Hiatus over??

Well it was a forced hiatus. Sorry I was away for a whole bloody year and more, but I have been reading and keeping up with all you amazing bloggers surviving and (somehow) thriving and being generally inspirational 🙂

I was super ill. I had a massive manic period, followed by a bout of deciding to stop eating, followed by getting better and realising that I had to do something to get my family out of the trap we’d found ourselves in, so I returned to work. Fuck mental health my god if there is anything that will put a person into poverty – which yes, exists in in developed countries too, all things being relative – it is shitty mental health.

Did I also mention I melted off my hair nearly a year ago? I was trying to go blue and made the mistake of leaving the bleach on for too long. So as well as feeling like crap I had Doc from Back to the Future hair for ages (well I still do but at least I can tie it back into a pony tail now!). I literally did not leave the flat for 4 months till I had to at Christmas.

So far so good ish? It’s a senior role, it’s tough and I have been in floods of tears and had to take days off when I just could not get out of bed, but I am doing it and have lasted beyond six months in a role for the first time in Fundraising since I was 30 (I am 38 this year – actually in less than a week). I have so much I want to share on my blog and so many ideas for things I want to do – but the good thing is that I am on Fluoxetine which has helped with the crippling anxiety and paranoia I was getting on top of the lithium and quetiapine, and we stopped psychotherapy because regressing was was actually making me worse.

We are MOVING HOUSE which such a big deal I cannot even begin to tell you how much I have come close to committing suicide because of our horrendous neighbours (and you know, it is serious not just an expression – their shit dance music is blaring and keeping my baby awake as I write but NOT FOR MUCH LONGER WOOOO). Once I am into my new house, hoping work does not kick my ass too much and so on, I want to return to this blog properly.

The most important thing is that my beautiful baby girl is thriving and doing so amazingly well. I am proud to say she is a typical toddler now at 2 and so gorgeous she makes my heart burst every time I look at her. So, more to follow, I will return to this slowly. Thanks for hanging in there with this blog of mine 🙂

Update from my scribbles post

DH opened a letter just now with a blood testing form. My lithium is apparently too low. I guess that would explain my capacity to write over six thousand words a day for my fan fiction? The compulsion to write literally came out of nowhere two months ago – apparently about the time my levels began to drop and the shit with our neighours kicked off (I forgot to mention it in my last post – we had to call the police. I just wanted to die, feeling unsafe in my own home), and my frenzy began.

Now, perhaps the dumbass psychiatrist might actually acknowledge I have bipolar instead of asking me whether I think I have it which is what I got at my last appointment! Why the fuck would you ask me if I have bipolar! Isn’t that your job?!

Anyway, watch this space. I have to test urgently apparently and they want to review my medication. Hopefully more normal service will resume soon.

What next?!

I saw my new psychiatrist yesterday. To say we were underwhelmed would be an overstatement. DH described it perfectly when he said how we were immediately put on the defensive. So this post is a space for me to vent, but also to actually try and muddle through my head what I have to do going forward to take control of my own health again.

There was a really noticeable language barrier for starters. Which if she had read my file should have been apparent and is one reason DH always comes to all my appointments. Except it has never been an issue till now as all doctors are supposed to be fluent in English. And if she didn’t feel confident or want to communicate in English she should have given my case to another psychiatrist.

If she had also read my file as she claimed she had she would have known we were back to stay and had no intention of moving again. But why DH had to tell her three times in the session we don’t know.

Also if she had read my file she would know I have Bipolar 1 with very well documented periods of mania and subsequent depression, so I was left very confused as to the references to Bipolar 2 in the conversation.

If she was really listening to me as a patient she would have heard that I clearly stated I do not have nightmares as a result of the childhood sexual abuse or any other traumatic effect that has happened. I have the odd nightmare same as anyone else but I don’t struggle with them. So why she then listed them as something I was having I fail to understand.

I have insomnia at the moment because I have no stability at home and I fucking hate sleeping on my parent in law’s floor. Funny that. I’m anxious about moving back to our old flat, much though I love it, because our neighbours are so awful and I’m dreading the loud parties with drugs and booze till 3am upstairs where the noise invades my safe place and the police and council did nothing in four years. But we are taking steps to change that and it is better than the 4 of us camping out in someone else’s house. So that’s why I have insomnia.

I have paranoia for sure. I was at a point last week where I wasn’t going to take my lithium any more as I thought the nebulous ‘they’ in my head were trying to alter me in some way.  I can’t deal with loud noises and I look suspiciously at anyone in the street. Literally anyone. I really hate having to leave the house but I have to do it otherwise my poor daughter would never know what other people looked like. I only feel safe when with DH. So this new professional being really quite confrontational was very hard for me to process.

And then the medicine talk. This is the first time a Dutch psychiatrist has just bandied around taking drugs like the were Smarties. I have anxiety through the roof most days but it has been so much better since returning. Quetiapine was prescribed to me in Scotland to take on an as necessary basis. We also reduced my lithium down which had been increased during my pregnancy. We knew I function much better with a lower lithium count and the side effects of too much lithium really push my anxiety beyond coping, not to mention making me very ill. Once I reduced my lithium I was much better with the anxiety. I do not respond well to Quetiapine – in fact I hated it. It turned me into a zombie. Even 12.5mg meant I couldn’t get out of bed the next day. Forget disassociation, of which I am a master manipulator of, this stuff shut me off completely from the world. I couldn’t take it unless I knew DH would be home to look after the baby ad I simply could not function and it actually made me worse in terms of managing the guilt around my child. And, it wasn’t even prescribed for PSTD.

Again, all in my file.

So why was I being pushed to not take Quetiapine regularly, but actually increase the dosage? I couldn’t give a shit if it took a few weeks to get over the side effects, I don’t have a few weeks to walk around like a space cadet. I’m a stay at home mother and I’d be unable to look after my child so who is going to do it for me?

