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So many emails

Anon’s carer here.

Things continue to be the worst they have ever been, although Anon doesn’t seem quite as desperate today.

So many hours over the past week has been spent with Anon crying hysterically, it has been very distressing. I’ve spent the last few days emailing everybody I can think of (Mind and other mental health charirties, CAB) asking for advice and information about various things.

The charity Bipolar UK really helped us last time Anon contacted them, and gave us lots of really useful information. I’m hoping they can help again.

I’ve been looking into advocacy, to support us at appointments. Anon is not in a good place  for appointments, and even I can be intimidated by Doctors and Social Workers, and find it hard to tell them when they are wrong, or not understanding the situation (which happens all the time).

It would be really helpful if we could get an advocate to talk to us beforehand, so they knew what we were going through and what we want, then sit in appointments and help speak up against the Doctors.

I think it might help Anon feel more secure, but I’m not sure if we’d qualify for an advocate or how to get help from one.

Just waiting for about a dozen email responses…

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Hello Doctor, it’s me again…

Tomorrow I’m phoning our GP again…he’s going to be sick of hearing from me.

I’m going to ask if there would be any way he could either be there with us at the appointment for the psychiatrist, or if the psychiatrist could meet us at the GP surgery. Or what about having a video chat with the psychiatrist in the Doctor’s room?

The issues with the appointment with the psychiatrist is going to be:

–> We will get the letter in advance, which means more time for Anon to get stressed and work herself up over it (that seems to be belittling the problem, she won’t just be ‘a bit stressed’, she will be flat out terrified)
–> The appointment will be with a psychiatrist that Anon hasn’t met before and we don’t know anything about them, unlike with the new GP where we fished about for the most gentle and understanding Doctor
–> The appointment will be in an environment where Anon is going to be extremely uncomfortable, either an entirely new place or somewhere with bad associations
–>A GP appointment lasts around ten minutes, whereas a psychiatrist appointment usually lasts at least 45 minutes, and sometimes longer than an hour

I don’t know what is possible, or what they’d be willing to do, to make things easier for Anon…but surely something has to be possible?

Things seem to be going to shit left right and centre at the moment.

As Anon would say, “it never rains but it pours.”

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In which Anon is broken…

Me again. It was the day of Anon’s GP appointment yesterday.

Anon couldn’t think about anything else the entire day, despite the fact the appointment wasn’t until 5.30pm.

Half an hour before the appointment she started feeling increasingly sick, and by the time we were walking to the Doctors she couldn’t breathe easily.

The wait at the Doctors was short, and then our new GP called us through. Anon couldn’t look at him. She let me lead the way and sat on the chair furthest from him, then stared resolutely at the floor.

The Doctor introduced himself, which was nice, and then asked Anon if she wanted to talk about why we were there today or if she’d rather I began, which I thought was nicer still. Anon pointed to me.

I talked about the new symptoms and the Doctor asked a few questions, mainly directed at Anon, and when she struggled to answer or floundered or eventually said “I don’t know”, I was able to jump in.

“Can you hear what the hallucinations are saying?”
“Is it directed at you? Are they always saying unpleasant things?”
“Do you feel like your thoughts or movements are being controlled?”
“Do you think that people are out to harm you?”
“Are you having thoughts of suicide, or are you feeling suicidal?”

The last question proved very hard for Anon to answer. She said she wasn’t feeling suicidal as such, but she wanted to die or be dead. She said even if she was feeling suicidal she wouldn’t get the chance because I’m always with her.

The Doctor asked, if Anon was on her own, would she kill herself. Anon replied that it would depend on how bad she was feeling at the time.

After maybe ten minutes talking to us the Doctor made a few points:

–> Anon clearly wasn’t intensely manic or depressed, not enough to cause psychosis, and so it was weird that she was having psychotic symptoms outside of a mood episode
–> He didn’t have the expertise to deal with Anon or prescribe a new medication, so –
–> He would refer us to Single Point of Access and then we would be seen by a psychiatrist (cue uncomfortable look from Anon); it would be an urgent referral so we should hear from someone in a week
–> As Anon isn’t feeling actively suicidal he doesn’t want to send us to Crisis Team. He doesn’t think they would be of any help, as it would be Anon having to meet someone and explain everything all over again, then after a few days they would drop her and she’d have to see someone new

We couldn’t have agreed more; we have had nothing but bad experiences with crisis team.

