A Little Clarification…

My last post, Distressing Diagnosis… was a little on the rushed side and basically unfinished when I posted it. I knew if I didn’t publish it when I did, I wouldn’t get the chance for a while, but I kinda wish I’d held back. I’ve been back and edited it a little, but it still doesn’t say everything.

Edit: (17/03/2010) – I’ve actually ended up reworking this post quite a lot too. I didn’t read it back yesterday and since then I’ve realised it was all over the place and made little sense. It is a little better, but I just find this so hard to write about objectively. I am struggling with it all.

Lets get one thing straight. Dr M isn’t a horrible person or a bully. In many ways she’s actually quite nice and well meaning. She is trying hard to help. I can see that and I appreciate it.

She said she doesn’t want to do anything that will make me worse, and she did agree to remove the diagnosis in my notes when I said it wasn’t helping. I guess I can’t really argue with that. I asked her to change her diagnosis and she agreed to do so. I don’t think she’s changed it in her mind, even if she has on paper, but that is at least something.

She genuinely thinks she is helping and that she is doing the right thing. She keeps saying that she will make me better and that the future is hopeful. She is always very positive and encouraging. Many patients probably really appreciate this approach, but I find it a little too much. I don’t see enough evidence to support her positivity and that can actually be damaging. It makes me lose faith and trust. I find that she can ignore the negative, which means I don’t feel like I am being listened to or taken seriously. Unfortunately she doesn’t seem able to recognise this or she is unwilling to adjust her approach.

She also gives me her time – lots of it. She tries not to rush her appointments and lets them take as long as they need to, even if that means she runs behind fairly often. One of my ward rounds was over 90 minutes long, which when I realised seems pretty incredible. She saw me regularly on the ward in addition to the weekly ward rounds. She is now seeing me fortnightly as an outpatient, as opposed to the huge expanses of time between each CMHT appointment (4 months!). This is a good thing. It is closer to what I was used to in The Priory and a vast improvement on my other NHS experiences. Usually they sit you down and before you know it the appointment is over and nothing seems to have happened.

There are certainly good points to her care so far. I think it probably is an improvement on my other experiences with the NHS, but there are issues and I am finding those hard to deal with. Overall though I don’t think she’s a bad psychiatrist. I am just not sure she is the right doctor for me and I am not sure I am the right patient for her. Things just don’t seem to be working.

I don’t think it helps that we just don’t seem to get on. She was not impressed with my initial request to not be patronised and I think that clouded her opinion of me right from the start. She doesn’t seem to understand my job and why I like it. She doesn’t seem to know how to deal with me questioning her. I have a real sense that she just doesn’t like me for some reason. There was one point that she pretty much said that she couldn’t get on with me in “real life”, although I can’t remember the context now. My bloke tells me that is paranoia, but I remember it because I was shocked at the lack of professionalism and was upset that she didn’t like me.

I know I can’t hold this against her though. People don’t get on with each other and that’s a fact of life. If she doesn’t like me then fair enough. I’m not sure I’d get on with her in “real life” either. It wouldn’t matter though if it didn’t affect our therapeutic relationship. I worry that part of the reason she has diagnosed NPD purely stems from a sense that she doesn’t like me. Is it because she thinks I’m arrogant because I didn’t want to be patronised? Is it because I don’t agree with her opinion? I fear that in many ways it probably is.

It’s always going to be easier to trust and work with someone you get on with and I am finding this hard. It was one of the things I found great about working with Dr G. We got on well and could talk about anything, not just my treatment. It felt a lot more therapeutic and less clinical, which I think is important when dealing with mental illness, which is so entwined with emotion. I miss the way things were with Dr G and I am not used to the change. I don’t see the relationship with Dr M ever being like that. I find it hard to talk to her and hard to trust her. I am meant to tell her how I feel, yet I don’t feel comfortable doing so.

