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Posts Tagged ‘GP

Other things…

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Aside from the therapy assessment, there is a whole host of other things that I want to write about. I don’t really know where to start, but I’m going to have a go, because I think it may help me to get some of these thoughts down at last.

I need to start giving myself some more time. I’ve taken a twitter hiatus lately to try and free up some time, but it doesn’t seem to have made any difference. If I was spending an hour a day or whatever (probably more like 3 if I’m honest!) on twitter, I want to know why I don’t have an extra hour spare each day?

I am not sure if I prefer to have twitter in my life or not. Leaving twitter should at least reduce the number of arguments with the bloke – twitter is quite often the trigger for them, but whether or not it really has remains to be seen. He will probably just find something else to criticise. If he gets to win the argument on twitter, he will go back to trying to get me to completely stop blogging as well.

It should in theory give me more time to do other things, but I don’t think it has made much difference. It is very much true that whatever you have to do, will always expand itself to fill however much time you have to do it in. It is the same in that I haven’t worked for 2 years, yet I seem to have filled my time with other things. I don’t quite know how I would squeeze work back into my life, although I’d work out how to somehow I guess.

I do feel like I’ve lost something without twitter. It gave me two things. A feed of interesting information about the world in general and a more personal support group from the madosphere. I am missing both of these for different reasons.

The lack of general stuff leaves me feeling just a little bit behind. Twitter is great in that it can keep you up to date with things, real time. I have to go to more effort to find out things and to keep on top of the latest goings on. If a band that I follow releases tour dates, they will usually tweet about it. Now I have to wait until I spot them on some listings or on their website. If someone posts a news story about something I’m interested in, chances are I’d see a link to it on twitter pretty quickly. I am having to pay more attention on BBC News to spot things of interest. I guess I can do without this info, but when you are used to having it fed to you all the time, it is weird to go back to having to look for it. Twitter is certainly convenient. You can pretty much find anything on there if you wanted.

I am missing the support group side of things too. I feel that by stepping away I am neglecting people and I really don’t want to do that. I hope that people don’t take my hiatus to mean I am not interested in them or don’t care about them any more. It is not about that at all. I feel like I am letting people down by not being there all the time. Of course I miss receiving the support of my twitter friends too. It is nice to know that there is nearly always someone out there to talk to if you feel like it. It makes the world a little less lonely.

I do miss it, but a lot less than I thought I would to be honest. I can live without it, which maybe surprises me a little. It is convenient though

I don’t know if I will go back, stay away longer or perhaps just change how I use it. Maybe I will go private for a bit? I don’t know. If you are waiting for me to go back though, don’t hold your breath.

I didn’t start out with this post to write about my twitter hiatus, but there we go. It was something I wanted to explain on my twitter feed, but hardly possible with 140 characters. At least by saying it here, I can feel like I haven’t gone without explaining myself.

_______

So what else is there?

Physically, I am struggling. I have been suffering with persistent “tummy trouble” and irritable bowel issues lately. It has been there for months now. I was too embarrassed to say much at first (no one really wants to share their toilet habits do they?) and I thought it would improve, but it just got worse and worse and has been making things pretty rough. Constipation, diarrhoea, both, often with urgency, occasional vomiting, frequent nausea, awful tummy cramps that rival the worst period pain, chest tightness/pain, bloating and lack of appetite… None of which are particularly fun and when it all happens at once it makes you feel pretty awful.

Dr N and I are both pretty sure it is the Reboxetine to blame. I saw the locum last week as Dr N has been on holiday for a few weeks. He got me to have a collection of blood tests to see if there was anything else to explain things, but they didn’t bring anything up. I phoned up for the results on Tuesday and the receptionist reeled off a long list of the ones that were clear, but said I should come in to see the doctor about my liver results. I had a suspicion that this would happen, as it has done in the past. Apparently, one of my liver hormone levels is slightly higher than it should be, but it has been for some time and it is actually a little better than it was earlier this year. The other doctor probably wasn’t aware of this, so wanted me to see a doctor, but Dr N wasn’t worried about it. He did tell me that I should really keep any drinking to a minimum though, as my liver will struggle with any heavy drinking. I don’t tend to drink very often or very much anyway, so this isn’t so much of a worry, but it is a little concerning if I am going to be taking this medication in the long-term. Dr N thinks it will go back to normal if/when I stop taking the Reboxetine and joked that I can hit the booze then, whilst chastising himself for being a bad doctor for saying so. I don’t relish the thought that my liver results make me look like an alcoholic though. It is probably worth trying to be careful for the time being, I guess.

