I am worthy

I’m stuck in a rut. This is how I’ve been feeling lately. I’ve tried to write this pages so many times and it always goes back to where do I start. There is so much to say, there is so much to sort when everything has disintegrated. That’s literally what my life feels like. For the last few years it feels like I’ve watched it in slow motion but during the process of self reflection the process of unraveling started even before that. I have a few unpublished posts that where written in desperation at a time I just needed to get shit out of my head then I started an instagram page: identity4422 on 30 January 2019. I had to fight my demons. 22 January 2019 everything came to a halt for me. My body and mind became exhausted. My soul was exhausted and my body went into complete shut down and my mind was manic. My body and mind were so stressed that for the first time in my life I lost verbal communication. I could not talk. My body was riddled with a kidney infection and my limbs refused to work. I was experiencing what is known as autistic burn out. Prior to this I have been facing very stressful situations with little or no help from medical professionals who have a duty of care to help me. I have had many battles with my mental health through my adult life; including battling with my personal stigma of the disease and society’s stigma towards the disease. I have also been battling with the stigma of being a health care professional living with a mental health illness, knowing how these group of patients are viewed by my colleagues. I have discovered that when people don’t know you are affiliated to a cause, they are able to speak openly about their prejudices and biases with no fear of repercussions or fear of having to put on the professional script. I have also been battling my expectations of the current medical systems and I am currently struggling to understand why I am currently in the situation I find myself. I have been managing severe depression and anxiety more or less by myself with little or no input from medical professionals who could help me. For what ever reason, I have been bounced from pillar to post. I have had to pay for a private diagnosis of Autism and I was also recently also diagnosed for severe ADHD; also a private diagnosis. For the last 5 months, I have been sporadically managed over the phone as a goodwill gesture by the psychiatrist that diagnosed me for ADHD. This man has made himself available at crisis periods because he is aware that there is no input from my primary care providers. It’s almost like I’ve been left to rot. Myself and my family. And it’s not okay. When I think of the fight ahead of me sometimes I get overwhelmed and the thought of not waking up in the morning seems more enticing but I don’t have that luxury. I don’t even have the luxury of ending my life because I will leave 4 hearts beating with the same pain I am trying to escape. But at the same time, I am sick and tired of being sick and tired. I am tired of living like this. Does anyone know what it feels like to forget what it feels like to live? I’ve completely lost my structure. I have executive dysfunction and I have totally lost structure which I heavily rely on. I have totally lost my confidence, my self esteem, my self worth, I am at an all time low. I actually have been blagging it for a long time and truth be told I hate what my life has become including how I’ve let myself go. Self care is lacking and I just hide myself away at home not really achieving much but too scared to go out into the real world. I have cut myself off from the real world (in hindsight, that’s how I’ve lived most of my life; fantasy, mimicking, copying) because now I know my truth, I am aware that my prior existence in the real world was based on fantasy. I am a 40 year old black woman who navigated life without an autism diagnosis. I recognised I was autistic when in my professional capacity, I recognised symptoms and my struggles in this client group. I could have wept with elation when I started recognising my struggles in these females and suddenly my life began to make sense. At last I felt I could work with my GP and finally a magic wand will be waved and all will be well in my life again. Again this is my naive self and mind always ready to romanticise a situation but as most things in my life reality always gives me a rude shock. I owe it to myself and my family to get better and get the help I need to get better. My fear and anxiety of professionals is another reason I don’t really engage with them. I am fully aware of the power relationship in the doctor- patient relationship and how professionals have abused their position either due to their egos or lack of understanding. As a professional one of my major issues with the system was its fragmented delivery. This in my opinion is due to the lack of understanding of policy makers in not taking into consideration how mental illness affects the family unit. While the current mental health campaigns places greater emphasis on prevention and early intervention, in reality, the current systems are not designed to promote recovery. And when you actually look at it, there is no money to be made from total recovery. The system is designed to contain and treat symptoms. In treatment of symptoms, the pharmaceutical companies are able to find more research into better ways of keeping symptoms at bay; longer and longer. While I recognise that at present I need medication because I am a place where I have fought for so long that as part of recovery, I have to treat the chemical imbalance with medication until I am in a better place to substitute with healthy alternatives. I am even content in the knowledge that I may have to medicate for the rest of my life if needs be and that too is okay. This has been a journey for me. A process; a process of self discovery, a process of self acceptance, a process of finding my identity and conscious awareness. A journey to finding and living in my purpose and falling in love with my authentic self. I have fought this process a long time and the only thing I achieved was a broken mind and body. So it was wise to surrender. Surrender to the process and learn to meet and love my authentic self. I have decided that it is within me to change my life and I will try my hardest one day at a time. I am not happy how my life has become but now talk is cheap and I have to do something about it. It’s called personal responsibility so tomorrow I will register myself to a new GP practice. I have health issues that need attending from since I had my son 4 and a half years ago. I will document my fight to health and my fight to be treated like a human being. My current experience of the health care system is that I have been treated less than human and I have been left in compromising situations due to the lack of care; the worst being when I had actually tied a noose at the lowest point in my life. Had my baby not cried at the right time, logical would have not come back and my story would have been told from someone else’s perspective. This is my story and I get to tell it and in telling it I get to write the ending. I am worthy of happiness. I am worthy of a healthy mind and a healthy body and I am worthy of love. Yes even autistic me. I am worthy of love. #mentalillness #depression #anxiety #autism #actuallyautistic #newdiagnosis #ptsd #midlifecrisis #selflove #mentalhealthwarrior #blackmentalhealthmatters #blackandautistic #consciousawakening #processingdiagnosis #righttotreatment #humanrights #autismact #poortreatment #selfadvocacy

