Author: nessiekaybee

Car bubble

That car journey was something else, you know you have no sense of direction so take a really long route but you know the way up until the very last bit, the kid has to navigate using the mobile. It is a legacy from all the ebay road trips you have done together and it is apparently is good to feel like there is some control over the most uncontrolled situations.

You are in the car bubble, you three, you have lived this breathed it together for three years and you are safe in the car bubble. Actually, it is chucking it down outside and there are leaves on the road so actually this is the not safest place to be at all but it feels it. No one self-harms in the car two feet away from everyone else.

It is a journey you do not want to end, it is like you can suspend time, somewhere familiar, somewhere that feels safe.

The car bubble is a place where you can’t be got at you are in transit, no one knows exactly where you are, it is a peculiar place of safety. You feel like it might never end and you can all stay here in transit never getting there but being safe.

You don’t want to give your kid over to these people however well-meaning and well qualified they only know them through the referral paper work. They don’t know them like you do, they don’t understand how much time and care your kid needs.

They don’t know that your kid has not slept alone for years, that they have needed to be nursed to go to sleep because of their nightmares, that you have spent night after night telling them that they are safe, that nothing is going to get to them, you have slept holding their hand for longer than you can remember, in fact you can now no longer remember a time when it wasn’t like that. Your world is so tiny and they are totally at the centre of it.

You do weird things like signing along to show tunes and Eminem, who really worries about parental advisory stickers when things are this fucked?

All the while you are thinking about the epic fail that you are as a parent, your primary function is to keep your kid safe, to keep them well, this is even before you think of things like making them happy.

Keeping them alive is a pretty basic parenting task and you know you have fucked up royally when you can’t even do that. The guilt of failure is painful and while your psyche is being put through the grater of guilt, outwardly you are positive about it all because you may not have been able to prevent this but it will be the smoothest and least unpleasant hospital admission of all time…..always good to have a goal!!

It is now getting late, people are hungry you know you must be close because due to the mad route you have chosen you have been driving for four hours and off the roundabout you see the Golden Arches, bless you Ronald MacDonald one of the few food outlets where you do not actually need to interact with the real world. Drive through is a godsend when you feel so stretched and shredded that the idea of actually not being able to get the correct McFlurry might cause a total meltdown but at least if it does you are in the car bubble and no one will see it.

The façade is exhausting, you are like a meerkat on speed, looking out for every twitch and indication that you kid might do a runner, combined with holding your own feeling of what would happen if we just don’t go, maybe we can just drive until we run out of petrol. No one would know, they might not find you, we can stay, safe, in the car bubble

You are aware that this is not the best idea and that you might end up on the news. Also the basic practicalities of living off grid in the woods is not actually built around your skill set, this would take more preparation than there is time for.

When you get there you now morph into irritated parent, when your kid needs to be searched, completely forgetting that your kid has turned into a devious hoarder of all things sharp and despite checking the bags several times there was always a moment when it was left alone and you watch with a sense of embarrassment as various pencil sharpeners are removed, a small stash of paracetamol. And you thought your kid wasn’t going to take their weapons of choice with them? A school girl error!

The room is nicer than you expect, all smooth surfaces, no edges to hang yourself on or attach a noose, it is reassuring. You have now morphed into Ethel Merman singing ‘there’s no business like show business’ you are now crackling with positivity, you almost have a top hat and tails on, with a cane. There are sequins.

This is all going be fantastic, this is the best thing ever, it is an opportunity….a quick look at your kid’s face reassures you that she is not totally mad and can see through your deception and frankly if you say the work opportunity again she is going to deck you.

The deal you made is you wouldn’t cry and you two would be brave, you do it, you may be a total fuck up parent in the grand scale but at least you can do this task adequately.

Leaving is desperate; the urge to say, ‘actually thank you so much for the offer but we can manage’ is almost over whelming. It is the kid’s need to get to a better place and their constant drive to find answers and a way forward pushes you through, you remember that they have never refused an appointment, that unless the side effects were too grim they have always taken their medication, they need this, they really need it.

Back in the car bubble, too stunned to speak, you two end up making small talk about the curtains, they were nice. You won’t even remember the drive home, you needed to rely on the road signs as your navigator is not there. The route was better. You are told it will be at least few weeks for the admission; it will be almost nine months before you complete the return journey for the last time.

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On holiday, hallucinations are happy…….

My mother always told me when I was feeling like a crap mother, a feeling that  I think is a pretty universal one. I had this feeling even in the halcyon days when life was going OK. (Obviously a lesson in noticing and recognising when things are going good that I was too dim to understand at the time.) that motherhood does not give you an angel’s wings at the point of delivery.

