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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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Panic & dissociation

My anxiety and panic has crept up recently.

I’m not at extreme panic I-have-to-die-immediately stage, but I have moments where my heart races and I feel very scared and just worry about everything. Or moments where I’m fighting off a full blown panic attack and I don’t know why.

I was out on my own yesterday walking our youngest pup, and had this horrible insistent ‘know’ (across between a fact and a voice in your head telling you it’s true?) that absolutely everybody was staring at me, talking about me, following me…not helpful, not nice.

Called the walk short and as soon as she’d done both toileting we fled back to the house, where I spent the next hour fighting tears and a panic attack.

Yesterday or the day before, my partner was out collecting food and I started dissociating. Completely out the blue and badly. When I ‘came back’ my pup was on my lap craning round to look at me, and I was stroking her back repeatedly. Bloody love that dog.

Does anybody else dissociate in different ways btw?

Sometimes it’s like a blackout; I’ll have no idea what I’ve done or where I am when I ‘wake up’. I’ve come to walking in the middle of a field before and not had a clue where I was.

Another time I was walking our Collie cross a few days after a ‘blackout’ and saw lots of my underwear and socks scattered on the ground – apparently I’d done that whilst dissociating, god knows what anybody who saw me thought!!

Then I have one where it feels like I’m not in control. This one causes a lot of panic because I’m walking, talking and acting almost totally normal, but it’s not me controlling myself and it scares me because nobody else notices. I want to get across that someone has control over my body but can’t.

The third is where everything is in slow-mo and I have to fight hard to move and talk. Sentences can take a full minute to say and words get muddled.

I don’t know why I have different episodes, or what triggers what. The blackout’s by far the worst as I remember literally nothing from it…I have no idea what I got up to and obviously don’t know when it’s happening.

It really, really scares me thinking about what I could ‘wake up’ to.

Sometimes I start writing a blog here and it suddenly derails and evolves into an entirely new topic. That’s what happened tonight, I didn’t even mean to write about dissociation 😀

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It’s fine UK, there’s no need for ESA or PSD…

I’ve moaned many times how disgusting I think it is in regards to assistance dogs and psychiatric illnesses in the UK.

From anyone outside of the UK, especially those in America, let me explain:

  • In the UK you CANNOT get Emotional Support Animals, that is animals who are classed as being comforting to their owners, and are allowed in ‘no pet’ housing, and usually on planes. We don’t get that in the UK, ESAs don’t exist here.
  • On top of that the UK does not allow psychiatric service dogs (/psychiatric assistance dogs). Physical disabilities mean you can qualify for an assistance dog – which is the same as a service dog in that it is trained do tasks to help the handler, and can also legally access anywhere; cinemas, restaurants, shops etc – but there is nothing in place for people with mental illnesses to have a service dog.

I’ve talked before about the various ways a dog could help people with a mental illness. Here’s a quick recap:

  • Body blocking; sitting in front of handler to prevent people getting close
  • Circling; as above but the dog moves around the handler
  • Interrupting behaviours, be they alerting to anxiety (eg. trembling, jittery legs) or interrupting self-harming behaviours
  • Comfort and DPT
  • Bringing items – medications, mobile phone etc
  • Retrieving help from other people in the house, if handler is in crisis

And of course a dog’s presence out in the world and in the home can be very helpful to someone suffering from a psychiatric illness too.

That’s just a very brief list of a few ways that a dog can help, off the top of my head.

Quite frankly it is absolutely ridiculous that the UK does not acknowledge the fact that there is a need for assistance dogs for those with mental illness, and that sufferers could benefit hugely from this.

I’m writing about this because our recently adopted dog, a Chihuahua x Dachshund who had been abused the first 7 months of her life, has completely changed my life.

She started off as a trembling wreck, and it was weeks before she would come to us for contact and we could stroke her. It was months before we could walk her other than to just take her to the toilet, and weeks after that before she stopped trembling when people walked on the opposite side of the road to us.

Watching her grow in confidence has been a beautiful experience, but she has brought so much love into my life…she’s my little shadow!

And thanks to her, for the first time in months, I am able to go out on my own, to walk her.

