I was trying to return to work in a phased approach. I started this process at the end of January 2016 and had to take all of my owed annual leave, as well as planning how I would like to return to work; 25% one month then increasing this to 50%, 75% and then hopefully 100% of contracted hours. My psychiatrist warned me to take it slowly. Recovery in the early stages is precarious and you do feel delicate. Risk of relapse is high and being vigilant of symptoms, stress and fatigue is essential. Ideally you would like to be supported by someone who understands and cares about your well being. The trouble I had was that I was experiencing mixed messages from a variety of directions. My boss didn't speak to me for about 4 weeks. I think he'd been warned not to upset me, so in his wisdom, he avoided me like the plague. The verger wanted to know every detail of my life like a mother hen, and the Cathedral canon who was allocated to oversee me in a "Confidential support" role spoke to me on the phone infrequently but when I saw her face to face was a total God send.
To be honest, I don't think they had any idea of how to handle me. And I tried really hard to do everything right. Thing is you cannot legislate for other peoples unseen agendas, game playing and generally misogyny. I made the mistake of thinking that my fellow colleagues were all on the same page, both with me and each other. I was so far off the mark it's ridiculous. I am no good at living within chaos and under currents. It reminds me of living with my parents when I was 9. I know some people are really solid and can surf the waves and get their head above water. I am not that person and being mentally ill within all of that is a recipe for disaster.
I requested a meeting with my boss and some members of the parochial church council (PCC) to discuss my ideas and concerns about the job. I'd talked this through with wiser counsel, and they supported the idea. I called my boss to get some time slots arranged. This was the Thursday. The following Tuesday my boss told me he'd been to the arch deacon to discuss me and that they felt my meeting was a terrible idea, and that as I was "Failing" he felt that I should have a meeting with the PCC and my boss every week to discuss my work plan, outcomes, forward planning and issues. So me, 5 members of the Church, every Wednesday for 2 hours, had to meet. So there I am, working hard to get back to work slowly on medical recommendation, unsupported, and dealing with my fragile mental health and now I was to be subjected to weekly interrogations.
Light bulb moments. Chrystal clarity. Emancipation. In that first meeting, and what transpires as the only meeting we had, everything made sense. I was allowed to speak first. There is a God. What followed was both shocking and a relief. Turns out my boss had been manipulating the information of the PCC and telling me half truths and lies, and ignoring diocesan policy on supervision practice. Bless the PCC representative that day. He looked genuinely appalled. People can be naive and this includes me. Just because a person is ordained doesn't mean he is compassionate or Honest. Turns out he was self serving, deceitful, power hungry, willing to sacrifice everyone else in order to get his way and a chauvinist. He was also very good at presenting the face of pious submission to those higher up the ladder. I remember thinking if Jesus were to turn up, I wonder what he's make of it all. Now as a caveat, this is only my experience of this person. He may be amazing with other people, but with me he was a class A shitbag.
I prayed. I spoke with wise people. They talked at me! I went to my GP who signed me back off work. I reflected. I resigned. I had spent 4 precious months embattled and pretty much degraded. Enough was enough. The feeling of joyous relief when I popped my resignation note and keys in the post was sublime.
I am fully aware that the world does not have to bend to my will and my illness. The world does not have to constantly pander to my whims and needs or suffer as a result of my inability to show up to work. However, just because I have a mental illness doesn't mean that I am not capable. It doesn't mean I am stupid. It doesn't mean you can treat me unspeakably poorly. I do not have to expose myself to the abuse of others. I have learned so much from this experience. Mostly that my mental health is more important than ever. I cannot be a parent, wife, friend, daughter or sister in Christ if I am permanently ill. Also, that there are lots of people in the world who do not understand mental ill health, or even want to understand mental ill health. This probably won't change, and when I am around that I need to be really selective about my approach. I have to protect myself. I also have to remind myself that I have something to offer the world. That I am acceptable. That I am enough.
Wednesday, 12 October 2016
Monday, 10 October 2016
Visibility - Happy Mental health day!
Today is the day when the world stands up and takes notice. The general populous reads articles, sees adverts and is exposed to the realities of mental ill health. It's meant to be a big mental health love in where everyone hopefully realises that you shouldn't be shit scared of a mentally ill person and it's not contagious. We are not all Michael Myers.
These things for me are a double edged sword. Embracing mental health tends to be like cuddling a hedgehog. It's got the soft, gooey, love me stuff on the inside, but there is a hell of a lot of prickly stuff to get through on the outside that can put you right off. "Life threatening illness" does not spring to people's mind when you talk about mental illness. The amount of times I have sat on the tube and someone has flung themselves under a carriage and people use words like selfish, attention seeker, and waste of space is shocking.
