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When you need help

and can’t get it anywhere.

* so anxious I can’t concentrate on anything and have to fight so hard to pull the shutters down so I look normal to everyone else

* sitting statue still with tears rolling down your face and replying one syllable answers in a neutral tone

* there’s a microchip behind my ear theres a chip behind my ear there is a fucking chip behind my ear under my skin

* my head is loud it is so loud there’s so much noise inside and out. You can’t talk like this, you can’t concentrate like this.

* people don’t believe me, they’re not listening. I’m already anxious because of it but being told it’s not real is not helping. I feel like I am on the verge of full blown hysteria. Time to sit very still and be blank.

* Thinking days from now or years from now one of us will be ioll, I will have lost Gog; he will have lost me

* the things are back, that move. The animals or the blackness. In the corners, they hide.

* I am being watched

Terrified does not come close. but who can help? I won’t use crisis team i only have the gp and they can’t do anything.

 

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The lies and the appointment

Gog here.

As I mentioned previously, Anon had an appointment with Single Point of Access on Tuesday. This was the appointment we had been waiting for, the appointment to see a psychiatrist our GP promised us mid November.

The morning of the appointment (the day after my last post) we got a letter in the mail, a little pamphlet giving us information about the appointment we would have later that day…and it said we would be seeing a mental health nurse.

Oh. My. God.

No no no no no no! We had been promised an appointment with a psychiatrist. We needed an appointment with a psychiatrist! Someone who could review Anon’s diagnosis, her symptoms and, most importantly, help prescribe a medication that would help mute her psychotic symptoms.

I phoned SPOA and spoke with someone at the hospital, who said that the appointment was with a nurse and that we would have to wait at least 3 extra weeks for an appointment with a psychiatrist. I phoned the mental health charity Mind to ask for advice (they didn’t have any and started wittering about sending a volunteer around to talk with us and ‘provide structure’ – ??) and I phoned the charity Bipolar UK, who were more helpful.

I phoned SPOA back to cancel Anon’s appointment. It just made no sense for us to go when it wasn’t to see a psychiatrist, the appointment was over three hours travel there and back, and Anon was super stressed and the rain was torrential!

When I started trying to cancel the appointment the person on the phone transferred me to a clinician, and they said that after the appointment with the nurse we could see a psychiatrist…dear god!

By this point we were late for the appointment because I’d been phoning places asking for help, so I told them we’d be 20 minutes late and we set off in the rain.

The appointment with the nurse went really well. Anon was super stressed and anxious, but the nurse was calm, supportive and reassuring. Very gentle, which is exactly what we needed. She listened when we corrected her (eg. she thought the extreme anxiety came first, then the hallucinations began as a result of the anxiety, and it was the other way around) and said we were doing absolutely everything right.

Anon did really well, I was so proud. To begin with she couldn’t even look at the nurse or answer any questions, but the nurse was happy for me to chip in and get the notebook of things I / we had written down. Towards the latter of the 60+ minute appointment Anon was able to talk more and calmed down a little, although she did break down at one point and struggled to stop crying. It was good crying though, not like when our last social worker bullied Anon to tears.

Unfortunately at the end of the appointment the nurse told us that there was no psychiatrist, and that their service didn’t have one. Fuck!! Then what was the clinician I spoke with earlier on about? Were they just lying?!

The nurse is trying to get us into another service to have Anon seen by a psychiatrist as quickly as possible, and until then we’re having to rely on the Crisis Resolution and Home Treatment Team. Worrying.

Anon’s anxiety seems a little better since the day it was at it’s worst. She’s not extremely depressed, but when we were walking our dog today she said her head was “loud” (auditory hallucinations) and you could see she was very distracted, found it hard to concentrate and was irritable.

I honestly can’t imagine what it is like to live not just with episodes of mania and depression (with no stability in between), but also with the added joy of constant psychosis now. Life certainly is unfair.

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Crisis Resolution & Home Treatment Team – the useless service!

Gog here, but I can safely write this post for Anon too.

Crisis Team have failed us every time we have contacted / seen them.

There are lots of things out there that have a high rate of dissatisfaction and that don’t fulfill the job they are supposed to, but I think the scariest thing about CRHT is that it’s for people who need help urgently. They are in a crisis. It’s not just Anon and myself that have had terrible experiences with Crisis Team either, I’ve read and been told lots of things by other people that make my stomach tighten.

The first time we were referred to CRHT was actually the first time I managed to get Anon to see a Doctor, ever. She had been actively suicidal for months; we had only been dating about 7 months and I was physically exhausted from having to watch her every second of every day to keep her alive. The GP referred us to Crisis Team immediately.

