Unmitigated Disaster

(Or: Acute Inpatient, Take Two – Day Four)

Today was an absolute unmitigated disaster.

Let’s contextualise. I asked my mother to make some difficult phone calls, starting with the head of the care coordinator team, to more or less fire my current care coordinator, discuss when Complex Needs will get back to me, and ask about interim care.

Meanwhile: my care coordinator arrives. Is very sweet and caring but absolutely ineffectual. Learned some interesting things though.

I later have a meeting with the consultant psychiatrist. The same one who reduced me to tears last week. I was told that I would be discharged on Wednesday, REGARDLESS of whether or not I felt safe enough to do so. I was told in no uncertain terms that I would not be here long, and while it may get reassessed, I’m out of here come Wednesday.

This did not go down well. I started crying.

To add insult to injury: I am told there is a patient who is very sick, and would I move wards. Where to, you ask? Why, to a low security OCD ward. I am not OCD. I’m suicidal. I say no. But it really does prove just how much they want to get rid of me.

My partner arrives, and I have a full blown dissociative seizure. Screaming, crying, convulsing, the works.

Now my timeline gets odd, because I was having a seizure. I was dragged across the ward, publicly, while screaming and convulsing. The consultant knew, and saw me, and thought it appropriate to do absolutely nothing. I was taken away from my partner who is experienced at helping me through them. I was left alone for an extension period of time and completely ignored. Battered myself extensively on the head and scratched my arm severely.

Meanwhile: my partner calls my mother. She calls the ward, and convinces them to let Sarah back. I have to get myself to a neutral room – again around the ward while hysterical – and she calms me down. I speak to an absolute wonder of a doctor who listens – bear in mind that I have no filters and I’m ridiculously upset – and get written up some lorazepam. I calm down. My partner calms me down. All is OK.

Except that it really fucking isn’t, at all.

I’m not upset about the discharge date, per se. I am ridiculously upset that nobody has been listening. I tell him I am suicidal and he still thinks it appropriate that I would leave so early, even if that hadn’t changed. So I am unsafe. Even when I thought I would be.

Random extraneous knowledge from today:

1) Despite multiple conversations to the contrary, I’m going to be assessed by the young group in Complex Needs (16-25) which we’d previously agreed would be entirely wrong for me.

2) The lead psychologist for Complex Needs is on leave for several weeks, so God knows when they will get around to assessing me.

3) There is a psychologist, somewhere, who is developing something for interim care before Complex Needs gets around to it.

4) My blood pressure is scarily low and nobody has done much about it.

5) My face cream hasn’t been written on my charts. I’m not allowed to use it. Problem ongoing. Argh.

6) I have asked at least a dozen times. But it appears that the Complex Needs team are the only people who can do Tier 4 referrals. That’s right. Everything I’ve fought for rests in Complex Needs.

If it weren’t for my family and fiancée I just don’t know what I would do. They have been extraordinary and continue to be. With them around, I know they will make things happen. They will get me there.

I’ll be OK.


A Good Day

(Or: Acute Inpatient, Take Two – Day Two)

Today has been one of my best days in quite a long time, much to my own surprise. I honestly thought it would be horrible – based on both my mood, location, and that my fiancée wasn’t going to be able to visit – but I actually had a positive day. I didn’t cry! Not even once! And recently I’ve been sobbing hysterically at least twice a day so this is HUGE for me.

My parents visited, first off, and were really lovely. I can tell my dad isn’t coping well, but he has always found mental illness really difficult. And seeing your daughter on a psych ward for the third time, with intense suicidal ideation, must be horrendous for any parent. My mum is the joking one, and I felt able to laugh, so time passed quickly. They brought me a portable DVD player (!!!!) and DVDs to pass time. Which is awesome. They also brought some nice food things, because hospital food sucks.

On that: I still have not thrown up! My compromise has been that I’m eating very little. I know it’s not a perfect compromise, but it’s that or fall headlong back into bulimia which I’m just terrified of doing. My mood is terrible enough without adding vomiting to the mix. Again. So I am severely undereating but will deal with that later.

To my surprise, another very close friend of mine – codename cannon fodder, for a variety of reasons – unexpectedly visited after my parents had gone. Hugely fun. Somebody who’s seen enough of people in varying states of vulnerability to be utterly unfazed by anything, and still have a wicked sense of humour.

In other news, was offered legal work pro bono. And I mean as a lawyer. I declined by virtue of not being a lawyer.