This is very true and having a kid with mental health problems challenges parenting ability. It is parenting on steroids. It is parenting without the benefit of shared universal experience.

Everyone has their funny stories of their children and the great potty training disaster. Of embarrassing stories of them asking the loudly in the supermarket queue why that lady has a moustache, you standing there making a swift sidewards glance hoping that it will actually be a man with long hair rocking a beard and a Jesus complex, never is. Not so many are forth coming about the experiences of being with the kid who is mentally ill.

It is a weird experience because despite the difficulties, life is pretty normal in many ways and there are many funny experiences, experiences that we in our house call ‘fun with your hallucinations’.

My kid has many self derogatory and denigrating voices and the running commentary, I think this is fairly typical but sometimes the voices and hallucinations can be a little more light hearted. Their hallucinations were mostly hideously frightening but sometimes, just sometimes they could be funny, laugh out loud funny and influenced by things going on in the world, on TV, movie posters, adverts.

It is hard to convince someone that the voices and other symptoms are products of their imagination, that they are not other and only have the same knowledge that they have. When the voices are all consuming they must seem as if they are coming from somewhere else because even in a person’s most disordered times they must wonder why they would be so unkind to themselves. But then distorted perceptions are a very big feature of being mentally unwell.

For us it has worked by recognising these symptoms and discussing them, it helps as anyone who has a mental health issue seems to be also gifted with an innate ability to hide it. Every day is an Oscar winning performance of acting ‘normal’ of trying to keep it together, to try to have conversations with other people when the voices in your head are screaming at each other and you. When you are seeing weird stuff that is scary and just not there. It is knackering.

Being an inherently lazy person and also having a massive need to know what is going in their head, knowing kind of feels that you can reduce the risks and maybe see that train coming – it does not always work but at least it feels like there is some level of control and anticipation available, we took the route of acknowledging the symptoms and checking in with what the voices were up to. It is a whole world of weird.

We were told that the voices and hallucinations are a stress response so therefore when less stressed the voices were less nasty. Therefore, they are at their happiest when on holiday.

We like the seaside, we go body boarding, I am a great advocate of any exercise that can be done lying down and being of a lardy persuasion we are all able to bob about in the sea in April for hours without a wetsuit, although the invention of a rash vest is a great thing for hiding scars.

There is the checking in as to whether anyone else can see something, ‘no’ we cannot see Jean Claude Van Damme lying on the bonnet of the car, ‘no’ that pink crab sidling across the stones and waving is also not real, ‘yes’, that noise is a car alarm going off in the distance.

There is amusement in the most peculiar situations and although they are laughs that others don’t get and looked slightly po-faced when you try to share an amusing anecdote, such as when they are bored the voices take part in the Weakest Link and Michelle and Barrack Obama eat cheese sandwiches after yoga.

It gets us through the day and sometimes laughing at the absurdity of it all can pull us through the more grim moments.

Psychosis, psychosis, psychosis………

At the moment that I created the blog she had just completed her GCSE exams, having been nursed through the education part by a fabulous group of staff in the learning support area of her school. Her school attendance over years ten and eleven had averaged fifty percent and most of that time had been spent in learning support. However, she had managed to gain eight GSCE at the magic C and above and above, in fact mostly B grades says the proud and at the time uplifted and optimistic mother. We were looking forward to a new and fresh start at college.

College had appeared very equipped to manage young people with issues. We met with some learning mentor back in the spring. The process of having to spill your child’s life and frailties to a complete stranger whilst they assess what support the college can give is always a joy and just one of the petty indignities that you get used to as a parent of child that is unwell.

It is that feeling of being judged, of knowing that people want to know the back story, that feeling that people see a deficit in your parenting. Part of the parenting process under these circumstances is learning not give any (fucks), this bit does get easier, not sure whether it is acceptance or exhaustion.

Anyway back to the interview: the lady arrived with an array of A4 sheets with the requisite tick boxes to ascertain what disorder and what support would be required, there were about five in total, we go through them. Prior to going through them we have the interview, the ‘tell me about yourself and what help you need’ conversation.

My kid discusses her issues, anxiety, depression and the really scary one for others the psychosis. We have learned that it is always worth taking a brief pause to assess the reaction of the person who has just heard the word psychosis…..PSYCHOSIS…it is a very loud word and makes people super uncomfortable.

You can dress it up and say things like severe depression and acute anxiety but they are the fluffier more gentle ways to ease people into the understanding or the knowledge at least that hearing voices is pretty typical for people that have mental health problems of the heavy end variety. It is, as described to us, the critical inner voice gone wild and if you are especially lucky they will generalise into many more nasty symptoms of seeing things that frighten you, badly frighten you, that a person can feel things physically that aren’t there, smell stuff that isn’t there and joy of a thousand joys the command hallucination that tells someone to do stuff to themselves. For most people, it seems, hearing that word it translates in their heads as bat shit crazy nutter, don’t be on your own with them as they will probably stab you.They are wrong.

