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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.

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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.

A long week…

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

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

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

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

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

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

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

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

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

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

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

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

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

Listen to Seaneen…

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here

I am sure most of you have already done this, but I really do think that everyone should listen to this. It is a fantastic insight into life with this awful illness and hit home with me in far too many ways. I know I’ve read most of what made it into the final play before, but it was strange to actually hear a condensed version on the radio. It made me both laugh and cry (mainly cry!), but after all, I am a manic depressive. Seaneen said it would!

I really hope this play will see more people entering the madosphere and reading some of the talented writing that is hidden in our little corner of the internet. I’m sure any one of my blogroll (which for some reason seems to have disappeared lately.. crap! EDIT: Fixed) could have been turned into a masterpiece in a similar way to Seaneen’s blog, but her blog remains one of the most popular and it is so for a reason. Her writing is fantastic and she has been doing this a lot longer than most of us.

As for me…

I’m still not feeling very well and struggling with things. Seaneen‘s play took lots of pausing and relistening to make it through due to concentration issues. I had my blood tests done earlier today. Aside from that, I’ve basically been sat on the sofa trying to do stuff, but unable to concentrate much. It’s not much use. I don’t feel much use in general. I hate how much of a failure I feel at the moment. I hate how physically ill I feel at the moment. I hate everything.

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Monday, 11th May 2009 at 6:00 pm

No Veins…

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I had to have my blood taken today, but we can safely say I have really crap veins. It took multiple attempts to get the tiniest amount of blood. I’m having the tests to check my platelet count has improved and also to check my thyroid. It seems my last test showed slight hypothyroidism and Dr G wants to check again before she gets the thyroxine out. I’m not sure how I feel about it. I know it may affect my weight and mood, but I’m not sure if it’s just a bit of an excuse. I guess we will see.

Aside from that it seems Dr G has been talking to the ward doctor, Dr C about me and they’ve decided I need extra support when I leave the ward. They want to work with the NHS and refer me to the CHMT. Dr G says I need regular support. She says in the past the NHS trust I come under has been good when she’s had to work with them, so fingers crossed. Also, she wants to refer me for some long term psychodynamic therapy which could be interesting. It’s assuring that she is thinking about what I need after the ward this time.

I had some upsetting news today. Someone that was in when I was here the first time died last week of alcohol poisoning. She just couldn’t stay off the drink even with the help here. It’s sad. I hate that I’m jealous of her, which feels disrespectful, but I can’t help it. I still wish I was dead. I wish it was me, not her. I hate this world. It’s too unfair.

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Thursday, 9th April 2009 at 9:57 pm

October 7th: Into the hospital…

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When I saw Dr G, I had been told I would probably have to wait about a week for a bed to come available, so I was shocked on Tuesday 7th when I received a phone call from admissions at about 9.30am. They asked me if I could come in for 11am as a bed had become available. I told them that there was no way I could get ready for then, so we agreed on 2pm. I then realised I had a mad rush to get ready.

I had to go shopping. I had no clean clothes and I needed underwear, nightclothes and slippers. My partner came home from work and we made a mad dash to pack and get the things I needed. We got ready and drove to the hospital ready for my admission. I was shown into one of the consulting rooms and asked to wait for the doctor. When they came, my other half left me to it and I went through the admissions process. The doctor on duty was terrifying. I didn’t like him and so rushed through the questions as fast as I could, leaving out loads of information. I hadn’t realised that the questions would be forming the basis of my initial notes and that they didn’t have access to the history I’d already given Dr G or I’d have made more of an attempt to be open and honest. I really didn’t like him. After the questions I was shown to my room and then came a short physical examination, which proceeded to make me feel very uncomfortable. He poked and prodded me and then handed over to the nurse. I was left for a while and then the nurse came back and asked me a few more questions, got me to sign a few forms and explained that he would become my “named nurse”. I was then left to settle in. I didn’t know what to do with myself. Slowly I unpacked my things and found my way around the room.

I was on 1 in 30 observations, so a nurse popped their head around the door every thirty minutes. Most of them introduced themselves the first time, but there was no way I’d remember any names. I was far too anxious and uncomfortable. Later someone asked me if I wanted to go to dinner or to order something to my room. I decided I had to brave the restaurant sooner rather than later, so agreed to go and get something. I was on escort, so that meant a nurse had to walk me between the different buildings, including the short walk to the restaurant at meal times. This was a status that was to remain the whole time I was an inpatient. Usually people were only on escort for a couple of days whilst they settle in, but they were anxious that I would do something stupid and insisted on keeping a regular eye on me. It was weird though being followed by a shadow all of the time.

On my first night I was met by a very manic patient, A, who decided she would introduce me to everyone. This was terrifying, but I was glad of it. She dragged me into the lounge and announced me to the fellow patients. I stayed for a while and talked to people, but I was pretty nervous and really wanted to run and hide in my room.

The next day was awful. I spent most of it alone in my room feeling terrible, occasionally interrupted for blood tests, a therapy assessment and other admissions rituals. The nurses would pop their heads around the door regularly and every time I was asked if I was okay, I would say yes, no matter how bad I felt. I began to look for ways to self harm and this became a focus. I didn’t know what else to do.

Thursday brought my first ward round, but I can remember very little of what happened. I can’t even remember if it was multi-disciplinary or one-on-one. I think it was MD, but Thursday ward rounds were usually 1:1 so I can’t be sure. It did bring about a change in medication. The Citalopram was to be phased out and Venlafaxine was to be phased in.

I also got to start therapy, which was a relief. It gave me something to fill my days with and stopped me staring at the wall, thinking about ways to hurt myself. This coincided with a fairly dramatic lift in my mood. I went from being suicidally depressed to hypomanic in a matter of hours and by Thursday evening I was running around the ward with A, both of us as high as a kite. I was agitated and couldn’t keep still, my mind racing at a million miles an hour. I retired to my room when I realised I was probably driving everyone else mad and then proceeded to draw all over my legs and entertain myself by listening to The Ting Tings on repeat. I don’t know what time I got to sleep. It was late. Friday was a continuation of this mood, but things started to darken on Friday evening. The weekend was spent on the ward and my sister visited, bringing cakes and presents.

The rest of my admission is all a bit of a blur. It was a great big melting pot of therapy, medication, mood swings, anxiety, depression, suicidal thoughts, lots of self harm, which was getting increasingly out of hand, ward rounds, nurses, visitors, CBT, art, agitation, friendship, talking, TV and jigsaws.