Coming off Medication 2
Since attending the Maastricht conference in September 09, I have been reading up on medication reduction, I have been reading Peter Lehmann’s excellent edited ‘Coming Off Psychiatric Drugs’ and the users experiences recounted in it.
Back in January 2009 I was still working as a taxi driver, I was working 6 days a week and long hours, I had been capitalising on the bank holidays to get extra money and was tired. Additionally family life was hard, familial visiting rites had taken it out on my spouse, to do with issues that I’d rather not go into, suffice to say that I saw by proxy, through the way my partner was treated, the way I was treated in the compex web of family relations and power plays, an interpersonal communicative diagram that I now believe led to my original breakdown and what I had assumed was recovery but had in large part been merely a maintenance, a subjection facilitated by medication. This experience gave me an awareness of a diagram that has given me a fresh perspective on and appreciation, or rather personal understanding, of Hegel and Lacan. In fact it is this awareness that has led to a self-understanding that has helped me understand my own crisis of being (what I prefer to call my breakdown rather than an illness) to the extent that I am in a position to have the strength, confidence and ability to recover enough to consider coming off medication.
Returning to my working as a taxi driver. I was working long hours, family life was hard, and I was taking 4mg of Risperidone nightly. I was knackered. However, I found that the concentration and hard work (stress?) helped reduce my voices (there was another factor that I shall come to that was helping but I wasn’t aware of it at the time). I went to the doctors. I couldn’t do anything about the hours, I had to earn £18500 a year to cover my costs before making a profit. Flexible hours and fixed costs meant that once I’d covered the costs, the more hours I worked the more per hour I was earning (if you ever see a job advertised as working the hours you choose, but that has such high fixed costs, i.e taxi driving, driving instructor. Laugh in their faces. Laugh hard). I couldn’t do anything about the (home) family situation, I can’t change my (birth) family. I could change my medication. I asked the doctor if I could reduce my dosage to help with the tiredness. He agreed that it might help and I was stable, my medication was reduced to 3mg.
I was still knackered. I had to give up my job. However, having decided to see if I could do a full time job after years of crisis recovery (illness) in the six months in which I did so, the government changed the law. From one of ‘we realise you have difficulties/ a disability and it would suit us if you worked so we will help you get one but you are entitled to support and welfare as a human right, one fought for for years, but no pressure’ to ‘we are getting pressure from the reactionary right wing and we want to show we are tough so although we will push even harder the veneer of no pressure/ support/ entitlement to keep the liberals happy in fact we will make the qualifying tests more punitive’. The law had changed from Incapacity Benefit to Employment and Support Allowance and over a year later I am still battling with it.
So I was without a job and exhausted. I started looking for another one, because of my previous training as a mental health advocate I started looking for care work, even signing up to an employment agency. This was still January 09 and I hadn’t been to the conference yet, nor even knew of it. However I was at the time in the process of setting up a Hearing Voices Group, I had been seeing a psychologist through the NHS for what was supposed to be a mix of CBT and psychoanalysis but seemed to be mainly psychoanalysis, the attempts at installing a CBT regime early on had been dropped as I don’t behave. As a child my behaviour regime had been largely a form of guilt tripping – ‘Don’t do that or you’ll make mummy upset’ which any good therapist will tell you keeps them employed. The other form had been institutionalised discipline at my boarding school. Both forms of discipline I react strongly against, one with anger, the other with general refusal, hence my incompatibility with CBT but ease with psychoanalysis. I can talk about myself for hours as long as I have a trained willing listener, otherwise I feel guilty for wasting your time. I had previously attended one of this psychologist’s Hearing Voices Groups and had long talked to him about setting up another group, he had asked me to run one of his but due to the pressures and strains of NHS working practices this never materialised. Then one day he said to me, there’s an RMN at another centre who wants to start a group up, she’d like to talk to you. So I ended up helping set a group up. However to do this I had to run the gamut of NHS volunteer working practices which resulted in me seeing a support worker to get me work (technically within the NHS but a she helped me look further afield), this included advice on benefits including Tax Credits. I was advised not to follow the a path of the employment agency as to get Working Tax Credits I would have to work regularly over 18 hours a week, but due to my exhaustion and the difficulties I had been having with my voices ( my voices had got worse after giving up work) as well as the situation at home I probably couldn’t work more than 20, keeping these narrowly defined hours of work regularly through an employment agency would be difficult and if I lost the Working Tax Credit I could be worse off than I would be claimimg benefits, it would be far better to look for a more permanent contract, so I went through the process of looking for jobs.
I still had my taxi licence so there was the possibility of getting part-time jockeying although the pay-off I was learning would be worse than full-time taxiing. I was still looking for care work (and other jobs) but getting nowhere. However I had more free time and as the taxi driving had always been a means to an end, i.e. a means to fund my PhD, a means I was realising more and more was financially impossible, my partner and I decided I would focus on getting a proposal for that together whilst focusing on other things. One of which would be restarting the proof-reading training I had started but required an administration fee to continue as it had been so long since I’d let it slide… I still haven’t paid that fee. However I was phoned up by a guy from the local community radio, who offered me a show, I had sent a proposal in months ago and they liked it. So my life was working on the PhD proposal, co-facilitating a hearing voices group and doing a 4-weekly Contemporary Arts Show on community radio and looking for work. However family life was still hard, my partner was still having difficulties and giving her the time of day required to keep our family together was taking up a large part of the day, I knew why this was and knew why it was worth it but it was emotionally exhausting and my voices were haywire, sometimes I was far better, however at other times I was talking to myself more, even in the street, something I had only previously done before when drunk. But I had more energy and we agreed I didn’t want to go back to 4mg, not least as we were co-sleeping with our son and my partner was concerned about how heavily my medication made me sleep, he slept on her side, in a cot with the side down, so that he could roll over to feed without waking her too much but it was still a concern.
