I’ve been reflecting on and discussing the concept of recovery a lot lately. I meant to write quite a political post about the recovery model, about which I’ve been openly critical both on here and on social media, about how I dislike the fact that the system imposes a notion of being improved or “fixed” according to its own criteria.
But then yesterday a Home Treatment Team nurse asked me what I wanted my life to be like and suddenly I felt like I didn’t really care a damn about the term recovery, that there was no point at which I could ever say I was “recovered”. After all, don’t we all “recover” on an almost constant basis? Recover from a crisis, a panic attack, a wave of anxiety, a few bad days, a few bad months, a bout of insomnia, an unexpected trigger, side effects of medication, a period of hospitalisation?
It comes and goes in waves. There is no fixed point.
But wants and desires. That’s a different matter. What do I want?
And having thought about this more I have made you a handy infographic, which you probably can’t even see because I’ve drawn it in my lovely coloured pencils.
The outside lines represent my highest functioning zone, the blue zone, the eight (eight!) miraculous years when I was largely, although now with the benefit of hindsight I see not totally, symptom free.
During that time I had such strength. I was brave. I dragged myself out of an economically and emotionally abusive relationship (not my kids’ dad) and out of the poverty and debt their actions and inactions had created. I paid off all the creditors. I dipped my toe into the world of dating for the first time and met Tom after a number of hilariously awful encounters.
I applied to become a trainee probation officer and was offered places in two regions. I qualified top of my group with a first class degree and was first in a specialist probation officer role and then a middle manager in short spaces of time. I loved living in London and had a great time. I sang in three choirs every week and took my kids to music school every Saturday morning and I socialised a lot. Critically, I didn’t just go out for drinks and meals and going on holiday, I was able to take the initiate and plan them, and then keep to the plans.
As I have said before, I was so well then that I totally stopped thinking of myself as someone with a mental health problem. I often uncomfortably wondered why I’d decided the kids were best off with their dad during the week when there was no need for it – because I was functioning so well.
I have no hope or expectation of ever my life pushing back to those wide blue parameters.
Take another look at the zones. In the middle – red – is complete non-functionality. This is me sitting on the floor of a psych ward, crying. This is me sobbing to Home Treatment Team that I am being monitored through the light fitting. This is me coldly and calculatingly collecting everything I need for a serious overdose and hiding it in plain view in a suitcase in our bedroom. This is me, down by the tracks.
Clearly, in that level of crisis, I cannot work. 2.5 days has been the extent of my employment for the whole2016 so far and that was in January. I’m self-employed for flexibility, but that doesn’t help if I can’t get to the meetings or the phone conferences or the training events or the research interviews. Even the from home stuff becomes impossible; when very unwell I can neither read (at all) nor write professionally so document reviews and freelance articles are a no-go.
Between about July and the end of November last year I was in the orange zone. It wasn’t brilliant, I wasn’t “well”, but I managed to keep out of crisis care. Work built up a little bit and I was involved in interviews for one active research study and preparation for a brand new one with a different team. I had service user input on a series of other research proposals. I had a couple of well-received articles on the BBC Ouch! website and The Lancet Psychiatry and a brief TV interview. I went to some big health-related events on behalf of the Coalition for Collaborative Care.
I wasn’t earning big bucks and as a freelancer in the field I don’t expect I ever will, but hey, I was earning something. I was even able to contribute to the household in some way while meeting my own needs. Everything I did was interesting, everything felt like I was making a difference. I was reasonably happy. I was ticking along. TBH simply getting back there would feel like a miracle right now.
But what do I want? I suppose I want a greater level of security than that. I don’t know if I would ever actually do this, but sometimes I see half time service user researcher jobs advertised and I hanker, oh boy do I hanker, after them. I say I don’t know because although research is one thing I love, I love all he other things I do, and I love the flexibility. But the point is this: i would like to be able to apply for a job if I wanted to. I would like to be able to say, absolutely, I can be at work Mondays, Wednesdays and Fridays, or every day between two and five.
In truth, I would probably prefer to grow the business instead. Either way, I would like to be able to work three days instead of one. I would like to be able to commit to attending an event without having to add the caveats, “I hope” and/or, “if I’m well enough.” As previously stated, I want to be able to go back to choir and to yoga and to be able to fund those things myself. I want to be able to at the very least chip into the household finances.
I supposed what means is that for me, “recovery” – the green zone – means having choices. It means a reasonable level of wellness, albeit one for which I expect to have to continue to have to take meds, maybe continue in counselling (my NHS therapy will have long run out), be vigilant and monitor my own feelings and behaviour to try to stay as well as possible. “Self-maintaining” is how a participant described it in one research study I took part in.
This might mean services gently bowing out. I know it’s silly to to say that when I’ve only just got a CPN coming into the picture, but I don’t want to have to have one forever. I don’t mind periodic monitoring visits to my consultant although part of my dream does remain being discharged from secondary care.
But choices, choices, I want some choices about what care I receive, what work I do, what I do outside of my work life. And these are choices which those of us within the mental health community sometimes forget that blue zone people get to take for granted. I’d certainly forgotten about them. Don’t like your job? Get another one, go back to your old career, brush up your CV and off you go. Bored with your social activities? Just give something new a try, go somewhere you’ve never been, meet new friends.
I don’t know if/when/how I can get to the green zone. For now I’ve got to concentrate on consolidating my moves back into the orange zone, sorting out the troublesome insomnia, checking out what life is like without an antipsychotic, edging towards paid work (I have a couple of unpaid bits as practice but I’m still on sick leave). So no running before I can walk. But one day I hope to run off into the wide green horizon. I hope that can be a reality.