Into the system…

blogging, work, mental health, therapy, disability, benefits and more…

Archive for January 2010

Found Again…

with 20 comments

So this time I’ve been found by my NHS team! Eep!

It seems that the odd slip with references to the hospital I am in and the local NHS trust means someone has put two and two together and for once, sadly got four. I’ve been told that someone on the CMHT reads mental health blogs (presumably Mental Nurse) and came across my blog, spotting a reference to this hospital. Of course with knowing the trust and what ward I was likely to be on, they realised who I was talking about. So the URL was passed on to the team here and they presumably quickly identified me.

I am annoyed at myself for leaving too many clues. It may have been easier if I had been more careful. We all could have carried on in ignorant bliss and not had to consider the consequences, but what is done. In some ways maybe it is just better that things are in the open.
I found out that they knew yesterday in ward round, but I was so shocked that I didn’t really know what to say or ask. I met my consultant again today so we managed to discuss it a little further.

My consultant says she has read very little, but I do not know how much has been read by others. She consulted the Trust’s Communications Team and her union for advice. The Communications Team can’t really do anything. I have not been libelous towards the trust and they agree that because it is a public forum I can pretty much write what I like. I suspect I may be monitored for a while though just incase I say anything they object to. The union suggested that ethically my consultant should respect my anonymity and discontinue reading. She agreed that as it was not written for her she doesn’t think it is fair for her to read it. I think I trust her on this. She seems fair.

Apparently a *lot* of people know about it, but only my medical staff actually know it is me. Nothing will go in my notes, other than mention that I do have a blog, which was in there already, so future doctors are unlikely to know.

It seems that my blog is gaining notoriety within the trust though. I wonder how far the gossip mill will spread. Before I know it, my GP and god knows who else might find out. Too late now to worry about that. Will come to it as it happens.

I do not really know what I am to do. I have removed a few obvious references including any mentions of this Trust’s name or the hospital, but without rewriting the whole thing it would be hard to hide everything. The thing is, most of my blog only means something if you know me and my story or the places and people involved. I don’t use full names, so it is not like I could be easily googled. The average person reading would not know or care who Dr N, Dr M or DP really is.

I don’t really want to stop writing and see little point in becoming even more anonymous or censoring things. It has been suggested I may want to lay low for a while so that this can blow over, but I am unsure. I could go password protected for a while, allowing me to keep my posts for trusted parties only, but I don’t know if I really want to do that either.

My consultant wants me to think about the future and how I would feel if this happens again with a different group of people. Of course thinking about the future is not something I’m all that good at right now, considering I tried to end it all a couple of weeks ago, but nevermind. Her concern is I may not be too bothered now, but maybe if it came up with future employers or whatever, how would I feel then? I don’t know. I have pondered this a lot in the past. My instinct is that I should not be ashamed and should not hide. To do so only reinforces mental health stigma that you should not talk about these things. I am also not sure hiding multiple hospitalisations for mental illness would be that easy anyway. It would probably come out eventually so if it is this way, then so be it.

I do need to think about it. I am not ashamed of what I write. I know that my blog is appreciated by a wider audience these days. Recognition from Mental Nurse and OneinFour tells me that this is worth doing, not just because I find it therapeutic, but because people want to read what I have to say. I also think that mental health blogging is becoming a new force in the world of mental health and I want to remain a part of that. I like that this blog gives me a voice. Mental health patients so rarely get to say what they think. It often feels like we aren’t trusted or respected enough to have an opinion. The system is flawed and those of us that can, need to say so, or change is never going to happen.

I still haven’t found any definitive conclusions. Anyone reading have any thoughts?

I don’t think I’ll have my phone again for a little while so I don’t suppose I will be writing much anyway but I don’t know what is going to happen. I am getting more escorted leave now as they want to encourage me to see that there is a life out there, but they are keeping the safety net of the ward in place whilst I am still a risk.

For those of you wondering how I am, I am surviving. Feel like I’m in autopilot a lot of the time and struggling for the rest of it, but the days are ticking away and I am still here. I have to admit I’ve been considering plenty of ways not to be, but they have most bases covered here. Progress is slow at best or perhaps even nonexistent, but I think people here are trying, considering the very limited options available to them.

p.s. If you are reading this and related to the trust, hospital or CMHT then I would appreciate it if you leave, but I understand that it is up to you. You could of course join in the discussions going on here and elsewhere in the mental health blogosphere rather than just snooping on me!

Written by intothesystem

Wednesday, 27th January 2010 at 4:08 pm

Posted in Into the system...

