Diagnonsense…

This post is inevitably going to be very long. I have been thinking about what to say for days now and I just haven’t been able to force myself to do it. I need to write though as I must get this straight in my head.

I seem to have writers block. I sit down here with the intention of writing and making sense of everything and I can’t do it. I try to put all of these thoughts down onto the screen and I can’t. There are too many conflicting worries. Too many fears. I know what I have to say, but I am scared. I am scared of writing for making it real.

As you may have read, there was talk about changing my diagnosis when I was first admitted. I was a little surprised and worried about this to say the least. It was hard enough getting a firm diagnosis the first time, let alone having to go through it again. I had accepted the Bipolar II diagnosis and was felt it was accurate. I’ve not found any other diagnosis that describes my experience as well, although I do accept there are so many overlaps between psychiatric diagnoses that it is possible to get things wrong or mixed up.

I am uncomfortable with the idea that Dr M seemed to decide I didn’t have Bipolar Disorder in about 10 minutes. She referred me to Dr S, who is a consultant psychiatrist specialising in psychotherapy. She’s involved with the EDT team that I have been waiting on since last year.

Dr S assessed me over two, hour long appointments. Dr M wanted someone with a therapeutic background to assess me and provide input on my diagnosis. Dr M was obviously considering a personality disorder, although amazingly it seems not the one I thought she was (BPD). I am starting to wonder though how much Dr M influenced Dr S’s assessment.

Dr S asked me about all sorts of stuff. We did the usual history thing and she dug deeper on some things. She asked me a lot about my mood. One thing I was uncomfortable with was the constant assertion that my experience of high moods, could just me not recognising normal moods because I spend so much time depressed. I don’t agree with this. It is not normal to be working 16 hours a day, hardly sleeping yet not tired at all, running around your office doing a million and one things, laughing and talking constantly and generally not being able to concentrate on anything.

At the end of our second session, she told me what she thought. She agreed that I had “some form of mood disorder” but wouldn’t commit to anything. She told me that she was leaning towards recurrent or chronic depression rather than Bipolar II disorder, but wouldn’t dismiss that completely. She also mentioned “personality traits” (mainly perfectionism and high standards) that she said perhaps made me more susceptible to mood episodes, but she also said she didn’t think there was enough to suggest a full personality disorder diagnosis.

So what did Dr M think? I tried to find out, but she kept avoiding the subject. With regards to mood, she did mention dysthymia at one point, but surely by definition dysthymia would never be severe enough for hospitalisation? There were times when she even questioned whether or not I was, or had ever been depressed, which seemed bizarre.

When asked about the personality side of things she said she  “didn’t want to open any boxes that can’t be closed”, implying that it could be dangerous to give a diagnosis without being certain. She said there were personality traits which she was concerned about, particularly focussing on “high standards”, but she didn’t feel any were severe enough to consider a full PD diagnosis. She would also tell me that labels weren’t important and that we should focus on trying to “change the way I see the world”.

I saw Dr N a couple of weeks ago and he said my diagnosis had been changed on the system. This sparked my curiosity because I couldn’t get Dr M to commit to anything. I asked him what it said and he looked it up. It just said “moderate depression” and “personality disorder”. Nothing more specific than that. I think we were both curious as to what PD, although I think he suspected borderline too. After all, he had even suggested it back when he first met me, but it hadn’t been mentioned again since.

I saw Dr M again last week. We got through pretty much the whole appointment before I eventually found an opportunity and the courage to ask about my diagnosis. She had to look back through my notes to find it, which is a little scary. You would have thought she’d know what diagnosis she had given me.

It states clearly:

1. Moderate Depressive Episode
2. F 60.8 Other Specific Personality Disorder.

I have issues with the first diagnosis, but didn’t express them because I was so surprised and concerned about the second point. I didn’t know what F60.8 actually said, so I asked her what PD she referred to and she mentioned Narcissistic, which I was surprised about. Of all the PDs I had considered she might give, it was not that one. I told her this and she just said that she “felt the signs were there” and that Dr S agreed with her. I told her what Dr S had said to me; that there were some unhelpful personality traits and that I accepted those, but also that either of us didn’t think any constituted a full personality disorder diagnosis. Dr M then tried to justify her decision by saying it was not the primary diagnosis, but that if she thought it was there it should be documented. Somehow she seems to have decided to open the box after all.

I wanted to question how helpful any personality disorder diagnosis would be, let alone an inaccurate one, considering there aren’t any specialist services or extra treatment available here, but we had already gone well over my time and I didn’t have the fight or words to argue.

I want to argue though. I want to fight. The more I have read and the more I think about it, the more unhappy I am about this diagnosis. It doesn’t seem accurate and really doesn’t seem helpful.

I am less concerned about the depressive episode diagnosis, although that has its problems, but the personality disorder diagnosis is really concerning me. I find myself offended and ashamed by it. No one wants to be considered self-serving, unempathetic and arrogant. I think the shame has actually been one of the barriers to posting about it. I don’t even want to put my name near the diagnosis I’m so unhappy about it. The fact it is written in my notes for posterity is disconcerting to say the least.

So what is wrong with this diagnosis?

Firstly “Moderate Depressive Episode”.

If you consider the ICD-10 explanation of this diagnosis, F32.1, you have to note that by referring to a depressive episode you are implying that it is the first episode of depression. For me this is far from the case and I don’t like that my diagnosis neglects to consider any past mood episodes. It is almost as if she doesn’t believe I have been depressed before.

I also question the severity, but I understand that this can be subjective. Many people would go off my BDI score, which is still above 40 (severe depression is considered 30+). I do have more than four of the ICD-10 listed symptoms, but I would also suggest that some of these symptoms are marked and distressing, making it severe. Actually attempting suicide would surely put the suicidal ideation into distressing territory? Worthlessness, guilt etc are all pretty marked too. The thing is I still function reasonably well so people can be forgiven for thinking I am better than I am. It also doesn’t matter. The treatment for a moderate episode varies little from a severe one and it doesn’t make much difference whether it is my first episode or 10th.

What about the lack of acknowledgement of hypomania or high mood? The treatment for Bipolar II Disorder is different to that of Major Depression. I have responded much better to the introduction of Lamotrigine as a mood stabiliser than I did to any antidepressant to date. What if they try to take me off this? Would I respond better to a different one and will they ever try it? Usually antidepressants make me agitated and unstable. I have been okay with the Reboxetine so far, but it doesn’t seem to have lifted my mood at all, so what will happen if they change it? What if I am given an antidepressant that sends me skyward? It worries me.

At the end of the day though I am depressed at the moment and that’s the important thing. It’s the other diagnosis I’m most concerned about.

So – F60.8 “Other Specific Personality Disorder” (Narcissistic).

The ICD-10 does not give individual diagnostic criteria for the disorders listed in this category, so I will assume that the DSM-IV criteria is what Dr M is referring to, after all she had a copy of the DSM on her desk when I saw her.

The criteria for Narcissistic Personality Disorder is as follows:

A pervasive pattern of grandiosity (in fantasy or behavior), need for admiration, and lack of empathy, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:

1. has a grandiose sense of self-importance (e.g., exaggerates achievements and talents, expects to be recognized as superior without commensurate achievements)
2. is preoccupied with fantasies of unlimited success, power, brilliance, beauty, or ideal love
3. believes that he or she is “special” and unique and can only be understood by, or should associate with, other special or high-status people (or institutions)
4. requires excessive admiration
5. has a sense of entitlement, i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations
6. is interpersonally exploitative, i.e., takes advantage of others to achieve his or her own ends
7. lacks empathy: is unwilling to recognize or identify with the feelings and needs of others
8. is often envious of others or believes others are envious of him or her
9. shows arrogant, haughty behaviors or attitudes

It is also a requirement in the ICD-10 that any specific personality disorder diagnosis meets the general diagnostic criteria for personality disorders.

