Come to the Edge, but not Too Far.

Soooooo….how is it going in my world, some might wonder.

Well, I’ve been taking on a lot more since I got out of hospital and it’s kind of been a test to see what is too much to take on and where the line is to draw for me, where I need to stop myself from breaking. I’m sure now that I’ve had that realisation; that point where I can safely say “I’m ok hanging here for now, thanks”.

I recently got myself into a romantic relationship, which I’m very excited and happy about. I feel blessed to find someone I can talk to about anything for long periods of time and share intimate moments. Plus an interesting thing happened between us lately. We were both seeing the numbers 11:11 and other such recurring numbers. She would see 16 in numerous places and I would see things like 12:12 and other combinations of the same numbers. I know some of this is related to Angels and other such things, which is fascinating to read and research about if you haven’t.

As far as Psychiatry goes, I’m looking to meet with someone from my local mental health team to receive an appointment for the Psychiatrist to discuss my medication. I am not “Psychotic” any more so I don’t feel I should have to take anti-psychotics indefinitely, which one Psychiatrist at the mental health team actually said to me before now (a rare good guy among doctors). I’m also meeting with the worker from the mental health team to discuss a move to a new place. I requested a change of housing about two years ago, due to my place being detrimental to my health (being claustrophobic and making me feel trapped) and I have finally come to the top of the list to be given an alternative. I can only hope it will be more suitable and not a waste of precious time.

I’ve been embracing my spirituality as much as possible and I’ve met others and had conversations which I haven’t been able to have with people so much in person before now, which is refreshing. I’ve been using crystals and gem stones to protect and enhance my home and I’ve been making use of a Shaman Oracle Deck, when I’ve needed to ask questions and seek guidance. Plus I’ve been reading books of a spiritual nature too, which have started to have a profound effect already. I also went out of town to a nice shop where there were offers on gem stones and other helpful items, where I met the owner again and another guy who’s a Buddhist practitioner who I met many years ago. At that time I was out on temporary leave from the local Psychiatric hospital when I met him. It was a nice reconnection. Generally I feel more in-tune with the natural order of things, as opposed to the sick society and it’s people that I see around me. I have faith that this is a year for change where people will start to wake up more and realise enough is enough – we need to start doing a better job for ourselves and Mother Earth.

Only time will tell of course.

T=M

I’m still happy to be alive! – Part 1

OK, so I’ve been somewhat busy of late and I’ve just got back from a Charity event in Liverpool, which was in order to support EleMental and the work that is being done with those people connected to it. Robert Whitaker (author of “Mad In America” and “Anatomy of an Epidemic”) was the guest speaker, and I truly thank him from the bottom of my heart, and to those who made it possible for this event to happen.

What I have to say here will be both shocking and controversial for people to read, but I assure you, what I have to disclose is as close to the truth as possible. This is both a reason why I have gotten so very angry many a time, and why I continue to have a passion for contributing to change within and around mental health services. I am going to list bullet points which highlight what it is I have to say. Here goes:

* I have often told people that I was born to two parents diagnosed with severe mental illness. Through the first ten years of my life, my parents were admitted to Psychiatric Hospitals – at times together for up to 6 months  – and were subjected to various treatments considered to be suitable by the medical system in place. I was separated from them at a very early age, and this started what would be severe trauma for myself, and ongoing severe trauma for my parents.

Well, it turns out that if someone had actually listened to what their problems were and cared to help them with what were simply their “basic needs”, it would have been unlikely that they would have needed to go into hospital at all. I’ll look to point out why this is significant as I go.

* I remember visiting the Psychiatric hospital that my parents would become familiar with, at around the age of six years old. On one occasion I got to see my mother after she had received a “dose” of ECT (Electro-convulsive Therapy). It was very shocking and disturbing for me to see my mother this way, as she appeared to have been, what I can only describe as being “beaten up”. Her speech was slurred, she was wobbling about as she walked and generally had trouble standing up to spend time with me.

