Bottling things up
I’m so tired of bottling things up. Of putting up and shutting up. There is so much I want to say and the truth is I don’t know where to start, or whether or not it’s worth starting, when all it’s likely to do is finish off burning, the already burnt bridges.
I said in my last post how tired I was of one-way friendships, we agreed on Twitter that it was time I made new friends well perhaps that is true. If that’s the case though, why is it so hard to let go? Why am I reminded of the good times we shared and left wondering ‘what if?’.
I blame myself, for pressing the self-destruct button on my life and pushing away the people I cared about. Now they’re pushing me away and while I’m at this vulnerable point in my life, it really hurts.
Sometimes women in their twenties and thirties still behave like Mean Girls. There is still so much ignorance about mental illness and hospitalisation, even from those with mental illness themselves.
Then when I think to myself that at least, whatever I’ve lost, I’ve always got my partner, he starts to push me away, which leads me to feel extremely insecure. He may be in prison but usually it feels like he’s the only one I can count on. Since my financial problems though, things have changed. At first he was really supportive, a huge encouragement. Now though it feels like he has forgotten what we’ve both been fighting so hard to achieve.
I am becoming more and more reliant on Lorazepam and sleep as a way of getting through this awful period. As a matter of fact, I can hardly keep my eyes open now, so I’m off to hibernate for a little while. Hopefully I will make more sense when I return.
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.
Well a lot has been happening in the Brokenglassshimmers household. First of all, as of today, I am officially discharged from hospital. I am no longer a psychiatric ward patient. The enormity of it all, makes me feel emotional. It feels like the safety net keeping me from falling through the cracks has gone and now I’m scared.
Everyone is trying to get me to focus on the fact that I’ve lasted on leave for over a fortnight, but that survival has been such a huge battle to achieve. The Ward psychologist, during our last appointment today, helped me to figure out a few things.
Firstly, if I was well already, hospital probably wouldn’t have been the best place for me in the first place. Being hospitalised, even as a voluntary patient, has a huge impact on your life. Being hospitalised for about four months, the length of time that I spent on the ward, then learning to adjust again to life on the outside, is a huge leap of faith. You have to learn to trust yourself again. You have to find even the smallest shred of hope and faith that you can, and claw back your fighting instinct, so that, maybe one day, you get yourself back again.
Secondly, he talked about my too-high expectations of myself. I’ll be completely honest now and this will probably sound really pathetic, but after a year or more of blogging, I beat myself up for not having got to the level that I want to be at by now. That’s not even necessarily about followers, comments, or likes, although those things are really appreciated. I beat myself up that my standard of writing isn’t good/hasn’t improved enough.
The same applies to my creative writing, the only way that I can improve is by practice and feedback but I lack the motivation to practice and get feedback because aside from my pain, fatigue and concentration problems, I’m not happy with the level that I’m at when I do write. The psychologist encouraged me to keep trying so that I do at least have a chance of success, whatever that success looks like is another matter.
Thirdly, he told me not to put up barriers when I’m challenged. He explained that part of my new psychological input from the Community Mental Health Team (CMHT) will probably include empathy and validation, but that the other part of it has to be about challenging me to change longstanding thoughts and behaviours. He also told me how important it is that I learn to validate myself and that although I use the love of others, mainly my partner, as a reason to keep living, I need to want to live for my own sake, my own dreams and aspirations.
I confided how disappointed I am that I haven’t achieved more with my life, that I feel like I’m just existing, begging for help but not getting enough of it to really have a life.
As I left the ward, I felt so many mixed feelings. A longing to go back to the very beginning and really make the most of every bit of treatment that has been made available to me, a dream to never see that place again, a sadness at the time I wasted whilst I was ill and a recognition of how much I’ve grown and learnt both about myself and others.
In other news, I’m majorly freaking out about my Personal Independence Payment (PIP) assessment with Capita this Wednesday. I’m worried sick that they won’t listen to me or will fail to understand how much of a challenge life is for me. I need them to see how much of an impact my physical disability and mental illness has on my daily life and how reliant I am on the care that my Disability Living Allowance (DLA) pays for, how isolated I would be without that care, how my life wouldn’t be worth living if I lost that help.
My carer is going to go along with me but she’s just as nervous as I am as she knows how much of an impact this decision will have on me.
Lastly, there has been a new addition to my family. Kitty is a beautiful cat who I got from an RSPCA animal rescue centre yesterday and I can’t believe how well she’s already settling in. It meant so much to me having her trust me enough, after all that she’s been through, to lay on the bed with me for a little while on her first night with me. I know that she’s going to be a big responsibility and it is hard looking after her when I can’t even take care of myself . But however much discomfort it causes me physically, the love that she gives means so much that I’m going to do my utmost, with the help of my carer, to take really good care of her.