True I don’t go far from home, I’m only ever out for about forty minutes…but for me that is HUGE! I have found training her phenomenal – it motivates me, it makes me feel useful, and it gets me thinking. Focusing on her during our walks is extremely helpful; it means I don’t give into the paranoia / psychosis regarding other people we see out and about, and when she reacts to noises or people, it shows me they are real.

I now take her most times I leave the house. She walks with us and, when it’s too busy for her (because she’s nowhere near bombproof, she’s still learning to trust the world) I have a dog bag that I can carry her in, and that’s wonderful too as the physical contact is very calming.

With her I have walked through town four times (it was something I hadn’t been able to do in months), I’ve ridden a bus, AND walked around a supermarket carpark as my partner went inside to buy things. We walked about and did training, and there was such little anxiety on my part…the supermarket used to be such a huge trigger for panic attacks!!!

Case in point, I’ve just come back to this blog several hours after beginning to write it, and it’s been an awful several hours. I was sat here crying, and my dog comes and sits on my lap, and I stroke her and cuddle her and s-l-o-w-l-y start to feel just a little better.

So here’s what I’m doing.

I, and a small minority of other people in the UK with psychiatric disabilities, are training our own dogs to perform tasks and help us both out in public and at home. Now obviously these dogs, stupidly, won’t have the same rights as service dogs – but they will help us.

We need to buy vests and patches, that state our dogs are working and are not to be disturbed, because just like registered assistance dogs, our pups need to focus. It’s critical they aren’t distracted by people trying to pet them, because they are doing an important job and they are saving their handlers’ life everyday.

I’ve been doing a lot of work with my dog, Pixie. We are at the very, *very* beginning of our journey. We are working on heel and focus, sit stay, down stay, watch me, settle on me, interrupt behaviours, under (go under my legs as I’m sitting on a chair) and her starting in the right position.

farmfields20

This is just the tip of the iceberg in terms of training.

Most physically disabled handlers that have assistance dogs have a lot of help training them. I have nothing. Thankfully I’m fairly experienced with dog training thanks to my other dogs, and I know about behaviour, clicker training, shaping, luring etc. I’m at an advantage but it’s still a looooong road.

And after all the training, and after all she helps me, we still won’t have any more rights than your average untrained pet dog :/

But worse of all is being called a faker.

There seems to be articles published weekly about ‘fake service dogs’ (that is, service / assistance dogs that aren’t registered), and how disgusting their owners are, sticking a vest on their untrained unruly dog just so they can get them into places and can take their dog with them wherever they go!

Hatred comes from newspapers and handlers of service dogs alike, and I can understand how incredibly annoying it must be and how damaging fake service dogs can be when they are out of control – they must give businesses a really bad impression! – but not all unofficial service dogs are out of control, and their handlers aren’t always doing it for malicious reasons.

My dog really helps me. She means I can leave the house and go to busier places without suffering a panic attack or triggering an episode. She helps me when I’m at my worst. I am not calling her an assistance dog because I ‘want to take her places’, I’m calling her an assistance dog because SHE IS ONE, I just can’t register her!!

With most assistance dogs, the handlers get lots of help training them – in fact in many cases the dog is completely task trained before given to the handler.

Obviously when I don’t qualify as having a disability that could benefit from an assistance dog, I’m not going to get a pre-trained dog! So alongside the difficulty of everyday living, I also have this huge task ahead of me training my dog. From scratch.

In addition to basic obedience (sit, down, stay, recall, loose lead walking) there are so many extras we need to work on to the point where nothing could distract us:

  • Be able to walk past any person/s without showing any interest
  • Be able to walk past any dogs without losing focus
  • Be able to be calm and focused around all other animals – cats, squirrels, sheep, rabbits, at zoos, farms etc
  • Be able to remain calm in any shop (pet shop, shops selling food at ground level, shops full of shopping trolleys and screaming out of control kids etc etc)
  • Not only be able to remain calm in that environment, but to focus on tasks too
  • Ride on public transport whilst remaining calm and on point; this involves things such as…
  • Ignoring people
  • Getting used to the noise and motion of transport
  • Learning tuck / under (sit out the way) and other positioning
  • Be able to hold a down stay the entire journey, no matter the distractions
  • Be able to ignore all the utter morons who try stroke service dogs, pet them, call to them, bark at them etc
  • Be able to cope with automatic doors, elevators, shopping trolleys, check outs, intercom messages, ignore dropped food etc
  • Learn all the behaviours you want your dog to be able to perform – DPT, interrupting various actions, blocking by positioning body in way of other people, circling, fetching items etc etc etc

It feels VERY overwhelming.