ECT works by damaging the brain – it is designed specifically so that this happens. It destroys areas of the brain which affect a person’s memory, and it supposed “helps” when especially traumatic memories from the person are lost – memories which can become a difficulty to live with. Unfortunately, because the brain is damaged, it has obvious cognitive side-effects for the individual and also prevents efficacy with more holistic approaches, such as therapy, where it can be essential to remember these traumas for healing to take place.

My father also received this method of “treatment”, although I had never seen him after it had happened.

* Due to my parents difficulties, it was a great struggle for them to make a living. The stress of unemployment and the responsibility of taking care of themselves – as well as their only child – would often become too much and trigger their “mental illness”. One thing I started to develop early on as a child, which I was not given the diagnosis of, would be what is considered ADD (Attention Deficit Disorder). This is something I have trouble with – even today – and have never been given help to cope with the troubles it presents. As a result of this, I struggled through most of my school years, underachieving in the large class sizes which were too much for me to settle down in. I knew I had a problem – I just didn’t know how to verbalise it or know how to be any different. Teachers and tutors would often report that I was “disruptive” or something along the lines of not showing enough attention in class. Hmmm I wonder why?

Of course, if I had been given this unfortunate diagnosis, I would have been put on Ritalin almost straight away (and I almost did get put on it – but fortunately my mother saw sense). We now know today, that long term use of Ritalin (which is prescribed to children fairly often in some places) has a significant potential to develop “Bi-polar Disorder” and other major problems, in those who use the drug.

I’ll take the struggling I had with school over the drugs that create mental dysfunction.

* On the topic of drugs, both my parents have been given a large percentage of the drugs that have become available through the Psychiatric industry, produced by the pharmaceutical companies. This usage of bio-chemical drugs would span over 30 years. This was also in a time where – at least in this area of the world – there was a lot of experimentation and no clear idea from professionals in mental health services on how these drugs worked. Yet they were using them regularly.

My father was at one point given an overdose of the mood-stabilizer commonly used by those who were “manic depressive”, by the name of Lithium. It has been shown that high levels of this particular combination of chemical salts, becomes poisonous in the blood stream and could eventually result in death due to it’s toxic nature. My father experienced an OBE (Out of body experience) at this time and if left any longer, would have likely been killed by it.

Also another range of common drugs used as a choice for people like my father, and also my mother (diagnosed with Paranoid Schizophrenia) are that of the neuroleptics (anti-psychotics). These particular drugs work by disabling specific areas of the brain, associated with the functioning of neuro-transmitters, and prevent the brain from operating the way it is suppose to naturally. These medications have recently been shown to “shut down” such things as the Basal Ganglia (or more recently referred to as the Corpus Striatum) which is significant because there have been indications that dysfunction of this particular set of nuclei, or atrophy, has been linked to certain diagnoses, such as OCD (Obsessive Compulsive Disorder).

Also, long term neuroleptic use, has also been associated with a drug-created disorder called “Tardive Dyskinesia“. Signs of this disorder can be seen in a person, through involuntary movements of the body, such as muscles spasms; twitches; difficulties controlling the tongues movements; and general difficulties with other areas of the body.

My mother has these problems. It becomes difficult for her to do something as simple as holding a cup of tea, so she can enjoy a hot beverage. It also presents problems with sleep, as there is little respite from this disease, so this adds to the ongoing discomfort. Pain throughout the body often tends to be fairly chronic. At this time, it is unclear if this is always permanent damage, but it is considered that it is likely. However due to the plasticity of the brain – and how amazing an organ it is – there is the potential for repair to be made over a period of time. One can only hope.

Another common problem with the neuroleptics, is that it works much like a “chemical lobotomy“. It tends to disable the frontal lobes of the brain, which are associated with what tends to make us different from animals, allowing us to be human in this respect. What comes with this is a profound sense of apathy. People simply stop caring about what they are doing, even if they had previously enjoyed something that they were gifted and talented at. There may be a tranquillity, however it is at the expense of what contributes to making us the passionate human beings that were are. I’ll refer back to this section again.

