Time to Bid Farewell

There have been a few times throughout the years where the privacy and anonymity of this blog has been compromised. Despite this, I’ve kept blogging and this blog is now in its seventh year. This time though….I don’t think I can any more. I was asked by the Head of OT at my university to come to a meeting today, and the Director of Fieldwork and someone from Counselling Services was also present. It was there I was informed that they had found and read this blog and now that they have, there is a duty of care to ensure I am medically fit to do fieldwork. Thus my next fieldwork placement is pending medical clearance from the doctor at the mental health clinic.

I feel so exposed. I have poured so much of me here that I have never shared in person. Yes, I’m the one who chose to blog publicly. It was never intended though for the eyes of those who know me personally, and I can say with certainty that I did not ever anticipate OT staff at my university would read it. I’m stunned and can’t quite believe this is actually happening. I’m horrified and mortified by how much my lecturers now know.

Over the years Behind the Facade has garnered a number of readers and followers and it’s been wonderful to connect with a whole community of mental health bloggers. Unfortunately a downside to the increased traffic is that you never know who may come across your blog, and who may choose to report you. First the hospital I was in a couple of years ago, and now the university. Who knows what’s next, and it’s just become too much of a risk. Though my archives have been made private for now, I may decide to make them public again in the future once I ensure I’ve eliminated all identifying information that could give me away.

So I guess it’s goodbye for now. Which is sad, as this blog has been an outlet for me in my worst times for the past few years. At the same time this blog has dropped in importance to me in relation to the other things I have in my life, and the mental health blogging community isn’t what it once was, so maybe now’s a time as good as ever.

Take care everyone and thank you for being a part of my journey xx

 

The BPD Rollercoaster

When you have BPD, the perpetual mood fluctuations and intensity of emotions can feel like you’re riding on a roller coaster blindfolded. One minute you’re on the rise, then next minute you come crashing down, and you never know which way you’re going to be pulled next. And it’s scary and dangerous, because when you’re in the trough, you come this close to acting on the impulse to do something reckless and self-destructive. Then in the next moment when you seem to be trekking uphill again, you’re momentarily glad you didn’t do anything drastic after all and wonder why you were wanting to do so in the first place. Except for the times when you do, because even when you know that the roller coaster will climb uphill at some point, you don’t think you could bear another steep decline and you’re desperate to get off. Then you feel yourself start to dip, and it all happens all over again.  And it’s frustrating, because you want to go on the carousel or Ferris wheel instead, something a bit more smooth riding, or if you’re going to be on the roller coaster, at least be in control of the car. But you don’t know how, so instead, you’re stuck on a ride that’s a bit too fast for you, with massive mountains and twists and turns. 

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.

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Finished DBT

I was originally meant to be doing the full year of DBT, but due to me passing all my units at uni (yay!) and going on fieldwork next year, I ended up only doing the six months. Which meant I still completed all four modules; mindfulness, interpersonal effectiveness, emotion regulation and distress tolerance, I just won’t be repeating it for the second time round.

I had my last individual DBT therapy session with my psychologist yesterday. When I think about twice when I’ve overdosed/self harmed and ended up in hospital when I had to stop seeing a psychologist, the same when I just thought a psychiatrist was going to stop seeing me, and the rest of the time when I didn’t even properly end with a psychologist, it’s weird not to feel that sense of loss, dread, abandonment and feeling of being ripped apart that I usually feel in ending with a clinician. I guess I just didn’t really feel that sense of connection with her. And it got pretty repetitive and monotonous go go through the same thing every session: diary card, chain analysis, looking at where I could’ve used those DBT skills.

I think I’d feel a much bigger sense of dread and loss when it comes time to be discharged from the mental health clinic and stop seeing my community MH nurse. I was resistant to the idea of seeing a community nurse at the time when I was relapsing with my eating disorder last year, but now that I’ve been seeing her for over a year I’ve come to appreciate being able to just talk to her about whatever’s been going on in my life.

So now that I’ve finished DBT how did I find it? Well perhaps I’m not quite as scathing as I was before starting it. I can see where some of the DBT skills can be helpful when trying to get through a crisis or when trying to deal effectively with other people. At the same time though, I still feel like it doesn’t help me understand myself better on a deeper level and why I feel a certain way then react how I do, and learning the DBT skills doesn’t address if I’m motivated or not to use them in the first place. It’s also quite scary for me that because DBT seems to be regarded as the best damn thing since sliced bread for those who have BPD, now that I’ve completed it, it’s kinda like “Well what now?” So many times when I’ve been in the ED or psych ward, I’ve been told that doing DBT is the solution. Now I’m left wondering “What’s your solution for me now?”