I also struggle with the fact that she doesn’t seem used to dealing with patients who are capable of getting dressed, eating and general functioning. Even if you had just tried to kill yourself, said you felt absolutely terrible and were threatening to do yourself in, if you could get up and about, communicate, eat and drink etc. then you are not really depressed and should be discharged. There seemed to be little acknowledgement of the fact that patients hide how they are feeling and put on a mask. There was a lot of focus on the functional side of depression and little acknowledgement of the emotional side and how patients felt. I wasn’t the only person who noticed this. A few of the more functioning patients felt that they were always being pushed to go home, treated as if they weren’t really ill and made to feel like they were a fraud. One patient was discharged too early a couple of times because she always hid how she felt and seemed “well” but she ended up back in hospital within days. You would have thought they would realise this was a problem. I don’t think this is purely down to Dr M. There were unbelievable bed pressures and the nurses weren’t exactly great at observation, but at the end of the day she makes the decision to discharge.

I wondered if this was because she is used to treating patients who aren’t functioning – those who are catatonic, staying in bed, barely speaking etc. In many ways these patients probably are more severely depressed, but that doesn’t mean they are more “worthy” of being in hospital. Non-functioning patients are a lower risk because they aren’t even capable of hurting themselves, where as a functional patient who is dealing with distressing thoughts needs to be kept safe. There didn’t seem to be much acknowledgement of this. I always felt like I was being told my problems weren’t important and that it didn’t matter how I felt.

Maybe Dr M has a problem working with me and other patients in a similar situation because she just finds it easier to deal with patients that do as they are told and don’t answer back. I guess anyone would find it easier to deal with people that follow blindly and don’t question things, but it is wrong to judge those that aren’t like that. Maybe it is as simple as a power trip. She likes to be in control and feels threatened when that power balance is upset? I don’t know.

It was also a common complaint on the ward that she thinks she’s really in touch and that she knows what you are thinking, but the reality is she’s often a long way off. Sometimes you get this hint that she might actually understand and then she says something else to contradict that five minutes later. It can be quite frustrating because you get this feeling of hope that she is listening and understands and then you get disappointed. You often feel like she is jumping to conclusions or judging you and I find it hard to talk to her. I don’t have this problem with Dr N and I never had it with Dr G. They listen to you and seem to understand what you are trying to say.

I think my feelings towards the NPD diagnosis have made it hard for me to work with her. I am offended and upset by it and I associate her with this distress. It feels like a personal attack and I find that hard to deal with. I don’t want to be considered as narcissistic, arrogant, self-serving etc. I want to be a “nice” person, someone that people can trust and get on with. I read the descriptions of people with NPD and I am scared that anyone could think I was like that. I am disgusted with myself that someone can think I am the horrible person that the NPD diagnosis describes. I can’t handle my thoughts and emotions around this and I need someone to direct those frustrations at. I guess naturally I will direct them at her. As much as her views of me may be misguided, my feelings towards her are skewed because of my feelings around this.

I still don’t think the NPD diagnosis is very accurate (although I do understand to some degree why she may have diagnosed it). I certainly don’t think I meet the criteria and I think she was wrong to diagnose it in the way she did. I really question her judgement and it is going to be hard to work with that in mind.

Personality disorders seem to be her diagnosis of choice and that worries me. She seems to be giving anyone that doesn’t respond well to medication, functions “too” well or who doesn’t fit in the usual boxes, a personality disorder. There was someone on the ward who was diagnosed with Bipolar Disorder many years ago and she had seen multiple psychiatrists who agreed with that diagnosis. Dr M began treating her, quickly questioning depression and suggesting her personality was to blame for her thoughts. There seemed to be no logical reason for this, only the fact that she functioned fairly well and medication had stopped working.

I guess in many ways a PD diagnosis means the emphasis is on the patient to get better and not the doctor. If the patient doesn’t improve the psychiatrist doesn’t need to justify herself in any way. The patient is also fairly powerless because any questioning of the diagnosis could be considered a symptom of the disorder. “I’m the doctor, you’re the mental, now do as you’re told”. It probably helps that there is enough of an overlap between symptoms of a personality disorder, general life experience and other conditions that there will probably always be some evidence you can use to back up your opinion.

A little off topic perhaps, but I do still want a second opinion on the diagnosis, but I don’t know how I go about getting it. With the diagnosis lifted from my notes, I don’t know where I stand. My personality is now “under investigation”, but does that mean she is going to change the way she thinks about me? I doubt it. Do I just wait and see what happens when the therapy referral comes through or do I try and get things clarified now? Presumably there are still mentions of the narcissism on my notes, so will that influence things in future?

