• Tom Robinson

Mental ‘health’ isn’t the problem! Mental illness IS! A dose of reality for anyone that's wondering!

I’ve been wanting to write something over the last few days, but because I’m trying to be the ‘expert of myself’ and put my own mental health first (quetiapine withdrawal and general burnout) I have, so far, resisted the temptation to thrash out another post!


However, more important, and ‘newsworthy’ happenings have occurred over the last few days, and I want to document it while it’s fresh in my mind – firstly, so that I don’t forget but also because I find journaling such a therapeutic and effective way of venting my frustration and thinly veiled anger!


Before I start this morning’s post though, I’m going to issue a warning that it may not be up to my usual standard, because I’m still experiencing problems with brain disfunction having withdrawn from the antipsychotic ‘quetiapine’ over two weeks ago now….


How am I’m still suffering the consequences? Read on to find out! 🙈







Residual problems are a slight worry…


I’m going to write a detailed post on all of this in the future – probably at the end of the week when, (hopefully) I’ll be feeling like a fully functioning human being again that hasn’t had their brain deactivated by a disabling psychiatric drug!


But before I write that final ‘goodbye, good riddance, quetiapine’ post, I’ll just quickly mention a couple of things that are currently going on...









Renewed ability to sleep! At long friggin’ last!


Fortunately, things have now settled down on the sleep front (this has taken over seven months to achieve) which is amazing because there was a point when I thought that I would never be able to sleep without quetiapine ever again.


It’s been so hard to withdraw from because it’s disrupted my sleep patterns in such a MAJOR WAY!

But, having persisted with this very slow taper and battled through the abiding nights of crippling insomnia, to my astonishment, I’m now not only sleeping but almost more excitingly (wrong word I know), I’m also getting that tired and ‘drowsy’ feeling naturally when I go to bed.


This is such a novel experience for me because for four years there has been absolutely no chance of my brain morphing into sleep until I’ve taken the drug in question and been intoxicated by its powerful and sedating effects!


So, thank God for the renewed sleep first of all… but then there’s been a couple of more subtle differences that I’ve noticed too which I will mention now and then go into more detail over, in a future post.









Dreams, emotions, and liberation but still ‘wrung out’ at the same time!


The subtle differences that I’ve noticed over the last few days have included (amongst others):



  • Being able to dream again


  • Being able to experience and process emotion


  • Feeling a sense of liberation and freedom



These are obviously all very positive elements of brain recovery - but then at the same time as all of this relearning and rediscovery, I have also been experiencing headaches and ongoing waves of just feeling generally ‘wrung out’ and exhausted.


God help the millions of people out there who are either trying to withdraw from these things, or suffering the terrible side effects while on them!


There’s also going to be a tonne of people like me, who get Dr Zamar’s treatment (should it ever reach the NHS of course) and realise that all of the drugs they’d been given previously were a waste of time and now they have the nightmare problem of getting off them!


The more I read and write the more I realise that there’s a very SERIOUS and WORRYING problem out there and it’s all related to the pernicious effects of these horrible drugs!

Anyway, before I can help anyone else, I need to help myself, and I’ve realised that I definitely need more time out this week to fully stabilise and give my brain time to adapt and recover in the aftermath of this drug!


This (hopefully last element of recovery) is far more difficult than even I appreciated and is something that most definitely needs addressing, because so many patients are now stuck on psychiatric drugs that are almost impossible to withdraw from!


We are now a nation of drug dependents and addicts which is only adding to the already significant and concerning problems of deaths, irreversible damage, and other general struggles, sufferings, and problems!

We need to sort this out ASAP!


Detailed post to come on all of this, so watch this space!









Mental health isn’t the problem – mental illness is!


While everyone else has been enjoying their bank holiday and doing whatever it is that they do to relax and unwind, I have not only been struggling with the aftereffects of quetiapine but also spending time visiting my friends who are incarcerated in hospital!


This has not only brought back quite a lot of unwanted and supressed memories but also made me annoyed at the fact that people are talking about mental ‘health’ so much in the media, when the real problems don’t lie in mental ‘health’ at all – the problem is with MENTAL ILLNESS!


This is what people would realise if they bothered to visit the psychiatric wards and actually got involved with the ‘nitty gritty’ of mental illness as opposed to the unstigmatised and ‘safe’ alternative of ‘mental health’. God, it annoys me so much!


This has all been on my mind recently because several insensitive remarks have been slung in my direction and I’m constantly hearing people either in the media or otherwise saying throw away comments such as:



‘I do XYZ for my mental health’ (implying that I’m not doing the right things for my own mental health and that’s why I have problems).