Demystifying mental health is a massive task. It is complex, odd and other worldly. You cannot see it or feel it, so it's really easy to think that someone is making it up or it's not that bad. What amazes me is that people will readily believe in talking to the dead, that tarot cards can predict your future, and that there is relevance in 6 magpies together on the lawn, but mention depression, hearing voices or anxiety and all hell breaks loose. There is some inexplicable hysteria about losing control of your mind, or the perceived fear of being slightly unhinged from reality. People of mental ill health have been demonised for years and the drip, drip, drip of paranoia leaks into your psyche and festers. We are not all murderers hiding in bushes. In 2010-11 635 homicides were recorded in England and Wales. 95% of those murders were committed by individuals who had not been diagnosed with a mental health problem. It's so easy to focus on the perceived weirdo, rather than accept that the other 95% who were doing the murdering were of, "Sound mind". Like your next door neighbour.
So we battle fear. We also battle impatience, dismissiveness, misunderstanding and get patronised and ridiculed quite a bit. I know that the mental health camp is not the only group of people getting this kind of deal. I suppose for now though it is my topic of choice so I am not casting aside other groups who experience similar alienation. It's just that this is my current experience. But in amongst all of that, I do want to be accepted, understood and embraced for the person that I am, with my illness as part of that wholeness. That means exposing myself to you, at the risk of being rejected or gossiped about or avoided. It's not like I'm choosing between two pairs of shoes now is it. Show the real me to you and possible have a nightmare experience. Hide myself in plain site and be living a half truth, colluding with the denial camp and suffering in silence. And the thing is my illness is a part of me, it's not the whole me. There is more going on than just intrusive thoughts, feeling suicidal every now and then or running around like a headless chicken.
Visibility. It's all about visibility. Drag the fears into the light and they wither and die. Just like pouring water on the wicked witch of the west. I have chosen to be visible. I have chosen to embrace my truth and put it all out there. But this isn't just for me. By taking that risk, other people see their truth and are able to feel just that little bit safer about sharing theirs with me or someone else. I have had the huge privilege of being able to listen to other peoples experience, advise them about where to go for help, laugh at the madness we share and generally be a person in solidarity. We can actually save each others lives by letting someone in and seeing who we really are, and bring hope in times of despair.
What might be frightening for you to understand, is a living horror for the person experiencing it. They will be so much more terrified than you and showing compassion and empathy is a cooling salve to someone who has experienced hostility and animosity.
Go gently and confront your fear. You may just save a life with a small act of love.
These things for me are a double edged sword. Embracing mental health tends to be like cuddling a hedgehog. It's got the soft, gooey, love me stuff on the inside, but there is a hell of a lot of prickly stuff to get through on the outside that can put you right off. "Life threatening illness" does not spring to people's mind when you talk about mental illness. The amount of times I have sat on the tube and someone has flung themselves under a carriage and people use words like selfish, attention seeker, and waste of space is shocking.
Demystifying mental health is a massive task. It is complex, odd and other worldly. You cannot see it or feel it, so it's really easy to think that someone is making it up or it's not that bad. What amazes me is that people will readily believe in talking to the dead, that tarot cards can predict your future, and that there is relevance in 6 magpies together on the lawn, but mention depression, hearing voices or anxiety and all hell breaks loose. There is some inexplicable hysteria about losing control of your mind, or the perceived fear of being slightly unhinged from reality. People of mental ill health have been demonised for years and the drip, drip, drip of paranoia leaks into your psyche and festers. We are not all murderers hiding in bushes. In 2010-11 635 homicides were recorded in England and Wales. 95% of those murders were committed by individuals who had not been diagnosed with a mental health problem. It's so easy to focus on the perceived weirdo, rather than accept that the other 95% who were doing the murdering were of, "Sound mind". Like your next door neighbour.
So we battle fear. We also battle impatience, dismissiveness, misunderstanding and get patronised and ridiculed quite a bit. I know that the mental health camp is not the only group of people getting this kind of deal. I suppose for now though it is my topic of choice so I am not casting aside other groups who experience similar alienation. It's just that this is my current experience. But in amongst all of that, I do want to be accepted, understood and embraced for the person that I am, with my illness as part of that wholeness. That means exposing myself to you, at the risk of being rejected or gossiped about or avoided. It's not like I'm choosing between two pairs of shoes now is it. Show the real me to you and possible have a nightmare experience. Hide myself in plain site and be living a half truth, colluding with the denial camp and suffering in silence. And the thing is my illness is a part of me, it's not the whole me. There is more going on than just intrusive thoughts, feeling suicidal every now and then or running around like a headless chicken.
Visibility. It's all about visibility. Drag the fears into the light and they wither and die. Just like pouring water on the wicked witch of the west. I have chosen to be visible. I have chosen to embrace my truth and put it all out there. But this isn't just for me. By taking that risk, other people see their truth and are able to feel just that little bit safer about sharing theirs with me or someone else. I have had the huge privilege of being able to listen to other peoples experience, advise them about where to go for help, laugh at the madness we share and generally be a person in solidarity. We can actually save each others lives by letting someone in and seeing who we really are, and bring hope in times of despair.
What might be frightening for you to understand, is a living horror for the person experiencing it. They will be so much more terrified than you and showing compassion and empathy is a cooling salve to someone who has experienced hostility and animosity.
Go gently and confront your fear. You may just save a life with a small act of love.
