Posts Tagged ‘GP’
Other things…
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.
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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…
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.
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
Recovery, Scoring and ESA…
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.
Another Bad Night…
Last night was just another bad night of many recently. I couldn’t sleep, mainly because I felt physically awful, but also because there was a lot rolling around my mind. Little positive unfortunately.
Morning rolled around and I still felt terrible, so forcing myself out of bed really didn’t seem like a good idea. I just couldn’t face more therapy on top of the dizziness and stomach ache I was struggling with, so I decided not to head to The Priory today. Art Therapy this afternoon had been cancelled anyway as the therapist is away.
Afternoon arrived and I got up, but could only manage an hour or so before escaping back to bed. I had to get up eventually though mid-afternoon as there were things that needed doing and I had an appointment with my GP, Dr N.
The appointment was similar to usual. I wasn’t honest enough again, but I don’t know if I need to be anymore. They seem to realise that things are pretty bad. He asked me if I wanted to get better, and although I do, I confessed I sometimes find it hard. I just want everything to go away. He told me to stay safe. I wonder why they keep telling me that.
He gave me my scripts. 2 weeks this time, but he basically told me that 2 weeks of my new baby starting dose of Lamotrigine (25mg) is not enough to hurt a cat, let alone me, so told me not to bother. The silly thing is I’d already checked and knew that.
Tonight, I’ve been left alone whilst my partner is out for a few hours. I should feel the freedom and relish it, but I am just left disappointed that I feel so physically crap I can’t make the most of it. I am also bound by the dog and the fact my car is at the garage (even worse than not knowing where my keys are). I took the dog for a short walk, but didn’t feel very well doing it. My head was spinning and the strain of trying to get a 16 week old puppy to go where you want to was getting to me. I just wanted it to be over. It’s stupid that things like that left me not just wanting the walk to be over, but wanting everything to be over. That is the way things are at the moment.
Earlier this week, I had a plan for tonight. A plan I’ve not been able to realise. When asked if I was going to be safe on my own tonight I had always said yes. When asked if I had a plan and had set a date I had always said no. The truth was, I had a plan and today was the date.
All last night I was thinking about it. All last night I was thinking about whether or not it would work, whether there were any better options, whether or not I’d feel physically up to carrying it out, whether or not I’d be mentally up to it. I guess it is no wonder I didn’t sleep very well.
Today though has not gone to plan. I was missing some of the means and the physical strength to do it. I think it is hard to think about doing anything when you feel so physically crap that all you want to do is go to bed.
I am left disappointed and sad. I am left frustrated. I still wanted to do it tonight. It is too late now, but I find myself regretful. I should have done it. I should have just stuck to the plan. I feel weird. I didn’t see a future beyond today, so tomorrow will be strange. A day that I had not intended on seeing. I don’t know what to do with it.
A label…
Earlier today, I had my second opinion meeting and review with Dr P. I wasn’t given much notice. The ward doctor, Dr C, just said he will be over in a few minutes and fifteen minutes later I was sat in a room with him and Dr C answering questions. It was a bit like the nth degree. My memory is sketchy and I struggled a little, but I gave him an overview of my moods over the past few years. He was keen to find out if I’d had any ‘up’ periods and although I have, I don’t want to exaggerate any of them so didn’t really know what to say. I just tried to explain how I was at various points in time. He had a little bit of knowledge about my history before he started and seemed keen to get an overall picture of my mood cycles. He asked about my agitiation also. It was a different approach to Dr G, who was more keen to get an idea about how I felt and what I thought. They’re polar opposite doctors, but both good at what they do.
Anyway, Dr P eventually said that based on my lack of response to ECT and anti-depressants he believes I have bipolar II disorder and thinks that ADs are not going to be helpful. I hadn’t realised that my lack of response to ECT could be seen as a test for bipolar. If I had recurrent depressive disorder, I’d likely to have had some positive response to the ECT, but because I haven’t, it probably suggests that anti-depressants are not going to work for me. He talked about how some people with bipolar II do not respond to ADs or traditional treatments for depression such as ECT and that was why he was suggesting that diagnosis.
He wants to start me on an old school mood stabiliser, so is putting me on Depakote. I am a little scared as I’ve heard bad thinks about Depakote, but everyone responds differently to different drugs and anything has to be better than the current situation. He is keen to take me off anti-depressants altogether. I’m glad it’s not lithium anyway.
He asked me what I thought and said that he suspected it didn’t really come as much of a surprise. At the time, I said not. I told him I knew a reasonable amount about the condition as I had friends with it and I had in the past suspected that it fitted. Thinking about it since though, it has been a bit of a shock. I’ve been seeking a diagnosis for so long and not received one, so to finally have one is a bit of a shock. It’s an unpleasant surprise too because I know that it can be an awful condition to have and I’m not sure I really want it, even if it does fit. After all, the last year has not exactly been a barrel of fun.
Dr G doesn’t yet know the outcome of the meeting. She isn’t in work today, but she is coming in tomorrow to see another patient so Dr C has written her a letter telling her about the meeting. I may end up seeing her tomorrow to discuss. I’m a little scared about her response to all this as I’m not sure what to expect. I presume she was aware that this was a possibility, because she wouldn’t have got Dr P involved if it wasn’t. Everyone is aware that Dr P is a specialist in mood disorders, especially Bipolar, and if anyone is going to spot it, it will be him.
Generally, I am still absorbing the information. I have suspected I would eventually end up with this label for a while, but it feels weird to finally have it. Dr G has avoided it so far and I wonder why, yet she obviously had her suspicions or she wouldn’t have got Dr P involved. I just hope she agrees with what has been said and is comfortable with it.
I think this has given me a little bit of hope. Things are changing, which is something positive. Hopefully, the new medication regime will improve the situation. I know it isn’t going to change things overnight, but it might pick things up. There is also the fact that this diagnosis should ensure I get more support. The CMHT referral is going through and they are trying to arrange a CPN before I am discharged from The Priory. The bipolar II diagnosis will give that referral more strength and also mean that the NHS pays more attention when I need support.
Aside from that meeting, I also have my GP coming to see me later today. I am a little nervous as there are a lot of things I have to cover with him, but he is lovely and I need to get over that fear. We shall see anyway.
Into the system... 
