‘Safety in self-knowledge’ may seem like a strange title for a blog post, so perhaps a bit of an explanation is needed. I’m writing about this subject feeling like a bit of a hypocrite because:
- I definitely DO NOT have it all figured out, and
- If I hadn’t had to learn this lesson the hard way then I wouldn’t even be writing this post today.
So obvious when it’s too late
Things are always so much easier to figure out the hard way (if that makes any sense?) . What I mean to say is that we’re often so unwilling to trust our own instincts/the people closest to us, especially if it means swallowing our pride and admitting that we are in the wrong.
I have been through so many scrapes and setbacks as a result of not being aware enough of my mental illness and the impact that it has on me, but actually, I’ve probably put myself in worse situations because I didn’t know myself better. And by myself I mean Caroline without mental ill health, as well as with it.
In recent months I have put myself on the line more than I have throughout the past ten years. In fact, probably for far longer than the past few months. This lack of knowledge about who I am and what I want, almost cost me the love of my life, as well as actually costing me this year’s place at university, a mental breakdown, and a great deal of danger.
Thankfully I came to my senses with a real crash to earth and eventually asked for help from the right people, was honest with myself and others, and put steps in place to hopefully keep myself a lot safer in future.
Recently I returned to a handout that I was asked to fill in by Occupational Therapy before I left hospital recently. One of the questions really jumped out at me. It was all about knowing my ‘baseline’, basically what I am like when I am well and I, (a bit slowly) recognised that if I know inside-out the person who I am when I am well, I’m less likely to get as ill (because I will be quicker to spot when I am not well), as well as being less willing in future to allow others to impact me as negatively as they have in recent months.
This post is part of a three-part-series with the next two posts to follow in the next few days explaining more about what a ‘baseline’ is and how to figure out your own baseline. I hope you find them useful and I’d love to hear what you think, either in the comments section below or, for an even faster response usually, my Twitter @spursbythebeach. I look forward to hearing your thoughts on this.
If you need more intensive support then please contact someone, whether it’s your GP, local mental health team, or the Samaritans. Their number in the UK is 08457 90 90 90 or in the Republic of Ireland 116 123. If you would like me to include a helpline from further afield then please contact me. I’m in the process of revamping the blogs (I also blog on fashion, beauty and lifestyle at lifelovesandlipgloss.wordpress.com) and I am hoping to include a useful contacts section in the new website. I’m sorry it’s taken me so long to start posting again and thank you to my loyal readers for sticking with me and welcome to any new readers! Look forward to hearing from you 🙂
Write a letter to a person you are angry with. Say everything you are feeling and wish you had the nerve to say.
Dear David Cameron,
Thank you for helping to make my life even more of a misery than it already was.
First of all, your cuts to social care services make getting the help I need, near impossible. You make getting help from physical disabilities teams as well as Community Mental Health Teams, almost impossible. It has become a complete postcode lottery.
When it works
In some places, having a mental illness, full stop, means that you can get the help you need, especially without having to become a psychiatric hospital inpatient.
On the two occasions I’ve returned briefly to London, I’ve found good preventative measures in place that are simply non-existent in Wales. Ideas like the south-west London recovery college, this runs courses on better management of your mental health condition, as well as more therapeutic classes such as how to tell your story and journalling for self-expression (see my previous post) https://brokenglassshimmers.wordpress.com/2015/02/01/mental-health-recovery-idea-journalling-for-self-expression-day/ .
In Islington they have come up with the fantastic idea of having crisis houses, which people in mental health crisis can move to for a couple of weeks, as an alternative to going to hospital.
The only issue with these crisis houses are that the buildings that house them are rarely disabled accessible, which in reality, with the increasing number of disabled people, the likelihood of them experiencing both physical and mental illness has increased, with the two types of disability aggravating each other in a vicious cycle.
Why not UK-wide?
These ideas, although far from perfect, should be learnt from and rolled out on a UK-wide scale, instead of it being the case that getting the right care is dependent on where you live.
Your tightening up of criteria for help from a once great idea, Direct payments, has made life even more challenging for those living with physical and/or mental health conditions. The only thing I am guilty of, is moving out of the area I live in for a couple of months, before returning. As a result of that, I permanently lost my help from the Community Mental Health Team (CMHT) , both care management and Direct Payments, as well as my independence.