Thursday, 6 October 2016
Peaks and troughs - What is a dip and what is a collapse
Everybody experiences ups and downs in their general mood. We are not people on a consistent plateau of happiness; more often it's perhaps like looking out on the Lake District. Overall it seems to be appealing and manageable with some darker valleys and sweeping hills. The wider picture is one of reasonable consistency and can be traversed with relative ease.
Having a mood disorder shifts this paradigm and has to include the foothills of the Alps and sometime the Himalayas. The bell curve of emotional experience is deeper and wider and more inconsistent. And when ill, my emotional antenna is incredibly sensitive and overloaded. Medication, strategies and self care help me to gently ease my mood flux into a more narrow channel, and trying to recognise when the moods are expanding and leaking out into unmanageability is a skill in itself. And again, as it is mostly internal and cerebral, communicating the shifts is complicated. You don't want to worry anybody by alerting them to your shifting frame of mind, but in the same breath you need to let on that things might not be OK. Over the years I have had to understand what is a dip and what is a slippery slope to madness. One way of explaining it is using the analogy of a radio. When well and feeling like ordinary folk, radio 2 is on quietly in the background. Sometimes certain songs or articles of news grab your attention more than others, but generally, it's benign. It isn't distracting and doesn't interfere with your daily functioning. When ill, someone turns the volume up to maximum. Your moods crash in on you like repeated swells, they are almost suffocating and get in the way of doing anything sensible. You also react to people more violently than you normally would as you are experiencing reality in a magnified way.
When Manic, all my boundaries and mood containers disappear. It's like a flood, rampaging over the flats with no regard for person or property. Lots of unbridled thoughts and emotions. It's funny as the urban myth about mania is that you feel ecstatic, euphoric, creative and wonderful. In my limited experience, this isn't actually the full picture. I do get some of that, but that is usually when ascending to the peak of Everest. Coming down the other side is usually all agitation, anger, grandiosity, paranoia, fear, confusion, aggression, despair and then finally a feeling of mental collapse when your brain actually stops running and leaves you feeling like someone put a bullet through your brain. Scrambled eggs head. Also throughout these periods, those thought and feelings I have are not coherent. They are scattered and almost out of order. My brain shatters into a million pieces.
So I have to take mood inventory most days. Living with bipolar is all about balance and measuring yourself on your own scale of manageability. I have had to learn what is within the normal scale of thoughts and feelings and what for me is stepping outside of that. If I am stepping outside of that, how long should I leave it? Will it contract back to the norm, and if it doesn't at what point should I speak to someone, seek help, panic? Also, there are normal mood dips in relation to external circumstances. If something kicks off with the kids at school, feeling angry and upset is a normal reaction. It will probably hang around for a few days. That's what normal people do. I do tend to feel it in a more magnified way as I am super sensitive, but it does pass. I think there was a part of me that hoped one day I wouldn't feel anything uncomfortable and that equalled wellness. That is far from true. I will never be a spiritual guru in a state of near Nirvana. Thankfully I have gained insight during my journey and it helps me to survive the roller coaster. This is also an ongoing work of self, as every new situation presents an opportunity for learning and growth. Things move and change constantly.
So if I seem a little confused, or tell you you that I find this current situation really hard, remember that I am am working hard to keep up with you. I am probably flicking through my book of tips to figure out what I could be doing to make things a little less troubling or tricky. I will catch up eventually if you have the time to wait.
Having a mood disorder shifts this paradigm and has to include the foothills of the Alps and sometime the Himalayas. The bell curve of emotional experience is deeper and wider and more inconsistent. And when ill, my emotional antenna is incredibly sensitive and overloaded. Medication, strategies and self care help me to gently ease my mood flux into a more narrow channel, and trying to recognise when the moods are expanding and leaking out into unmanageability is a skill in itself. And again, as it is mostly internal and cerebral, communicating the shifts is complicated. You don't want to worry anybody by alerting them to your shifting frame of mind, but in the same breath you need to let on that things might not be OK. Over the years I have had to understand what is a dip and what is a slippery slope to madness. One way of explaining it is using the analogy of a radio. When well and feeling like ordinary folk, radio 2 is on quietly in the background. Sometimes certain songs or articles of news grab your attention more than others, but generally, it's benign. It isn't distracting and doesn't interfere with your daily functioning. When ill, someone turns the volume up to maximum. Your moods crash in on you like repeated swells, they are almost suffocating and get in the way of doing anything sensible. You also react to people more violently than you normally would as you are experiencing reality in a magnified way.
When Manic, all my boundaries and mood containers disappear. It's like a flood, rampaging over the flats with no regard for person or property. Lots of unbridled thoughts and emotions. It's funny as the urban myth about mania is that you feel ecstatic, euphoric, creative and wonderful. In my limited experience, this isn't actually the full picture. I do get some of that, but that is usually when ascending to the peak of Everest. Coming down the other side is usually all agitation, anger, grandiosity, paranoia, fear, confusion, aggression, despair and then finally a feeling of mental collapse when your brain actually stops running and leaves you feeling like someone put a bullet through your brain. Scrambled eggs head. Also throughout these periods, those thought and feelings I have are not coherent. They are scattered and almost out of order. My brain shatters into a million pieces.
