Charlotte aux Fraises

@IamCarrieagain I think that balls have been dropped. My care-co is coming to visit tomorrow (well, the stand in as mine is off on bereavement leave) and I will broach the matter.

@ocyours How do you feel about that? It sounds like that is what they should have done in the beginning?

So. The carbamazepine is to be stopped completely. Aripiprazole is to be started. ECT is to be paused with a view of moving to maintenance when I am discharged. Clozapine levels to be redone next week. 🤯🤯😳😳

Everyone was gathered in the ward lounge (well, corridor with chairs) for the daily community meeting and someone put the radio on. Next thing you know, there are 15 patients and staff dancing to Pink Pony Club. A lovely moment of silliness and fun.

@IamCarrieagain To post to my baby godson!

@ocyours That would be a nice distraction too

I am passing the time by listening to endless episodes of I’m Sorry I Haven’t a Clue… it is a bit mad (wrong word ?!) not to have any activities at the weekend.

@IamCarrieagain I think I’m going to buy some Christian colouring postcards…

@ocyours Ah. I'm glad you've find something you can manage atm. I hope you have a good afternoon

@IamCarrieagain My problem with the ECT is my memory - I keep losing track of the story!

@ocyours That's good. I'd find Murdle way harder than reading

@IamCarrieagain I’ve been doing Murdle. Want to get some colouring bits. Reading not really happening yet. Ward is cool today for the first time !

@ocyours I hope it keeps you entertained. I went through a number of wordsearches, colouring, Switch, reading (the latter when I was nearing discharge), TV in my room. Hope it isn't too hot on the ward? It was brutal last summer

@nhsswipecard I wasn’t on it long enough to find out !

@ocyours This is not a common side effect, did it help with hallucinations and delusions?

So now the thought is to stop ECT and do a full meds review. Drs have MDT on Monday. I just want to scream « This is my life you’re playing with! I can’t just keep going round and round with this med then that one. I need to live!!!! »

@IamCarrieagain @FolkardSimon The French system is very very far from perfect but it felt like there was more treatment/care rather than just sitting around here…

@ocyours @FolkardSimon I've been in & out of it 2 decades (mostly in)! I've seen it get exponentially worse in some ways but occasionally better in others

@nhsswipecard It did, but my blood pressure kept dropping and I would faint in inconvenient places !

@ocyours Did aripiprazole help at all?

@IamCarrieagain @FolkardSimon I have been in the UK system for three years now and there are things that surprise me - such as only seeing dr once a week…

@ocyours @FolkardSimon Yeah, ward rounds are horrid these days given all the people sitting in on them. It didn't used to be a full room of people back in the day. Suppose it is them trying to be more efficient or on the same page

@FolkardSimon @IamCarrieagain She’s offered to take me for a coffee next week…

@ocyours @IamCarrieagain Ok not great from the care-co, but i do not know them, so that could be unfair. It's just handy having someone, Mind the charity used to be brilliant, they're pretty much pointless now.

@FolkardSimon @IamCarrieagain My care-co has attended 1/3 ward rounds so far. At the last one my family member couldn’t come so it was me, 3 drs and a nurse doing the note taking…

@ocyours @IamCarrieagain It's really bad, i do hope they get their act together Charlotte. Do you have an advocate at the hospital ?

@DocEmUK They feel my « symptoms » (they all call it psychosis but it feels pretty bloody real to me) are due to low cloz and that by lowering/stopping carbamazepine, the cloz will start working again without need for ECT…

@ocyours I sympathise. Do they have to stop ECT too? Good response previously is a good sign.

@IamCarrieagain @FolkardSimon I am hoping they will be involved with the MDT on Monday…

@FolkardSimon @ocyours Yeah, the pharmacist for the ward was involved with me last summer due to restrictions on what I could have antipsychotic wise due to previous side effects. They were part of the ward round

@nhsswipecard I have been on aripiprazole and quetiapine in the past. I’m currently on clozapine, levomepromazine, lithium and the dreaded carbamazepine. I agree it is time for a review but it’s the length of time it all takes. I want my life back.

@ocyours Did you try Latuda, aripiprazole , quetiapine ?

@IamCarrieagain @FolkardSimon I had to do hundreds of bloods, cognitive tests, physical exam, ECG… but nobody thought about checking my clozapine levels.

@ocyours @FolkardSimon I would have thought there would be some kind of protocol or flow chart they have to follow & checking levels would be right up there. I'm sorry, it's really poor of them. I know how hard it is to keep having to work back up to living and work etc when at rock bottom again x

@IamCarrieagain @FolkardSimon Yes, I agree. My care co didn’t turn up so I couldn’t bring it up. Clozapine at 0.1… so so fed up with medics forgetting that this is MY LIFE not just numbers on paper.

@ocyours @FolkardSimon They should have checked your clozapine levels prior to deciding on a course of ECT as this might have been avoided if they checked due to the meds interaction from the carbamazapine they added. Could have adjusted that first. I'm sorry, they have dropped the ball here

@FolkardSimon I have treatment resistant schizoaffective disorder. Earlier this year I did a series of 12 ECT and it was life changing. I became « unwell » a couple of months ago with what they are calling psychosis (see earlier post about meds) and have done 5 ECT but they wanr meds review…

@ocyours May i ask how long you have been suffering, is it severe depression ?