Living with Complex PTSD

 

Living with Complex PTSD

 

If you have read some of my previous blogs by now you will get a theme or flavour on how I write and how I share my feelings on various points of view, now this one follows on or could follow on from respecting my mental health, but of course, this is up to you or you may be coming to this new as you are interested in what I have to say, this is up to you.

Here goes... I have Complex PTSD because when I survived my school life, I say survived it because it was hell, especially the secondary school part of it because I went to the boarding school of hell because when I entered that place for the first day of my academic life I was physically bullied, not just the name-calling but being physically kicked, punched, spat at, etc. I wanted to run away but I could not because I had Autism which made me freeze to the spot, which I gather now is a type of reaction that the human body takes over which is a defence strategy to overcome stress and anxiety.

It made no difference if I tried to report this action which a person had violated against me because it seemed like everyone was against me whatever route I took and even my horrid tutor was also my science teacher made my life unbearable and even encouraged the bullying, or having meltdowns, they even accused me of being my own worst enemy. Later when I was 12, I had my first sexual encounter and I was abused I am not going into the details because it is revolting, and I had to endure this every term I was there and right up until I was 16 nice especially when you are trying hard to study for your CSE’s and the staff were useless and ignored this behaviour.

To cut a long account short I later found out that this type of behaviour and actions is what is now known as Complex PTSD, now you have some of the backgrounds to why I have it, it helps you find out why I behave in certain ways which unfortunately I cannot control, some psychiatrists and doctors would want to put me on medication, however, I cannot take medication because this has nasty side effects and possibly it reacts with other medication that I take for my other complex conditions. The school of thought now is to take the other approach such as CBT, or other therapies, which could be music therapy and art therapy, which are just as effective as taking medication.

Talking therapies do sometimes tire you out, but at least you can get over them quickly and sleep them off when you have finished your therapy whereas this is not the same as taking drugs.

My experience with psychologists has not been a good one as not all of them are the same, my nightmare journey was with a mental health trust, which employs people who just cannot speak English and who are not qualified to cope with people who have complex trauma or people with my condition, and have no idea what they are dealing with such as suggesting that you go to a secret place and that you have a box for hiding things in, but is this appropriate for someone who has complex PTSD and what I have been through I don’t think so and I had to go through endless drivel for this every time and worksheets of blame which was doing nothing to address the underlying problem and after several months of this I discharged myself.

I then decided to refer myself to CARA which is a charity dedicated to helping people like myself overcome historical and current child sexual abuse, which in my case I am finding more helpful and to the point and by someone who has also been through it. We do not use the concept of the box to hide things in as we want to expose what has gone in there to try and get things out as this does not help us, for example, I hate small and confined rooms as I find it very apprehensive and frightening, my brain will shut down and I will tend to focus on the one important thing to keep myself going and to keep myself safe.

Coping with the apprehension of it all is itself dreadful, let me explain my body will tremble, but most of all my thighs and it is not like a restless leg, it is so bad that my hands can go to the point that people think you have Parkinson’s (I don’t, I have essential tremor) it’s like your fitting, so the only way to control this is to do box breathing or imagine blowing out the candles on a cake, so we hold up our hand and as we blow we put down a finger to represent the candle to cope with the stressful situation that we are about to face or I might use humour as people do in a hospital to cope with the stress and this is where people have got it wrong, people on the outside, think it helps!

Another problem I have is mindfulness or the body wave (the standard process that people use) I can’t do it as it reminds me too much of pain in my body and is painful because it reminds me of being sexually abused and raped, so this is why I will walk away or turn my camera off and the sound off. There is an alternative that I would encourage people to use to be aware of people who have problems both physically and mentally and this is one whereby we focus on nature and we talk about the curvature of leaves, the freshness of the grass that has been cut, take a deep breath and feel the taste of nature, perhaps some back round music or even birdsong,

 

What helps me when I have a stressful moment is now to listen to jazz fusion up-tempo music as it helps my mind calm down not easy when you have been raped and sexually abused. The other problem I have is my subconscious is all over the place when I go to sleep so I might dream about a WhatsApp message or text and believe it is real and literally and they can be distressing, and some have been horrible when they are about your close work colleagues and or friends. When they first started to happen which was about two years ago I would wake up and look at my phone and believe that they were there and I was so relieved that they weren’t but this kept happening for weeks and months before they settled down.

I do suffer from deep sexual dreams that are horrid, to the point that everything around me goes dark around me and closes in like a box about to collapse, I can tell the difference from a gay dream to a dark disgusting rape dream as this is my subconscious playing up, but now if I get the text dream, I have created my way of telling myself it is rubbish. Under a previous regime, I was told to wake myself up and go for a walk and then chuck some water in my face and then go back to sleep, but this is not advised as to why would you break your sleep as it can be more difficult to get back to sleep!

I have recently found out that some the Complex PTSD has elements of Autism, but I already have that as a separate condition, so I get a double whammy, oh dear another brick wall moment I stand /sit here, and do I take it, no I have to develop strategies to try and overcome the issues I have.

I do not take medication as it causes problems so I instead look to other ways of dealing with it, I write and blog posts, I also paint and have taken to working with wax (encaustic art) I am a very visual person and a creative as this helps me deal with some of the problems however I still need a lot of support trying to cope with this mental illness and live an everyday existence.

There are people out there who have been helpful to me and they know who they are and some of them I have spent a lot of time talking to, they know I need a lot more help in social care, but I currently live in North East Essex and social care is becoming a joke, not to laugh at, but to show how bad it is a system whereby I am trapped, yes I am hoping to move to Greater London to get out this trap, and hopefully get more help.

