Into the system…

blogging, work, mental health, therapy, disability, benefits and more…

Posts Tagged ‘madosphere

Long overdue post…

with 16 comments

I thought it was time to explain where I’ve been, but I am not planning on staying long. Just a quick hello and goodbye for now. I feel bad it’s taken me so long, but I wasn’t sure what to say and kept putting it off.

I guess I have just been busy in the real world. That and the fact I had therapy. It seems that having a one hour session a week to contain any mentalism and to whine and moan, meant that I didn’t feel the need to come here. I have just 2 sessions of therapy left now, so by the end of August that may change. Maybe I will come back sometime, but I don’t know. My therapist was never keen on me blogging whilst I was seeing her and although I wanted to continue, in part to rebel against her disapproval, it just didn’t happen. I seemingly ran out of things to say.

I’m not sure how useful therapy has been. We have hardly looked very deep or at anything especially long-term. The therapy itself was neither very long term nor intense, but that didn’t surprise me. It might have been what I supposedly needed, but the NHS was unlikely to ever provide it. I will have had a total of 20 sessions, spread over 8 and a bit months. It would have ended a lot sooner had my sessions not been on a Monday, meaning plenty of missed weeks for bank holidays, my holidays, her holidays, sickness, her training etc. She’s away again next week. I can’t wait for the sessions to end and to get my Mondays back.

So aside from therapy I’ve been busy in the real world. My mood was really quite crappy in Feb and it got to the point where I gave in and started Mirtazapine on top of my other meds in the hope it would lift my mood and help me sleep. I wasn’t keen on the idea, but it seemed to help with the mood at least. It knocked me out for all of 2 days before the insomnia returned. Coupled with the arrival of spring, my mood recovered sufficiently that I stayed in work throughout the mini-episode, albeit on just a few hours a week.

Since then my mood has continued to improve and I’m now relatively “well”. My hours at work have been increased steadily and I’m now working part time, roughly 22hrs a week on some vaguely proper work rather than mundane tasks. I’m still internally based, but the work I’ve been doing has been pretty interesting and I’ve even had colleagues to work with, although we were at different ends of the country most of the time. I did get to spend a couple of weeks in London with them though delivering some training, which was awesome and I’m down again for a few days this week. I’m back to more mundane stuff again over the next few weeks though, but generally my employer have been good at finding me things to do and helping me to get back. I genuinely love my employer and my current HR team. They have been pretty instrumental in keeping my mood afloat and life feels hopeful. Dr N (GP incase you’ve forgotten in the last 6 months) said to me the other week he’s amazed at how well things are going and I’m inclined to agree.

The only remaining issue really is my sleep. It is still poor at best. When I have been working away it has been worse than poor. There have been nights where the whole experience has been painful and fear-inducing and I just wish night never happened and that my body didn’t need sleep at all. I take forever to get to sleep, when I do get to sleep I am drifting in and out of consciousness and dream worlds. I have frequent nightmares and strange dreams. Sometimes I am unsure where reality meets my dreams and everything becomes very strange and scary. I wake up and fall asleep dreaming and wake up and fall asleep and dream and wake up etc on a roughly 10 minute cycle for a few hours and then I can’t get back to sleep again and then often it’s time to get up. Or I am just awake for hours and it is only 6am or something when I fall asleep and then I should be getting up and can’t drag myself out of bed. There seems to be little to no sign of improvement, even after reducing the reboxetine in June. I explained how desperate it was making me to Dr N and he gave me an emergency supply of Temazepam in the hope that if I had a back up plan it might help reduce my anxiety about sleep. I’ve taken it on one occasion and it didn’t seem to help, but I’m too scared to take it on a night when I need to be awake the next day incase for some strange reason it decides it might work for once and I can’t get up! Benzos have never been much help though, but at least they don’t seem to make the whole dream/hallucination thing worse like the Z drugs do. Sleepers just don’t work. No chance of me ever getting addicted.

