Being cancelled on

Last week my A, my community nurse, cancelled on me. “She does that a lot, doesn’t she?” a friend remarked when I told her. Well, now that you mention it… :/ A phoned and rescheduled to see me at my next psychiatrist appointment which is next week. I’ve been really tempted to just cancel both altogether and be done with it. When I get cancelled on it just makes me feel like I’m not important and less of a priority compared to other clients, and I think “Fine, don’t bother then.” As for the psychiatrist appointment, last appointment when I met him for the first time, the appointment lasted literally 5 minutes, so I don’t even see the point in going. The round trip to get to the mental health centre takes about 5x that alone.

Part of me knows that it’s the BPD part of me that’s wanting to react in this way. That mentality of wanting to be the rejector as opposed to the one being rejected. “If you cancel on me, I’ll cancel on you!” and wanting to “test” her to see if she’ll follow up with me if I cancel altogether. Unfortunately or fortunately, my anxiety around making phone calls probably means that I won’t end up cancelling, and I’ve never been able to bring myself to simply not turn up to an appointment- that just seems rude. So more than likely I’ll just go and nod and say that everything’s fine. Guess I’ll see what happens.

Besides that, my mood’s been a bit up and down. One moment I’ll feel okay, and the next moment it’ll plummet. I had been feeling empty, and being stuck behind a computer doing an online unit and assignments has not been great for my mental health. I took a small OD a few days ago and downed 500mg of Seroquel. Which, considering some people are prescribed 500mg daily, shouldn’t be that much. Except that I don’t take Seroquel any more, and even when I did I was only on a very small dose, so 20 tablets was quite a bit for my body. I slept about 20 hours before awaking, and when I did I ended up vomiting and blacking out a couple of times and could feel I had tachycardia. It took another 8 hours before the drowsiness fully wore off. It was just self-harm, I knew I wouldn’t do any permanent damage from it. The last time I had taken an OD was about July/August last year and I guess a part of me is also afraid of getting better. I’m also hoping that now that I’ve got that out of my system, I’ll be able to get through my three fieldwork placements this year without getting unwell or any self-harm episodes. Considering my placements start next week and they’re three blocks of seven week full time pracs all in a row, I better get my shit together. This is my seventh year in an undergrad course in uni, which is long enough.

BPD and Recovery

On Wednesday I attended a Youth Leadership in Mental Health Forum, in which I was one of the presenters. I spoke about using my lived experience of being hospitalised under the Mental Health Act for anorexia to advocate for eating disorder services and rights of consumers, and also being a student occupational therapist who has BPD. It’s always a bit of a rollercoaster of emotions when speaking about your own experiences. There’s the anxiety and lead up to the event, the initial high and sense of relief immediately afterwards, then the coming down and self-doubt about whether you actually did a good job or not. My emotions were complicated even further by the fact that eight other students from my OT course were in attendance, and now all eight know that I’ve been hospitalised involuntarily and have had anorexia and have BPD. Which I guess isn’t a huge deal given I am somewhat open about my mental health issues and most OT students are quite open minded. I got some nice feedback from a few of of the OT students, which was nice. Though it felt a bit awkward when I was sitting with them at lunch time and one person asked the group which speakers were their favourite. Me being sensitive and self-critical, when they mentioned other speakers who they enjoyed listening to, it made me think that compared to the other speakers I must be really substandard. Hmm.

One of the points I raised in my talk is the way that BPD has been taught in the OT course. BPD has tended to be painted in quite a negative light, without being very recovery focused. One of the OT students said that she also noticed this in class, and actually asked the tutor why it wasn’t more recovery focused. She said that the tutor told her it’s because “Most people with BPD don’t recover.” Umm, WHAT?!! Excuse me?! No, no, no, no, no! It was really quite upsetting to hear that my OT tutor has this belief and attitude, especially as I had raised the issue last year of the prognosis of those with BPD being portrayed as being very dire in class and with that had revealed to her that I myself have been diagnosed with BPD. It also made me very frustrated and angry. It’s so incorrect that people with BPD don’t recover. There is research that shows people with BPD can and do recover. One famous example is of course Marsha Linehan, the woman who created DBT. I’ve seen anecdotal evidence from people I know online who have recovered from BPD and I know even more who may still struggle with BPD, but are able to live a functional and meaningful life. It is so sad when I see mental health clinicians harbour this attitude and I just hope that those of us with BPD again and again prove them wrong.

Update

It’s been a long while since I’ve written here. There have been times when I’ve thought about writing a post, but it’s been so long that I didn’t know where to start.

