Saturday 13 May 2017

Sabotaged Life Lines

It's a long time since I did a 'this is what's happening/happened and this is how I feel' post, which is really the purpose of this blog. This blog exists so I can:

1. Protuctively let out my feelings rather than turning to self harm.

2. Process thoughts, reasons, and events.

3. Educate others to help end stigma faced by sufferers of mental illness.

4. Be myself without fear (hence the pseudonym).

In spite of good intentions, my last Zombie post (excluding the one related to the General Election) was way back in January (thereabouts). That's kinda what I want to talk about; why I haven't written anything and why this blog seemed to become a pointless endeavour after January. My reasons for not writing are as important as my reasons for writing, because they are the very reasons why more people need to write about their experiences. No one ever changed the world through silence and inaction.

Now, I want to make something clear; the feeling of pointlessness with regard to this blog did not come from my internal mental state. Many feelings of pointlessness do come from within, but this specific case came from external interactions with those who either had a duty of care towards me or who we relative strangers. These people, these carers workers and people I've only ever spoken to online (and live continents away from), seemed to make it their mission to sabotage my life lines. I don't know why the want to do that, but it's a type of behaviour faced by sufferers all over.


January started off quite positive. I saw a consultant, was given additional meds that helped me sleep, I was put on the waiting list for therapy, and was also promised another consultant appointment three months later. I managed to move past the fact I'd already been on waiting lists for help for the better part of a year and accept being put on yet another, and at least there seemed to be movement. I was still being seen by the Community Mental Health Team's 'Step Up' Team and I felt hopeful enough that my self-harming behaviour began to lessen in frequency. 

Then things fell apart.

First, Step Up insisted on pushing 'graded exposure' for my agoraphobia and social phobia. I said that I didn't want to do the graded exposure until I had done the stress tolerance stuff and therapy, because until then I wouldn't be equipt to deal with the stressful emotions triggered by graded exposure. It seemed pretty sensible to me to get help with emotional control before putting myself in a high stress situation. It seemed too much like setting myself up for failure to focus on graded expose when I knew I wasn't equipt to deal with it. It's not that I don't want to do graded exposure, just that I want to do things in a sensible order. 

Ha ha ha. How naive of me.

Step Up disagreed with my request to delay graded exposure and informed me that if I didn't show signs of improvement they'd discharge me for not engaging. 
I admit, at that point I got a little upset because I was engaging, I just wanted to do things in an effective order, rather than trying to stitch up the wound without first removing the  weapon responsible for the damage in the first place. Or, if you want another metaphor, I wanted to call the anaesthetist before handing the surgeon a scalpel. I got so upset, because I felt I was being threatened into compliance and made to feel like I wasn't trying to help myself that my mind told me it was all pointless. 

It told me there'd be no help.

It told me I couldn't trust the Community Mental Health Team.

It told me I wasn't worthy of help.

I wan't to emphasise that I did not shout or lose my temper. I was upset, yet, but despite the reputation of those with Borderline Personality Disorder, I tool a deep breath and told my 'care' worker that I was getting upset and we needed to drop the subject for the week. She continued to push, and push, until I broke down. Maybe I shouldn't have been surprised, that same woman dismissed the inappropriate touching I'd experienced from another child as a pre-teen as 'childhood experimentation' rather than listening to what I was saying about how it hadn't been what I wanted, how pressured I'd felt, and how the guilt had continued to affect md all my life. She dismissed, rather than addressed, so it shouldn't havd surprised me to learn she'd rather dismiss me than adress the root cause of my problems.

She left my house while I sat sobbing my heart out on my husband, begging for a knife, while vivid imagery of what I'd do with it played in my head. A woman who'd been assigned to me after Crisis Team discharge because I was still at risk walked out of my house after sending me into a spiral. She put me back where I'd been the night I was first put on the Crisis Team's caseload.0. She set me back by months. And she walked away.

Not a good thing to do to anyone with a mental illness, but add into the mix Borderline Personality Disorder, and you have a powder keg of self-hatred and devaluation.