According to ICD-10, the diagnosis of a personality disorder must satisfy the following general criteria, in addition to the specific criteria listed under the specific personality disorder under consideration:

1. There is evidence that the individual’s characteristic and enduring patterns of inner experience and behaviour as a whole deviate markedly from the culturally expected and accepted range (or “norm”). Such deviation must be manifest in more than one of the following areas:
   1. cognition (i.e., ways of perceiving and interpreting things, people, and events; forming attitudes and images of self and others);
   2. affectivity (range, intensity, and appropriateness of emotional arousal and response);
   3. control over impulses and gratification of needs;
   4. manner of relating to others and of handling interpersonal situations.
2. The deviation must manifest itself pervasively as behaviour that is inflexible, maladaptive, or otherwise dysfunctional across a broad range of personal and social situations (i.e., not being limited to one specific “triggering” stimulus or situation).
3. There is personal distress, or adverse impact on the social environment, or both, clearly attributable to the behaviour referred to in criterion 2.
4. There must be evidence that the deviation is stable and of long duration, having its onset in late childhood or adolescence.
5. The deviation cannot be explained as a manifestation or consequence of other adult mental disorders, although episodic or chronic conditions from sections F00-F59 or F70-F79 of this classification may coexist with, or be superimposed upon, the deviation.
6. Organic brain disease, injury, or dysfunction must be excluded as the possible cause of the deviation. (If an organic causation is demonstrable, category F07.- should be used.)

I guess you can draw your own conclusions from reading the criteria and what you know of me from reading here. I guess others may have a different opinion of me, but I hope they can see that this is not what I am like.

I have decided to go through each point of the NPD criteria myself to see if I can work out what does and doesn’t fit.

1. Self Importance

has a grandiose sense of self-importance (e.g., exaggerates achievements and talents, expects to be recognized as superior without commensurate achievements)

I really don’t think this is the case. I often downplay my achievements, because I can actually find it hard to admit them, even recognise them. I was bullied at school for being clever and a “swot”, so I am not really comfortable with admitting my successes to people. Yet when I’m assessed by mental health professionals I do of course have to talk about my achievements and talents, so I guess they can be forgiven for not realising this. It’s hard not to talk about these things when you are asked to give your life story. I have a good job, which I have been successful in, I got a 2.1 at university, I got 3 As at A Level, I got 11 GCSEs including 4A*s and 4As. These are facts though, not exaggerations.

I don’t believe I am superior, certainly not to anyone with equivalent achievements. Most of my colleagues at work have a similar background to me and I certainly don’t consider myself superior to them. Yes, my academic record is superior to someone who left school with 3 Cs at GCSE, but that doesn’t make me superior; just better at school.

I think this is hard when you have been generally successful. You can seem like you are bragging when you are not, it’s just the truth. I remember during the assessment with Dr S there was a lot of focus on my achievements and suggestions that considering my age I had done well. I generally agreed with her, but now I almost wonder if she was fishing for this.

2. Grandiose Fantasies

is preoccupied with fantasies of unlimited success, power, brilliance, beauty, or ideal love

I don’t even believe in unlimited success or ideal love so how I can be preoccupied by fantasies of these things, I don’t know. When Dr M and Dr S had been talking about high standards, they actually seem to mean in this sense, rather than the perfectionist sense, which I didn’t realise until this diagnosis was made. So I’ve been agreeing with them when I actually disagree. They seem to think I expect to be highly successful and powerful. I don’t. In the past I had been fairly ambitious, expecting to do well at school and going on to get a good job, but I don’t expect “unlimited success”. Anyone with a good academic record starting out on a career similar to mine has similar expectations. This is usually something to be considered positive and not out of the ordinary. Now of course I’m depressed and even the most simple tasks seem ambitious, which would suggest that these thoughts aren’t pervasive either, therefore not meeting the diagnostic criteria.

There was a short period fairly recently where I had thoughts of going into politics as I wanted to make a difference and there was a lot of focus on diversity in politics and increasing the number of women in parliament. I can be passionate about issues and want to do something about them. I guess I may have been fantasising a little at the time, but even still this is not an unrealistic ambition. I have been interested in politics for years and often considered it as a future career option, but not because I want to be all powerful.

I have had the odd grandiose moment when my mood has been high though and I have admitted this. Of course they question whether or not I’ve ever experienced hypomania, so will put this down to personality rather than symptoms of a mood disorder.

3. Special Status

believes that he or she is “special” and unique and can only be understood by, or should associate with, other special or high-status people (or institutions)

This is one that I guess I can identify with, although I am not sure it is correct. I do not believe I am special as such, but I guess I do feel more comfortable with people that have a similar background or interests to me. I think everyone does though to some degree and it is not like I will not associate myself with other people. I try to judge people on their merits and will talk to anyone.

I can see why they may think this is true though. During my assessment with Dr S she asked me about my regrets regarding me degree choice. She asked about how I chose my course and one of my considerations was choosing a respected university. This consideration was mainly to keep my career options open as opposed to anything else. There are plenty of graduate employers that only recruit from top universities. I guess this could be seen as wanting to be associated with “high-status institutions” though, so they may well use this as an example when diagnosing me.

4. Admiration

requires excessive admiration

Erm. I don’t know how to reply to this. I cannot deny I can have difficulty responding to criticism and that I like praise, which I guess may come under this category, but I don’t require or seek excessive admiration. If someone likes me that’s a bonus, but if they don’t then fine.

5. Entitlement

has a sense of entitlement, i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations

A sense of entitlement? I expect fair and reasonable treatment, but I don’t expect favourable treatment over others. I am a strong believer in equality and a sense of entitlement would go directly against this.

I can at times be stubborn and this could be misconstrued as expecting compliance with my expectations. I will compromise, but I try to be assertive as well. I don’t see this as entitlement though. We are usually encouraged to be assertive when in therapy, so it would be wrong to judge this as being narcissistic.

6. Exploitative

is interpersonally exploitative, i.e., takes advantage of others to achieve his or her own ends

It is criteria like this that makes me so uncomfortable about this diagnosis. I don’t want to be considered self-serving. I don’t take advantage of others in order to get ahead and I find it horrible when people do. Some of examples given are things such as dressing provocatively to get your own way. Ignoring the fact that if I dressed provocatively people would run to the hills, I would never do this. I hate the idea on too many levels.

7. Lacking Empathy

lacks empathy: is unwilling to recognize or identify with the feelings and needs of others

There are two sides to this for me. In many ways I am often considered too empathetic. I consider other people’s needs often to the detriment of my own. I was told off repeatedly by the therapists at The Priory for considering everyone else first, for listening to the others and offering them advice and support, but for not giving myself the opportunity to speak and receive that support back. I would like to think that I understand how others feel and that I am sensitive to their needs. I certainly try to be, so I am not unwilling.