I wonder if I should ask about the Affective Disorders clinic in Manchester. A couple of people have suggested it to me and they have someone who focusses on “complex needs”, who may be able to comment more on the relationship between my mood disorder and any personality problems. There’s also the CUPS service in Cardiff, who has a similar service offering second opinions to anyone in the UK with complex mental health issues. The problem with these services is they require referrals from your consultant and I don’t know how to ask her, without sounding like I don’t trust her opinion.

I don’t know.

I still don’t really know what to do or think about it all. In some ways I know I should just try and forget about it now that the problem label has been rewritten, but the therapeutic relationship thing is a problem. I still have to see her every couple of weeks after all and I don’t know how things are going to work.

I guess my conclusion is though that Dr M isn’t all that evil. It’s the NPD diagnosis that’s the problem and it is going to be an elephant in the room for a while I think.

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

Discharge…

So it is official. I am being discharged from The Priory by Dr G. I contacted her yesterday about the outcomes of my NHS appointment and her secretary called me back to say she will sort out the discharge paperwork and copy all my notes to send over to the CMHT. I knew it was coming, but it was still a little weird to know the decision has been made and put into action.

I am really going to miss her support. In a couple of days it will be a year since I first met her and a lot has happened in that year. She has been there through everything and has done her best to help. I wouldn’t be here by now if it wasn’t for her. On many an occasion my promise to her to keep going has stopped me acting. I am not going to say I’m grateful for that, because I still wish I wasn’t here, but I am sure my family are grateful.

Mood wise I’ve come back down from last week. Things started to calm down on Friday and by the weekend I was back to numb, monotonous depression. I’m missing the buzz from last week and disappointed that the promise of hypomania hasn’t been fulfilled, but in a way I am glad it is over. Impulsivity is always a real risk when I am wired like that. The flat depression isn’t fun either though. I am so bloody bored of feeling like this. Able to function, but wishing I wasn’t. Stuck in some kinda half-existence, where I go through the motions but feel so little and care even less. In a way it is better to feel worse, because at least then you are feeling something.

Today I was interviewed for local radio. Next week they are focussing on mental health in the run up to World Mental Health day on 10th October. The BBC came to Creative Remedies this afternoon as they want to feature the scheme on one of the shows. I was a little surprised when the staff asked if they could interview me. I had no idea what I was going to say, but managed to get through it and hopefully with a little editing I will sound half-coherent. I’m not quite sure why the outreach team picked me as I’ve not been going for long, but I guess I come across as fairly confident and talkative in sessions, where as a lot of people are quiet and reserved.

The team were asking me about ideas for advertising and improving the scheme. There are a lot of things they could do with it so it will be interesting to see how things go and what suggestions get implemented. They also want to set up a website about the sessions and to have somewhere to display our work. Of course I have experience in that area, so it looks like I’m going to work on that with P, one of the outreach workers. I think the team are quite keen to make use of my skills!

Not much else to report. Life goes on.

NHS Psychiatrist…

Bloody hell, the CMHT is in a weird and slightly scary location. The building is a dilapidated old school on a council estate, with rusty railings and dodgy damp portacabins. It was in one of these cabins that I had my appointment. My social worker met me and took me in. The ceiling was falling down from damp. It really shows how much priority mental health care gets within our social services and NHS. Most of the other council buildings are shiny and swish.

It turns out that the NHS psychiatrist I saw today has seen me before, although I wouldn’t have known if he hadn’t have told me. Dr D assessed me in February after my massive overdose and arranged for my admission to the NHS ward back in February. I don’t remember the assessment at all, but vaguely remember his face.

The appointment was fairly routine. He asked me about discharge from the ward, what happened at The Priory, what has happened since. He asked about current mood. He asked about history, self harm, suicide, family history, childhood, education etc. All the usual things. It was a chore going over it all again. The more often I do this history thing, the less I manage to cover and recall. I just skip over things because I have said them so many times I forget what I’ve told who. I think he got the main points though.

He didn’t change my medication at all, as my social worker had warned me. He seemed to think that my current meds were doing some good and that we should persevere. I didn’t know if to ask about Dr G’s planned increases up to 300mg. I think I should have, but I couldn’t find my tongue. He said my meds would be reviewed when I next return to the CMHT.

