No talking please

Please note that this blog post discusses suicide so don’t read on if that could be triggering.

Today was a hard day and tonight is the hardest. We all have been lain low by a stomach bug the last few days and maintaining a cheerful demeanour is pretty hard going. Fortunately my daughter and I have had the place to ourselves for a bit to just veg, watch baby tv and play on the floor lots. My bones have ached and I felt sooo heavy. But today my head decided to join in. I literally could not move this afternoon after our nap and had to lie there in bed with eyes closed letting her play next to me. She thumped me awake every time she needed something. Bless her little heart. I have the most epic baby ever.

Motherhood with bipolar (and whatever else I have) is very tough, there is no denying it. It’s infinitely rewarding but it is hard work as well. You have the littlest thing in the universe totally dependent on you and it takes an incredible amount of will sometimes to power through and not lose it completely.

So many times I have sat and stared mindlessly out of the window wondering how to make the pain and thoughts stop permanently. Then I look down to see a little hand on top of mine, complete with a beaming smile on the cutest face ever in front of me. Just as if she knows I need reminding of all the many reasons why she needs me to pull through and be there for her. There is my reason for living right in front of me. There is the one thing that instantaneously banishes the pain from my head and my chest.

See, I exist in a little bubble. It is just me and my baby and my sole focus and reason for being is to take care of her. We play, we laugh, we smile, we cuddle, we nap together, we think of exciting things to eat and do together. Aside from a couple of major stressors – which I have mitigating actions to reduce said stress – life is really quite lovely.

When the outside world intrudes, like having to pay bills, speak to anyone on the phone aside from DH (or be conversational in general for that matter), go to the shops, apply for jobs, basically anything that removes me out of my baby care bubble, I completely freak out. I realised the other day that I can only go to shops that I have been previously with DH or some other trusted friend (I have a couple here who know what I have). Then I can return to them on my own. Sometimes I am ok to do new stuff but mainly I can’t cope.

I also realised that I cannot talk to people on the phone any more. I can’t even talk or Skype to my best friend or my parents. The only person I can talk to is DH. I don’t think people understand. I cannot talk. I cannot do it. I have a barrier in my head that needs to be removed. It is a coping mechanism I have developed when under extreme stress and has happened before and far more extreme than this so I am not overly worried for now.

By the way, I know this is not normal. I have an appointment with my psychologist on Monday whilst we try and switch me to a different psychiatrist (the current one even got my prescription for lithium wrong for god’s sake which I discovered at the pharmacy yesterday!). I know I don’t want to live like this and I think I know where some of the stress factors are but it will take a little while to work those out. In the meantime my coping mechanism is to retreat further into my bubble with me and my baby. (Just to clarify, she is in no danger and is well taken care of :) I am surrounded by people who I know would dive in at the first moment if they thought something was amiss with her care. We have a pre-agreed intervention deal in place if necessary. The funny thing is though that I was worried about the most in terms of impacting on my mental health yet she is the one thing above all else that prevents me tipping over the edge, bringing me such peace.)

Three things happened today that have made the walls of my bubble even firmer.

Firstly, Dr Phil should be ashamed of himself. I had the misfortune to have to sit through the intervention special with Whitney Houston’s stepson who they were trying to save from suicide attempts. Aside from the fact that my mother in law is oblivious to how distressing this is for me to see and has no clue about the impact this can have on someone who has regular, sometimes daily conversations in her head about death and how to achieve it, to then hear him tell this incredibly vulnerable young man who was clearly on quite a cocktail of narcotics and alcohol to ‘man up’ was one of the worst things I have ever heard or seen. Also I have zero interest in the life of Whitney Houston or her family aside from the fact I think the whole thing a tragedy, so to watch some intervention was just blergh. My daughter felt the same – she refused all food so we chucked on some clothes and took the dog for a walk. I had to escape.

Secondly, whilst out on our random evening excursion, the lift broke on the top floor of the mall so I couldn’t get back down the stairs with our ridiculously heavy buggy. I tried and tried to call DH to ask him to come and help us, but he was away helping his mum. I couldn’t talk to people (part of the above) to ask for help, but in a small chink of light moment I trotted off to McDonald’s to sit and wait with her until DH could retrieve us. So at least I wasn’t in a panic. But it didn’t help me improve my state of mind in any way. And the chips were gross.

