‘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 🙂
At least a few times a week I have decided to challenge myself, by giving myself an alphabetical theme to blog on. Each theme will be related to living with mental illness/ physical disability. I am also going to do the same challenge on my FBL blog Lifelovesandlipgloss.wordpress.com , although often using different topics for the different blogs.
I chose to write about anger first, because it is something that I struggle with a great deal.
My experience of anger as a child, my parent’s violence and emotional abuse, taught me how much expressed anger can hurt others, so I tend to BOTTLE IT UP.
My anger is mainly triggered by memories from the past which leave me feeling POWERLESS and UNABLE TO ESCAPE, stress which also leaves me feeling BACKED INTO A CORNER as well as UNABLE TO COPE, and being unable to cope leads to a great deal of FRUSTRATION, which makes me want to EXPLODE.
Turning it inwards
Instead of expressing my anger and frustration in a healthy way, I turn it inwards and attack myself. At first it starts off as a mental attack. INSULTS, ABUSE, SELF-HATRED. The things my parents and the bullies at school used to say to me, I say to myself: Ugly, fat, useless, pathetic, unwanted, better off dead.
The negative self-talk can only go on for so long before the anger bubbles over, like I’m in some kind of pressure valve, and I end up wanting to act on the negative feelings I hold towards myself, by physically causing myself pain, also known as SELF-HARMING.
Searching for a new anger-management strategy
At the moment though, I’m desperate not to follow the old negative patterns. I feel STUCK, TRAPPED. I know that I will lose my partner if I end up self-harming or attempting suicide again, and, if I do, I am also likely to end up back on the PSYCH WARD.
I’m trying so hard to change things. Firstly, I try to FILL MY DAY so I don’t have too much time to dwell on things. I try to do things that I know will RELIEVE MY TENSION, from watching a favourite TV show, to colouring in or other creative-type stuff. Blogging also really helps. It helps me to EXPRESS MYSELF in a CONSTRUCTIVE way and to feel LESS ALONE, when I realise that others are struggling with similar issues.
Hopes for the future
My hopes for the future are that my feelings of anger will lessen and I will FEEL MORE IN CONTROL of my anger,that I will learn to express it in a healthy way, that doesn’t leave me with feelings of REGRET after yet another explosion.
Do you struggle with anger? What ways have you found to manage it? What helps you to cope better with it? Either comment below or Tweet me @spursbythebeach.
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.
I thought I’d give you a brief update of what life is like, just over a week after I was discharged from a psychiatric hospital.
As most people probably find when they leave a long-term hospital admission, my financial situation is a mess. No DLA (Disability Living Allowance) has materialised since I got out and it could be weeks, if not months, before this is resolved.
This is extremely worrying as I have now got into heaps of debt, struggling to pay for my carer as well as other disability related expenses. Money is such a worry right now, it must be for me to even be mentioning it on here, for me to be crying down the phone to my dad during his out of the blue phone call today.
I spoke to my new Community Psychiatric Nurse (CPN) and social worker, and I’ve been instructed to write a list of how much I owe and to whom, so that they can help me to take action against it. I’m so worried about what that action will involve, and I wish more than anything that my physical and mental health weren’t so bad that I could go back to work and repay what I owe.
Also playing on my mind is that I will be waiting at least 4-6 weeks for an outcome in my PIP (Personal Independence Payment) assessment with Capita. I’m so worried, as without that financial help, my future options for paying for care and mobility related costs, will be greatly limited.
My care managers are trying to make a referral for me for additional support but I will still need the practical support that I get from my carer, as long as I can afford to pay for it, which is becoming less and less likely.
I’ve tried to continue writing, both blogging and creative writing. I’ve sent off a couple of pieces to competitions and the blog has had increased popularity in recent days, but this is causing me quite a bit of frustration as I’m still having to juggle my blogging/writing with how well I feel.