When I last saw Dr N about 6 weeks ago or something, he started me on alverine citrate as an antispasmodic, but so far it hasn’t helped all that much. I am having a few less of the sudden desperate trips to the loo, but still struggling with the pain and diarrhoea/constipation a lot. Today, he’s decided to double the dose, so fingers crossed it will have some impact. I am not sure I can carry on with these kind of problems for much longer. How anyone survives a life of IBS, I have no idea. Hopefully for me this will be temporary and I guess if it is caused by the Reboxetine there is always the option of stopping the meds, but I am not sure I like that idea.

The only good thing about all of this is that I have lost quite a bit of weight. Although that possibly isn’t such a good sign for my health. I put on a stupid amount of weight at the start of this year. Considering I wasn’t eating that much because the food was disgusting, I think I put on about a stone whilst I was in hospital in January and that continued when I came out. I don’t actually know heavy I got, because I stopped getting on the scales when it went over a certain number. I have pretty much always been overweight, although it probably bothers me a lot less than it should do considering my weight is not good for my health. However, over the last 6 months my appetite has disappeared and the weight has been falling off, without much effort at all. I have been more active over the summer, especially when I was travelling, but I think the loss of appetite has made the biggest difference. I often feel too ill to eat and most of the time I could quite easily go all day without eating anything. I am fed, because the bloke does virtually all of the cooking, but if he wasn’t around I’d live on the occasional bit of toast or the odd crumpet. I have lost all of what I put on earlier this year and more. My weight has yo-yoed a lot, but I am now somewhere near the lowest weight I have been since I was about 17. Admittedly, I am still many stone overweight, but I have lost over two stone and getting on for three. My clothes which had all got too small are now all too big. I am fed up of having nothing which fits properly, but I don’t really want to spend too much on new clothes if my weight is still changing. I have cleared a lot of stuff out, but I am reluctant to get rid of stuff in case I put the weight back on. We shall see.

Unfortunately, the way I am feeling physically hasn’t been helping my mood at all. In general, my mood has been dropping off over the last couple months. I felt a lot better during the earlier half of the summer than I did in the latter half and I felt a lot better 8 weeks ago than I do at the moment. At first, there were just a few warning signs and I did my best to ignore them. Whenever I noticed them and started to worry, I tried to stop myself because I didn’t want it to be a self-fulfilling prophesy. Worry that I was getting worse, so I got worse. Unfortunately, that strategy doesn’t seem to have helped much, as my mood seems to have dropped regardless.

I haven’t wanted to tell anyone that I am not feeling so good. I am disappointed that my recovery has stalled and almost feel ashamed. I wanted this time to be the time where I get well and stay well. Instead it’s a return to the old “one step forward, two steps back”. I am worried that if I am getting depressed again, then maybe I am to blame for it all. I wish I had made more of the time when I was well, because I don’t think I really appreciated how much better and easier things were.

I hadn’t wanted to write about it here, because I was worried about what the bloke would think, but he had noticed the drop in my mood, despite my best effort to carry on and pretend that nothing had changed. I didn’t and still don’t want to worry him. I do not want to go back to how things were when I was really ill.

I wasn’t sure I was going to tell Dr N today, but he knows me too well now and I think he could tell before I even said anything. I was there about the tummy trouble, but he asked me about my mood and I couldn’t tell him that all was fine. He seemed sad and a little concerned, but he was reassuring too. I think I feel a little better now that I am not hiding it so much.