Thirdly and finally, and also the one that leaves me the most upset, is that DH and I had a row. He’s had a migrane for three days in a row and the stubborn man refuses to call in sick as he doesn’t get paid. Really, I couldn’t care less about 50 euro or so, skint as we are. Honestly it would make little difference. We need him well. It is a regular argument we have, where I am expected to do all that I can to maintain my mental and physical health yet the shoe is not on the other foot. Heart attacks and strokes kill just as surely as my tablets do (for he is very overwieght and unfit right now). He is so focussed on trying to provide for us he is of course running himself into the ground and getting very head in the sand about things and missing out on precious time with his daughter, who he misses terribly during the day. I love him all the more for all that he is trying to do but he needs perspective.

He also was supposed to join a carer’s support group which he of course has not done yet. In Scotland he nearly lost it himself as he couldn’t cope with caring for our daughter as a stay at home dad and caring for me and my spiral into whatever mad clanging metal spikes I had shooting out of the gound going on in my head. Which is so understandable. But now, as the breadwinner, carer of me and hitting the ground running with the baby as soon as he gets in, I think he needs the support more than ever from an external group. Except he as usual puts himself last. I don’t know how to help him get over that. I am a proper nag about it all but there is only so much I should be doing on that level before it’s a broken down record. That is, as with so many other blog posts, another topic in itself.

We didn’t row about that, however. We rowed about how I was going to apply for my benefits. And this is the first time I thought, wow, you don’t understand. And the first time I refused to carry on talking to him. He was getting very frustrated with/at me and didn’t get it when I said I couldn’t talk to the benefits people on the phone. I couldn’t do it. I can’t do it. He was saying, I’ll be with you I will call and if you need to speak then say so and I said I can’t.

(Quick explanation – basically hooray Dutch bureaucracy, you have to call in sick to the unemployment office who then send out a supposedly independent doctor – the service is known as ARBO – to assess you. The word of your own psychiatric team is not enough. Your own doctor cannot sign you off although they will liaise with the company doctor. I don’t get the point of it as from what I have heard it is all about them making money, but there it is. If you are employed the same thing applies. Don’t get me wrong, I am grateful that I am eligible for some form of support but the whole thing terrifies me. It isn’t set up at all for people struggling with mental health problems and is quite intimidating to me. When I interpret something as intimidation I completely shut down.)

And when I said I can’t, and how does it work if someone is in hospital with a stroke or psychiatric admittance or cannot bloody well talk then there has to be an alternative. And he started swearing saying I don’t know, this is their process, blah blah you just have to be there.

(Part of this is, by the way, a very Dutch thing which makes me chuckle a bit. They are almost as process-driven as the Germans and anything that requires stepping outside of the process or questioning the process (particularly if one is not familiar with said process in the first place) is met with thorough confusion. It can be done of course, and normally in a convoluted manner, but there is a definite cultural clash sometimes between the two of us. We Brits are somewhat more flexible and a bit more ad hoc I have found – which drove DH bonkers when we lived in the UK!)

I found him quite aggressive which he is never normally. The aggression was absolutely not targeted at me to be clear – he would never do that. It was him raging at the situation, complete with migrane, feeling swamped and overwhelmed and thoroughly unwell, fed up at living with his parents and the lack of progress at moving back home with the bank providing its usual level of Dutch customer service and not contacting us (ie crap). And the uncertainty of our finances and the future of them. And on top of it all, wanting to be with his baby and his worry and anxiety over my mental health. And no clue how to fix any of it. Basically everything.

He’s bogged down in the hopelessness of it all and gets stuck in a rut. He finds it hard to pull himself out.

I see all of this. I have seen it before. He can’t even blow his top because his mum is next door or relax because his computer screen will wake the baby up. He needs rest, sleep and downtime.

But I can’t engage with it tonight. I sent him away. I told him I couldn’t talk to him when he wanted to talk it out before sleep. His eyes were clouded with migrane pain and fever and lack of sleep from being up with the baby (who he refuses to let me do at night). He’s doing too much and I wanted it to all stop for now.

