Let down again

If everything had gone to plan, I would be writing this from the comfort of my room in a care home while experiencing respite care. Like most things, it didn't go to plan and today nearly ended in disaster. I called my nurse this morning to find out what time she would be taking me over to the care home and she told me that, once again, the bed wasn't available as someone else needed it for another week. At the time, I got very angry and felt like giving up, I felt that I had been sidelined and no-one realised that my difficulties were serious. She wanted me to come in for a meeting to discuss other ways of supporting me but all I wanted to do was shut the door on the world forever. Fortunately, my friend had already arranged to come over and she dealt with the problem by telling me she would call my nurse to make arrangements and she would take me to the meeting. She also decided to take me back to her place in the meantime so that I could have a proper meal and could be away from my flat while I was feeling extra vulnerable.

I don't know what I'd do without my friend as she managed to sort everything out for me including collecting my medication and getting me some milk and bread as I didn't have any because I thought I wouldn't be at home for several days. She seems to know exactly what to say and do with me especially when my illness kicks in and I get tired, confused or difficult.

From what I can remember of the meeting this afternoon, I am going to be looked after by the Home Treatment Team which takes the pressure off my friend who has been doing an incredible amount of work looking after me over the past two weeks. As far as I'm aware, this means that there will be nurses visiting me at home to help me through this patch. I know I was given a lot more information than this, but it's difficult to remember what I did an hour ago never mind long conversations that happened in a meeting several hours ago.

I suppose part of me is glad that I'm still at home even though I was looking forward to a bit of TLC away from home. At least I've still got my Sky telly, I know I can smoke anywhere in my home and I don't have to face the anxieties of somewhere new. I just have to get used to the idea of strangers (although I apparently know several of the Home Treatment Team from before) coming into my home and having a say in what I do.

At least the day ended better than it started and even though I feel very exhausted, it's a good feeling and I'm unusually calm. Let's hope it's not the calm before the storm.

Mental and physical health.

I've always been a bit of a sickly bunny although for the first 30 or so years of my life all I had to worry about was my asthma. This was a disease that I thought I could manage as I knew when things were going downhill and usually managed to stay on top of it. After taking part in several clinical trial at Kings College hospital, I felt I was well educated in that area and I still feel like a very well informed patient. Perhaps that's why my GP never bothers to review my treatment apart from occasionally testing my peak flow (basically, how well I can blow) if I ever show up at the surgery.

Then, at the age of 34, I was classed as having a severe mental illness. I know I have this label as I caught a glance at the computer screen while seeing my GP and saw that I was on this list. Thus began the gradual falling apart of my body! I had to do a whole battery of blood tests to rule out possible causes of my broken mind and it was discovered that my cholesterol was pretty high (I think it was somewhere near 14 which is not good). Given that there is a family history of heart attacks and strokes on my mother's side, I was put on statins and sent to West Middlesex hospital to see a specialist.

My memory of this time is a bit hazy (probably due to how ill I was mentally) but I remember having to do a rather nasty treadmill test to check my heart. For an asthmatic who is triggered by exercise, this is not a fun test to do but luckily my heart was fine. I also remember seeing a nurse at my GP surgery who handed me leaflets sponsored by Flora and Weetabix which suggested I ate what amounted to cardboard. Why is it that everything that tastes really good is so bad for you? This is one of the crueler facts of life! Needless to say, I never managed to stick that well to the plan. I blame my BPD as one of the features is an inability to follow through with long term plans, well, that's my excuse and I'm sticking to it.

I'm not sure if it's because of my asthma but I'm very susceptible to colds and flu. If I'm in the same room as someone with the sniffles it's a sure bet that I will get it in a much fiercer version. In April 2004, I was working on a course with someone who had a virus that made him feel pretty rough and the following week I was hit with the same illness. After a few days, I could barely get out of bed and when it got to the point where everything was starting to grey out, I thought I'd better call an ambulance. I thought I'd go through the usual procedure of being taken to A&E, being nebulised (a high dose of the medication I usually used to help me open my airways), given antibiotics and steroid tablets and then sent home.

