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!
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 .
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.
Well, treatments are a very fitting topic for today as it was only yesterday that I had an appointment with my psychiatrist, care manager (social worker) and tenancy support worker.
Thankfully my blood tests had come back ok so I was allowed to start Lithium. Because I’m on anti-inflammatories for my AS I have been started on a lower than usual dose which will be gradually increased over time. For now, they’re keeping me on my Aripiprazole (Abilify) until they think that the Lithium is working enough to reduce it.
I’m relieved I’m not being weaned off my current medication and I’m nervous about starting lithium, especially after all of the warnings about lithium toxicity. I’m hoping that no trips to A&E will be necessary.
I’m also nervous about lithium because I’ve been on it years ago. At the time it left me feeling doped up and out of it and I wasn’t even at a therapeutic dose. I worry that it will do the same again because I really don’t want it to get in the way of my writing.
The reason I’m trying it again is complete and utter desperation. I’m sick of my moods swinging like a yo-yo and just want to reach some form of stability. Well, to at least be more stable than I am at the moment. I’m sick of the anxiety, the paranoia, the isolation, the suicidal thoughts, I just want it all to stop.
It won’t be as easy for them to treat me with lithium because as well as Bipolar disorder I also have BPD (Borderline Personality Disorder). Because of this and because of the fact that things from my past are still affecting me I once again asked about counselling.
I have been on the waiting list for 2 years and my social worker has been trying to chase it up but so far no news which is really stressing me out. It annoys me when people think that medication will be a cure-all. It may help a great deal but it won’t change the past or how I deal with things. It won’t help me to learn to recognise triggers or early-warning signs, only therapy can do that.
My social worker said she will chase it up again so I’ll see what she has to say by next week when I see her. If I wasn’t so broke I would consider paying to go private. Some therapists even offer fees on a sliding scale for people who are on benefits.
Recently I have been discussing another form of treatment with a researcher into mental health bloggers, how much blogging helps me. At the moment it is probably my only positive outlet and helps me to express myself and learn more about how my mind works and why I think/behave the way that I do. The research that I’m taking part in will eventually be published in a journal so I’ll keep you posted with what happens where that is concerned.
The other major event that happened this week is that my laptop gave up on me. I tried to get it fixed but the fault was too serious so instead I’ve bought a refurbished one and I’m hoping it lasts till I can get another new one.
It’s meant that financially things are tight but I couldn’t be without a laptop and I couldn’t be without blogging. It’s my distraction, it’s my purpose, it’s my encouragement and it’s my hope. Do you blog? What does it mean for you? Feel free to comment and thanks for listening 🙂