Yet, I know occasionally my bloke finds I have a lack empathy towards him. He says I don’t realise how much the things I say and do hurt him or recognise how he is feeling. I think our relationship is an isolated case though, because there are many ways in which I act different with him than I do with others – lack of assertion is another.  I also don’t think depression helps matters much. I guess a suicide attempt could be seen as not taking other’s feelings into consideration, but if you knew how much I worried and obsessed over this beforehand you would realise it is not.

8. Envy

is often envious of others or believes others are envious of him or her

I think everyone gets jealous now and again. I can be envious of others that have recovered from illness, because I wonder why I have not. I can be envious when someone gets better grades than me at school. I can be envious when I see people having a great time when I am depressed. I wouldn’t say it is often though and certainly no worse than most.

I really don’t believe anyone is envious of me. There would be no reason to be. I’m depressed. My life sucks!

9. Arrogance

shows arrogant, haughty behaviors or attitudes

I hope I don’t, but I guess at times I can be a bit of a snob and I’m guilty of generalisations. I am not exactly appreciative of chavs and I can sometimes be a bit rude towards people that watch rubbish on TV, but I’m not alone on this. I don’t think I’d go as far to say that this is a major problem or that I was particularly bad at it. I certainly know people who are worse than me!

_______________________

Anyway.  I’m going to post this now. It’s not really complete. There is plenty more I could say on the matter, but I’ve been at it for hours and if I don’t post it now it may be days before I do finish it. Maybe I will edit this post, or maybe I’ll add another. We shall see. This is well over 3500 words long now and I have spent quite a few hours on it.

Does anyone have any ideas of what to do next? I just feel a bit lost and trapped. I’m worried that if I question the diagnosis, it will come across as narcissistic! That is the biggest problem with personality disorders. Questioning it is just further evidence of the disorder and can all be seen as part of the problem.

Bombshell…

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

Face the Music…

I think it’s time I admitted something. I started to write about this a couple of weeks ago, but I didn’t feel up to facing the music. I didn’t post about it at the time because I didn’t want my bloke to know, but now this is over I guess I can admit it.

I stopped taking my meds.

I know it was stupid, but I did it anyway. I don’t know why I stopped. It started when I missed a couple of doses by accident sometime in November. I really didn’t notice any difference and started to wonder what would happen if I stopped taking my medication. It is something that has crossed my mind plenty of times, but I’d never really done anything to test it. I know my partner often questions the point of the medication and I often doubt it too. After all, I managed without it during my teens, even when I was unwell.

Anyway. I started forgetting to take my meds or messing with the dose. One day I’d miss the night-time dose. The next I’d skip the morning one or I’d try doubling something or whatever. I wasn’t taking any of it regularly and I wasn’t taking what I should have been.

This continued until I saw Dr N about a month ago. We were discussing increasing the Propanolol and he asked me something about my medication and it just slipped out that I’d been skipping doses. I don’t quite know how I ended up telling him really. I had made a concious effort to keep this a secret, but somehow it just slipped out. He gave me a mini-lecture and seemed concerned, but it was okay. He seemed to understand why I was doing it. He asked me if I’d tell Dr D and although I was very reluctant to do this, I did at our appointment last month. Dr D had little of value to say on the matter and just told me repeatedly to take my medication. This made me less keen on the idea! I don’t exactly have much faith in the man.

After I saw Dr N I did make an effort to start taking my medication again. I had been taking the Propanolol properly, hoping that it would help the headaches and generally I’d been taking the others too, but then the next thing I realised I’d stopped the Lamotrigine and Melatonin completely. I don’t even know when it happened. I just realised I hadn’t been taking any when I noticed I hadn’t used any of my new lot of medication. When I realised I had stopped I didn’t want to start again. I was worried about side effects and decided it was easier just to stay off them and I just didn’t care enough to bother.

Useless Social Worker, J asked me if I’d started taking my meds properly again and I outright lied to her. I seem to be making a habit of lying to her now. I feel bad about it, but I just don’t trust her. She asks me how I am and I tell her I’m fine. It just seems easier.

Then I returned to see Dr N a fortnight or so ago and he of course asked me about the meds. I couldn’t lie to him as much as I wanted to. He could see right through me anyway so I just admitted it. Again he was good about it. Concerned, but understanding. He even went as far as to say he’d probably think the same if he was taking regular medication and didn’t see much benefit to them. Unprofessional perhaps, but he knows me pretty well and I think his attitude is that any intelligent person would question such things.

He did point out though that I was less well than I had been a couple of months before and that I was heading the right way towards admission. He joked that he knew if I needed to be admitted again, it would take the men in white coats to do it. He is right of course. Voluntary admission to Hollins Park is just not happening. I’d consider somewhere else, but I’m not going back there if I can help it. I’ve actually been bad enough to consider that hospital may be the best place for me right now, but I’m not going to rush there in a hurry.

He asked me if I was throwing the pills away or stockpiling and I had to admit I’d been stockpiling. He was concerned that I was planning an overdose, which I guess was a logical assumption. I hadn’t been really though, knowing that Lamotrigine even in those doses is unlikely to cause much damage. Not to say that I hadn’t considered doing it anyway just in case.

He tried to persuade me to take the medication again. We agreed that I would need to titrate the dose back up, but we should do it quickly, unlike the usual 25mg increases used for Lamotrigine. So he didn’t give me another script for the Lamotrigine and sent me on my way with one for the propanolol – which I had still been taking intermittently. I was told to come back when I had used up most of my stock or if I needed to before.

So I reluctantly restarted the meds. My thoughts were confused on the matter. I didn’t want to because I didn’t see the point. In another way I wanted to because maybe restarting the meds so quickly would go horribly wrong and kill me anyway (there is meant to be an increased risk of The Rash). I also wondered if I continued to get worse whilst back on the medication then maybe people will not blame any deterioration on that and I will prove my theory right that the medication is crap. I guess the rational part of me also hoped that things would actually improve again.

I saw Dr N again this week. I told him I’d restarted the medication and he seemed pretty relieved. He said he had been quite doubtful if I would, which is fair enough. I doubted if I would. I think he was pretty worried about what might happen if I didn’t though and I suspect he questioned whether or not he should have been getting the crisis team involved, with a view to calling the men in white coats. I found it hard to talk to him this week though. I didn’t know what to say and was a little vague. I should have been more honest about how things are, but I fear those white coats. I was at the branch surgery too and I always feel uneasy there. I think it’s because it brings back memories of the silly overdose back in September 2008.

He asked if restarting the Lamotrigine was making me sleepy, which was possibly his way of telling me that I didn’t seem with it. I wasn’t really with it, but I didn’t know what to say. I didn’t think it had been. If anything it had increased the insomnia, but then again I may be more tired in the day due to sleep deprivation. I had little to report in the way of side effects, but I’m not sure I’d even notice any if they were there.

So how have I been without the medication? Did my experiment teach me anything? Yes, I have to admit I’ve not been well this last month, but is it due to a lack of medication? I know that everyone is going to blame my deterioration on the lack of meds, but I really don’t think it’s that simple. I think the fact I stopped taking the pills is probably symptomatic of the deterioration. When I stopped, things were already messy. I was very suicidal. I wasn’t thinking clearly. I was having weird dissociative episodes and felt out of control. I was getting worse anyway and because of that I didn’t care what happened to me. Stopping the medication seemed like a logical step.

