** Warning to anyone who self-harms: this article contains potential triggers. **
Amy is our daughter. She is 24. She is bright, intelligent, funny, caring and people seem to like her, although in her teens she was badly bullied at school. We, her parents, realised that she was enduring some "stick", but bright kids often get some of that. We didn't realise back then just how bad it was. Or maybe we didn't listen carefully enough; I don't know. Anyway, it is how it is.
In June 2002 , when Amy was 14, we learned she was cutting herself. We didn't understand why, and we didn't know what to do. We sought help from our GP, who referred Amy for counselling at the Youth Information Service. During this time Amy was still cutting.
A year later, in June 2003, Amy took 12 paracetamol (6g) one day at school [I learned only today that this was the fourth overdose in as many days, although the others were of a smaller dose]. She didn't tell anyone until she got home, but eventually told her mum (I was away from home on a contract at the time) who took her to A&E. After a few hours waiting for results of blood tests she was sent home, without requiring treatment, although she was referred to a child and adolescent psychiatrist, who diagnosed depression and prescribed Fluoxetine (aka Prozac). This was replaced soon after with Reboxetine following scare stories about suicide among under-18's on the drug.
For a while Amy didn't self harm, although she began losing weight and we began to wonder if she might be anorexic. After two years she was skeletally thin, and would eat only specific food (I used to grumble incessantly about the number of times we had poached salmon for tea, and the seemingly interminable salads). You might ask yourself how responsible parents could allow this to continue; why we didn't force-feed her steak and chips, sausages and mash, chocolate and crisps. The truth is, at every stage in the journey of the last ten years, we have had no idea what to do for the best, and nobody we asked was able to advise us beyond "just keep loving her." And we did, and do. We always will.
January 2007 and Amy was prescribed Citalopram 20mg/day, gradually increasing to the maximum permitted dose of 60mg a day over about a 12 month period. Seeming to be a little more stable, Amy began studying philosophy at Reading University but after a few months returned home, intending to restart her course the next year (Reading Uni were very understanding, and said there would be no problem with this). In the few months she had been away, Amy had put on a lot of weight. The night she phoned home to ask us to come and bring her home, she sobbed into the phone, "Oh, Dad, I'm so disgusting. My BMI is xyz!" I don't remember what "xyz" was, and even if I did it would mean nothing to me. I'm a bloke - we don't do BMI. But she had put on weight; I saw this as a good thing. When she left she'd have blown away in a light breeze.
In February 2008 Citalopram was replaced by Fluoxetine. She returned to University that September, but was never very settled. In June 2009 she was detained by the police, having been deemed by them to be a danger to herself in a public place. Shortly after she was prescribed Venlafaxine, also Propranolol 40mg 3 times a day.
In July 2009 she took an overdose of around 70 paracetamol (35g). This required treatment and a few days stay in hospital. She was prescribed Quetiapine that August. We moved back to Cumbria from Newport Pagnell that month. Moving house is supposed to be the most stressful thing you'll ever do. Think again. Not knowing whether the next time you kiss your daughter goodnight is the last time you'll see her alive trumps moving house, hands down. But doing both at the same time, when your buyer is an arse and seems to be doing everything in his power to delay things at a time when you really need it to be finished with so you can concentrate on helping your daughter without continual distractions ? well, that can be a bit of a downer.
In Autumn 2009 Amy was diagnosed as having Borderline Personality Disorder (BPD). We were told that the "Gold Standard" for treating BPD was attendance at a Therapeutic Community (TC), but that waiting lists were very long (two to three years was mentioned at one point).
January 2010, another paracetamol overdose (80 this time), and another hospital stay; then again in March (100 paras). Prescribed Depakote in April 2010 (this rose, eventually, to 500mg 4 times a day). Two more overdoses of 80 and 100 paracetamol close together in August let to an admission to an Acute psychiatric unit for a couple of weeks or so. Once again, she put her University course on hold, and returned home to live with us in Cumbria.
Depakote was making Amy's hair fall out, so it was replaced by Sertraline 50mg/day (increasing to 200mg/day over the next two years) and Flupentixol 0.5mg twice a day (increasing to 1mg twice a day in step with Sertraline).