Also, with my lithium usage over several years now, why again would you push for me to increase the dose knowing that it makes me sick and increases my anxiety? If you had read my file, psychiatrist lady, you would know that it is a known issue for me dealt with very ably by one of your colleagues who has sadly now left. More’s the pity. We also know how successfully I respond to lithium, never demonstrated better than when I was pregnant and had no idea what a black spot I was in until my lithium count showed as almost nothing due to the increasing volumes of fluid in me. And I was immediately better when we increased it. So yes, funnily enough I am very aware of how much it impacts and if I thought it would help I would increase it. So how about you listen to me as I’ve been doing this for years rather than assume you know better?

DH thank God just took over at that point in Dutch and said not happening. I was almost shell-shocked at being run so roughshod over.

The final, and perhaps most significant, blow I received in my appointment was to be told that my diagnosis was perhaps not correct. She had read my file and felt that there was Post Traumatic Stress Disorder (PSTD) present but as yet undiagnosed. Now, the way this came across in English was it’s not Bipolar, it’s not BPD but more PTSD.

So my immediate reaction was what the fuck I was just coming to terms with Bipolar what the hell, does that mean I have something completely different? I was so totally confused and also angry given I hadn’t had the chance to talk properly during the session and this bombshell was delivered on just reading rather than talking to me as a person.

When I said bipolar ran in my family she then responded ‘oh well lots of psychiatrists would just say oh it’s bipolar without looking into your history properly’ and DH responded that we had received the diagnosis by her colleagues in the very same centre. To which she looked rather confused about.

So did you really read my file, lady? Did you see the bit by the psychological unit I was assessed by on the floor above us saying it was most definitely bipolar and I had traits of BPD, but bipolar was the root cause? Feel free to slag off your colleagues as much as you like but I can assure you a year’s worth of assessment and multiple meetings reached their diagnosis which was then further reinforced by psychiatrists at one of the best teaching hospitals in Europe during my pregnancy. Yet, on the strength of ten minutes of meeting me, and apparently reading my file which you must have done two minutes before the appointment started, you have decided the collective wisdom of all these others is wrong and you are right. To the point of being pretty rude about them in front of me.

Apparently I do still have bipolar and I do have the BPD stuff. In Dutch it all came out rather differently, or so DH explained to me. Because I don’t think I could survive having to go through a whole reassessment again, I really don’t. I’m struggling to find out who I am as it is and I can’t face the thought of having to start all over again.

And thank goodness I had an appointment with my lovely psychologist right afterwards who explained it properly. That she had always suspected that I had PTSD as well as everything else, but that PTSD alone didn’t explain the levels of psychosis and mania or my reactions so it was now a matter of looking at a combination of things. If it was just PTSD they could treat me one way. If it was just bipolar they could treat me another way. But because of the combination they had to look at the whole and how to approach it going forward now I wasn’t pregnant and full of hormones.

At least I think I have that right.

I’m not denying the PTSD potential. Far from it. What I reacted so strongly to was the word ‘misdiagnosed’ and the subsequent rubbishing of all the previous advice and rejection of how I wanted to manage my condition, which is not to blindly take a drug when I know the side effects it has on me. Again, I am not anti drugs at all but the patient has to be in control of what they are putting in their bodies and the physician has to listen and respect what the patient is saying when discussing the impact of medication. If it doesn’t work then an alternative path needs to be found.

I have always had good and informed dialogue with my psychiatrists previously so this was the first time I came up such a huge brick wall. And one who was just prepared to chuck drugs at the problem without any meaningful discussion. I mean really, give me one good reason why I should put myself and my family through that for a condition that I haven’t even been diagnosed with yet with a drug that has only had a negative impact on me thus far.

Urgh so next steps are for DH to speak to my also very lovely case worker and tell him we want to see someone else. I have to have confidence in who I see or it will make it worse. In the meantime I have my Promethazine back which works when I have insomnia so I’m very pleased about that.

Long term I have to try and get my head around this other hurdle. The one good thing was that I was told I should not work as it is too stressful with will now help with my benefits pathway.

For me too there are whole new areas to think of for research and blogging – the importance of an advocate for the patient, medication and caring for small children, and patient voice. I know they are all huge, recurring issues in the mental health world. I am so lucky to have DH by my side and be my voice when I feel too scared, ill or intimidated. But not everyone has that.

I feel a bit overwhelmed still by the pronouncement so I will take a step back again to process stuff. Perhaps, to end on a positive, it is one step closer in my search for that elusive peace I so crave. I hope so.

RIP Charlotte Bevan :(

There is always an awful lot of terrible news in the press, with families and friends going through intense suffering and grief. But nothing hit home to me so much as this tragic story of Charlotte Bevan. The moment I heard my heart was sinking, wondering if she had some form of mental health condition that might have led to such uncharacteristic behaviour.

For the latest story, this article covers it:

http://www.theguardian.com/uk-news/2014/dec/04/baby-girl-dead-body-charlotte-bevan-avon-gorge

My heart goes out to the partner/father and family of the mother and baby. I am really shocked by it all. Whilst details are unconfirmed, it does indeed appear that she lived with a mental health problem of some sort. I won’t talk about this specific case too much as they need to be left in peace, but in general terms this highlights in such a stark way how careful ladies need to be, particularly if you have bipolar, schizophrenia, BPD, depression, or any of the many issues the brain throws at us to deal with.

I blogged earlier on in my pregnancy about the staggering chances of postpartum psychosis and depression in the first couple of weeks after birth – 50% chance, 1:2 ratio – not sure I can make it clearer just how bloody high the risk is of a serious incident – so to see such news above is really terrible.

The lack of sleep, combined with raging hormonal changes, combined with massive fluctuations of medication in your system, combined with the shock of being a new mother, combined with the general grind of living with a mental illness, combined with the sheer physical exhaustion your body has been through these last nine months and then pushing out a baby on top of it all…..these things can’t be underestimated. And NOT ONE person will be able to prepare you for it. It’s just something you have to get through. All I can do is share my experiences and hope it resonates somewhere with someone.

