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Non-epileptic seizures

So it seems that what I thought were dissociative episodes are actually non-epileptic seizures, also called functional seizures and dissociative seizures.

I have to have an appt with my GP soon for med re-fill (I haven’t had an appt in a long, loooong time, so this is terrifying) so I’m going to talk about NES with him too. Ugh.

I’ve been having at least one seizure a day. I really don’t know why I’m having so many. Build up seems to last about half an hour, I’m comatose for 10-40 minutes, and then I feel groggy for a good few hours afterwards. The other day I lost six hours to a sezure. I can’t remember almost any of it, and the seizure itself only lasted 30 minutes 😦

My pup is awesome whilst I’m having a seizure and also alerted me a few times before having them, so we will be working on this and I hope she can become my seizure alert dog.

The seizures are really scary and seem easily triggered. Gog doesn’t even want to leave me alone for a second (seriously, when he’s on the loo he’s shouting down to me!!!), because if I have a seizure I could hurt myself, our pup could chew through a wire, anything could happen. It’s really scary, for both of us.

Doing so much research, Gog and I have worked out the best ways that we can help prevent a seizure, bring me back from one etc. One thing we do is with a dog toy, a ball covered in bobbles, and one bobble is missing. My partner passes me it when I’m coming out a seizure and tells me to find the missing bobble.

I didn’t need this on top of Bipolar and psychosis…but we’re finding ways to make it less terrifying. So.

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Depression, replaced with what?

That awful, all-encompassing depression has gone.

I don’t know what it’s left me with. I can’t tell if I’m manic until I’m really manic, flying high, and my partner’s kinda the same. If I’m hypomanic right now, it’s weak, I can’t tell 😛

I’m hella irritable, I have a decent amount of energy and motivation, and when I’m not flying off the walls in a rage things are going okay. Psychosis still a major issue, but it always is and I don’t count that as an indicator of mood.

I’ve got more things done with my pets today than I did in five days of depression. It’s crazy quite how much your energy levels and capabilities change with your moods. That’s something I wish more people understood.

I wish I could swallow or erase the irritability. It’s SO HARD (read:impossible) to contain it, and it ruins everything around me. I feel so damn sorry for my partner >__<

I get scared whenever I feel like this, I feel like I’m totally ruining our relationship and he’ll stop loving me.

You could argue this is ridiculous, he understands it’s an illness, he’s stuck by me through harder times yadda yadda yadda…that’s true, but it doesn’t mean my symptoms don’t wear him down over time. A bit of irritability might not seem a big deal, but it shows itself as hatred and lashing out verbally, and that’s awful.

On top of that he never gets any respite. I never have okay days, so he never gets any relief. I hate myself for what I put him through.

It’s tough, but we adore each other…that has to count for something.

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trapped in my body

todays been weird.

My mood’s been terrible kind of manic but intensely irritable. not even irritable, rageous. Over everything. And like a sulky pouty child if my partner asks my something I huff or respond with a petulant NO I hate it.

Then out of nowhere i became mute and still. This happens when I’m stressed or depressed sometimes, I lose myself and will spend hours sitting staring and not moving. Even when my mood’s not too bad I can get stuck gazing at nothing and people will struggle to ‘bring my back’, this has happened since I was at least 16.#

Well today I was literaaly stuck in my body. I couldn’t move couldn;t talk couldn’t do anything. I couldn’t think very well and it was all just very weird.

Bits started coming back. I could move my fingers enough to do jagged writing to try and communicate with Gog, but getting him to understand what I needed and what was going on was difficult. It was intense.

Several hours have passed and I’m still fighting through treacle.

I can move my eyes, move my head slowly, type slowly. I can walk but it doesn’t feel real or right. I can hum but talking and moving my lips and opening my mouth is a real struggle and mostly beyond what I’m capable of.

My thoughts aere mush and I don’t understand where this stream of words and sentences are coming from because I’m just sat here dazed yet my fingers are dancing over the keyboard and words are appearing on the screen from my head.

My head is fucked and I don’t know what this is.

i made Gog look up what a stroke is like and he reassured me it’s not that. I scribbled I thought I had a brain tumour (I always think I have a brain tumour) and he said it’s not that because he’s done lots of research over the years every time I’ve been scared.

