From next Sunday onwards, on Sundays, I’m going to be posting a recovery-focussed post. Today though, I thought I’d write an update post to highlight where I’m at:
- Because I need to express in words what’s going on and,
- Because you will begin to understand why I’m so recovery-focussed on future Sundays. (It’s not because I believe that I have all of the answers but, if I find any, I want to share them with others facing similar issues).
This last week and a half has been awful mood-wise. As those of you who have been reading this blog for a while will know, as well as a diagnosis of Borderline Personality Disorder, I’m also physically disabled (Ankylosing Spondylitis – a form of inflammatory arthritis).
I’m actually in the process of starting up a blog about my life with AS as I’d like Brokenglassshimmers to be about mental illness and mental health recovery, as well as the issues that those of us with mental illness face. There is a reason for me mentioning my AS in this post, as you will see shortly…
I had an appointment with the rheumatologist almost 2 weeks ago. Because of the level of physical pain and stiffness I was struggling with (which was, in turn, bringing me down mentally), he reluctantly, as he knew about my mental health diagnosis, prescribed steroids.
It took a lot of persuasion from me, and a promise that at the first sign of any problems, I would stop them. I felt confident as I’d previously had steroids around a year ago and, looking back with rose-tinted-specs, thought that I coped ok with them.
Instead they have caused me nothing but mental health problems. My anxiety and panic attacks are back with a vengeance, so whereas before I was hoping to wean myself off Diazepam, I’m back to taking the full, prescribed dose.
My sleeping is also all over the place, if I wake in the night I struggle to get back to sleep. I am back to having really severe mood swings, I am extremely over-sensitive and paranoid. Plus my social anxiety is back, so I’m literally shaking with fear about the thought of attending the creative writing group that I began before the steroids.
Why don’t I stop them? You may be thinking. I actually did, a week ago, and I’m still experiencing symptoms, although in total, I was only on them for a few days.
I veer from drained but unable to sleep, to buzzing with ideas. Internally I’m exhausted from the anxiety and lack of sleep and, to top it off, because I’m no longer on the steroids, there is nothing to stop the really bad flare-up that I’m having, of my AS.
So I’m worse than back where I started from. I feel lonely and isolated, but terrified of people. I go from wanting to hibernate to buzzing with ideas.
Sometimes I feel like a fraud for writing about mental health recovery when I haven’t ‘recovered’ myself, but the reason I do is because I’m so desperate for answers, a way to stop the torment that I’m in, and a flicker of hope that things can get better.
What do you think about recovery-focussed posts? Do you find them helpful? I can be contacted in the comments section below or on Twitter @spursbythebeach. 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.
Today I finally had some news from Department for Work and Pensions (DWP) about my disability benefits and it looks like it will be very good news.
I’ve been fighting for this day for so long, after hearing all the scare stories, I never expected to actually be awarded the rate that I should be entitled to due to the impact that living with physical and mental disability has on my day-to-day life.
It felt like forever to get a result and I’ve still only heard that result verbally so I’m waiting to see it in black and white before I allow myself to get too excited.
That help financially will make such a huge difference to my wellbeing. I will be able to pay for my carer, pay travel expenses to attend additional activities and pay for all the extra costs involved in living with my disabilities.
Now that that pressure is off me a bit, I have also started to try to make decisions about what I want from life. For years I thought that that was university but I’ve realised that my main reason for wanting to go to university was because I thought it was my only route into becoming a writer/journalist. Thanks to blogging, perseverance and hard work, it looks like my writing dream could become a reality.
The decision I must face now is that if university is not an option for me, then what is? I want a challenge but I don’t want to make myself ill. I’m looking into online distance-learning courses in journalism and blogging. I’m also looking into attending a local day centre that does arts and crafts and therapeutic wellbeing courses. I’m also hoping to attend book groups at my local library. I want to try to build my life up and build up a social circle.
How are you trying to get your life back? What do you think will help your recovery?
Tweet @spursbythebeach or comment below. Look forward to hearing from you.
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!!
One recovery strategy that has aided me in the past to improve my mental health is Journalling for self-expression. My task, for at least the next 32 days is to follow the guidance of montrealtherapy.com , Journalling for self-expression tasks .
Each day I will attempt to complete, and post, my target for the day. Others are welcome to join me in this . If you do , post your links or write your thoughts in the comments section below.
This task stemmed from courses I attended at South-west London ‘s recovery college. These were aimed at Journalling for self-expression and telling your story, both of which helped me to open up better, which probably led to me writing this blog.
The first task is to write down what happened that day and how you felt about it (my entry is actually about Wednesday, although I will try to stay more up-to-date in future). I wrote as much as I could remember about a 24 hour timeframe .
I think I woke up pretty early on Wednesday . After a cup of tea, I did some preparation for a blog post but mainly ended up chatting to other people on the ward. The downside of being a blogger in a psychiatric hospital, is that it’s so easy to get involved in other people’s problems/dramas, to procrastinate and never get anything done. To fight against that, and because my body seems to be most active at that time, I’ve been waking up early and trying to get my writing done in the fairly quiet hours on the ward.
9am came around before I knew it and my advocate had arrived. The wheels are in motion for me to have a meeting on the ward of all the professionals trying / trying not to be , involved in my care. This will include the hospital team, my physical disabilities social worker, the CMHT (Community Mental Health Team) and the crisis team.