I was under 24 hour watch when in hospital. I was monitored constantly. I couldn’t even go down the corridor 2 seconds without being asked where I was going and if I was ok. I know I haven’t gone into the particulars of the birth, and it isn’t really for this story, but my baby was in intensive care for the first ten days of her life and it was like no other experience I ever want to live through ever again.

Because of this, because of my bipolar, because of the very high chance of an incident, I was never left alone. I had blood tests every day, blood pressure checks four times a day, my lithium was put up to almost double the dosage I had been on, and I was on strong antipsychotics. I had hallucinations, seeing ghostly wisps coming through the curtains of the ICU to take my baby away. I was so close to the verge of physical collapse. I was given Lorazepam which did not work at all as I was so frantically needing to be with my baby. I was sleeping 2-3 hours a night, impatiently lying in bed waiting to be able to get up to go see my baby. I probably could have snuck down to the ICU to see her, but I was under such strict orders to remain in my room and try and get some rest I didn’t want to go to the effort of being challenged. They really were scary, those nurses!

Perhaps somewhat controversially, I was also told under no circumstances was I allowed to breastfeed. I had to remain on my medication to prevent episodes of mania, psychosis or depression at bay. Now, the whole breastfeeding thing is a whole different article and I want to go into that at a different time. But this just again puts it into perspective how, as a new mother,  even when we think we are doing the best thing by our children, it might be better to do something else. It’s terribly hard to go against your instincts and what we are programmed to do. Ultimately, though, it’s the best thing for our babies and for us. They were really hard on me for a reason and, looking back on it, I am grateful as I think it probably kept me alive.

I’m hoping that there is not a chance that the psychiatrists advising this lady would have told her to come off her medication to breastfeed. We have no information on this so I won’t go into it more. What I am appalled by is how a woman with a known history could have been left unchallenged throughout the maternity ward and then out the hospital in such a way. I hope there are some serious questions asked here about how they take care of such vulnerable women and how on earth this was allowed to happen. There has been a major failing somewhere along the line for this to have happened.

No words can express how sad this has made me feel and my thoughts are with the family.

I’m researching and it’s quite exciting!

Well it has been a challenging few weeks but today I am beginning to see light at the end of the tunnel. I am applying for a job where I can not just openly declare my bipolarishness to the world but actually have it as an asset and work for to improve the lives of people living with a mental health condition.

OK so I also might not get the job 🙂 but the whole process has been so useful for me. There were some really interesting questions on the application form which got me looking at my bipolar and BPD stuff in a completely different way. I went off to do some further reading and research and read up on things I had never heard of before, but that really impacted on things that have been niggling at me since before I was even diagnosed.

Co-production and social models of disability are so interesting. I often felt through pregnancy, labour and definitely after giving birth that I was being forced to do something the medical profession told me I had to do, rather than follow my instincts. I thought as a new mother, full of hormones and with bipolar, I had no instincts. I was really rather wrong and the whole thing did nothing for my confidence.

Instead, often I think we are disempowered from making our own choices and working together with the clinicians to come up with a more holistic model for our treatment. We are individuals and a one size fits all simply won’t work. We are already battling against society’s impressions of us all running around in Bedlam so why make it even harder for us by not involving us in the decision making process over our own bodies?

The Equalilties Act of 2010 and supporting EU legislation is based around a medical definition of disability – that we are broken and something must be done to fix us. So immediately we begin with a negative connotation that is only reinforced the more you battle the maze of treatment out there. We are passively expected to receive treatment and not question it. Yet when my dosage was massively too high, I had such a fight to try and reduce it down despite feeling like complete shit and running around in a madly anxious manic fog (and guess what – I feel so much better for having it reduced!).

It is a lot to think about, and when I am a bit less raw from the whole labour and newborn experience I will discuss what I went through. In the meantime, here is an interesting article on some research on co-production. I’m going to try and incorporate more into my care regime. It has got me thinking so I hope it helps some of you as well.

http://www.scie.org.uk/publications/guides/guide51/what-is-coproduction/principles-of-coproduction.asp

Tired. Tired. Tired. Did I mention I’m tired?

Here’s a post I was in the middle of typing when pregnant, around March I think, and then never got around to finishing. So I have finished it now. It might be useful for those ladies considering an increased dose of their medication during pregnancy 🙂 I do talk about thoughts of death, paranoia and suicide in the context of adjusting medication so please don’t read on if that could trigger you in any way. 

I’m sorry it has been some time since I last posted. I have been surprisingly busy and I find these days my brain can only process one thing at a time.

It has been a nice time. I have done job interviews, unexpected as I am so big now people need a periscope to look around me. I’ve seen friends. I’ve hung out at home with the dog. I’ve helped DH with his studies and even picked up my own books once or twice. The online book thing is going well. I’ve had a TON of appointments at hospital.

And I have not slept. I’ve had my medication upped twice in the last three weeks.

Insomnia is a killer for anyone at the best of times. When you’re lugging round an extra 20 kilo and your lithium levels are falling then it becomes a playground for dark creeping thoughts in the middle of the night.

I was very resistant to my medication being increased the first time round. I’ve got a little one to think of inside me. I am the kind of girl who deals very well with a lithium count of 0.4-0.5ish. I don’t deal well at the higher end of the range. I was therefore pretty upset at the thought of more drugs.

As it turns out it is, of course, fine. Basically the volume of fluid in your body increases, which in turn then decreases the potency (for want of a better word) of the lithium in your blood stream. I was reading at 0.2 which is basically nothing. But, because I was irrational and tired and lacking in hormones, I didn’t make the connection to a dip in lithium altering my perceptions. It wasn’t until I was sat with my psychiatrist that I realised all those thoughts of having a suicide pact with DH so he wouldn’t die before me were not in the normal way of thinking.