One positive outcome was a referral to therapy. My social worker needs to get this done, so I’m not holding my breath considering her previous record, but we shall see. He said the waiting list is extremely long, but the sooner the referral is done the better. As I have covered most of the shorter therapies at The Priory, especially CBT, he said they probably won’t bother with these, but he was keen for me to have psychodynamic therapy. He thinks I will need to be in intense psychodynamic therapy for years. I had expected to do some psychodynamic stuff as Dr G had mentioned it in the past, but I thought it would be for a few months. I didn’t think I would need years. I guess I never really saw the whole psychoanalytical, lie on a couch and talk about your childhood thing as for me.

I wonder what issues he thinks I will need so long to deal with. I started on some psychodynamic stuff at The Priory when I did “Life Maps” and I grappled around for some reasons for all of this, but my childhood was uneventful and I don’t know what problems there are to find. I know there are some relationship issues with my mother and I was bullied in primary school, but aside from that I am unsure. I don’t think these are deep enough and I see my condition as largely chemical.

The plan is for me to continue on these meds, wait for a referral to therapy and see him (or someone else on the team) again in around 8 weeks. This wait is better than I’d feared but it still seems a long way away. I find the future so hard to comprehend I don’t know how I will get through to then. I was told to continue to see my social worker and to use the ALERT service, the CMHT in hours, the crisis team or A&E if things get worse, but I don’t know how easy that will be. I tend to suffer in silence and hide how bad things are getting, even now after everything.

I’m glad the appointment is over. I was so nervous and didn’t really know what to expect. The next step is to contact Dr G and tell her what happened. I think she will be glad about the therapy as she had wanted to find me something before. I am scared about letting go of her support, but know I will have to eventually. Dr D seemed a little concerned that I had still been seeing a different psychiatrist and I think he wanted that to stop. I understand it would be complicated. I guess I’ve always got the option of going back to Dr G if I felt I needed it. Dr D asked me to contact Dr G and get her to send a summary of my care at The Priory and a date for which I will be discharged by her as well as a list of the therapy I’ve had at The Priory. It all seems quite final.

p.s. I updated the My Story page today.

A long week…

A lot has happened in the past week. I kept meaning to write, but time got away from me.

I saw Dr G last Tuesday and was disappointed. It was a fairly pointless appointment. I did mention my dip in mood in the weeks prior to seeing her, but she didn’t have much to say. She increased the Lamotrigine again by the minute amount of 25mg, so I’m now up to 125mg b.d. She asked me about the hand over to the NHS. She seems ready to hand me over and doesn’t seem to want me to continue seeing her once I’m in the hands of the NHS. She thinks it will complicate things, which it would, but I trust her a lot more than I trust the NHS and I appreciate the constant input. I’m worried about the frequency I will be seeing the NHS psychiatrist. Talking about this with my social worker today, she said that if people are “stable” they will only see the psychiatrist every 6 months, even if that stability isn’t a particularly nice state to be stable in. She said I may see them a little more often at first, but even then it may only be every 3 months or so. This terrifies me. At the moment I always have that “if I can get through the next fortnight until I see Dr G, things may be okay”. This can keep me going. Knowing I’m on my own for months may be enough to make me give up again. I know I can ask for a rapid access appointment if things get scary, bad, but I’m not sure that’s enough and I can’t be asking for one every month or so!

On Tuesday night I learnt the bad side of knowing lots of people with mental health issues. One of my friends who I met in The Priory texted me to thank me for being her friend and to apologise for the fact she was going to kill herself that evening. I didn’t know what to do as I felt powerless to intervene and hypocritical for wanting to do so. She had been a long-stay patient in hospital and I believe was on overnight leave at the time. In the end I contacted the hospital she had been at and told them what she’d said. They wouldn’t discuss it with me due to patient confidentiality or even acknowledge what I had said, but I hope it alerted them and was of some help. They told me to call the police instead as they would have the power to intervene, but I didn’t want to do that. She tried to call me a couple of times in the evening but I missed the calls and when I called her back she didn’t pick up. I was worried but I did what I could. I was relieved when she later texted to say she had been picked up by the police, although worried for her. The hospital she had been in have chucked her out, presumably for breaking the rules of her overnight leave. I’m shocked and appalled by this decision as she’s at her most vulnerable at the moment. The people who are meant to be caring for her have dumped her when she needs them most and she is now alone and extremely ill. Last I heard she was staying with some friends and I just hope they can keep her safe.