I’m still sleeping badly and basically just putting off the time when I should try and go to sleep this evening by writing here. I’m in a hotel again, which makes it worse. At home I’m made to go to bed at the time when my bloke dictates he wants to go to bed and I am forced to stay there so I don’t want to wake him or the dog up too much.. If I wake up from a nightmare or anything he helps to bring me back to reality quicker and his presence calms me down. Usually his snores are a reminder that everything is fine and normal and the wardrobe isn’t full of strange men trying to chase me (or whatever else decides to infiltrate my dreams and reality that night). Here in a strange hotel room the boundaries between reality and nightmareworld are a lot more blurred because there is no one to calm me down and I can never quite remember where I am. Monday night was bad. Just wide awake all night. No sign of sleep and increasing frustration at the lack of sign of sleep, which never helps. Yesterday was better, but still not great. I had a lot of dream stuff going on and the every 10 minute waking thing, but at least I got some sleep. I’m meant to be trying to keep a sleep and dream diary for the next fortnight for the therapist, but the problem is I often wake up panicked and even screaming, having no idea what it was that was making me scared. I rarely remember much content. I’ve been trying to keep the notebook by the bed and jotting things down, but that wakes me up even more and just prolongs the wakeful periods between the dreamfilled ones. The problem is though none of that sleep is quality. It isn’t restful and doesn’t recharge the batteries. Eventually I have to get the sleep somehow. During the first weekend of the last 2 week stint in London (a month ago) I just crashed and slept a lot (at least by my standards! I was in bed a lot). The second week was not so bad. The first week at home was better and last week less so. This week has been worse again. I could do with crashing and catching up again, but that is unlikely to be an option any time soon with a wedding to attend on the weekend.

If I could just get the sleep issue fixed I really could be convinced that life is getting back to normal and all will be well and good. Life is getting there. This may be “recovery”, but this is definitely holding me back. It still makes the prospect of full-time work scary and possibly impossible. My shortened days at the moment make the sleep issue less of a problem – I start work late and that seems to help.

Anyway, I should stop writing. I was only meant to be here to say bye and sorry for not saying it sooner. I seem to have written a massive post. Maybe I haven’t lost the ability to blog after all. I don’t think that means I’ll be back though.

I haven’t read many blogs of late either. I am very much out of the loop in terms of the madosphere and haven’t even read any TWIM since it moved. In fact I went weeks without looking at a single blog post, but I’ve read the odd one since, just to check you’re all still there. There are a few of you I miss a lot. Some I am in touch with in the real world. Some whom I’m not. If I’ve stopped reading, it doesn’t mean I’m not thinking of you. I do appreciate everyone who has been reading and around for me when I needed it and everyone that ever commented here. I feel a bit guilty for not being around for you, now that I don’t need it so much. Sorry.

I shall sign off. I may be back one day. I may be back another day. I may never be back. I don’t know.

Take care xx

Written by intothesystem

Wednesday, 3rd August 2011 at 10:46 pm

Other things…

with 7 comments

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.

Days pass by…

with 12 comments

I’ve been wanting to write for days now, but not got around to it. Things keep coming up or I get distracted.

I saw Dr N on Friday. It was the first time I’d seen him in weeks. First there was the secretary screwing up incident, then I was at Glasto and then he was on holiday for a couple of weeks. I’d missed him, but we didn’t have long to catch up, as is the norm with GP appointments. I told him I’d met my CMHT worker. When he asked if she was a CPN, he was pretty surprised and seemed disappointed when I said I had a social worker instead. I don’t think I’m the only person to be sceptical about the usefulness of a social worker. I left soon after with a new sick note and a couple of scripts.

On Friday night I took the increased Nitrazepam dose (20mg)  for the first time. Had a night of restless sleep, but more than I had been getting before. The problem is it sent me bat-shit crazy.

I woke up in the blackest of black moods. Far worse than anything I have experienced of late and that is saying something considering my mood over the past few months. My mind was focussed on one thing and I was agitated, irritable and highly emotional. I woke up with a splitting headache and generally felt terrible. I spent most of the morning in bed, virtually unable to stand my head hurt so much and completely unwilling to face the world.

In the afternoon, my bloke insisted on dragging me out to The Peak District with the dog. I felt awful and was not in the mood at all, but didn’t have much choice in the matter. During the walk I was angry and upset and unable to control myself. I was crying and shouting and taking everything out on my partner. At one point we stopped at a bench, my bloke determined to talk to me and find out what was wrong. I was pretty much screaming at him that I hated him and just wanted to throw myself off a cliff. There was one point when I realised that we were close to a steep drop down to the reservoir below and I walked straight at it contemplating a jump. It was enticing me, calling to me. I don’t think it would have worked, but it was all I had at the time. My partner was quick to respond, realising what I was considering and restraining me, pulling me from the edge. I did my best to try and calm down and we carried around the walk and then went home, myself occupied by the black thoughts, occasionally bursting into tears for no real reason. I spent a lot of time wishing I’d been quicker at the edge.

Sunday was miserable too. I’d taken the higher dose again, unsure if it was the Nitrazepam or something else that had caused the dramatic swing downwards. I was less out of control but just low and lethargic. The headache was even worse than the previous day. At puppy school I couldn’t stand up for the pain and had to leave my bloke to do most of the training.

I reduced the dose on Sunday night to 15mg. Halfway between my last dose and my new dose. I slept much worse again, but woke up with a clearer head. I emailed Dr G’s secretary with a message for her, explaining what had happened on Saturday and how I’d felt. I said I didn’t know if it was the Nitrazepam or just a natural swing, but that I would continue to take the reduced dose unless she suggested otherwise. She agreed to that.