The problem is now I can’t talk. He doesn’t understand even though he said he does. No, he doesn’t get it. I CANNOT TALK TO THEM. How could he forget when I was in hospital and we only talked through text message? I am not as unwell as that right now but I can see how I could descend into that again, It isn’t something I choose to do. I would dearly love to gossip on the phone with my friends and let my baby wave at her cousins on Skype but I cannot do it right now. Don’t get frustrated with me. I am not well. So leave me be if you can’t accept the situation. But don’t expect me to talk. The only person I talk to right now is my baby and that’s to make her giggle. It’s not about being stressed. It’s way way beyond that. And no you are not in my head, you don’t have what I have and you can’t understand. It is completely irrational. There is nothing to understand except I cannot talk on the phone.

I will come back. I will talk again. But it will take time.  This is my coping mechanism. I only talk to trusted people and right now I don’t actually trust him because he isn’t himself. If that makes sense. Tomorrow it will be better. Tonight it wasn’t my husband standing there, just some angry caricature of someone resembling him. And that is what I don’t trust. They all have to understand I Can’t Talk. They don’t have to understand the why (even I don’t). They just need to accept it and do whatever it is to not force me to apply for jobs which is making me very ill some days. And not force me to talk on the stupid phone. I find talking so stressful. It’s bliss to be quiet.

God reading this back it all sounds so fucked up. I can make it to shops etc to do things but just saying anything meaningful apart from hello and how was your day is beyond me.

Let’s park today as a pretty shit day. Tomorrow there will be no Dr Phil to blot my horizon, the weather is looking nice and warm and sunny again and it will be another day towards getting rid of this horrid bug.

I am looking forward to tomorrow. My daughter and I are going to look for flowers and butterflies and visit a city farm for her to see the animals. I can’t wait. She loves chickens for some bizarre reason!

For now, there is Promethazine and some blessed sleep. Thank you to you lovely bloggers for letting me get this out on paper. I feel better already :)

Apologies

I just wanted to post an advanced and retrospective apology for the quality of some of my posts. Normally I can only type on my phone rather than laptop as a certain little lady come and plays bashy bashy on the keyboard. It is almost impossible to edit them properly until I get a spare hour in the day. My phone is also useless so I have to publish them before being able to edit them on my laptop so it ends up in a big jumble of words and ridiculously long paragraphs all out of order.

Sometimes I also get so excited and I just want to put it out there then and then :D

Thanks for bearing with me.  New phone in two weeks yay!

Contentment is…….ordinary

I realised again that feeling content comes in many different forms. Tonight it was the simple pleasure of sitting with my husband watching a programme. No stress, no parents around, baby happy and asleep, just the two of us doing something very ordinary. And it was also a healing process related to my past.

I think I finally like ordinary things.

So, to the show. We all know karma can be a bitch and a mighty one at that. But this evening I watched a wonderful documentary that moved me to tears and showed that good things can also happen to good people. Karma can be a sight to behold.

The music of Rodriguez first came into my life as a sixteen year old, feeling on the cusp of greatness as I moved to the last two years of school. I remember it as a hot golden summer – my first job, my first real boyfriend, thin enough to rock a crop top and hot pants and young enough to not give a shit about very much at all. My boyfriend’s brother returned from a year in South Africa, full of stories and enthusiasm about this amazing country and raving about this artist called Rodriguez.

‘he shot himself on stage right after this terrible gig’ I remember him claiming excitedly. ‘he’s the soundtrack of apartheid and anti apartheid and Bob Dylan can go fuck himself compared to this guy. Everyone in the whole frigging country plays these records.’ I clearly remember the brother waving his hands with an eloquent third finger to Bob Dylan as he described this as-yet-unheard-by-us-artist. One friend was outraged at the sacrilege to Bob Dylan’s name – a man he revered so much he wrote on his Biology A level paper to one question ‘the answer, my friend, is blowing in the wind’ before walking out and going to get stoned.

It’s amazing how music can evoke such clear memories. Until a couple of days ago I had clean forgotten. I’m also surprised there isn’t the usual sting to the memories.  I didn’t wince as I usually do, but for the first time was able to look back at a particularly turbulent time with fondness.

Anyway, we were of course agog to hear anything which was against the establishment (I was in particular very heavily into Sepultura and Rage Against the Machine at the time – my prized possession was a shirt emblazoned with some of their more infamous lyrics).