The Doctor ended the appointment by reiterating that we can each phone him at any time, and to please do so if things got worse or new symptoms emerged.

He thanked Anon for being so honest and said he appreciated how difficult this must have been. We were both touched by this.

During the appointment Anon had been twisting her fingers so intensely that one had popped out a little, and was extremely painful. After the appointment Anon was truly broken. For the rest of the night she was irritable, close to tears, found it hard to control violent impulses and just totally stressed.

Today we have been talking and have kind of come to the conclusion that Anon can’t see a psychiatrist right now. I don’t know where that leaves us though.

The GP appointment was hard enough, and that’s only a short walk from our house and in a place Anon is fairly comfortable (for medical appointments, anyway). The appointment only lasted fifteen minutes, so Anon knew it wouldn’t be a long one. We also had just one day’s notice, which meant Anon wasn’t able to obsess and stress over it.

The psychiatrist appointment would be either a 30 or 90 minute’s journey away, which is stressful in itself. Then there’s the fact we’d have no idea who we were seeing, or how gentle they would be, as you can’t pick psychiatrists on their suitability like you can with GP’s. We’d have at least a week’s notice of the appointment, in which Anon’s stress levels would boil over, the appointment would last 45 – 60 minutes and Anon has an inherent distrust of psychiatrists anyway.

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We’ll see you in a week’s time…or tomorrow!

Today was the day I bit the bullet and called Anon’s new GP back, whether she wanted me to or not – she would never be comfortable with me trying to get her help, and she does need it.

I spent a while reassuring and calming her, but when I called the surgery and then again when the GP phoned back she began trembling so hard she couldn’t concentrate on reading, and she had to leave the room.

When I first phoned and explained Anon’s symptoms, the receptionist told me I wouldn’t be able to speak with a Doctor (ie. get a phone call appointment) until a week from today. So next Wednesday, Unless Anon was suicidal and in danger of killing herself. What the hell?!

I calmly explained that Anon is hallucinating throughout the day, every day. She has extreme paranoia and can’t tell what is and isn’t real. I said if I wasn’t watching her, she would harm herself greatly.

When asked again if she was suicidal and in danger I said no, because I am here, but if she was alone she would most certainly badly injure herself, if not succeed in killing herself.

The receptionist said Anon’s new GP would phone us back this evening, and decide for himself if he wanted to see us next week.

The Doctor phoned and I explained that we are at crisis point. I explained that Anon is experiencing psychotic symptoms outside of a mood episode, she is struggling greatly and, truth be told, so am I.

We talked a bit about the ‘new’ symptoms (feeling she is not in control of her actions / speech, that the world isn’t ‘real’, that people are spying on her etc) and the Doctor was fantastic. He came across as being genuinely concerned about Anon / us, and really seemed to want to help.

He booked us in for an appointment tomorrow (bit sooner than next week!), and asked if I would be able to make sure I was with Anon 24/7 and make sure she is safe. I told him that’s what I do every day, and was relieved he understood the gravity of the situation 🙂

The Doctor reminded me I could phone 111 if we couldn’t last until tomorrow, and he said it would be a good idea for me to be there at the appointment (I don’t think we’d get Anon through the door without me…). He had no trouble with me saying that I might have to do a significant bit of the talking, as Anon is not in a good place, and he was fine with me mentioning a few things Anon won’t be comfortable talking about.

I really hope this appointment goes well…

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It’s so hard to get the ill person help…

It’s Anon’s partner and full-time carer here. Just come to have a moan – if we can’t whinge on our blog about Bipolar, where can we?

Things have been hideously hard for quite a number of years now, but it seems to have worsened drastically this past what, four, five months?

Anon is unrecognisable…constant fear and panic, hallucinations…just a total blankness, numbness and desperation. A terror. Last night she sat on the couch for hours, not talking or moving or being, with tears trickling down her face.