So I have to take mood inventory most days. Living with bipolar is all about balance and measuring yourself on your own scale of manageability. I have had to learn what is within the normal scale of thoughts and feelings and what for me is stepping outside of that. If I am stepping outside of that, how long should I leave it? Will it contract back to the norm, and if it doesn't at what point should I speak to someone, seek help, panic? Also, there are normal mood dips in relation to external circumstances. If something kicks off with the kids at school, feeling angry and upset is a normal reaction. It will probably hang around for a few days. That's what normal people do. I do tend to feel it in a more magnified way as I am super sensitive, but it does pass. I think there was a part of me that hoped one day I wouldn't feel anything uncomfortable and that equalled wellness. That is far from true. I will never be a spiritual guru in a state of near Nirvana. Thankfully I have gained insight during my journey and it helps me to survive the roller coaster. This is also an ongoing work of self, as every new situation presents an opportunity for learning and growth. Things move and change constantly.
So if I seem a little confused, or tell you you that I find this current situation really hard, remember that I am am working hard to keep up with you. I am probably flicking through my book of tips to figure out what I could be doing to make things a little less troubling or tricky. I will catch up eventually if you have the time to wait.
Monday, 3 October 2016
Positive states of being
Humility: Being open to every lesson life brings, trusting that our mistakes are often our best teachers. Being thankful for our gifts instead of boastful.
Discernment: Applying the wisdom of our intuition to discover what is essential and true, with contemplative vigilance. Clarity of the soul.
Integrity: The state of being whole and undivided.
These three "virtues" have become a talisman against which I measure my behaviour and well being. If I am immersed in these behaviours, even when things become incredibly tough, my inner core is more stable and I feel a degree of freedom from the chains that wish to keep me in bondage. This doesn't mean that I am pious, lacking in humour or never make mistakes; it helps to centre me in a world where I can easily be cast adrift and tempted by the bright lights and illusions of false promises. It stops me getting caught up in people pleasing, fixing myself to fit in with you and wearing masks to adjust to each and every situation in order to feel acceptable.
Apparently some people have self esteem and a strong sense of self and never really have to work on feeling OK in the world. Bizarre I know. I was not one on those fortunate people. For me, not being grounded meant quite a lot of personality floating and uncertainty of how to act and who to be. Did you ever own an activity book where you pop out the woman in her underwear, then turn the pages to pop out further daily outfits to hang off her torso or legs? You'd fold over the little flaps to secure her new roll neck sweater and cords! This is how I used to live my life. Standing semi naked in my undressed cardboard glory was not how I felt comfortable. Throw in a dose of depression and/or mania to make it even more complex and I felt even more dissimilar and unusual than the next person. I needed a huge wardrobe of behaviours and characteristics to camouflage the real me in order to move throughout the community unseen. It's a real contradiction. Being yourself you feel invisible so you try and hide that reality to be seen as a "Normal" person, which actually makes you invisible! Yes, it's a bit abstract and totally irrational. I'm mentally ill remember.
So every day I would open my trunk of living outfits and pop on what was appropriate. Going to work blouse of academic qualifications, skirt of bravado, shoes of the opinions of others and jacket containing pockets of music you might like, I'm OK really and I'll tolerate you for fear of having no friends. Every scenario would be different so going to the pub would be a jumpsuit of fake joy, to my parents a party dress of lies and with men the mask of I'll just be what you say I should be as I really don't have a clue about being in a grown up relationship.
This is a long time ago, but formulating and constructing a coping mechanism and framework for keeping you safe takes a lifetime to undo. I had very little insight and no bench mark of what it meant to be whole, and free, and self accepting and myself. I wasn't well or emotionally bold. At 19 I was not able to say, I love and accept myself the way that I am, and I have a mental illness but it's OK as I can learn to live with it. I know when we are young we are finding out feet but in hindsight I realise I was lagging behind the pack dragging along a brain that wasn't functioning properly either.
So fast forward 25 years. What have I been doing? I've been clearing out my wardrobe. You start off with the big stuff, the really visible behaviours that are toxic for you and others. Out go the winter coats, the bobble hats and scarves. Then you work down a little deeper and find things that are maybe not as obvious but can really trip you up. The G string of shame! Small and insidious but cuts you in half if you wear it too long.So eventually I have to learn to walk around in my emotional birthday suit. I have to embrace my illness and the quirks that it furnishes me with, and trust that if you see me as I am the world won't come to an end. I can be the real me in all situations. Every now and then I might run to the wardrobe and grab a few items usually in moments of fear or anxiety. With me it's most likely to be the handbag of avoidance and purse of sarcasm.
But in order to be well I must be free of the old framework and find a new world view. I need to give myself the permission to be free and to be loved for what and who I am. It banishes the darkness and deceit and "Head traffic of lies". I read a book by Max lucado called, "You are special". You can hear it on you tube if you type it in the search bar. It is a Christian book, but it's message is for those of faith or none. It reminds me of the beauty of being unique, and that I am enough, I am accepted and I am loved.
So I focus on my touchstone virtues, put one foot in front of the other and press on into the new world. Slightly naked, but less afraid.