So overall? Really positive day, and this hospital experience isn’t seeming quite so purgatorial.

(Now if I could just kick the constant desire to kill myself…)

And so it begins

(Or: Acute Inpatient, Take Two – Day One)

Look at that. A new countdown.

Well, I am on a ward. No idea how long for. I had a frankly disastrous conversation with the ward consultant psychiatrist, who I’m debating lodging a formal complaint against. The man was unbelievably cruel and showed a complete lack of empathy when I was clearly very distressed. I was told that there was nothing anybody could do about the bulimia so ‘don’t throw up’. I’m not kidding. Same response to self harm. I was told that I am here to ‘wait until this passes’ and otherwise refused to talk about my further treatment outside of hospital or on discharge. I was patronised about medication decisions that have been made with my GP and usual psychiatrist, and made to feel stupid. I ended up hysterically sobbing, and I do mean hysterical. Another nurse came in and told me he probably didn’t mean it to come across that way, take it a step at a time and come eat dinner.

I responded about as well as you’d imagine.

I am vacillating between ideas on how to respond. I don’t feel able to fight this in the way I need to. It requires a fuck of a lot of time, organisation, tenacity. It’s a full time occupation, and I can’t do it, as my primary occupation right now is not dying. Nobody is listening to me as a patient, and I can’t, it’s killing me.

So it falls to my fiancée. Who has a life of her own. Who does not have endless time to devote to this.

And if I’m completely honest, I am frightened of letting her do it. I am used to being in control. The only person I relinquish control of things like this to is my mother, and that’s because I’ve grown up watching her take on situations like this and win without question. My fiancée is new to this game, and I’m worried she’s not going to do it right. And I loathe myself for saying it because it sounds like I don’t trust her and I do, I truly do, but I also want her to go have a life that doesn’t revolve around my illness.

I’m still excruciatingly suicidal. The immediacy ebbs and flows, but it’s still there, cancerous.

To my credit, haven’t thrown up yet. Get me! I’ve had the opportunity, but haven’t, so go me, ladies and gents, I’m still here and I’m still fighting.

For now.

Still Fighting (but fuck it’s unfair)

(Or: At Home – Day Sixty-Eight)

I am back home in London, after my few days of holiday up in Liverpool. I had an unashamedly wonderful time – just for a while, it wasn’t about my illness. And just for a while, I wasn’t a ‘problem’.

However, there is the kick-back. I am exhausted, mentally and physically, and I really have no words to explain exactly how exhausted I am; it’s like nothing I’ve ever known. Today I found some words for it, in trying to explain to my partner: currently, I am holding onto my sanity with all of my strength, like one would a lifeline. It would be substantially easier to just let go, because holding onto it saps everything in my body and soul, but I’m also dimly aware that I could die if I did.

The whole Tier 4 bollocks is just so much to handle. Today I (well, my partner) phoned Mind (mental health charity) who passed us onto their legal team and they have given us the names of local care solicitors. It’s all getting rather serious. But I am legally able to challenge an assessment (woop) so all is not yet lost.

I am seeing a psychiatrist tomorrow to handle medication. I will be staying on quetiapine (I started to reduce dosage, with hilariously bad results, so I’m back to normal now) but need a new stabiliser and/or antidepressant because I’m suicidal and self-harming again. I need to emphasise that I do not want an anti-epileptic, because it would contradict orlistat, which would be my next step: weight-loss medication is a serious step, but I can’t risk coming off quetiapine which is making my weight soar.

Then, we discuss Tier 4. Depending on that, I see my GP for support in challenging the assessment.

Progress. But fucking hell, I am so fucking tired of fighting a system that is supposed to help people like me, people who are holding onto their lives by the skin of their teeth, rather than making them into desperate messes who have no autonomy and depend on the people around them utterly to keep them from oblivion.

It’s too much, and I am so lucky to have my partner.

Without her, I would be dead by now, and it is so fucking frightening to know that.

(Yet Another) NHS Battle

(Or: At Home – Day Sixty-Three)

Today has been one hell of a day.

My care co-ordinator called. The psychiatrist won’t review my case regarding Tier 4 care. And won’t see me until September. The complex needs team might get back to me at some point in the next ‘few weeks’. And there will then be a waiting list. So I’m not going to be seeing anybody for any form of therapeutic care for another months. At least.

I hand the phone to my partner, because I am holding back a complete breakdown there and then.