We met with two women and spent a long time talking with them…I don’t remember exactly how long because this was seven years ago and we weren’t as experienced with the NHS then. We actually believed that this appointment would help us.

The appointment ended with the woman telling Anon that she was ‘just stressed about her exams’, and telling her to try relax. We had spent the past hour at least telling them she had been suicidal & depressed for 5 months, she couldn’t go out alone and her eating disorder was in full swing.

We got out the hospital and Anon burst into tears. I remember she just clung to me and sobbed. I wanted to go back in, to argue with them, but Anon isn’t forgiving…once someone has done something to her, that is it. She won’t trust them again.

The next time we saw them, a year later, was when I had taken Anon to A&E because I was scared she would kill herself while I slept. The Doctor at A&E treated Anon like a child – he was saying to her “And do you promise to go see your GP on Monday? And do you promise not to hurt yourself until then?” And Anon was just nodding dumbly because she had already shut down and would have agreed to anything then walked out and jumped off the nearest high building.

That was supposed to be our A&E visit, but I argued ferociously to see Crisis Team. I wish I hadn’t.

We waited hours until two men showed up and asked to speak to Anon. They wouldn’t let me go with her. I don’t know why, and at the time I wasn’t used to fighting for her – I still trusted the system, remember? I asked them when they’d talk to me, and they said they’d have a meeting with me after talking to Anon.

Anon doesn’t remember much of what happened. She said they took her to a room and asked her question after question, while she stared at the floor and couldn’t answer. She was struggling so much at the time, and on top of that she had (still has to some extent) trust issues and fear with unknown men.

After what felt like hours Anon appeared. You know what those idiots had done? Once they’d finished talking to Anon, they’d opened the door and told Anon she could go. She was in a hospital she had NEVER been in before, and she had no idea where she was or how to get back to me!! They left her to wander, terrified, around a hospital!

I was confused about when they would talk to me. I eventually saw them walking towards the hospital exit – wait, what? I ran to catch them up, and asked when they would be talking to me, and they shouted “Anon will tell you what we talked about” over their shoulder. That was it.

When we left the building Anon started crying hysterically.

The third time we had to deal with Crisis Team was after an urgent GP appointment following an overdose. The GP became quite panicked when we told him about Anon’s overdose; he took some bloods and then phoned and babbled to Crisis Team. They later phone and, after a twenty minute phone call, said they couldn’t help because Anon wasn’t “actively” suicidal…um, she had just taken an overdose the day before?!

The fourth time we saw Crisis Team was when Anon had been manic for weeks; she couldn’t sit still, she was hallucinating, and she thought she was invincible. We saw one male psychiatrist, and he was okay…the best experience we have had with CRHT anyway.

He asked Anon questions but she was too distracted to answer, and he wouldn’t let me help fill him in. He seemed to cling on to and ridicule things that I thought were totally unimportant (eg. Anon drank alcohol for the first time when she was 13, that she drank as much as 3 double vodkas on a night out – “do you have to be carried home after that??”). At the end of the appointment he told us to go to the GP and get referred to a psychiatrist asap…wow, thanks genius!

This brings us to yesterday 🙂

Yesterday was a really terrible day. Anon was panicked from the get go, but the sort of panic where you can’t function, think, exist even. She couldn’t talk because her voice would wobble and she would cry. She was terrified.

I phoned Single Point Of Access and spoke with someone there, and they gave us an appointment for tomorrow (today). We’ve never been given an appointment with someone so quickly! They told me to phone Crisis Team if we couldn’t cope.

We couldn’t cope, so I phoned Crisis Team. I told the man that answered that Anon’s anxiety was through the roof. She was hallucinating and extremely paranoid. The man spent ten minutes talking about ‘calm breathing’ and then said we should phone SPOA and ask them to push the appointment forwards.

This was ridiculous.

Not only had SPOA advised me to phone CRHT (and yes, I told him that), but by this time it was 4pm. SPOA is around 90 mins away, and even if they could fit us in (which is unlikely) they wouldn’t see us after 5pm. CRHT is a 24 hour service, yet they wouldn’t help us.

Thanks Crisis Team, you are the worst service we have ever had to deal with 🙂

I’m very anxious about the appointment today, mainly for how it will affect Anon. Fingers crossed.

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I need to understand

Gog here.

I screwed up last night…or this morning, whatever you want to call it.