* For a majority of my life, I have had to deal with what is considered to be chronic depression. I have also had difficulties with anxiety, especially in social situations (related to trauma around bullying when younger) and a number of bizarre or eccentric behaviours due to my difficulties coping with the outside world.

At one point, I was at a loss as how to cope with this overwhelm, and although naive and ignorant about the medications that were available to help someone like myself, I decided to give the anti-depressant medications a try. All I really wanted was someone to talk to, who could understand.

I tried my first drug, Cipramil (citalopram) and developed unexpected difficulties. I experience what would be considered to be a panic attack, and for a time was scared that I may actually die, due to my heart failing. It’s safe to say I left this drug alone after that.

Then, I was given a drug called Dothiepin (or Dosulepin) which I remained on for roughly six weeks. This was a drug that tended to cause a lot of drowsiness in those using it, especially at high doses. It turns out that I was prescribed a dose of 450mg (the maximum recommended to be 250mg safe usage) by a then junior doctor. After experiencing no recognisable side-effects, or feeling any difference for better or worse, I consulted a different General Practitioner for advice on what to do. I was told that if it was not working for me, then I could come off the drug – and that’s all there was to it. Little did I know, that going “cold turkey” on medications of this nature – especially at high doses – were potentially dangerous. This would trigger my first (but not last) episode of what is considered to be “psychosis“, where I experienced much of a three or four week period blacking out, along with auditory and visual hallucinations. I also experienced a number of delusions.

I hope that this is starting to paint a picture of something fundamentally wrong with what had happened to us as a family, and why I feel so strongly about disclosing this information. We are not alone in this: many families across the world are put in danger through ill treatment deriving from careless use of Psychiatric treatment.

I will look to do my best to finish this story or account in the next part, which I’ll look to complete soon.

How can ‘lived experience’ be useful?

In more recent years within the UK, there has been a greater emphasis towards the ‘lived experience’ of people suffering with mental health problems. People working in the field have been asking how these people have found mental health services to be and what it is they have to offer in order to work towards improving the help available for those people that require it.

As someone who falls into that category, it’s a question I’ve pondered on from time to time. I’ve offered some of my time to different courses, workshops and volunteer opportunities with this question in mind, but I’ve found it a challenge to make effective use of the lived experience I have to offer. Having found that to be disheartening, I’m more curious to know the answer to the question asked.

I feel part of it has to do with the general attitude from professionals and employees within mental health services and the field, towards the people who look to use them. With how prominent the Psychiatric system is, and with what is considered to be the facts and truths associated with ‘service users’ and their health, having an opinion or personal evidence that contradicts this otherwise tends to be dismissed and given little consideration. Say, for example, you have lived experience of Psychiatric hospitals and their facilities. There are certain rules and laws that take away your basic human rights, but due to the models and beliefs in place from those in power, having lived experience doesn’t really have any value towards making a difference in this respect.

I feel for lived experience to truly make a difference, more people have to give much less power over to those in mental health services, and work towards taking it back for themselves. Having more people who are considered to be service users working together with each other, whether it be within their communities or within the mental health field, is probably what needs to happen for lived experience to be of any true worth or value. I feel it’s crucial that those who are directly involved in creating mental health services, have a great understanding of what it’s like to live with these problems. In saying this, the only way of truly understanding what it’s like to suffer with these problems is to have had first hand experience of it to begin with, as opposed to coming from a purely academic background on the matter.

Perhaps a greater challenge for those with lived experience, is that of having enough of  a reason to care about making a difference. With what these people have to face on a daily basis, it can be of great difficulty to sustain an interest and to feel it’s worth their while to make the considerable effort required to contribute to the cause. Being able to give the people the courage, inspiration and motivation to better themselves, or to make the time for the cause, may end up being the one important key that opens the door to the greater possibility.

 

 

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