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Knots

My life is a tangle of various chronic illnesses.

A few weeks ago my seizures were atrocious, and my psychosis was incredibly difficult to live with. Then I had six days with minimal seizures, and during this time my mood was incredibly low and I spent a lot of time crying and hating myself.

Yesterday my seizures started up again. I had over a dozen yesterday, I had a few this morning and then starting around lunch time I’ve had absence seizures at fairly regular intervals for the past three hours.

In the background, as ever, there’s the insistent pressure of anxiety.

Ugh. Tired of this. Was really hoping my seizures would stay low until after Christmas, but it’s not looking that way. I’d love to have a nice seizure-free Christmas and be able to remember it!!

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Bad day turned good

Today has been bloody intense!!

I had seizures in the morning, and all day my psychosis has been terrible. On a dog walk passing through a quiet cul de sac I happened to see an old woman in her house sitting on an arm chair, and behind the woman I saw what I can only describe as a monster.

The monster looked human-ish; it was behind the arm chair leaning over the woman and muttering in her ear. It had really really long, skinny arms, a long neck, and very long pointed teeth. Obviously the woman couldn’t see it and was completely unaware of it whispering in her ear.

It was awful. I stopped walking and freaked out big time, I felt terrified.

I tried to do the ‘real or not real’ game with my partner, where I ask if he can see it and have to try and force myself to believe what he says, but it was extremely difficult.

At home was better. We had a puppy training class for my assistance dog in training this evening, which I really wasn’t in the mood for but we had to go as we’d already missed three weeks.

90 minutes before we had to set off I had another seizure, and fell asleep exhausted afterwards. My partner woke me up 15 minutes before we had to set off, and I felt awful – really nauseous and just horribly ill!

I almost cancelled, but in the end decided to push through it, and I ended up feeling much better within 15 minutes and our pup excelled at class – yay!

So, that was my day. I honestly think that’s one of the worst hallucinations I’ve had, up there with a child kneeling in the middle of the road as our friend was driving and another time a child stood covered in blood was standing next to the car window. Scary days…

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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 😥

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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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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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!

colour3

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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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Just let me know what you’re doing, brain…

One of the things I’m struggling with SO DAMN MUCH at the moment is the unpredictability.

When I had severe bipolar I thought it was the worst thing ever.

Months and months of suicidal depression followed by weeks of psychotic manias, on repeat, over and over. I really thought it was the worst.

But I’m struggling even more now that my mood swings aren’t predictable and don’t follow a pattern. Alongside the constant psychosis (which is really, truly awful. Like living in a horror game) I now have extreme mood episodes that last just days.

It’s exhausting and confusing and upsetting.

It makes planning days impossible – what we might have wanted to be a nice relaxed indoor-day can’t be because I’m bouncing off the walls and if we don’t go out I’ll do something ridiculous.

Day visits with my parents have to be cancelled because my psychosis has reduced me to tears. Plans for enjoyable walks with my beloved partner and dog in the countryside abandoned because I’m so depressed all I can think about is suicide and I can’t leave the house.

I’m talking a day or two so manic I don’t sleep. Maybe a week where all I suffer is psychosis, constant, LOUD psychosis. Then depression where I can’t imagine, and don’t want to, living like this anymore. Then psychosis. Then depression or mania or more psychosis.

Yesterday and the day before I was manic. Can’t-sleep-spend-money manic. Today started okay. I felt a little off but I think I had a med-head or a psychosis overload. Late this evening I noticed myself getting panicky and sad and anxious.

The feeling got worse and more extreme. I had a panic attach. I freaked out.

There’s this tight feeling of overwhelming dread inside me. I’m struggling to breathe normally and behave normally and look normal on the outside. I can’t talk about this with my partner and I don’t 100% understand why.

I’m scared and trapped and oh so sad and numb and blank. I feel so completely overwhelmingly depressed and hopeless.

I could tell myself to just wait until tomorrow, because how I feel is changing almost daily now, but everything I switch between is horrible.

Mania – frustration, a frantic need to move and talk and beand zero need for sleep.
Depression – hopelessness, numbness, despair.
And psychosis – voices, scary thoughts, scary people, visual hallucinations that are all real, so so real.

This is all I get. This is me, this is my life.

Please don’t anybody advise me to go see a professional, or that things will get better. I know you mean well, but neither would be very helpful or appropriate right now. Thanks for your understanding friends.