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.

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?”

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.

Outpatient ED treatment

I’m always relieved and a bit surprised when I eat adequate amounts of food and I don’t gain a load of weight. In hospital when I began refeeding, I gained 4 kg in a week. Even the nurse was surprised at how much weight I gained in such a short time- “How is that even possible? You must really want to get out of here,” she said. And because it’s happened before, there’s a part of me that’s afraid that’s going to happen every time I start eating more. But it hasn’t.

These past three days I’ve been eating well and my weight has remained at what I think is possibly my body’s set point. On Friday when I saw my psychologist we talked about weight and the fact that while I’ve managed to maintain the weight I was discharged from hospital with, I’ve also been controlling it so that it hasn’t gone above that number. Technically my current BMI is just under the “healthy weight range,” but I am naturally petite anyway. I said that I may be okay with it if I gained a couple of kilos from eating what a person is supposed to eat in a day- regular meals and snacks that are balanced and nutritious. What I can’t justify is gaining weight for the sake of gaining weight or if I gain weight from overeating, eating lots of unhealthy foods and/or bingeing and purging. My psychologist is fine with that, which makes me so glad I’m getting outpatient treatment for my eating disorder instead of inpatient treatment. Instead of inflexible and ridiculous rules being imposed on me, I get to have a say in my own treatment and recovery. Which means for me eating regular and balanced meals and snacks throughout the day, and if I gain weight that’s okay, but if I don’t gain weight that’s okay too. What recovery and good treatment doesn’t mean to me is being forced to eat to the point of almost vomiting, and being forced to gain a certain amount of weight and punished if I don’t.

Though being in hospital was such an awful experience, it’s almost a good thing it was so bad, because it serves as an additional motivator to be well and stay out.

Assessment appointment for ED treatment

I received a call today from the CCI, which is the only public service in the state that offers an outpatient eating disorders program. I was offered an assessment appointment which I accepted, and it’s been scheduled for next Friday. There’s a part of me though that has doubts about whether obtaining treatment is the right decision or not. As I’m now weight restored after being in hospital, I feel as though I don’t need or deserve treatment for anorexia. After all, I’m not underweight any more so not only do I not look like I have anorexia, I don’t even fit the criteria for a diagnosis any more. Although I know it wouldn’t be a good decision, I’m tempted to lose weight before next Friday because I fear I’m going to go and be told that I don’t really have an eating disorder and don’t need help, after all, I’m not underweight.

I also had a visit from A, the Community Mental Health Nurse this morning. She asked about me appearing on the media about my experiences of ED treatment in hospital, which made for an interesting conversation. She mentioned she didn’t actually see the segment when it aired on TV, but was told by other staff about it. “Which staff?” I asked her, curious to know. “Oh I couldn’t remember names,” she replied. I told her a friend was advocating for better ED treatment in the eastern states, she asked me whether I was interested in talking about my experiences so I did. A asked me what I wanted to see so I told her- a dedicated inpatient ED program like they have in the children’s hospital, for hospital to also address long term recovery and psychological aspects instead of simply force feeding, and for there to be a step down, like a day program, so that people aren’t just going straight from hospital to home with no support.

At the goal weight

I’m at the goal weight that was agreed on- 43kg. Originally they wanted me at 46kg, thankfully they’ve lowered it to a weight that is both healthy for me and a number I’m more able to cope with. They want me to maintain the weight for a few days before discharge. Technically I’m now “voluntary” as the Form 6 of the Mental Health Act I was under expired. However when I said I wanted to leave, I was told I wouldn’t be allowed to do so, and that I’d just be formed again if I did. Doesn’t sound very “voluntary” to me. I realised though it’d be better for me to play the game and comply for a week rather than run the risk of being put on a Community Treatment Order when I’m discharged, which could last for up to six months. It’s what I continue to try to tell myself- play the game, not long to go now so don’t screw it up for yourself.