At the time, I didn't know how ill I was and kept telling the doctors that I wanted to go home as my natural fear of hospitals was kicking in. In the end, I gave in as they told me it would be a really bad idea to go home in my condition and I ended up being in there for eight days. When I was discharged, I thought, quite rightly, that I'd been pretty much cured (although it took about another month for me to be fully back to my usual level). Unfortunately, I'd come into hospital with one problem and left with two as the daily blood tests I'd been having had picked up that I was anaemic and might have diabetes as my sugar levels had been consistently high.

This was quite a blow for me as I'd been struggling to manage several teaching jobs along with a dark and difficult period for my mental health and I felt I'd finally reached a point where I could put all that behind me and go back to being a normal person doing a normal job. The anaemia turned out to be relatively easy to fix as it most likely had been caused by my addiction to painkillers. The diabetes, however, wasn't nearly so easy.

When I finally managed to get a clinic appointment, I was handed a meter so I could test my blood sugar levels and a dairy, shown how to use them and told to return in a few weeks with the results. A couple of weeks later, I was told I had type 2 diabetes, given some pills and told to come back in a few months. This really knocked me for six even though I'd been given a warning about diabetes several years ago. It was during the time that I'd been doing the asthma clinical trials and they suspected that I might have diabetes. In the run up to doing the test for this, I wrote in a journal I'd been keeping that I really hoped it wasn't diabetes as I didn't think I could cope with it. At the time, I got the all clear and the only advice I was given was to "eat more broccoli". Hmm, something not very effective about that, I think.

There are guidelines outlining what treatment you should expect to receive when you're first diagnosed with diabetes. I know this because I'm the sort of person who has to look up everything I can find out about my conditions and medications. This is probably something that annoys doctors as I'm sure they're not keen on informed patients who can't be fobbed off. One of the things I was supposed to get was a psychological assessment which would have been great as it took me a long time to even acknowledge that I had diabetes and, even now, I still struggle with the concept. Sadly, this never materialised and it quickly became clear that most of the doctors would look at my mental health diagnosis and act on that. They appeared to make the assumption that because I had a mental health team, they would sort out how I was dealing with my diabetes without considering whether or not anyone in that team had any knowledge of the condition. I've also lost count of the number of times a diabetes specialist has treated me as if I haven't got a functioning brain. Don't they realise that mental illness is not the same as a learning disability? A friend of mine has told me to remember that doctors are not infallible but surely they should know that mentally ill people can still be high functioning.

Since my diabetes diagnosis, I've had a number of physical health problems or things that need investigating and, in my mind, these things have increased in number since my mental health diagnosis. At one stage, I was having frequent blood tests and my GP spotted that my white count was far too high in all the tests. This prompted a referral to a hospital specialist and triggered a bad depressive episode for me as no-one had told me anything beyond the fact that my white count was high enough to need urgent investigation. Sometimes, all that information on the internet can be a bad thing as I did my usual investigation and only found bad things. As it turned out, my unusually high white count is probably down to one of the drugs that I use to control my asthma which is not something they tell you about when they say it'll be good for you and keep you well!

Over the last few years, I've found it's often better to not got to my GP with little things that niggle me as he seems to have this knee jerk reaction that ends up with me panicking as I wait for yet another hospital appointment. I've come to this conclusion after thinking I might have cancer in my eye (which was just a mole on my retina) and my mouth (this lump has probably always been there and gets sore if I smoke too much, am stressed or eat too much spicy food). Sadly (or maybe not), I've got a friend who thinks differently and she's always nagging me to get myself checked out.

At the moment, I'm waiting for an appointment to see the eye specialist at the hospital as the pressure in my eyes is too high. No-one has told me how high so, once again, the evil little voice that I sometimes hear is telling me that I'm going to go blind and that my eyes are going to be the first thing that fail because of my diabetes. Part of me thinks that this is poetic justice for missing my last appointment at the eye clinic. I was already a patient there initially to investigate the patch on my retina but I lost faith in them when they denied I had a cataract (which the optician has confirmed three times) besides, how can they expect people to remember appointments when they're 18 months apart and a confirmation letter is never sent out.