No Phone…

with one comment

Just a very short one. I don’t have my normal phone on the ward anymore so sorry for the lack of blogging or twittering! No internet at all!

On day leave today so just able to add a quick message, but won’t be around for a while I don’t think.

Thanks for all of your best wishes. Take Care. Xx

Written by intothesystem

Saturday, 23rd January 2010 at 4:24 pm

Posted in Into the system...

Bombshell…

with 16 comments

On Wednesday night Dr M dropped a bombshell and then ran away whilst it detonated.

Contrary to what was said in ward round on Tuesday, “yes, it does sound like a mood disorder. We shall discuss your notes and call you in later to discuss medication”, they are now questioning my diagnosis, saying my picture doesn’t fit with their understanding of Bipolar Disorder. Now, considering this is based on a half hour conversation with me and a couple days of uncharacteristically fast (for me) mood swings, I am concerned.

They said they want me assessed by the clinical psychologist, which may take “many weeks” before they make any decisions. She isn’t sure where I should wait, here or at home, but is concerned about my safety (which to be honest she needs to be! Being in here doesn’t exactly do anything to convince you life is worth it, when you have already given up).

She said she doesn’t want to change my medication as it might influence the assessment. No mention of taking me off my current meds, which could be doing the same!

Then the meeting was over and I was left to handle the fallout alone.

I am a little shocked. They haven’t seen my Priory notes as the CMHT has lost them. I was under the care of The Priory for many months and I think they had enough time to assess me. Not make assumptions based on a short conversation and observations over a couple of days, which have obviously been influenced by an overdose and stress!

I am concerned that the change of tack seems to have come after J spoke to them. What on earth did she say, especially as she didn’t exactly know me or get the full picture as I didn’t trust her?

I can also sense what is coming. A borderline diagnosis is ahead on the tracks and coming at me fast (or slowly as it’s the NHS). I wouldn’t mind if this seemed to fit, but I am fairly familiar with the criteria and nature of the condition. It doesn’t ring true with my experience. I have no fears of abandonment – I am fiercely independent and quite happy to accept someone won’t be in my life any more, e.g. when therapy has ended. I may miss the person or thing, but not object to losing it and will not try to stop them. I do not have stormy and unreliable relationships – I have been with my partner 7 years. We argue like man and wife and our relationship is strained by this episode of illness, but I don’t love him one minute and hate him the next. My mood swings are not generally reactive and *usually* slower than those suggested for BPD. I don’t suddenly want to kill myself after bad news. Yes, I can express frustration or be upset, but not out to a level that is out of the norm or to extremes. I do not act impulsively without considering the consequences. My major suicide attempts have both been a result of a huge amount of thought and planning. In fact, aside from my mood swings I don’t think I am generally a person of extremes. I also have no past trauma, which is often involved with the condition. I could probably half meet maybe 3 or 4 criteria, but never the 5 needed by the DSM or the descriptions given in the ICD. I’m aware I am having to simplify things through lack of space or time – my thumbs will fall off if I write everything I want to, but I think you get the idea.

Also worth noting that borderline PD is one of Dr G’s specialisms and she never mentioned it to me. She tends to be pretty straight with people, so if she thought it was that then surely she would have been able to say so? She also wouldn’t have referred me to Dr P, him being the mood disorder specialist.

I can’t help but feel this is all part and parcel of the way this label can be misused. Don’t fit classic diagnosis, don’t respond to first line medication, female, suicidal and have mood swings. Oh BPD will do. Lets try and put the square peg in the round hole.

Maybe they aren’t thinking Borderline PD, but the mention of psychologists and lack of anything else even remotely close, suggests they are.

I am also frustrated at the lack of desire to do anything whilst waiting for the psychology/therapy assessment. Even if it was BPD, medication can be helpful with treatment and is often following the same kind of strategy as Bipolar II. She may in a couple months time go back to my current diagnosis, make the same changes and in the meantime I have wasted months of my life stuck on this ward. There never seems to be much desire to get you out, unless they suddenly need a bed then you can be out on your ear, recovered or not.

There are a lot of questions and no one has given any answers yet. I wrote a list of the key practical ones and handed it to my nurse to pass on yesterday, but no mention yet. I suspect I will be waiting until ward round next week.