Saw the psych registrar today who told me if I dropped the weight again they may bring me back into hospital which could result in a longer stay and they’ll increase the goal weight even more. Next sentence he’s telling me they want me to continue to see the doctors and the dietitian as an outpatient. I almost laughed and asked him why I’d attend outpatient appointments if it ran the risk of being forced back into hospital? At this stage I’m not sure whether I’ll maintain or lose weight when I go home, but I sure as hell am not coming back here to obtain treatment for anorexia. It makes me so angry to think about the punitive way I was treated here. Taking away my control, insisting on putting in a nasogastric tube without even giving me a chance to eat, taking away my dignity by not even allowing me to walk 3m without a wheelchair, not allowing me any of my clothes and belongings and not even my glasses, being so rigid to the point of ridiculousness in following the “management plan”, confining me to a room on “bed rest”, focusing entirely on weight gain with daily weigh ins, forbidding my friend from being put on the same ward as me even though her doctors were fine with it, taking away the one thing that may lift my mood and take away from being so miserable. I’m not opposed to treatment entirely, just treatment here after this awful experience. On principle I don’t plan on attending any future outpatient appointments here. As for treatment in general, I’m feeling so tired of it all and at the moment it seems futile. I’d seen a clinical psychologist three times during the past couple of weeks, last session however my defences were up, I didn’t talk and told her it was pointless. I’m sick of starting over and over again with countless psychologists and I feel like nothing will work anyway.

I’ve been feeling hopeless about everything and anxious about the future. One of the nurses was saying she’s excited to plan for the future, which I’m envious of, and wish I was too. Instead it just seems bleak with nothing to look forward to and I’m too afraid to think ahead as the future just scares me. When I’m restricting and losing weight it takes away from my emotions and my feelings and now that I don’t have that, the sadness and hopelessness and anxiety is intensified. When I’m eating disordered I can pretend that food and weight are the problems and can delude myself into thinking that if that is solved, everything will be fine. On the surface that’s easy to cure, eat and gain weight and life will be fine and dandy. The reality however is much different- I may be eating and a healthy weight but then I have everything else- the feelings of being alone, hopelessness, feeling I can’t cope with life as well as everyone else, and desperately wanting a way out. That’s much much harder to fix and I can’t even pretend I have a solution to it because for this I really, really don’t.

Struggling with being over 40kg

Since the last post I’ve been transferred from the open ward to the locked ward, then moved back to the open ward where I’ve been for a few days now.

On Monday I was reviewed by the dietitian. I was told my weight had stagnated as it had hovered at 39.2kg for a few days ever since I’d come on to the open ward which was attributed to me “walking around” even though the most walking I was doing was 5m from my room to the lounge room. It’s a ridiculous distance to have to be wheeled in a wheelchair when I can walk, and honestly, walking that short a distance is not going to affect my weight in the slightest. She again reinforced the restrictions of being wheeled around in a wheelchair and having meals in my room as opposed to the dining room with everyone else. I was upset after this review, as I felt I was being blamed for my weight stabilising, and despite me eating most if not all of my three meals and drinking all three Ensures a day, I was still being so restricted. I was already upset, and it was made worse when two nurses came in and started going through my belongings. I can’t stand having my privacy invaded and on two previous occasions when I’ve had my room searched, I’ve ended up restrained and put in the seclusion room. I tried not to completely lose my shit again this time. I took the blade I had in my bag and held it in my hand to try and calm myself down with the knowledge that it was there just in case. Unfortunately the nurse who was specialling me cottoned on after a while that something was up, and came to investigate. She had a glimpse of the blade, which I quickly took in my hand. She tried to get it off me, I wouldn’t let it go, and other nurses were then called and the duress alarm pulled. I was restrained and taken to the seclusion room where the security guards prised the blade out of my hand, I had all my clothes, glasses and jewellery taken off me, and was given an IM injection. After a period spent in the seclusion room I was wheeled out of the open ward where I found myself once again in the locked ward.

The first few days there I wasn’t allowed any of my personal possessions, not even my glasses, as apparently it would pose “too much risk.” On the second night there I got very frustrated at the situation, took myself into a bathroom stall and started hitting out and punching the wall. The nurses heard me banging around, led me out and into my room where I pushed over a chair in anger. I was then escorted to the seclusion room, where I was made to lay down and once again given an IM injection.