This whole thing was triggering for me. I wanted to help her and intervene with her decision, yet I myself wanted to do exactly what she was doing. I was jealous of her at the same time as worried for her. I was angry at myself for being so hypocritical. I knew that if I was in her position I’d have been frustrated if she had intervened, but then I still wanted to do something. I couldn’t just stand by and let a friend die. I was comforted by the fact that she had contacted me. It suggested to me that she wanted someone to do something. She’d have gone alone and quietly if she was completely determined to succeed.

Wednesday started with a trip to Dr N so he could steal my blood for the mood disorder research. He struggled to get anything out of me. Spent ages trying to find veins in my arms and used my wrists in the end. The first attempt failed and has left me with terrible bruising and some wrist pain. The second attempt was eventually successful, but painful as he pushed the needle around in my wrist. We got there though in the end.

After this it was a trip to my office. My work laptop was due to be upgraded so I had to go drop it in to the IT department. It was weird to be in my old work environment. It made me realise that I really missed it. I wish I could just go back and do my job.

I had Creative Remedies in the afternoon. It was visual arts this time, which boils down to painting. I was disappointed by the class as it is restrictive. We had to start with a “colour wheel”, which made me feel I was in primary school. I know very well which colours mix together and what primary and secondary colours are. For our first project we have to choose images from a selection of Japanese, Egyptian and Art-Deco pictures and use these as inspiration. It feels very much like art at school, which is frustrating as I’d rather paint whatever I liked. I was impressed with the materials on offer though. We get a portfolio folder and sketchbook, access to good quality acrylics, watercolours and gouache paints and canvasses to work on. It’s all free so I can’t really complain. The teacher does seem to be experienced and the outreach workers are the same as on Monday’s session, so we should be able to develop a good relationship with them. I’ve been getting on well with one of them in particular already. It is basically just an art class though and not art therapy at all and although it gets me out of the house and doing something it doesn’t seem therapeutic. I miss the emotional freedom of art therapy at The Priory and the therapists there.

Wednesday evening saw us heading over to Snowdonia for a few days camping. My parents and grandparents had rented a cottage over there for a week, so we joined them for a couple of days. It was nice to get away for a few days, but I was feeling a bit flat a lot of the time. A good campsite near Beddgelert, we enjoyed nice food at The Goat Hotel on Wednesday evening.

The highlight of Thursday was a trip to Harlech castle, but a further reminder of my illness. Disabled admission was one such reminder. A bonus in that it was free, but even still I feel weird asking for it. I find it hard to think of myself as disabled. The second reminder came from climbing the towers. I felt uncomfortable at those heights. I am not scared of heights in any way, but I wanted to jump. If my parents and partner weren’t with me it would have been a huge temptation. I don’t think I could do that in front of them though. The image of my fall would haunt them for too long. Aside from this though it was good. I’ve never been such a big fan of ruined castles, but the views were fantastic.

Friday brought beautiful weather and a trip to the beach. We struggled to find one where our dog was welcome, but eventually stumbled across a beautiful little cove, with golden sands and shallow water. The beach was almost deserted with just one other couple there most of the time. We went for a swim, which was of course cold, but good. It was lovely to see our puppy swimming properly for the first time. I felt like a proud parent. There were also lots of little silver fish swimming around, which was unusual but made me a little squeamish.

We came home on Saturday, amidst drizzle and murkiness. A real downer after the lovely day on Friday. Our tent was soggy and I hate packing at the best of times, so I felt pretty awful. I’ve just felt pretty low all weekend and have had little motivation to do anything. I just want to hibernate really.

The highlight of today was another trip to Creative Remedies. I have enjoyed it and I think I will continue to, but I am still unsure of the therapeutic benefit. I wonder whether the vast amount of money that is being spent on this should be put to better use elsewhere, especially in reducing the waiting lists for other therapy.

