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.

Weary

Blogs are like buses - two come together!

Today I am admitting my wobbles over the past couple of weeks. I live with the shadow of chronic fatigue as well as depression. Generally I do well on activity levels, as long as I also rest a lot. Lately though I have got more and more fatigued. Despite a few days off I am still needed rest as much as possible through the day. Today I am up and dressed but other days I have dealt with emails, and planned sermons whilst still in bed. And yet I am still awake at 1am - not a good sign.

But then there is the depression - it has not come on me heavily but the 2 conditions feed off each other and I can feel the greyness and wonder how much of the inertia is depression and how much is fatigue. Sometimes it feels very clear which is which - the difference between when my body wants to but can't and when it can but doesn't want to.

I can do quite a few tasks when in this mixture of fidgety mind and weary body - but not the ones that have been piling up on the intray since this patch started.  I have studies to do as part of my role as a probationer minister, I have chosen the subject, and I am positive about getting it done, yet can't get my mind around the actual work.

Do I need to face it down with stubborness? Today I have spent in the room with my books and notes and started to think, but then had brain flop and now feel more frustated than if I had tried - I guess before I could pretend it was just tiredness, but now I know that it is the depressive kind of brain fog.

I am also finding people hard work - not good in a job that is about people! And I have been glad when people haven't been in when I called on them. The social energy is just not there at the moment, not for one to one, or if I need to lead the conversation.

Depression isn't just about those acute days, or the big breakdowns, it can be the invisible lead weight in the midst of otherwise normal life, where it looks fine to others and things are done, but they don't know how much more it cost you. The same goes for those living with constant pain or other invisible 'limps' in life.

And that's all for now, need to rest before a meeting tonight.