Eating wise things have been up and down and it’s only been these past couple of days that I’ve been back on track. Once home straight out of hospital, I was still eating quite adequately and what I wanted. Slowly over time, I found myself cutting out more and more, and the list of foods I was afraid to eat became longer and longer. I then started bingeing and purging regularly, and it felt like my eating disorder was back where it was in 2009/2010. During this time I lost 2kg at most, I’ve never been one who’s been able to lose weight through purging. It was this that gave me the kick I needed to recover last time, and right now I’m in a similar position. It’s when I see the number on the scales go down that it spurs me on the want to keep restricting and take it even further, but when I’m maintaining my weight from bingeing and purging, I think to myself “What’s the point? I may as well be eating what I want when it’s a much more enjoyable and satisfying way to be maintaining my weight.” And so I put away my scales to reduce that temptation to weigh myself multiple times a day, have been trying to consume a balanced diet, and have refrained from bingeing and purging. It’s now day three that I’ve managed to stay on track without engaging in ED behaviours, hopefully it can stay that way. I confess though that I have weighed myself once, and it was reassuring to know that even if I eat without restricting I won’t balloon and gain 5kg overnight- my weight has remained within a kilo of 43kg, the weight I was discharged at.

I’ve mostly avoided seeing any health professionals and cancelled two appointments with doctors at A St. The psychologist from A St I saw a few times while in hospital also gave me a call asking me if I wanted further sessions with her. “No thanks,” I said. I did attend one appointment with my GP, but have not seen her since despite her telling me she wanted me to come in weekly because I just don’t think it’s necessary. I saw the community mental health nurse once, but only because she turned up at my house out of the blue one day after I missed a call from her and ignored her voicemail asking me to call her back. I received a letter in the mail informing me I have an appointment with a dietitian, but I’m not going to attend that either, especially if it’s the same dietitian I saw whilst an inpatient. After my experience of treatment there, I have no intention of attending any appointments at A St. I also received a letter from the group therapy place inviting me to start with their “Dealing with Depression” group, which just leaves me confused because the intention was always for me to do DBT. The depression group will use a CBT approach, which I’ve done before and do not find helpful at all. So I will have to follow up with them and enquire about this.

After having to defer half of my semester 1 units halfway through and the whole of semester 2, also halfway through, I return back to uni starting tomorrow. I’m not looking forward to it at all. Uni is a major trigger of stress for me. On top of that, because I’ve already completed half of both units before having to defer, I’m pretty much having to repeat all the work I put in last year. It feels so frustrating knowing that I attended all those classes and completed all that work last year just to have to start all over again this year. The majority of my friends of course have progressed to the next year, so I’m having to start the year with unfamiliar faces and a year group that have already had two years together to form their friendships. Oh, and last year I was also found guilty of General Misconduct so there’s also the concern that the lecturers who know about it think I’m a shit OT student who behaves unethically and in an unprofessional manner. Luckily that’s none of the lecturers I have this semester, but it will be the lecturers I have next semester. Oh, and the course coordinator who’s assisted me throughout the course when I’ve been admitted to hospital also knows, so I can’t go to her for help now because I’m too ashamed and afraid of what she thinks about me. So yes, I’m gearing up for a really fun year at uni. Provided I can actually finish the semester for once and pass.

Home from hospital

No matter how many times I go through this, being discharged always brings about a mix of emotions. Feeling glad to go home yet terrified at the same time. I was discharged yesterday afternoon. The first few days back home are always hard. Feelings of loneliness and everything being too much threaten to push down on me as I try to push them back.

I’ve reluctantly agreed to be referred to the group program. C, who runs the group program and is also my tutor at uni, came to see me briefly. One of the things she asked me is how I feel about her being someone who runs groups as well as my tutor. I wasn’t sure, and told her so. She said that although I may see her at the group place, I probably won’t have her as the actual group therapist because I did already know her. For the actual pre group assessment, someone else came to do that with me. It was explained that to do the DBT group, one must first complete two other groups before being assessed again for DBT. It was decided that I’d first do Introduction to Group Therapy then the Emotional Regulation group. There are two types of DBT groups on offer, DBT skills which runs for 16 weeks, and the full DBT program which runs for a year. All groups go for 2 hours weekly, with an additional 1 hour individual therapy session weekly for the full DBT. During her explanation of DBT, she told me that Marsha Linehan, the creator of DBT also had Borderline Personality Disorder. Is that supposed to make me feel better about it? When I asked her whether there is a waitlist for groups, she answered that sometimes there is, but they’re usually able to get through it pretty quickly. Given I was on the DBT waitlist for a year last time I was referred, it seemed at odds with my experience. I suspect what’s changed is this time I’ve had seven ODs resulting in ED treatment and five psych admissions under my belt plus I’m not seeing anyone on an outpatient basis. Last time I was referred I was still seeing a private psychiatrist, plus I’d only been in the ED twice and had one psych admission.