I think about why I did it and I don’t really have any answers. My thoughts were racing through all sorts of things at the time. I guess maybe I just wanted to accelerate the self-destruction. I think I almost hoped that I’d go truly mad and finally have the impetus to try and off myself again. I’ve been holding on by a thread for so long I just wanted to snap it. I seem to spend so much time depressed lately, that I wondered if it is the medication causing it. In some ways the monotonous, not-quite-so-bad depression is worse than the actual pits of despair. It’s so dull and draining. I was truly fed up of it. I had been a little better, but I still wasn’t well and the knowledge of that was demoralising. If the best I can hope for is moderate-severe depression then I’m screwed. Life really isn’t worth it. I am perpetually suicidal and even the improvement I saw a couple of months ago was not enough to change that. I wanted out and this seemed a way to do it. I knew there were risks involved with stopping the meds and I wanted to take them. I felt awful anyway, so what was the point in the medication?

Part of me also wanted to see if I could induce some hypomania by stopping my medication. I’ve wondered a lot recently about what would happen if I was unmedicated. Would my little ventures upwards continue to escalate without the medication pulling me down? I want to experience the highs as well as the lows. What is the point in living with this awful mood disorder if I only get the horrible side of it. The depression and agitated mixed states, but none of the “nice” highs. I just wanted a change and hoped that by stopping my medication I’d be able to create that.

All the while I did have a small piece of rational mind that questioned what I was doing. I could feel I was getting more out of control, but this rational side was not strong enough to stop the rest of my mind. I think it was also overpowered by a little part of me that hoped this would be enough to make people realise I was struggling. Maybe it would help me to get more support. Perhaps it was really a pathetic cry for help?

Another theory is it was actually a way of stopping me from killing myself. By doing this I was trying to change things. I was trying to prove my medication wasn’t right. I was also trying to see if I could make things better without the medication. I needed a change. I couldn’t carry on the way things were. I was getting impatient again and the way things were going I’d have tried to kill myself out of frustration pretty soon anyway, just as I did when I was in a similar place at the start of the year. I’m annoyed that I didn’t spot the loop repeating itself, but maybe I did and this was my way of changing the course.

I also worry about what people think of me for this. I knew it was such a cliché to stop taking my medication and I hated being that cliché. I worry that people will think I don’t want to get well and that my illness is all my fault and that I’m just not trying hard enough. I worry about having non-compliance all over my notes.

Sadly my foray into non-compliance hasn’t really worked out as I had hoped. The lack of meds didn’t trigger any really nasty side effects. I didn’t get fits, like the patient information leaflet warns. I certainly didn’t get any highs. I just continued the way I was already going, getting more and more suicidal and losing motivation and energy all the time. I didn’t manage to kill myself, possibly because I am too depressed and can’t be arsed. I continued to pretend everything was fine and hid this from almost everyone.

I wonder what would have happened though if I Dr N hadn’t got this out of me so soon. If I’d stayed off the meds longer maybe what I’d secretly hoped might happen would have. I wish I had the chance to find out. I still don’t want to take the medication. I still see very little point. I noticed that I slept better without the Lamotrigine and with it my sleep has got worse again. I’ve felt a bit physically dodgy since restarting, which is a pain, but nothing overly nasty. I didn’t seem to get any withdrawals coming off the meds either. I don’t feel any better now than I was when I didn’t take them, so maybe things would have been the same with or without. It maybe feels like someone is trying to put the brakes on my snowballing descent though. I feel a little more in control, but then again, brakes don’t work in ice and I am not sure they are working right now.

Maybe a little longer and things will stabilise. Medication can take a while to kick in. Dr N suggested we increase the Lamotrigine after Christmas if things aren’t any better. I wonder if it’s worth trying something new instead. Yes, maybe this test has proved the medication does help a tiny bit. Yes, it is by far the best medication I’ve been on so far, but I am not sure it’s enough. If all the medication can manage is to keep my head above water, then what is the point? If things continue as they were then this will probably only happen all over again. That or I’d try and kill myself in frustration. It’s very true that you are at more risk of killing yourself when you are getting better. I proved that back in February.

So.. I’ve got that off my chest now. I am worried if there will be any backlash. I hope not.

EAP Therapy…

I’m still not able to face the draft I started the other day, but here’s hoping I can try and complete a post for once.

In my last proper post I mentioned the EAP and the fact I was being referred to a therapist nearer to here. An appointment was arranged with a therapist based in Manchester and I attended last Thursday. The appointment basically consisted of CORE form filling. I knew I would have these forms to complete. I had the same forms to complete last time I used the EAP service, but I hadn’t expected them to take the whole session. I had expected the chance to at least talk a little.

The thing is, I don’t think I’d have talked given the chance anyway. I wasn’t comfortable with him and less so after completing the forms. I think he was surprised to have a client who could tick the inpatient boxes and the high risk sections. I’m not sure he knew how to deal with someone who suffers from severe mental illness as opposed to the work-place stress and occasional bereavement that he will be used to. I may have been paranoid, but it almost felt like he was scared of me. Don’t get me wrong. He seemed nice enough and I think he would have been good with his usual clients, but it just wasn’t a fit.

So. I rang back the EAP and told them I’d quite like to see someone else if possible. The original telephone counsellor had made a point of ensuring I knew I could do this before the therapist was allocated, yet I still felt like a nuisance. They got back to me though and told me they were trying someone else. The next day I had a missed call and voicemail from DP, my old EAP therapist. His number was still in my phone so I knew it was him before I’d even checked the voicemail. He had remembered me. I don’t know if that is a good or bad thing. I called him back and we made an appointment for Wednesday.

I am in two minds about seeing him again. I’d mentioned the other day that I was secretly hoping I’d be referred back to DP, but I’m now wondering if that is wise. I guess at least I know that I can talk to him. He knows some of my history (although an awful lot has happened since our last appointment!!).

I’m scared though too. When I last saw him, I was one of those work-place stress and bereavement cases that EAP therapists are used to. I was not the mentally ill patient, that has been through the system. Admittedly I was in denial about my mental illness back then. It was definitely there and I even started to enter the system as a result of our appointments, but I hadn’t tried to kill myself, been in hospital and the rest. Will he know how to handle someone with severe mental illness or will he be just as clueless as last week’s therapist?

I also looked back through the emails we’d exchanged last year. I remembered with horror that I’d sent him the URL to this blog! After our appointments had finished we’d been in touch a couple of times. I’d given him an update as to what had happened after seeing my GP and telling my bloke. I guess the fact I shared this blog with him, shows that I trusted him, but I had never expected to see him again. I don’t know if he’ll remember. Shortly after I emailed him this blog was found by my partner and I stopped writing for a while. I suspect if he did read he would have given up then.

I wonder if I should just remind him this blog exists, but I am a little scared about sharing it with a professional, especially one who will be in touch with my GP and CMHT. It would be easier than explaining things though. We only have three appointments (the one with the first guy still counts from my allocated four), so it will help speed things along.

I don’t know. We will see what happens tomorrow.

Doctors and EAPs…

I saw Dr N on Thursday. It was good to have him back.

I wasn’t really with it at the appointment. I couldn’t focus and didn’t know what to say. I have felt pretty numb over the past few weeks and I couldn’t convey how I felt. At one point he just said “Are you okay? Have you been sleeping? You seem like you’re on another planet”. I told him that sleeping was a silly question, which he admitted, but he was right. I was very tired and vague. The fact he’d noticed though was good. It makes a change from other doctors that clearly pay no attention to how you really are.

