“Biologically the species is the accumulation of the experiments of all its successful individuals since the beginning.” H. G. Wells
We are all scientists: we may not all be sitting in a laboratory; we might not be bent over a microscope; we don’t all sit scowling at a dataset looking for patterns or aberrations; we may not have a design, but our lives are a shaped by a succession of trials and endeavours, consciously embarked upon or not, that move us forward. Or hold us back.
When you suffer or experience mental ill-health, experimentation is often the first thing line of defence. How can I stop feeling like this? What measures can I take to mitigate what is churning and twisting away inside myself? Or, how can I help this person I see suffering so badly? And sometimes you believe that nothing will work. And you try not trying at all. You believe this path to wellness is too long and too impossible to walk along; that no amount of intervention will help.
This blog post is about my experiment to wellness. It is based on almost thirty-six years of living in this skin with moods that shift like dunes of sand in the desert.
Today marked a milestone in my treatment for bipolar disorder. Over the past few weeks I have decided to come off my medication completely. This has meant weaning off powerful psychotropic medicines that were introduced to help me weather my own condition and give me space to live as much of a productive life as possible. Except they did not do this. Since 2009, I have been on a constant regime of alternating mood stabilisers, antidepressants, antipsychotics, benzodiazepines, and sleep medications. I have had to add in a simvastatin because of the side-effects of the antipsychotics. I have had allergic reactions to medications and have on occasion frequented A&E because of the severity of the reactions. I put on weight, despite regular exercise and a controlled and healthy diet. I was sedated in the mornings, so much so that functioning at work was often a struggle. I was often confused as I tried to fight through the sedation. I stuttered. I found reading impossible. I did not want to socialise because I felt gross and detached and lousy. And still I was unwell. My mood was an ever-present problem. But what to do? The solution was always, “Let’s trial a new medication and see what happens.” My prescription remained in flux, my mood so too.
I first started taking medication for severe depression in 2001 and remained on antidepressants for five years. In 2005, after completing my Master’s degree, and moving onto further postgraduate study, I began to deteriorate rapidly and was diagnosed with bipolar disorder and more medication was added to the mix – a mood stabiliser and an antipsychotic. By June of 2006, I was in hospital and my life had entered its first free-fall. I was on three separate medications and I was still unwell, so unwell that I had lost the capacity to make the right choices about my own wellbeing and treatment. I left hospital on the same medications. By the end of August, I had withdrawn from postgraduate study and returned to live with my family. Home was to be a safe place where I was not alone and did not have to manage my own wellbeing unsupported. I arranged to start seeing a psychotherapist.
In January of 2007, I embarked on my first experiment: I would stop taking my medication and try to address some deeper factors that might have been significant contributory factors to my crisis of the previous year. The diagnosis itself had not settled well with me and I wanted to help myself, unpolluted by pharmaceuticals. So overnight I stopped taking everything. No weaning, I said to myself: no weaning because I couldn’t stand the idea of a slow, sickly process of fiddling around with doses and speaking with medical professionals who had told me that I had to accept being on medication for the rest of my life. I wanted to be clean and as fast as possible. I would take withdrawal and deal with it as it came, horrible as it might be. And it was. It was horrific. I don’t think I have ever felt so incredibly ill as I did when the withdrawal hit me. I would not EVER recommend going “cold turkey” from any medication, no matter what the dose. But I pushed through it: vomiting, shaking, heart beating erratically, shivering, sweating, delirious. And at the end, after I had felt closer to death than even at my lowest, most depressed points, I put my energies back into finding a place for myself in the world. I attended therapy regularly and worked full-time. I got my life back and successes returned. I had made progress in carving out a new self that was not defined by what I had suffered and what I had done to myself when at my most unwell. I had not, however, come to terms with my diagnosis and it remained like a shadow that followed me around: I didn’t not trust it, but my return to productive existence made me wary of how pertinent it was to my overall life. I most certainly did not want it to be an obstacle to whatever I did next.
In 2008, I started my PGCE. I did register myself as having a disability with the university, but could not quite bring myself to writing ‘bipolar disorder’ on the form. Instead I wrote ‘depression’ – this sickens me now because I had written down what I thought would be ‘mental illness lite’, which belittled the seriousness of chronic and debilitating depression. I simply couldn’t bear to see the words ‘bipolar disorder’ and my name associated with one another. I didn’t want the two entwined and self-defining. I didn’t want it to curse me to further failure. And this defiance propelled me through my teacher training: I would push harder; I would rage against myself; I never allowed myself to get in my own way; I would learn from adversity, not let it overcome me. All the while I felt that momentum was building ever so gradually and I was beating the demon on my back. Holding the certificate in my hand, and having what I believed would be the perfect job, represented the greatest defiant act against my diagnosis. And it still does, despite how ill I was to become not that long into my teacher career.