I remember it being a particularly balmy summer evening as we sat on the beach and he put the cassette in and pressed play. I had my feet digging into the sand and was watching the sea, slightly zoned out to everything around me. Little known to me at the time, I was slipping away from my first mania into my first truly severe depression and I recognise that zoning out and detachment as part of the cycle.

Then, of course, I just thought they were being teenage boys waffling on about some dull artist and I was amusing myself in my head. Despite the detachment though, I was listening to the brother’s story about Rodriguez and I was intrigued to listen to this music that was the soundtrack to a generation.

It wasn’t at first my cup of tea. But as the summer melted along and there were many more long drives and late night sessions, with Rodriguez pretty much permanently on the music player, I grew to love the songs.

As I grew up and left home to find my own path, I forgot that long summer. Until I moved to London and lived with a bunch of South Africans who also had it on permanently. They were able to explain how interwoven this guy was into their fabric of life and I enjoyed the revival of Rodriguez’s music.

I still thought he was dead though.

And as time passed, I forgot again until checking out the very excellent a-z posts by blahpolar who mentioned Rodriguez. And that he was very much alive! Thank God for Spotify which meant I was able to play the albums and enjoy the music almost instantly. I was thrilled to see that ‘Sugarman’ alone had over twelve million listens. I was also fascinated in the story, particularly as it reminded me of such an instrumental summer in my life (I left home shortly after another blazing row with my family), and the intrigue around his identity was a mystery.

One of my many new things to do (along with getting pink hair) is to listen to music I really enjoyed before my ex and illness sucked the life out of me. It was such fun yesterday to walk along the Maas with my baby asleep in her pram, on a glorious spring afternoon, singing along to an album I had memorised so many years ago. There was even an award-winning documentary made about Rodriguez, his story had become that famous. How had I lived in such a bubble all these years?

DH and I find little in common when it comes to viewing but he found ‘Searching  for Sugar Man’ for me – a documentary about the guy – and it was so nice to snuggle up next to DH and watch it this evening. We get so little time together these days, which is shortened even more when living with the in laws. Time together, alone, is so precious and to be savoured. Sitting drinking a cup of tea watching an interesting programme with the man of my dreams and the father of my child? I didn’t know a few years ago such a thing would even be possible. But here we are <3

If you only watch one thing in the coming weeks please consider watching this. It is an amazing story of how one man without even realising it impacted on so many people in a country that has gone through fire. I was crying at the end. Truly wonderful. A link to the trailer is below.

And the music is pretty good too :D

Thanks to blahpolar for the rediscovery of this great musician :)

Contentment is…..

I have decided to try and post at least once a week things that make me happy or content. Sometimes the happy buzz from bipolar is overwhelming so I will go for contentment.

Every day I feel at peace whenever I pick my daughter up. Now she is a wiggle monster it’s hard to just hold her but we get our moments in.

But that’s not today’s contentment bringer otherwise I’d just be posting that every day! It comes in the form of something brown and white and fuzzy snuggled on my lap whilst enjoying an afternoon cuppa and biscuit all tucked into my dressing gown. A moment of still in the day as my daughter gets much needed sleep, and me and my pooch get some bonus cuddle time.

It’s hard on the dog having a baby in the house. Firstly he wasn’t allowed near her whilst she was being a potato and unable to move, and now she crawls all over the place he doesn’t get a moment’s peace as she adores him and chases him round the house with her grabby little hands. He has learned to either hide away in a safe place we made for him, or they play chase with each other (which is the most adorable thing I have ever seen) .

What is hard is giving him the level of cuddles we did prior to the baby’s arrival. He struggled as a result – heck we all did. So we make sure now to give him lots of attention which I try and do in the form of sits and snuggles on the sofa. I’ve posted before about pets as therapy and these scenarios are exactly that. In a day full of activity and noise, these quiet moments with just me and my dog are a thing to treasure :)

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It’s pink!

As a complete aside, I have now got pink hair. It wasn’t meant to be pink but now it’s here I kind of like it.

Well, it’s not really an aside as such. Changing hair colour is quite significant for me. Hair for me embodies so much about me as a person that I’ve only just come to realise what a complicated relationship I have with it.