Or



‘You of all people should have some respect for my mental health’ (when in fact they’re being narcissistic, wilfully ignorant, and venomous).

Or


‘Have you tried this app, or this product or maybe you’re just over thinking this sleep thing, I do this, or I do that…’ (people who have no appreciation of the fact that others may experience the world in a different way than they do).


These people are completely missing the point – what they’re all talking about is part of the normal experience of being human!


For example:


  • I’m a bit sad or stressed about something so I go for a run and feel better about things = normal human experience


  • I’m worried and have anxiety about an upcoming exam because I’m not well prepared = normal human experience


  • I have a lot on my mind at the moment and my sleep is suffering a bit = normal human experience



What’s not a normal experience is when it starts to have a significant impact on your ability to function – i.e:


  • You’re having to beat the devil off your back to get out of bed in the morning and you start wanting to kill yourself (depression)


Or


  • You’re crippled with anxiety and having panic attacks about leaving the house (not attributed to a distressing event) or you are having a manic, or psychotic episode


Or


  • You’re suffering horrendous withdrawal problems from the drugs, and/or crippling insomnia as a symptom of mental illness



These are examples of significant problems that impact your daily functioning – everything else is just part of a normal human experience!

When are people going to realise this?!









Shout out to my mental illness troop


At the end of last week, I went to visit a friend who has had to have an operation relating to a mental illness complication, and then on Saturday I went to visit another friend who is currently incarcerated on Ashurst Ward at the Littlemore ‘intensive care’ unit in Oxford.


(Notice I put intensive care in inverted commas – I’ve been on that ward and there was nothing resembling ‘care’ whatsoever - unless of course you count locking people in their rooms, pummelling them to the floor, and forcibly injecting them with antipsychotics of course).


It was so hard for both myself and my friend who came with me (who has also been subjected to the horrors of Ashurst) to revisit the scene of so much trauma, but we were so determined to go and support our friend that we ‘manned up’ and just went anyway.


Now, I just have to share the horrendousness for those who have no experience of the system, so that they can know just how bad the state of mental healthcare is in this country – God forbid that you, or any of your loved ones have to go through this kind of mayhem but here’s the reality…


On Saturday morning I rang to make the appointment to visit, and no one answered the phone… Intensive care?!! This was as predicted of course, because before I completely gave up with NHS mental health support (when I was assigned to a psychiatric team on the NHS) no one answered the phone then either… BUT that’s just appalling quite frankly, and simply NOT GOOD ENOUGH FOR VULNERABLE AND OFTEN SUICIDAL PATIENTS or THEIR FAMILIES!


So, I rang twice and no answer, then finally got someone at about midday who took our names and gave us a time to visit for half an hour – that’s all that you’re allowed which does seem a bit harsh but anyway whatever.


So, we turned up at our allotted time later in the day and then couldn’t raise anyone through the intercom system outside the disgusting, neglected and revolting bungalow which is what they call mental health ‘intensive care’ - with weeds sprawling out of control everywhere and a flower box outside the door, completely neglected with a pair of broken glasses in – a poignant representation because they probably belong to some poor patient who either died on the ward or who escaped and never got his glasses back - see photo:








We were then told that we'd have to wait outside while they worked out how they were going to 'facilitate' our visit because 'regrettably we're very short staffed today' Of course they were! Anyway, while we were waiting outside (no waiting room for worried and terrified relatives of course), my friend said to me:


“This is where they hosed me down, naked, and left me waiting for half an hour with the police, wetting myself while waiting for a room”.

Before he told me this, I thought my experience was traumatic enough….it’s so upsetting because I know that if we’d had access to earlier support and intervention then there’s no way we’d have had to endure so much trauma – my God it’s terrible!!


Anyway, we finally got into the building (which is like trying to get into a maximum security prison) and met our friend in the visiting room (which, by the way, is far nicer than the inside of the actual ‘intensive care’ ward which is cramped and sterile with a concrete garden the size of a postage stamp surrounded by an impenetrable and towering fifteen foot metal fence!); so far from ‘holistic healing’ it makes me wonder why on Earth I ever even mention any of these things but hey ho!


BUT, I was in fact, pleased and relieved to find my friend, firstly alive, and secondly, quite so accepting of his situation – these people are so resilient and so strong! – another lesson that can be learnt if anyone ever bothered to actually talk to us/them!


Although drugged to the eyeballs with antipsychotics, he was desperately trying to hold a conversation (he was completely lucid by the way) and even through the haze of brain disabling antipsychotics was quoting Sartre and reciting parts of Wuthering Heights for me after I mentioned that I’d just visited the Bronte parsonage in North Yorkshire!


