It’s been a while since I posted here, not because of a lack of good intentions but simply because there was barely enough time to breathe last year, let alone find the time to update my website.
I returned to work at the end of 2020 to begin a PhD at the University of Nottingham with the Horizon CDT. All was going well until the medication that I had used to control my mental health stopped working shortly afterward. I was plunged into a hell of dealing with both a heightened presentation of the kind I hadn’t experienced in years as well as the turmoil of trying to find an alternative means of managing it. My reproductive cycle and mental health are inextricably linked. If I ovulate I go mad – experiencing two weeks of irrationality every month within which there is usually five days of being actively suicidal. Three different types of hormonal drug later, and two stints in hospital for my own safety I finally found a new pill that appeared to be working and things settled down again.
Being a good citizen I undertook to have the Covid-19 vaccine in March 2021, without realising that emerging research was indicating that this, in a small percentage of women, affected their hormonal contraceptives. Of course it did in my case. After having a stable four years I was thrust back into the midst of trying to deal with the monthly hell of coping with the madness and instability, knowing the pain and grief this was causing my family as well.
June 2021 was a landmark. After exhausting all the expertise in Derbyshire in both mental health and gynaecology I was referred down to a specialist clinic in London led by the amazing Dr Michael Craig, who is the only clinician to sit jointly as a fellow on the Royal College of Psychiatrists and the Royal College of Obstetricians and Gynaecologists. Dr Craig identified that I sit on the bipolar spectrum as well as the autistic spectrum, which was key to unlocking what had been going on for me for the last ten years.
My menstrual cycle hormonal changes across each month are what trigger the bipolar presentation. I have apparently lived with this since I entered puberty however it became much worse since I had my son in 2012. What really hurt at the time was the fact that Dr Craig explained that with the right management it probably would have been possible for me to have more children safely. There was a period of grieving I had to work through in order to deal with this fact. I chose not to have more children because, despite not knowing what I was experiencing, I knew instinctively there was a risk of things becoming worse again. This would have jeopardised the well being of my family and my very young child, which I simply could not do.
Learning more about what my mental health challenges meant for me, statistically speaking was incredibly difficult. I experience rapid cycling (switching between hypomanic, lucid and depressed sometimes on a daily or even an hourly basis) and a mixed presentation called dysphoric hypomania. This places me at a much higher risk of accidental death because of self-harm and suicide as well. This is in addition to the risk of successfully committing suicide that autistic women are subject to, a reversal of the usual trend for neurotypical adults where men are most likely to successfully die at their own hand. These are the realities of the data and literature that I interact with as a part of my studies, only unlike most academics I live the reality of this research in a way that many do not.
After a particularly challenging three months between April and July 2021 when my son’s school placement failed I ran out of every personal resource I had available to me. My family caught covid in July and after coping as best I could with the luteal phase bipolar presentation for each of the four months since my vaccination I experienced the most intense episode yet whilst infected with the coronavirus. The feelings I was coping with were so intense. I tried to seek help but was told that there was nowhere I could go for support until my self-isolation period had finished. Three days after this in an attempt to manage the deeply intense and distressing feelings I had, whilst on diazepam, I drank alcohol as well. The end result was a weekend in intensive care, part of which was spent on a ventilator because my respiratory system collapsed. I was sectioned, awaiting assessment and ended up spending nearly a month away from my home and family desperately trying to get better.
I came home in September. My son was starting his new school and despite feeling incredibly fragile I hoped that things had turned a corner.
The reality proved quite different.
The school who said they would be able to support my son in his education failed abysmally. There were constant issues. His one-to-one, specially trained support was never recruited. Simple items required for his sensory diet took over a month to be put into place which only happened after constant chasing. There was no plan to get him into school full time.
I never really got any time to recover during those last three months of 2021. In desperation I tried a tiny dose of a mood stabiliser recommended by Dr Craig, even though the risks of having an extremely bad reaction were high, based upon past experiences of medication I had tried. Even with amazing support from the crisis team in Derby, after a week of taking this I was unable to keep myself safe and was placed under a Section 2 of the Mental Health Act for my own safety. I spent another three weeks in hospital all together recovering.
Despite this being a distressing period, the time in hospital gave me an opportunity to pause and re-evaluate what I needed. Getting fed up with waiting for the NHS to provide some talking therapies, I found an amazing practitioner a five minute walk from my house. I was able to get some rest, revitalising myself in a way that had simply not been possible at home for the previous half year. Of course all this was a pressure for my partner who coped amazingly well, caring for our son at home. I came home with some mental space and physical energy. Christmas was spent together at home which was a joy; a respite for us all to spend time together as a family in a way that had not been possible for a long time.
Between January of this year and last week things had begun to stabilise. I was back at work full time, my son had started an EOTAS package building up a relationship with his tutor after leaving his second mainstream primary. Things were pretty secure. I felt content and like problems were settling.
Unfortunately the tutor with whom my son had worked so closely unfortunately had to leave at very short notice. This arrangement had been the lynchpin of the plan that was supposed to carry us into the new school year. Everything has once again collapsed and my mental health followed shortly after.
The time and energy his tutor and I had invested in settling M and finding out what he needed had all come to nothing. I experienced a major trauma reaction – I didn’t know how on earth I was going to start again at the beginning and pick up the pieces of this mess whilst carrying all the other responsibilities I have. Despite my best efforts to manage what was happening I started rapid cycling again and could see an impending crisis of the magnitude of both those I experienced in 2021.
So, I reach the point where I am sitting writing this. It is 0345am on the 4th July 2022. I am in a crisis house. It was my fortieth birthday last Friday, which I spent here away from my partner and our son.
Despite this, I am feeling hopeful.
The new knowledge that I have about my mood has enabled me to take positive steps to avoid a crisis before it reaches a boiling point where I am really at risk. I have survived and thrived in the last ten years of my life in spite of all the challenges and heartache that I have experienced. Things have been incredibly difficult for my partner and I. There were many times I wondered if and how we would get through the problems and difficulties that we have faced together since our son was born. Yet we have. I have had doubts and acted in ways that have hurt my partner terribly, but we are still together, still fighting for one another and still loving each other.
I enter the next ten years of my life better supported, with more understanding of myself and a firmer grasp on the person that I am than many people manage to achieve in a lifetime. I am proud of what I have achieved. I am more proud of my family for coming through all this with me and in particular big M, little M’s dad for being an amazing parent and partner, there holding it together at the times when I have been less able to.
Part of what has been instrumental in my ability to continue was a growing interest in Buddhism. Although I don’t (yet) consider this to be a personal religious practice, the idea of living with the present moment, living with adversity and finding joy in the most challenging of situations have been a significant contributor to my recovery. I have been able to conceive of my experiences as something beyond a medical diagnosis and manifestations of illness. I truly don’t know who or what I am. The older I get, the less I realise I know about the world and the people in my life. The not knowing makes the anticipation more tantalising. I am still excited about the journey I am on and grateful to have the love and support of the people I share it with.
I hope I can have as much joy in the next ten years as I have in the past. I look forward to the new adventures life will throw at me, watching my son grow into a man and growing closer to the other man that I have loved for the last twelve years.
