am finding it hard going.  I am unmedicated and suffering from pregnancy related insomnia and sleep has always been a major trigger for me.  I am still awaiting referral to a midwife that specialises in mental health.  I am still waiting for the talking therapies I was referred to in August.  I am due to see a consultant, but not sure what they will do except advise I give birth in a consultant led unit (I will not). 

But as always it is hard for me to separate what is my Bipolar and what is ‘normal’ stress and tiredness.  After all I am a full time teacher, Head of Department, pregnant already with a toddler.  All those things are fairly exhausting on their own.   I have a very good game face, I am good at convincing the world that I am ok.  The problem with admitting you aren’t is that it escalates and others start treating you like you are in crisis.  I’m not in crisis.  I just need a little bit more sleep, a little bit more time, less stress and for people to listen to how I really am and offer me solutions rather than a knowing nod that says “well you would go and get pregnant”

It's a media world

Media portrayals of Bipolar often grate on me.  Watching many programmes you would easily convinced that people with Bipolar are constantly manic, psychotic and nearly always incapable of holding down a job or looking after children.  There are of course people with the condition that fit this description (although there are many non –Bipolar individuals who are not suitable for these jobs either). However, much of the media representation of Bipolar, and many other mental illnesses reduce the experience to the most extreme symptoms, ignoring the many individuals who hold down jobs, have families and to the rest of the world may even appear “normal.”

There are of course the famous role models- Stephen Fry, Carrie Fisher etc, but I am not sure people working in the creative industries should provide the only models.  There are people with Bipolar working as teachers, doctors, scientists, counsellors, civil servants, financial advisors who do not fit this media representation.  I myself, medicated and under the care of a psychiatrist, work full time and have a family. 

Homeland, first shown this week on Channel 4, promises to provide a different representation. The main character, Carrie has Bipolar.  She is a high level officer working for Homeland Security in US.  The symptoms are evident, even in the first episode (a state of hypomania, medication) but what is clear is that her Bipolar is woven closely with her personality.  I am hopeful that it will demonstrate the way in which often it is difficult to separate the personality from the illness, where symptoms and traits overlap.  The writer based the character on her sister, who has Bipolar and wanted to offer a more realistic characterisation of the illness and the way it impacts on the life of the individual.  Ultimately is no more acceptable to represent people with mental illness as always manic and psychotic, as it would be to represent all black people as gang members, or women as housewives.