For each of the top 5 things you identified in the last list, list 10 things you can do to gain control of the situation. Underline the top 3 from each list.
Part one:Worry about my partner
Things I can do:
1. Gain more control over my finances, especially by getting out of hospital as soon as I am ready as well as trying to send more money and visiting more often.
Part of this involves him getting a move to a closer prison so at least then I can come up on visits. Six months without visits and support is a long time to go.
2. Write to my partner more often
At the moment, after a lot of nagging, my partner is writing to me regularly. Due to an arthritis flare-up and severe anxiety and depression, I have had really bad fatigue. I need to get better at juggling writing with rest. I also need to get better at asking for medications on request for pain, when I need it, which I usually do. I just hope that this makes a difference with my levels of pain and fatigue.
3. Be more honest about what I’m struggling with, to my partner and others
It helps so much Blogging and Tweeting about what’s on my mind. There is someone even more important that I need to speak to – my partner. He really loves me and wants to help, he wants to know how to help. Sometimes I’m not sure what will help me, but if I keep him informed of what is happening and advise him of the little things that make a difference [like today over the phone he read me out a page-long love poem] then he has a head-start on how to help me.
It’s hard to be honest sometimes knowing that if I’m too honest, I’ll leave him feeling worried, upset and powerless to do anything. Often I just tell him the partial truth when the full truth would leave him worried sick. In reality I need to make sure that he has the full facts in order that he can show greater understanding.
4. Work on my anxiety so that I could emotionally cope with a visit.
I have apps on my phone, books and websites I could use as well as a weekly appointment with a psychologist. My next big challenge is to spend most of next Wednesday in my flat, probably alone, which I’m really worried about how I’ll cope with.
I need to utilise what I’ve been taught and start to put it into practice. More on coping with anxiety soon.
5.Make sure that my partner continues to write to me regularly.
This sounds a bit unfair when I’m not writing to him as much as I used to. It does make such a huge difference though, hearing from him.
6. Encourage my partner to open up to me more often so that I know the real things that are bothering him instead of fearing the worst.
I always know when something is wrong with my partner so when he refuses to confide in me , not only does it hurt, but it also causes me to imagine that he is keeping something far worse from me than he usually actually is.
7, Accept compliments from my partner. Really let all the good things that he says sink in, instead of believing all the negative things from my childhood.
I’ve been put down for so long, by so many people, that I need to unlearn all of that stuff and keep in mind the kind things that my partner says instead
8. Speak to the Assisted Prison Visits Unit to discuss options for a visit to be planned and paid for in advance by them.
They usually very generously refund the cost of visits if you are on certain benefits/a low income and occasionally they offer this help for me, I need to find out whether this is an option for me within the next month or so. I miss him so much.
9. Write a letter to the prison governor supporting my partner’s request for a move to a prison closer to me
I’m hoping that after hearing the difficulties I face visiting my partner due to my disabilities that they will take pity on us and move him to a closer prison.
10. Once I’m out of hospital, maybe even before, start planning for mine and his future together. Things like visits, planning for our wedding and building a home together.
All I want from life, well my main aim really is to spend my life making mine and my partner’s dreams come true.
I’ve gone back and underlined the top 3 I want to try and have included an explanation of how I intend to follow them. Does anyone else have any ideas that I haven’t thought of? Or is anyone else struggling with similar issues? Get in touch in the comments section below or Tweet me @spursbythebeach. I 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.
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 .
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.