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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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Our own language

Quite often, and for long periods of time, I go mute.

I’ve been doing this since I was a young teen. I’d go days without really talking. My friends knew I wouldn’t respond to them verbally, my teachers knew I wouldn’t / couldn’t answer the register in class, and I just wouldn’t talk. I was quiet at the best of times, in class especially, but out of this selective mutism I was noisy and fun-loving with my friends.

Depression would change that, drastically and often, and people accepted this.

The silence has clung with me over the past decade, and even with my partner there will be periods of hours or days where I’ll say barely a word.

Being silent feels wonderful. It feels like hiding under a duvet from the world.

It’s not that I don’t want to communicate with people, especially my partner who I love and trust…it’s more that it’s too much effort, I don’t have the strength, and I worry about every little thing I say. Depression hits me that way.

On top of that there are days where I’m disassociating, days where my psychosis has my tongue tied and unable to get what I want to say from my brain and out my mouth. Most times I can write or type, so we’ve often used that as a way to communicate, but outside is tough.

Over the last year we’ve kind of invented our own language, our own sign language.

We have dozens of words and phrases; two different ways of saying I love you!

We can’t talk easily or quickly, but I can answer questions, ask for things, say yes and no, or tell him I need help.

Not only does this REALLY help me in terms of depression, when I’m just feeling the need to be quiet, or if my brain-to-mouth is befuddled, but it’s great for my paranoia too. I tend to talk in codes when we’re out in public, and my partner often gets confused about what the hell I’m talking about…

I get frustrated at the time because I think I’m being so obvious, and I’m so anxious someone will hear what I’m saying if I don’t make it code. With sign language, we can talk about a lot of things without me worrying, even in public.

And the really great thing is that, as some of the signs are subtle or very hard to interpret, I can make them around other people, family members or friends. Even in the company of others I can tell my partner I don’t feel good or I need help.

Very handy 🙂

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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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I feel like shit

I think it’s around two weeks I’ve been on Citalopram now.

Most the side effects have gone, or at least the nausea has. I still get full after just a few bites of food, I hardly ever feel hungry, and thinking about food (to plan meals) makes me feel ill.

I haven’t had an episode of panic since I started, I think the past four or five days I’ve had virtually no anxiety, and my energy levels have been good…maybe bordering on hypomanic a few times, but nothing major at all.

Psychosis is still the same, which at least means it hasn’t gotten any worse.

Today though I feel like absolute shit. I didn’t take my Citalopram last night because my chest felt tight and I had a big argument with Gog because he won’t let me cook for myself but none of the meals he prepares are in any way healthy, so I said if he wasn’t gonna let me eat healthy I wasn’t gonna take my med, in case it was doing anything to my heart.

Yesterday I was a little irritable or short tempered, but today I feel pretty damn low, and am really pissed off at the world and frustrated with everything.  I just want to sit and scream and cry, and tear my hair out.

I doubt all this was caused by missing one dose.

Fucking furious. Especially because I had been coping so well with so many things, and then the one day I lose it is the day we have a friend coming over…

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Day 6 of Citalopram

Gog here.

I think today is day 6 of Anon taking Citalopram to try help her panic. I can’t say I’ve noticed any improvement in her mood or her anxiety, BUT we haven’t had a day of entire panic since. Hmm, coincidence?

It’s probably too early to tell still, but we can hope.

Side effects include weird sleep (struggling even more than usual to get to or remain asleep, although maybe this was happening before she started the drug and we didn’t notice properly) and nausea. Lots of nausea. And weird having no appetite, then getting instantly ravenous (which she has always done) but then filling and feeling sick after just a few bites of food.

The nausea and the sleep sucks, and what makes it suck more is she has taken Citalopram three different times prior to this, if I remember correctly, and it’s never once given her side effects before.

We have had an immensely stressful week, so I am relieved we are doing as ‘well’ as we are, in that Anon’s mood hasn’t hit crisis levels in either direction and, although she has cried a lot, she is managing better than I could have ever expected.

To cut a long story short we have had several completely unexpected pet deaths, and then the new kitten we adopted less than two weeks ago, well…he has a congenital health issue that is very serious.

We could put him through surgery, but it is immensely high risk. There’s an extremely high chance he would die, recovery would take months and months, and even if he recovered (because what he has is so rare) vets can’t be sure the operation would even help, or be sure the condition wouldn’t just return.

The condition is so rare our vet has never seen it, and none of the vets at our surgery are equipped to treat it, he would have to go to a specialist.

So our options were an operation that would cost around £3000 and could result in our kitten dying or not being at all improved, or return him to where we adopted him from and they would almost definitely have him put to sleep.

This was horrible. Devastating.