I'm pretty sure I won't lose my sight in the immediate future but the internet has already wreaked havoc in my disordered mind and I'm dreading the thought of yet more medication or even laser surgery! In the meantime, I'm battling with my diabetes as the new medication I was put on last week doesn't seem to be keeping my blood sugars in check. I'm a bit undecided about it as the only symptoms I'm getting are being constantly thirsty which means I drink more fluids resulting in needing to pee several times an hour which is a lot better than the frequent stomach upsets that I was getting on my previous drug. Oh well, I guess it means I'll be back at the hospital much sooner than I had hoped. If I keep this up, I'll be entitled to a chair in the waiting room with my name on it!

What's my story?

Sitting around doing next to nothing today, I realised that I probably didn't have a full introduction to these ramblings and maybe it would help me to "vocalise" some of my history. Maybe the next time I have a new care worker, I can point him/her to this site instead of having to remember all this stuff.

I'm a late sixties child and nothing remarkable happened in my early years although I had breathing difficulties when I was born (probably why I've had asthma all my life) and was put into an incubator. Maybe this explains the problems I have relating to my mother as I've never felt close to her and she seems to be spending a lot of time trying to make up for this resulting in a lot of problems between us. Between the ages of 6 and 9, we lived in Ireland and I remember this as a mostly good time (apart from the nuns that taught me!) playing with lots of other children and generally having a laugh. Even at this early age, I had a weight problem, I can remember overhearing my mother telling a friend that she had no idea why. I ate the same as my younger brother and was always playing outside (this was before the age where children spent most of their time in front of the t.v. or playing on computers).

Just after my 9th birthday, we moved back to England and this seems to be where the trouble started. I joined the penultimate year of a local primary school and was quickly singled out, firstly, for being overweight and, secondly, for having a lisp and a strong Irish accent. Pretty much everyone else in the class had been together from Nursery and it seemed to be very hard to make friends. This was probably the point where I started to become a "people pleaser" as I did many things to make people like me including stealing to order from local shops. It was during this time that a group of boys in my class took advantage of my naivety and got me to do things that I still can't talk about but which haunt me still.

Secondary school seemed to be torture for me. I was very much a loner and this was exacerbated by my interest in Classical music. A teacher once told me that people found me strange because of my musical interest and I should read girls' magazines so that I would be able to talk to them about something (needless to say, I never did this). My music teacher spotted that I had some talent and arranged for me to apply for a music award which would pay for a place at Saturday morning music college so that I would be around people who had similar interests. My hopes were raised to an incredible height by this only to be smashed to pieces when I received a letter rejecting my application.

My mind finally broke and this triggered my first suicide attempt. I had left a suicide note at school which was found by a teacher and they found me before I had chance to do anything serious. I don't remember too many details (probably because I was very shut down) but I do remember my parents being furious. My mother made me write a letter to the police saying I'd been very silly, I didn't mean anything by my actions and I'd never do anything like it again. Years later, I learnt that my parents had been advised to take me to a psychiatrist but they decided everything was fine. This seems to be their approach to my mental health - pretend bad things aren't happening and everything will be okay. The result for me was my ability to pretend that things were fine even when they clearly weren't.

After an appeal by my teacher, I was given an audition and gained a place at junior college and my parents begrudgingly allowed me to go as long as they didn't have to pay anything. However, I wasn't allowed to go on my own, my father had to drive me there and back which probably wasn't his ideal way of spending a Saturday. At this point, I was 14 and most girls my age were going to parties and hanging out together. Not me, my parents refused to let me do anything like that and I wasn't even allowed to play in the next road. I couldn't take part in any after school activities as my youngest brother (born when I was 10) had started school and I was expected to take him to and from there every day. As a teenager, it was depressing to be standing with what I considered to be old people at the school gates every day.

