The hardest thing…
One of the hardest things about having a mental illness is losing friends. I never really know whether to take it personally or whether it is as a result of my diagnosis and symptoms. All I do know is that as an impact of my conditions (Borderline personality disorder/possible Bipolar), I find it harder to make and maintain friendships than the average person seems to.
Firstly, I’m unpredictable. One minute I’m happy-go-lucky, impulsive and sociable, the next minute I’m isolating myself, paranoid and hostile. I can understand why people would struggle to have patience with that, but it hurts when people promise that they will stick by me then let me down for more ‘fun’ friends.
I was in a psychiatric hospital for about four months. The majority of ‘friends’ were either afraid or unwilling to visit me during that time, especially after the initial week or two. It hurt to watch other patients with their visitors, the lift it usually gave their mood, as my ‘friends’ distanced themselves, even when I was on day leave from hospital.
Perhaps they were worried about what sort of state they would find me in, how traumatic it would be for them to experience.
When it suits them
Then I got out of hospital and, apart from the occasional invite out, when it suits them to have me around -events they are going to anyway, etc, I haven’t heard from them.
Whenever I need their help and advice I’m either ignored, given a bunch of excuses and the knowledge that they have better things to do with their lives than deal with me.
I’m trying to move forward with life after hospital, but alone, it is so much harder. I have no-one to call and share with when good things happen, and no-one to turn to when I need a shoulder to cry on.
Without the support I get from readers of this blog and the Twitter community, I would probably have given up by now. So thank you, to my virtual friends.
I haven’t posted on a regular basis in sometime so I really do appreciate the fact that I have some very loyal, patient readers left. It really has meant so much to know that in my darkest hours, you hadn’t given up on me. That became one of the things that got me fighting again.
It’s been a challenging week so I thought that I’d share with you some of what I’m facing right now. I do this mainly because I wanted to feel less alone and also because I wanted to reach out to others facing issues like these.
If you’d like to continue the conversation after you’ve read this post, you can add a comment or, as I’m always on Twitter, you could add me on @spursbythebeach . I look forward to hearing what you think.
I’ve been refused a care assessment from social services physical disabilities team.
Based on two Occupational Therapy assessments that took place while I was on the psych ward, and, I had been told previously, were being ignored.
Apparently I was refused a care assessment because, firstly, I ‘need to remain as mobile as possible’ despite the fact that I am on crutches and high doses of pain meds due to the agonising pain I am in, on a near-constant basis in my back and knees.
Secondly, I ‘didn’t ask for help’ that is because help was never offered to me and most of the time I was too embarrassed/proud/scared to ask as a 29 year old woman. I think this is probably the same at any age.
Thirdly, the borough in London that I spent the summer in, arranged an assessment with a social worker who, after investigating my medical evidence and really listening to what I had to say about my care needs, had daily carers put in place within the week. Why then if my physical health has worsened since then, is the same not being done in Wales?
I actually had a chance to confront one of the OT’s who made this judgement today and he just said we will have a ‘longer chat’ when he drops some equipment off to the house next week and mentioned that I could speak to advocacy about appealing the decision and that’s now top of my list to do. I just think that receiving the right care shouldn’t be a postcode lottery.
Another thing on my mind is my PIP assessment fast approaching. It’s a real worry as at the moment I am getting myself into masses of debt while my DLA has been stopped since I’ve been in hospital, as I’ve had to pay for a carer privately with no help from social services at all so far. This along with still waiting for my new care manager to visit, is causing me a great deal of worry and stress.
I know I have a lot to lose with this PIP assessment so I had a good chat with the two amazing people who run the NASS helpline and became a member. I also rang my rheumatologist and he has brought forward an appointment that was due on April 1st to next Wednesday. I’m just really desperate for him to do something to help me and find out exactly what is going on wiith my body.
I am still on my first week of leave from hospital and I have yet to be officially discharged although hopefully I will be as of Monday next week.
This has probably been the most challenging week of my life.
I got out of hospital and really hoped that things could go back to the way they were before with my friends. In most cases there is too much history there now, I’ve been too much of a let-down. As a result I feel lost. Either they don’t believe that I will ever fully recover (perhaps I won’t) or I’ve put them through too much during the past few months and they can no longer get past it.
Some people have stuck by me, the main ones being my carer, my best friend who lives in Sweden and my sister, who I’m beginning to build bridges with.
There are a couple of others who are feeling worried since my recent issues with paranoia, which is a vicious circle, as this was probably brought on by the stress brought on by loneliness and isolation.
Leaving a psych ward can be one of the loneliest times that you will ever face. You go from being around lots of people – staff and patients – 24 hours a day, to all of a sudden spending long periods of time by yourself.