A daily struggle
I struggled to pay for my carer from my DLA once I returned, as going without her would probably lead to suicide. Instead of me contributing half the cost of my care and social services meeting the other half, I have had to pay for all of it, as well as the other costs related to my disabilities. The struggle financially as well as mentally, resulted in me ending up in a psychiatric hospital as an inpatient.
Inpatient DLA rules
The really ‘well thought out’ rule of stopping DLA for hospital inpatients once they have been in hospital for 28 days, is another idea that makes no sense to me. Just because someone with a disability/illness is in hospital, doesn’t mean that they can stop having a disability, or stop the additional costs that are involved in having that disability.
I feel especially bad for people who have leased cars, mobility scooters or electric wheelchairs through the Motability scheme. As well as that, what happens to people, like me, informal psychiatric patients who have some remaining freedom, but who rely on a carer to help to keep that freedom a reality?
My carer was the only reason that, till now, I didn’t become institutionalised , and was the difference between me getting off the ward or being stuck here day in, day out. Now I have lost both Direct Payments and my carer as I cannot afford to keep my carer for the moment and I’ve ended up losing her to someone who can afford her.
Problems piling up
I am absolutely heartbroken. In hospital I have been threatened and scared, despite the efforts of some of the few kind, but underpaid and overstretched nurses, I feel afraid and alone, that I am an easy target, and that this could cost me my life.
You may wonder why that is? Well add financial pressure, to loss of mobility and independence, on top of physical disability, mental illness and isolation. With all of that piled on me, whilst being expected to survive on my own, is it any wonder that I struggle?
My only friends are either completely lost as to understanding what I’m going through, or they themselves are in the mental health system and struggle to deal with my issues on top of their own. My carer was the only one who didn’t find me too much for her and now I’ve lost her. I’m so broke that I can’t even afford to visit my family, including my newborn niece.
Walk in my shoes
Just for a minute, take a walk in my shoes. Pain, fatigue, a constant desire to harm yourself, isolation, loss and an unstable mood. I feel powerless over my own life and what happens to me, which is a scary place to be. You have power over the lives of others as well as your own life. You have the power to change my life.
So next time you talk about the need to reduce mental health stigma, think of the practical things that you are able to put in place to do just that.
My mind returns to a few months ago, when I had a life, ambition, was closer to my loved ones, had a suitable place to live and was far less isolated. If I hadn’t been wrongly advised by DWP and majorly let down by your government, I might actually be in a better position to cope right now, instead of in a room on a psychiatric ward.
Whether or not I make it, as I have lost faith that anyone can, or will, be able to help me, I want you to really think about what you are doing. I want you to consider the destruction you are causing and the lives that are being lost as a result of your cost-saving measures. I’m sure even after you do that, you will return to your cosy life and your cosy family and forget all about us but I want you to spare at least one minute of your time, thinking about what you have done to us.
One recovery strategy that has aided me in the past to improve my mental health is Journalling for self-expression. My task, for at least the next 32 days is to follow the guidance of montrealtherapy.com , Journalling for self-expression tasks .
Each day I will attempt to complete, and post, my target for the day. Others are welcome to join me in this . If you do , post your links or write your thoughts in the comments section below.
This task stemmed from courses I attended at South-west London ‘s recovery college. These were aimed at Journalling for self-expression and telling your story, both of which helped me to open up better, which probably led to me writing this blog.
The first task is to write down what happened that day and how you felt about it (my entry is actually about Wednesday, although I will try to stay more up-to-date in future). I wrote as much as I could remember about a 24 hour timeframe .
I think I woke up pretty early on Wednesday . After a cup of tea, I did some preparation for a blog post but mainly ended up chatting to other people on the ward. The downside of being a blogger in a psychiatric hospital, is that it’s so easy to get involved in other people’s problems/dramas, to procrastinate and never get anything done. To fight against that, and because my body seems to be most active at that time, I’ve been waking up early and trying to get my writing done in the fairly quiet hours on the ward.
9am came around before I knew it and my advocate had arrived. The wheels are in motion for me to have a meeting on the ward of all the professionals trying / trying not to be , involved in my care. This will include the hospital team, my physical disabilities social worker, the CMHT (Community Mental Health Team) and the crisis team.
