This isn’t going to be the most fascinating post ever, but I need to just bring the blog up to speed – especially as the last two posts may have probably seemed pretty alarming.
I’m OK. Is the bottom line. My mood has been much more steady, albeit slightly high (it’s been hard not to write, write, write all night, night, night and I’ve been a little physically agitated). No thoughts of suicide or absconding or anything horrible or sneaky at all, really.
And I have a pencilled-in date for my discharge: two weeks today.
My CPA meeting (care plan review) was this morning and went as well as I could have hoped. All the points I’ve been making to staff had been taken into consideration: my need to travel around London safely by myself; my total terror (justified or not) at the plan to move wards, something it is agreed can be shelved if I am only here for another couple of weeks; my desire to begin implementing ideas about meds developed with the pharmacist.
It was in that pharmacy 1:1 that I finally realised I wanted quick fixes to my medication problems, but there are none. I’m on a lot of quetiapine and it will take a long time the come off it. I also realised that I was looking to switch to the perfect drug, but there is none. I tried therefore to open my mind exceptionally wide and actually consider all the options, even ones I have previously rejected. And so I’m going to try the one drug I’ve always said an outright “no” to, aripiprozole. I need something that doesn’t elevate prolactin levels – I’ve already had the whole leaky boobs thing when starting/increasing quetiapine which has been demonstrated NOT to elevate prolactin levels, so forget about ones that do. And whatever I take must, must, must be weight neutral. The pharmacist did make a case for olanzapine but as it’s worse than Q for weight gain my answer was, if you’ll pardon the expression, a big fat no.
I’ve heard/read a lot of negative stuff about aripiprozole. Like I said, the idea scared me for a long time but I can’t carry on with drugs that give me physical problems related to metabolism/weight whilst not even controlling symptoms. I have to do something really different. This doesn’t mean I’m not anxious; I know aripiprozole makes many people agitated and I am really worried about that. So we can take it as read I know a lot of people will be thinking that I’ve made a bad choice, but I’d ask that you respect that choice and not bombard me with more scare stories.
But that’s all weeks away. We’re starting today with an immediate reduction of quetiapine. It’ll take weeks to come down to even half dose, at which point the aripiprozole can be slowly commenced so that the two cross taper. I have a lot worries. Will I get withdrawal symptoms as the Q is slowly reduced? Will I be able to sleep? Last time I forgot a dose I was awake for 37 hours without a glimmer of fatigue. Phasing Q out may well may mean phasing in hypnotics or antihistamines in, at least at the beginning. Will I feel physically unwell? Will I totally lose my shit and become psychotic?
So some decisions have been made but now we’re just onto the next layer of complexity and there’s a lot to take on board. As you’ve probably read, when I was first admitted I felt very ambivalent. I was very reluctant to take myself out of the community, out of my life, even though I knew that was what was needed to be safe. For most of the time I’ve dealt with homesickness by pretty much pretending home doesn’t exist, other than a place from which Tom can magic yoga blocks and thicker socks and my spare pair of glasses. Holding ward and world in my head has felt impossible and I have told staff that I don’t think I can handle home leave. I think going home then having to come back would break me.
I’ve been making sure to go out more, trying to bridge the gap, mostly with Tom and once, yesterday, with a staff member. Sometimes being out feels quite normal but I often become overwhelmed. My brain’s just not used to all the visual and audible “chatter” and I find I need quiet time alone afterwards. Today we went for brunch after the CPA meeting but I really struggled when I returned to the ward, aware of the shifting ward/world tensions and that I don’t know how the hold them.
I’m due tomorrow go out again with Tom as I don’t really have many clothes that fit properly, something that will matter more the more I go out, or any money to buy them myself. The idea is we take a little tube trip, two birds, one stone kind of thing.
To be honest, I don’t really want a gradual change from ward to community. I’m already finding the transition stressful. I want to be all in, or all out.
As I have said before, your blog is brave, startling, troubling, beautifully written and always real. it should be required reading for all mental health nurses, psychologists and psychiatrists in training. Because you articulate what it is like to be inside the head of someone who is going through an experience that most of them will never know, and yet they need to understand, because otherwise they make unintentional mistakes which can be devastating. All I can say is wow. And it helped me a great deal to stay in touch with you. Can’t wait to get together when you are up for that. Go you xxx
I hope the med change works out well for you. Sometimes you just have to go a little drastic. And try to keep it in the forefront of your brain, that if anything does go wrong with the transition, you are already in the right place. Stay strong.
You’re so brave and thoughtful about what is the best treatment, as a fellow sufferer of bipolar, we know the effect medication can have both for good and ill, and it’s good that the doctor is listening to your perspective and working with you. I love your blog!
Good luck with the medication change, hopefully it will help you in the long term once you get past the switching between the two phase. Hopefully your trip out with Tom will be good and enjoyable and will allow for you to plan going home in a safe way.
But it is good to see you are getting to a better place than when you first went in to hospital, you can defiantly see the improvement in things from your tweets. Fingers crossed that positive improvement continues for you.
I agree that you are brave and courageous. I have no experience of requiring medication but being able to articulate what you do and don’t want shows how well you understand your condition. Understanding is half the battle, for me anyway.