Thankfully, although things have dropped off, they are still better than they were a year ago or back in January. Most of the time they are still a lot, lot better, but I’ve been having some bad days. Last Wednesday was really rough. I felt truly awful all day. Cried on and off for most of it and at one point instead of sorting out the huge mountain of washing I’d put on the bed, I just lay down next to it and crawled under the covers for a while so I didn’t have to face it. I pretty much cried myself to sleep, but then woke up in a panic that I had less time to get everything done. We had guests around for dinner that evening and the house was a mess, so there was plenty to do.

Unlike usually when I have been depressed, I am not especially suicidal. The thoughts come and go, but it is not like before. I was chronically and painfully suicidal for so long, I thought it would never go away, but it did. Over the summer, I stopped wanting to kill myself. I had started to see the point in life and recognised that I could have a future where I didn’t feel at mercy to my moods or awful all the time. Thankfully, despite the fact I have felt pretty low at times, the suicidal ideation hasn’t come back with such ferocity. I think I have retained the hope that I can be well again. I had lost that before, but Reboxetine has given me that back. I thought I was always going to feel so depressed that I didn’t see any point in life. There are times when I feel like that again. When I think about relapse, I get so frustrated that again I am going backwards. This makes me feel pretty hopeless and I wonder what all the point is. I sometimes just want to throw in the towel and give up, but I am resisting. Occasionally, I do want to die. A lot of the time I don’t really care if I live. Even when I have been well, that hasn’t really completely gone away, but I am managing. The thoughts pass and for now I can handle them. Hopefully, it will stay that way.

I told Dr N today that I do think there is something in the seasons. He has asked me in the spring when I started to feel better if I thought there was and I said I didn’t know. When the Reboxetine showed the first signs of helping earlier this year, it was at the same time as the weather improved, so we weren’t sure if it was one or the other or both. Often my worst times have actually been in Spring, when most people are starting to feel better. However, I think about it now and I think the seasons do have some form of effect. My mood has definitely dropped in September/October for the last three years. Last summer I was better than I had been during the rest of the year (although still much, much worse than I was this year), but things went downhill from September. The year before was generally awful from June onwards, but it wasn’t until September that things completely fell apart and I first ended up in The Priory in October ’08. I used to struggle in October whilst I was at school too, but I always put that down to an increased workload and the fact it was usually a time for deadlines and the ramping up of rehearsals for Christmas concerts and the like. So maybe there is something in it? I don’t know. I just hope that January/February 2011 isn’t as bad as 2009 or 2010.

Anyway, I see Dr M on Monday. Dr N told me to mention the seasonal thing. He said it is worth knowing and perhaps we should be aware of the rough cycle of my moods as it may help us pre-empt things. I have tried to be aware in the past, but it is hard when you often forget how you have felt before, even when you try and keep track.

He said that she may choose to raise the Reboxetine, but he is worried about the side effects. I had of course thought of this too. I considered doing it myself, but thought I had better see what she said first. I am worried about the side effects too. Things are so bad on that front, that it may not be wise. It’s a bit of a chicken and egg problem, because the side effects are making my mood worse, but to counteract that drop in mood, I will probably have to make the side effects worse. I don’t know what is worst. It’s a hard balance to strike. I don’t think I can tolerate the side effects getting any worse unfortunately. They are trying my patience enough as they are. I had hoped that when I was settled on these meds, the side effects would subside and although some of them have done, the tummy troubles just seem to get worse.

Anyway. I have written enough for now. This is a long post and I must try and get to bed. I have been waiting for the bloke to come home from playing computer games with friends, but he is not back yet.

Distressing Diagnosis…

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I am still finding the whole story of my diagnosis pretty distressing. Every time I think about it I feel like shit. More often than not I start crying. I am so ashamed, offended, frustrated, insulted, embarassed, disgusted, shocked; all of those and more. By diagnosing me with NPD, Dr M has labelled me as a horrible person, someone that no one would want to know. It hurts. I can’t stop hating myself for it.