After that I managed, in a long, tedious, drawn-out, painful process, to get ready for the rest of the day ahead.
What a mess
After this, all I could think about was my partner and helping him out of the financial mess he’s got into in prison, despite the fact that I knew I’d be broke , with big bills due out and my DLA being stopped and overpaid due to the 28 day hospital admission rule not being explained very well by the ward on arrival.. Part of me was also worried about being moved to another ward for a period of time. I know that my mood is currently unstable and I didn’t want it destabilised further by constantly moving between wards.
The great escape
It crossed my mind to do a runner from hospital and go to stay with my mum in London (as you can see, I don’t always think things through with complete clarity). My mum refused to let me stay with her which distressed me further so I got even more distressed. I told the nurse I then went to speak to, that if they wanted to move me wards , they would have to do it forcibly. The nurse was taken aback as I’m usually easygoing, and tried to reassure me, but I was having none of it.
I felt backed into a corner with the quicksand of a mixed episode /rapid cycling deepening and deepening. I was especially concerned about seeing a woman I’d previously been friends with.
After that I called my carer to ask if she could come in early for her last proper day, as I’ve had to let her go, at least temporarily . I was so on edge, I just felt like I was going stir-crazy in the hospital and it made me realise how bad I was going to feel, and how isolated I was going to be in future, without her.
A fixable mistake?
Just before my carer arrived, I had a phone call from my tenancy support worker about my rent arrears. It looks like there has been a mistake with the demand and it is being looked into. I still feel fretful about it but the tenancy support worker has insisted that she has not given up and will be looking into it.
My carer then arrived and we went to sort out the financial stuff that needed doing. This included a problem that had been causing me a great deal of worry.
I went for brunch after a bit of window shopping which ended up delaying me further so I had to rush the meal to get to my friends’ house as they had written me a supporting statement for my PIP assessment form.
What they really think
When I read the statements the ward manger, my carer and friends had written, it made me recognise a few things. Firstly, how much of a trigger my family are to me, secondly, how little independence I have, thirdly, how worried others are about me and lastly, how much I rely on help from other people. This caused me even more anxiety about losing my carer.
We went back to the flat as I was expecting the OT (Occupational Therapist) to visit, furniture to be delivered and to fill in the PIP assessment form with my carer. Nothing got done and I ended up taking diazepam that I had left over from an old prescription, something that, as a hospital inpatient, I am not allowed to do.
I needed to get out and followed my usual pattern of being mixed (depressed and on edge) and overspending money that I really don’t have. I went to Hobbycraft, which is always dangerous for me. In the end I bought some scrapbooking stuff, another book to attempt to organise my chaotic life in, in a pretty way.
I then spent more in M & S getting food treats for me and one of the other girls on the ward.
After that was my last drive back with my carer which made me feel really lost and hopeless.
An old friend
I got back and one of my friends had sent me her number via Facebook and we talked. It turned out that she was depressed and what I said about needing to seek help seemed to have little impact. I pleaded with her to contact the hospital and she said that she would. Not long afterwards I received a text message saying that she had taken a serious overdose. I met her recently in hospital and I don’t have her home address , so, out of my mind with worry, I had to inform the ward staff. They tried to reassure me that they’d called the police and it was ‘in hand’.
After this I deteriorated for most of the evening, I felt really depressed and on edge with the occasional glimmer of ok when friends were able to distract/comfort me, which would then leave me feeling guilty. It didn’t help that I had pain in the opposite arm to the one I have suspected nerve damage in.
What a start to the day
The next day started badly and I ended up experiencing a stabbing pain in my knee while I waited impatiently to see the doctor. The pain didn’t last long but it scared me because of the amount of pain meds I’m already on and how bad the pain was.
When I saw the doctors ( I ended up seeing two) , they said that they didn’t see any evidence of obvious inflammation, this made me feel like they didn’t believe me, although they disagreed. They just told me that the rheumatologist needs to see me. This would be all well and good if I’d been able to visit my flat sooner and received the letter from him in time to get to my appointment, which was due yesterday.
I felt so angry, frustrated and hopeless. This really led to me feeling suicidal. My mood drops so quickly lately that it’s frightening.