My social worker came over today to check up on me before we both go and see the NHS psychiatrist tomorrow. She had some paper work to read and sign – mainly my risk assessment and enhanced CPA. It was weird to read a catalogued list of risks and declarations of my suicidal thoughts. She asked me what I wanted from the appointment tomorrow and tried to set some expectations. It seems that we will go over history and recent mood. It is apparently unlikely that the psychiatrist will change my medication on the first meeting and it is likely that I won’t see them again for a while. I don’t see the point in just going over my history and not actually doing anything. He can find the history in my notes and I’d rather use this appointment to make some changes that may help me to recover. We will see though. Wish me luck. I really fear I am going to need it.

Creative Remedies…

So I started at Creative Remedies today in the performing arts group. There was an interesting mix of people and an awful lot of staff. It was the first week after the summer break and there was a new tutor and some new staff so no one seemed to know what was going on at first. We started with singing, which I enjoyed. I’ve sung a lot in the past so felt at home doing the breathing exercises and warm up. This was followed by some movement and yoga stretching, which was far more energetic that I’d expected. I was falling out of my top, so know to wear something with a little more covering next time! Overall the session was okay, but I’m not sure how helpful it is going to be. It kept me distracted for a couple of hours and got me out I guess.

Friday and Saturday were days of cooking. We made some nice platters to take along to the wedding. Pink Swirly Meringues and Mars Bar Cakes on one, Goats Cheese and Red Onion Rolls and Pizza Fingers on another. I also made gingerbread biscuits and my bloke made coleslaw and potato salad with his own mayo. The meringues and mars bar cakes were especially popular. The reception was nice and relaxed. It was lovely to see the brides and there was an impressive buffet. We left fairly early though as we didn’t know many people and we were flagging a little.

Yesterday, my bloke’s mum, sister and boyfriend came up. It was the sister-in-law-to-be’s birthday on Saturday so I made a cake and we had dinner. I always find visits from the in-laws stressful and this was no exception. I was ready to hide by time they left and we had an early night.

Tomorrow I see Dr G. I’m glad. It’s been a while since I’ve seen her and I need input. Things have not been good since I last saw her and I hope she will have some suggestions. We will see anyway.

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.

Short Pause…

It’s been 10 days since I last posted. Each time I keep thinking I should start writing more often again, but it doesn’t seem to happen. The gaps seem to get larger, not smaller.

I often think of things I want to write about, but I don’t seem to translate those thoughts into posts. I wanted to write about the NHS when the #welovetheNHS campaign was in full swing, but now I can’t really remember what I wanted to say and the moment has passed.

The last week or so has been up and down. A phrase I say so often.

I went to my parents for a few days last weekend. On Monday my sister, the dog and I trecked over to Porthcawl for the day. It was lovely weather and we enjoyed a splash in the sea, some fish and chips and icecream. Not a bad day really.

Tuesday involved bringing the dog home on the train. It was stressful, but we managed to get back safely. She slept a lot of the way taking up most of the aisle.

I saw Dr G on Wednesday. She increased the Lamotrigine again. I’m now on 125mg Mane, 100mg Nocte. Again it was an increase I expected. She is increasing the Lamotrigine by 25mg every 2 weeks. I wonder if it’s worth seeing her each time or if I’d be better off asking her to give my GP the instructions to increase it, thus saving myself some money. Seeing her every 1-2 weeks is not cheap.

I can’t remember what else we talked about. I remember her telling me she still thought it was too early for me to go back to work. Disappointment and relief. Disappointment that I am not well enough to go back. Relief that I don’t have to make the decision yet and that I am not being forced to go back too soon.

My social worker is still useless. I saw her on Thursday after forgetting I was meant to see her on Tuesday. She turned up at my house and I was at my parents 140 miles away. I guess that makes me useless too.

Anyway, we talked for a little while. She asked me if I’m interested in the creative remedies therapy group and the “positive thoughts” group. She’d forgotten to bring the information again so I’m not entirely sure what I’m letting myself in for. I agreed to both though so we shall see what happens. I’m pretty skeptical about the positive thoughts one. She said it’s simplified CBT, which rings alarm bells, especially as I’ve done non-simplified CBT in the past. I have visions of us sitting in group having to repeat affirmations. The groups are meant to start in September.