My partner and I are more or less threatened that, if I do not manage my care myself, there would be serious repercussions for my ongoing mental health care.

A lot of things then happen very quickly. I had to call ‘Mind’ for advice. I threatened sitting in the local psych hospital, or indeed my local A&E, until somebody saw me. Things got unpleasant.

HOWEVER: I have now got my partner officially put on my records as my advocate going forward, because it’s causing me extreme emotional distress to try and cope with my own care plan. I sent an absolute HOWLER of an email, which should have scared them shitless. I also have an appointment for next Wednesday, which is just hilarious – if you’re insistent enough, appointments MAGICALLY appear…

I cannot believe how impossible it is. I am constantly, CONSTANTLY battling the NHS, and I don’t have the energy for it. Not when I’m also trying very, very hard to simply survive with extremely serious mental health problems…

Anyway. I also had an incredibly helpful conversation with my partner last night. We’ve discussed all of the current pressing issues, and formed a lot of new ways to try and help get through things as they are. It’s overwhelmingly positive, and I do feel so lucky to have her – even when things are at their worst, I never stop loving her. Sometimes I feel like all of this is too hard to see the other side of, but she never fails to surprise me with her patience, and her faith.

I just wish I wasn’t so fucking tired.


(Or: At Home – Day Fifty-Nine)

Today was lovely. Saw my niece and played in a fountain (no kidding) which was really fun, although I’m utterly shattered now and I still feel like my life is happening to somebody else.

Tomorrow is another week. Another set of battles. Trying to see a psychiatrist, getting my benefits sorted (as they’ve been stopped and I can’t understand why, I sent the stuff they needed over a week ago) and getting my written assessment report from the inpatient unit I’ve been rejected from and getting funding and doing my normal life and aerial and oh dear god I’m out of patience and I don’t want to do any of it any more, I’ve lost all possible impetus and drive.

Apathy is remarkably all-encompassing.

NHS Incompetence Strikes Again

(Or: At Home – Day Fifty-Four)

After a day of my partner calling up various parts of the psychiatric services, and MIND charity, and a few other places, we discovered that the situation I’m in should definitely not exist and I’ve been fucked about. It’s nice to hear, as I was beginning to doubt myself. My partner called the team leader of the care co-ordinators, and long story short we know what’s going on:

The psychiatrist makes the call regarding funding, and that is the current issue. Apparently while I was in acute care, the psych in charge of my care deemed me a good candidate for inpatient care and funding. The next one I saw, after discharge, decided otherwise. So, I have to convince her that I’m a good candidate and it would help me. That ought to be fun.

I’m also going to ask to return to aripiprazole, and come off carbamazepine. Aripiprazole helped with the depression in addition to the mood stabilisation, and carbamazepine appears to be doing fuck all. I also intend to remain on quetiapine. I don’t think I’m in a stable enough place to risk fucking about with my primary mood stabiliser.

I am feeling truly, hilariously shit at the moment. The whole situation has left me feeling completely disillusioned and fucking miserable. I am, in person, very verbose and with a fabulous cut-glass British accent that makes most people (seem) to think I’m a whinging upper-middle-class white girl with very little wrong with me. On paper I look a fairly obvious candidate for help, but the moment I talk people listen to how I talk rather than what I’m actually fucking saying.

So fucking fed up it’s unreal.

My partner needs to go back to work, we can’t afford her being a 24/7 carer. I managed to self-harm with her in the same room as me. So when she eventually has to go, I’m going to be on my own, and I don’t know what I’m going to do.

As it is, my partner has a training course starting in September at the opposite side of London. This has many problems. One aspect is that, for travel purposes (and affordability, and safety) we are going to be staying with my parents. I have a very difficult relationship with my family, especially my mother, and this is so not a good thing. I also have group support sessions three times a week at my side of London, and I can’t really travel or be alone at the moment, and my mother has already said she’s not prepared to commute. I have no clue how to work around any of this. Other than fall on the perpetual mercy of friends, which makes me feel like a constant burden and general imposition on other people’s lives.

I’ve already noticed people pulling away from me. They don’t do it on purpose, but nobody wants to talk about their problems or their lives with me, because they don’t want to put any stress on me when I’m vulnerable/struggling. But to be honest, I just wish people would talk to me. About their problems, about their jobs, about how shit their lives are. Anything. Absolutely anything. I am so lonely, and feel constantly betrayed by the people I’m supposed to be able to trust professionally.

I fucking hate the mental health services in this country.