Because those thoughts weren’t along the lines of ‘oh, I’m going to kill myself now’, I didn’t think anything of it. I thought it was normal to plan my death, and because I was thinking waaaaay ahead into the future, such as in my sixties and seventies when it might have happened naturally at some point anyway, I didn’t see a problem with it. I created elaborate schemes in my head about euthanasia (legal in The Netherlands), car crashes, train accidents, travelling somewhere where there was a high incidence of plane crashes, so I wouldn’t have to live if DH died before me when I was old.

I also had increased anxiety, and DH retrieved me from the supermarket a couple of times as I couldn’t cope with the amount of people around me. I started, for the first time, to understand what paranoia in bipolar really meant. I was convinced that people walking past me on the street were about to come and do me harm, and that I couldn’t trust the doctors and nurses in the hospital to do what was right for me.

All of it, my psychiatrist assured me, was completely not normal thinking. And all that was because of a dip in my lithium levels.

What was impressive to me was the rapid turnaround in my thought process once they increased my lithium. Eventually I went up to 1000mg per day spread out over five lots of 200mg. It was amazing how much better I started to feel again. What I found as well towards the end of my pregnancy was how high they wanted to keep my lithium count – as high as possible – to avoid any potential psychotic episodes immediately after the birth. I really am a girl who doesn’t do so well on a higher count, so it goes to show how massive the changes in my body were that being around the 0.8 mark was absolutely fine for me in my last month or so.

Throughout all of this, my baby, of course, was completely 100% unaffected by it. They are tough little creatures, babies, designed to survive some pretty extreme conditions. As an expectant mother none of that matters whatsoever so there is no point in trying to reassure yourself in that way!

I have also resolved to not be one of those mothers that dishes out completely useless advice. Unless you’re the one living it, it’s almost impossible to understand what someone is going through, so therefore the only thing to do is emphathise (as a bipolar mum to be you are not alone) and offer a shoulder of support. The only advice I will give is keep an eye on those lithium levels. If you start to suddenly see the sky turning purple with pigs serving champagne, find yourself plumbing the darkest parts of your brain, doom scenarios marching through on a frequent basis at 3am, or even convinced that the old lady in the apartment opposite you has a incredibly sophisticated camera setup just to record your every move with the ultimate aim of taking your baby away (yes, that was me to the last two), then please get to your GP or psychiatrist asap and talk it out. Cortisol is not good for our growing little ones and particularly not for you.

So, to sum up:

– monitor your lithium every week or two weeks, following your doctor’s advice to the letter
– try and sleep as much as possible. Rest during the day. Take it easy. Get someone else to do the hoovering/housework/walk the dog

And that’s it 🙂 Having a successful pregnancy on medication can be done and I am very glad I continued with my lithium.

It’s a boy/girl/alien/I can’t relate/guilt/aaaaaah

Firstly, I talk a tiny bit about sexual abuse in this post so please don’t read on if you think it might be too much for you. Not much as I am banned from thinking about it by my psychologist! but it very much relates to what I want to write about today.

And sorry it has been a little while since my last post. Somehow water got into my laptop and it wouldn’t work for a while. As with the miracles of technology here it is up and running again!

I have had time to think about what to write about next. As ever, so many words and so many ideas and limited space to write about it. I’ve also been extremely tired these last few days and had an unwelcome return to hg, along with a dip in my thyorid so it’s been a bit of a trying time.

What has been on my mind though throughout this is my baby. You may well think ‘well durrrrr, it’s inside you, how can you not think about it’ but really, it’s surprisingly easy to distance yourself in your head from what is happening to your body. I mean, people do it all the time if they are over/underweight etc. So even though your belly looks like Mt Versuvius, the baby’s kicking you in the bladder in the middle of the night and you get out of breath after walking 5 paces, still it doesn’t feel real.

Something that has been real, however, has been finding out that it’s a girl. As some of you know, I was abused by our (female) housekeeper as a child from the age of 3-6. Basically as soon as she could get me on her own once my mum left my dad. So, no detail here on what happened as it isn’t relevant (and as said, I’m not allowed to think about it). Also it had the knock on effect of making my relationship with my mother even worse.

Mum engages in what DH describes as ‘psychological warfare’ which, for me with bipolar and resulting Borderline Personality Disorder traits from the abuse, meant we did not have a happy time of it with each other growing up. Mum has an ambivalent relationship with women doesn’t like them but is attentive to men to the point of fawning all over them. So I grew up with that.

Before you think she’s an evil bitch, no she isn’t. She is damaged in her own way, but the problem is she can’t see what she is like because no one has ever told her. As soon as this twigged with me it was easier to deal with. I got an education and I got out. After spending most of my 20s trying to please her, it wasn’t until I met DH and started to really understand me as a person and my illness that I could stop the guilt of never being good enough and begin to get angry about what happened, and start to heal myself.

So, this is not about the woes between me and my mum or my abuse. It’s about the impact this had on me finding out we were having a girl. I was at first elated, and then terrified. The fear was awful. And memories of my abuse resurfaced.

Before finding out the sex of our baby at 20 weeks, I was convinced it was a boy. I don’t know why. I just didn’t want to think of it being a girl. Part of me also wanted a mini-me of DH 🙂 but a large part of me didn’t want to think of what it would be like, or what I’d have to face up to, if it was a girl. Which was very funny as I knew DH wanted a girl and before falling pregnant we thought it would be a girl we’d want first. We even had the name ready.

When confronted with the ‘it’s a girl’ news I then went into hibernation in my brain. I was listening to hypnotherapy cds telling you to bond with your baby and all I got was a white, blank wall. I got flashbacks of what happened to me when I was little. I thought of the misery I had growing up and as a teenager. And I was just plain scared.

I hadn’t seen my psychologist for a while so DH made me call her to make an appointment. It was such a relief to talk to someone about it and she immediately asked how I felt having a girl. Being able to share my fears about my daughter going through exactly what I went through was a relief.