J came up with excuses about her failure to complete the referrals so far saying that the problem is she’s useless at doing paper work. More alarm bells ringing when she said that. I’m sure form-filling must be a huge part of her job so I wonder why she’s doing it if she can’t be bothered. I hope she does the referrals but I’m not holding my breath.

She also told me she’ll be with me at my psychiatrist’s appointment in September. I don’t want her to be, but I guess I have little choice. I’d rather I was on my own. I generally find I’m more comfortable with the psychiatrists and I have no trust in her at all, so I think I will find it hard to be open.

She didn’t think my appointment was with Dr B because the time doesn’t correspond to one of her clinics. I’m not surprised at that, but still a little disappointed. She did say who she thinks it will be but I can’t remember his name. Apparently he’s quite new and she doesn’t know what he’s like, which is a little worrying, but I get the impression that is quite normal with the NHS.

The rest of the time lately has been littered with arguments and random drops in mood. Friday evening was difficult. After a long argument with my partner I became hysterical and couldn’t stop crying. I find myself wanting us to break up and these episodes only make that wish stronger. I don’t know how we can carry on like this. The arguments are frequent and pointless. They just hurt us both and make life so difficult. I want to isolate myself from it all. It fuels my desire to not be here.

Earlier today I read this post on mentalnurse.org.uk. It talks of the anger at being saved from suicide. I still feel that anger and unlike Torah, I am not pleased to not be dead. I still wish that I had not been saved. I remember the disappointment of waking up and knowing I’d failed. I remember people asking me if I was glad to be alive and thinking they were insane. I still don’t understand how they could ask that. I didn’t make the decision lightly. I knew I didn’t want to be here anymore and failing to complete my plan did not change that decision. It’s still not changed that decision. I still want to be dead.

That’s not to say my suicidal ideation has not lessened. A few months ago I was constantly actively suicidal. Always thinking of plans, always looking for the next opportunity, always battling the thoughts. Now my thoughts come and go, but they are still a frequent annoyance. I have moments when the thoughts lessen, but I am never glad to be alive. Most of the time I’m still wishing I was dead.

I do not see the point in life, nor the appeal. I don’t understand anyone who is glad to be alive. I see life as a long hard battle with no positive outcome at the end. I don’t see why anyone would put themselves through that for any longer than is really necessary.

I don’t know what will come of these thoughts. I have managed to resist over the past 6 months, but I do not know how long I can keep this up. I have been kept safe for most of that time, unable to act when I have most wanted to. That supervision will of course continue while I still harbour the desire to be dead. I wish it wouldn’t but know I can’t stop them. There is anger there of course. An annoyance that I am not in control of my own life. I understand their reasons though and I know I have no choice but to comply. I just wonder how long for.

I wish that things will change. I wish I could find a zest for life. I wish that I could see a point to it all. I wish that there was enough hope to keep me going.

I find myself wanting to force the change, but I can only see one option for that and I know it’s not the one that everyone else desires. I worry that I will take that option regardless. Suicide is always the fall back position. My trapdoor to escape all of this.

Disappearing Posts…

Some of you may have noticed that my posts disappeared yesterday for a while. My bloke and I had an argument and in order to hurt me, he signed into here and deleted my blog. Thankfully he had the nouse to back it up first, but I was still upset and felt violated.

I saw Dr N this morning. As always it was good to see him. He always gives me time and is understanding. We talked about various things, including the arguing and anger, work and the CMHT. I got my script and I now have my melatonin so here’s hoping I get a decent nights sleep soon.

He is still keen for me to go back to work, but I just don’t know how I can. I am still as low as I was last May when I was signed off initially. I can’t handle even the smallest thing and I just snap and lash out. I’m worried the stress would tip me over the edge and I’d end up hurting someone or killing myself. Last night I dreamt I was at work and I hit my old boss. It was horrible. I hate that vision of myself and worse, I know it is close to reality. I suspect I wouldn’t last a week, even on part-time hours. I really don’t want to go back before I’m ready, yet I don’t know if I will ever know when I’m ready. The longer I leave it, the harder it is getting.

I am getting frustrated at being left behind and the way this illness has ruined my career. If I’d been well I’d be promoted this September. I am being left behind by my colleagues that started with me. Even worse, people that started after me and who were not as good at their job as me are being promoted ahead of me. I feel like a failure.