I’m pushing so hard against her to convince her to let me get us help, but I’m also having to battle equally hard against the wonderful NHS.

I got in touch with our GP practice and, as the GP that we so trusted and respected has apparently left, I spoke with the receptionist about getting Anon a new GP, and asked if there were any that specialised in mental health.

The receptionist was surprisingly helpful (they usually suck) and recommended a Doctor who sounded good. I spoke with Anon and persuaded her to give him a try, but we had to wait until this week when he was back from paternity leave.

We were supposed to get a phone appointment at 5.30pm from the Doctor, but at 6.10pm it still hadn’t come and we were both anxious and stressed and we also really needed to walk our dogs.

We headed out and at 6.20pm, when we were on a narrow country lane with absolutely no lighting and where cars drive way too fast, we got a phone call from the Doctor and missed the call. We rushed to a footpath off the road and phoned back less than ten minutes after the call, but the surgery was shut so nobody picked up.

The Doctor left an answerphone message which stressed Anon out, as even though I clearly told the receptionist why I was ringing and that the Doctor should talk to me, and not Anon, the Doctor started the message by saying “Hello [Anon]”, and went on to talk about how Anon needed a medication review and talked about something to do with her prescription…THAT’S NOT WHY WE MADE THIS APPOINTMENT!!

And as Anon has such trouble trusting Doctors after years of being treated like shit, she now doesn’t want to see him…

This weekend has been absolute hell and I am amazed we have got through it without a suicide attempt. Bless Anon she has been fighting so hard and when out walking, if we bump into someone we know or she’s training our dogs she has put on such a convincing mask.

Tonight I will probably end up calling NHS 111, but I don’t see how they can help.

Our issue at the moment is the one professional who treated us well has left, and Anon finds meeting new Doctors terrifying. Likewise we have no help from a Social Worker as she blew it with Anon, and Anon now doesn’t want to get help from the same establishment due to her paranoia.

Crisis Team have always made the situation worse and going to A&E would be incredibly stressful and difficult for us all, and in the past when we have gone to hospital we have been sent away with ‘keep doing what you’re doing, watch her 24/7 and go see your GP when you can.’

Nobody helps.

Professionals never seem to take Anon seriously, and I don’t know why. Is it because she almost always turns up for appointments, and she tries her best to answer the Doctors’ questions? Is it because she’s not crying hysterically, or screaming and shouting? Because she’s in just as much pain, just as much danger, as if she was.

Where else can I go for help? We can’t live like this. I have never seen Anon in such a crisis and I can’t help.

Most the medications we’d be willing to try for Anon I think we would really have to fight for, as the medications she wants to try either aren’t used in the UK or aren’t used for Bipolar…but the ones we have been offered (Seroquel / Quetiapine, Lamotrigine / Lamictal, Depakote, Zyprexa / Olanzipine, Lithium) we have either tried or all have side effects that would scare me, never mind Anon!

This is a huge rant, but I need to get it out somehow.

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When being ill becomes the new normal

It’s 2.45am and I have to be up early-ish tomorrow >__<

My sleep still absolutely sucks. I just don’t get tired anymore, and when I finally get to sleep I wake often in the night and sleep poorly.

Hallucinations are terrible, and I am constantly twitchy, alert and panicky. I frequently demand “can you see that?!” “do you hear people?!” because I can’t trust what I can see or hear anymore…it’s horrible, it’s absolutely horrible, and it SUCKS.

Paranoia is horrendous. I know people are spying on me, people are talking about me and the roadworks & electrical repairs outside the house make the hairs on the back of my neck stand on end. I am not comfortable with them.

My partner phoned up our GP surgery last week and spoke to a receptionist there, because he’s decided we need help NOW and my old (really awesome) GP left.

He said the receptionist was lovely, which is a first, and she said it’s important I find a Dr I feel safe with. She recommended ‘my’ new GP because he’s ”modern” and ”gentle”.

I won’t meet with him though. I can’t, and he won’t be able to help anyway. My partner won’t let me bumble along on my own though, he wants help for us so he’s arranged a phone appointment to talk to the new GP this week, as at the moment the GP is on paternity leave.

I don’t want this.