This woman was very professional, she immediately took the professional position…head slightly tilted to the side, eyes slightly squinty, looking a little constipated but most definitely listening, in fact actively listening…with both ears. Except she hadn’t really or the word PSYCHOSIS was screaming in her head with the subtext of this kid is batshit crazy.

We get to the sheet relating to support for ADHD – do you have trouble organising yourself. Dear lady had not listened to the earlier conversation as my daughter had to point out she has OCD so therefore has no problem organising herself or others and could probably organise the questioner into a coloured coded neurotic state too, if left alone long enough with her.

Despite the less than helpful sheets the college was equipped to a much greater level than school. School, where some staff really did give the impression that they thought she was likely to go Columbine on them and kill her classmates or herself, probably in a main assembly, hosted by the Head teacher and probably one where they had the Mayor in to visit to give out Duke of Edinborough Awards, and for good measure, the local paper in attendance.

I get their anxiety, I get the worry that if something happens that the school would probably take some epic flack in any serious case review and more importantly their reputation amongst the apparently liberal middle class parents of the catchment area would be dented if something happened but it is rage inspiring that people hear PSYCHOSIS and immediately assume that this is an outward thing that it makes someone dangerous to be near that they have the capacity and intention to do something unspeakable.

When in reality it an inward thing, full of self-criticism and self-hatred and self-harm on many levels and a secret thing. It is still the case that a person with mental health issues is much more vulnerable from others than anyone is from them.

You will discover that your own anger towards a world that really does seem to be full of fuckwits is hard to deal with and when you come across someone who is not professionally trained but displays a degree of insight and compassion, they are a rare treasure and should be recognised as such.

The lack of mental health understanding when people are faced with PYCHOSIS (shouty word, remember) is really sad and leaves people more isolated and in a position of denying what is happening to them, it is difficult when teachers tell your kid not to tell their friends as it will scare them and then they will not talk to them.

Although I get this is, on one level, a sensible and pragmatic strategy it does not help the person accept themselves. When the mental health experience that I have witnessed is characterised by fear, self-loathing and a compulsive and impulsive need to hurt themselves, being told what they have is not OK to talk about compounds that feeling that they are not worthy.

It also does not help the next kid with the same issues because they think they are the only one.

It is tough when the kid with cancer gets an announcement in assembly and a cake bake fundraiser and your child, who also has a life threatening illness, that does not even have a tried and tested recovery trajectory, is told not to tell anyone because they will scare people into ignoring them and will make them subjects of derision and hostility.

Stigma is a killer.

The train is coming…….

I live in a world surrounded by positive quotes, my daughter scours the internet looking for quotes that inspire and are recovery based. Having seen the hours she and her peers spent scrap booking I noticed that these quotes are highly sought after and much valued.

Whilst I can see their merit and wish I could hold those thoughts to my heart, I do think that I am a little old to practice my typography skills and turn them into posters. Unfortunately, I am also too old and too cynical to build my hopes and optimism on these things.

My personal view is more there is light at the end of the tunnel but be very careful as it is probably an oncoming train….sometimes this will be a very fast unstoppable train that will flatten you even if you get off the tracks, it will fly past leaving you rocking with the force of its passing as you stand pressed on the platform wall wondering what the hell it was and trying to make sense of the speed and brutality.

Sometimes it will be an ancient, sneaking freight train that will approach really slowly leaving you thinking that you have plenty of time to plan a way out, that someone will help you get out of the way but even slow and sneaky trains are heavy and will squash you and leave you feeling that you have a massive weight on you and will need some serious engineering guile to get it off you and to ever see daylight again.

Trouble is you will never be able to estimate which train it is and there is never enough time to plan or to see how bad it will be when they hit you. This is because you have never been squashed by the train of mental health problems in this way before. You have never been in this type of accident in your life, you may have had people in your life who had depression, anxiety, worked with people and although you know it is serious you don’t know or didn’t realise what it would be like to live with and try to help someone who is so mentally ill that it is life threatening.

You will become used to normalising it and living with it and find it almost surprising when you reach the tipping point when you stop just be sent home from A and E, stitched, glued and dressed, with a ‘when are you next seeing CAMHS? Discuss it with them’ conversation, when it actually reaches the point of this is now an inpatient situation and your child is, without some serious intervention, going to die.

You will have noticed that the self-harming is bad, you have followed advice about sharps in the house, you will be eating many more casseroles that you thought possible as these do not need sharp knives to either prepare or eat.