Finally, in March 2010, Amy was referred to a Therapeutic Community in Aspatria. Apparently this particular TC is the first to adopt what is now known as the Cumbria Model: Service users meet two days a week (traditional TC's meet five days a week) but also use an internet message board to keep in contact the rest of the time. Amy joined the community in February 2011, but by March was back in hospital after another overdose - 100 Propranolol, and her first admission to an ICU.
She moved out and rented a flat a mile or so away from our house in September 2011. Later that month she took another overdose; a cocktail of Propranolol, Sertraline, Ibuprofen and Flupentixol.
When I showed this to Amy to review, she corrected several points of fact, one of which was the details of this overdose - I had originally written that I thought it was Propranolol. Each time it happened we thought it would be ingrained on our memories for ever, but it doesn't seem to work that way. Somehow you seem to forget the precise details. Maybe that's a good thing. In any case, that overdose led to an overnight stay in a Psychiatric unit, under section 5.4.
In October 2011 she was prescribed Diazepam, 5mg twice a day.
By now she's also taking Buccastem, Omeprazole and Domperidone to counteract the nausea and vomiting caused by the other meds: Flupentixol 2mg/day, Sertraline 200mg/day (I think this is the maximum dose), Propranolol 120mg/day and Diazepam 10mg/day. Aside: the NICE guidelines expressly advise against drug therapy for BPD, but that's a rant for a different blog.
2nd January 2012 some time after midnight: we were still in wind-down mode after a pleasant New Year and I'd had a few beers. Probably shouldn't have had since it was a School Night, but hey; **** happens. The phone rang - it was Amy. She'd called an ambulance after taking a mixture of Propranolol and Paracetamol but she had been advised that it wouldn't arrive for a couple of hours. Would I go and keep her company until it arrived? Of course I went.
The ambulance arrived ten minutes after I did. What to do? Should I go in the ambulance with her, sit all night waiting for her to either be declared out of danger, or fatally poisoned: then the wait for days or weeks until her liver finally packed up? Would that be pandering to some need that was satisfied by taking overdoses? Would it reinforce the suicidal behaviour? Amy had told me that part of the overdose thing was a need to be "looked after" so perhaps going along would be a bad thing. Plus I'd been drinking - how would that look in A&E? Or should I return home and try to sleep, in the hope I might be of more use in the morning. God forgive me, I chose the latter, and went home, although I didn't sleep. Nobody did.
Two more more overdoses (70 Propranolol then 100 Diazepam) in the second week of April. After the second overdose, when the hospital Crisis Team saw Amy, I made sure I was there, and managed to get an invitation to join the meeting with Amy for the last few minutes. "We're wondering how best to proceed with Amy's care," one of the two said. "What are the options?" I asked. "Care in the community," was the reply. So I took her home, with strict instructions to make sure she was watched constantly and kept away from sharp objects and particularly any medicines.
On the Thursday of that week, in the evening, Amy sat hugging herself on the sofa, obviously unwell, going through some internal hell, telling us that we should let her go home. "I'm an adult, you can't keep me here." "No, I can't, not legally. But you aren't going home tonight." I can't even begin to describe the emotional turmoil we felt; how wrong it felt to be treating our grown-up daughter like a child. The only thing that made it bearable was that, this time at least, we knew we were doing the right thing.
After a week of this we were exhausted, and so were probably too willing to allow her to convince us that she was over the worst, and that "TC say I should try to regain my independence as soon as possible." (It turned out that this was untrue; TC hadn't said anything of the sort.) Even knowing there was a risk, we allowed her to return to her flat. Around 2am the hospital phoned to tell us Amy had been admitted to A&E after another overdose (100 paracetamol). This led to a three week stay in an acute unit in Carlisle, approximately 90 miles from home. There is a serious shortage of psychiatric beds Cumbria, I believe it's very similar elsewhere too. We visited as often as we could, but at ?30 a time in fuel (damn those "green" taxes), plus subsistence, the costs soon mount up. Not counting the time lost from work, which you can never really make up.
In June of this year Amy told us she had been feeling suicidal for several days, and please could we get her admitted somewhere for her own safety. Strange as it might seem, this was worthy of rejoicing; that she had spoken up rather than acting on the self-destructive impulse was a massive improvement. At Amy's request I accompanied her to see her GP. He told us he would phone ahead to the nearest hospital, and that we should go to A&E to see Crisis Team. Amy was convinced she'd be fobbed off: "They won't believe me. I have to actually take an overdose before anyone will take me seriously." I reassured her as best I could, but I have to admit my experience over the years didn't fill me with a great deal of hope. Still, we went.