What keeps you going? What are the things that you beat yourself up about and what encourages you to keep fighting? What would you do if you were no longer beating yourself up about what you get wrong? What could you achieve? Please feel free to comment below or tweet me @spursbythebeach .
Many years ago a friend of mine ended up in Bristol, lost, looking for the way to London (so you can guess how lost he was). The man who kindly stopped to offer him directions, on finding out his intended destination, responded: “I wouldn’t start from here if I were you!”
I recalled this story recently, on leaving hospital (I spent a few months on a psychiatric ward). It made me think about whether hospital is the right place to start from when working towards your recovery.
I don’t want to pretend that hospital is completely black and white, that it’s all good or all bad. There are positives and negatives to being admitted and I definitely found this:
Positive: Staff intervention
When staff intervention worked it could have a real impact on my recovery. Knowing that I was believed, that people cared and that they were seeking out the best course of action to provide me with long-term support, meant so much. Without the support of the hospital staff such as my ward psychiatrist, psychologist and the ward manager, I probably wouldn’t be about to meat my Community Mental Health Team Care manager. Having someone unbiased to talk to, well whose only bias was seeing me recover, really helped such a great deal too. An outsider’s input can help to put a lot of things into perspective.
Negative: Staff intervention
When staff intervention didn’t work it could really bring me down. Staff with a taste for the power they had, or those who were just having a bad day, probably didn’t realise how much damage they were doing with their negative attitudes/comments, but could undo a lot of the good work being done by the good staff. If, like me, you have had a lot of negativity in your life, the last place you need that to continue in, is hospital. Perhaps staff need to recognise how much their bad days can impact those who are in a vulnerable position. We’re all human, definitely not perfect, but for those who choose career roles that can have such an impact on the lives of vulnerable people, they need to think twice about whether that choice is a sustainable one.
Positive: Other patients
Sometimes there could be a great deal of support and camaraderie on the ward from other patients, a few of whom even become friends. It’s especially tempting to start leaning on other patients when your friends on the outside stop visiting and you want to feel less alone with this mental anguish. Speaking to others who have similar worries and experiences can really put your mind at rest and definitely make you feel less alone.
Negative: Other patients
When it didn’t work out with other patients, when you leant on someone else too much and they ended up harming themselves or distressing you with rejection, this could really provide a challenge to remaining focused on your recovery. Also when there was conflict on the ward, even a small conflict, it left a negative atmosphere for everyone and caused us all to feel uncomfortable.
Positive: Putting help in place
I was lucky that the ward I was in not only had an excellent psychologist but also had senior staff who were focused on making sure that you wouldn’t have to come back again. This meant that they generally really fought for me to get the outside help that I needed, which definitely proved to be an uphill struggle. They never gave up on me though.
Negative: Becoming institutionalised
By the time I left hospital, after the few months that I spent on the ward, I was beginning to see less of a life on the outside, less of a reason to fight and more of a need to stay, as I wondered if I would ever truly be ready to deal with everything life had to throw at me. Thankfully a few members of staff gave me a kick in the right direction, and I decided to brave it, but it hasn’t been an easy choice to make.
Positive: Keeping you safe
Hospital staff can’t watch every patient non-stop but they can ensure that if you are feeling at risk you have a far greater chance of remaining safe than you probably would be on the outside. This opportunity to remain safe increases the more you are honest and cooperative with those who are trying to take care of you.
Negative: Isolation from people on the outside
After a week or so of being in hospital, people, intentionally or not, start to drift away from you. They give up inviting you out because they know that you are on the ward and they stop calling because they are disturbed by what they hear when they do. It’s painful but going through something like this really shows you who you can really rely on. If you have a friend in hospital, cards, phone calls, visits mean so much. Knowing that they have people to come out to, who haven’t given up on you while you’ve given up on yourself, means so much. If one of your friends has been in hospital and you realise that you haven’t been there for them as much as you perhaps could have been, it’s never too late to start!
Positive: Less risk factors
With the focus on keeping you safe you become used to things like having your privacy invaded with, for example, bag searches, for your own protection. You still have a part to play in keeping yourself safe but it helps a lot to know that you are not the only one working towards this.
Negative: Lack of home comforts
You risk damage/loss to any valued possessions if you bring them with you so often you have to learn to do without. Added to this is the dodgy food and having to share toilets/bathrooms with people who may have quite poor levels of hygiene. There are times you will long to be at home, for the peace and quiet especially, but the grass is usually greener.
Negative: Getting used to the silence afterwards
Being in hospital can be one of the most challenging periods of your life but the biggest challenge is surviving life after hospital. The silence will eat at you and the lack of people to talk to/confide in, especially if you’ve lost contact with people on the outside. Being out can lead to extreme isolation and you will have to fight hard to beat that.