Saturday, 1 October 2016
Listing the positives
I thought this morning I could write a long list of positives about being mentally ill. It can feel like things are difficult, dark, challenging and joyless at times but you become moulded by your experience and great things do happen as a result. So I am going to list the great things below in a chronological order as far as I can remember. Attitude of gratitude I was told!
Discovering a spiritual way of living that involves much less of ME and much more of YOU
Asking for help is OK
Giving up drink and drugs as a coping mechanism
Giving up smoking as a coping mechanism
Learning that rigorous honesty is actually good for you
Embracing kindness and compassion in relation to others
Being less judgemental
Learning to really listen not just pretend to listen
Accepting that being mentally ill isn't the end of the world, it is just the beginning of a different world
Learning self care and mindfulness
Being unafraid to speak my truth as it might actually help someone else
Mental health is just the same as being a "Normal person" but with certain aspects of my brain volume turned up. Your volume is currently turned down.
It's OK to not be the same as everyone else
Humour is a God send.
Toxic people are dangerous to my well being
Being sensitive is not a handicap
I am able to teach my children about mental illness and foster emotional maturity and communication skills
I am motivated even though it goes on holiday sometimes. I would not have come this far would I if I had none!
Having low self esteem is not a permanent state of being
Intrusive thoughts are not real even though they feel like they are
Everything is temporary. Nothing remains the same. Things always change.
Being the best, having a career, being loaded and being fashionable are not important to me
I don't need to measure myself by you or anyone else, being me is enough
Even though some people are mean and hideous, most people are actually lovely
I cannot change everything in the world, but I can change me and I can help one person at a time
Swearing is actually really useful at times
I have skills, although being kind doesn't necessarily get you a job but never mind!
Taking positive risks and trying new things even though it feels really uncomfortable
Tolerance of other people. It's not their fault, and even if it is, I can still let it go
I accept that I function differently to other people and I can adjust where necessary
It's OK not to have all the answers
Killing myself is not the answer even if my head tells me it is
Live in the now
Being fired in the crucible moulds and develops you. You become something other than you expected but it isn't always a disaster. When I was 18, and I envisaged what life in my 40's would be like, I'm sure this wasn't it. But actually I think that is probably how it ought to be. It is OK to not have a plan or be sure about where you might be going. I am a work in progress, probably more Picasso than Turner, but still a creation. It will be OK.
Discovering a spiritual way of living that involves much less of ME and much more of YOU
Asking for help is OK
Giving up drink and drugs as a coping mechanism
Giving up smoking as a coping mechanism
Learning that rigorous honesty is actually good for you
Embracing kindness and compassion in relation to others
Being less judgemental
Learning to really listen not just pretend to listen
Accepting that being mentally ill isn't the end of the world, it is just the beginning of a different world
Learning self care and mindfulness
Being unafraid to speak my truth as it might actually help someone else
Mental health is just the same as being a "Normal person" but with certain aspects of my brain volume turned up. Your volume is currently turned down.
It's OK to not be the same as everyone else
Humour is a God send.
Toxic people are dangerous to my well being
Being sensitive is not a handicap
I am able to teach my children about mental illness and foster emotional maturity and communication skills
I am motivated even though it goes on holiday sometimes. I would not have come this far would I if I had none!
Having low self esteem is not a permanent state of being
Intrusive thoughts are not real even though they feel like they are
Everything is temporary. Nothing remains the same. Things always change.
Being the best, having a career, being loaded and being fashionable are not important to me
I don't need to measure myself by you or anyone else, being me is enough
Even though some people are mean and hideous, most people are actually lovely
I cannot change everything in the world, but I can change me and I can help one person at a time
Swearing is actually really useful at times
I have skills, although being kind doesn't necessarily get you a job but never mind!
Taking positive risks and trying new things even though it feels really uncomfortable
Tolerance of other people. It's not their fault, and even if it is, I can still let it go
I accept that I function differently to other people and I can adjust where necessary
It's OK not to have all the answers
Killing myself is not the answer even if my head tells me it is
Live in the now
Being fired in the crucible moulds and develops you. You become something other than you expected but it isn't always a disaster. When I was 18, and I envisaged what life in my 40's would be like, I'm sure this wasn't it. But actually I think that is probably how it ought to be. It is OK to not have a plan or be sure about where you might be going. I am a work in progress, probably more Picasso than Turner, but still a creation. It will be OK.
Friday, 30 September 2016
So, what would you do? (Think I might be channelling anger!)
So if you or a love one were mentally ill, what would you do?
Coming into the mental health system is scary. I think most of us have an image in our head that involves straight jackets, liquid cosh (Massive dose of fast acting sedatives administered to knock people out in crisis who are dangerous) and padded cells; the thought of being incarcerated against our will with the entire world misunderstanding us and that we'll never be free again. In rare circumstances this does happen, and if you read the history of the treatment of the mentally ill it does make for frightening reading. I still find it amazing that "hysterical" women in Victorian England were treated with orgasm machines as it was felt sexual frustration made them neurotic. Couple that with the odd demon possession case, witchcraft accusations and experiments with hallucinogenics we're all set for joyous sanity!