Firstly, I now know rationally that I won’t be an abuser myself. The idea makes me want to puke. But there’s that tiny seed in your mind that has read online that those who are abused turned into abusers. Even writing this freaks me out a bit. Fortunately my psychiatrist said that was not the case and just the fact that I found it abhorrent meant that I would be ok. There’s also that fear that other people will think you’re abusing your child. I still  have that a bit but DH has told me that I’m being ridiculous. All this irrational stuff that I think I know is now irrational and will be ok.

The other thing is other people abusing your child. I know that the majority of kids never experience this. I know though that abuse is hidden and happens far more than we realise. DH and I have talked about it and he says, very sensibly, that all we can do is educate her to look after herself and that she trusts us to come to us with anything. He points out that I never had that trust or stability at home so by providing a loving environment we can minimise the risk to her.

As for what happened between me and my mother, well I was terrified too of projecting onto her my own experiences. I think we try so hard not to be our parents anyway, but here I really was trying to go the opposite! I started to post on a few threads on Mumsnet that really helped. It was good to see that other women found having daughters very therapeutic in helping them get over their issues with daughters. It’s silly, I have close female friends and I know I don’t dislike women the way my mother does. What my psychologist and ladies online said was that having self awareness was half the battle in ensuring history doesn’t get repeated.

And I was told to not worry so much 🙂 I felt soooooo guilty that I wasn’t some beaming earth mother. I felt like I had something growing in me that was so far removed from my sense of reality.

Interestingly, the memories of abuse returning coincided with my lithium levels dropping around the start of the year. Finding out I was having a girl was a trigger for memories I had ruthlessly repressed my whole life and boy were they buried deep. I was retreating back into my little world of doom scenarios, paranoia and clawing blackness. This was punctuated by memories that left me feeling like I’d been punched in the gut. I was so paralysed sometimes I couldn’t move. AND the hormones of pregnancy meant I felt emotionally all over the place and wasn’t able to cope with the most unwelcome, intrusive thoughts returning.

Fortunately my psychiatrist bullied me into taking more lithium. As my levels started to rise again, so my control returned over my memories. I developed techniques with my psychologist to distract myself when the thoughts of abuse came back. Every time I would associate an action I’d do with my baby with abuse, I would think of all the positives and doing things with DH rather than the fact that act had led to my situation. Or, I just think to myself ‘I’ll deal with it when it happens’. It’s very dangerous to have psychotherapy when pregnant – it’s not allowed. So during this time I have to distract myself until I can deal with these new memories at an appropriate time.

I’m much more in control now. I’m doing pregnancy yoga more and find myself finally getting more excited about having a baby. I couldn’t relate to it for ages and ages. But now she’s kicking and moving around it’s easier (and scarier haha) to think ‘wow I’m having a girl’. I can’t wait to cuddle her and tell her how much I love her. I can’t wait to tell her how wanted she is. I send those thoughts to her all the time and DH talks to my belly telling her how excited he is to play with his baby girl in three months. I can’t wait to read to her some of my favourite books that were mine as a child, take her to absorb all the museums and galleries and just mooch around in summer looking at all the beautiful architecture and canals and clogs and stuff 🙂

Still scared. Still worried I’ll turn into my mum. But I don’t think that will happen. I will make mistakes. But what I will let my daughter know is that she is loved, wanted and will always have stability, safety and security with her parents. I never had that and if that’s what I can provide to her then to me that means more than all the playstations, clothes and toys in the world. Material counts for nothing – love and being loved is everything.

Hyperemesis and bipolar. Lucky us!

Please note that I talk a little bit about a psychotic and self harm episode in this post, so don’t read on if it might cause any problems for your condition.

There’s so much I want to write about, so much I want to share, that I almost can’t get the thoughts out coherently to write something that is a) sensible and b) legible. But something that affected this pregnancy so badly has been on my mind.

Staring into the mirror today, I wanted to write about diet, exercise, pregnancy, bipolar, and all the links between it. This was inspired by the row of acne that had appeared seemingly overnight on a person who has never struggled with it ever before. But I want to have more of a think about that post as I firmly believe diet plays a HUGE part in having a negative impact on modern day living.

But not today because that requires thought and some good research to back up my theory.

I am thinking of depression today. I’m not feeling low emotionally; actually pregnancy and impending motherhood, combined with not having to drag myself to a job I hate every day, has meant I’m probably mentally the well-est I’ve ever been these last few weeks. It’s a lovely feeling. But I’m bone-gnawingly tired. It eats away at every single atom of my being. Pregnancy tired is like nothing I have ever experienced before.

Combine this with struggling with hyperemesis which, for the ease of writing I’m going to refer to as HG throughout the rest of this article, it’s been a massive hit of physically sick as a dog, mentally unable to think straight and exhaustion combined with insomnia.

So, what is HG quickly? It stands for Hyperemesis Gravidarum which is an extreme form of nausea and vomiting in pregnancy (NVP). NVP is very common, and around 70-80% of women will experience it in some form. With HG, however, it is relentless nausea and vomiting, with women experiencing sickness 10-12 times a day as normal and unable to keep any liquids or solids down. 1 in 100-150 women will need hospital admission as they are so severely dehydrated or malnourished.  Just to reiterate, that is NOT morning sickness! Morning sickness also subsides by around week 12 of pregnancy, whilst HG persists in varying forms throughout pregnancy and, sometimes, even after birth for a few weeks.

HG affects 1%-3% of women in pregnancy according to the excellent support network in the UK, Pregnancy Sickness Support. Think of all those women all round the world having babies – a quick Google says around 130 million a year – and then think, of that around 4 million are wrapped around a bucket for most of that time, unable to do much apart from suck on an ice cube.

I’m part of a thread on Mumsnet which has been a life saver. The wonderful women of the Hyperemesis thread, run by a quite marvellous mother hen who ensures there is always a support space for mums to be to hear from others and just have a moan. Other posters generously share wisdom on medication and what to do to get through to the somewhat pigheaded medical community what women need to do to get treatment.