As it turns out this decision would lead to me making some self-realisations that would lead to me taking the path I am now on. My partner and i were arguing, I was giving extra support with child care because we were both exhausted, not least my partner was getting insomnia. The tiredness would also lead to distress for both parties, hence more anxiety, hence, in part, for me more voices. The other part was the reduced medication. Not though because I was getting worse again. I wasn’t in a crisis but I was getting in touch with emotions i had not had for years. I found myself crying, I had not cried except when drunk since I was first put on medication. I found myself getting angry, and I found myself realising this was because my needs were not getting met, they never had, I didn’t know how to ask for them to be. I’d never been given the skills, To help our situation my partner and I bought a book on Non-Violent Communication by Marshall Rosenberg, now I am not talking as a convert, I find the methods, awkward and unnatural but it did give me an awareness that I had difficulty expressing my feelings and hence getting my needs met. I also discovered that I was married to the only person who had ever listened to me, truly listened to me, and the arguments stemmed from communication breakdowns when we were both too tired to listen to each other and the old learned reactions to stress kicked in. But I had met some one who acknowledged me as me, hence, although at times of anxiety my voices got worse, in times of calm, things were better than they had ever been.
Through the Hearing Voices group I got to attend the Hearing Voices conference in Maastricht in September, I about the harm reduction method of medication reduction. I decided to do further research.
I also learned from the Lehmann book, reading the accounts of medication withdrawal that the emotions that I had been going through, were not just because of my home situation but that my medication had always smothered them.
However dues to family difficulties I missed the funding deadline for the year, I did however continue to apply for the PhD, I would do it part-time until the next round of funding when I would go full time, allowing me to work to pay for it. As it happens I did get accepted but I didn’t get a job in time and my grandmother helped with the fees.
Meanwhile I started to get used to the new emotions that I had been missing for the last 15 years, things settled down at home.
However I was having problems with my Employment and Support Allowance, I had failed my medical, I only received 6 of the minimum 15 points required, even though my legal adviser and I worked out that I could arguably have got 42, more than enough. I appealed. I went to tribunal i failed that, the GP and solicitor advising seemed to think a mental health problem was a learning disability and if I could do a PhD I could work, they never asked me about my voices so they never learnt how I use my voices as a form of Socratic method to help work out theory, what job can you do that in? They decided my exhaustion was all down to my family situation and should clear up. I get up at 6.30am, the mentally ill all get up late, negative symptoms are necessarily part of illness and have nothing to with medication as far as they’re concerned. I wasn’t allowed to speak long enough to say how it is the only time I get peace and is a necessary coping strategy to prevent me getting worse. I had written notes explaining my voices but was told not to use them, my short term memory isn’t good enough otherwise but I had no advocate to support me, the local Mind is oversubscribed as funding has been cut and my legal advisor is only paid for, according to government policy, by legal aid to help with drafting the appeal, there is no longer legal aid for the tribunal. In the meantime I was getting sick notes from my GP and he referred me to mental health services, after a long delay I saw a CPN. Initially I was to see the CPN for the allotted 7 sessions to help me deal with my family, or to stand up to them, but we ended up doing a talking therapy on my voices. My CPN was an older, experienced and highly trained CPN, stuck in the new bureaucracy doing short term maintenance work.
We discussed my voices, discussed where they came from, we talked about my boarding school experience, something I had never done before even though for 7 years I had seen a counsellor prominent with Boarding School Survivors, at the time I just had not been in the place to do so, I regret it now but he was a good counsellor and I think he recognised that it wasn’t the right time for me. We talked about my family, my relations with them and how that affected them. How the combination had led to my crisis of being. The CPN recognised that 7 sessions wasn’t enough but it was the best he could offer, before I left he told me my awareness of my issues was in advance of what the NHS could offer me, at least under current policies, and not in Sussex Partnership Trust (not that there aren’t staff with the skills in the NHS it’s just not policy to treat people long term anymore, which is what I needed. Short term CBT is the new ideology). However in the last session we discussed me reducing my medication and he referred me to a consultant.
On friday I saw that consultant. At first I though he was reacting negatively to my proposal, but as the session progressed I realised he was just covering his arse. I explained how originally, historically, medication was supposed to be temporary whilst other therapies took over it’s just that now with most research following the biological model for all the various reasons, there is no therapy now. He agreed. I told him my view on my situation, he accepted my level of awareness. He agreed to support me in reducng my medication, he even suggested he would like me to come completely off one day. In the meantime I am to take 2mg and 3 mg on alternate days for four weeks. Then reduced to 2mg daily until I feel comfortable reducing it further.
It can be done.