I always as a child and young person loved experimenting with colour. My mother forbade me to dye my hair until I was 14. In those preceeding years I was regailed with stories of the horror of bleach and permanent colouring of hair and how bad it was not just for hair but one’s place in society.

Of course when I was 14 I reached for the nearest hair dye, fearful of whatever I put on it and half expecting my scalp to fall off. Which it of course didn’t. But I never wavered from shades of brown, dark dark red or black.

Except once when I had highlights. And I was so terrified of being a blonde that I went brown again a few weeks after. In case my scalp fell off and I melted my head.

I would go to festivals longingly looking at girls who had the courage to bleach and colour their hair like a rainbow, using dramatic makeup and wearing amazing outfits.

I felt constrained by my work and my upbringing and trying to fit a mould that was not me. I realise now I was bought up to be scared of my own shadow, that every move of me being independent and asserting an opinion was crushed. Even as a student, prime time to go crazy with hair, I was terrified of what would happen and the censure I would receive as a result.

I had the same with my tattoos. I had them four years before my mother found out and that was because she saw them in a huge maternity top I had on last year. A 35 year old woman still afraid of her mother.

It dawned on me a few weeks ago that I don’t have those constraints any more. I don’t have to fit some role that I am not suited for. My mother doesn’t have that power any more. So on a whim, and with much encouragement from DH, I grabbed some packs of peroxide and super red hair colour and proceeded to bleach away the invisible chains I still had holding me back in the past.

My first attempt made me look either like Milla Jovovich in the Fifth Element or Cyndi Lauper in that Girls Just Wanna Have Fun vid. I think it was more the former which was pretty cool. Again not the color I had gone for but still cool. Then it faded pretty fast and I tried again last night  after going properly blonde aka Danerys (which looked shit – I definitely am not one who suits blonde).

Then I thought I did everything right and was waiting in anticipation of hair the shade of a Chinese red dragon. I instead got this

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(yes, that’s my tenth cup of tea in the background)

It’s not really red is it! Damn you Directions Poppy Red – I should have stuck with Manic Panic.

But if I wanted a departure from my old life then I couldn’t do it with more of a statement than having bright pink hair. The downside is that people do stare at you whether you are  blonde or pink which I find hard.

Hair is a statement. We show so much of who we are by what we do with it, from religion to wannabe Chinese red dragon. I wanted to start living my life by my definition. Not sitting around with labels over my head like ‘bipolar’ ‘mental health’ ‘PSTD’ etc or be what my parents thought I should be. I want to find out who I am.

I have a very difficult time talking about my parents. It’s such a super complex relationship and is about 100 posts worth. But let’s just say my mother is an awkward person and my father hardly around. Mum did what she could but there is a lot I don’t think I will ever forgive. Even now I am still trying to release myself from the restrictions imprinted on me as a child. My hair is proof. And I find it difficult.

Anyway – I don’t slot neatly into someone’s box and I want my hair to be a visual demonstration of that. But only to me. It’s for me. Not anyone else. So here’s to pink candy floss hair :) perhaps I will find my Chinese dragon next time.

By the way, my daughter, the ultimate arbiter of these things, hated blonde. She nearly cried when she saw me with it. This morning the first thing she did was giggle and try and grab at the pink fluffyness of my hair as it was. Who am I to argue with her preferences?! :D

Sleep, just a little, would be amazing…….

I was proud of myself today – I drove to see DH and his dad in a different town to visit the market where they were working.

I feel sensitive to everything sometimes. I feel crowded in and panicked and stressed. Even the tv show on is making me feel so edgy. It isn’t something I want to watch either but normally I find a way to tune it out. It’s hard living with the in-laws and no end in sight to when we can move back home, but I cope with it sometimes better than others.

The worst is when this affects what I do with my baby. I find it hard to leave the house so going out with her is stressful, but I do do it. People buzzing round me in the shops and on the tram is hard work but I do it. But I have noticed there are certain things that happen which I find freak me out/stress me out beyond reason:

– the whole weaning thing

– getting her down to sleep

How do I parent effectively without letting these wretched illnesses take over and hit me on two key areas of my daughter’s development?