I explained that I’d been having problems with headaches over the past couple months. I’ve literally had a headache every day for about 3 months, sometimes incredibly intense pain, other times just a dull ache, but nearly always there in some form. Beta Blockers are meant to be effective in preventing headaches, so he was a little concerned seeing as I’m already taking propanolol (for anxiety/agitation). We’ve decided to increase the dose and also switch to the modified release version so I’m now taking 160mg daily instead of 40mg b.d. Hopefully it will have some effect.

On Friday I got a phone call from HR. I have a new HR Rep, R. She introduced herself a couple of months ago, but hasn’t been in touch since. She was meant to call me regularly but hasn’t, so it was quite a long catch up. She asked me about therapy referrals, my social worker and psychiatrist. I told her there wasn’t much to say. Therapy referrals take forever, my social worker is still useless and I don’t see my psychiatrist until tomorrow.

She asked me when my last occupational health assessment was. It was over a year ago, so she said she will look into that again. I don’t know what an OH assessment will achieve. I get the impression they only want me to go so that work can say they are doing something to help. I don’t think there will be any pressure on me to get back to work, but I may be wrong. I guess it depends on the doctor I see. I have the same fears I had about the ESA medical. Fears they will tell me that I am making it all up and should just go to work.

If I do go, I wonder if I will see the same doctor as last time. He seemed to be pretty knowledgeable when it came to mental illness and was the first medic to suggest that Bipolar Disorder was a possibility. Shame it took a further 7 months before an agreement was reached on that topic. When I’d brought up his thoughts later with other doctors they didn’t seem interested. I guess they wanted to make their own decisions.

It may be useful to discuss work though. I haven’t managed to get much of an idea from the CMHT about when they think I will be ready to go to work. I am going to try and talk about it with the psych tomorrow. Dr N keeps asking me if I’ve heard anything from HR or whatever, but there hasn’t been anything to tell. I told him about my medical result too and I think he was a little surprised I’d been placed in the support group, although I think it also told him how ill I’d been on the day of the medical. I am not sure he quite understood how bad it was when I’d told him before.

The other thing R mentioned was regarding our company Employee Assistance Programme. I was told that they had been running a CBT trial and maybe I should consider asking about it. I told her I was pretty skeptical about CBT, but it could be useful to have some contact with a therapist whilst I am waiting for the NHS to do something. I agreed I’d give them a call anyway.

I was on the phone to the EAP for ages. First of all someone took my details and asked why I was calling. I explained I’d been told about CBT by my HR rep. She explained that they only offered telephone and online CBT (I’m guessing Beating The Blues!). I told her I wasn’t sure about that, but she said she’d put me through to the counselling team for an assessment and to discuss what might be helpful.

The counsellor was lovely. I explained I’d been on long-term sick leave for mental illness and that HR had suggested I got in touch. He asked me for a potted history, which I gave him as quickly as I could manage. At the end he just kinda went “oh, blimey”. I mentioned I’d had CBT whilst at The Priory and he asked me what I thought of it. I was honest and said that I was pretty skeptical and generally thought it was common sense, useful for mild depression, but ineffective for me. He asked me why I’d even bothered calling then, which was a sensible question. I said that I guess I thought it might be useful to have some contact with therapy whilst waiting for the NHS. Apparently his assessment of CBT was similar to mine and he didn’t think online CBT was going to be much help. He explained that usually a case like mine would be too complex for them to consider, but he wanted to help. He suggested that because I am waiting for long-term support, but I’m not getting the help I need currently, he felt it might be possible to refer me to the face-to-face service temporarily. It would only be four assessment appointments, but it might help me to work out what I want to work on when my NHS referral actually comes through. I agreed that this may be helpful. He asked me more questions then. Mainly about risk and safety. He stressed that his boss wouldn’t allow him to go through with it if they felt I was at too much risk. I had to give him the assurance I would be safe for the next four weeks, which was difficult even now. I am keeping myself safe at the moment, but I don’t know if or when that will change. At the end of the call he explained he would need to ask his boss to authorise my case, but hopefully it would be okay and then he wished me luck.

I am awaiting the phone call back to arrange my first appointment. He said if his line manager had refused he would call me back straight away and I didn’t hear anything, so I’m hopeful. I do think it could be good to just see someone for a few weeks. I don’t trust my social worker and have very little other support. In some ways I’m hoping it will be the same therapist I saw through the EAP back in April/May 2008, but I don’t suppose it will be, but you never know.

I need to go now. I have more to write, but no time. My bloke is going back to work part-time and I have the psychiatrist tomorrow. I guess I will update more soon.

The ECT Experience…

Whilst I was having ECT I never really wrote about it. I was in hospital with only mobile access to the Internet. I was exhausted, often in pain and not really in the mood for writing. Recently though I’ve been inspired by this blog and Seaneen’s appeal for ECT info to document my experience. I’m worried that if I don’t do it now, I’ll forget what happened all together.

Ultimately my experience with ECT was a failure. I had 11 treatments, some unilateral and some bilateral. I barely responded at all and in the end we gave up.

ECT was seen as the last resort. I was about as severely depressed as you can get and no one knew what else to do. I wasn’t sure about having it, but at the time I wrote that anything was worth a try. I think I was so depressed I didn’t really care what happened to me. I know I secretly wished it would go horribly wrong, so overwhelming were the thoughts about death.

I went into the treatment with a smidgen of hope as at least we were trying something. I felt little, but I knew my family wanted it to work. We had to believe it would work, as the alternative was too horrible to comprehend. Other patients at The Priory had been through ECT and come out the other end much improved. ECT had been lifesaving for them and I hoped it would be the same for me.

The procedure was a lot less scary than I had feared. We were woken early by the nurses, our blood pressure and temperature taken, then we were bundled into a taxi with the nurses over to Cheadle Royal. The Priory doesn’t have an ECT suite any more, so treatments were taken there.

There was a waiting room, where we’d sit waiting our turn. There was usually three or four of us being treated at the same time. Three from The Priory and a day patient from elsewhere. Eventually we’d be called into a prep room, where a girl would wash our forehead and neck and attach EEG stickers. Next we entered the treatment room. We’d climb onto a bed and Dr Shock would ask us how we felt. We would be attached to the monitors and then the anaesthetist would take my hand and try to insert a cannula.  This was where it got difficult to me. My veins are small and deep and finding one proved near impossible at times. Multiple attempts, hands like colanders and a number of bent needles later and we would be ready to go. After a few treatments like this, the anaesthetist ordered some microwave lavender bags, which I’d be given to warm my hands. ECT quickly became associated with the smell of lavender.

I’d never had a general anaesthetic before my first treatment and I didn’t know how I’d feel. I soon got used to the feeling. Twice a week for nearly 6 weeks, you have little choice. The liquid would ooze into my veins. I could feel the cold liquid flowing in my hand and then I’d drift off into a blissful sleep. When I was ill I’ve never had any other sleep as nice as that. Next thing I knew I was in the recovery area, oblivious to what went on whilst I was asleep.

Throughout my treatment and since, I’ve always been curious to see what happens in between those moments. I often wondered about asking if I could watch someone else go first, but was certain I’d be turned down. I know they apply a current to my brain and I have a fit, but what does it actually look like? Who does what?

A few times I awoke covered in blood. The cannula would slip out during the fit and I’d be left with a red tshirt. The first time it was a bit of a shock and slightly scary, but once I knew what had happened it was okay.