There are days I spend the majority of my time in bed and other times I’m in so much pain or having so much fatigue that I can’t concentrate on what I want to be able to do.
The level of my isolation is still really bad. Hardly anyone has been near me since I got out of hospital and even the ones who have, usually only want to meet on their terms.
I can’t help but feel sad at how far I’ve deteriorated in the past year. This time last year, I was all set to return to London to study for an English degree, I’d even given up my council flat to move into private accommodation nearby. Due to misinformation from different people at DWP, eventually causing me to become even more unstable than I was in the first place, I had to move back to Wales or risk -and here’s the joke – getting into debt.
Now things are so dire financially, I’m miles behind where I was academically, and emotionally I feel like I’m in ruins. I was counting on getting that degree so much, I had it all pictured in my mind, I was going to put everything I had into it and now I’ll probably never get that chance again.
The odds were always going to be stacked against me, living with disabilities, but now I haven’t even got a degree to show for it, my life looks as though it has been one huge waste.
I long to become a writer or journalist. I wanted so badly to get my voice heard but now I feel like it is being stifled.
I get frustrated blogging about how bad things are and I’m sure that you all get sick of hearing about it. Why doesn’t she just do something about it? I bet people are thinking. Well, I’ve tried and it’s left me in a worse position than the one I was in to start with. I feel like there isn’t a single move forward that I can take, like I’ve been checkmated.
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!!
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.
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.
Make a list of all the things that you are grateful for-big things, small things and everything that you can think of:
1.My partner…We’ve had our ups and downs over the years and he is currently in prison, miles away from me, but he is such a huge support and I really do love and miss him so much.
2. My friends…it’s true that friends are the family you choose and mine have been through a lot with me. Being in a psychiatric hospital it’s surprising that not only do you make new friends who understand what you are going through, but you also realise, who of your existing friends, are your true friends.
3. My family…especially my newborn niece. I never thought that I could be more proud of my younger sister than I already was, or be so broody. Sadly, thanks to the meds I’m on, I’ll probably be unable to have kids of my own, so instead I will be spoiling my perfect little niece.
4.Being able to read…although it’s a battle at the moment, it helps me to get lost in someone else’s story, escape to another place/world. Reading has always been my refuge. I’m gradually clawing back the concentration levels I once had, which is a real battle against fatigue caused by the form of arthritis that I have , mental illness symptoms as well as the medications for both conditions. When I’m not able to read I feel angry, frustrated and alone.
5. Being able to write…This is another battle, especially when I’m constantly struggling to keep my eyes open. I love being able to express how I’m feeling deep inside in a constructive way. I like the writing community that I’ve found and I’m beginning to feel a part of it by blogging. I also love that I’ve been able to share my experiences with others as well as to raise awareness of mental illness.
6. My personal assistant/carer…although I’ve had to pretty much let her go for the time being till my finances are in better shape, she has made herself available, even now, for the measly number of hours I can offer her, which shows me what a true friend she is, as well as the fact that she’s made a huge positive difference to my life.
7.Arts and crafts/being creative…I love cardmaking, scrapbooking, clay modelling/sculpture making, photography etc. I love spending time being creative as it helps me to escape my thoughts for a little while and gives me a more positive focus.
8.Watching good/bad TV…A personal favourite is Home and Away. Again, anything that gives me escapism and helps me to lose myself in something else for a while, distracting me from my thoughts. I love the thought of sunning myself on a hot, sandy beach eyeing up the even hotter surfers.
9.Shopping…especially for books, clothes, toiletries and arts and crafts stuff. I tend to overspend though which can be a bit of a problem.
10. Pampering myself…getting someone to do my hair, doing my make-up or trying out new outfits. Anything a bit girly and something to take my mind off things.
Well considering how negative I am feeling at the moment I think 10 things to be grateful for is a pretty good start. My eyes are quite heavy again at the moment, so I’m going to leave it at that. What things are you grateful for? Feel free to comment or tweet me @spursbythebeach .
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.