Most service dogs trained by professionals have 12-24 months training, who knows how long it will take us?!

I’ve really enjoyed our training so far and I’m so incredibly impressed with my pup. I have this awful tendency to expect too much from my dog, and get frustrated with her when she ignores something I’m asking – even though 99.9% of the time it’s MY fault, because I’m expecting too much too soon!

In the 3 months we have had this dog she has changed my life so much. Now that I take her almost every time I leave the house, my anxiety has fallen right down, and even when I’m struggling with my mood or psychosis, I’m better able to cope. In the house I’ve had a lot of panic attacks, moments of intense sadness, crying etc – and every time she has helped me, and calmed me down, and got me back on track.

I can only imagine how much she will help in the long run.

This has been a really long, jumbled, messy post. My head’s quite messy at the moment and I’ve been writing this post for the past two days, so it’s all…weird. And it’s 5.30am in the morning, I can’t sleep, so obviously that’s a great time to edit and post it XD

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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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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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Living the dream!

For the past five years I’ve had short hair. No matter how hard I tried to grow it long, I couldn’t, because when I was manic I’d shear it all off.

My partner could watch me 24/7 to try and prevent it (and I’d ask him to when I wasn’t manic because I really wanted long hair!) but manic me would always find a way to chop it off – when he was in the shower, sleeping or even on the loo!

I want to grow my hair so desperately because I love wearing it in different styles, brushing it and tying it up. I love dying it bright colours and wearing plain clothes so it seems even brighter.

It was annoying having me ruin my plans over and over again!

In more recent times I shaved all my hair off due to psychosis, as short and close-to-bald as you can get. And I haven’t been able to grow it back…too much mania, too much psychosis. So I was stuck with really, really short hair!

I don’t know what made me think it, but I recently thought I could try wigs.

I don’t mind having short hair at all, I quite like it, but I hate going out in public with my head uncovered because you get a lot of stares, shouts of ‘are you a girl or a boy’ etc.

Now I know I don’t hardly ever post photos of mysel, but I ordered two wigs recently, both very brightly coloured, and one arrived today. I LOVE it! 🙂

I feel much more confident and comfortable in my own skin now ^__^

It was a really cheap fancy dress wig, because I wanted to see if I would be comfortable wearing a wig, and if there was even any point trying to wear a wig. Because it’s so cheap you do have to wear a headband or hat with it if the hair is tied back (otherwise the netting shows through the hair) but I have no problem with that…I really love it 🙂

colour

I hate this photo but you can see all the colours 🙂

So not only can I actually have hair, but I can take it off when my psychosis is causing issues and wear lots of different hair styles, lengths and colours!

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I’m so tired

I’m so tired of fighting. The constant changes are exhausting and horrible.

My partner turned to me in alarm this evening and said “What’s going on with you sweetpea? You’re flitting from happy to sad so quickly.” I replied, completely expressionless, “I’m bipolar, what do you expect?” Which at least is amusing, even if that isn’t what bipolar is at all!

My partner was dot on though. I’m so tired from yo-yo’ing and having to deal with super fast switches of energy and impulsiveness, happiness and sadness, confidence and hopelessness.

I’m tired of trying so hard to focus, on ANYTHING, and it being such a struggle because all I can hear is things that aren’t real and I know, I *know*, that there’s something sat watching me at the other side of the room – but don’t look, DON’T LOOK, must appear normal.

The other day two noisy things played at once on our computer, a game and some wrestling my partner was watching. The noise immediately drove him to distraction and he raced to the volume to mute it whilst he got it sorted. He literally couldn’t cope.

Grinning, I said “Now you know what auditory hallucinations are like!”

Although it was a joke, it was true. Fighting so hard to concentrate, understand what people are saying to me or what I’m reading or watching, AND trying to appear normal is just…exhausting. And impossible.

Please world…just give me some stability. Just give me some moods that don’t rate 10/10 on the richter scale. Just give me something.

Again, anybody reading, please don’t tell me that things ‘will get better’ or that I should ‘go see a professional’. It won’t help, even though I know you mean well, and will just make me feel more hopeless and alone. Thank you for your understanding.