Started DBT

Now that I’ve had both my first individual and group DBT session, I’m still rather apprehensive about it all. During individual therapy while D was giving me more information about the DBT program, as much as I didn’t want them to, tears started rolling down my face. D asked me about the tears, and I told her that I was overwhelmed with fear and anxiety about how full on the program seemed, and that I was thinking that it’s all too hard. I acknowledge that wanting to run away from it because of fear about how hard it is is my problem, but from what I’ve been told by D and the documents I’ve been given, there are certain aspects of the DBT program itself that I have an issue with too. A few of them are;

• I dislike how regimented it is and I find some of the rules and boundaries presumptuous and condescending.
• It seems to run on a system of punishments. For example, the 24 hour rule: If you’ve self harmed, the therapist will not have unscheduled contact with you for 24 hours. I don’t see how your therapist not talking to you because you’ve self harmed can seem anything but punitive. 
• Based on the number of rules there are and contracts I’ve had to sign prior to starting, I feel like I’m being boxed into the assumption that I’m difficult, I cross boundaries, am overly needy and time intensive. I’ve never been someone who’s crossed boundaries in therapy, tried to obtain extra therapy outside of scheduled sessions or been demanding of a therapist, and frankly I’m insulted by documents I’ve received that hint I am. 
• There’s a big emphasis on not missing either group or individual sessions, especially not “just because you don’t feel like coming”.  If you don’t attend a certain number of groups, you’re banned for the rest of the term, and if you miss a certain number of individual therapy sessions, you’re also banned from group for a certain period. Again, I’ve never not turned up or cancelled appointments just because “I didn’t feel like it,” and I’m irritated this point had been reiterated to me even though it’s a non-issue. As for not missing sessions, I try not to, but you know, I have a life. I study occupational therapy at uni, we have fieldwork to attend, and on top of that I volunteer/work in four different mental health groups/organisations. 
• I still get the impression that DBT is all about using skills to stop the self harming and suicidal behaviours without actually addressing the actual issues behind it and the hopelessness, fear of rejection and abandonment, not knowing who you are, past trauma, depression etc.

I have however barely begun this year long program so I can’t say yet whether it is helpful or not. Despite all my objections, I do want to be open to it and give it a go. In group a couple of the members who are now in their eighth month of DBT spoke about how at first they didn’t get it and it seemed stupid, but it then clicked and they do use DBT skills in their everyday life, and another group member who I spoke to before group told me about how DBT has been life changing, and she can now cope with things she wasn’t able to before. So who knows, maybe if I use my wise mind, take a non judgemental stance and act opposite to my emotion by fully engaging with DBT, I will be singing a completely different tune about it this time next year.  

Last psych appt

Yesterday afternoon I was seen by the doctors, and my community nurse/case manager also sat in on the meeting. I was asked whether I wanted to be discharged that day or the next, I chose to be discharged that afternoon. Though I still wasn’t great, I at least felt a little better than when I came in and I guess there wasn’t much point in staying any longer. We also discussed my medication, I still remain on 200mg of Pristiq and 50mg of Seroquel XR but have also commenced on 450mg of lithium as a mood stabiliser. It was either lithium or sodium valproate, but according to the doctor the latter has a greater chance of hair loss, weight gain and sedation occurring as side effects.

Spent this morning in tears as I emailed a uni lecturer about something totally unrelated, and in her reply she again brought up an incident last year which resulted in a general miscounduct and me getting into a whole load of trouble. It feels awful that I continue to have that held against me by a lecturer I will again have this semester despite me completing the disciplinary action that was dealt to me and having damn well learnt my lesson. I then attended the last session with my psychologist at the eating disorders program in which I cried some more both talking about this situation with my uni lecturer, and then saying I felt “A bit sad,” when she asked me how I was feeling about it being the last session. It’s the first time I’ve ever admitted to feeling anything other than indifference towards any psychologist I’ve seen as I’ve always been ashamed of feeling attached to or having any emotional connection to others, especially when it’s not reciprocated. Though it wasn’t easy attending knowing it’s my last appointment, I’m glad I did and handled it much better than I did the last time I had to change psychologists. It’s quite embarrassing when I remember how I spent the second last session crying, refused to come back for another session or to see the psychologist I was being transferred to, overdosed and ended up in hospital thus never having a proper concluding session, then wrote him an angry email about how useless therapy is.

I’m starting DBT next week with the group component running on Tuesdays and my first individual therapy session is on Thursday. I’m really nervous about DBT and how full on and strict it seems. At the end of my assessment sessions for DBT I was given a contract and asked to sign it, with rules such as not being allowed to miss a certain number of group or individual sessions, having to complete the homework, rules around interactions with other clients and your therapist not having contact with you for 24 hours if you’ve self harmed. I also have a lot of ambivalence about whether I really do want to change and to stop self harming or not, and so much fear when I think about doing so. Plus I’m hesitant about starting all over again with yet another psychologist knowing that if I do develop a connection it will feel like another loss when we have to cease therapy, especially after weekly appointments for a year. 