Moving on. In my life time "Care in the community" has come into being, which involves trying as much as possible to deal with people's care outside of a hospital setting. The dawning realisation that sufferers need the comforts and safety of their home, to have as much normality as possible and a sense of control of their treatment is paramount. There will always be a need for a secure environment for those persons who are too ill to be safe to themselves of others and that is appropriate. I lived really near to Broadmoor when I was a kid, and the 10am siren used to scare the living daylights out of us every Monday morning. We'd wait in terror for the second siren to go off which confirmed it was the regular test and not an escapee. The imagination can run totally wild if left unchecked! And for me when I was diagnosed, I already understood the distinctions and nuances of mental illnesses, treatment interventions and levels of care required. I've worked with severely mentally ill people before I had my diagnosis so in some ways, I feel very lucky that I had that insight. If you are coming into it totally fresh, the whole thing is baffling. It's also terrifying. Go to Mind.org.uk for LOADS of really good info.
Being mentally ill is hard work. Couple that with the modern choice based empowerment regime regarding treatment, it can be a recipe for disaster. It's like asking someone with a compound leg fracture if they a) Recognise they have a broken leg, b) Would they like it treated? c) Would you like to treat it yourself as I cannot force you to have it treated by me unless you are putting yourself or someone else at huge risk of harm? d) If you do want to walk around with your bone hanging out that's fine, I cannot do much about that as although you seem really unwell, you appear to still have some capacity to make choices, therefore, I cannot intervene, e) If it get to the point of gangrene and you might die and become delirious and detached from reality, we'll have a very lengthy discussion about you and possibly put you in hospital against your will for 2 days 100 miles from your house and decided whether or not to do something! Obviously this is a worse case scenario example, but this stuff can happen.
It's funny. If someone has diabetes, and you tell them a daily injection regime will save their life, they'll do it without thinking. It appears clear as Chrystal that they have a life threatening condition. With Bi-polar, also recognised as a life threatening condition, mention medication and all hell breaks loose. "I don't want to take a pill every day and be chained to pharmaceuticals for the rest of my life." "I can get well on my own", "I'm not really that ill or unmanageable", "I won't kill myself. "
There were 6,708 suicides in the UK and ROI in 2013. That is 18 people a day for a year. It's also getting worse. (http://www.samaritans.org/sites/default/files/kcfinder/branches/branch-96/files/Suicide_statistics_report_2015.pdf)
The stigma attached to mental ill health is staggering and it cripples a sufferers willingness to accept their condition and get help. Society lacks compassion and understanding, therefore treats sufferers with fear and discrimination. Services are underfunded, understaffed and continuously overlooked by other agendas, that in my humble opinion, are less important. Quite frankly it's a big mess. My own local CQC report on our mental health provision makes pretty grim reading.
So when they told me I would need to be in secondary care mental health services for a few years my heart more than sank. In my 8 years so far, I have seen at least 5 different psychiatrists in the community, waited 18 months for a course in CBT and a further 18 months to see a CPN for couples support in dealing with living with my condition. I have been turned down for psychotherapy as my condition is too unstable and even if I did get put forward for it, the wait is 2 years. I'm too ill for normal counselling (Talking therapy) but also, as I function quite well I am not entitled to a CPN to see me regularly to make sure I'm OK. I see my psychiatrist once every 4-6 months, and when I go to book myself in after my appointment, they look in the calendar and say, "Sorry the clinic is full on that day, can we contact you by post when an appointment becomes free?"
I live in a first world country with a free health system. I live with an enlightened generation of people as far as mental health understanding goes. There is provision of care available for people like me, but it is so far from perfect it's scary. I am blessed in that I have insight, I can read and have access to a computer, I have a loving family and support network around me. I am also able to thrash out what I think works for me and what doesn't. I know for a fact that 25 years ago when I first became ill, undiagnosed and nutty as a fruit cake I was in real trouble. I was "Hidden homeless", unsupported and self medicating with drugs and alcohol. I was surrounded with fear and violence, was misunderstood and very afraid. I was totally isolated and had no idea what to do. I tried to take my life twice, and the second time was very nearly successful. I still vividly remember seeing my divorced and estranged parents standing at the end of my bed on the hospital ward looking helpless and afraid. I don't think any of us quite knew what was going on or what to do.
It took a little while, but I realised on some deep level that noone was actually going to help me, and that I had to drag my own sorry arse out of the mire an into the world of the well. I'm one of the lucky ones. Think about those 6,708 people that weren't as lucky. Think about their families and children then next time you look away from at that odd bloke or dishevelled , sad looking women, or moan that someone threw themselves under the tube. None of us are exempt from a mind bending, weird out episode. It doesn't take much I promise you. And if they do try and get help, what awaits them is complex and challenging and can be a massive disappointment.
So if it was you or your loved one, what would you do? How might it be?