The minds of these ‘mentally ill’ people are astounding, and this is the point – they’re going through a really profound and ardent spiritual awakening as Dr Russell Razzaque (author of Breaking Down is Waking Up) would appreciate… unfortunately this is not the case with the majority of psychiatrists and nursing staff who just label you as ‘mad’; their eyes literally glazing over with disgust when you make a request for help or ask them a simple question!

My mate will no doubt be seeing a psychiatrist for twenty minutes once a week (as is exactly the extent of the support on the NHS) and the rest of the time be being ignored, and when not ignored, dismissed and discredited as insane at every turn and action!



I thought about this as my friend rambled to me in broken French (he does this when he’s ‘normal’ anyway), and how the psychiatrists must interpret the ‘Sortez-moi de là, je t’en prie!’s’ and the ‘Vive la France’s’ as insanity when, in fact, this is just him playing with languages and being jovial, as he always is.


Anyway, he was making absolute perfect sense (to me anyway) and he especially loved the quote by Charlotte Bronte on the card I gave him which read:


‘I’ll borrow of imagination what reality will not give me!’

He told me he’d been writing (he has always said that he has a novel in him), and I suggested he make the most of the time locked up to engage in as much creativity and deep thinking as possible – (probably something that most psychiatrists would discourage but whatever!), he really appreciated the support and understanding and was so grateful for the visit which I knew he would be!


I will always remember when he turned up unannounced to visit me during my last psych ward admission and it made such a massive difference. I was determined to do the same for him this time and I’m so glad I was able to get there for him - I will be going again obviously, because:


Only another patient can understand how important the support from an empathic stance really and truly is!








Say what you want but I know it’s a kind of spiritual awakening!


Some of the things my friend told me were just so incredibly enlightening (and so obviously pertaining to spiritual awakening too), such as when he’d told me how he’d swum across The Thames just before being sectioned because:


“Why not? Tom – I wasn’t afraid of death!”

At another time in his ‘manic episode’, ‘spiritual awakening’ ‘psychosis’ or whatever you wish to call it, he told me that he was eating the leaves from a tree because it symbolised growth and rebirth, and how the sudden access to primal instincts overcame him in the most ‘esoteric of ways’.



– I understood what he was saying so implicitly - God - I love that boy! I’m sorry to say though that most psychiatrists will not see this the way that I do…. (deep sigh).

Anyway, I LOVE hearing these profound experiences and he was also very excited to tell me that he’d been walking in South Park as a reincarnation of Alfred Jules Ayre while having an existential crisis over the meaning of life and God’s existence!


Some of the stuff that us ‘mental’ patients come out with in our ‘awakenings’, ‘psychoses’ or ‘manias’, is truly priceless – if only it could be harnessed by some compassionate, empathic, interested, and accepting professionals then they might actually learn something!


I listened intently and thought to myself afterwards –


‘Dr Razzaque would have loved to hear more of this – we have got to start tapping the genius in this boy and stop labelling him ‘bipolar’, ‘psychotic’, ‘insane’, ‘crazy’ and ‘mad’ because we can learn so much from both me, him and the many others like us!’








Conclusion


People have got to wake up now and realise that the crux of the ‘problem’ is with mental illness and stop skirting around the meaningless issue of mental ‘health’!


We’ve also got to start getting involved in the ‘scary’, stigmatised and massively misunderstood world of mental illness and integrating ‘mad’ people into society with understanding and acceptance:


There is so much to learn from these people if only they’d be given a chance!

I hope that today’s post has given people a little bit of insight into what’s really going on out there – until you enter that world, you’d never have a clue about how substandard and misunderstood it is which is why I devote my life to gratuitous blog posts like this one!


I feel so strongly about this that I have decided that once I’ve raised myself out of the gutter and shown people that it is not only possible to survive these horrific ordeals but also analyse and learn from them, then I’m going to raise my friends out of it all as well!


A big mission but I think I can do it! Come on publisher, I need to get my book(s) out so that I can start crafting this epic novel with my friend – God alone knows what he’s got in mind for the plot and story line, but I cannot wait to find out!


I won’t be writing so much this week as I feel as though I need more time to rest and allow my brain to get accustomed to life without quetiapine – a mammoth task unfortunately!


I also feel that returning to the scene of so much anguish and suffering (Ashurst Ward) has had a knock-on effect on my energy levels so I really need to prioritise self-care again this week and concentrate on R&R (as well as doing all of the pre study for my NLP course which I still have to finish!).


I’ll be back at the end of the week with more stark opinions and divulgences, as well as astounding revelations and educational insights from the world of mental illness!


Thanks for reading,


Speak to you soon,

TR

www.dyingtostayalive.com




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