In hospital

I’m in hospital at the moment and feeling such a mix of emotions. There’s a part of me that wants help but doesn’t know how to ask for it, there’s a part of me that just wants to go home and is hoping I’ll be okay, there’s a part of me that’s still considering an overdose and there’s a part of me that just doesn’t know any more.

I’d been struggling lately and thinking of taking an overdose but was waiting until at least after Thursday as I was speaking at a conference and didn’t want to back out on that commitment. Thursday night I felt kinda like “What now,” and called up mental health triage to speak to someone about those thoughts. Luckily the nurse who picked up was a nurse I already knew and who knew me, and is one of the best nurses that I’ve met. It helped a bit, and I was able to go to sleep without doing further harm to myself. Friday I saw my psychologist. She could tell I wasn’t feeling great and I talked to her a bit about what was going on and how I was feeling. Because she was concerned that I might take an overdose, she consulted her supervisor who decided that I should go to the ED. My psychologist accompanied me there and I was assessed by two psych registrars and a psych liaison nurse. It was there that I first experienced what it’s like to have “Borderline Personality Disorder” written somewhere on your file, and for clinicians to have preconceived ideas about you. “People with borderline personality often have thoughts of suicide and self harm,” I was told, and it felt like I was being dismissed as someone who “always had those thoughts” so it’s not serious. I was also told “Maybe it’s because you’ve been discussing the eating disorder with your psychologist and this is the first time you’ve talked about self harm and overdosing and that’s why she got so concerned.” Umm no, I don’t say I’m feeling this way unless I’m actually feeling this way, and it don’t tend to call people up unless I’m pretty desperate. But thanks for that. I was presented with the option of going home or staying for a few days as a voluntary patient, and of course, now that I felt as though I was an attention seeker, I said I wanted to go home.

Saturday night I self harmed by cutting my leg, and at midnight I drove myself to the ED to get stitched up. Thankfully the doctors and nurses who treated me there were all really good and the psych registrar who assessed me acknowledged that I’m not always like this and said that she thought coming into hospital for a short while would be a good idea.

I arrived onto the psych ward Monday afternoon and was seen by the consultant psychiatrist whom I’ve seen for the previous three admissions and the new psych registrar on the team. I talked a bit about what has been going on; finding it difficult with having to stop with my current psychologist to do DBT, the fear of starting DBT and starting with another psychologist and the fear of not being able to cope with uni next semester. He told me I’d probably stay just a few days and be discharged Wednesday or Thursday, however, it’s now Thursday afternoon and I still haven’t seen my doctors since I was admitted Monday afternoon. I did however speak to the med student on the team and opened up a little more about how I didn’t understand them keeping me weeks and weeks when I didn’t want help, yet talk about discharging me after just two days when I do want help. I also spoke about the fear of the stigma surrounding BPD and that I’d be classed as “attention seeking.” I’ve been told the doctors and my community nurse are going to come see me, I guess I just have to wait and see what happens next.

Discharge from outpatient ED program?

Eating wise, things haven’t been going well these past few weeks. My daily diet has been consisting of a protein bar, a bowl of diet yoghurt, a bowl of vegetables, sugarfree jelly and half an apple, and I haven’t been able to bring myself to eat and keep down anything else apart from this group of safe foods. My weight hasn’t dropped by more than 4kg so far, however, as of this morning my BMI was 15.98 which it hadn’t dipped to since being discharged from hospital. Part of me is pleased that I’m losing weight, the other part of me is thinking “Why am I doing this? I just want to recover.” But maybe I’ll feel more comfortable maintaining if it’s between a BMI of 15-16? That way my weight would still be underweight but on the higher end of underweight, it’ll give me ~2kg leeway between being a BMI of 15-16, and I’ll be able avoid being put into hospital under the Mental Health Act.

I’ve been seeing my psychologist at the outpatient ED program weekly. However, because they’re an outpatient service, they have a duty of care and won’t see clients if they’re medically unstable, keep losing weight or are below a BMI of 14. I’ve lost weight three appointments in a row now, and I’ve been warned by my psychologist that she is not allowed to continue seeing me if I continue to do so. I’m meant to at least maintain my weight at my next appointment which will be in a week’s time, whether I do or not remains to be seen.

The day after my appointment I did try. I had a bread roll at breakfast, but then once I started eating I felt like I couldn’t stop, and it led to a binge/purge. And now I’m afraid to try again because I’m afraid I won’t be able to stop eating and it will lead me to binge and purge again, and I’m afraid of the feeling of fullness, and gaining weight.

If I’m discharged from the service, well I guess that’s that. On one hand I know that they can’t have clients declining under their care and you have to be committed to recovery, on the other hand, it sucks that they may discharge clients for struggling. It’s hard to be able to turn things around by yourself, and it’s unfortunate that there’s no day program and/or outpatient meal support to help people to be able to do so.