I’ve decided to invest in a small TV but I’m just hoping that it doesn’t distract me too much from my blogging. I really feel like the only place that I can feel safe to say what’s really on my mind, and to generally be understood, is this blog.
Aside from the loneliness of leaving hospital, I’ve had to try to start again in a flat that I’ve hardly lived in which is still very chaotic as I need to finish unpacking, get into some kind of routine and start doing the things that I love again like reading and blogging.
I’ve just upgraded the blog and I’m quite pleased already. I’m always open to feedback and suggestions and would appreciate any constructive criticism anyone could offer me.
I want to start moving forward and looking to the future I’m just not sure how to go about it. I really want this blog to become a more positive place but most of all it has to be an honest place which means that I may not achieve positivity all the time.
I’ve spent some time recently considering how I want to move forwards with the blog and this year I want to really fight to raise more awareness, lessen feelings of isolation, and offer an alternative to mental health stigma and ignorance. I’m hoping that this blog can become a place where people feel they will be understood, and that raises issues that concern both myself and the readers of this blog, so that more people will know of the struggles faced by those with mental illness and/or physical disability, exactly how hard we have to fight.
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.
What follows are extracts from a letter I wrote to someone while I was in my third week of hospital admission in a psychiatric ward. This was a real turning point for me and by writing it I came to realise a few things…
‘…My memories of you and thoughts of you are what keep me fighting harder and harder every day…And I’ve realised, although it’s taken me a stupidly long time to realise, that if I die then I will lose you, so even considering dying is stupid because I CAN’T lose you.
Writing this has made me more aware of how much I need to get better and has finally sorted out my head. I think I’m ready to start thinking about leaving hospital.
…I just need to think carefully about how I’m going to stay in this frame of mind, put stuff in place so that I can leave hospital without coming back. I don’t ever want you to go through this worry again.
It doesn’t mean that I’ll ever be completely cured but I’m not spending my life in hospital waiting for that day to come when I could be out in the real world, living my life…
…I’m not going to go to supported accommodation either. I’ve thought about it and even if it means losing support and having to go back to my temporary accommodation, I need my own space.
The only thing keeping me here now is pain management but I’m going to speak to the doctor asap to ask what can be done about that if I go home on Monday or Thursday at the latest (hopefully). I’m a voluntary patient so as long as I can prove that I am ready, they’ll be happy to let me go home and I may even show them this letter to fight my case.
I’m going to call a few people, speak to my carer and a member of staff and hopefully I will then have some good news for you…
The past few weeks have been some of the most challenging of my life. I’ve learnt so much about myself, my relationships with others and my battle with mental illness. I’ve pushed myself and many loved ones, to their limits and there were times I (and I’m sure many others) weren’t sure if I was going to make it.
By using the support I’ve received from my partner, family, friends, staff and other patients, I have begun to come out the other side and I now have the smallest shred of hope that I need to hold on to tightly.
The lessons I’ve learned about the impact of self-harm and suicide , have taken many long years of battling mental illness, to accept.
I’ve read so often about the finality of suicide and never really took it in. It won’t just mean an end of physical and mental pain, it means an end of my relationships with the people that I love, an impact on people whose lives I may have touched – even in the smallest of ways, and giving up before I’ve had a chance to see if I can achieve my dreams.
When life is at its bleakest, those lessons are hard to accept and we often delude ourselves, ignore them or fight against the truth. I just hope that this is the beginning of a new attitude towards my life.
For a long time, my life stretched on before me full of fear and negative predictions. The fear hasn’t completely left me and the negative predictions haven’t all gone away. I’m sure there will still be times when I feel frustrated, disappointed and hopeless. The difference is, now I’ve finally admitted to myself that I have a great deal to lose and a lot of hurt to cause, if I give up on life.
The decision about supported accommodation has been given a lot of consideration but I have recognised that although hospital has been beneficial, I don’t want to live my life permanently in that sort of environment.
I also have yet to be assessed by Swansea Community Mental Health Team. This is something that really frustrates me. I feel extremely disappointed in the mental health provision that I have received in the community and that it has taken a hospital admission for me to receive the care that I so desperately need. It worries me a great deal that nothing has been put in place and I’m sure that Swansea CMHT will do everything they can to avoid taking over my care, despite my high level of need.
Despite that, I have now recovered some of my fight and I will not be giving up so easily once I am discharged. I just hope that the fighting pays off.’
That was weeks ago and a lot has happened since for me to fill you in on. I will be trying to update you as soon as possible with the latest going’s on as well as other issues related to having a mental illness and physical disability.