After talking with our vet and a friend who is a long-term cat owner, we have decided we will keep our kitten, and just love him and dote on him for as long as we have him.

He is the best cat in the world, and as long as he is happy, we will love him. If his symptoms worsen, or he becomes seriously ill, we will help him cross to rainbow bridge.

 

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A&E, sectioning & medication

What an experience the past 24 hours have been!!!

I phoned the GP yesterday as Anon’s panic is unreal. The GP that called back was the bloody Doctor who said “what do you want me to do about it?” one of the other times.

He basically said there was no way to prescribe Anon medications at all without seeing her. When I again said the reason we can’t see anyone is because Anon is so scared, and so we need something to get her to the point where she can attend an appointment, he said there was nothing he could do.

I asked about a home visit, because GP’s (unlike the psychiatrists or social workers in this area) WILL do home visits. He said he could do that, and someone would let us know within the next few days when the home visit would be.

I then asked if we could have a female Doctor come – he said we would get what we were given unfortunately. Bullshit!

As soon as I got off the phone, Anon had a panic attack and said she couldn’t do a home visit. She already had a day of immense panic and terror yesterday, and as ever appointments made it all worse.

I did my best to calm her down and said we’d find another way around it.

I called 111 early afternoon and spoke with someone who was very helpful. He said there should be a way that a Doctor can prescribe medications without seeing Anon, and where we can wait to see if the medication helps, and at that point we should be able to attend appointments again. He advised me to call 111 after 6.30pm, as there would be more GPs working who could give accurate advice.

I called 111 at about 730pm, and spoke with the first initial assessor (not a GP, not a nurse)

When I answered the questions and tried to explain the situation – which took about 25 minutes – she wanted to send an ambulance out to bring Anon to A&E. WHAT?!

Apparently her panic counted as an ‘immediate emergency’ (despite the fact Anon has struggled with this for months and months, and every GP / social worker / Crisis Team we have spoken to haven’t cared!) and because Anon’s heart was racing (due to her anxiety about the phone call!!!) she needed to go to A&E!!

I very calmly but firmly argued her down, re-explaining that going to appointments and medical facilities terrifies Anon, because of our last experience at A&E. Forcibly taking her to A&E when she’s incredibly anxious and you’ve already mentioned sectioning her is a absolutely stupid idea!

This went round and round a few times, and eventually she sighed and said a nurse would call me back. Ten minutes later I got the call, and the nurse was a little better. She understood that it wasn’t an emergency situation with the need of hospital/sectioning, but she didn’t really understand that I was phoning for advice, and NOT for immediate help.

I was then told a GP would call me back within a few hours. It was already 10pm by this point, and we were tired.

We waited for half an hour, and I talked to Anon about it, and we decided they clearly weren’t going to understand the situation. They weren’t going to offer advice, and they were going to continue as if it was an urgent situation – the threat of sectioning is always in their power.

I called 111 to say I wanted to end my interaction with the service. I had to answer the assessment questions about Anon yet again (third time in three hours) and the person then spent fifteen minutes telling me over and over (and getting increasingly aggressive) that I should get a phone back from a Doctor in case I needed urgent help, Doctors know best etc.

I kept saying ‘no, you’re not understanding, this isn’t an urgent situation – I only called for advice!’ Eventually they said I was off the system, and they ended the call.

Today I called the GP surgery and cancelled the home visit, asking for a call from a GP.

Talking to the GP I explained very clearly what was wrong, what was happening, what could be done to fix it, and how I’d spoken to someone via 111 who said it should be possible.

I said we could bring in written consent from Anon, and she could check her blood pressure on the machine the public can use in the waiting room, if those were things that could prevent Anon getting medication with no physical appointment.

The GP was actually very good this time, and said he could see where we were coming from but it would be hard to get medications with no appointment. I said he had seen Anon several times when she could make it to appointments, so he HAD seen her before, and he had seen her when she was very much struggling too.

He then said he would prescribe something but wasn’t sure what. He said he would prescribe benzodiazepines, but wasn’t comfortable about their addictive quality and they were only short term.

I said I understood that, but from what I had read on the NHS website, SSRIs are usually used to treat GAD / panic disorder, and they are prescribed for long term use. Anon had been on Citalopram many times in the past for long periods of time, so could we not try that?

He said that was a good idea. He was happy to do that, apart from the danger of a manic episode. I said I’m with her 24/7, she’s been on Citalopram before and never went manic, and if I saw any symptoms of mania I would get in touch.

After all that, we have a prescription for Citalopram 😀

The GP asked that I book an appointment to see him in a months’ time, but that if Anon is still struggling at the time, we can cancel and push it further back.

It was a lot of stress and a lot of effort, but I am so relieved to be where we are, and I really hope this medication can help reduce the panic just a little.

WOW, sorry that was so long!