Coming into the mental health system is scary. I think most of us have an image in our head that involves straight jackets, liquid cosh (Massive dose of fast acting sedatives administered to knock people out in crisis who are dangerous) and padded cells; the thought of being incarcerated against our will with the entire world misunderstanding us and that we'll never be free again. In rare circumstances this does happen, and if you read the history of the treatment of the mentally ill it does make for frightening reading. I still find it amazing that "hysterical" women in Victorian England were treated with orgasm machines as it was felt sexual frustration made them neurotic. Couple that with the odd demon possession case, witchcraft accusations and experiments with hallucinogenics we're all set for joyous sanity!
Moving on. In my life time "Care in the community" has come into being, which involves trying as much as possible to deal with people's care outside of a hospital setting. The dawning realisation that sufferers need the comforts and safety of their home, to have as much normality as possible and a sense of control of their treatment is paramount. There will always be a need for a secure environment for those persons who are too ill to be safe to themselves of others and that is appropriate. I lived really near to Broadmoor when I was a kid, and the 10am siren used to scare the living daylights out of us every Monday morning. We'd wait in terror for the second siren to go off which confirmed it was the regular test and not an escapee. The imagination can run totally wild if left unchecked! And for me when I was diagnosed, I already understood the distinctions and nuances of mental illnesses, treatment interventions and levels of care required. I've worked with severely mentally ill people before I had my diagnosis so in some ways, I feel very lucky that I had that insight. If you are coming into it totally fresh, the whole thing is baffling. It's also terrifying. Go to Mind.org.uk for LOADS of really good info.
Being mentally ill is hard work. Couple that with the modern choice based empowerment regime regarding treatment, it can be a recipe for disaster. It's like asking someone with a compound leg fracture if they a) Recognise they have a broken leg, b) Would they like it treated? c) Would you like to treat it yourself as I cannot force you to have it treated by me unless you are putting yourself or someone else at huge risk of harm? d) If you do want to walk around with your bone hanging out that's fine, I cannot do much about that as although you seem really unwell, you appear to still have some capacity to make choices, therefore, I cannot intervene, e) If it get to the point of gangrene and you might die and become delirious and detached from reality, we'll have a very lengthy discussion about you and possibly put you in hospital against your will for 2 days 100 miles from your house and decided whether or not to do something! Obviously this is a worse case scenario example, but this stuff can happen.
It's funny. If someone has diabetes, and you tell them a daily injection regime will save their life, they'll do it without thinking. It appears clear as Chrystal that they have a life threatening condition. With Bi-polar, also recognised as a life threatening condition, mention medication and all hell breaks loose. "I don't want to take a pill every day and be chained to pharmaceuticals for the rest of my life." "I can get well on my own", "I'm not really that ill or unmanageable", "I won't kill myself. "
There were 6,708 suicides in the UK and ROI in 2013. That is 18 people a day for a year. It's also getting worse. (http://www.samaritans.org/sites/default/files/kcfinder/branches/branch-96/files/Suicide_statistics_report_2015.pdf)
The stigma attached to mental ill health is staggering and it cripples a sufferers willingness to accept their condition and get help. Society lacks compassion and understanding, therefore treats sufferers with fear and discrimination. Services are underfunded, understaffed and continuously overlooked by other agendas, that in my humble opinion, are less important. Quite frankly it's a big mess. My own local CQC report on our mental health provision makes pretty grim reading.
So when they told me I would need to be in secondary care mental health services for a few years my heart more than sank. In my 8 years so far, I have seen at least 5 different psychiatrists in the community, waited 18 months for a course in CBT and a further 18 months to see a CPN for couples support in dealing with living with my condition. I have been turned down for psychotherapy as my condition is too unstable and even if I did get put forward for it, the wait is 2 years. I'm too ill for normal counselling (Talking therapy) but also, as I function quite well I am not entitled to a CPN to see me regularly to make sure I'm OK. I see my psychiatrist once every 4-6 months, and when I go to book myself in after my appointment, they look in the calendar and say, "Sorry the clinic is full on that day, can we contact you by post when an appointment becomes free?"
I live in a first world country with a free health system. I live with an enlightened generation of people as far as mental health understanding goes. There is provision of care available for people like me, but it is so far from perfect it's scary. I am blessed in that I have insight, I can read and have access to a computer, I have a loving family and support network around me. I am also able to thrash out what I think works for me and what doesn't. I know for a fact that 25 years ago when I first became ill, undiagnosed and nutty as a fruit cake I was in real trouble. I was "Hidden homeless", unsupported and self medicating with drugs and alcohol. I was surrounded with fear and violence, was misunderstood and very afraid. I was totally isolated and had no idea what to do. I tried to take my life twice, and the second time was very nearly successful. I still vividly remember seeing my divorced and estranged parents standing at the end of my bed on the hospital ward looking helpless and afraid. I don't think any of us quite knew what was going on or what to do.
It took a little while, but I realised on some deep level that noone was actually going to help me, and that I had to drag my own sorry arse out of the mire an into the world of the well. I'm one of the lucky ones. Think about those 6,708 people that weren't as lucky. Think about their families and children then next time you look away from at that odd bloke or dishevelled , sad looking women, or moan that someone threw themselves under the tube. None of us are exempt from a mind bending, weird out episode. It doesn't take much I promise you. And if they do try and get help, what awaits them is complex and challenging and can be a massive disappointment.