I fear returning to work and people’s thoughts about me. I fear the questions about my absence. I fear people’s confusion over why I’ve been in the company over 2 years, but have not been promoted to the next level. I fear people will think I’m useless because of that.

So far I’ve had some fairly negative reactions to my time off from work due to illness and that both upsets and worries me. I feel that I’ve lost people’s respect. What if I can’t find a new project because every manager is too worried about my sickness record? What if they treat me differently?

There is part of me though that is dying to go back. I want to get out of the house and start my life again. I want the freedom and independance that work will give me. I want the social life that work gave me. I want the daily routine. I want a reason to carry on. I’m fed up of this illness ruining my life. I want to go back and be better than ever.

I know that going back would not be the same. I loved my old job, but this wouldn’t be my old job. I will be working on a new project with new people. At first I will not even be on a project, which will be strange and difficult. I don’t want to return to a watered down version. A phased return would be painful for me, even though I know it is for the best. I want an exciting project and want to be in the thick of things. I don’t want to do pointless activities for the sake of it. I don’t want to be stuck in the Manchester office all the time. I don’t want to be learning how to do my job again. I am worried I just won’t be as good at it as I used to be. I am not as sharp and find everything so difficult.

When I went back to my old role for a few days last August, I found it unbearable not being able to do my old job. I found it unbearable knowing that someone else was now in control. I won’t be going back to the same project this time, so maybe that won’t be a problem, but then I’m scared about starting over again with something new.

There are also the small issues of the finance side of things. If I go back my permanent health insurance would be stopped. Initially it is complicated as I won’t be working full hours, but I’d be on some form of pro-rata pay. Also I’m currently applying for ESA. If I tried to go back to work and found I couldn’t manage it, I wouldn’t be eligible to claim again for another 28 weeks. It’s not exactly an incentive to try and go back before you are ready.

I guess we shall see what happens. I am signed off for another 6 weeks or so anyway so won’t be deciding before then. Dr G said yesterday she doesn’t think we can consider it until at least the end of September and I’m not sure I’ll be ready then. I will also have to attend an Occupational Health appointment before they let me back. OH of course might decide that I’m not well enough anyway.

Urgh…

I feel awful. I don’t know why, but my mood has dropped like a stone.

I saw Dr G this afternoon. I didn’t really know what to say to her. I just said that my week had been “more of the same”, but she tried to probe further and wanted me to tell her how I actually felt. For some reason I didn’t feel able to. I was just vague and didn’t know how to explain things. She asked me about my suicidality. All the way there I’d been thinking about how I could still do it at any point if the opportunity presented itself. Suicide was on my mind. Yet when asked, I played things down. I said that the thoughts were still there, but that some of the time they aren’t as strong as they have been. I said that, when only a few minutes before seeing her they were as loud as ever.

I think most people would be surprised at my suicidality, even now. I suspect that most people think I wouldn’t do it now as I’ve managed to resist for so long. I suspect that most people think things are improving and I am on the way to recovery. The reality is though I am kept safe and if I wasn’t, I’d be long gone.

In some ways maybe I am on the way to recovery. Lamotrigine has been the first medication to not make me worse, and maybe with time it will make things better. My concentration has improved a little and I’ve started to read again, something I wondered if I’d ever do again. I am usually not grappling with the most extremes of my mood any more, although I still have my moments. There are enough encouraging signs to give Dr G and others some hope.

The problem is it is not enough and I still feel hopeless. In many ways I’m still as ill as ever. I could give up on these signs of recovery at any point. I could and probably would end it all given the chance. It may not work and then I’d be back to where I was last February, but I’m certainly willing to take that risk. I don’t care that I may get better. At the moment things aren’t good enough to want to survive.

I am still not sleeping – rarely getting more than a few hours. Dr G has decided that it’s worth trying Melatonin (Circadin). I need to see Dr N to get the script. I hope it helps. Anything is worth a try.

We also talked about how we are going to manage things until I see the NHS. I will continue to see Dr G for now, but I will probably have to be passed over following my appointment with Dr B (or her team) in September (if I make it that far :S). Something I am not overly keen on.

I wish all this could be over. *sigh*