I went and saw my GP, Dr N last week. I had written some notes for him outlining my thoughts on the diagnonsense issue, but when I went to pass him the notes, he said Dr M had written to him. For some reason I took that to mean she had actually told him my diagnosis and I withdrew my notes, but I realised later that she probably hadn’t given the detail. I wish I’d got him to read my letter anyway, but it’s a little late for that. Initially he tried to defend the suggestion that I had a personality disorder, mentioning that he had considered it in his differential dx when he first treated me back in 2008. He said that I shouldn’t worry about the diagnosis, diagnoses change and that it isn’t a personal attack. It was at this point that I managed to tell him, in between my tears, that it wasn’t the PD element I found particularly distressing but the narcissistic bit. I don’t think he knew which PD I had been diagnosed with until then. There was a look of surprise on his face and his attitude shifted. He was more receptive to my suggestions that the diagnosis was inaccurate, although he did defend Dr M. He suggested that she must have had reasoning for the diagnosis and that generally he trusted her, but he also agreed that she hadn’t known me very long. I said that I was scared of objecting and he finished my sentence for me, saying “because you’re afraid of it coming across as narcissistic”. I felt a little comforted that he understood this as it gave me hope that others would too. I do feel like I am trapped by this diagnosis, unable to complain for risk of compounding the issue. In the end, Dr N suggested that I sent Dr M a letter, ahead of my appointment this Monday as he didn’t really know what else to suggest. I agreed to do this and we sorted out the medication thing and that was it really.

I was generally a mess during the appointment. I couldn’t stop crying, which I think surprised Dr N a little. Despite the fact that I’ve seen him many times when I’ve been really low, anxious and generally at my worst, I very rarely cry. I can only actually remember one other occasion.

Usually I leave his appointments feeling a little better, but I went into this one with hope and left feeling pretty dejected. I do think he understood and was concerned, but I didn’t feel supported as such. I had hoped he would be able to help me in some way, although how, I do not know. I had hoped he would tell me he didn’t agree with the diagnosis, but I am not sure he would admit that, even if he wanted to. I guess that it’s probably not professional or wise to criticise a consultant’s opinion. I found myself losing all hope that this was something I could fight. I feel like I am fighting it alone and don’t know what to do. I had wanted to know there was someone on my side and I was disappointed that he chose to stay on the fence. I pretty much felt like giving up and resigned myself to the fact I am a horrible narcissistic person.

I got home and wrote the letter though. I found it hard to find the words and to keep it professional. I needed to stick to the facts and didn’t want it to become emotional. I wanted to be careful and not write anything that could be used against me, but even still I know that it doesn’t matter what I say, it could always be twisted into something else. I emailed it off to Dr M’s secretary and tried to forget about it, but no matter how hard I would try, it was haunting me. I felt physically sick with anxiety all weekend. I couldn’t face the thought of seeing Dr M again.

On Monday I saw Dr M. I didn’t get much sleep on Sunday, which is unsurprising really. I never get much sleep the night before appointments. My bloke came with me. In many ways I was uncomfortable with this, but I needed someone there. I was too scared to go alone.

She wouldn’t start the appointment with my email. She wanted to ask what I’d been doing and how my mood was and the usual. I found this hard when all I wanted was to get the diagnosis thing over and done with. I guess she did this to maintain control over the appointment.

We conceded that there had been a tiny bit of improvement in my mood. I have had the odd better day in the past couple of weeks, which I’d not had for some time before, but then the bad days are just as bad as ever. At times they are actually worse because anxiety has joined the depression. I have never really had a major anxiety problem before, but at the moment I am completely on edge. There is a churning anxiety there all the time and it flares up, leaving me feeling sick, shaky and tense. I think about things and suddenly my heart skips a beat, my chest gets tight and I feel this wave of unease washing over me. The diagnosis issue is the biggest trigger for this, but not the only one it seems. Sometimes it even happens for no conscious reason and this unnerves me even more.

We eventually got onto my letter and diagnosis. This part of the appointment is actually a bit of a blur now. I was too anxious and too upset to really take things in and I don’t actually think much was said. I was crying within moments of approaching the topic and at times the sobbing got the better of me. I couldn’t think. I couldn’t speak.

She said she was expecting my objections. It felt like she was saying “Look! I know what you’re like. Of course you’re going to write to me and object to the diagnosis. It just shows you’re narcissistic”. She may has well have. That’s how it felt.