Our sleep is messed up, so if I / we wake up in the night we have to get up and take our puppy for a big walk, because we usually fall asleep before doing his last walk of the night. We walk him at 6-7pmish and are supposed to give him a smaller walk around 10-11pmish then go to bed. Realistically we fall asleep around 8 / 9pm and have to take him out in the night 😀

Last night we both woke up at 3.30am so I got to have Anon with me for the walk too 🙂

Because it’s so quiet at that time we walked through the small town centre and looped about all over the place…good practice for teaching our puppy to walk on narrow pavements, cross roads, come away from litter etc.

On our way back there were people loudly talking, down at the end of the road near the square. I couldn’t see them because they were in a sheltered bus stop, but because it was so quiet they sounded very loud.

Anon paused when she heard the voices, then continued walking with a carefully blank face. I automatically turned to her and said “I hear them too.” She looked relieved, “Do you?” I nodded.

“Well, here’s a lesson!” She said, smiling a little, “That’s exactly what my auditory hallucinations are like, the ones where I hear voices. Echoey, loud, real. Sometimes I can hear what they’re saying, and sometimes I can’t.”

This is where I fucked up.

I should have thought about this. I should have realised how eerie that sounded even to me (who knew they were real) and how terrifying it must be to hear voices like that daily, and to always try battle yourself and tell yourself they’re not real.

Instead I said a blase “Oh, bless you,” and put my attention back to our puppy.

I have no real excuse: yes we do have to concentrate a lot on our puppy’s training when we’re walking him, but I still could have said something better…something along the lines of “Oh shit, that’s horrible. Thanks for telling me, that’s really helpful”. Or “Oh shit, that’s horrible. Remind me of this when we get home, and we can talk more about it.”

But I didn’t.

Anon was sad, angry and hurt for the rest of the walk. She felt she’d reached out to me and I hadn’t understood, or appreciated what that would really be like.

She desperately wants me to learn more about her experiences, to imagine how it feels. She seems very alone at the moment. She doesn’t think anyone understands how scary her life is, and to be fair I don’t think any of our friends / family / even me do.

I promise I’ll do better next time.

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Colouring

Another nightmare yesterday.

This one involved me walking our oldest dog, and my partner was up ahead because we’d had an argument. We were walking from our village into town.

On the opposite side of the road an elderly brindle Staffy was walking past (this is a sweet old dog that we see fairly often). We carried on walking, me and my dog, and a few minutes later I heard the thudding of something running to us behind, and a low threatening growl.

I turned around and there was a HUGE Newfoundland running at us!!

I stood in front of my dog, assuming the Newfie was after him, but the dog ran straight past us…and launched itself at my partner 😥

I dropped my dog’s lead and told him “Run; go home!” (apparently he understood this in the dream) then, screaming hysterically, I started to run to my partner to help, but he seemed so far away. This giant dog was leaping at my partner and savaging, biting him, and he was trying desperately to get away. It was horrible.

As I was running to him a car approached, and I felt overwhelming relief that someone was here to help.

The car stopped, and then begin turning around, to go back the other way. I ran to the car flapping my arms, desperate for them to stop. A man in the back tried to get out to help, but the driver yelled at him and sped off. Meanwhile the dog was still jumping at Gog as he tried to get it away.

Then I woke up. No more sleep for me after that!

Now the terrifying thing was, yesterday we actually walked into town (minus our dog and obviously walking together), and at the exact point I had seen the brindle Staffy in my dream, we saw the brindle Staffy…IN THE EXACT SAME PLACE AS MY DREAM! I don’t know what that means, Gog says it means nothing but I’m always convinced random things mean something. I was pretty freaked out, and Gog had to work hard to keep me calm.

Tonight I didn’t have any nightmares, but I did wake up at 5am with my mouth flooded with acid, so much so that I started coughing and choking. I never had a problem with acid reflux before I took Quetiapine / Ebesque last year. I’ve been off that med since summer and still have acid reflux 😦

Has anyone else had this?!

So I am awake early again. I’ve been doing some colouring. We spent £7 that we don’t have on some posh colouring markers yesterday…they haven’t been as good as we hoped, because all the colours are far darker then their lids, but they’re still cool!

We have too many colouring pens to fit in our home-made container now 😀

pens

It was so full we couldn’t get them out; if you held it upside down none fell haha!

I switched our rodent food into a different tub, and now the pens have a new home 🙂

pens1

And my awesome dog colouring book, this is one of the quickest / easiest ones in there.

colour4

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The nightmares

4.30am: can’t sleep after a nightmare.

I have always had vivid dreams, ever since I was a tiny kid. The sort of dreams where you aren’t sure if it really happened or not, even weeks later.

You can usually tell when my mental state is getting worse, particularly any anxiety / depression, because I have way more nightmares than normal.