Dissociation combined with psychosis combined with catatonia? I don’t know but it’s really not nice and it terrified GOg.

New symptoms appear, everything always gets worse.

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Knocked down

Gog here.

I have a very important post to write at some point, but I don’t have the energy yet – even thinking about what I want to write about makes me incredibly angry and sad.

I plan it to be a long, detailed post on the way we, and especially Anon, have been treated during applying and appealing for PIP, Personal Independence Payment.

I’ve already talked quite a bit about the issues with PIP, and also that they have awarded Anon 11 points both times (12 and over means you get higher payment) – we have been told she should be awarded at least 26 points, so it’s extremely frustrating!

We received some absolutely ridiculous news in several  letters, and when I phoned up to complain I was told they have no complaints procedure, and as on their end they had ‘followed the book’ there was literally no way to complain.

I want to complain because Anon is being discriminated against.

They are refusing to award points that she should easily get, and because it’s a mental disability and not a physical one, they are treating it completely differently.

I want to complain because I am tired, so tired, of people – government agencies, medical professionals – telling me that Anon doesn’t require the help or assistance that she so desperately needs, because she has an invisible illness.

It’s all well and good telling me that you’re not going to see Anon because she has a mental illness and you seem to think mental illnesses are bogus…okay, fine, I’ll be her 24/7 carer and it’s exhausting and difficult, but I’ll do it because I love her…but when you then refuse to give out the correct amount of money, what do you want us to do??

I can’t work because I must care for my partner, but we’re struggling to live because we don’t get the money we’re entitled to

I plan on contacting charities and legal aid, not that there’s much we can do as if we took PIP to a tribunal we could lost ALL our benefits.

But I’m contacting charities and legal aids because I want to complain, I want to complain about the system, and I also want to contact some newspapers and see if they will talk to me. Difficult with Anon’s paranoia, but I’m so tired of this uphill battle and feeling completely ignored and alone.

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Why am I suddenly nocturnal??

My sleep had been regular for weeks and weeks.

It’s a rarity for my sleep to be *so* predictable, I can only remember one other time it followed such a regular pattern in the past few years. For probably around 2 months now I’ve been going to bed between 10-11pm and, although the amount of sleep I’ve needed has varied, bedtime has stayed the same.

That’s pretty phenomenal, and most nights I was even averaging 7-8.5 hours sleep a night, regardless of mood.

Then, all of a sudden and within the past three days, I’ve become nocturnal again. This seems to happen very occasionally (only a few times a year) – it just happens, out the blue.

Last time it happened we were entirely nocturnal, and it lasted for months…bed at 7am, up at 5pm! My sleep was impossible to rectify, and we really did try – then all of a sudden, one night, it just changed back.

We can never pinpoint a trigger (after all, life is always incredibly stressful) and it’s not mood dependent…that is, I don’t just go nocturnal because I’ve gone manic or depressed. It just happens.

It started slowly one night a few nights ago; I wasn’t tired at our usual bedtime, and it was midnight when we went through. I didn’t really think anything of it, it was only an hour or so different.

Then the next few nights, I was going to bed at 2am at the earliest. From nowhere. If I try go to bed earlier, at my usual time, I’m awake for hours and end up incredibly frustrated.

I feel awful when my sleep pattern changes so drastically. It can’t be easy for my partner to adjust alongside…

The past week I’ve been wearing a blindfold in bed, in case I’m really sensitive to light. I think it’s helped a little, especially when I wake up partway through the night or in the early morning. When I first go to bed, instead of it taking me hours to fall asleep, one night I fell asleep in as little as 20 minutes. Last night it still took over an hour though :/

I’ve had to fight for sleep for years now, even if I’m exhausted I have to fight for sleep. It really, really pisses me off. I used to love my sleep 😦

I longingly remember the days when I’d fall asleep as soon as my head hit the pillow…

2

Mania & sleep

Gog here.

Still we trudge through Anon’s manic episode. It’s become our nightly ritual that I sit with her and help her understand how manic she is – according to her she’s stable, not manic, and if I didn’t insist she would mark that down on her mood chart.