I remember her trying to justify the diagnosis, saying that she hadn’t made it just on a few isolated examples, but that Dr S agreed that there was plenty of evidence. I tried to argue that she has barely had chance to know me and that considering I’ve not been well it would be hard to get a representative idea of my personality, but I don’t think it helped.

She pretty much counteracted everything I could say and I was losing the will to debate. It was a little like trying to swim upstream, with big sticks floating down the river towards you. You can see them coming and you know they are going to hurt when they hit you, but you can’t do anything to stop it. In the end, you just keep floating down river.

I tried to get my bloke to back me up and say it was ridiculous, but although he conceded he didn’t think I met the diagnostic criteria, he didn’t exactly add much weight to my argument. I almost felt that his near-silence only served to strengthen her opinion. I just felt helpless without anyone on my side.

At one point I asked her how she could diagnose any personality disorder so quickly and I suggested that she shouldn’t give the diagnosis until she was absolutely sure. She replied with “ohhh, I’m sure!”, said in that annoying way that implies you are ridiculous for even suggesting otherwise. This pretty much finished me off. The way she said it has echoed in my brain since and it doesn’t matter what happens to the diagnosis in the future, I’m always going to have those words telling me I’m a narcissistic cow running in the background.

She did however keep saying that she doesn’t think diagnoses are that important. I found this frustrating, because if that was the case I don’t see why she gave a diagnosis in the first place. There was no need to write it in my notes in big letters if it doesn’t matter. There was a lot of  discussion about how the diagnosis does or doesn’t matter and how it is or isn’t helpful, but I am not sure I was even following at the time.

I was asked what diagnosis I thought was accurate. What personality traits I felt were a problem. I didn’t really know what to say. At the time I could think of a few obvious ones, but I wasn’t thinking clearly. It’s something I have considered before, yet when called upon I went blank. I was also worried about saying anything too incriminating.

She asked if the diagnosis was really a problem or if it wasn’t helping. I agreed that it was making things worse, because I am so frustrated and upset by it. She said that she didn’t want to do anything that will make things worse and I know she does genuinely mean that. She told me that if it would make me feel better she wouldn’t specify the NPD. So now my diagnosis is going to say something like “moderate depressive episode” and “personality under investigation”.

On paper, I guess things are a little better. The horrible word is gone. I am back to a potential PD, but a non-committal one.  The problem is, it doesn’t change the way I feel or the way Dr M feels about me. The damage is done. I’ve been labelled as narcissistic and I am hurt and upset by it. I am still thinking about it far too much. I hate myself for it. I find myself thinking about what I’ve said and done and trying to work out if I’ve been narcissistic and if I have been in any way, then I beat myself up over it. I obsess over it and just use it as more and more evidence of why I am a crap, evil person and that I would be better off not being here.

I could go on. There is more I want to say, but I am pushed for time. Sorry all for cutting an entry short, yet again. Just too much going on, both in life and my head.

Hope everyone is well. xx

Edit: I tidied this entry up a bit. It was written when I was pushed for time and I didn’t exactly express myself too well in places. The strain of things is taking its toll in many ways.

Written by intothesystem

Wednesday, 10th March 2010 at 9:49 pm

Bombshell…

with 16 comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Recovery, Scoring and ESA…

with 8 comments

It’s been a strange week really. I seem to have spent the week being confronted with the fact I’m still a lot more ill than I thought I was.

On Wednesday I had an appointment with Dr B. He’s another GP at my local practice and as Dr N is on holiday for two weeks I had to make do with him. He’s okay, but a little brisk. Every time I’ve seen him he’s made me do a PHQ9 form to assess my levels of depression. It’s similar to a BDI I guess, but with fewer questions and less detail. My score was in the twenties (out of 27), putting me in the severely depressed category. I knew I was still depressed but I’d kinda expected it to have moved into the moderately severe category by now. I do feel better than I did back in February. The depression is less absolute, but I can’t deny that I still think of death and suicide every day, I’m still not sleeping and I still feel pretty tired and down.

