0

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.

0

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.

0

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.

0

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.

1

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.

0

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.

 

0

Leave me alone!

Me and Gog had an argument today.

We were due to see his parents and, along with some other stuff, he lied to me. I cannot *stand* being lied to, especially by him, and after past events between us it’s really not good.

When I told him I wasn’t going out, he was refusing to let me stay home alone because ‘you might kill yourself’ – NOTHING is going to wind me up as much as being told this!

First of all I am 26 fucking years old, you can’t tell me what to do and I should be able to stay home alone. Secondly I’m very open with Gog, and always tell him when I’m feeling that bad – if I say I can safely stay home, I can almost always safely stay home.

Today I’m having an okay day, my suicidal thoughts are barely scratching the surface…let me be alone whilst I can be!

And why the hell do I have no choice but to stay with the person who has just pissed me off and hurt me?

I told him being forced to go out and act happy around his parents when I wanted to hole up at home and hide would be horrible. I’d be irritable, stressed and upset by the end of the day.

After lots of wasted time and dithering on his part, he left.

I love him to bits but I feel like we’re being pushed to breaking point. I *know* he does things to help and he’s an amazing guy…but I am tired of feeling misunderstood, under-appreciated and unheard.

We both need to work on some things, but sometimes it feels like I’m the only one trying…

0

They have to be joking, right?

Gog here.

I am furious. Fuming. I don’t know if I’ve ever been so angry.

I have been trying to get Anon help this time since early November. That is when we went to the GP and he first sent off the urgent referral to the psychiatrist.

Since then we didn’t receive a letter from Single Point of Access, meaning they discharged us without us knowing. I got in touch with the GP having not heard anything, he was annoyed at SPOA, and contacted them again.

We were then seen by Single Point of Access in late January, who then proceeded to mess us about and didn’t bother getting back in touch. Anon’s GP was off for a month so, after waiting until things were unbearably difficult, I phoned 111 early last month and had an emergency GP appointment where they prescribed Anon sedatives.

Another long gap and nothing was happening so I persuaded Anon to go to another emergency GP appointment early this month.

This GP was much better than the others and promised to chase it up; when I later phoned I was told she had tried phoning them every day but nobody had answered the phone or gotten back in touch.

That was over a week ago, and we haven’t heard anything since.

Then all of a sudden when we got home early evening today we had a letter.

Anon’s had an…okay-ish day today. I managed to get her out the house, but her anxiety has been sky high and she’s been quite low. Well the letter really didn’t help…you know what the wonderful NHS have done?

Only given us an appointment. For tomorrow. At the place where Anon has said she doesn’t want to go back to and with the person Anon asked not to see again.

And the appointment STILL isn’t with a psychiatrist!

Wow. Just wow.

What are they thinking?!

Also the letter says we’re to let them know ”within the next seven days” if we can make the appointment or not, even though the appointment is TOMORROW! Maybe I will just phone in five days time to cancel it, ha 🙂

Anon freaked out big time.

The person they have given her the appointment with triggers extremely bad memories in Anon (to be fair this person did do a stupid thing), and she also can’t understand why they would put this person back on her case when she has asked countless people to make sure it’s nothing to do with her.

On top of that the appointment is tomorrow…this is too short notice for Anon, she would not be able to sleep and the stress would most certainly bring on a migraine and possibly a severe mood episode.

Obviously we are not going to the appointment, and I guess I will phone and cancel it tomorrow. I am so angry they had better not try and argue with me because I think I might explode.

Where this leaves us I don’t know. Anon has lost trust in the system again, she really only wants to deal with her GP from now on, but he can’t prescribe her meds…

Sigh.

I really need to file a complaint. It is getting to the point where it is beyond ridiculous now.

 

2

Carers must really care

For anyone who doesn’t know, Gog is my partner.

We have been dating for just over 6.5 years, and he has been caring me for over 6 years. Yes, he was very unlucky 😛

About a month after we started dating, I got news that a family member had terminal cancer, and it triggered a lot of shit. I had been mostly ‘recovered’ from an eating disorder for six months at the time, but the news sparked it off virtually overnight…over-exercising and starving myself became one hell of a way to cope and I basically stopped eating.

Alongside this I fell into a deep, dark depression which was one of the longest episodes I’d ever had, and lasted way over six months.

So we were still early in our relationship when Gog was kind of thrust into the role of being a carer, but he was bloody amazing. He worked out ways to help me to eat – for me this was gentle encouragement, reminding me that everyone has to eat and, when I was ready to eat slightly larger meals, he would take over the responsibility of making the food and knowing what the ingredients to the meals were. I would give him a calorie bracket (eg. 300 calories) and he would make a meal and sit with me as we ate.

As the depression got worse I became impressively suicidal – I have not felt so determined to kill myself since.

I was fairly honest about my intentions, and Gog kept a close eye on me. There were several close calls…times when I snuck out of the house whilst he was sleeping (one time he ran to an overpass to stop me jumping whilst making sure to keep me on the phone, another time he hunted me down taking an overdose in the darkness and took me to A&E)…but he did everything in his power to keep me safe.

He was nineteen at the time, and he had no experience with depression, eating disorders, or suicidal ideation before me.

He is amazing…always has been, always will be.

Over the years my illness has steadily gotten worse; we have gone from depression, to Major Depressive Disorder and Generalised Anxiety Disorder, to Borderline Personality Disorder, to Bipolar Disorder.

And now we seem to have a weird version of Bipolar Disorder where I have mood episodes, sometimes that bleed into each other, and where I experience psychosis all the time no matter what.

Gog and I are rarely apart. Ever.

He is constantly checking in with me, helping me out, asking how I feel, how he can help, and keeping an eye on me.

When I’m hallucinating he is the person I make myself rely on; if he says something isn’t real, it’s not. When I’m depressed he is the one I am furious at because he keeps me safe, and when I’m manic he is the person I scream at because he won’t let me spend all our money or do anything ‘crazy’.

He puts up with all my shit and does nothing other than try help me as I essentially ruin his life.

He will forgo sleep to make sure I am safe, phone and argue with self-important ‘I-am-better-you’ Doctors to try get me help, and hold me as I cry and try to explain why killing myself would be the best for everyone.

He has been doing this for six years.

I always moan at how hard it is having a carer – I can’t go out on my own unless I am anything other than stable, and only then for no more than an hour and Gog might try and phone me and I ABSOLUTELY HAVE TO answer the phone. I don’t get time alone, blah blah blah…

But honestly, I have fuck all to complain about…imagine what it is like to be a carer.

He works tirelessly for nothing, and whenever I feel irritable it is him that bears the brunt. I have tried to hurt him whilst manic / psychotic when I thought he was a spy sent to kill me, I have had to say to him “please move those scissors from over there, I am scared I’m going to hurt you” whilst he calmly moves everything out of reach…and he is still there for me, he still adores me.

I do not deserve him.

He does what he does because he loves me so much. I FUCKING HATE that I am so horrible to him over and over, and that I have ruined his life…he can’t work, he can’t go out alone and do stuff, if I am in a rough patch so is he by default…I hate myself. But I love him so much, he is honestly the best person on the planet and I am incredibly lucky to have him.

So…this post is just me saying thank you Gog.

Also, thanks to all the other carers out there who look after people with mental illnesses. You probably don’t get much recognition from Doctors, or social workers, or the general public…but know that you’re amazing and the world wouldn’t be the same without you.