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Ugh. Ugh. And ugh.

I have had so many seizures today.

I think this has been my worst day, ever, for seizures.

The morning was fine, I was in a good mood and we had an awesome walk to the beach with one of our dogs…then it all went downhill from there >__<

I had a huge spurt of seizures, over half a dozen complex partial seizures and then a huge big one where I lost consciousness. And of course that was whilst my partner was out the house, which is scary in itself AND I dropped and damaged my laptop. God damnit.

Then I felt extremely sick and was sluggish, slow and spacey headed for hours and hours and hours afterwards. Couldn’t function well at all. Food helped a little, but my head wasn’t right the rest of the day.

Then late at night my head got worse again…I had about eight complex partial seizures, another big seizure, then my body was slow at coming back…I could move my eyes but couldn’t move my hands or talk, for about 45 minutes I couldn’t talk at all as much as I wanted to, then I had another big seizure.

This FUCKING SUCKS.

I hope tomorrow is better. Yesterday was great, I had a few partial seizures and that was it…so damn unpredictable ūüė•

Finally, we have a bit of an announcement…. *drum roll*

We are getting a fourth dog, and our fourth dog is going to be an actual official seizure alert and assistance dog. He will come from a very good breeder, with sound dogs that are all health tested, and I will be working with a nearby training facility and later a company that trains assistance dogs.

From there we will do our public access test, and I will have a dog that can come with me everywhere…he will alert me to seizures, ground me during seizures or dissociation, interrupt behaviours, alert to panic and anxiety, and block me from members of the public. Oh, and because he will be able to come to medical appts, I will be able to go to appts again!!

Yaaaaaaaaay ^__^

We have a Go Fund Me campaign, so if anybody could share this on their social media that would be so helpful…and if anyone wants to donate that would be absolutely amazing but please don’t feel you have to at all!

Thank you from us!

lovepup

 

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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 ūüėÄ

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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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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.

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Today’s a struggle

Everything is weighing me down.

My mood, psychosis…just when I think I’m doing so good, the *tiniest* amount of stress tips me over the edge.

Today I was bobbing between ‘just about coping’ and ‘struggling significantly’, then I started trying to work out what to do about my dogs’ harness…and even though it shouldn’t have been stressful, even though it wouldn’t have been stressful in the slightest to most people, I hit the end of my tether.

I’m tired, tearful, and hallucinating…as ever. I’m feeling very panicky and pretty sure I’m starting to dissociate. And I’m on my own…lucky our foster pup is with me, just keep her close, it’s all fine.

I wish things were a little easier.

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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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Doubling the dose

Gog spoke to the GP yesterday and the GP suggested doubling the dose.

I’ve gone from 20mg to 40mg. Back on the highest dose of Citalopram for the second time. Last time was for depression though, this time it’s for panic / anxiety.

I hope it helps alleviate some of this anxiety again, as it’s creeping higher every day…

My psychosis has been absolutely terrible coming up to a week now, and it’s really taking it out of me ūüė¶

I’m really tired of questioning everything and jumping at things nobody else sees. I hate when the world feels this scary.

This morning I woke up and couldn’t figure out which memories were real at all – alongside hallucinations and very vivid realistic dreams, I feel like I’m drowning in a reality that isn’t real…