(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.

People Are Awesome (sometimes)

(Or: At Home – Day Twenty-Six)

I woke up today and called my care co-ordinator (who, for those of you new to the blog, is an honest-to-god angel and, without a doubt, the best person involved in my mental health care throughout my entire life thus far) – and spoke about the “I’m gaining weight still this isn’t fair” problem.

Her immediate response: “I completely understand, we’ll sort it out. I’ll have a work with the consultant psychiatrist, and we’ll go from there”. I’m now reducing my quetiapine (seroquel, for those who go by brand names) which is, for those who don’t know, absolutely notorious for weight gain. Genuinely, google it. I’m in the position of having gained 40lbs (nearly 20kg, in metric) over the last two years since starting quetiapine, and have never managed to shift it. I’m also taking 800mg of the stuff, which is the highest possible dose, so it’s probably not surprising…

I’m seeing said care co-ordinator in person tomorrow, and am going to discuss it in more detail. However, it makes a nice change from my usual battles with the NHS, and goes to show how much difference a single person can make in a person’s entire holistic mental health care.

Saw my grandmother today. She has just been diagnosed with cancer, for the second time. Pending further tests, remaining quietly optimistic that it might be treatable, but it’s difficult. My grandfather is palpably struggling with everything (and he has congenital heart failure to contend with, too, so is also in and out of hospital). Wish I could be more help, but as my brain is doing its level best to kill me, I’m a tad useless.

Final thing: I have the best friends ever. Ever. Several have clubbed together to get me a new laptop, completely out of the blue, because my current can’t Skype (or do very much, really…) and in their words, should I go inpatient, I’ll need a laptop to Skype them and stay in touch. It got delivered today, and I had no idea (other than suspicions, because bless her, my partner is occasionally subtle as a flying mallet, which I’m grateful for, because if it had been a complete shock, it would probably have finished me off). I cried. It’s wonderful.

So despite a day of mood erraticisms and some difficult circumstances, I’m finishing today feeling exceptionally bolstered by other people. I often forget that I’m really not alone. Mental health can be a lonely business (you spend a lot of time talking to yourself and wondering what constitutes a ‘delusion’, amongst other things) but today, a lot of people in a lot of places have shown me how to be strong, optimistic, loving, surprising, efficient, thoughtful, persistent, dependable, honest, trustworthy. And I owe it to them to keep fighting back, because god knows they’re fighting for me. So I’m trying. Whether it works or not, I’m trying.

My Care Co-Ordinator is MAGIC

(Or: At Home – Day Twenty)

Saw my care co-ordinator again today, and good lord, I love her to bits.

It is incredibly helpful to have somebody who isn’t my partner to talk to. I managed to talk her ear off for a full hour, and went through many of the things that are currently on my mind. She is an absolute credit to the NHS and CMHT; after the absolute nightmare of battling the inpatient ward and the home treatment team, it is an indescribable relief to have somebody who is listening and is helping.

Example: I spoke to the home treatment team, daily, about medication and amending based on my current mood instability. It took nearly three weeks.

Today, I told my care co-ordinator I was having problems with depressive episodes. She took this extremely seriously, and told me she would have an immediate word with a psychiatrist for me to consider options. I’ll be seeing her again next week, and if things have deteriorated she’ll haul me straight into a psych appointment.

I believe her. After all, she broke the CMHT stalemate: after three weeks without progress, she got me an appointment within two working days. I swear to god the woman works NHS-related magic.

And so, with somebody I trust, I continue to wade my way through the strange NHS world of (hopefully) recovery.

OH and myself and my partner have been awarded ESA, which is equal parts fantastic and bizarre. I’m officially on benefits. I find it weird as hell. Means I can actually, you know, live. While not working. Along with my partner. But I’m now on the system, and registered as being ill and unable to work. I’ll try and get my head around that at some stage..

I FINALLY SAW A PSYCHIATRIST!!!

(Or: At Home – Day Eleven)

I SAW A PSYCHIATRIST!!!

It has been a battle spanning several weeks, but I have finally, finally, seen a psychiatrist for the inevitable and necessary alteration to my medication.

So first off, my carbamazepine has been increased to 400mg. This is in the hope of levelling out my rapid bpd-related mood swings, which are usually reactive, and while I’m in a hypo/manic episode are particularly extreme. My psychiatrist noted that if this is extreme emotional dysregulation as an effect of bpd then the meds may not help much, but I’m hoping hard that it helps temper my current mania, which would have a knock-on effect on my overall mood stability.

I’m also going to stay on lorazepam for another week or so to help with sleep, then tapering off. After all, we don’t want me on benzodiazepines for extended periods of time. Fun fact though, while we’re here: I was on 4mg/day for nearly three months (!) which is basically against every single guideline you can imagine for lorazepam. I worry about how this even took place, but I must admit that the psych I was seeing at the time wasn’t exactly on the ball…

Still haven’t heard from the treatment programme, and I’m getting worried. I’d hoped to have heard by now. It worries me, and saddens me, and I really, really want this to work.

So a very successful day overall, but still with some lingering worries…