This past month I’ve noticed a drastic increase in nightmares, and this past week I’ve had 1-3 nightmares every night. Ughhhh!

Usually I’m good at rolling over, grabbing onto Gog, and eventually managing to get back to sleep. Sometimes the nightmare is absolutely terrifying, or sparks other worries that I can’t help but obsess over, and sleep is out of the question.

My bad dreams are always about injuries, illness, death or destruction.

There was the one where I had cut my thumb off, and held onto it in my left hand for comfort…only I hated the feel of it, but every time I put it down I started crying hysterically. For whatever reason I couldn’t verbally tell anyone about it, and I was extremely worried about the wound getting infected, so I would go up and silently hold it out to Gog and my parents…and they would look the other way and act as though nothing was happening.

That was weird, but it wasn’t too bad.

There was the one where we were at war, and bombs were falling. Most my family raced into an old church, where there was an official bomb shelter. I was stood talking at the window and, almost in slow motion, a bomb fell through the roof and landed right on my dad. From my viewpoint I could just see his legs twitching under a pile of rubble. Screaming hysterically I ran to him…and it was just horrible.

That was bad.

Tonight I dreamt my family were all going on holiday to Disneyworld, but I didn’t want to go because I am absolutely terrified of flying (I have a LOT of nightmares about plane crashes).

As my mum was driving home discussing this with me, a crash happened involving a huge lorry…petrol went everywhere and sloshed my mum’s car, and then flames happened and the outside of our car was on fire, all over the rear windows where me and my older cousin were sat.

I managed to get the flames on my side put out, then grabbed a bottle of water, opened my window, and climbed across the car roof to put my cousin’s side out. We all survived, but my right hand was permanently scarred and useless. Skip to my family going on holiday a few months later and I was trying to get Gog to stay with me while they were away, but he couldn’t. Being alone was very scary, not only because I’m not used to it (I’ve lived with Gog for six years now) but there were also supernatural scaries…the damn grudge, I’ve been scared of it for a decade now. Wish I’d never watched that film!

Although this wasn’t the worst nightmare, it got me thinking and worrying about if Gog died and I had to live alone. Especially if it happened years from now. I don’t have any siblings, I’m not close to my extended family, and I don’t have any close friends. I would have nobody to help me out. I’d be alone.

Even if my parents were around & I went to live near them, I couldn’t live with them because I have two dogs (my mum has severe allergies) plus if we spend a lot of time together our relationship quickly deteriorates. That and they really don’t have a clue what my Bipolar is like, as they only see me when I’m at my best, and able to act stable.

So then I was fretting about the fact I really wouldn’t be able to cope with our dogs on my own, but having to let them go would destroy me. I could possible cope with just one, but having to choose and rehome the other (especially without Gog for support) wouldn’t be possible.

This got me worrying about Gog, if something happened to me, too.  He’s not that close to his family and I never want him to be sad. Would he manage to find someone else, to fall in love and be happy again?

So I sat up and started writing a blog.

It’s pretty cathartic, and if nothing else it distracts me from thinking about gross nightmares and those obsessive, anxiety-induced thoughts. Now I’ll probably stick some kid’s cartoons on and do some colouring.

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I’m drowning

This anxiety is making it so I can’t breathe.

The funny thing is I will sit here, struggling to breathe, trembling, sweating, and wanting to cry…and it’s nothing compared to how terrified I get at Dr’s appts. If my family could see me now they’d think it was terrible, yet they can’t understand why I struggle to ‘just go to appointments’.

I had a migraine last night for no reason. I woke up in the night with extreme pain, a sharp stabbing at the very left side of my head, and had to get Gog to grab the sick bowl as I felt so nauseous.

The other migraines I had fairly recently had a cause (no sleep), but I’m freaking out now that I have a brain tumour, and that the other migraines were actually caused by that.

I’m trying to rationally calm myself…but what if the migraines are caused by a tumour? What if my psychosis is too? What if I’m going to die? What will Gog do? What if Gog gets ill; what would I do? How could I live without him? Where would I live? What if we get ill five years from now and all I can think of is the millions & millions of times I was horrible to him? Will we still be alive forty years from now?

It builds and builds and it’s crushing me.

My health anxiety is really, really horrible at the moment, and Gog says my thinking is a little warped. People from the government are spying on me, and I think our landlord has bugged the house. I know these things, but Gog doesn’t understand. I don’t trust the next door neighbour either; if she’s looking out the window as we get back from a dog walk I can’t go in, we have to go hide around the corner and then Gog goes to check if she has gone.

I’m sitting here and I’m crying and I can’t breathe and I just want all this to stop, I just want to be a normal person and have a few days stability, a few days happiness.