At my next Step Up appointment, my assigned care worker brought her line manager with her, presumambly because of the tensions the week before. She didn't forewarn me that she would bringing anyone else, though. She could've phoned my husband in advance. Instead, she brought a stranger to my home with no prior warning, despite knowing I have social anxiety and take a long time to trust anyone. My needs became secondary to the needs of the person assigned (and theoretically trained) to help me.

At that point, when I discovered she'd brought her line manager, I felt like they were telling me I was the problem, without words. To me, my mental illness is the problem, one I need support to recover from through a care plan that takes into account my specific needs

That's important. All patients need to be seen as individual cases. When someone has chest pain, you work out whether its a heart problem, a lung problem, an irregularity or an jnfection, be it bacterial or viral. You don't give an  asthma inhaler to someone who need coronary bypass surgery. Care providers have to consider what a particular patient actually needs rather than pushing the treatment which is easiest from them to offer. A simple solution that only deals with external symptoms but not internal causes would've been pointless, but that seemed to be what 'graded exposure' would provide. Apparently the very people employed to help me  with that problem didn't want to provide a care plan to suit my needs though...

The pair once again went over how I either had to do graded exposure or there would be no point in remaining under their care.  It seemed to me that they we implying:

There was no point in someone coming around to talk to on a bad day. 

There was no point in support with mood diaries and activity/productivity. 

There was no point in building the trust with mental health services that might keep me alive. 

They said there was no point in continuing to be under their care, and with that they flipped my BPD switch from trying to engage to wanting the distance because I felt I could no longer trust them, a problem compounded by the lies my original care giver then gave in front of her boss.

The week previously, I'd shown her my mood diary, and she barely glanced at it. Shd didn't discuss any of the issues noted on it and offered no support. Then, once her boss was there, she announced that I wasn't engaging and I'd only filled in 'a couple of days'. At that point I got rather angry, so angry that rather than shouting, I tensed up and started shaking as I dug out the previous weeks mood diary sheets, barely able to speak. I also opened my mood diary app on the phone. I gave both to her and pointed out that I'd logged my mood religiously, every hour or two, for two/three weeks and reminded her that she'd seen the dated sheet the previous week so her claim that 'I'd only done a few days' was an outright lie. That cemented mistrust and ensured that when they again pressed to discharge me from their care I just said 'fine' because I wanted them out of my home, and out of my sanctuary.

They went, and the very next day I received a letter from them stating that I had chosen to end my involvement with them. Yup, they claimed I had chosen it, despite how obviously upset I'd been when the matter was first raised. I hadn't chosen. They had.

 In respose, I wrote a seven page complaint letter detailing everything that had happened and sent it to my consultant, who had wanted to leave me in Step Up's care. I pointed out that they had wanted to end their own involvement, and that what upset me initially was their threat of removing support I clearly needed. I had not chosen to be discharged, and to receive a letter saying I had added insult to injury, but it appears that my care doesn't matter.

To this day, I haven't received a response, and that was January.

Months later, when I didn't receive the promised follow up appointment with the consultant, my hubby contacted the Community Mental Health Team. It turned out the consultant had left and my letter had gone ignored, but the nurse I spoke to promised to chase it up and have someone contact me.

That never happened.

Roll on yet more months and several Crisis calls, and I've been advised to reprint and resend my complaint letter as no one knows what happened to it even though my hubby delivered it in person so we know it reached them. Problem is, I keep forgetting to do so. I'm also scared to do it, because I'm scared those people who are responsible for assisting me might take offence at my complaint and deny any further help. It's bad enough that, despite several Crisis calls on days when suicidal thoughts have become too much, I still only receive a call from a Community Mental Health nurse every four weeks, and not to help me or ask how things are. They phone every four weeks with the sole pupose of asking if I wish to remain on the waiting list for therapy. 

I don't even have a designated CPN. The nurse who last phoned me from the Community Mental Health Team said the list was getting shorter as people decided they no longer wanted to be on it, but I still have no idea when I'll get any help. That's right, the waiting list isn't going down because the service is efficiently seeing patients, it's relying on people dropping off and slipping through the cracks. Sometimes I wonder if they're hoping I'll slip through the cracks too.