Written 23/01/19 @ 19:34 hours. To my females with Aspergers group and females with adhd group. Not so sure about the response though

Good evening ladies. I’m at crossroads in my career well I’m at crossroad with everything in my life at the moment but I will like to address career today.
I am a paediatric nurse with 16 years experience. I love nursing children. However the politics and everything else that came with it really put me off. I had to leave clinical nursing for family balance and I have been working in commissioning. I have become so frustrated with the system that I no longer want to be a part of it. My job entails assessing children who have health needs over and above is being currently provided by the NHS. I recommend the support packages needed to support their health and sit on a panel with social care and education (who have also assessed as required) to request funding for the recommended packages. I see the suffering and understand the suffering of families ( because I am those families in my private life) and listen to the responses and views of the professionals on the panel. I see how much money is being squandered on reaction to crisis instead of investment to save in support systems that actually make a difference. I see support systems created by people with good intentions who haven’t got a clue that their amazing ideas are actually not what the service users need or they will never engage with the service because the lack of understanding of the service users needs has made it not fit for purpose. I have lost all belief in a system I represent and I don’t know what to do about it.
I am trying to be rationale and not walk away from my job as it is contract and that ends in March. Financially I am not able to leave my job and doing so will make things worse. So I am trying to find a plan that will keep me going knowing that I will eventually be able to do something that truly makes a difference.
My thoughts were to try and create a service that supports women and females on the spectrum especially women with late diagnosis. I am one of those women and Autism is not one of my problems. As an adult woman most of my problems are the traumas I live with that developed as a result of not being supported as a person with autism and my struggles to compensate for my limitations. That is individual to most people with autism that’s why we don’t all turn out the same. We are individuals, we are people, we are different. You know one autistic person, you know one autistic person. You get the gist.
I am thinking of sending out a survey to as many women with autism as I can. The criteria will be late diagnosis 18 and above so all adult women.

I will like to know if they had access to a support service what support would they require to lead a functional life

What does a functional/ fulfilling life mean for you?

Secondly what are the issues women have struggled with that led them to seeking diagnosis

Would you be interested in helping with my survey please? I need to do something and I need to start somewhere. I apologise for taking up your time.
I’d appreciate it if you are able to show your interest in the comments below.
I will also post in the ADHD group as well because we coexist in many cases and it will make sense to have a service that includes both.

Thank you.

Sharing a thought on 20/01/19 @ 03:09 hours

Today I can finally admit I was a fraud. Nobody knew me because I didn’t know myself.

The beginning

I have started this blog for my sanity or what is left of it. I am at a place where I am struggling to stay alive. The sucidal thoughts are strong. I am fighting on a daily basis for the children that have chosen my as their mother. Right now I don’t feel worthy and I know I am letting them down but the biggest guilt is the emotional deficit that my leaving this world will cause in their lives. However I cannot continue to live like this because for me death before you die is worse than physical death.
My struggles with mental health has been for most of my adult life and I had struggles as a child. I came from a place of fear of Mental illness, ignorance of mental health, fear of Mental health, fear of people finding out and ignorance regarding treatment. Being a black African woman with first hand knowledge of the stigma of Mental health was real. My uncle has schizophrenia and I witnessed and still witness the suffering he has had to endure due to his illness.
I continued to go around in circles in survival mode as a functional depressive. It seemed that all my efforts where failing, life started to close in on me and at that point I came to the realisation that I had to surrender.
My life did not make sense. I didn’t even like the person I had become. It had got to that’s point where I started to question my identity:
“Who am I?”
“What is my purpose?”

The “Who am I” was the hardest journey I have ever had to go through in my life. Most people at one point or another ask this question because it is not uncommon for us to lose ourselves in the journey of life being a parent, a spouse, trying to secure financial security e.t.c but for me the farther back in life I went I realised that I had always struggled with identity. In trying to find my identity I have opened the proverbial PANDORA’s BOX.
This is a journey that I have had to take alone because of my deep rooted distrust. I had discovered that my struggles stem from the desperation of trying to fit in and trying to navigate a neurotypical world with a lack of understanding.
I was recently diagnosed with ASD ( formerly Aspergers) PDA (Pathological Demand Avoidance) subtype. I was also diagnosed with severe ADHD.
I cannot find the words to describe the last 4 years of my life but I have had to face the demon that has kept kept me in bondage to start to release myself. The demon of FEAR.
Now I realise that in order to move forward I have to release the Demon of SHAME. I have realised that in order for me to live in my truth I have to rewire my brain of it’s learned behaviour. In my quest for direction I have to be clear so that I attract the energy that will bring positivity and light to me life.
I will like to use this platform to release my thoughts, to get and receive encouragement, for healing, for practical advice, for forgiveness, to find peace, for self acceptance, to promote awareness, for education, to stomp out ignorance.
I am on a journey to master self love in the discovery of the person I was create to be.
I am grateful for my journey so far because through the pain I am realising that life journey is preparation for my greater good.
I am on a journey to finding my purpose.