Whereas on the open ward they’re a bit more relaxed, the staff on the locked ward were very rigid in following the management plan down to the letter. I was told I couldn’t have honey with my weetbix at breakfast because it’s “not on my management plan”. There was a plum on my dinner tray and I don’t like plums so asked for an apple instead and was told no. And though the point is for me to gain weight, when I asked if I could have a tub of yoghurt or an ice cream, I was also told no. Out of spite I then ate exactly what it said on my meal plan, nothing more, went everywhere in a wheelchair and drank only a minimal amount of water to prove that it wasn’t being in the open ward that was making my weight stagnate and by not allowing me extra food, I wouldn’t gain weight. I did end up dropping 0.2kg and was 39.0kg on Friday morning.

Thankfully on Friday afternoon I was transferred back to the open ward and have been here ever since. Still on a 1:1 special which means it’s been three weeks that I’ve been continuously watched by a nurse. The dietitian added even more to my meal plan which means daily I’m having three full meals, three snacks and 200ml of Ensure Plus three times a day. Eating six times a day feels excessive and surely normal people do not eat this much.

Up until now I’ve been eating and gaining weight quite easily without it being much of a struggle, but these past couple of days I’ve been feeling awful as my weight is now over 40kg. Being under 40kg felt safe, and now that I’m over that number, I feel like I’m fat enough and any more weight gain is unnecessary. Clothes that used to be loose on me now feel tight, and I feel like I need to punish myself by self harming for being such a fat, disgusting pig. But of course I can’t, and I just feel low and I can’t cope with them wanting to be 46kg which would be a BMI of 18.5. I’ve never been that heavy in my life and at that weight I’d either just restrict again to lose it or kill myself. I could go home and eat without trying to restrict at about 40kg, but 46kg? There’s no way I could deal with that and that’s just setting me up to starve and lose weight all over again.

Back in hospital

So I’m back in hospital and have been since 17 December. It seems like everyone saw it coming; my mum, my aunt, my friends, the nurses, even readers of my blog. Everyone except me that is. Huh. Naively I thought if I didn’t have any physical health problems, they wouldn’t form me under the Mental Health Act, and I believed my case manager when she said they wanted to keep me out of hospital. This is a new low for me, one month out before being back in again. Usually I’m able to keep out for at least four months between admissions.

So how did it happen? It started with two of my friends whom were also inpatients last admission voicing their concerns to me. They were concerned I wasn’t eating much and I’d lost weight all over again, and had convinced themselves I was at risk of dropping dead overnight. They asked me to come to the Emergency Department with them, I told them there was no need and that I was fine. After much convincing and my friend saying that she wouldn’t sleep at night worrying about me, and that they couldn’t forgive themselves if they had to attend my funeral, I came with them into the psych triage at A St. I went out of guilt and I was sure whoever I saw would also agree that I’m fine. Spoke to a nurse and a doctor who were happy for me to go home and said they’d talk to L, my community mental health nurse/case manager. The next day I had a visit from my case manager who said that she’d talk to the psych registrar, Dr D, to see if I could get an appointment with her during the week. On Tuesday morning I then got a call from L asking me to come in for an appointment with Dr D that afternoon. I went and drove to my appointment without any inkling whatsoever that I wasn’t going to be able go back home that afternoon. I was told by Dr D they had spoken to the inpatient consultant psychiatrist and that they wanted me to come into hospital. If I didn’t agree, I would be formed under the Mental Health Act. My relatives had to pack my bag for me, come drop it off and drive my car home for me.

The next morning I was reviewed by the doctors and dietitian where I was told I’d be put under a Form 6 under the Mental Health Act, they’d be inserting a nasogastric tube, I’d be put on bed rest, be on a 1:1 nursing special, and whereas last admission they discharged me at a BMI of 16, this time they wanted me at a BMI of 18.5. “What if I eat and or/drink orally?” I asked, desperate to avoid an NG tube. They replied that it’s “Not negotiable.” Obviously I was upset at all I was told, and after the review I tried to abscond from the ward. Unfortunately it was my poorest effort yet, and I didn’t get very far before a nurse and a doctor caught up to me, grabbed me by the arms and forcibly escorted me to the seclusion room of the PICU/locked ward.

