Battling the NHS. Again.

Of course, unsurprisingly, my optimism from yesterday has been somewhat punctured.

Because: I am not seeing a doctor tomorrow. The Home Treatment Team, whom I am beginning to foster a quiet hatred for, fucked up. Again. There seems to be a rule that nobody from shift to shift actually bothers to talk to each other. Every single day, for the last week, I have asked – with varying degrees of desperation – to see an actual bloody doctor.

The reason is very simple: my medication is wrong. I know this, because I was put on a new medication (carbamazepine) and was told it would be adjusted every three/four days until it reaches a therapeutic level. That was three weeks ago. I am still on 200mg (which is basically nothing for this drug).

HOWEVER: My care co-ordinator, whom I am conversely fostering absolute adoration for, has managed to swing it so I can see a psychiatrist next week. This is despite not having been discharged formally from the Home Treatment Team, so she’s basically doing me a huge favour.

So ups and downs (haha) but at least that element is going well.

The element that isn’t going so well is the impact this is having on my partner.

I currently have to be monitored 24/7, or I do myself damage. Quite seriously, I nearly scratched half my arm off because I got upset earlier today. The people who monitor me are my parents, or my partner. Mostly the latter.

This means I feel horrifically vulnerable, and guilty. I am being a huge imposition on my partner, and I know that. She did not sign up for this bollocks. Having a girlfriend with bipolar, bpd and bulimia is a hell of a lot for any single person to handle, and she has to cope with me and keeping me alive/unharmed.

There is no real answer to this.

It just, like so many things about living with mental illness, really sucks.

A Ray of Hope!

(At Home – Day Six)

Success! The battle of me vs the Home Treatment Team continues with what appears to be a victory.

  1. I should be seeing a doctor by the end of Friday.
  2. I am being discharged from the Home Treatment Team, and into the loving care of my wonderful care co-ordinator, whom I am extremely fond of.
  3. I will be seeing another psychiatrist next week (theoretically) for a full medical evaluation, where I can discuss my medication in more detail.
  4. I should be assessed by the complex needs team in the not-too-distant future.

In the meanwhile, I am eagerly awaiting a response from the longterm treatment programme I am looking at for bpd and comorbid eating disorders.

Altogether, the best steps forward since all of this began. I am feeling genuinely positive, which is a hard thing to feel when in the hands of the CMHT. My mood is staying just about stable, for now, and I’m coping. This is despite the scorching heat of the UK and my terminal inability to deal with hot temperatures without wanting to commit mass homicide!

Keeping on going, one day at a time…

Me vs CMHT. It doesn’t go well.

And so I enter the epic battle of me vs the community mental health home treatment team.

Short version: I need a medication adjustment. I really, really, really need a medication adjustment. I have Type One Bipolar, am currently entering a manic episode, and I am on insufficient medication. I was placed on a new medication (carbamazepine) which was supposed to be tapered upwards every three/four days to a proper therapeutic dose; along with the general uselessness of the inpatient ward, they failed to do this. They drugged me with benzodiazepines instead, and hoped that would be sufficient.

Today, I phoned the home treatment team a grand total of eight times. My mother called another dozen or so.

I was told at 9am that I would be phoned back regarding seeing a doctor. This never happened.

I called back later. They said the same.

And again.

And again.

And again.

Now, I also had a very important psychiatric assessment for an inpatient programme for bpd and my comorbid eating disorder. The treatment team KNEW about this appointment, at 11am, so they would have to visit me AFTER 1pm. Did this message get passed on? No. No, it did not.

So, the home treatment team visit got indefinitely delayed. Eventually, at 6pm, somebody deigned to show up.

I never got any info about seeing a doctor, let alone (haha) actually seeing one, which I was told would happen today by the team who saw me yesterday.

THIS IS GETTING ABSURD. IF I DO NOT GET MEDICATION ALTERATIONS I WILL END UP INPATIENT AGAIN. THIS IS NOT OK. THIS IS MANY SEPARATE LEVELS OF NOT OK.

And, I got info from my care co-ordinator, on the down low, that the team may genuinely try and DISCHARGE ME TOMORROW. Which makes zero sense. Bear in mind, here, that I am under 24/7 guard from my partner and parents, who keep all sharps and medications in a safe so I can’t do myself damage.

Tomorrow, my mother and I are on the warpath. Formal complaint time. If I don’t see a doctor by the end of tomorrow, I swear to every god ever invented, I will destroy people.

Wish me luck.

Discharged. The Aftermath.

Over the last few days, I’ve posted up the documentation I have from my time on an NHS acute inpatient ward; I have now been discharged into the community, and am under the temporary care of the Home Treatment Team. They come daily to assess and check up on me, now I have been discharged.

I want to quickly go over the basics of the inpatient ward. They were grimly insufficient on every possible front. I left my time inpatient far, far worse than I went in.

  • My bulimia reached epic proportions. I did not keep down a single morsel of food for the ten days I spent there, and lost around a stone in that time. I am now trying to go through refeeding, and can stomach very little before experiencing spearing stomach pains and occasionally vomiting.
  • I was basically drugged up to the eyeballs on benzodiazepines for the duration. They, as a rule, do not discharge patients with benzos. So I essentially went cold turkey on them.
  • My mania (which has been mounting for several weeks) was not treated. I was sedated, but my medication was not properly addressed. I am now, a few days into home treatment, going sky-high mood-wise…
  • There was nothing whatsoever by way of therapy, occupational or otherwise, so basically all the patients milled around doing sod-all for the duration of their stays bar smoking.
  • I was not watched. I left hospital with horrific self-injuries which were not there when I started. Nobody seemed to notice.
  • I was able to access contraband pretty much whenever I fancied, barring – bizarrely – my phone charger, which was the only thing I didn’t retrieve. Pencils, pencil sharpener, deodorant, money, all the rest: I had whatever I wanted, and could do damage accordingly.
  • The staff were overworked.
  • The consultant was a blithering idiot who decided, completely without reason or explanation, that I had an alcohol problem. Definitely in his own world, that one.