People say school days are the happiest of your lives but that's not always the case. I was a very angry, aggressive child forever getting into trouble. Most of the time I had no idea how I arrived there or something that I thought was a good idea suddenly turned bad, like the time I set a fire under a staircase. I think if it hadn't been for my musical talent, I would have been expelled either that or the fact that my catholic parents and teachers didn't want to acknowledge my growing mental illness.

Somehow, I made it to the end and gained a place at music college to do my degree. I thought that this would be my gateway to the outside world but my parents, in particular, my mother, were having none of this. Although I was entitled to a place in a hall of residence, they weren't prepared to let me go. I tried to move out a number of times but each time they put barriers in my way. their usual response was that I wouldn't be allowed to take anything from the house and they wouldn't support me financially. The "people pleaser" in me stopped me standing up for myself which is something I'll always regret. Maybe if I'd left home at an age when my peers were learning to be independent I'd have learnt to cope with difficulties. Instead, I never felt like an adult as I made my way home on the train each evening.

By this point, I'd began to drink heavily and usually arrived home with a hangover. I'd learnt to hide what was really going on as I knew it was better to walk in with a smile on my face and say everything's fine. In fact it wasn't and I had at least one major depressive episode that needed intervention from the college counsellor. Once again, I somehow made it through and graduated with a good honours degree although I still tell myself that if I'd actually done some proper work, I'd have got a first.

While I was doing a post graduate course, I sort of fell into class teaching. It was a baptism of fire as I'd had no training and I remember very little of that period as I was still drinking. Towards the end, I had what I would call my first major breakdown. Previously, I'd been able to manage my depressive periods but this time I locked myself in the toilets in between lessons as I couldn't stop crying. I'm not sure how long this went on for but, like my parents, I chose to ignore it.

I eventually went on to do my teacher training and then ended up with my dream job - teaching drums. In fact, I ended up with my old percussion teacher's job so it was a bit like coming home as I already knew many members of staff from when I was at school. At this point, I wasn't in a financial position to leave home (so I thought) and besides, I had no idea what was involved. Living with my parents turned out to be a very bad idea though as my mother objected strongly to people from work phoning me and on more than one occasion she insulted my manager.

The job itself was ideal for me as I no longer had to deal with the politics of a staff room. I spent my days driving round the countryside going into schools for maybe 3 hours at most doing the thing I loved most in the world, music. There were a few times in the week when I had to work alongside other people and these short sessions worked well for me.

Five years into that job, my mother finally got sick of my living at home and I ended up buying a place of my own. At last I was free and it felt unreal, it was as if I was playing at being an adult even though I was 30 by then. I could go to bed when I wanted and pretty much do what I wanted. Okay, I had to deal with my mother phoning me several times a week as she couldn't really let go, but I was finally my own person.

Then I started to find out what that person was really like and I wasn't sure I liked her and neither did anyone else. This hit home when I decided to have a flat warming party and invited all my "friends" from work. You've no idea how bad it felt when only two people turned up very briefly. There I was with loads of food and beer and no group of friends. I thought I'd try to find local friends and started going down the pub as I thought that was what other people did. Again, the social awkwardness kicked in and, after a few weeks, I realised that the only person that knew me was the barman and he only knew what my "usual" was so I decided it was cheaper and less painful to get drunk at home. Thus began my period of getting up, going to work, going home, getting drunk, going to bed and getting up again.

Things at work were no better as my social difficulties were starting to cause problems there. I had numerous clashes with managers, usually over longstanding issues. this was not always my fault and I pointed out to them that they were as much to blame as some problems had been allowed to fester for years! There seemed to be quite a few evenings when I drove home in floods of tears for no apparent reason and I eventually plucked up the courage to see a counsellor. In fact, I saw two different counsellors in this period but didn't make much headway with either of them.