So if it was you or your loved one, what would you do? How might it be?
Tuesday, 27 September 2016
Side effects
So it is all a bit chaotic to say the least. The lithium is definitely working as my mood is changing but I am also experiencing some other side effects. Initially the most obvious is a very apparent tremor. My hands vibrate so much that I look like I am conducting an imaginary orchestra. If I hold a coffee cup in public, I have to place it on the table in front of me and put both of my hands around it. The first bit I have to drink by sipping from the top whilst it's on the table. I cannot risk picking it up as I will make an enormous mess. Once the liquid is a few inches down I can pick it up, but have to be be quick! My sleep is now also all over the place too. I used to sleep like the dead, 9 hours a night flat out and up to 16 hours when very depressed. Now I'm lucky if I get 3 hours in a block. I'm up and down like a yo-yo, and by body feels twitchy. I also go to the loo like it's an Olympic sport. Lithium interferes with urea production in your kidneys. Thing is, as lithium is in salt, and you have to keep your water intake high so as to not dehydrate constantly. So you have to drink loads, and then it makes you pee like a drunk bloke on a Saturday night. I feel like I plan my life around public (In)conveniences. My skin itches, I have low grade nausea, and my mouth is so dry it feels like the bottom of a parrots cage.
To top this off my blood test results show that my thyroid levels are all a dither. Apparently there are three things they measure. The Levels in your gland in your brain that controls the thyroxine thermostat, the actual thyroid gland level, and thyroxine in your Blood. All of them are "Borderline". *imagines lots of miniature Madonna's running around my blood stream* He asks me if I am feeling particularly lethargic, or experiencing any odd symptoms. You mean other than all the other stuff that is going on? He prescribes some propananol until the tremor eases down and says we need to monitor my thyroid regularly. If it tips the wrong way, you guessed it, they can give me a tablet to take to adjust it. He promises me that my tremor will go eventually and that my body is in a period of adjustment. On the upside, coming off of the Depakote has meant my hair is growing back, although it is wavy like corrugated iron and I look like Chrystal tips! Yay for me!
Pharmaceuticals. My ethical head tells me that the large companies create chemical monsters that fuel corporate money gluttons at the expense of incredibly ill people. We take the tablets that make us ill but supposedly make us better. We pay above the odds for them financially and create a cycle of animal cruelty, greed and dependence. I am certain there are more over the counter pill addicts than crack smokers. The flip side of this is that actually, some medicines are miraculous for the lives of people who wouldn't function or survive without them. I always feel conflicted when the arguments pop up on my Facebook timeline with the pro's and cons of corporate pharma versus homeopathy and alternative therapy. I assume there is a place for both particularly if we could take out the dishonesty and lack of transparency with some companies.
But lithium comes form the earth, and although it is not part of the natural mineral requirement for the body, it does work. What I have to decide is whether or not to live with the added physical bonuses of my new prescribed companion, or take the risk of weaning off it and trying something else or nothing at all. I am not suicidal, I am emotionally engaged with the real world, I have energy and motivation for the first time in over a year. Can I adjust accordingly to the side effects and tolerate it's intrusions? How much do I want to be well? I wonder what you would do? Hold that thought.
To top this off my blood test results show that my thyroid levels are all a dither. Apparently there are three things they measure. The Levels in your gland in your brain that controls the thyroxine thermostat, the actual thyroid gland level, and thyroxine in your Blood. All of them are "Borderline". *imagines lots of miniature Madonna's running around my blood stream* He asks me if I am feeling particularly lethargic, or experiencing any odd symptoms. You mean other than all the other stuff that is going on? He prescribes some propananol until the tremor eases down and says we need to monitor my thyroid regularly. If it tips the wrong way, you guessed it, they can give me a tablet to take to adjust it. He promises me that my tremor will go eventually and that my body is in a period of adjustment. On the upside, coming off of the Depakote has meant my hair is growing back, although it is wavy like corrugated iron and I look like Chrystal tips! Yay for me!
Pharmaceuticals. My ethical head tells me that the large companies create chemical monsters that fuel corporate money gluttons at the expense of incredibly ill people. We take the tablets that make us ill but supposedly make us better. We pay above the odds for them financially and create a cycle of animal cruelty, greed and dependence. I am certain there are more over the counter pill addicts than crack smokers. The flip side of this is that actually, some medicines are miraculous for the lives of people who wouldn't function or survive without them. I always feel conflicted when the arguments pop up on my Facebook timeline with the pro's and cons of corporate pharma versus homeopathy and alternative therapy. I assume there is a place for both particularly if we could take out the dishonesty and lack of transparency with some companies.
But lithium comes form the earth, and although it is not part of the natural mineral requirement for the body, it does work. What I have to decide is whether or not to live with the added physical bonuses of my new prescribed companion, or take the risk of weaning off it and trying something else or nothing at all. I am not suicidal, I am emotionally engaged with the real world, I have energy and motivation for the first time in over a year. Can I adjust accordingly to the side effects and tolerate it's intrusions? How much do I want to be well? I wonder what you would do? Hold that thought.
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