After all this, my bloke went to see Dr N yesterday for his opinion. I thought this would help but it has made me more confused. Apparently Dr N is quite pleased I am being reassessed as he was never convinced by my diagnosis and he even suggested Dr G wasn’t. I had suspected this myself, but when I questioned Dr G on it, she said she agreed with Dr P. My bloke and Dr N apparently discussed borderline PD for a bit too. My bloke also expressed his concerns about rumination (he seems to think if I stop overthinking and forget about my illness I will be okay) and my blog came up. Apparently Dr N didn’t know I was still doing it! Surprised by this as everyone else, including the CMHT knew. I kinda feel left out of my own care again, so am wishing I had been there yesterday, although I know it is not practical.

Since then I have spent a lot of the last day or so pondering all this. I had a visit from Em in the afternoon which was lovely of her and a short break from everything.

My bloke came in the evening. It was his birthday but he wasn’t exactly full of birthday cheer. Em had got me a cake to give him, which we shared some of, but then we spent the rest of the time talking about all this. He has been doing a lot of research, trying to fix everything and find solutions (typical man).

He has been going over the rumination thing and my lack of positive thinking. I know I overthink. I even overthink good things. The problem is I always have and it feels like part of me. Questioning that feels like a direct attack. It may be an exacerbating factor, but it isn’t the only problem and I also don’t know how I could really change this. I can tell myself to stop and distract myself, but the running commentary just carries on and questions me further. I will almost overthink, overthinking. Distraction works to a point, but when I stop I just go into thinking overdrive instead and I can’t distract forever.

He has all these suggestions of how I can get better and things I need to do. Thinking and therapy techniques, supplements, the usuals of exercise etc. Many of these I do try to employ already and it is all well and good to suggest them, but at the end of the day I am: a) unwell and that can make it hard to do anything, especially when I’m in crisis and all logic goes out of the window, b) stuck in here so many of the suggestions are impractical and c) they may help to some degree but none of these things are going to fix things.

It still feels like he basically wants me to buck my ideas up. I was getting frustrated by this. I know he means well and is trying to help, but I wish he was perhaps more sensitive in his approach. He has gone from acting caring and supportively over the last couple days to criticising me again. I do wish things were all as simple as a bit of CBT, some positive thoughts, routine, eating and exercising well and some distraction. Sadly they are not.

Edit: Maybe this is unfair. The conversation was frustrating and I did feel attacked at times, but I am glad he is trying to help. Some of his suggestions were helpful. There are good bits within the bad. I do just find it hard to see them and I don’t know how much I can do right now.

Today looks pretty bleak and pointless. More waiting and the thought of another long weekend ahead is tiresome. I asked about having Nikki, coming to visit so we could have a walk around the grounds, utilities the nurse said I need to get it sanctioned by the doctor. Considering I am not on a section and would be escorted by my partner this seems unfair. I wish I could just walk out and although in theory I can, they are unlikely to let me. A section would probably beckon, if only an assessment one.

I am tempted to ask for some haloperidol! It is the only thing to ever sedate me and although it turns me into a zombie, I’d quite like to sleep away a few days in an antipsychotic-fueled daze right now. It is not practical in the real world, but in here it doesn’t matter. I don’t have any PRN written up as nothing really works.

Anyway this is pretty long and I’m scared it won’t post! I better go. Xx

Day 5…

with 5 comments

in the nuthouse (not the godawful Big Brother one).

I’m updating purely for something to do. I don’t think anything is going to happen today. No visitors and no ward round.

My ward round yesterday was strange. The usual scary NHS experience of a room full of people and not having any idea who most of them were. It’s not like we have any occupation or therapy here so there can’t even be OTs. Unless there were and they just do nothing! I was too nervous and hyper to ask who they were or remember if they told me their names.

I was interviewed by a psych whose job title I cannot remember, but Dr M was there too and interjected now and then. I was so nervous, that mixed with the hypomania, I became pretty incoherent, speaking so fast they were grappling to keep up. I started by trying to lay down my guidelines – respect, not being patronised and being informed. Not sure how much they listened. I was asked and talked about my diagnosis and how it came about, when I first sought help and what happened following, my last admission here, ECT, The Priory, medication and more. I talked so so much in the half hour that I became hoarse and barely stopped for breath. Felt like both hours due to the amount covered and minutes due to speed! At the end they decided that they needed more time to read my notes and discuss before they did anything and suggested that they would call me back in later so they could give me an idea of the plan. I agreed to this.