Sleep
I’m going to focus on the sleep for now. Weaning, and the uber anxiety I have around that is a whole different story. It is, of course, part of the whole picture but for now sleep has been the most pressing. I’m finding ways of living with the whole weaning thing.

We haven’t had much sleep in this house recently. The poor lamb had a temperature and prior to that a stomach bug. I was feeling pleased with the sleep routine we had established and she was getting pretty good at sleeping through the night. I am trying to be relaxed and laid back about most things but sleep I feel quite regimental about. It’s so important for people without a mental health problem to get enough rest, but then add the bipolar, BPD and now PTSD into the mix and bam, I need to make sure I get enough sleep or I could end up horribly sick again.

So when she’s wailing away in her cot and standing up and refusing to lie down and just rest at 3am I feel beyond frazzeled. More often than not DH has done the night shift so I don’t have to worry. But now I find that I am getting obsessed by the fact she’s gone back to sleep in our bed four nights in a row, she won’t go down now until gone 9pm and is wide awake again 4 hours later and I just don’t have a clue how to make it stop.

It’s awful to say but I find myself focused so much on the ‘how do I make it stop’ at 3am rather than ‘how do I project calm and reassurance’ and ‘what can I do for my baby to make her comfortable’. The latter two of course solve the whole sleep issue for everyone. I do end up doing the former, and then end up having to leave the room after none too gently poking DH awake to get him to take over. Then I feel guilty because there’s a howling baby that I helped put in that state and an exhausted husband who has to get up and go to work in a few hours whilst I slope off and make myself a mug of warm milk and have some quiet time to calm me down.

I have been told, and read, that babies who had traumatic births and long labours tend to be the ones struggling with sleep issues/separation anxiety. Of course my baby girl had to go through both with a stay in NICU so I do believe there is some validity in that argument. Some babies also aren’t great sleepers either. Basically, teething is also a bitch.

What I find is that these things, which the vast majority of parents go through, are then magnified and multiplied in my head into 1000x worse than they probably are. I can easily see how, if pushed too much, it is at risk of becoming a child protection issue. With the latter I am fortunate in that I receive plenty of support and talking therapy to help me, and DH is as ever such a star, but I find the paranoia blooming in that area as well – basically I am terrified to do anything that may be perceived as hurting or harming my child. So that colours my parenting too. My talking therapy is actually around me reducing the distance I have put between myself and my daughter and to reduce the anxiety I have that I will hurt her somehow. Apparently common among people who were abused as kids, but it manifests itself in so many different ways as a parent.  Here it is because I am trying to over-control something which really can only be controlled to a certain extent. I am rather obsessed with it all.

The result is becoming quite toxic. I am sure the majority of parents living with a mental health problem don’t have to camp out at their in laws, facing an uncertain future financially and wondering where they will end up and how they will raise their child amid such randomness. I do hope my circumstances are not the same – I wouldn’t wish it on anyone and it definitely exacerbates what I am living with. My in laws are very nice, well meaning people and I will be ever grateful for them giving us a roof over our heads – but lordy I have nothing in common with them whatsoever! And holy hell when they clunk around and disturb the baby when she is asleep I am not responsible for my feelings at that present moment in time. But we can’t move. We are stuck as our apartment is not a suitable environment for a baby right now.

At 3am I am petrified that the boundaries will drop. I end up feeling like a failure that I have to step away so often. It’s why I feel I am regressing in my head, the creeping sensation that something is trying to crawl under my skin and into my brain. Why I had to go and find a quiet spot to sit and write these thoughts out, just to bring some sense of calm and order back to me, similar in a way that my autistic cousin has to go and find some peace. There is so much chaos that I struggle to even bring order to something as simple as laundry, something as straightforward as giving my daughter a bottle, or even putting her into bed. I can’t manage it sometimes. My reaction is way above what it should be.

I have renewed respect for single parents every day who are going through this alone with no one to turn to. DH always picks up the slack, so our daughter is never left wanting and I get some quiet moments to myself. My advice would be always to talk about it. Don’t be afraid that you will be judged. I know I feel like I am the only parent in my version of hell but I know I am not. Talking helps, whether it is with your GP if you have no one else to turn to, your health visitor, your parents, your friends. Never feel like parenting is some kind of competition and look for the signs that you may be spending more time worrying over something than is normal. It’s difficult to know what is normal, I know, but there are triggers. Your partner should always be the first port of call, but some are non existent or may as well be non existent for all the use they are. I am blessed in that regard. So for me, it’s off to the doctor again next week to explore this further and letting DH follow his parenting instincts taking care of the baby at night and me letting him just get on with it.

