(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.

Things are Getting Ridiculous

(Or: At Home – Day Sixty)

I can’t get through a day without somehow bickering with my partner, and I don’t know why. It feels like every conversation somehow ends in misunderstandings, or miscommunications, or general temper snapping, or sulking. The temper snapping is mine, the sulking is hers, but good sweet lord I am fed up of arguing about stupid shit.

There’s a sense of inevitability, in some ways. Humans are not supposed to spend this much time in constant, 24/7 company. We do well, under the circumstances, but the circumstances are shit.

I am really unwell. I self-harmed the other day using a folded up milk top, and if that doesn’t speak of desperation, nothing does. I am so fucking done with everything in the mental health services, while what remains of my sanity continues to drip further and further down the drain.

Don’t know what to do.

Arghhhh

(Or: At Home – Day Fifty-Five)

Slammed a heel today during a very inelegant fall in aerial and I’m reasonably sure I’ve bone bruised it, as it hurts like a son of a bitch, so that’s fun. I am having a lot of fun with aerial, but I’m bruised to hell and back.

Managed to meet up with a good friend of mine and had a good chat.

Otherwise not much by way of developments. My mood is pretty low. Overall, I definitely feel like I’m plummeting. The sensation of hopelessness that’s been spreading since the discovery that I really can’t fucking trust anybody in the NHS has now sunk marrow-deep and will not leave. I just can’t be fucked any more. I don’t care. I am so tired and I am so, so done with all of this – and I don’t have that option, I have to be doing everything myself.

People don’t seem to get just how fucking tiring it is, to be mentally ill. I can hold conversations, socialise, go out. I can. It’s physically possible. I have just got so used to being so tired that I don’t even notice it any more.

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.

Going Backwards (lucky me)

(Or: At Home – Day Fifty-Two)

At my worst, I experience dissociative seizures. These are the bastard child of a panic attack, and an epileptic seizure. I dissociate heavily, spasm, scream, cry. It’s a nightmare. Haven’t had one in a couple of months…

… until last night.

They’re back.

So overall, understandably, I feel like my health is going backwards rather than forwards. I sent a strongly-worded email to my care co-ordinator today (Sunday, so will be actioned tomorrow) expressing everything that is currently wrong and detailing the places I wish to be referred to. I am out of patience, and I’m running out of time. I fear that without stability, I’ll be back in an acute ward before too long, which I’d really rather avoid (for reasons why, see my earliest posts; acute inpatient was horrendous).

Help.

Losing It

(Or: At Home – Day Fifty-One)

I feel like I’m threading my life together with the finest of threads, and nobody except my partner is even vaguely listening.

My care co-ordinator is a liar, as discussed. I’m also musing on how, in two weeks, I’ve gone from ‘definitely fitting criteria’ to ‘unlikely you’ll even be assessed’. I don’t understand that gap.

My parents are linear-thinking people who cannot understand the MASSIVE area between ‘well’ and ‘unwell’ and ‘desperately coping however I can’.

I’m fed up.

What is Life

(Or: At Home – Day Fifty)

Started a personality disorder support group today which was – wait for it – actually really helpful!!

I know, I know, the shock of me positive might finish you and myself off, but no genuinely. It’s a weird environment, but I think it’s one of those ones where you get out what you put in. I intend to start going as a point of regularity and importance. You never know, it might do some good.

Spoke to my lying care co-ordinator. I’m less inclined to actively murder her now, which is good, but I’m still pretty pissed off. The lack of response from my assessment she flat-out admitted was her fault – the email got sent to the wrong person, but she still could have dealt with it – and refused culpability on the lying front. She didn’t deny lying, though. Is evidently not keen on referring me to other treatment places, but fuck that, she’s my care co-ordinator and I want to be referred SO hopefully there will be some progress. If I haven’t had written confirmation from her by next Tuesday that I’ve been referred, I’ll kick off. Again.

It is so fucking boring to be in constant mortal combat with the people who are supposed to be helping me.

Oh, and I need to see a psychiatrist (because, you know, suicidal thoughts and transparent mood instability is a bad thing and reasonably urgent, FOR GOD’S SAKE IS THAT NOT OBVIOUS) which will hopefully happen next week, but amazingly, there is only one psychiatrist in my entire area actually working for the next fortnight. I appreciate that holidays happen in August but Christ almighty, did nobody think this through when GRANTING holiday?! I worked in an opticians, as a fairly low-placed salesperson, and wasn’t granted holiday leave over CHRISTMAS when the place was DESERTED because other people got priority because PRIORIES ARE IMPORTANT IN PEOPLE-SERVICE INDUSTRIES.

Is this just me? Or is this just an amazing, extraordinary institutionalised ineptitude that seems to hit me at every single one of the worst possible moments?

And my grandmother is starting chemo, and I’m not allowed to tell my parents (because they’re estranged and both sides would probably murder me).

*headdesk* sometimes my life feels like a comedy sketch in motion.