So altogether, it would take a small army to force me back onto an acute inpatient ward, ever. Ever. It was a hellish, nightmarish experience which will haunt me for a very long time.

This is what constitutes acute mental health care in the UK. This is so grimly insufficient I cannot even begin to fathom it. There are people in ostensibly worse situations who don’t stand a hope in hell of getting well in any meaningful way, or for any meaningful time.

I now place my faith in the home treatment team, and my care co-ordinator, and hope they can do better…

Acute Inpatient Ward – Day Ten

I am definitely on the wrong combination of meds. I will be demanding to see a consultant psych at the earliest possible opportunity. I’m heading so manic I can see stars for fuck’s sake, I need an actual mood stabiliser.

Meanwhile, woman shrieks about God

I want to cry, really badly, but can’t.

I’m disconcertingly angry. I’m everything and nothing. I want to murder the fucking moronic fucking psych who got this wrong. But it’s fixable, which is what matters.

Carla* basically keeps stealing people’s clothes and washing them or occasionally binning them.

My mother should have been able to visit today but couldn’t, the loneliness is killing me and I don’t know how I’ll cope with longer term inpatient, I’m feeling very scared and very unhappy and yet I’m being released so I’m delighted about that. I don’t know what’s going on and I hate my partner passionately right now. She won’t understand.

Acute Inpatient Ward – Day Nine

You can’t make this shit up.

Just had Carla* knocking on my door, asking to come in. Apparently I am number fourteen, and therefore I am the girl who will open the door. Otherwise, we will age forever, I will be trapped here forever. She offered to give me something to remember this moment by, and I promised her (very honestly) that I would not forget. She asked if I remembered Uncle Charlie. Apparently this shows that I’m one of them and will age and die here forever.

Jesus.

We’ve also had a patient attack the staff, bloody nose and all. I binged on five fishfingers and enough potato to deck a horse, went to purge midway, the staff only noticed that I’d left my phone behind and that was probably a worry.

I’ve moved on to singing at the top of my lungs and hoping for the best.

See a world, beautiful and strange, spinning off somewhere…

I have had a hell of a day. My anxiety is now completely gone, of course: we have a pathway, and a plan, and I am being discharged on Friday. It is now Tuesday. Now to pass the boredom of the next few days!

*name changed for anonymity purposes

Acute Inpatient Ward – Day Five

Happy Birthday to me.

It’s not a fun experience, to celebrate on a psych ward: realistically, you simply do not. The day trickles by precisely the same as those before and inevitably after it. It is boring and feel rather pointless, but you live and you breathe and hope that next year will be different.

On Monday, I will have a meeting with a care co-ordinator who will be the person assisting in the referral to a new unit. I genuinely believe I have a reasonable chance of acceptance, but funding remains a concern. I am under orders to stop fretting about it, and concentrate on getting well.

The problem being I have no clue what ‘well’ is.

I have been using the treadmill daily for over an hour, until my feet blistered (literally) and my calves have seized. They hurt like a sonofabitch. I have chosen today as an eating day – and recovery day for my confused limbs – and tomorrow I intend to simply not eat for a day and see what happens. It is part thought experiment, part boundary pushing, part clinging steadfastingly onto one of the most obvious markers of being ‘ill’.

Once you’re in the madhouse, you feel sane, because everybody else seems less sane than you do. Introspection is a struggle at the best of times, let alone when you’re comparing yourselves to others and, for once, finding yourself remarkably well balanced.

This does not factor in the self harm, the exercise abuse, the raging bulimia. This does not factor in the terror in your head and the speed of thought, and the sense that if you stop doing something, anything, writing or reading or colouring or tidying or something then you’ll simply cease to exist. If you’re not worrying about your future, that you won’t have one.

I try very hard to remain rational, but there is a disjunct between what I think and what I feel, and those work in separate spheres. I cannot affect how I feel whatsoever, and so when I am ill, it becomes my puppet master. Each thought is shadowed by emotion and, terrified, runs amok and I can’t even begin to bundle them somewhere safe until the storm is over, partly because the storm can last for weeks. A manic episode makes every thought sprint through the streets and I, naked and cold and in quite a lot of pain, tiredly ask them to kindly slow down because if you just listened, you’d realise you are being irrational and normal life can start to emerge once again.

I’ve never been a very good runner.

Spoke to a nurse, who is one of the types who genuinely cares about their patients. This one is called Sarah. A tall motherly type of woman, blonde, wears a nice dress and exudes a type of comforting familiarity. Knocks on my bedroom door and walks in while I am mostly asleep, wants to catch up a bit, see how I am.

I talk a good game for approximately three minutes, before the cracks – so large you can drive trucks through – become laughably apparent. She notes that I always seem bright and bubbly, that maybe it’s a facade, and I agree while laughing with tears polluting the corners of my eyes, unbidden.

  • I am bulimic, and throwing up every meal.

  • I am terrified about what will follow discharge, either
    1) Inpatient, which is frightening because I will lose my entire life for a very long time, or
    2) Home, where I think I’ll be dead within six months.

  • I am unable to deal with stress or fear, and keep destroying my arms and legs with scratching.

  • If I leave the hospital, despite technically having leave, there’s a good chance I’ll step in front of a car.

  • I am really rather suicidal at the moment.

  • My impulsivity is scary.

  • Second-guessing yourself at every turn is exhausting.

  • I don’t know how I feel.

  • My mood is swinging so fast it’s making me feel physically sick.

When she left, I cried for a solid ten minutes, unable to breath.