As we woke up, our vitals were taken regularly. Each of us would have a nurse, who would keep a close eye on us, administering pain relief if required. It was always required. An hour after our treatment we would be allowed up and given tea and toast, or water and toast in my case. Then we were bundled back into the taxi and taken back to the ward, where we usually went straight to bed.

At the time, the side effects weren’t so bad. I usually had a thumping headache, more so after the bilateral treatments. Sometimes I would ache all over. My jaw was often painful. My appetite was normally dodgy and I felt queasy from the anaesthetic. My memory seemed to be pretty much in tact. I’d written all my passwords and things down before I went, but I don’t think I ever needed to refer back.

I didn’t really mind the treatments, but I was frustrated at the lack of response. The night before each treatment we’d be given the BDI and would tick the boxes and I couldn’t see any improvement. I know my scores did improve a little, but one or two points is nothing when it is scored out of 60-something and the miracle I was hoping for never materialised. There were a couple of days after one of the early sessions where I became quite hyper and agitated for a short while, but that didn’t last either and could have been down to something else.

One of the others having ECT with me improved fairly rapidly, which was great news for her, but I remember feeling a little jealous. She was discharged from hospital before I’d even finished the treatment, although I think she had a couple of sessions whilst she was an outpatient. The other person improved gradually, but she did improve. She would have a boost for the first day or two after the treatment and the improvement would ebb away, but over time it seemed to ebb away a little slower. ECT definitely helped her to get better, although I don’t know how she is these days. I seemed to stay the same regardless. ECT wasn’t working for me.

Dr Shock would ask me each time how I felt and I never knew what to say. She would tell me I looked brighter, but it felt like she was only saying that to convince herself it was doing some good, not because she really believed it.

Towards the end, I knew we were running out of steam. I could see the medics were giving up. When the decision was finally made I wasn’t surprised but I was disappointed. I felt like a failure and I felt annoyed that it hadn’t worked. It was meant to be the cure and it failed. I felt like I should have tried harder to make it work. I worried it was my fault and that everyone thought it was my fault and that I just didn’t want to get better.

There is something to be said for it. It may not have actually lifted me out of my depression, but I think it did help keep me safe whilst I was at my worst. I suspect my insurance wouldn’t have renewed the funding if I didn’t need to be kept in hospital to have the ECT and at least whilst I was having the treatment I was often too exhausted and unwell to act upon the suicidal thoughts that were so strong at the time. Maybe if I wasn’t being told to wait and see if it worked, then perhaps I’d have been more determined to kill myself. I don’t know. I guess you never can know. Maybe I’d have been even worse if I hadn’t have had it, although I don’t know how much lower I could have got.

After the failure, came the assessment from Dr P and the diagnosis of Bipolar II Disorder. It was suggested that my lack of response to “traditional methods of treating depression”, showed that I wasn’t suffering from “straight” depression. I had suspected that for a long while before, but I don’t know why it took ECT to decide this as I know ECT can be used to treat Bipolar Disorder too. I am grateful for the ECT for accelerating this diagnosis, but it seems an awful lot to go through just to get another assessment.

The long term effects of ECT have only been showing themselves over the last few months. I didn’t think the memory loss was significant, but as you go through life there are reminders of what is missing. People mention things that happened and I have no recollection of them at all. Silly things like ordering a meal in a restaurant commenting that “I’ve not had this before”, only to be told that I did back in April when I went there with my parents. Not only had I forgotten my order, but I’d forgotten I’d even been there with my parents.

It’s not just from the treatment period either, but before too. A lot of last year has disappeared and I only have my blog and my family’s memories to remind me. Distant memories that were once clear are now fuzzy or gone completely. I have lost a lot more than I’d realised at first. They say that the memories will come back with time, but I seem to be forgetting more, not less. I don’t know if it’s just because as time goes on I find out about more of what is missing.

I don’t think my short term memory is that bad. I am forgetful, but I’ve always been a little. For most people it is the short term memory that is worst, but I seem to have got off fairly lightly on that front. I guess this is something.

I’ve alluded to this at other times, but I think ECT has had an effect on my thinking ability too. It’s hard to know for certain, as depression can stunt your cognitive abilities too, but I am not as sharp as I used to be. My partner often says that I’m slow. I am not very quick on the uptake at times. I find it harder to think and harder to solve problems. My arithmetic seems worse than before.My concentration is poor. Even when I’ve been a little high, I don’t feel as capable as I did before. Things I used to find easy can be a challenge. I feel like I’m a little blunted. I pride myself on my intelligence, yet I don’t feel as bright. I wonder if I’ll ever regain what I used to have and if this will improve.

Along with the memory and cognitive effects, there is a physical side effect. The right-hand side of my jaw has been problematic ever since. It locks and it grinds. Sometimes I can’t open my mouth at all. Other times I get shooting pain right through the side of my head, where my jaw is stuck or out of place. I don’t know if there is a solution, but I suspect I will be stuck with this for ever now. It may not be anything major, but it can hurt and is annoying.

I don’t think I’d mind these effects at all if ECT had worked. If I was now stable and free of depression these issues would be worth it. It’s just that for it all to be in vain, it seems a lot to go through for no gain.

I am still disappointed. ECT had been that final resort and was something I could hold in my mind as a possibility for change. For me, I always need to know that there is another option and this was just another one that we have exhausted. When I have run out of options then I will really give up. I don’t think I’d go through it again, even though for some it can work a second time when it had not the first.

All that said, even though ECT didn’t work for me, I still wouldn’t discourage people from trying it. You have to weigh up the potential benefit with the possible effects, but if it works, I think it is worth it. It is usually only used when all else has failed and in that case what else do you have to lose? I have seen it work for others, I am just jealous it didn’t for me.

*Sigh*…

I don’t really know what to say. I have posts I want to write about specific topics, but I don’t know where to start. Head is a bit fried really and I’m just so unbelievably exhausted.

My social worker came yesterday. I had forgotten she was coming and had a bit of a panic when my phone alarm went off. To put it bluntly, she really is full of shit. She spouted all this stuff about positive thoughts and recreating brain pathways and activating synapses, when she clearly had no idea what she was talking about. She was basically waving the CBT stick at me, but tried to dress it all up in technical language and scientific explanations. I am fed up of her suggesting that all my problems will be fixed if I just apply some CBT, think positively and buck my ideas up. I have done a lot of CBT in the past, most of which is common sense. I’ve been applying CBT methods myself most of my life, long before I even knew what CBT was. How do you think I managed to cope with the depression of my childhood, teens and university years? Things have got worse and these methods just aren’t enough any more. CBT doesn’t work for everyone. There is limited evidence to suggest that CBT works with Bipolar Disorder and severe depression (and apparently that’s what it is) anyway, but still they persist. Maybe if I just try that little bit harder it will? Maybe it’s my fault it doesn’t?

Yesterday, I also managed to cut my wrist. This was an accident involving some wire netting and our fish tank. It’s a clean cut, about two inches long, right across the top of my wrist. The blood poured and I felt this massive urge to make more. I’ve not self harmed at all for a couple of months,  but it was a clear trigger. I’ve never really cut. A couple of times perhaps, but it’s not my chosen method of self harm.

When I was last self harming I don’t think I wrote about it, not wanting to alert my partner to the fact. There was a hammer lying around the house, not put back in the garage after some DIY. I was routinely hitting myself with it, all over my body. Sometimes it would bruise, but these could easily be blamed on the dog. She’s bruised me herself enough times. Other times it hurt like hell, yet didn’t leave a mark.