I’ve decided to go part time at uni, which means dropping out of two units this semester. In hindsight I should have done so at the beginning of the semester. Up to the point where I was hospitalised, I’d attended all classes and completed all the work, so it feels like such a shame that all that time and effort is going to waste. There are both pros and cons to going part time. The pros are that it means I will be less stressed and have more time to look after myself and do other things. The cons though are that obviously it will add more time to my degree and my friends will progress to the next year without me. I hate feeling left behind like this, while it seems everyone else my age has already graduated and gone on to get real jobs.

Full time uni

Sometimes I wonder whether or not I should do part time at uni. For the past two years I’ve been doing full time, and somehow or another, have managed to pass everything. But I also think of the struggles it took to get through it, and that it may be worth it to cut back a bit on the workload. So that I’m not so exhausted and not so stressed. So that I don’t get completely overwhelmed and panic when I have four assessment tasks all due in the same week. So that I have time to relax and do the things that I enjoy and keep me well. Because if I’m honest with myself, stress is a big trigger for me, and I’d like to stay well for as long as I can. And unlike last semester where I had a GP who could write me a letter when I needed extensions on assignments, I don’t even have a GP currently.

At the same time, I reason with myself that I got through the past two years, so I should be able to get through this year and next too. I don’t want to extend my time at uni for longer than I have to. I’ve already been at uni for so many years while friends and people I know have graduated on gone on to get real jobs. Other people’s opinions and approval also matter to me, and I’m afraid of what friends and family may think. That I should just continue on so I can finish as soon as possible or that I’m just being slack. Some people manage/d full time university and jobs with many hours (as my boyfriend has told me he did). I don’t want to feel inadequate for not even being able to manage what everyone else is able to.

Content

It’s been over a week now that I’ve moved out, and I’m beginning to settle in and even enjoy my new found freedom and independence. At first there were bumps, as I was pushed out of my comfort zone. I missed my home, where I had spent the majority of my life. There were tears as I wondered whether I could really cope and even contemplated picking up and going back. But now I’m glad I took the initiative to escape a situation I did not want to be in.

Moving to a new area, I went to see a new GP close by. He issued me the scripts I asked for; Pristiq and Seroquel, with enough repeats to last six months. Prior to this I had still been having only a week’s worth of medication dispensed to me at a time. Though it may be a little deceitful of me not to disclose this to the GP, I was tired of having to go to the pharmacy every week. Besides, I haven’t overdosed in 9 months and if I really wanted to, I could anyway. And for the moment, I don’t. Things are going well. I’ve finally moved out. I passed all my units at uni and will be going into my third year of occupational therapy in 2013. I have friends, and I even have a boyfriend now. The guy I’d been dating has become my boyfriend, in fact my first at the age of 21. And I too am his first, at the age of 25. For now, I am rather content.

The small circles of mental health consumer advocates

We had a guest lecturer this morning for neuropsych, a woman who has bipolar disorder. I thought her presentation was great; she told us a bit of her story, she emphasized that a person is not their diagnosis and that mental health issues should be treated on the same par as physical health issues. She was rather entertaining too, she told us that psychiatrists have all these letters following their name on name cards signifying their qualifications, so she thought she’d put letters in her name cards too. QBE she has, which stands for Qualified By Experience. Hah, now I have a qualification I could put next to my name too. :P

When she walked in the lecture theatre, I thought she seemed vaguely familiar, but I wasn’t entirely sure. I knew she wasn’t someone I’d met in hospital, but otherwise couldn’t think of where I’d have met her before. It’s only now at night that I realise I have actually met her, very briefly at a community music festival promoting mental health in 2011. We were both volunteers at this event, though for different organisations. I must say, I’m pretty impressed at my memory, given it was about 15 minutes we actually spoke to her, over a year ago! What really prompted my memory was an experience she had with stigma she shared with us today, which was the same story I heard from her last year. She told us of her psych hospital admissions in which she barely had any visitors nor any flowers, yet when she was in hospital for a physical concern, her room was filled to the brim with flowers. I could reflect and relate to her experience, looking back at my times in hospital. My family thought it needed to be kept hushed up, and during all four admissions I’ve received a total of one card or gift- flowers from a group of lovely friends when I spent my birthday in a psych ward last year.

Whenever we get told we’re getting a guest lecturer in neuropsych, I always wonder whether there would be a chance it’d be someone I knew or had come across before, whether as a patient 0r a mental health advocate. It’s funny that it’s now actually happened which shows how small the circles can be in the area of mental health! I’m glad anyhow it’s someone I met when I was in my mental health volunteer role and not as a patient.