During the Easter of 1992, I was teaching on a residential music course when I had another major breakdown. This one came completely out of the blue and really knocked me off my feet. I couldn't even manage to teach without crying and frequently had to shut myself in the toilets to have a good sob. The rest of the time, I shut myself in my room and hardly showed for mealtimes. I'm not sure what my colleagues thought, I know some of them were aware how low I was but they chose to ignore it, probably in the hope that it would go away. Fortunately, I had a few days after the course before the start of term and managed to get back to what I considered normality.

I thought it was just part of my normal mood cycle and that it would be normal for me to have something like this every ten years. Above all, I thought I was safe for many years. How wrong I was! Towards the end of November, there was an incident at work where my ability and standing were brought into question and this triggered an even greater depressive episode. This time, I was seriously suicidal and it ended with me going to my GP and asking for help as I knew I couldn't cope any more. This was two days before Christmas which has never been a good time of year for me.

I tried to go back to work in January hoping that Prozac was the answer but it quickly became clear that I still couldn't cope and I was told to take sick leave. Over the next six weeks, I jumped many hurdles including seeing my first psychiatrist and admitting that I not only had mental health problems but also drink and drug addiction issues as I had been using painkillers in increasing doses for a few years in order to help me sleep.

At that point there were no procedures in place at work for people on long term sick leave and I went back to my full work schedule towards the end of March. This proved to be a bad move and I ended up taking more and more sick days as I couldn't cope with more than a few days at a time. I had acquired a social worker by this time and had also been referred to the psychiatric day unit. On several occasions, the issue of hospital admission had been raised but I kept refusing to go. Looking back on this, I think it was a mistake as it might have got me back on my feet. I was just too scared to go as the thought of a psych ward was too terrible to contemplate plus, my parents would find out and I couldn't deal with their reaction. The doctors didn't push me too hard on it, after all, I wasn't a danger to anyone except myself and they probably considered my self harm to be moderate.

Eventually, occupational health got involved and they deemed me fit to work but only at a greatly reduced level. Over the next two years I got pretty close to a full recovery before someone at work panicked over something very minor and suddenly I was told I couldn't work until occupational health said I could. This was in September 2004 and it took until the following April before I was referred by my manager. Fortunately, I'd teamed up with a mental health advocate who attended meeting with me, spoke up for me and wrote numerous letters on my behalf. Looking back on it now, it's clear my employers had had enough of my poor attendance (which was not helped by everyone's attitude towards mental health problems) and had already decided to get rid of me and in August 2005, I had my fitness hearing where they told me I was losing my job because of my health.

In preparation for this hearing, I'd asked for all my occupational health records. After reading them, it became clear what had been going on. Conversations that I thought had been confidential and were just someone offering friendly support were recorded in detail and there was an allegation that I had assaulted someone. This last bit probably explained why people stopped talking to me and calling to see if I was okay and, more seriously, why I'd suddenly been told that my employers couldn't let me be near children while I was self harming. I think this rule hurt me the most as I've never been a danger to other people only myself.

It's taken me a long time to accept losing my job. Even now, I find myself thinking "if only" and I know that because of my mental health history and other people's prejudice, I will probably never be able to teach children again.

Here comes the storm.

It seems that difficult (or in my mind, bad) things don't seem to happen individually but, like buses, seem to vanish for a while only to come along several at a time. Things started just over a week ago when I was expecting a home visit from my CPN. There was I, all prepared with the kettle ready and a fresh pack of chocolate biscuits and I waited, and waited, and waited. At this point, I usually hear the annoying voice that tells me she's not coming but I knew that she's often late so I just told it to shut up. By the time I realised that she wasn't coming, it was too late to phone to find out why and as it was Friday afternoon, I wasn't going to get any answers soon.

