Asylum adventures, and memories and needs today

Today Gabi and I went for a walk on paths around the former, now mostly demolished, asylum at Storthes Hall, Huddersfield. It set off my thoughts anew about the life of the asylums. Before most of the meds we are offered today, and before they became a dumping ground for those who were 'morally' suspect but mentally well (the woman pregnant outside marriage for example) - the architects designed for health and hope.   Today where they are still in use the buildings have declined and represent a different time. But when they were shiny and new the asylums were in the country, wards designed for light and air, to be self sufficient with farms and their own laundries etc. Free labour or Occupational Therapy? Grand halls for celebrations, balls, and meals.

The straight jacket and the padded cell offered ways to stop a patient hurting themselves - and were miles ahead of the previous chaining to a wall. It could be argued that today's medication is used as a drug based straight jacket, and not so far away from the past when times are desperate and someone needs to be kept safe.

All these reflections prompted me to pull out the information I got from local archive services in Surrey about the asylum my great grandfather worked for. He started in the epileptic colony in Epsom. I assume that without the meds now available that people had uncontrolled fits, and
increasing damage to the brain, but they were noted as different to the other patient groups. My great grandfather worked there before the First World War and returned to it after his war service. In time it became a space that accepted voluntary patients with hope of recovery (a novel idea previously) early users of talking therapies, then later became a home for those with learning disabilities.

Looking through that information again I noted a comment that 'From 1918 - Jan 1927 the institution served as a war hospital and treatment for neurasthenic ex-servicemen and administered by the Ministry of Pensions'. I don't remember looking it up before but was curious about what 'neurasthenic' meant.   Google replied with -

Definition of neurasthenia

1. :  a condition that is characterized especially by physical and mental exhaustion usually with accompanying symptoms (such as headache and irritability), is of unknown cause but is often associated with depression or emotional stress, and is sometimes considered similar to or identical with chronic fatigue syndrome

I found that fascinating - that back then they had a name for something that looked like Chronic Fatigue Syndrome or ME, and ex soldiers were prone to it. ME was also linked to 'Gulf War Syndrome' as soldiers returning struggled with it. Labels of things that aren't understood are very woolly, and neurasthenic might include some expressions of what today we would consider Post Traumatic Stress Disorder (PTSD).

Whatever it described I am left pondering the possibility of my great grandfather working with those having CFS as I have experienced, and as the hospital went from epileptic colony to general mental health, maybe with those with bipolar (or manic depressive as it used to be known).   Probably just imaginative thinking, but within possibility. He reached the rank of chief charge nurse.

Today mental health services are too often effectively 'flounder in the community' rather than the dream of 'care in the community' that was plugged when the big hospitals closed.  The mass institution is outdated, and the wider population needs to know us not be protected from us, but the replacement is underfunded and leaves people being abandoned in crisis because the beds are not there when needed, and all the services designed to intervene before crisis are simply not there.

We may frown on the victorian ways of responding to poor mental health and the decades following, but in the asylums there was a massive investment in care, a vision to improve from the workhouses and chaining up, a vision of country air, and meaningful occupation.

We need vision and investment again. instead we get a few dregs...

Ill enough yet not as ill as....

No-one wants to have the worst form of any illness or condition, yet it can be a strange place to have it enough to interfere with life yet being in a much better situation than those you meet on the support forums.

I had this when I had Chronic Fatigue Syndrome (CFS/ME) my life was drastically limited by the exhaustion that is beyond describing, but because I could still have some life and cope with some activities, because I recovered enough for a steady life, I was considered y some as not really having the condition. Those who were left bedbound and light adverse and facing those who want to dismiss their illness as shirking were very defensive against those who had a form of recovery as they felt it undermined the depths of their experiences, and the burden of 'my friend had... and did.... and all fine now'. To be fair I believe that CFS/ME is a mixed bag of things that have related symptoms and as not understood they get lumped together when different things may be going on.

I have now been diagnosed formally with Bipolar affective disorder. This matches what I recognised when I read about it several years ago. I knew I didn't fit the more extreme form and went through various visits to different psychiatrists (a string of junior psychs who are on rotation so next appt I saw a different one). I was told by one that because I was not sleeping around and/or in deep debt then it couldn't be bipolar, yet the extreme form is not the only form and even then the effects vary massively.

It feels good to have the affirmation of a diagnosis - that what I experience is acknowledged. That is powerful, I still remember the GP visit (after months of chaos and even college arranged therapy) when I came home with the label 'clinically depressed' I was not useless I was unwell.

Yet on the online groups for those with bipolar I am on the mild end of the spectrum, and I feel that I don't belong there as a peer. yet I do live with the implications of my own health and when it falls short. It is a strange place to feel that you don't belong with the very ill but  at the same time don't fit with the healthy either.

Of course I am grateful not to face the darkest places that others face day by day,  but to be ill but not ill enough is a strange middle place where you neither belong in one place or the other. On one level my diagnosis is an affirmation of my struggles to those I work and live with and explains why I am like I am. On the other hand I feel a stranger to the world that others with the diagnosis live with, and the support I yearn for is not there as I am in a better place than many.  It is a strange place falling between two stools.

'A rose by any other name' - receiving a Label, and having a plan

I remember my English teacher Mrs Storey (yes that was her real name, destined for that job?) when we were doing various bits of Shakespeare. And yes Romeo and Juliet was one of those we looked at 'A rose by any other name would smell as sweet' - you are who you are regardless of the name that you carry, yet for them the names got in the way.  For others though names can be affirming, recognising something important to them.