OT in mental health wards

It can be rather interesting listening to the things that OTs supposedly do in mental health wards/hospitals when I attend lectures. It’s a bit like, “Woah really, they actually DO STUFF??!” I should probably have a more positive attitude towards occupational therapy, especially as I’m studying to become an OT… I am only referring solely to OTs who work in psych wards though, as I do know that those in outpatient settings and rehab wards do a lot with their clients.Let’s face it, those of us who have been in psych wards possibly haven’t found occupational therapy to be all that helpful.

In the lecture yesterday, the OT used a person she had worked with previously as a case study, a young man who had been involuntarily admitted to hospital. According to her, an OT would do assessments with him, would do an interview and a Mental State Examination, establish a therapeutic relationship, set goals with the client, carry out interventions… Obviously I can’t claim to be aware of all the happenings within the ward, but I have very rarely seen OTs work one on one in such depth with inpatients. I thought all they did was conduct beading, painting, bored board games or cooking activities! Oh, and possibly a few groups in between.

So me being the cynical and pedantic person I am when it comes to provision of mental health care, I had to go up and ask the lecturers about whether this actually happens. I gave examples of three of the wards I’ve been on, saying that I haven’t really seen that happen. “Is this from personal experience, family members or….” asked one of the lecturers. “Umm, personal experience,” I answered. I can’t quite remember all of what they said, but they agree that in acute inpatient wards it can be more group work as well patronising, primary school level activities such as the art and sports ones. One of the lecturers explained that it also depends on how well the client is, as those who are on acute inpatient wards may not be ready to participate in the one to one actual occupational therapy intervention. Oh, and now all three lecturers who teach this unit recognise me. Heh, awkward.

I’m curious though, has anyone actually experienced proper occupational therapy in mental health, whether as an inpatient of outpatient, that was helpful?

Mental Health Act & A St OT

I guess I knew that when I started studying occupational therapy, there would be certain topics that would be difficult in relation to mental health. This week’s lecture was on the topic of the Mental Health Act, followed by an OT from A St come as a guest lecturer. I decided not to attend this lecture, especially not at this time of the year when I’m just trying to push through. I figure if the Mental Health Act ever comes up in an exam, I’ll just say it’s when “You’re locked up and get your rights taken away from you.” That’s how doctors have put it to me when I’ve been threatened with it, surely it must be an acceptable answer then, right?

As for the OT from A St, well, I’m not particularly interested in anyone from A St at this point in time. Yeah, I’m generalising based on the two clinicians I’ve seen there, but oh well. Though I reckon the waiting room they have in the outpatients department is enough to put anyone off before they’ve even met a member of staff.

 

Because people with mental health issues are dangerous and all, glass is definitely needed to protect the reception staff from us.

The good news though is that because of my prior knowledge of issues related to mental health, certain topics are fairly easy for me to understand, and some of the content I already know. DSM IV, the difference between a hallucination and a delusion, the Mental Health Act and early intervention? I’m all over it! Doesn’t really make up for all that I don’t know in my three other units this semester though. Heh.

Us and Them

Taking a mental health unit this semester in my occupational therapy course, I get the sense that there’s an “us and them” way of thinking. We’re the student health practitioners and they’re the people with mental health issues. Especially when talking about someone who is in a psych ward, described as “very, very unwell” by my tutor. I suspect there’s the belief that one of them couldn’t possibly be an OT student among us. Because if you have a mental health issue and have been hospitalised for it, you’re definitely not functional enough to be studying something like OT.

There may be a number of factors contributing to this. A proportion of students have possibly never been exposed to mental illness or people with mental illness before. It may be how the unit is taught. The examples and case studies used have tended to be rather stereotypical. A 48 year old man who appeared “dishevelled,” “rambled incoherently,” and “held a fixed, staring grin which was punctuated by odd facial grimacing,” a 67 year old man who is institutionalised and “has never been employed,” and a 30 year old woman with BPD who’s “participating in vocational rehabilitation as part of her OT program” (I assume this means she was also unemployed). And of course, all the examples involving a patient who’s been hospitalised have a psychotic illness. Because clearly, there are no other mental health issues for which people end up as an inpatient. Obviously there are people with mental health issues who do present in this manner. But there are also people who don’t, and I don’t think that message has been successfully received by those taking this unit.

It’s incredibly frustrating for me. I want an end to the beliefs of “us and them.” I want an end to the misconception that those with mental health issues cannot also be an OT or any other health professional. It almost makes me want to reveal to people my experiences with mental health issues to emphasise that yes, I have mental health issues but I’m not so different from all of them- in fact I blend in well with the rest of my cohort. I’ve had experiences in hospital where the news that I’m an OT student doesn’t receive the most positive reaction from the OTs there. That is what I want not to happen with the OTs of the future.