So as you can see, hospital can work but there are factors to bear in mind and, in my opinion, it should always be the last option for someone and you should go into it with the expectation that keeping you safe is the most important aspect to being hospitalised. This can come at a price though so choose carefully!!
Well I’ve skipped a task again as I’d already kind of answered the last one, plus this task applied more two days ago when I first wrote it out in rough. Sorry for my delay in posting, my fatigue has been absolutely awful.
Make a list of things that you feel upset about right now. Write down as many as you can think of until you can’t think of anymore. Then choose the top 5:
Not being able to do everything that I want to do for myself:
From carrying myself a cup of tea (at home I have a hatch so don’t have to rely on the kindness of others) , to struggling with grooming, shopping and isolation because I struggle to get to places. Even at home, the local bus stop is minutes away from me but too far for me to get to without severe pain so I remain reliant on taxis or isolated in my own home.
Being on a psychiatric ward
In myself, I feel that this proves that I am weak, that I have given up, lost the fight. The atmosphere is tense at best, there is a lot of paranoia, including from me, which makes it an extremely difficult place to be. On top of that, it’s difficult to unwind, you can’t usually watch TV because of the constant background noise, even reading in your own room is a challenge. This is especially the case because if you do start spending a lot of time in your room then people assume you either have a problem with them or are being stuck-up. On the other hand, if you do come out you have to deal with everyone else’s problems and needs, as well as your own.
I’m worried about whether I’ll ever get to see my partner again.
It’s been 6 months and I miss him so much [especially as I’m typing this while we’re apart on Valentine’s day] . It’s hard because we get to talk so little, writing to him has been hard as my fatigue has been so bad and visits are impossible while I’m a psychiatric inpatient and my money has been cut as a result. Plus the thought of the journey then being trapped in a visiting room with loads of strangers, I just don’t know if I could do it. That thought makes me feel so guilty because I think I should be strong enough to do it for him. I miss him so much and I feel like a complete failure.
Waiting for the result of my hospital professionals’ meeting.
My anxiety about this is overwhelming and I am so convinced after two no’s from my previous assessments that it will be another no from them. If that happens my fear is that I’ll be stuck on a psychiatric ward long-term and I don’t think I could cope with that. My head is such a mess and I don’t see how I could cope alone in my flat without a decent level of support. The option of staying here long-term or being home without help, makes me want to cry.
My poor money-management.
I’m in debt, I’m trying to pay for my carer again because I couldn’t cope without her. I’m struggling to pay for the costs of my disability without Disability Living Allowance. The bills are mounting up and getting ignored, I’m getting chased for past debts and the whole thing is just making me feel ill.
My anxiety is causing me anxiety.
I’m either off my food or binge eating, I’m feeling sick and I just feel like crying all the time. I haven’t had panic attacks this bad since I was 19 (I’m 29 now). I just can’t cope. I can’t handle crowds (even small ones), I can’t handle being alone. It feels like life is impossible.
My paranoia is making me feel so depressed, I’m convinced that the whole world is plotting against me.
I don’t trust most people, I’m even convinced that my partner, who I adore, will get sick of me and leave me. All of the emotional abuse from my childhood is coming back to haunt me. My friends aren’t trusted to really care and I don’t even trust the food on the ward so I’m living on snacks. I’m terrified about what is happening to me.
Being many miles away from my family and friends.
I keep beating myself up for not working things out and managing to stay in London. I feel like I was happier and safer there. I wasn’t cured but I had more support and distraction, I was loved. My partner isn’t far from London and my entire family are over there, including my newborn niece. I feel like I’ve lost everything.
Negative comparison to others
I’m constantly beating myself up for not being a pro blogger by now (a year), a top published author, having the perfect figure and having finally got that Phd I’ve always dreamed of getting (when I didn’t even finish my degree). I compare myself to friends and family who have successful marriages with kids, and I compare myself to others who have talent, dream jobs or travelling opportunities.
Everyone is always on at me to be kinder to myself but I feel like to do that, I should be in a better place in my life rather than unemployed, stuck on a psychiatric ward.
Picking the top 5 things that upset me is really difficult as all of the various things merge into one. If I had to pick, it would probably be:
1.Worry over my partner
2.Frustration over not being able to look after myself properly (physically and financially.
3. My CMHt assessment
4. My anxiety
5. My negative comparison to others.
Day 5’s task, is for each of the 5 things you identified (in the last task), list 10 things you can do to gain control of the situation then pick the top 3 things from each list.
As I want to include explanations with each possible solution before I make my choice I have decided to split each problem into a post on its own so there will be 5 posts linked to this one then later I will hopefully do a follow-up post/s letting you know how I got on with my solutions.
How would you deal with these problems? Are you struggling with similar difficulties? What are your ways of coping? You can comment below or Tweet me @spursbythebeach . I really do 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.