The responsibility of being a parent, and a mother, is huge and I really don’t want to ruin it because I can’t cope. She is the most amazing thing that has happened to me and she deserves the best <3

And please wish me luck in reclaiming some sleepy time :D

When Bipolar and Phone Apps Don’t Mix…..

Call me old-fashioned but I don’t think that never ending battle against stigma in mental health is helped when you have game developers making fun of things such  as the rather horrendous ‘Bipolar Chick’ by ISS Game Studio.

Apparently you can help the mad bipolar chick go as far as possible in her wild ride with a taste of pure destructive power. Oh gee wizz, what fun that sounds [insert confused face]

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There it is. I’m not making it up. It’s wrong on so many levels. I feel like spamming their email account to ask them to explain exactly what they thought they were trying to achieve by trivialising – and being factually incorrect – over something that has had such a corrosive impact on so many families.

Perhaps some people with the condition see the humour. I certainly don’t. But it’s a great example of how it’s seemingly ok to take an illness which already has a lack of understanding and make it even worse. My life is not a game to be taken the piss out of. How many more of these things that breed ignorance will we have to live with?

Fighting stigma seems like an uphill struggle :(

Stigma continued

I have been thinking about this subject a lot recently and never did it hit home more until today.

I rushed down to the shops first thing to get some nappies – we were literally down to our last one – and headed to the store that had the best deal, DH in tow as he was on his way to work. It was quiet still, as it had just turned 9am and I was expecting a quick in and out of the shop.

As I went in, I heard a high pitched groaning noise coming from a man somewhere in the shop. I didn’t think anything of it, until it started getting more and more insistent. My paranoia radar was on full alert by this point but I couldn’t leave – I needed nappies and we couldn’t afford to to anywhere else.

By the time I reached the till it was quite apparent the man was in some distress, with a high pitched keening akin to sounds I have heared from my  severely autistic cousin when he is not in a safe place. The man was collapsed in one of the aisles and staff were gathering round him, and the shutters were coming down as they cleared the shop from the general public. I was also feeling quite sad, thinking that could easily be me in that man’s shoes in an episode (DH has had to come and retrieve me from supermarkets and other crowded places on more than one occasion).

There was me and a woman in the queue, and as I hastily paid for my items another keening noise broke out, followed by a very loud tutting noise from behind me! I turned to see this lady with a look of disapproval on her face to the man who was clearly having some sort of horrible episode on the floor.

Well, my jaw could have dropped and I was desperate to give her a piece of my mind, except my Dutch does not stretch to withering put downs that I struggle to find in English at the best of times.

I paid and exited the shop quickly, as two policemen ran in and the shutters went down to resolve whatever problems the poor man had to deal with.

Several things immediately sprang to my mind and have stayed with me since:

– where did compassion go? The man clearly had some form of mental illness yet because he was inconveniencing this woman due to having a meltdown it was impossible for her to go and purchase her cough medicine and sweets elsewhere from a shop less than a minute away (I know, I saw what she had in her basket)??

When did we get so hard as a society that someone so obviously in mental anguish was relegated to being less important than own brand cough medicine and some boiled sweets?

– Dutch police have a reputation for being quick with violence to resolve issues. I also know there have been many cases in the UK of police rough handling people with mental health issues and assuming guilt before checking to see what the real problem is. I know that training on mental health issues is available but I am not sure still how widespread that has been delivered.

I found myself hoping that the police would be gentle with that man and I hope he received proper care and attention.

– that could have been me. I hold it together somehow – well really I freeze and pretend to stare at the shelves before shuffling a bit to the next one, agonisingly waiting for DH to come and get me. I go in on myself. Instead of feeling my flight mode kick in I tried my best to emphasise with the man instead. I really felt his pain, wherever it was coming from. In a way, he is braver than me – he let it out while I hide it away. (Granted, he probably had no choice in the matter but I still think he was brave for even going out in the first place.)