Sadly later never came. I don’t know if this is because of what happened afterwards. At 1.30 which was my original appointment time my useless social worker, J turned up uninvited and apparently unannounced. I had been asked if I wanted her there and said no, which is why they could change my time to this morning. The nurses seemed to be as confused as I was when she arrived. J saw me and proceeded to wind me up, which as I was already agitated was not helpful at all. She basically suggested I have made bad choices to end up here and it is all my fault. She doesn’t seem to recognise or acknowledge mental illness despite it being her job. She moaned about not going in ward round with me, ignoring the fact I didn’t ask her to come. Apparently it is just what happens. Well no it isn’t if I am asked and say no, surely? She then asked to see the doctor and went in without me. I am angry about this because I explicitly asked to be treated like an adult and be kept informed, but I was not involved in this conversation. I don’t know what was said, but she came out and told me they intend to RE-assess me next week before they decide to write my CPA or do anything. I got the impression I would not be involved in this latter process. She then left saying she will be checking exactly when my next ward round was so she can be there. I didn’t seem to have a choice in this matter and it seems they are generally weekly. No wonder no one gets out very fast with all this waiting to be seen.

I still hoped I would see the doctor again and they would have a plan for me, but it didn’t happen. I fear they decided just to talk to J and not bother with me, despite my wishes.

I am concerned by the mention of reassessment. Surely that is what happened yesterday? Admittedly I was hypomanic so it may not have been as clear as they would like, but for all they know I could be very manic by next week and they can’t reassess me every week before they do anything. I could be here forever. I also worry it means they do not trust or believe me. I have been feeling a little paranoid.

I moaned about J a lot to my bloke when she’d gone and said I wanted to change. He called the CMHT afterwards. Told J’s manager I wasn’t happy and hadn’t been for a while. Apparently they are meeting today to discuss and consider someone else. I’ve not been informed by anyone here about this yet, just by the bloke. Another sign of being ignored.

They asked if I wanted to complain formally. I was unsure about this, but have been encouraged by my bloke to write a letter, which I did last night. It is probably too long, but there have been so many niggling problems, as well as her general attitude, it was hard to express things. That and hypomania leads to verbiosity.

I feel a lot less hyper and giddy this morning and may be starting to come down a little. Kinda in two minds about this. Some of the hypomania has felt pretty good over the last couple days. Writing and writing. Not feeling tired. Things feeling bright and fast. It makes a change to numbing depression. But, and there is a but, I was worried about how I was coming across. It may have been to blame for the lack of response in ward round. I have also worried about things turning really nasty and the background thoughts becoming louder whilst still having this energy. Although my mood is mixed, the hypomania has been dominant meaning it is less bad.

Now I feel a little agitated, but mainly unable to think. Numb and bored. Frustrated. Wish I knew what was happening.

Written by intothesystem

Wednesday, 13th January 2010 at 9:59 am

So…

with 3 comments

Gone back to m.wordpress.com today. Was trying to save data as think email is separate but this can’t use much and is easier to use except often the editing box goes out of view which can be a pain to type in. Thank god for qwerty phone and nice buttons. I found it weird at first but can do it pretty damn quick these days. Wouldn’t go back I don’t think.

I may see the doctor today after all. Named nurse felt bad for double booking and has found me a slot. Apparently someone cancelled. Don’t understand how you’d cancel your ward round unless discharged or on leave and don’t think anyone has gone since last night. Don’t mind though if it means I see the doc sooner. Still don’t know which is mine. Dr H or Dr M. I think Dr M but not sure. Dr H is on holiday anyhow so is Dr M this week either way. Older lady doctor. Looks nice from pic on wall, but I find older women scary. In my experience they often seem to look down on us young folk, try to patronise or are judgmental. Shall see. Going to try hard to make this work. Written a list of guidelines almost. Treat me as an adult, keep me informed, understand I struggle to talk and like to write, understand memory fuzzy due to ECT etc. Hopefully she will understand. Also made mood chart and written about events leading up to admission and thoughts after. Hoorah for hypomanic productivity. Hope the notes help.

I’m still writing a lot. Worked out it must be well over 15000 words by now. Could be a dissertation or novel soon the way I’m going. Wouldn’t want to type it all up, but may copy Em’s diary series and write some snippets when I’m out some day. Would be good to have a bit of a log. Had ideas about a couple of posts too, comparing this place to The Priory and things. Most of it doesn’t make for interesting reading. I’m hyper, I’m bored, I’m hyper, I’m writing lots, I’m hyper, I’m bored etc. That’s pretty much it. I lot of it is broken writing, one topic then another, then another as I can’t stick to one thing. Admittedly there are pages of introspection, feelings. thoughts and frustration too, but a lot of nonsense in between. I am just keeping my pen flowing between texts and listening to music. Writing whatever comes into my head due to hypomanic verbal diarrhoea. Keeping my head occupied at least.

