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?”

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.

Sutures

I’d been experiencing the urge to self harm for a few days, yesterday I ended up giving in. I searched the ward for something I could use, broke a piece of plastic which didn’t really do much. Found a mug, smashed it on the floor and self harmed with that. It’s not what I usually use and did more damage than I’d intended and thought it would. Seeing how much it was gaping panicked me a bit, but once it had stopped bleeding I thought it would be fine. One of the nurses this morning though came up and asked whether I’d cut my leg as someone had seen. I admitted that I had the previous day, and she took the broken fragments of the mug out of my room.

The doctor had a look at the wound and told me they’d stitch it up. “Does it…need stitches?” I asked, not keen on the idea, never having had them before. I was told yes because of how it’s gaping open and reluctantly I agreed. Ended up requiring six stitches, and though the actual suturing didn’t hurt, getting the local anaesthetic injected did.

Despite self harming for about 10 years now I am actually really quite a wuss when it comes to pain and needles and I’m really squeamish. So it’s embarrassing that it was hard for me to tolerate when the doctor was injecting the site with local anaesthetic and halfway through I had to take a break before continuing. The nurses and doctor were really nice about it which makes me feel guilty- I feel like I don’t deserve it and they must be thinking “If you cut yourself on purpose, why are you being a wuss about getting it stitched?!”

It scares me a bit because when people talk about self harm getting worse and/or accidentally going too far, I’ve always thought “I can control how deep it is so that I don’t have to get stitches, I’ve been doing this for years and it hasn’t gotten worse over the years so it’s fine.” And though having to get sutures partly puts me off self harming again because getting the local anaesthetic was a bitch, a part of me doesn’t care and wants to cut even now.

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.