I can’t remember why I started again. I just felt the need one day in the summer, saw the hammer and that was it. Actually I don’t know if the hammer or the need came first. Maybe I was triggered by it then.

This seemed to help for a while. It released some frustration. Things carried on for a couple of months, but then it stopped as quickly as it started. Again I don’t know why. Soon after, we tidied the garage and the hammer went back.

Now I am struggling with the urge again. I want to hurt myself. I don’t know why. I don’t even think it would help. I just want to do it. I have resisted so far and I will keep resisting but the thought is niggling away. I wonder if I will ever get away from the temptation to hurt. I seem to stop and start without rhyme nor reason.

A little speedy…

What’s this? Another post!

My mood today has been strange. I woke up this morning with my head racing, thoughts flying all over the place, a preoccupation with work and a desire to do a million things and make a million plans. The verge of hypomania, somewhere I’ve not really been for a while.

The preoccupation with work is strange. I dreamt about going back to work and woke up thinking about all the things I could be doing if I was there. I miss it. I wish I could go back. I have projects I want to get on with.

This speedy mood has been coming and going all day. Concentration coming and going. Thoughts racing.

At Creative Remedies I think I was a little high and probably a little annoying. Talking too much and I was getting bored of my painting too easily. I didn’t know what to do with myself.

Even now I’m jumping from one sentence to another and not even finishing paragraphs.

I wonder where this is going. I’m praying for it to be the end of my depression, yet the rapidly recurrent suicidal thought intruding into the rest of my thoughts suggests it isn’t. It definitely feels like the closest I’ve been to a “good” mood, even if my head feels like it’s spinning too fast, but there is still that dangerous, destructiveness mixed in. I don’t know where I am. I expect this is just rapid cycling showing its head and no doubt it will be gone as suddenly as it arrived, but we will see.

At the moment my mood isn’t physically obvious, but my mind feels like it’s being thrown about and shaken up. I am keeping the agitation down, but I don’t know how long that will last. I am trying to keep myself in check.

Tomorrow I have my ESA medical. I’m worried. I don’t think this mood is going to be helpful. I can’t really think and don’t know how to describe my worst days. I don’t think I seem depressed, which isn’t going to help. I guess I’m there for bipolar disorder, not depression, but it is the depression that stops me working. I don’t even know if I want to have “limited capability for work”. The way I’m thinking at the moment I want to go to work.

Argh!

Tiresome…

Another week has passed and I’ve not written again. I don’t know where all the time goes.

On Monday someone came from Birmingham University to interview me for Mood Disorder research. It didn’t take as long as I thought it would, but that may be because I was hardly verbose. I just generally ended up saying “yep” to every question. There were questions about your family situation and stuff. Then there was a series of questions about depressive symptoms, all of which I have experienced at some point or another. She recorded that part of the interview and the following part about mania. There were questions about agitated depression and dysphoric mania too, both of which I’ve experienced and most of my depressions are agitated.

There was a section on psychotic features, most of which didn’t apply, but there were some things mentioned that I’ve experienced and never really considered psychosis before. Those dissociative experiences and weird feelings where the world don’t quite feel right were given air time. There are times when I lose all sense of size and relativity. Paranoia too, but I guess everyone experiences that at times.

There were questions about medication and treatment. I realise now that I forgot a load of drugs that I had been on. I don’t know if it’s worth emailing to let them know. It felt weird when there were questions about hospitalisation and ECT and it made me realise just how ill I have been.

Her list of symptoms and questions made me realise that I can’t deny having Bipolar Disorder. I had experienced pretty much everything mentioned for both depression and mania (although generally not as severe on the manic side). I sometimes wonder if I’m actually just plain depressed as I spend so much more time on that side of the coin, but I can’t deny that I’ve been manic or at least hypomanic plenty of times too. More so, it made me realise that I am really quite severely ill. I often think because I have Bipolar II disorder, rather than I, it means I’m not that bad, but I guess that isn’t really the case. I’ve been lucky to have not had any real psychotic experiences and severe manic episodes, but my depressions are pretty much as severe as they get and I’ve been through a lot treatment-wise too.

At the end the girl tried to take my blood, but failed. I have really terrible veins. Small and deep. She’s given me a pack to take to my GP so they can take it instead. I wonder if they ever will find a gene or two that causes all of this.

Afterwards I completed the questionnaires she left me. Millions of ticky, or rather crossy, boxes. A lot of personality type questions about honesty, social anxiety and esteem. A section on events proceeding first experiences of illness, which for me was pretty much uneventful. No bereavements, abuse etc during my childhood.

Tuesday was fairly dull, except my father popped in for a couple of hours. He was in the area for a trade show so came over for dinner in the evening. We went to the new Fish and Chips in Alty and then came home and had cake. Good food and it was nice to see him for a wee while.

On Wednesday I saw Dr N for my fortnightly visit. I was pretty honest with him about how the past couple of weeks have been. Things have gone steeply downhill since a month ago and he was concerned. We talked about self harm and suicide again. We also talked about my social worker and seeing the NHS psychiatrist. He warned me that the NHS psych will probably try and get me to try an anti-depressant again especially considering the drop in mood over the past couple of weeks. He made some comment about “that’s all they [NHS psychiatrists]  seem to do”, which amused me. I’m worried about this though. I don’t think it is a good idea considering how bad things were when I was on them, but then I wonder because things have not exactly been great without.

I forgot to take the blood pack with me, so he’s going to do it next week when I’ve seen Dr G. No doubt I will have a meds increase to sort out as well.

This morning I had a visit from J, my social worker. It was a long one and I found it tiring. I tried to be honest with her too, talking about the increase in suicidal thoughts and the agitated anger outbursts that have been happening for a while. It was shaming to talk about wanting to hurt people and myself. I felt uncomfortable and was fidgeting a lot. She was pushing for info though and I felt obliged to supply.

I was alarmed when she mentioned the crisis team and hospital. I managed to calm her down and say that I’ve managed to keep myself safe over the past couple of weeks and I think I will be able to going forward, but even still. She agreed with me in the end and said she will not take action, but she kept reiterating the fact we could get the crisis team out. I don’t trust the crisis team and I certainly don’t want to go through the NHS inpatient experience again. I don’t want to put my family through that either. I am scared that my bloke will be shocked it was even considered. I have not really let on that things have been much worse in the past fortnight. I have to phone her or ALERT if things get worse again, although I still don’t have their number so not sure how to do that.

She wanted us to talk about what her role was and what I want her to do for me. I didn’t really have an answer as I find her a little useless and wonder what the point of her appointmesnts is. I was keen for her to liase with other services and make referrals for me though. We discussed other things out there, especially therapy. She is getting me on the list but warned me it will be an incredibly long wait, even just for an assessment. She also suggested Beating The Blues in the interim, but it’s more CBT and I’m not sure Kate had much positive to say about it. I start Creative Remedies next week and Positive Thoughts in a couple of weeks so we shall see how those go. She also suggested I tried the Day Centre in Warrington. I’ve been once before, but was too scared to talk to anyone there and left after 5 minutes reading the notice boards. She suggested she took me in and introduced me, which may be better. I said I will see how Creative Remedies go first and then decide.