Your tweets about life on the ward and the time it has taken just to get a treatment plan in place were very revelatory. Definitely something valuable to be published in the media.
I understand what you mean about the outside world. The only time I am able to leave the house without feeling panic is to go to work.
My experiences are very different to yours and I’m probably way off the mark, but I hope you are able to go home soon x
I think that we all feel more or less OK in the outside world in different contexts. For the first few weeks of my stay I couldn’t deal with going out at all. Now I’m able to contextualise that and I’m fine being back at home – but now it feels weird to have to go back to the hospital for Home Treatment Team appointments and that made me really nervous this morning (it was fine!).
I really hope they can do something with your meds that will help you when you come home. I totally get not wanting something that will cause more weight gain and leaky boobs – leaky boobs! What an odd side effect! Keep that chin up, you are awesome and I hope this stay will prove more helpful in the long run. xx
It is difficult to make decisions about meds when no-one can really know how it will affect you; it always feels as if you are in a field trial of one. Good luck and I hope it is positive. Either in that it is good for you, or that you can say you have tried it and it isn’t for you at the moment.
Personally I’m a fan of either all in or all out. When I’m gone I’m gone. Strangely enough I didn’t feel that way when years ago I stayed in a private clinic maybe it’s having to take all my wordly goods each time and how on earth does a person accumulate so much in a short stay!
Here’s hoping the new meds work. You deserve a break for sure
Hospital to home after a period of time in hospital is very frightening as much as you want to go home and be with your creature comforts and in your case with Tom.
Last year when I had the five week admission in respiratory medicine although very different to mental health I had my own vulnerability or are we short of breath and walking very difficult and even making a cup of tea very hard . I was on the ward and in a way I got used to the ward routine and is not as I want to go home I felt safe there as I had my bed in the bay in a good corner and liked many of the patients and nurses and doctors . Impact one junior doctor well she was in junior as such but you know what I mean help me massively by being extremely knowledgeable and on the ball and top of me when she had to be and I appreciated The regime. I had physio as well. It was company for me and my going home to an empty flat after an
extensive period of severe pneumonia was frightening but I also want to get back into my own bed and my routine again. However it was small steps and I’m still working on my recovery and my
New treatment is still in its early stages but as help me tremendously and I’m getting good support from various professionals but I cannot emphasise enough how hard it was In the early stages and how frightening it was. In the early stages and how frightening it was . So I really really understand and what is good is that you have Tom to take you on the recovery journey from hospital to home. Recovery is a contentious word but I mean the transition phase where you’re finding yourself again. I really wish you a huge injection of confidence and thank you for sharing.
The whole thing with the triage ward sounds very difficult. A friend has just finished 3 months on a local acute ward, ( we don’t ahve a triage ward it is just one ward and you stay as long as it takes)and says it would have been much, much worse if you never knew if you were going to be moved, or when you would be moved. of how long you would then be expecting to stay etc etc etc. How does it work at the hospital you are in? How long do people normally stay on the triage ward?
Hi Charlotte. As Lisa has said this is essential reading for HCPs and those training in MH. Your writing is so powerfully vivid and moving. You describe the real challenges you face really well . It is not for anyone to be critical of you and your team’s decision . Your choice of medication is challenging and exciting as well as I guess frightening in some ways ie fear of unknown. However your good safety net is there with Tom, family, friends and your team whom you have a good rapport with. Going home is important but small steps in the process of transition and careful planning is important. It is good that you will have Tom knowing someone you trust is there for you makes a huge difference. My own experiences of going home aftre hospital when I was on the resp med ward for five weeks were hard. I wanted to be home but I was still weak and building up my strength. However with my physio it was a case of working hard within my safe limits and taking one day at a time. It has been hard but I am so much better than when I first came home and I had a new treatment regime to take on that was hard which included a BIPAP machine (like CPAP but more advanced) . The BIPAP has made me feel so much better. I wish you a smooth transition and we are all here for you. xxx
Ah! Now I can see your comment 😀 I have so, so appreciated the support I got from Twitter friends and I loved getting your cards. Sometimes you will well know hospital can be so damn boring! Thank you again and many kisses 😘
This is my first comment (of more than a couple of lines) for nearly a year. I undertook (last time) to make an apology (perhaps for my own benefit largely) if I were to comment again, so here it is. I wrote (after reading your Xmas 2014 essay) that you had made ‘disempowered statements’ or similar. I made this observation with full awareness that it might upset you, but with the hope of benefiting others who might read it. This was a particularly ruthless type of behaviour, for which you get this personal apology.
I also recall advising that you don’t post my comments without reading them through first; my current plan is to spread some comments over your blog from about Feb. 4th, some time before you went into hospital. Obviously I won’t agree with everything you have written, but if I’m going to say anything worthwhile, I can’t guarantee not offending you at all; although I’ll try to be careful without being patronising, and leaving out too much of what I really want to say. (Sorry for waiting until you’re about to be discharged – I’ve long been a procrastinator).
You may wonder why I would want to write again after nearly a year. You have previously mentioned writing as a catharsis; this is my catharsis after watching (twice) the recent Stephen Fry documentary, which I thought could adversely influence vulnerable viewers unaware of its limitations. Incidentally I had somewhat lost interest in your blogs after your decision to decline therapy, but have now realised that you must have had your reasons for that.