For curiosity’s sake I did a BDI as well. I ended up doing it twice as I find it so difficult to decide between answers. My pessimistic score (choosing the worse option if I couldn’t decide) was well over 50. My optimistic score (choosing the better option) was about 45. 30+ is classed as severe depression so it’s a pretty similar result to the PHQ9. It’s a vast improvement on the 60+ (out of 63!) I was scoring in February. I racked up one of the highest scores ever seen at The Priory back then, which is pretty scary really. The improvement is not enough though. How can this be recovery if I’m still in the severely ill category?

I don’t know if I am really severely depressed though, even if my scores say I am. I have been depressed for so much of my life I’m not sure if my results are skewed. I expect even when I’m what I’d describe as well, I’d still be scoring a mild depression score at least.

I was talking about this with a medic friend last night. We were talking about the GPs in the village and I mentioned I’d seen Dr B. She asked me what he was like and I basically said he was okay, but he asks me to do the PHQ9 whenever I see him. She said that GPs are obliged to demonstrate they are giving “adequate monitoring” to depression patients and the PHQ9 counts towards this. It’s interesting as I don’t remember ever doing one with Dr N. I guess he prefers to give adequate monitoring with actually asking me how I am, rather than getting me to select ticky boxes.

I mentioned my scores and how I wasn’t sure how accurate they were. She suggested that sometimes the scores can be a little skewed by insight and they often don’t reflect how well someone is functioning, which seems fair enough I guess. She said I’m clearly functioning a lot better than my scores suggest, which I think is true, but I guess that comes with years of practice in hiding things. I function in autopilot, hiding the thoughts, but the thoughts are still there.

To add further doubts to my idea of recovery I got a letter from the ESA decision maker yesterday. They are finally processing my application under the youth rules and the decision maker has sent the sheet explaining how much I will receive. Looking at it, I’m being paid the amount pertaining to the Support Group. I presume this means they have my medical result and not only have I passed, but I am deemed too unwell to even contemplate work and thus have been placed in the Support Group. This is a big surprise. I had worried so much that I wouldn’t even pass the medical, let alone be placed in the Support Group. I haven’t received the letter confirming my medical result yet, so I wouldn’t be surprised if this is wrong, but it shouldn’t be. I will be interested to see what score I actually received. Another set of points telling me how ill I am.

I don’t know how I feel about being in the Support Group though. In a way it is positive. It means I don’t need to do the pointless Pathways to Work interviews and I also get a little more money, which of course is good. It means there is no pressure to try and get back to work before I am ready. I will not be bullied by the DWP to do so.

At the same time though I can’t help but feel disappointed. I feel like I’ve been written off. I am too ill and disabled to even consider working. That’s something I can’t handle and really don’t want to admit. I want to get back to work and I want that to be something achievable in the near future. It makes me feel like this is all pointless. I want to be recovering and this makes me wonder if I really am. I had felt I was making progress, but that progress is clearly not enough. This is all just fuelling the “fuck it, this isn’t worth it” thoughts. I don’t want this.

I’m a little worried too and I almost feel guilty. I wonder whether this is the right decision. I kinda feel like I have cheated the system because I didn’t expect to pass the medical. I know how notorious these medicals are. I know that hardly anyone passes, let alone gets placed in the Support Group. I wonder why I have got through when so many others haven’t? Am I really that bad? I know I can be in denial and I guess in a way these doubts show that, but I am still unsure. It just feels a little wrong.

I wonder if this process is designed to make you feel guilty? There is such a stigma against incapacity benefits, that you feel awful to be claiming them, yet if you are entitled to, it would be stupid not to. There is so much attention paid to people that cheat the system that genuine claimants worry they will be tarred with the same brush. I had no intention of cheating the system and I didn’t do anything to do so. If anything I down played how bad things were. There was no exaggeration, yet I feel like I have cheated. Surely this is wrong? Surely I should just be glad that the right decision has been made? Yet the doctors at Atos have such a bad reputation I even question a positive decision.

Tiresome…

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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…

with 7 comments

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…

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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.