Trying To Cope

I am stupidly pessimistic today. Saw the GP but don’t have much faith that it’ll achieve enormous amounts, she’s going to call my care team and ask why they won’t refer me, but I’d imagine they’ll talk their way around it.

I’m trying to hold off on inpatient as long as possible. I am going to my partner’s dad’s house for a couple of days (Fri-Sun) then straight to my friend’s house (Sun-Wed) then my parent’s house (Wed-Fri) and I’m supposed to be doing an aerial class on the Saturday and then, then I imagine I’ll collapse like a bad souffle and off I pop to acute inpatient.

If I last that long.

At the moment, I don’t feel like I’ll make it to the end of tomorrow.

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Considering Options

Today has been a better day.

It’s not amazing, but it’s definitely a start. I went to a flexibility-based class and that was fine, and saw my mother-in-law (almost), her partner, her brother and his girlfriend, and her parents. So some new people, but very relaxed and really nice to meet them. It was excruciatingly hot, but I coped. #copingwin

I self-harmed yesterday quite badly for the first time in a little while. In slightly less positive news.

I’m struggling with what to do, and how to get what I need. Let’s unravel this a little:

  1. I want to go onto an inpatient programme. This is because I’ve spent around 11 years in various form of outpatient, both intensive and otherwise, with very little impact. I spent six weeks in an inpatient ward two years ago, and that was the only thing that really has made any headway. Plus it was compounded by 1:1 DBT, which was undoubtedly helpful.
  2. The NHS are extremely unwilling to fund this.
  3. They want me to go through the rigmarole of the Complex Needs Team. They primarily offer MBT (which I’ve done before), psychodynamic psychotherapy (again, done) and cognitive analytical therapy. This is not to say they won’t work; rather, I’ve DONE OUTPATIENT FOR ELEVEN YEARS WITH NO EFFICACY so FORGIVE ME, but I think inpatient is a far stronger option.
  4. I cannot be left alone, at the moment. Eventually my partner is going to go back to work. And I am self-harming with her in the same room as me. I’ll last about twenty minutes on my own. I’m terrified of being looked after by my parents because I know full bloody well I’m going to get worse, and there’s nothing anybody can do about that.
  5. So, shortcuts to getting the NHS to agree funding. There aren’t many. I am going to talk to my GP to discuss my concerns, but I tremendously doubt there’s anything they can do.
  6. I personally reckon it’s about a week or two before my brain plummets me straight into acute inpatient. Which is a separate issue, but might play into the inpatient argument.
  7. Or I’ll end up in A&E.
  8. I DON’T KNOW WHAT TO DO.

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.

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.

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.