It’s hard to explain the toll this has on you. Don’t be sucked into the marketing bullshit of pregnant women serenely eating lettuce and drinking smoothies whilst doing Tai Chi in Hyde Park on a misty morning, playing with their children and running marathons. I know you exist somewhere you lucky things, but it is not really like that when you have HG. You LOSE weight. I actually shrunk in my first trimester which was alarming enough. You cannot eat a thing. Your tastebuds change on a daily basis and I was devastated to not be able to enjoy a Ribena any more; it was like something had died in my mouth. The thought of going near toothpaste or a toothbrush is retch-inducing so you’re at risk of cavities due to no dental hygiene for several months. One poor woman tore a face muscle vomiting, another developed an abcess and several of us pulled stomach muscles with the force of our sickness.

And this goes on for pretty much NINE months. Some women are unmedicated. Doctors refuse to administer even the most basic antiemetics. I swear to god if one more person in my family had recommended ginger to me I was going to cut them out of my life. Women are told by supposed medical professionals to change their diets or buy sickness travelling bands, wtf???

There is a persistent lack of understanding that medicine is ok in pregnancy so long as it is monitored. There are horror stories of women being so sick that they are in hospital being advised to have an abortion because there is nothing safe to give them and their baby. Which is, quite frankly, rubbish.

I was very fortunate. Around eleven weeks I couldn’t cope any more and went to my GP who immediately prescribed me a front line, commonly used drug called Emesafene, essentially an antihistamine with vitamin B6 after checking it didn’t interact with my thyroid medication and lithium. Now, this is in the Netherlands so if you want to know what might work in your country or what to ask your doctor about there are the usual links below. Whilst I was working I took two a day and it just about powered me through the day, along with probably far too much diet Coke and Nutella sandwiches, along with sipping ice cold tap water (I went off bottled water!) which was all I could eat or drink. It didn’t really ease up until I stopped working and was able to properly rest.

What has any of this to do with bipolar or depression you may wonder? Well, consider the impact that has on your body. I’m one of the fortunate ones who a) got a GP who knew what to do and b) got medication that worked. You’re permanently feeling like you’re about to puke or doing the deed itself. Your body is very weak and you’re trying to at least keep down your pregnancy multivitamin so the baby develops ok. You’re off work and potentially with an unsympathetic employer so you are worrying about that. You’re unable to get out of bed or, if you’re lucky, you’re lying on the sofa, unable to see friends or family as you are in effect housebound. And chances are you have a GP who tells you to buy a packet of Ginger Nuts and you’re saving your precious energy stores to battle with them on your next visit to beg to even try some of the basic medication that is available and within the NICE guidelines. And you’re worried about the impact all of this has on your growing baby.

Stress + HG = high chance of prenatal depression. Prenatal or antenatal depression affects as many as 1 in 10 women. A dear friend of mine had it severely for most of her pregnancy. Recently we discussed on our thread how having hg was impacting on our moods. We all felt that we had been so low at several points, plus the stress of having to battle with the establishments both medical and work related, meant that most of us had had some form of depression at some point. This had taken its toll on partners and those inspiring women who were on baby no 2 or even 3 and had young children who were being impacted as well.

Stress + HG + bipolar = high chance of prenatal depression + serious chance of bipolar episode. I should know as I narrowly dodged this bullet.

Because of my bipolar and the fact I’d had a miscarriage, my very nice GP in all good faith referred me to my local hospital. Neither I nor she realised at the time that all my care would be transferred to the main university hospital in the city and be led by the perinatal psychiatric team. I’d gone to see her to get an increase in my thyroid medication which was duly done, and off I trotted to the local hospital expecting to be told I’d be scanned from around 8 weeks when there would be the best chance of seeing the foetal heartbeat. To my bemusement and slight fear/paranoia, I was told they wanted to see me immediately and I would be scanned from six weeks onwards. This totally freaked me out, and I didn’t know then that they had no experience of dealing with patients with psychosis or bipolar or any form of mental illness.

My scan at six weeks showed not much, but that all looked quite normal. My scan at 7 weeks was a different story. I had by this point seen the perinatal psychiatrist and been told I would be switching hospitals, but that there shouldn’t be any harm in going to the last planned scan in the meantime. How wrong we all were. I was told by the dumb bint calling herself a doctor that my lithium was just for my ‘mood’, my blood pressure was too high (I had just come off a flight from London after being away for a work event and had sat in the waiting room for an hour and a half as they were so delayed), and that my bowel was too full for her to see anything on the scan. She then went onto say that she couldn’t tell if it was a ‘good’ pregnancy, there had been no growth and that I should be prepared to miscarry and to come back in a week. Bye bye and out the door in 5 minutes DH and I were pushed.

To receive news like this when you are full of pregnancy hormones is horrendous enough for any woman. If you add to the mix the chances that person can have a major psychotic episode then it’s pretty devastating. I went home numb. I couldn’t sleep. And I started to hallucinate in the middle of the night, punching my middle as I wanted it ‘out of me’, that this ‘dead foetus’ was spreading intense black all throughout my body. I could feel it skittering over my skin like a million black bugs. It was enveloping me, choking me and I needed it gone. I was scratching at my arms, scratching at my stomach and fortunately hadn’t managed to hit myself that hard in the lower abdomen before sanity in the form of DH stopped me.

Thank my stars that DH woke up and sat with me for the rest of the night. Poor man had to deal with the news himself, as well as the fact that his wife was convinced she had been taken over by seeping black death.

We went back the next day as I wanted a pill to ‘get things going’ and have the black death out of my system. I was convinced the baby was not to be. The doctors refused to see me, said there had been slight growth and everything still looked on track to be fine, it was just too soon to see a heartbeat. I stood there in this reception area in floods of tears, unable to understand why people couldn’t make it all go away. So I refused to go back there and had received my appointment to see the specialist gynaecologists and thyroid experts at 13 weeks. I would wait until then. I managed to see my psychologist that day who calmed me down, and also my regular psychiatrist who both were wonderful and talked me around.

