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.