I wanted to share this so that hopefully I can challenge some of the stigma about mental illness and hospitalisation and show that being admitted to a psychiatric ward does not always have to mean the end of the world.
Have any of you been admitted to a psych hospital? If so, what were your experiences and how did you know when you were ready to leave? You can comment below or add me on Twitter @spursbythebeach or email firstname.lastname@example.org .
This week is Responsible Business Week. At the start of this week a report developed by Business in The Community (BITC) in association with Mind, the Work Foundation and the Chartered Institute of Personnel and Development (CIPD); outlines how businesses which prioritise employee wellbeing reap rewards – including improved employee motivation, reduced sickness absence rates, greater staff retention rates and productivity. (Reported by Mind- Mind.org.uk website).
Inside the ‘Mental health:We’re ready to talk’ report, Louise Aston, Workwell director, Business in the Community says:
‘This culture of silence – on an individual and
organisational level – results in suffering, inequality
and discrimination. By not taking simple steps to
discuss mental wellbeing, issues that could otherwise
be resolved simply can soon develop into ill health,
absence and disengagement. Organisations that ignore
the need for preventative action on mental health risk
long term problems, including reduced competitiveness,
lower productivity and fewer prospects for sustainable
growth. Conversely, the rewards for businesses that
engage with this issue are huge. We need to see an
urgency applied by business leaders to help bring
greater momentum to ending stigma and improving
the capacity for positive mental wellbeing.’
I myself experienced this stigma in a number of places of work. The first place that clearly discriminated was a call centre I had worked in for 2 years, when I was diagnosed with Bipolar disorder. After being advised that shorter hours and more set shifts would help to stabilise my condition instead of the constant switch between doing early shifts and late ones. I asked my team leader if it was possible to put this in place, with a letter from my psychiatrist to back up what I was saying.
It was treated as almost a disciplinary procedure and made clear to me how inconvenient I was to them. This helped to destroy my self-esteem and with that and medication side effects to deal with, as well as the condition itself, I soon found myself absent from work, signed off sick. After months of this I eventually came to terms with the fact that I wouldn’t be well enough to come back. During this time I had had no support or encouragement from my workplace and I felt that my 2 years with them had been a complete waste after seeing the lack of respect that they had for me. Eventually I handed in my resignation and got used to a life of unemployment and ill health.
Years later, with no confidence and nothing to aim for, I decided to try again with employment. I was placed in a Future Jobs Fund position, working for a charity, as their volunteer coordinator. I had no previous experience in this role and was given no training and limited support. I informed my employer early on that I had Bipolar disorder and she said that she did not regret employing me, but that was not to last. My increasing workload and pressure from a couple of other colleagues to deliver results when I had no idea what I was doing led to me becoming ill again and thanks to a severe bout of depression I had to leave early from a job that I actually loved.
Years later I returned there and saw that they had actually employed one of the other women who did the Future Jobs Fund with me. (Future jobs fund was a temporary 6 month introduction into the workplace for the disabled or under 25’s and after that trial period it was up to the employer whether or not to keep you on). When I looked at how well she was doing, how settled, secure and happy she was, all I could think was: That could have been me!.
I know that jealousy is unbecoming and I know for a fact this girl had worked incredibly hard to be offered that position but it still broke my heart as I had found my dream job but was too ill to keep it.
What could have helped? Well, some things did already, like flexible working hours and an hour off for lunch. Getting out of the office and taking a walk to a nearby cafe gave me the space that I needed and helped me to feel more energised. It also gave me a chance to bond with my colleagues as a couple of them usually came with me.
What would have definitely helped would have been me speaking up sooner to say that my current workload was too demanding for me. That I needed help. That would have taken confidence that I didn’t have at the time but I will never make that mistake again.
I should have learned when to say no instead of taking on more and more when I knew in my heart that I wouldn’t be able to complete it. I just wanted to be seen as a productive and capable individual.
I should have been more aware of triggers to look out for to make me more aware when I was becoming depressed or manic.
I should have taken the time to explain properly to my employer what having Bipolar disorder meant for me and warning signs to look out for. All I could have hoped for would be that she would agree to support me with it.
Mental health awareness training for the workplace as a whole would have helped to answer people’s questions and probably led to them being more supportive instead of adding to the pressure.
Finally, I think some kind of counselling or awareness training to prepare me for being in a workplace with a mental health condition, would have made a difference.
Now all that I can hope for is that somewhere along the line, potential employers stop comparing me to Stacey from EastEnders and start to see me as the individual that I am. That they can look past the huge gaps in my employment and see the hard-working, passionate and determined individual that I am who just happens to live with a physical as well as mental health condition. All I can hope for is an end to stigma and for someone to give me a chance.