There was a lot of boring stuff about setting expectations for recovery and doing things to help. It was a repetition of much of what she’s said before and got quite tiresome. She talked a lot about my work and how if I am ever to go back things will have to be different. We talked about the competitive nature of the company and she seemed appalled at the way things work and shocked that I accepted it. I think she really wanted me to consider leaving and working elsewhere, but didn’t dare say as much. I know things will have to be different, but I am not sure I want them to be so different I leave my job. We will have to see.

This afternoon I need to get down to some serious baking. My friends who get married tomorrow have asked for contributions to the buffet and bar instead of traditional wedding presents. Hopefully I can knock up some yummy contributions and everything goes well.

Hope everyone out there is okay. Take care folks xx

Mad Men…

Again it has been 10 days since I last wrote. I don’t know where the days have gone.

I saw Dr N last Thursday. Just a routine appointment to pick up my scripts, but it was good to talk. He asked the usual questions. Mood, suicidal thoughts, self harm etc. He seemed concerned. More so than in recent appointments.

He pointed out that he could see my scalp was in a bad state. As well as the trich, I also struggle with skin picking or Dermatillomania to give it the technical name. My scalp gets the worst of it. Every day, usually at night, I pick and scratch at my head until it bleeds. It’s covered in terrible wounds, some a few centimetres across. My hair hides the worst of it, but it’s got so bad that it can be seen at the moment. It’s always worst when I’m not sleeping well as I tend to lie awake scratching my head to distract myself from the insomnia.

I have done it for years, longer than the hair pulling even. I think it started when I had chicken pox as a child and I would itch my head. I was maybe 8 or 9? I can’t really remember.

I was shocked that Dr N noticed and mentioned it. I’d confessed it to him a long while ago, but he had never brought it up before. I tried to change the subject pretty quickly and felt uncomfortable that he had seen.

Both the skin picking and hair pulling make the hairdressers a nightmare. My hair is thin in places and there are bits where it is really short where I’ve damaged the scalp so badly it doesn’t grow properly. The scars and cuts are awful and would make most hairdressers flinch. I’ve been asked what has happened so many times and I don’t like making up lies, but I’m too ashamed to tell the truth. One hairdresser even insisted on putting on gloves when she saw the wounds, too afraid to touch them. I last had my hair cut when I was in The Priory, knowing that the hairdresser there would be understanding. I often go over 6 months between a hair cut and it’s been a year before. I try and avoid it as much as possible, even if that means my hair looks rubbish and gets far longer than I’d like. My hair really needs cutting, but I just can’t face it.

Other than the trip to the GP, very little has happened. I’ve spent lots of time watching back to back episodes of Mad Men. If you haven’t seen it, it’s an American TV series about advertising executives during the 1960s. Over here it has been shown on BBC Four, but that doesn’t mean it’s dull and serious! I loved it the first time round, but I watched a lot of it whilst I was in The Priory and ECT has erased most of it from my memory. Watching it again has been a little weird as it brings up memories of those times. I started watching it again because I saw that Series 3 has started in the US now. Will be good to have more to watch. It kills a few hours and takes me away from this world for a little while.

In other news, my bloke may be going back to work a little part time. He left his job to care for me since I came out of The Priory last May. His replacement has quit suddenly, so his old employer have asked if he can do a few hours until they can find someone else. He went in on Tuesday morning, but hasn’t been in again yet.

For me, this is quite exciting. I feel that I am getting a little independance back, being left alone for a few hours. I miss the time I got to myself when he was at work. It is hard being together 24/7.

It is a challenge though. I am still fighting the thoughts and the time alone makes them harder to ignore. It feels like tempting the devil. The monster tells me that “you can do it now, you know you want to”. Over the past few months I’ve had little opportunity to act on my suicidal thoughts. These few hours alone change that and I know there is a risk. My bloke worries about it and I don’t want him to, but I know his worries are justified. I wish I could give him a 100% guarantee that it won’t happen, but I don’t think I can. I am in control to a point and will fight as much as I can, but I can’t guarantee that I will win. The thoughts are intrusive and often impulsive and I know I could act on them before I even think about it. They can spiral out of control and it can be hard to stop yourself when you get to a point. I know I need to hit the panic button before things get that far. I’ve told him I will, but I can’t even guarantee that.

Despite the risk, I still want him to go. I felt bad that he left his job for me as it is. I want him to be able to work again. I can’t be watched 24/7 forever. I am going to have to take this step eventually and it might as well be now. I could be waiting the rest of my life if I waited for the thoughts to go away. I don’t want to let the thoughts win. If he stays at home with me I am doing that. I am letting the thoughts control my life.

Generally I’ve been pretty low over the past few weeks. I’ve been lower, but not much lower than this. I am carrying on, because I don’t know what else to do, but it’s a struggle. Most of the time I just feel so empty and numb. There are still a few better moments, but less than there were a month ago and the average score is down. There are still worse moments too. Fits of rage, agitiation, arguments. There’s this little bubbling pot and occasionally it boils over.

I am disappointed that improvement has stalled. It feels like I am failing. Maybe I’m not trying hard enough to get better. Maybe I am just stuck in depression. There had been seeds of hope, but I am not sure they will propagate. I don’t want to give up on the Lamotrigine as it has been far better than anything else I’ve tried, but it’s just not doing enough. It seems I am heading into a long period of mind-numbingly dull depression, with only the occasional painful period of agitiation thrown in to liven things up. I guess I am already there and I don’t see any way out yet. I don’t know what all this means. I guess I will have to talk to Dr G when she’s back from holiday and see what her thoughts are. I suspect she may eventually give in and resort to the Lithium. She’s threatened it often enough.

I don’t have all that much coming up to look forward to.

Like Seaneen, on Monday I have someone turning up to interview me for the Cardiff and Birmingham Universities’ Bipolar Disorder study. I am a little scared about going over everything and hope it won’t make my mood worse. I feel forewarned having read Seaneen’s post, so it may be a little easier, but it’s true that it isn’t fun for anyone reliving your worst moments. I do think it will be interesting though and I definitely want to support research where I can so hopefully it will be okay.

I see the chocolate teapot again on Friday 11th. She’s actually done some stuff at last. I finally got the referral through for the ALERT service (Out of hours telephone support). They haven’t called me to give me the number yet so I can’t use it, but at least she’s contacted them. I also got the dates through for the Creative Remedies groups. I start on 16th September. There’s a performing arts group and a visual arts group, both lasting 2 hours a week, so that will give me something to do.

I’ve also got a wedding to go to on the 12th, my NHS psych appointment on 22nd and an ESA medical on the 24th. I’m really dreading the latter. I am scared they are going to tell me I’m not ill, I’m just making it all up and I should go back to work. I’m scared they will think I’m a fraud. I did the questionnaire really quickly and sloppily as I just wanted it over and I’m worried now that I didn’t say enough. I have read so many horror stories lately that I am quite worried, but I just hope I can get through it. I am claiming under the youth rules as I haven’t paid enough NI and can’t claim income-related due to my bloke’s savings. Unfortunately they didn’t take the youth rules into account at first and rejected me, so I’m having to appeal. Usually you only get a medical after you have been claiming for 3 months and although it is over 3 months since I applied I haven’t been paid a penny yet due to the appeal. I just hope it gets sorted out soon. Benefits are a nightmare. I don’t see how anyone gets away with claiming when they are not entitled. It seems that most people who are entitled can’t even get them.

Anyway, enough for now. If I posted more often they wouldn’t be such mammoth posts. I shall try.