I haven’t been sleeping well. I do not see much point me being on sleeping tablets when I still take ages to get to sleep, wake up in the middle of the night for a few hours and struggle with frequent waking and disturbing dreams. 10mg of Nitrazepam is meant to be the highest dose and should cause me to sleep for hours and still feel drowsy the next day. It just doesn’t. Even the 20mg dose didn’t have much of an effect on my sleep.

I don’t seem to respond to sedatives much at all. Zopiclone didn’t do much and makes me hallucinate and for that reason I haven’t been given Zolpidem. Promethezine Hydrochloride, Promazine, Diazepam, Nitrazepam all have had little effect. Quetiapine didn’t sedate me at all, even on 500mg. Depakote did have some effect, but generally just slowed me down all day rather than making me sleep. Only Haloperidol has successfully resulted in sleep, but even that included frequent waking and the subsequent hangover and drowsiness lasted all day.

I wonder if Dr G will find anything else to try. She goes through her psychotropic drugs handbook regularly under insomnia and never really finds a new solution. Melatonin was mentioned and may be the next attempt, but we shall see. She also suggested Temazepam but then prescribed Nitrazepam instead. Something I think she may be regretting. It all could have been very nasty indeed on Saturday if I wasn’t kept safe.

Also on Monday, my CMHT social worker came to visit. I hadn’t seen her for two weeks as she had been on holiday. We talked about what had happened on Saturday and I explained I’d contact Dr G about it. She didn’t seem too bothered. We spent the rest of the appointment talking about things that I spend my time doing. She seemed keen to get me to go to the cinema or swimming and spent far too long labouring the point. I know I have to try and find pleasurable activities, but when you find no pleasure in anything it is difficult. I remember her trying to explain a cycle of depression and how the way to break the cycle is to change our behaviour using CBT methods, but she didn’t have a clue about how the CBT model worked or much else for that matter. It turned into me explaining The Priory CBT model to her as she attempted to patronise and bluff her way through it. She kept saying how she’s only a lay person and doesn’t know much about psychiatry. I found this alarming when she is meant to be my first point of call on all things mental health. Why oh why do I not have a CPN? I keep wondering if it is too early to ask for someone else? I don’t like her, find her patronising and her lack of knowledge scary.

She was also meant to be reviewing what services to refer me to, but had forgotten and didn’t have any of the information. Surely I should be referred to these services asap as I’ll be waiting long enough as it is?! She said she’d put some info about other services in the post for me to look at so we can discuss next time, but I still haven’t got anything. She also asked if I’d got an appointment with the consultant yet, but I still haven’t. She was meant to have chased that up but hadn’t done.  No appointment and no information. The other thing she was meant to have done was refer me to some telephone support service that I can’t remember the name of. They were meant to call me when she had, but she clearly hasn’t done that either. Chocolate teapot comes to mind. A different one to Kate and Chouette’s though! Thankfully I don’t see her again for another three weeks.

Since Monday I’ve just been feeling generally low. Tuesday night was jovial, as we had our Ladies Circle meeting. I am always cheery when there, but it is only holding the mood back for a couple of hours, assisted in my act by alcohol. I suspect people find it hard to equate how I come across there, with the openly manic depressive person most of them know me to be. I’ve been open with the group about my mental health as they all know I’m on long-term sick. They probably wonder what, if anything is really wrong with me, but I can’t help the front. It’s second nature when with people I don’t know very well.

This morning I was left on my own for a short while whilst my partner went to do a couple hours work for his old company. Thoughts were running rife, but I kept them at bay. I am low, but managing to stay safe. I am just frustrated that I still don’t want to be managing. I know I should stay safe, but my thinking is still distorted enough not to want to. I have the insight to know this, yet still don’t want to and don’t know how to change it. It’s a trap I am caught in and I know it has to change, but when and how, I don’t know.

Anyway, I’ve rambled long enough. I hope everyone out there is okay. The madosphere is quiet, but then I guess it is summer. People are on holiday.

I see others are moving on or posting less. Paranoia about anonymity seems rife. I think it’s a shame, but understand why. I hope people can continue to blog safely elsewhere or are happy outside of the blogging world.

I’ve actually considered giving up on anonymity here recently. I’ve even mentioned my first name on one of my posts, although hidden. If anyone that knew me found this blog they would instantly recognise it as me. I think it’s important more people are open about mental illness and I have been trying to be a lot more open elsewhere, but here I am hiding behind a pseudonym. Maybe it is time for that to change. We will see anyway. I still worry about my future, employment and reputation and don’t want my moaning here to jeopardise that.

As an aside – what a lot of tags I’ve stuck on this post! Blimey!