A bad combination
It was so hard, with a combination of disturbing memories, stress in the present and fear of the future. There was so much that I longed to do but my belief was so strong that I felt that I couldn’t do it anymore. I try my best to keep on keeping on but it is so hard at the moment. My blogs are kind of safety factors as there is so much that I want to do with them. I just need to believe that I can do it.
My overriding mood for that 24 hours was exhaustion/fatigue whilst being extremely on edge. I’m so scared about how I’m going to cope. I have so many things in my life that need to be sorted out, I just can’t focus on anything in particular and I worry that I will never be able to.
Fearing the future
I’m afraid of isolation, of my pain and mobility levels getting worse, and that despite my efforts, my mental health will continue to become more and more unstable, with mood swings that will lead to me spending more and more time in hospital .
I’m sorry that this has been such a long, overly negative post. I’m not even sure if I will post it.
The phone call
My partner called. He tried to convince me that I need to ask for help more often. He also told me to think about who my friends are, because although people aren’t mind readers and have their own problems, it’s obvious to everyone, especially those who know me, what my difficulties are.
Is anyone else struggling to deal with having a physical disability and/or a mental illness? I feel so alone right now, it would help a lot to know if there are others like me and how they cope. Thanks for listening.
As most of you will already know, my partner is serving an IPP sentence and is two years over tariff with his next parole hearing not even scheduled yet (we’re hoping the end of this year, August would be a miracle). In my posts ‘Life spent loving someone behind bars’ https://brokenglassshimmers.wordpress.com/2014/01/27/life-spent-loving-someone-behind-bars/ and My experience of IPP sentencing https://brokenglassshimmers.wordpress.com/2014/03/31/my-experience-of-ipp-sentencing/ I discuss how my partner’s IPP sentence is a sentence for both of us and we both live under a cloud without even a definite release date at some point in the distance to keep us hopeful.
In a Guardian article from 14th March 2014, http://www.theguardian.com/law/2014/mar/14/grayling-injustice-imprisonment-for-public-protection-prisoners-blunkett , Joshua Rozenberg reports on an interview David Blunkett had with BBC’s Newsnight programme in which, when asked about IPP admitted:
“We certainly got the implementation wrong…The consequence of bringing that Act [his Criminal Justice Act 2003] …in has led, in some cases, to an injustice and I regret that,”
The Guardian reported that ‘three of Blunkett’s implementation errors were outlined by Lord Lloyd, a retired law Lord, in a speech to the Bingham Centre for the Rule of Law…The first was that offences did not have to be very serious to trigger an IPP, they included what Lloyd described as “run-of-the-mill” crimes such as burglary, robbery or arson’. This was the case with my partner and many on IPP sentences. They would probably have been out quicker if they’d have murdered someone.
‘The second problem was that a judge was bound to assume that there was a significant risk of re-offending if the offender had been convicted of one or more such crimes in the past’. What right has anyone to assume that your past will be your future behaviour too? I’m sure many if not most of us have made mistakes in the past that we’re not proud of but luckily for us we’re no longer being judged on them.
‘And the third problem Lloyd identified was that there was no minimum tariff. So an IPP could be awarded for criminal behaviour that was not regarded as very serious at all. Offenders would serve the period they would be expecting for an offence of this nature -two or three years on average, but sometimes much less – and then find themselves still in prison with little prospect of release.’ Hearing horror stories of people serving six years or more over tariff terrifies and sickens me. I wonder how both of us will cope if my partner ends up serving a sentence of that length. You usually somehow find a way through it but at what cost? Most nights I can’t sleep without medication to help me to and my partner is becoming depressed too. I just wonder what kind of justice system we have when someone who hasn’t physically hurt anyone is still locked away nearly 8 years after his crime purely on the basis that he ‘might’ re-offend.
The Guardian also rightly says that since IPPs were repealed and can no longer be passed:
‘If anything that makes things worse for prisoners still serving IPPs. If they had been sentenced after December 2012…they could look forward to serving their time and being released. The same would apply if they had been convicted before April 2005…But what about those caught in the middle? At the end of last year, there were more than 3,500 IPP prisoners whose tariff expiry date had already passed’.
The Guardian adds ‘Locking up people simply because they may commit crimes in the future has no place in a free society’. I wholeheartedly agree with this statement. IPP sentencing makes me ashamed to be British and also makes me consider very carefully who I will vote for in future as most politicians seem extremely lazy where righting this wrong is concerned.
