What next?!

I saw my new psychiatrist yesterday. To say we were underwhelmed would be an overstatement. DH described it perfectly when he said how we were immediately put on the defensive. So this post is a space for me to vent, but also to actually try and muddle through my head what I have to do going forward to take control of my own health again.

There was a really noticeable language barrier for starters. Which if she had read my file should have been apparent and is one reason DH always comes to all my appointments. Except it has never been an issue till now as all doctors are supposed to be fluent in English. And if she didn’t feel confident or want to communicate in English she should have given my case to another psychiatrist.

If she had also read my file as she claimed she had she would have known we were back to stay and had no intention of moving again. But why DH had to tell her three times in the session we don’t know.

Also if she had read my file she would know I have Bipolar 1 with very well documented periods of mania and subsequent depression, so I was left very confused as to the references to Bipolar 2 in the conversation.

If she was really listening to me as a patient she would have heard that I clearly stated I do not have nightmares as a result of the childhood sexual abuse or any other traumatic effect that has happened. I have the odd nightmare same as anyone else but I don’t struggle with them. So why she then listed them as something I was having I fail to understand.

I have insomnia at the moment because I have no stability at home and I fucking hate sleeping on my parent in law’s floor. Funny that. I’m anxious about moving back to our old flat, much though I love it, because our neighbours are so awful and I’m dreading the loud parties with drugs and booze till 3am upstairs where the noise invades my safe place and the police and council did nothing in four years. But we are taking steps to change that and it is better than the 4 of us camping out in someone else’s house. So that’s why I have insomnia.

I have paranoia for sure. I was at a point last week where I wasn’t going to take my lithium any more as I thought the nebulous ‘they’ in my head were trying to alter me in some way.  I can’t deal with loud noises and I look suspiciously at anyone in the street. Literally anyone. I really hate having to leave the house but I have to do it otherwise my poor daughter would never know what other people looked like. I only feel safe when with DH. So this new professional being really quite confrontational was very hard for me to process.

And then the medicine talk. This is the first time a Dutch psychiatrist has just bandied around taking drugs like the were Smarties. I have anxiety through the roof most days but it has been so much better since returning. Quetiapine was prescribed to me in Scotland to take on an as necessary basis. We also reduced my lithium down which had been increased during my pregnancy. We knew I function much better with a lower lithium count and the side effects of too much lithium really push my anxiety beyond coping, not to mention making me very ill. Once I reduced my lithium I was much better with the anxiety. I do not respond well to Quetiapine – in fact I hated it. It turned me into a zombie. Even 12.5mg meant I couldn’t get out of bed the next day. Forget disassociation, of which I am a master manipulator of, this stuff shut me off completely from the world. I couldn’t take it unless I knew DH would be home to look after the baby ad I simply could not function and it actually made me worse in terms of managing the guilt around my child. And, it wasn’t even prescribed for PSTD.

Again, all in my file.

So why was I being pushed to not take Quetiapine regularly, but actually increase the dosage? I couldn’t give a shit if it took a few weeks to get over the side effects, I don’t have a few weeks to walk around like a space cadet. I’m a stay at home mother and I’d be unable to look after my child so who is going to do it for me?

Also, with my lithium usage over several years now, why again would you push for me to increase the dose knowing that it makes me sick and increases my anxiety? If you had read my file, psychiatrist lady, you would know that it is a known issue for me dealt with very ably by one of your colleagues who has sadly now left. More’s the pity. We also know how successfully I respond to lithium, never demonstrated better than when I was pregnant and had no idea what a black spot I was in until my lithium count showed as almost nothing due to the increasing volumes of fluid in me. And I was immediately better when we increased it. So yes, funnily enough I am very aware of how much it impacts and if I thought it would help I would increase it. So how about you listen to me as I’ve been doing this for years rather than assume you know better?

DH thank God just took over at that point in Dutch and said not happening. I was almost shell-shocked at being run so roughshod over.

The final, and perhaps most significant, blow I received in my appointment was to be told that my diagnosis was perhaps not correct. She had read my file and felt that there was Post Traumatic Stress Disorder (PSTD) present but as yet undiagnosed. Now, the way this came across in English was it’s not Bipolar, it’s not BPD but more PTSD.

So my immediate reaction was what the fuck I was just coming to terms with Bipolar what the hell, does that mean I have something completely different? I was so totally confused and also angry given I hadn’t had the chance to talk properly during the session and this bombshell was delivered on just reading rather than talking to me as a person.

When I said bipolar ran in my family she then responded ‘oh well lots of psychiatrists would just say oh it’s bipolar without looking into your history properly’ and DH responded that we had received the diagnosis by her colleagues in the very same centre. To which she looked rather confused about.

So did you really read my file, lady? Did you see the bit by the psychological unit I was assessed by on the floor above us saying it was most definitely bipolar and I had traits of BPD, but bipolar was the root cause? Feel free to slag off your colleagues as much as you like but I can assure you a year’s worth of assessment and multiple meetings reached their diagnosis which was then further reinforced by psychiatrists at one of the best teaching hospitals in Europe during my pregnancy. Yet, on the strength of ten minutes of meeting me, and apparently reading my file which you must have done two minutes before the appointment started, you have decided the collective wisdom of all these others is wrong and you are right. To the point of being pretty rude about them in front of me.

Apparently I do still have bipolar and I do have the BPD stuff. In Dutch it all came out rather differently, or so DH explained to me. Because I don’t think I could survive having to go through a whole reassessment again, I really don’t. I’m struggling to find out who I am as it is and I can’t face the thought of having to start all over again.

And thank goodness I had an appointment with my lovely psychologist right afterwards who explained it properly. That she had always suspected that I had PTSD as well as everything else, but that PTSD alone didn’t explain the levels of psychosis and mania or my reactions so it was now a matter of looking at a combination of things. If it was just PTSD they could treat me one way. If it was just bipolar they could treat me another way. But because of the combination they had to look at the whole and how to approach it going forward now I wasn’t pregnant and full of hormones.

At least I think I have that right.

I’m not denying the PTSD potential. Far from it. What I reacted so strongly to was the word ‘misdiagnosed’ and the subsequent rubbishing of all the previous advice and rejection of how I wanted to manage my condition, which is not to blindly take a drug when I know the side effects it has on me. Again, I am not anti drugs at all but the patient has to be in control of what they are putting in their bodies and the physician has to listen and respect what the patient is saying when discussing the impact of medication. If it doesn’t work then an alternative path needs to be found.

I have always had good and informed dialogue with my psychiatrists previously so this was the first time I came up such a huge brick wall. And one who was just prepared to chuck drugs at the problem without any meaningful discussion. I mean really, give me one good reason why I should put myself and my family through that for a condition that I haven’t even been diagnosed with yet with a drug that has only had a negative impact on me thus far.

Urgh so next steps are for DH to speak to my also very lovely case worker and tell him we want to see someone else. I have to have confidence in who I see or it will make it worse. In the meantime I have my Promethazine back which works when I have insomnia so I’m very pleased about that.

Long term I have to try and get my head around this other hurdle. The one good thing was that I was told I should not work as it is too stressful with will now help with my benefits pathway.

For me too there are whole new areas to think of for research and blogging – the importance of an advocate for the patient, medication and caring for small children, and patient voice. I know they are all huge, recurring issues in the mental health world. I am so lucky to have DH by my side and be my voice when I feel too scared, ill or intimidated. But not everyone has that.

I feel a bit overwhelmed still by the pronouncement so I will take a step back again to process stuff. Perhaps, to end on a positive, it is one step closer in my search for that elusive peace I so crave. I hope so.

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