After that I managed, in a long, tedious, drawn-out, painful process, to get ready for the rest of the day ahead.
What a mess
After this, all I could think about was my partner and helping him out of the financial mess he’s got into in prison, despite the fact that I knew I’d be broke , with big bills due out and my DLA being stopped and overpaid due to the 28 day hospital admission rule not being explained very well by the ward on arrival.. Part of me was also worried about being moved to another ward for a period of time. I know that my mood is currently unstable and I didn’t want it destabilised further by constantly moving between wards.
The great escape
It crossed my mind to do a runner from hospital and go to stay with my mum in London (as you can see, I don’t always think things through with complete clarity). My mum refused to let me stay with her which distressed me further so I got even more distressed. I told the nurse I then went to speak to, that if they wanted to move me wards , they would have to do it forcibly. The nurse was taken aback as I’m usually easygoing, and tried to reassure me, but I was having none of it.
I felt backed into a corner with the quicksand of a mixed episode /rapid cycling deepening and deepening. I was especially concerned about seeing a woman I’d previously been friends with.
After that I called my carer to ask if she could come in early for her last proper day, as I’ve had to let her go, at least temporarily . I was so on edge, I just felt like I was going stir-crazy in the hospital and it made me realise how bad I was going to feel, and how isolated I was going to be in future, without her.
A fixable mistake?
Just before my carer arrived, I had a phone call from my tenancy support worker about my rent arrears. It looks like there has been a mistake with the demand and it is being looked into. I still feel fretful about it but the tenancy support worker has insisted that she has not given up and will be looking into it.
My carer then arrived and we went to sort out the financial stuff that needed doing. This included a problem that had been causing me a great deal of worry.
I went for brunch after a bit of window shopping which ended up delaying me further so I had to rush the meal to get to my friends’ house as they had written me a supporting statement for my PIP assessment form.
What they really think
When I read the statements the ward manger, my carer and friends had written, it made me recognise a few things. Firstly, how much of a trigger my family are to me, secondly, how little independence I have, thirdly, how worried others are about me and lastly, how much I rely on help from other people. This caused me even more anxiety about losing my carer.
We went back to the flat as I was expecting the OT (Occupational Therapist) to visit, furniture to be delivered and to fill in the PIP assessment form with my carer. Nothing got done and I ended up taking diazepam that I had left over from an old prescription, something that, as a hospital inpatient, I am not allowed to do.
I needed to get out and followed my usual pattern of being mixed (depressed and on edge) and overspending money that I really don’t have. I went to Hobbycraft, which is always dangerous for me. In the end I bought some scrapbooking stuff, another book to attempt to organise my chaotic life in, in a pretty way.
I then spent more in M & S getting food treats for me and one of the other girls on the ward.
After that was my last drive back with my carer which made me feel really lost and hopeless.
An old friend
I got back and one of my friends had sent me her number via Facebook and we talked. It turned out that she was depressed and what I said about needing to seek help seemed to have little impact. I pleaded with her to contact the hospital and she said that she would. Not long afterwards I received a text message saying that she had taken a serious overdose. I met her recently in hospital and I don’t have her home address , so, out of my mind with worry, I had to inform the ward staff. They tried to reassure me that they’d called the police and it was ‘in hand’.
After this I deteriorated for most of the evening, I felt really depressed and on edge with the occasional glimmer of ok when friends were able to distract/comfort me, which would then leave me feeling guilty. It didn’t help that I had pain in the opposite arm to the one I have suspected nerve damage in.
What a start to the day
The next day started badly and I ended up experiencing a stabbing pain in my knee while I waited impatiently to see the doctor. The pain didn’t last long but it scared me because of the amount of pain meds I’m already on and how bad the pain was.
When I saw the doctors ( I ended up seeing two) , they said that they didn’t see any evidence of obvious inflammation, this made me feel like they didn’t believe me, although they disagreed. They just told me that the rheumatologist needs to see me. This would be all well and good if I’d been able to visit my flat sooner and received the letter from him in time to get to my appointment, which was due yesterday.
I felt so angry, frustrated and hopeless. This really led to me feeling suicidal. My mood drops so quickly lately that it’s frightening.
A bad combination
It was so hard, with a combination of disturbing memories, stress in the present and fear of the future. There was so much that I longed to do but my belief was so strong that I felt that I couldn’t do it anymore. I try my best to keep on keeping on but it is so hard at the moment. My blogs are kind of safety factors as there is so much that I want to do with them. I just need to believe that I can do it.
My overriding mood for that 24 hours was exhaustion/fatigue whilst being extremely on edge. I’m so scared about how I’m going to cope. I have so many things in my life that need to be sorted out, I just can’t focus on anything in particular and I worry that I will never be able to.
Fearing the future
I’m afraid of isolation, of my pain and mobility levels getting worse, and that despite my efforts, my mental health will continue to become more and more unstable, with mood swings that will lead to me spending more and more time in hospital .
I’m sorry that this has been such a long, overly negative post. I’m not even sure if I will post it.
The phone call
My partner called. He tried to convince me that I need to ask for help more often. He also told me to think about who my friends are, because although people aren’t mind readers and have their own problems, it’s obvious to everyone, especially those who know me, what my difficulties are.
Is anyone else struggling to deal with having a physical disability and/or a mental illness? I feel so alone right now, it would help a lot to know if there are others like me and how they cope. Thanks for listening.