Mental Health labels can get in the way for some - and they rightly protest that they are more than the label, more than the diagnosis. Yet for some of us the label can become a positive, something life affirming, that describes what we know and shows that someone has finally heard us and acknowledged it too.

At the end of last year I finally had a psychiatrist who listened to my history and took meaningful questions. He said that he felt bipolar explained my experiences - more depressions but with significant times of feeling full of potential and ideas but in a driven, must act now way that is not peaceful, nor productive as the next idea jumps in before following up the one before.  But the psych stopped short of formal diagnosis, as not seen me in that hypomanic state.

My next visit was with a new consultant (having been locums before that) - from that visit and then again a week ago, with notes and some pointed questions, he declared he was confident that I am affected by 'Bipolar Spectrum Disorder'.  Given the vagaries of mental health diagnoses a consultant being 'confident' is about as solid as it comes.

So how do I feel about the label? Relieved to have been heard, to have had not just my experiences but also my own reading and self understanding has been validated.  I can recall the feeling when in the biggest depression crash (at college after a prolonged high period) I finally went to the GP and was told I was in clinical depression. I came back with a strange level of temporary positivity (well compared to where I was) it was not me being a failure as a human being but a valid recognised illness.  This week was not as dramatic but had some of the same sense.

There are consequences of labels though, and I have filled in the form to declare to DVLA as bipolar is one of the notifiable conditions, it should be straightforward as them writing to the psych and him confirming I am safe to drive, and many conditions from types of diabetes to heart conditions have to inform the authorities. But it is a very formal way of embracing a label.

Plans - the consultant I am with is very good at giving a sense of confidence in the plan he has for treatment. He talks confidently about how getting to a certain dose of Quetiapine whilst tweaking the antidepressant should really help me. The hiccup along the way is that increasing the dose of Q has side effects of deep sedation until the body adjusts to it. Hence this post taking days and days, with about 10 hours total sleep and up to the same again in vague grogginess leaves not that much time fully functional.

I am grateful to have supportive people who have helped me look at my diary and how to adapt during this side effect season that could be a couple of months. And I am very aware of the privilege of being in a role that has so much flexibility.

But if you see me looking even more vague than usual then blame the drugs, but we have a plan!!

'Don't Panic Mr Mainwaring'

I am back quite quickly, it turns out that my last post set alarm bells ringing for some of you. I did add the line about being safe to try and avoid such anxiety.

For me, and many (though not all) living with depression, the presence of the mental thoughts about 'not being' and thoughts about how and why that could be is simply part of the normal range of mental activity. We can be surprised that others do not experience life in this way - and so how those of you in that situation read a comment we may post will be very different to how our friends on similar journeys read a post.

Last week I was in a bad place - but not different in kind to normal, more a difference in volume. My post was letting the scream out where it would be heard. Think of it as pressure cooker - I remember Mum cooking the Sunday lunch in one each week and it would suddenly whistle as the pressure reached a certain point. My post was a release of pressure, and the letting out of the scream was in itself the release that allows me to move forward.

The nature of a scream is raw and primeval - and so I realise my language was blunter than when you normally ask how I am when I usually try to filter it, maybe to make me look less mad. So the reality is a shock to you. But looking through previous blogposts I have been open about the range of emotions and struggles of life with depression, and mostly bipolar depression.

There is no one experience of poor mental health, not even one version of depression. This blog is my journey, and my journey of balancing that with life in the church.

I had already called on my support network and from that have had a wonderful person tackle the admin chaos that was one of my overwhelming things.

The beginners running course I was persuaded to sign up to after my parkrunning started this week which is another time out from under the duvet.

So don't panic, I am not in a great place, but a step better than last week,

waving not drowning

I have written a number of blogs over the months - well not written so much as voiced out to myself whilst walking the dog. Then I get home and she wants her dinner and life happens and the world ends up saved from my ruminations.

So what is different today? Well instead of deep and profound insights to issues in the big wide world, or at least round the corner, today is just a vomit of emotion that I need to vent.

Trigger Alert

First of all I need to say I am safe. I am not at risk of acting on these feelings.

When it takes all your energy to surface in the morning, when walking the dog through woodland provokes thoughts about whether a branch would take your weight or be high enough to ....

And I know that doughnuts don't really count as lunch but they fell into my hands at the petrol station.

Yes I turned up at a meeting, yes I went to lead a school assembly, but through it all I craved my duvet and yearned for the oblivion of hiding under it in denial of all responsibilities.

I am 42, an adult, a professional, even told I am good at my role as a minister. I go to national committees and actually feel more functional there than at local meetings where I expect my cover to be blown at any moment.

I live in chaos and clutter - not enough to drown me but enough to add to my sense of failure to be a coping adult. I don't recall happiness only lesser degrees of depression, Even my mad active times are not happy but driven.

This morning we were challenged to think positively and that was highlighted as the small plodding steps. But did they, could they, grasp what it is like when takes all the effort to merely surface each day, and to distract yourself enough from the scream in your head to be able to look functional? Some do I know. Yet still I feel alone, even knowing I am not. Such is the deep fog - a crowd can travel the same path but in isolation from those just two steps away/

I live. As one of those internet meme says 'So far I have a 100% success rate at surviving each day'