I decided that my body would tell me what was right and wrong. If it was not meant to be then I knew from painful heartbreaking previous experience what would happen. And that my body would take care of it. I hoped I hadn’t harmed it, and was creating elaborate schemes in my head to get back at the stupid consultant who had left me in such turmoil. Equally, if the baby was actually growing, then I would wait and see what my consultant had to say at the next appointment.

In the meantime, my HG kicked in. Massively. My GP whom I wept all over when prescribed my medication, couldn’t understand why I was so worried as they had, he felt, been wrong to scan me so early. The fact that I had such awful symptoms that were getting worse rather than better was, he said brightly, a good sign!

Those six weeks were the darkest things had been for me for a very long time. I had no idea if my baby was ok or what was in me. I could barely move without needing to be sick or experiencing such nausea. I couldn’t sleep properly in case my death demon came to visit me in the night so was exhausted. I had to drag myself into work, and then tell them, well before I was ready to do so as I was so sick. I hated everything, and mainly hated myself. And I didn’t want that negativity to be passed onto my baby. I was worried about my lithium impacting the foetus. I worried my thyroid would fail again and the baby wouldn’t be. Such anti energy. It’s not good for us.

Obviously things turned out fine. I cried the whole time waiting for the doctor and cried when DH explained what happened. Actually I cried all day and it didn’t sink in really that all was ok until I reached my 20 week scan and saw a normal, healthy baby. To this day I can’t look at the scan screen without looking at DH first for him to tell me it is ok.

First trimesters are the worst. They don’t have to be. There are so many women who are just in raptures about their baby and sail through pregnancy. But for us with HG it is a long, long road to nine months and pregnancy is terribly tough. We can’t wait to give birth and get our bodies back. For those of us with bipolar as well, we can’t wait to be able to bring our brains back from the brink. I’ve teetered several times and it is only through the strength of my DH and finding fun things to focus on such as my dog that I’m still here.

Please don’t underestimate the impact of pregnancy sickness on your mental health. Make sure you go armed with information so you can get the medication you need to stop the vomiting. Taking care of yourself physically and mentally when pregnant must be your main focus. If that means stopping work like I did, then do so. Nothing is more important than being very, very nice to yourself. In the wise words of the Hypermesis Support ladies, this shall pass.

Links

Pregnancy Sickness Support

http://www.pregnancysicknesssupport.org.uk/

Pregnancy Sickness SOS

https://sites.google.com/site/pregnancysicknesssos/

PANDAS for pre and postnatal depression

http://www.pandasfoundation.org.uk/index.html

My baby will be damaged blah blah blah

I was going to write about something else today, but it requires me putting on my new yoga dvd and actually doing it. I’m a bit too comfy on the sofa to have gotten around to that so far! I was looking through images for my page to make it a bit more attractive (expect to see many theme changes over the coming weeks as I have a playaround), and I saw so many pictures of bumps and pills it really got me thinking about medication and bipolar. It also is helping me build up to a big post around the psychology of trying to conceive which I hope to write about soon.

But in the meantime, here’s the question of the day – how much harm do bipolar medications do to the conception process and the unborn baby? As ever, links to relevant articles will be at the bottom of this blog.

For many, many years, women with bipolar disorder were told not to have children. It was too dangerous, the risks were through the roof, we would pass this onto our kids, they would be blighted forever with cardiac issues, psychological issues, we wouldn’t be able to look after them…..the list goes on.

Fortunately, we live in more enlightened times where a woman has more control over her decisions and her own body. We aren’t treated like idiots because we have a mental illness. Ergo, we can choose whether we feel able to manage the rigours of family and child rearing and, in that process, whether we decide to stay on medication or not. I can only share things from my own personal experience (and please note that I’m not a doctor so it’s all what I have been advised/experienced/read up about), but thought I would tackle this in a two-phase article; before pregnancy and during pregnancy.

Before I begin, just to put my medication into perspective. I live in a country which gives out paracetamol as a cure all for every illness and to get any extra medication is a big, big deal. The Dutch are big on self-help, medical intervention only where absolutely necessary, and not medicating unless it’s super serious, much to the horror of us expats who move here. I used to long for Boots and Superdrug where I could get something to fix any ailment I had over the counter, My poor DH, for example, had bad tonsillitis for two weeks and was told to go home and it wasn’t until he went spotty with a rash all over  his body that they finally gave out antibiotics. It took me a LONG time to get medication for my thyroid as well which was more frustrating as that I found more debilitating than the bipolar in some regards.

On the flip side, however, I am glad I am not on a huge drug regime. I was very reluctant to take anything and am glad I finally gave in and tried the lithium out. I have responded very well to it and, fortunately, have only had one psychotic episode which we were able to control without drugs since. I will talk about that another time though!

Pre-pregnancy

I could look at this in two ways but actually they all end up as a positive. At the time, I was on 600mg of Camcolit (lithium) a day. I’m definitely a ‘low dose’ kind of girl. When they increased me to 800mg I was sick as a dog and it made all my bipolar symptoms worse. I spent a week shivering at my desk convinced the whole office was out to get me!

I am pretty sure this accelerated my thyroid collapse. Now, all my research and speaking to my doctors told me that lithium wouldn’t cause miscarriages or make me infertile. On the contrary, as my moods were more stable so were my hormones, freeing up my body to focus on producing the right hormones at the right time and bringing me more into balance.

As for my thyroid, I really really need to do a long old post on this. But I firmly believe this is the reason that my miscarriage happened and why I struggled to conceive for so long. How else can I explain when, being put onto 125mg of levothyroxine, I was then testing positive six weeks later? I had made life changes as well, such as going gluten-free (again I will explore this later), and being generally more positive and happier. I had also done a lot of positive thinking exercises which again I will write about later. Given that I live with something that affects my mind, I am a strong believer in what the brain can do!

I should also comment that I didn’t discuss really with my doctors that I wanted to get pregnant. The scant advice I have read for women wanting to start a family with bipolar is to talk to your psychiatrist or GP. My care team certainly knew I was ttc, but I didn’t get any extra advice apart from that they would need to do more blood tests and I would be referred to the perinatal psychiatric services at the main hospital here. I suppose I should have taken their lack of concerned-ness as a positive sign that they weren’t phased at my wishes to have a family and if they thought there would have been any issues then it would have arisen.