It’s there I stayed for six long days. I refused to let them put the NG tube in so I was restrained and injected with midazolam so that they could try and force it up through my nose. The events are a little blurry, but I remember a nurse trying twice to get it in, me trying my best to prevent that from happening, and somehow or other I actually got out of it and thus far no NG tube has been put in. A short time after that, my blood pressure apparently dropped quite low, and a code blue was called. I was pretty out of it by then, but remember having an oxygen mask and getting IV fluids put through.

For the first few days on the locked ward I was confined to my room on bed rest. I found that very hard to handle, with nothing to do except read a book or stare at the wall. Being a PICU, everything is taken off you- phone, iPad, electronic equipment, cords, toiletries, anything breakable, jewellery, bag, keys, wallet, and plates and cutlery were all plastic. I self harmed at one point by using my nails to scratch my arm and using my watch to hit my arm- until I was restrained by nurses and security guards on my bed, and had my watch taken off me.

On Monday when the dietitian and then doctors came to see me I was told I would be allowed to be wheeled in a wheelchair to the lounge room to watch TV- but still not allowed to have my meals in the dining room or participate in OT activities. Though those conditions were a tiny bit better, I was upset that I was still so restricted, and not allowed to even walk 5m to get from A to B. In addition to this, because aforementioned friend was also in the locked ward, staff wanted to prevent us from interacting and we were told we weren’t allowed to talk to each other. At one time when we were both in the lounge room, a nurse told me I had to go back to my room, as we were apparently communicating with each other. That’s when I got pissed off and started arguing- we had not said one word to each other that whole time in the lounge room and it felt so unfair that I was the one kicked out when there’s nothing else I can do. There was one night though where the nurses didn’t care that we were talking to each other, and it really helped my mood to be able to chat and have a laugh with her, other patients and nurses. On the locked ward I was so bored and depressed that I didn’t give a shit any more and actually ate, even extra food like ice cream, chocolate and cheese toasties.

I was moved back up to the open ward on Christmas Eve. After being in such a controlled and restricted environment, it is such a relief to be back on an open ward. It’s much more relaxed, I have all my belongings back, I’ve been having my meals in the dining room and have been to the OT groups of cooking and art. On Christmas Day I had a few hours leave with my relatives, as my parents are overseas at the moment. I was seriously contemplating killing myself if I was still in the locked ward and confined to my room, but as I wasn’t and had been moved to the open ward, I was in a good enough mood that I didn’t bring back to the ward things to harm or kill myself with. It was nice getting away from the hospital, being away from being constantly watched and getting to see my dog, even if I did eat then purge while home.

I’m still on constant 1:1 nursing, and this is the longest that I’ve continuously been specialled. The doctor on duty came to see me today, and it happened to be the doctor I was seeing whilst inpatient at another psych ward during October/November 2011. He remembered me, and joked “You’re always needy!” about me being specialled….again.

Unlike last time in hospital, this time I’ve actually been eating and mostly compliant. I’m trying not to think about it, how much I loathe being controlled, being made to gain weight, eat way more than I’m comfortable with and how fat and disgusting I feel. I’ve been told they want me to be 46kg before discharge but there’s no way I’ll be okay with that. I’ve never been 46kg in my life, the most I’ve ever been is about 43kg, and that’s when I was eating normally and hadn’t purged in months. I’m Asian, 158cm with a small body frame and 46kg is too high, none of my clothes will fit at that weight. Right now I don’t even plan to go home and lose weight all over again, I could probably live with maintaining at around 40kg which would be high enough so that I don’t get scheduled under the Mental Health Act, but I’d rather kill myself than be 46kg. If necessary, I believe I do have the means to do so properly. When I came into hospital I was 34.8kg, just 11 days later I was 39.0 kg this morning. I’ve been told they expect a gain of about 1kg a week, and in less than two weeks I’ve already gained 4.2kg. On one hand that gets me out faster. On the other hand it proves to me that this amount of food is way too much for me, I’m always bloated and I’m ballooning with how much I’m eating.