I have been thinking about that man all day. I really hope he got the care he needs. If that woman developed Alzheimers or Parkinson’s or something else equally horrendous (she was older), she had better hope she isn’t judged as harshly as she was judging that poor fellow today.

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.

Verbosity

I’ve been asked to do a presentation to some schoolkids on working in fundraising and my experiences. One half of me got so excited and then the fear and anxiety took over. Will I get the verbal diarrhea I’ve become used to, talking to a group of twenty teenagers, or will I manage to somehow muddle through? How much do I push myself and when do I leave well alone? These are still questions that I am finding answers to in my journey living with bipolar.

Here’s the thing – there’s so much I want to write about and talk about, and so many thoughts that crowd my head I find it hard to articulate. I have started three different blog posts and finished none in the last few days.

I never used to have this problem. I used to be so articulate my mother would get frustrated as I could zone in on a hole in an argument and dissect it with ruthless teen precision. I was on debating groups at school and won prizes for elocution – I passed all my RADA exams. At work I would get my point across using as few words as possible and often was doing public speaking engagements to promote the charity or discuss fundraising with professionals. Written or spoken, I knew that effective communication was one of my strong points and a point of pride for me in a world full of pain, confusion and turmoil.

Then, after my last unmedicated episode five years ago that all changed. I remember sitting in meetings, horrified at what was coming out of my mouth but unable to stop it from happening. What I wanted to say and how it ended up sounding were two very separate things. Sometimes it was to the point of being incoherent and I had to really really stop and think about what I wanted to say. I have had this problem before in previous manias but never so pronounced.

What I have noticed is that, unlike previously, the word confusion hasn’t gone away. It’s not as bad as when I was in my full blown mania but I no longer have the word power that I used to. I will say something and DH will look at me funny and ask me to repeat it. Or I start saying something and stop mid-sentence. The latter is sometimes because I’m processing something in my brain and  I return to it later if it is a tricky topic, but in general the amount of half-finished conversations I have these days is waaaaay higher than ever.

Yep, I have become verbose. Verbosity – one of the things I dreaded the most. So in reaction to this, I end up saying nothing at all for fear of opening my mouth and a ton of crap coming out. In my worst moments, I end up not speaking for days and DH and I communicate via text. Well he talks to me and I type back until I am ready to talk again.

I notice now that even more than before, so many thoughts crowd my head. It’s not so hectic now I don’t work but I sometimes have so much I want to say and yet can’t find the words at all. Stressful situations add to it. It gets frustrating and I end up hating myself, having lost a part of me that I used to rely so heavily on for self-esteem and pride. I used to think it was stroke survivors or people with other physical conditions that had to battle daily with this. Sometimes I look back and marvel at my naivety and, I guess, ignorance!

Writing is a form of release. The pressure of talking is taken off me. I type very fast (thanks to my early years as a legal secretary) and so lots of these thoughts can then translate onto paper. DH can tell what kind of phase I am in simply by what I write and, perhaps more importantly, how I write. Some of it will be garbage and some of it is real thought and emotion. So we sift through it together and make sense of it all later. He sometimes reads my unfinished posts and helps me tune them to something relatively sensible, or something to keep just for the two of us to revisit later.

It’s hard with a baby to find the time to type, but when I do have the time I always feel a bit better afterwards. Sometimes I will explore issues on my posts that I simply cannot articulate to DH so it is easier to write and then get him to read. It helps him understand what is going on in the chaos of my mind too and as a tool it’s hugely therapeutic.

So I’m very grateful for this blog and for forums – you can just write about a feeling, or a state of mind, and revisit it again later. You don’t have to go through the agony of speech.

If I could just write what I want to write to those students that would be wonderful. I know realistically that’s pointless so now I have to weigh up with my doctors whether it is worth going to do it or not. How much of a step am I prepared to take. I am warring with the old me and the new me and trying to find a path in the middle. Some days it isn’t easy. But perhaps I can regain a bit of myself by sharing positive elements of my past experiences? And I find it so interesting talking to young people, they have a fresh and vivid view on the world that helps tint mine in a happier shade.

So who knows? Perhaps I am not as hopeless as I think I am. It’s just finding the most effective way to make peace with myself and that is definitely still a work in progress.