If you want me to talk about mental health/ illness and how it affects me be this at a coproduction meeting as this is the way I work best and through Personalisation or around a table, get in touch with me at, remember the Tea & Coffee and chocolate biscuits!

@autismbuddies12

autismbuddies@outlook.com

 

Social Care or Social Neglect

 

With failings currently across the system of social care, what do we attach to some authorities in the land will of cause blame Covid, but in some cases this might be true, however, we know that all this did was show and even exacerbate what was already there.

 

In my research and understanding of the facts, I am now given to believe that there are some departments within social services that have shed quite some social workers because of cost-cutting, and possibly they were taken into the fold because of the rise of covid or was it because they claim they simply just could not cope with the amount of workload, something I find hard to believe because they could have made it easier upon themselves by the intervention of technology for meeting with individuals. I with my PA underwent this from a social worker we recommended it and it was taken up by the said local authority, and possibly in fact this is something they may wish to continue to use in the future as it means they can work directly within their own office meaning that they can see more people and cut down on traveling and meaning that they become more effective and efficient.

 

However, what we are seeing is social neglect and bad attitude from social care, and trying to get information from social care is like wading through thick treacle and hitting the eternal brick wall or if you get an answer it is often patronizing and not very helpful information and then you start to question your sanity.

 

Should you receive a direct payment or personal budget which by the way there is nothing personal about it then you are subjected to being treated like a fraudulent person and you have to submit three months of invoices and or timesheets depending on how you employ your care staff and if a penny is out of place they castigate you forever and make your life hell and put you into there own traffic light system, or the black list as this person can’t be trusted. Because of one mistake they try and make you attend a workshop which you are not obliged to attend on money management it is wrong and offensive.

 

I know of some disabled people who are put into a role of responsibilities which often puts them into a fear and dread position when trying to recruit appropriate care staff and just try and recruit them for such low rates of pay. This is however dependent on the rate that your local authority pays you and I have for many years had blazing rows with local authorities and why do pay at such a low rate and yet care agencies get almost double, and their response is because they have more responsibilities, yes and we don’t utter rubbish and balderdash!

 

Oh, its to do with recruitment or some like that and their other costs. We know there is no support package given for us to tap into recruitment agencies so that we can get the right staff and this is the same if you are under continuing healthcare or a mix of both from the local authority. The insurance can be exorbitant and when things go wrong we are to blame for the mistakes, so technically the local authority is at blame as they are the in-between organization who treats us with disgust. I know for one as someone with autism and I would find it very difficult to find the right staff if I did not have friends or family and had a special arrangement with the local authority, but for how much longer. The problem is the rate of pay and they simply have no idea what that level of responsibility is when someone has complex needs and complex at the physical end as well and major difficulties that no one can be bothered to take note off.

 

For people who pay interest in what I write, right I have Ehlers Danlos-Syndrome which is a connective tissue disorder but causes major issues, so if I am hit with an asthma attack a chest infection, and or cellulitis it weakens me and so my mobility is shot to pieces, it also messes with me psychologically because I also have Autism and Complex PTSD or Complex Trauma, but I do not get a big package of care and support and I get very little for the autism and nothing for mental health support.

 

Then we also find out that there is a lack of coproduction in the local authority because when a commissioner gets the flu or jumps ship to take up a promotional role in another local authority and they do not replace them with a person to take over and promote coproduction no they replace it with citizens panels. Or is within this local authority or London borough they call it coproduction but replace it with consultation exercises which are not very helpful then they get some big shot person in who then decides behind the people who are recipients of the care they get to do wholesale cuts across the services which have dire consequences for the individuals and or they to refer them directly to continuing healthcare who can only cover some of the costs and then we get this ping pong effect between health and social care and who loses, in the end, the recipient of the care package and this then is social neglect.

Mental health deserves respect!

 

Last week 7^th May was  going to be a day of hell for me, why because I was expecting a call from I thought finally an Asthma nurse, possibly prompted by a spell in hospital as a result of a combined Asthma attack and combined chest infection, not nice when you're struggling to throw up and then get your breath and your fitting, etc

 

To cut a long story short so I got not a qualified Asthma nurse, but an advanced Paramedic who because she had personal experience of asthma this condition thought that she had the experience as a qualified medic to deal with my review, sorry she had no idea and referred me to a doctor. This is where the nightmare begins.

 

On the 8^th of May, I went over to the doctor and I was apprehensive enough because I also have Complex PTSD and it scares the shit out of me when I have to see someone I am not sure of, anyway I got in to see him and we went through the usual load of claptrap and general lack of respect towards me as he was awful no respect towards me because of my Autism and my Complex PTSD and when I mentioned I have Ehlers Danlos Syndrome he looked at me as if I had two heads. He then questioned my diagnosis of Asthma and this nearly erupted into a row, sorry but not all people fit the classic signs of Asthma. I felt so raw when I came out of the surgery that I feel that it has left me lacking in confidence in my doctor's surgery, that I am using alternative and complementary therapies to help with a complex situation, and I am not going back until the matter has been dealt with.

 

The problem I and most people have is that of trust, it stems from people in authority this could be people like Police, Teachers, Parents, Doctors, Consultants, Nurses, and more, and unfortunately, if you have been through physical and sexual abuse you find it more and more difficult to deal with these people.

 

The other issue is that I want my medical notes flagged for being Autistic and having Complex PTSD as going into any medical place is a real problem for me and why should we have to do this because there is a genuine lack of respect and this goes both ways if they want us to respect them then they should respect us.

 

I also came out last year as a Gay man and I am proud of that and so I had this changed on my medical records so they could tick their diversity box, shame they couldn’t tick their equality box, my advice now is to write down how you wanted to be treated and hand this into each GP you have to see or consultant and it’s a sort of passport because I have had enough of being treated like an idiot.