‘Lord Faulks QC junior minister of the Ministry of Justice said “the release of individual IPP prisoners was a matter for the parole board, which is independent of the prison service”.
I find Lord Faulks’ attitude cowardly and lazy. Just because the Ministry of Justice can’t be bothered to put right a mistake that has gone on for far too long.
‘If he chooses to, Grayling could amend the public protection test in the 1997 Act and let out all IPP prisoners who have served their tariffs…Letting them out now would save not just the cost of 3500 prison places but the cost of pre-release courses and additional costs incurred by the parole board in dealing with an increased workload that has not yet peaked’.
In The Independent of Sunday 13th April 2014 http://www.independent.co.uk/news/uk/crime/indefinite-detention-must-be-ended-argue-campaigners-9256706.html?origin=internalSearch Laura Wilkinson reports:
‘Some refer to it as the waiting game; others call it limbo…Widely recognised as a mistake, the IPP scheme trebled the lifer population overnight and quickly swamped the Parole Board’s ability to cope. The Prison Reform Trust says more than 5000 prisoners are currently serving indeterminate sentences despite the abolition of IPP. By the end of last year, more than two thirds-3561 prisoners-had passed their tariff expiry date, and are waiting to have their cases heard by the Parole Board. Of these 958 were originally given a tariff of less than two years. Experts estimate it will take at lease nine years for the backlog to be cleared’.
Nine more years of waiting without a clear end date fills me with dread. The hardest thing I have ever been through is waiting for my partner in prison. Yes I have a choice, I could walk away but you can’t choose who you love and he means the world to me. To be apart from him when I am already physically and mentally ill is just worsening existing problems.
‘Lord Wigley, who has campaigned against IPP sentences said: “They have no idea of how many years they will remain incarcerated. It is hardly surprising that as many as 24 people on IPP sentences have committed suicide while in custody. It is easy to understand why many people deem IPPs to be “life sentences via the back door”.
The statistics on suicide don’t surprise me. IPP makes me feel suicidal and I’m not even the one serving the actual sentence!
In Inside Time’s April 2014 issue Eric McGraw reports: http://www.insidetime.org/articleview.asp?a=1723&c=ipp_sentence_unjust_and_stupid
‘Crispin Blunt, the former Conservative Prisons minister, who worked under Kenneth Clarke to abolish the IPP two years ago, told BBC newsnight on March 13th this year [the same Newsnight that interviewed David Blunkett, mentioned above] that the Act was “both unjust and stupid”. He added “There were 6,500 of these prisoners when I became the Prisons Minister, with 3000 beyond tariff, and the Parole Board were releasing one in twenty of those who applied for release. So the system was simply filling up”.
With odds like this, no wonder some IPP prisoners feel suicidal.
A Guardian article I read today dated Sunday 19th January 2014 by Denis Campbell says:
‘Fewer than half of the patients who sought NHS help last year for anxiety and depression received any treatment, an official report into the government’s “talking therapies” programme reveals’.
Although the study is based on English patients, I believe that this is a UK-wide problem. It is also a personal problem. I have been on the waiting list for counselling since December 2011, for any kind of therapy. As someone with a diagnosis of both Bipolar disorder and Borderline personality disorder, group therapy is recommended for my recovery, specifically DBT (a mixture of mindfulness and Cognitive Behavioural therapy).
In my area, the funding for DBT run out after just one course of DBT therapy had been organised. I was advised last year though, that I had been referred to group therapy, to start early this year. I am incredibly concerned that this will involve another two year wait before I finally get the help that I need. Meanwhile, I am pumped full of ever increasing combinations of medication without any attempt to help me therapeutically as a first option.
I am left with no confidence, struggling to express myself amidst increasingly faster switches between highs and lows. This leaves me feeling frustrated, hopeless and despairing. I would like to return to work one day, but while I am not in control of my mood swings, this is far from likely. This brings my mood further down as I feel like I have nothing to aim for as well as leading to suicidal thoughts and calls to my social worker, the CMHT, crisis team or the Samaritans. These suicidal thoughts have been acted on in the past and my fear is that they will be acted on again, without the help that I so desperately need.
At the moment I am continuing to fight for the help that I need, but I can understand how the many people who are drained enough from fighting mental illness, may give up the fight.