Argh going in early. Must go. Nervous!

Written by intothesystem

Tuesday, 12th January 2010 at 10:34 am

So it works…

with 3 comments

I thought it formatted weirdly when I looked at in my nokia browser, but apparently it is fine. Checked on skyfire and all good. No idea how I tag posts though. Can do that later I guess. (Edit: finally got around to tagging).

So today has been up and down. getting increasingly high all morning, down a bit mid afternoon and going up again now. This daily pattern often happens when I’m hypomanic. Always worst in the evening as night and supposedly sleep approaches. I’m not sure I’m going to need much again tonight. Been trying to stay off the stimulants although I had some haribo.

Spoke to my grandma. Had to consciously try to slow down my speech and I talked and talked and talked. She couldn’t get me off the phone. Oops.

Played some more solo scrabble this afternoon. It is sad that I end up playing myself, but nothing else to do and no one else really up to playing with me.

Filled in my WRAP form. Makes sense, but I know that when crisis comes I am likely to ignore what it says, even though I know I shouldn’t. It is not like I don’t know what I should be doing. It is just that when it comes to doing it I find it so bloody hard to ask for help, or even if I do manage to ask for it, I can’t then accept it. I don’t know. I don’t really remember being well so filling that part in was hard. It was useful to write what recovery means to me though and my early warning sides for both depression and hypomania. I remembered reading Dee Dee’s account of her WRAP plan as I was doing it and had some of the same thoughts (note – must edit to add link when on computer – Edit: Here we go!).

Crap. I just had bad news. Was meant to be seeing the psychiatrist tomorrow, but I’ve just been told it will be Thursday now. I can’t wait that long for change. I need someone to do something. I need a plan so I have some hope. What is the point in me being stuck in here for days without seeing a doctor? That will be almost a week I will have been here without seeing a psychiatrist. Isn’t the point of being here to have constant care from a psychiatrist and to make a plan to get better? The nurse didn’t explain why. Just told me they will explain tomorrow and a mistake has been made. I feel like I’ve been stabbed. I was counting down the hours until tomorrow afternoon and now there are a lot more hours for me to wait. I don’t know what to do. I started to cry, but I can’t even do that properly. Stopped as soon as I started. Froze up like the weather. I just wish I knew what was happening. I wish I didn’t feel so powerless.

I don’t know how long I can take this. I am meant to be here to get better but I just feel cooped up with no support. I don’t see the point. Wonder if I’d be better at home, but even though I’m here voluntarily I suspect they would change that if I tried to leave. I don’t know. I don’t know. I don’t know.

Any ideas?

Written by intothesystem

Monday, 11th January 2010 at 7:07 pm

Testing Email Blogging…

with 7 comments

I have no idea if this will work from my mobile email address and not my intothesystem one, but it is worth a try. I am not going to blog much as I guess I should be using my time here to try and get better. At least that is what everyone keeps telling me, but then again I am bored and it helps me to order my thoughts and write. All I have done is write. About 80 sides in my A5 paperchase notebook in 3 days. I am going to run out of space in a few days at this rate. Already using vast quantities of ink!

I think I am a little hypomanic at the moment. My mood has got increasingly speedy over the past 24 hours. It was horribly mixed last night. Desperately suicidal and wanting to self harm, yet bouncy and hyper. This morning I am just hyper and giddy. The bad thoughts aren’t as strong and are being replaced by a constant need to talk and write. I’ve been trying to calm down to avoid the chemical cosh. Avoiding the urge to dance around and sing!

Apparently I will see the psychiatrist tomorrow. I was hoping it would be today. Spoke to one of my named nurses for a bit just now though so they should know what my mood is like. I just about talked her silly I think. I seem to have got lucky with my nurses. They seem to be the two nicest staff here but they are both new, young and not disillusioned yet.

I just want people to be straight with me and tell me what is going on though. There doesn’t seem to be much involvement with the patients. We just get ordered to dinner and to collect our meds and that is about it.

Actually just after moaning my named nurse came back with a WRAP form saying that I should get involved with my CPA as I am clearly capable and enjoy writing. I guess I’m not being treated as a complete imbecile then! I am trying to make it clear I want to be involved and not just bossed about.

I shall sign off now. Don’t want to write a missive and it not work, but if all goes to plan I may write a little bit now and then.

Thanks so much to everyone for their kind messages of support. Especially to those who have texted or tweeted. You are helping to keep me sane! I say sane of course when I’m in a loony bin, but you know what I mean. Take care Xx

Written by intothesystem

Monday, 11th January 2010 at 10:46 am