What they did say after my miscarriage was that my thyroid would have played a part. So again, there you go. I can’t emphasise enough how important it is to keep an eye on those TSH and T4 levels if you want a successful pregnancy.

So, did taking lithium affect my conception chances? It’s a resounding NO.

Pregnancy

Now, this is where there is a ton of advice. And a lot of it I think VERY scary and intimidating and unnecessarily so. I feel so fortunate to be in such a no-nonsense country. I have stayed on my lithium and confess to gibbering with fear at every scan, terrified that I’m going to see a problem with my baby’s heart. That is the largest risk factor with taking lithium and one that was, until very recently, considered very high risk.

But why continue with medication? Well, mainly to stop another episode. We have to have ourselves in balance to deliver a healthy baby to the world. There’s also a 1:4 risk of postpartum psychosis immediately after the birth. There’s also a 1:4 chance of postnatal depression. So yep, that works out that, of all the ladies with bipolar having babies and giving birth, there’s a whopping 50% chance of a serious episode right after the birth.

Recent research that came out (I think) of the Netherlands (yay) showed that the chances of the baby being affected by lithium were much lower than originally thought. They are, I have been told, 1:2,000 which is less than 1%. My consultant also said he’d never seen a baby with the heart defect in all his years of practice and he must be in his sixties. So I felt pretty secure in taking it. I was actually more worried about my thyroid not working properly so I was very careful about taking that little pill every morning and following the instructions to the letter.

What I found funny was that the NHS do not recommend taking lithium in pregnancy which really surprised me. How can drug regulation and guidance be so completely different from country to country in the EU? But that’s a blog article for another day….

My medication got spread out so I had to take 200mg 3 times a day at regular intervals. It helped as the lithium dosage needed to be spread evenly so as not to cause a spike, which would have more impact on the growing foetus. I had blood tests every four weeks to monitor both thyroid and lithium and regular checks for liver, glucose, antibodies, and I have no idea what! For my first two rounds of blood tests they took 8 vials. For someone who hates needles this was really quite a trauma, particularly when you have a noob nurse digging around in your arm saying there’s no vein when you know that’s your ‘good’ arm!

Anyway…..

Basically, what happens in pregnancy is that as your volume of liquid goes up (so far I have gained 14 kilo, sadface), so the effectiveness of your lithium goes down as it decreases in strength in your bloodstream. We have to maintain a steady supply of lithium above 0.4 for it to be within the clinical treatment range. I’m going to talk about depression and pregnancy and hyperemesis in another post, but suffice to say it is horrible. I couldn’t do anything but focus on keeping a bit of water down. Around Christmas much to my relief my work contract finished and I was able to rest and recover from the hyperemesis. Except I was still very down. I was very frantic, I was very anxious. I was filled with nervous energy and no outlet for it. I hated EVERYTHING. Nothing was good enough. I wasn’t good enough. I had doom scenarios in my head, and would go from A-Z in less than a second, convinced everything was going wrong. I started behaving erratically again. I was convinced every man and his dog were out to get me. DH was beside himself with worry. And I was suicidal. These were such unwelcome emotions that I hadn’t experienced for over a year, I was devastated. And I was powerless to stop them.

Some part of my brain acknowledged that possibly maybe my lithium might be a bit low. It wasn’t until my later round of blood tests showed that it was at a paltry 0.2 in my bloodstream that I realised where it was all coming from. Reluctantly I agreed to an increase of lithium to 800mg a day, taken 4 times a day in 200mg doses. After all, I had read about the devastating effect of lithium on babies, right? Awful stuff. Why would I pollute myself with that?

I saw the head psychiatric honcho at the hospital who made me cry he was so nice. He said that the hormones in my body, namely the stress hormone cortisol, would have such a negative impact on my foetus, far more damaging than taking lithium, He said it was important to keep me in balance so the baby would be able to grow and thrive. They couldn’t do that unless I took my medication.

That was three weeks ago. Lithium count is now 0.35 and I am a different person. DH said it was like night and day again and was so glad to have me back. My liver is doing strange things but apparently that’s just because it is working harder to process the extra lithium.

So, is it worth it, this drug taking whilst pregnant? 

Yes, 100%. I wish I could advise on other types of drugs as I know there are many that aren’t safe. Particularly some of the anti-psychotics. But what I can say is that lithium is working well for me and I’m so glad because to be back in my black space was beyond awful.

This is already a bit long, but I am going to do a separate piece on the risks of lithium compared to other things during pregnancy. You have to do what feels right for you. Be guided by your doctors but also by your own instincts. Do you want to go to those crazy highs and crushing lows during pregnancy? We are at such risk and, if like me, you are already super protective of the growing life inside you, you’ll do anything to make sure your baby is ok.

So go with it. Don’t google stuff. Don’t feel pressured by idiots who get all sniffy at you taking medicine. Or your family. Or anyone who is basically uneducated about bipolar which would be (sadly) the vast majority of the world’s population. Do what is right for you. If you think you can manage without medicine then great, go for it. But don’t feel bad if you keep taking your pills.

Links

Bipolar UK – pregnancy leaflet
http://www.bipolaruk.org.uk/assets/uploads/documents/information_leaflets/bipolar_uk_bipolar_disorder_pregnancy_childbirth.pdf

OTIS – Lithium and pregnancy
http://www.mothertobaby.org/files/lithium.pdf

National Alliance on Mental Illness – Managing pregnancy and bipolar disorder
http://www.nami.org/Template.cfm?Section=bipolar_disorder&template=/ContentManagement/ContentDisplay.cfm&ContentID=17899

National Center for Biotechnology Information – Fetal, neonatal and developmental outcomes of lithium-exposed pregnancies.
http://www.ncbi.nlm.nih.gov/pubmed/22000820