By the first half term of my NQT year, in 2009, I felt the stability I had been so belligerent in pursuing begin to slip. In fear of losing myself again, I sought help immediately and accepted that to some extent ‘bipolar disorder’ and me did have some coexistence. But again my rage at the prospect of being defined, or defining myself, by a diagnosis shaped my decisions. I agreed to medication once more: I began taking a mood stabiliser and briefly an antipsychotic (the latter made standing in front of a class or focusing impossible, so I junked that almost immediately). Things evened out and the momentum began to build again, my employers being surprisingly unfazed and supportive of my wobble. Begrudgingly, I accepted that whatever part of me that was apt to go its own way should be kept in check. But I did feel encumbered and heavy in my thinking and angry that sometimes I couldn’t work at the speed I wanted or fulfil the expectations of my job to the standards I demanded of myself. When I had more responsibilities, I was even more frustrated that I couldn’t shift into the next gear and prove that the faith that people had put in me was justified. And so… And so I saw no option but to stop taking my medication again. It is important to note at this point however, that I had already become unwell again, partly due to perceived inertia and a desperation that I was doing too much but not enough, and that not taking medication was a decision motivated by ill-health not simply a frustration at not being enough to meet the demands of my job. This experiment was less immediate in terms of the duration I came off the medication, but more immediate in its consequences. Within a week, I started to feel fuelled by something unreal and frightening. I could no longer conjure up any semblance of wellbeing and I began to fall into ever smaller pieces. There perhaps could be space here to talk about failures around me, but that is not the purpose of this blog post. I was signed off sick for four months and rightly so. I was very unwell and needed to be treated intensively. During this period I took my medication as instructed and got back to work, bruised and humiliated by the entire affair, but well enough to stand in front of a class and teach once again. All around me, including myself, hoped that treatment and compliance would allow me to get my life back and move forward (regain my positive momentum). But despite all my attempts at remaining well and being productive, no amount of medication did enough to help me stay stable. Pressures around me added to my feelings of lack of self-worth, and the sense that trust could never be rebuilt got in the way. Along the way, however, I had completed the postgraduate research that I had intended, but that was the last really productive thing I did in 2012 and by April I had handed in my resignation. I placed my ID badge on the table of my department office at the end of the summer term and walked off site without a single word.
I have not been in any sense well since 2012. I have been on a cocktail of drugs. I work and am successful at my job, but I do not earn much and cannot work many hours. The balance of my life has tipped: productivity has been curtailed by ill-health and medication, and treatment has taken over almost every facet on my non-working hours. The number of pills and doses I have taken has increased and my periods of peace have still not been sustained. I feel lousy from the side-effects and not myself. My thinking is addled and often still irrational and terrifying. My consultant understands my frustration and pain, but to a large extent sometimes he feels like a drug pusher. At the end of September this year he suggested yet another change, this time two drugs that to me seemed a bridge too far. They might work, but then again they might not and at the same time would very likely include some very dramatic and unpleasant side-effects. I said I would give it some serious thought. And I have.
I have had enough of life on drugs. I have had enough of putting a myriad of pills and tablets into my dosette organiser every week. I have had enough of taking all these and still feeling no better. I have no confidence that “we” have any real idea what is helping and to what extent. So, enough. Today marks the second day where I am not taking anything at all apart from diazepam as a bolt-on PRN. My psychiatrist refers to this period as “an experiment” and something that between us today there is agreement that the risks are starting to mount up. Initially, I was super-productive, creative and purposeful. This lasted about three weeks and I hoped that some transformation was taking place; I felt more in common with myself again and able to make decisions without any quicksilver of anxiety. I didn’t feel sad and slow and lost. I was the person that I recognised but feared had all but vanished. It was like being at a dinner party where every honoured guest was myself. How fabulous and how incredible! But as is the way of things, the party reached the wee hours and the guests began to slope away into the night. And with them they stole away the light.
Today I explained to my psychiatrist that I felt lost: I was dangling from a precipice by a fine thread, my body surrounded by mist. I felt like a ghost or perhaps that I was death. I feel things lack purchase and I’m living on borrowed time. This might, to most people, be the revelation that would prompt a reassessment of this “experiment”, but I want to see this to the end because perhaps I’m still not clean enough to be well. Or not well enough to be clean. I want this to be the “accumulation of the experiments of all its successful individuals since the beginning” because this cannot be a life. A life on drugs is no life at all. For me, I need to burn to the end to know, with certainty, that what slumbers beneath all the pills cannot be held together on its own. I want to see if I can learn to learn again from how I’m feeling.
As Isaac Newton once said, “It is the weight, not numbers of experiments that is to be regarded.”
In the end, if this all goes horribly wrong, perhaps this will be the last experiment that I ever conduct, but I’m not ready to give back my agency just yet.
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Gulliver Unravelled 