When we eventually spoke to the lady on Crisis that evening, she was very sympathetic, but also realistic. There were no beds available in Cumbria. If we insisted, she might be able to find somewhere in Manchester or Lancaster, or failing that they would find a bed somewhere, but it might even be in London. Alternatively, leave it with her and she'd try her best to find somewhere in Cumbria the next day.
On the way home, Amy was still convinced that she would be fobbed off. They wouldn't really find a bed; that's just BS to get us to go away. I did my best to reassure her, but she was inconsolable. She "knew" she'd have to take another overdose before anyone would take any notice.
I'm happy to report she was wrong. It took until 5pm the next day, but a bed was found in Yewdale Ward at West Cumberland Hospital in Whitehaven. Amy was admitted that evening, although it was hard to leave her in that place, with all those "loonies". Amy isn't a loony; she's our daughter; she's just got BPD. None of this is fair; she doesn't deserve any of this. These aren't very charitable thoughts, but you think them all the same. Or at least, I did.
Apparently, it's routine on Yewdale ward to wire the patients up to an ECG. When they did that with Amy, they were worried. Her heart seemed to be erratic. Her blood pressure was very low, and she was also reporting dizzy spells. The consultant at the unit suspected that the high-dose of Propranolol might be the cause, and was concerned enough to request that she be taken of that medication, and also admitted to a cardiology ward for observation. In the event, that wasn't done, but they stopped the Propranolol.
The next time I saw Amy, the next day, she was shaking uncontrollably. Overwhelmed by anxiety, fear, call it what you will. It broke my heart to see her in that state. Amy; our Amy; that bright, witty, caring person reduced to this quivering shell.
In the end, Amy was in that unit for a little over three weeks. About half way through her time there, two things happened.
First, Amy decided to get well. I know that sounds lame, but it's the only way I can describe it. As part of the process, she sat down and wrote a list of things she was going to do to get better. I won't (can't) reproduce that list here, but suffice it to say it consisted mostly of things that you and I probably take for granted but which, to Amy, were enormous challenges at that time.
Second, she decided that she wanted to get off the remainder of her meds. I don't know why she decided this and I'm not sure Amy does either; but she told the staff at the unit and they listened and were sympathetic. I attended Amy's next review, and they agreed to stop the flupentixol straight away, put the Diazepam on "only when really needed" (which meant Amy could have it whenever she felt it would help, but it wasn't given routinely). They felt that Sertraline was sufficiently addictive, particularly on the dose Amy was taking, that it would be better to reduce that over time once she was discharged from hospital. The anti-sickness meds could be reduced as and when they weren't needed (IOW, when she was off the other meds that were making her feel sick).
By the time Amy was discharged, it was clear that she was much improved. Of course, we are always cautious. We wanted to be optimistic, but the spectre of the past still casts it's shadow over us. Is that i? Is it over? Or is this a brief remission, to be followed by a more intense form of hell? Will it all come crashing down in a few days or weeks? My crystal ball seems to be on the blink at the moment, so all I can do is hope for the best.
One of the things that has kept me going through the past ten years is my natural optimism. I refused to permit myself to lose hope. Even in the darkest times, when it seemed there would be no end to it, I refused to allow myself to believe anything other than "Amy can get better. She can get well. She will get well. There really is hope." And I'm optimistic still.
It took several weeks, but Amy is off the Sertraline now. That was the final drug to go. And as far as it's possible to tell, she is well. As well as you or I, anyway. Maybe that's not saying very much: Hey ho; it's been a long ten years.
She is experiencing some withdrawal (she finally stopped taking 50mg Sertraline a few days ago after tailing off from 200mg for several weeks; it can take some time for the effects to "kick out") but other than that, she seems fine. And it's wonderful to have the old Amy back; the bright, intelligent, witty, caring, likeable Amy that we knew ten years ago.
The last ten years have been a hiatus in all our lives. Until you have a loved-one going through something like this you can't really imagine or understand what it's like; and I freely admit I can't understand what it was like for Amy all these years. But, God willing, it seems to be over now.
Derek
Source: http://www.ecademy.com/node.php?id=180360
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