(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.

Apathy

(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.

New Medication Developments

(Or: At Home – Day Fifty-Three)

I do not have much by way of mental health progress, though I wish I did.

The main point of interest right now is that I spoke to the GP regarding options for my weight. Now let’s be clear: I’m not obese, by any stretch of the imagination, but I am overweight. I am also extremely unhappy about this fact, and it has a huge effect on my mental health. The GP is prepared to prescribe me orlistat, BUT I cannot take carbamazepine (or similar anti-epileptics) at the same time.

So, I am considering options. My mood is unstable. I’ll be seeing a psych soon(ish). I intend to discuss coming off carbamazepine – which to be honest, I’ve not been wildly keen on – and considering alternative medications. I want to stay on quetiapine. The only reason I’m coming off it now is because of weight, and if that is negated, that’s a whole separate kettle of fish. With my mood this unstable I’ve been extremely frightened of reducing my quetiapine, so staying on that would be absolutely ideal. I’m also interested in looking at aripiprazole, which had nasty side-effects when I was younger, but was regrettably a very effective drug.

Many things to think about, and will be simpler when I see a psychiatrist. I have a fairly solid idea, though, of what I think would be best. It’s now a case of waiting, thinking, and sleeping on the idea. Impulsive decisions would be a bad idea, esp when considering very serious medications.

We’ll see.

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.

Out of Hope

(At Home – Day Forty-Nine)

I feel utterly hopeless, deflated and intermittently suicidal. I don’t see that this will ever improve. I don’t feel like I’m ever likely to get anywhere sensible. I have no trust left in anybody in the mental health system, and I have mental health problems that will never go away. This is it, for me, and if it wasn’t for my partner I would have thrown the towel in quite a long time ago.

Sorry. Not much joy over here.