Your underwear drawer will probably be full of any remaining sharp knives and frankly you probably will not have even seen a Stanley knife in years, impromptu DIY or crafting activities are no longer your thing. In days gone by your might have kept a secret drawer, wherein lay a somewhat neglected vibrator bought spontaneously on a weekend away with your husband. Now none are given if this is found as after all no one to your knowledge has even beaten themselves to death with a rampant rabbit. The excruciating embarrassment of that find would be eclipsed by the relief that the sharps stash had not.

Likewise the pain of epilation is worth the risk of forgetting to take a razor out of the shower. Well you may decide that really after a certain length arm pit and leg hairs don’t actually grow any longer and it is actually a blessing to wear long sleeve tops and trousers no matter what the weather. You daughter wears long sleeve tops summer and winter to hide the cuts and the scars you wear then because you do not have ready access to razoring implements and it is not worth the risk.

In fact you won’t really have the time or head space to worry about such things and will find the number of people that advise you that you need ‘me time’ so annoying that you may well struggle to resist the desire to poke them in the ribs with the carefully collected sharp knives in your possession.

You will also come to appreciate that some people actually are brave and compassionate enough to try and say something helpful and practical as most of the world and the people you thought were sensible are really inadequately prepared to be your friend when it really hits the fan.

You may have travelled with the medications in a box hidden under the passenger seat of the car just in case of a spontaneous overdose attempt, whilst trying to balance your kid’s need for developing independence by learning to manage their medications. Balancing your knowledge that they have to learn how to be independent of you and the smothering motherhood that having a sick child brings out in the most laissez faire parent and your desperate desire to keep them safe.

Trust will be a big issue as your kid is still an adolescent trying to find their independent identity and being allowed to develop their skills but the skills they need to cope and manage are not the normal skills, this takes parenting to a whole new level.

First thoughts……

How hard can this be? I bought, rented, named a domain over a year ago, it was intended to document positive events that happened whilst my daughter recovered from her mental health issues.

I bought it with the intention of looking back over the previous, then two and a half years of mental health issues and the grim realities of having a child that has anxiety, psychotic depression, self-harms and wants to kill themselves but from a happier place.

A place of positivity where things improved, where life moved on, where I could share the experience and possibly provide some optimism to someone else who was experiencing something similar and provide a glimmer that for some people, sometimes it gets back to normality. That that dreams and expectations you had for your child return, to the path that you had hoped and really if you’re honest had subconsciously planned  it would all work out and the experience would be useful, reflective, learning…… but it would be over.

Yeah, that’s what I was thinking when I set the blog up.

It didn’t quite work out like that.

Mental illness does not necessarily follow the you get sick, you have treatment, you recover trajectory. For some people it does and many young people will experience mental health issues and will receive input of varying levels and will recover. Some will not and it will morph from something (in hindsight) almost comforting called anxiety and depression that feels that they will have an outcome to something that feels uncontrollable and deeply frightening and is likely to be lifelong.

Lifelong where there is no cure, no easy solution but an ongoing round of therapies and groups to help manage the conditions. This is my world now.

We are at a point where the diagnosis is, emotionally unstable borderline personality disorder, complex post-traumatic stress disorder with a side order of Bulimia. All these things can kill my kid. The medication that she takes in order to stabilise her mood also has dangerous side effects but if she does not take it she is at greater risk of killing herself.

This is not a great set up and scares me witless in the small dark hours of the night, or when I am driving to work, or loading the washing machine, or in the shower, well pretty much anywhere really. The biggest fear is there is no conclusion and no ending when someone has a condition, particularly one with such a high level of impact on their current life and on their future choices. A condition, where the vagaries of political, health and social policy can have a massive impact on their life chances. This keeps me up at night too, despite my best efforts to suppress it.

Obviously, I am writing from my perspective of a situation that is deeply important to me. It is not the same for everyone and my thoughts and feelings will not necessarily resonate with others but I still wanted to write about what I feel and still have the hope that it might help someone else because it is lonely. I am lonely. I am tired. I am scared. There seems to be precious little understanding of mental health issues for the person living with it in the wider world but absolutely bugger all if you are the parent.

So I have returned to my blog, now with an idea that there will be no happy ending in the conventional sense; of recovery and skipping into the sunset with all the loose ends tied up. But with a degree of reflection over the last now four years of living with a young person with mental health issues of the heavy end sort is massively frightening, confusing and will scare the life out of you in ways you cannot comprehend at the outset but it is doable. There are good times, things that make you laugh out loud and that there are no magic solutions, it is just putting one foot in front of the other and keeping on keeping on.