My social circle is very small and both the people that I could have turned to for support were abroad (talk about bad timing) so I was left with no-one to turn to. Over the weekend, I sunk very low and ended up shutting myself off from everyone until the following Friday when I had an appointment with another member of my care team. I told him what had happened and although he said words that were sympathetic, he had no solutions. I myself was somewhat distracted during this appointment as I knew my van was sitting in the car park with an open driver's window due to some problem with the electrics. I did, however, ask the receptionist what had happened to my nurse the following Friday. She confirmed that the appointment had been booked and that there wasn't any explanation apart from the fact that maybe my nurse had forgotten about me. Given how important consistent relationships are for me, this was not good news, especially on a Friday as there's no support over the weekend!

Feeling pretty low and left out, I went home to try to sort out the problem with my van window thinking it may just be a piece of grit causing the problem. Half an hour after trying to work it out, I gave up and called the AA out as I knew I wouldn't be able to go indoors and just leave my van. I've already been broken into twice in the last year or so and didn't fancy my chances of still having a van in the morning. They were pretty quick and the guy that turned up was, after a generous dose of WD40, able to shut the window. The downside was, it would need a proper repair job or else I could just never open that window again.

Okay, I thought, there must be plenty of garages near me, this should be easy and I can do it without having to call my father for help (he spent his life repairing vehicles but he's quite old now and if I asked him, I would then have to deal with everything my parents would want in return). Not being mechanically minded, I was getting stuck looking for a suitable garage and ended up calling the one where I bought the van (and where my father used to work). They had a pretty good idea of what work might be needed - I'd be without my van for two days and be looking at a £300 bill.

Cue major stress and anxiety - driving to the garage would be tough never mind getting back. I looked at hiring a car but at a minimum cost of just over £100 it would be way too much for me, even the £300 bill was going to be hard on my pocket so I would have to brave the buses. Fortunately, one of my friends had returned from holiday and she was able to give me a lift back from the garage. She also suggested I ask if I could leave it the afternoon before it was booked in as it would be an impossibility for me to be able to drive (or even get up) before 8 a.m. (blame the drugs and insomnia for that one).

So far, so good but then the real bombshell hit the following day when the garage phoned me to explain exactly what I needed. Apparently I needed a regulator and the bad news was that Nissan were charging £514 for the part. Even the garage thought this was expensive which means it must have been really pricey if even they thought it was excessive. Add in the cost of labour and I'm now looking at a bill of £710 just so my window can open and close. Having driven over the weekend, I knew it had to be done as it was incredibly stressful for me to drive around with the window closed (it's part of my "routine" to have the window open and any change to my routines is very stressful for me and can contribute to a relapse). It would also take time to get the part so I'd be without my own transport for even longer.

By now, I knew I was heading for serious trouble. The combination of things going wrong with being home alone is never good so I decided to bite the bullet and try to get to my pottery class on the bus. I knew it would take about an hour (as opposed to 10 minutes driving myself) but at least I wouldn't be on my own, I'd be able to find out where my nurse was and I'd be able to get a lift home afterwards. I managed to sit on my anxiety during the journey but by the time I got there, I was almost in tears due partly to the fact that I realised I had two other big expenses related to my van due in the coming month.

Fortunately, the receptionist was sympathetic to my troubles. Unfortunately though, my nurse was on leave all this week and I couldn't see whoever was on duty until after 3 p.m. which was no use to me if I wanted a ride home. That wouldn't have been much use to me though as I can't deal with people who don't know me when I'm heading for a crisis. I asked about the cover that my nurse was supposed to have arranged and was told there was no note of it.

Arrangements were made for a member of staff to phone me today to talk about everything that's happened in the hope that a solution could be found, even just off loading things can sometimes help. Well, I've waited for that call and it hasn't happened. I may be paranoid sometimes, but this looks like a real attempt to push me into a full-blown crisis. I did the right things and asked for help but, for some reason, it's not been forthcoming and it's now got to the point where little things are now really bad.

What makes it worse is the fact that I feel let down by my nurse. I had a series of really poor care co-ordinators which didn't help my mental health and I thought I'd landed on my feet with this one as she really seemed to care and appeared to be reliable. How wrong I was, maybe the world has better things to think about than my well-being and at the moment, I think I'm joining them in not caring about whether or not I'm well or even here.