Considering we want to use this chart as a reference, and as evidence to various professionals in the future, it’s important it’s accurate.

Every night we sit down and Anon begins to fill the chart in, and I have to gently disagree and say “let’s think over today, do you remember how you haven’t been able to sit still at all? And you’ve had to keep moving? Maybe we should lower that point…”

I’ll point out her different scores (particularly the sleep, ability to sit still and concentrate, and racing thoughts) and guide her to the understanding that her mania rating needs to be more than 5/10 – suicidal is 0, extremely manic is 10, stable is 5.

I could just let her fill it in herself and edit it later, but I think trying to help her understand and recognise she is manic is better.

Her sleep has been abysmal since 4th May now. The night before last we decided she should take 2.5mg of Valium, as she wanted to get some sleep (oh how she HATES not being able to sleep at night!) and I wanted to prevent the mania from climbing. That night she had 10 hours sleep, today she got 9.5, including 7 hours overnight and several naps.

Here’s the past week in sleep:

6 hours broken sleep
5 hours (including a nap)
6 hours broken sleep
5 hours broken sleep
4 hours broken sleep
10 hours good sleep (Valium)
9.5 hours, mix of broken and good sleep (including naps)

To say this has been going on so long now, and she usually sleeps 9-10 hours a night, she must have one hell of a deficit…

She’s asked for another 2.5mg of Valium again tonight. I know she isn’t currently prescribed it and no Doctor would be happy we were using it like this, but she needs to sleep, and if the NHS won’t offer us any help I don’t know what else we can do.

I’ve noticed after a decent night’s sleep the mania seems less intense…she’s slightly more able to sit and focus on activities, and she seems happier instead of exploding with energy or rage.

Aside from sleep we’re still doing pretty good; Anon is handling this manic episode like a champ and trying hard. I just want to try prevent it climbing higher.

Nobody from the NHS has been in touch. We have received no help since we started fighting for it in November 2015, and we still haven’t heard from the place that the GP said would get in touch asap – we were told that on April 7th.

I don’t really mind because I think the reason Anon is doing so well is that we aren’t pushing for help and dealing with stressful appointments…I just think the NHS is absolutely disgusting when it comes to mental health.

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I can’t even give up

Somehow, my mood is getting worse.

I thought I was at rock bottom, but I guess I wasn’t. Surely I am now.

Last night Gog phoned 111 to ask about how we could go about getting help – I don’t want him to phone the place where we were supposed to have the appt with the social worker I hate. I don’t trust them and just thinking about the place makes my paranoia rocket and reduces me to tears.

Talking on the phone, 111 were again helpful.

They said a psychiatrist would come out and do a home visit if the travel to appts caused me great distress – this does indeed mean that our GP was bullshitting at our last appt.

They also told my partner that we could go to A&E at any point, even if it didn’t feel like it was an emergency. We have been told over and over to go to A&E and that we wouldn’t be wasting time.

At this point, I feel so fucking bad I would go to A&E.

The only things stopping me from going are that when we’ve gone in the past we have been treated like shit on the Dr’s shoes, it’s an absolute nightmare to get to, and I just don’t have the energy. I really don’t.

I was a wreck after Gog spoke to 111 last night.

I started panicking about appts and seeing social workers and psychiatrists again. I ended up swallowing as many pills as I could whilst Gog was out the room, various pain killers and some Abilify.

It wasn’t planned, I was just…I needed to do something. It was desperation to get everything to stop. If it was planned I could have done it all much better…

I’ve done dog walks today which I normally enjoy…the weather was good, the dogs rocked, the walks should have been nice, but I just felt numb and empty. I’ve had no enjoyment. Moments of true despair and unbearable pain; for the rest of the time, just numb.

Visual hallucinations still prominent. All sorts of visual hallucinations. Very tiring.

I need help but I can’t leave the house.

I need help but I have no trust in the services that are in place to help me, they’ve done nothing but fail me before and this time it won’t be any different.

I need help but I don’t trust the world.

I don’t need help, I just need it all to stop.