Just like I did in 2012 when I had post natal depression and ran out of counselling sessions

Just like last year when my counsellor decided he couldn't help me before we ran out of my designated sessions*.

Just like I did at university when the counsellor went off of long term sick leave.

Just like I did at fourteen, when the system decided I didn't need help because I understood why I was self-harming.

Just like in 1997, when child services failed to pick up on the psychosomatic symptoms which we indicating a problem was beginning to develop.

I don't feel I have the support I need, and that feeling is so strong that asking for help now seems pointless. It took years for me to push for help, and now it seems a useless endeavour. 

I've stopped keeping a mood diary, because no one's looking at it to see how best to help me. I'm an author but I barely write because I don't have the drive. My self harm is increasing again, as are my feelings of worthlessness and periods of suicidal ideation. I had a shower today and brushed my teeth... for the first time in two weeks! 

The process stressed me out so much it's triggered my anxiety and I want to cancel the reason I showered. My mam and Uncle are coming over to watch Eurovision with me and hubby, but now I don't want them to because simply washing and dressing has left me fraught. And that, combined with my shame at going so long without taking care of myself, is setting off my depression. I need help. More help than pills alone. But I don't trust the services because the Community Mental Health Team sabotaged what should've been a life line.

What is the point in trying to stay afloat when no one is willing to help you fight against the riptide?

What's happened with the Step Up Team and consultant has fed into my lack of drive as far as this blog goes, but ontop of that a girl I've only ever spoken to online saw this blog and decided to go on the attack, telling me I'm self-centred and weak, whining rather than just dealing with my problems. She completely ignored that this blog was discussed with my Crisis workers before I started it because we thought it might be beneficial to me while I awaited other services. This blog exist so I can HELP MYSELF

This is me dealing with my problems. 

This is me saying x, y, and z happened, it affected me this way, now I understand it, I can try to find a way to move passed it in a healthy way. 

This is me saying 'I've hidden this all my life and hiding has made it worse, now I'm going to speak, for myself and for others. Hopefully someone else might see this and realise they're not alone'.

This is me saying it's #oktosay I'm not OK, and although that person's ignorant comments affected me and stopped me posting for five months, I have to do this, because if I don't, I'm letting ignorance and stigma prevail. 

I didn't train myself to face my enemies head on, without crying, even when they were intent on beating me up, just so I could fall at the words of an ignoramus on the other side of the planet. There are bigger challenges to overcome, and so I'm going to write. I'm going to draw. I'm going to share my story in the hope that one day there'll be a happy ending. Not a 'happily ever after', because no one is always happy, but I hope to reach a point when I can be at peace in my own head.

So I'll keep reminding myself it's #oktosay, because the only way to ensure that services are available, that care givers and governments are heald accountable, and that stigma is squashed, is to make sure plenty of voices are heard. 

Sometimes it feels like screaming into a void, like yelling for help in space where no one can hear me or see me in the darkness. The Community Mental Health Team don't seem to care as long as I don't kill myself and become a negative statistic for them. Cuts made by the Conservative government have ensured there isn't the number of NHS staff required to provide a better service. Because of austerity, it's harder to get the medical help needed to survive. 

I'm also in debt because I lost my job due to my illness, and after the stress of sorting out PIP the very idea of applying for ESA triggers anxiety, depression, and self harm. I'm at risk financially, because the government themselves are sabotaging life lines by making benefits unobtainable to the very people they are also denying treatment. Lack of money incresses stress, stress exaserbates my illness, my illness makes it hard to get an income. It's a cycle of despair that keeps dragging me back towards another suicide attempt. 

My life is at risk because these illnesses do kill.  But today I'm still here. I've been cast adrift, but I'm still alive, so hear me yell for a life line.


Pseudonymous Zombie
xxx

*Patients only get 6-12 sessions of counselling or CBT following a referral. How many other illnesses or conditions get a time limit? Been in a severe car accident? We can only operate on you for 6-12 hours. If you aren't stable after that, tough. In labour? If you don't push out your offspring within 6-12 hours, we aren't going to attend to you... Yeah. No. That doesn't happen.

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