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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.

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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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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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Psychiatrist ignores GP too!

Gog here.

Since the mania broke and Anon fell into a lovely, surprisingly deep, depression we have been struggling.

I don’t know which was worse, the mania or the depression…both can result in Anon harming herself.

Anon struggles more with the depressive side, maybe because these episodes are so common and long-lasting, but also because when she’s manic she has energy and can actually DO things. When she’s depressed even the smallest things sap a lot of her energy.

Earlier today (feels like yesterday to us as we’ve just had a 4 hour sleep!) I phoned the GP to ask for an update after the emergency appointment.

The appointment was only two days ago, but things are bad enough that I wanted to see how it was progressing & get across how urgent it was. Guess what the receptionist said after checking the system?

The GP has tried to get in touch with the psychiatric services to ask for a progress report on getting us an appointment with a psychiatrist, and they haven’t picked up or got back in touch.

The GP has tried to get in touch with them every day, and left a message saying please get back in touch as a matter of urgency. They haven’t.

Anon has said she is having flitting thoughts that suicide is the answer…I guess her previous blog shows that. I’m having to watch her carefully, and am trying very hard to be supportive, gentle and remind her of all the great things we have. She has responded well to this today and a few times has actually enjoyed herself. Better than yesterday!

Our sleep is messed up.

Anon has gone from sleeping 4 hours a night to needing at least 10 hours. We just woke up from a 4 hour sleep and forced ourselves out of bed…hopefully we can fall asleep around 3am and then get up at a respectable time.

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When you need help

and can’t get it anywhere.

* so anxious I can’t concentrate on anything and have to fight so hard to pull the shutters down so I look normal to everyone else

* sitting statue still with tears rolling down your face and replying one syllable answers in a neutral tone

* there’s a microchip behind my ear theres a chip behind my ear there is a fucking chip behind my ear under my skin

* my head is loud it is so loud there’s so much noise inside and out. You can’t talk like this, you can’t concentrate like this.

* people don’t believe me, they’re not listening. I’m already anxious because of it but being told it’s not real is not helping. I feel like I am on the verge of full blown hysteria. Time to sit very still and be blank.

* Thinking days from now or years from now one of us will be ioll, I will have lost Gog; he will have lost me

* the things are back, that move. The animals or the blackness. In the corners, they hide.

* I am being watched

Terrified does not come close. but who can help? I won’t use crisis team i only have the gp and they can’t do anything.

 

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You don’t say this to someone who is ill

This is a joint post, we are both forming it. Anon will write in italics, and her carer will write in bold.

We don’t know why, it’s just how it turned out 😛

As our previous posts show, things have been incredibly difficult here.

Anon is hallucinating, depressed and openly suicidal. Alongside this shitstorm we have had a ton of other issues pop up…repair work needed for the house, our bank cards breaking (meaning we’ve been unable to pay for anything) and needing to travel to a bank to sort it, money stopping being paid to us for no reason and, especially, one of our dogs developing a behavioural issue meaning she can’t be left alone.

Long story short we’ve been feeling like shit, and I wanted to phone my parents and talk to them, talk things through and get their support…this was not meant to be.

Sometimes my parents can be supportive and understanding about the difficulties we face, but other times when I try to talk to them about my illness they ignore me (anything I say is followed by several minutes silence), change the subject (to ANYTHING) or simply say over and over “aw, that sucks.”

Not helpful, especially when you clearly don’t mean it and aren’t listening -__-

Anyway, on this particular phone call Anon was again trying to get them to understand how much she is struggling at the moment, and was also trying to talk about the reality that we might have to rehome one of our dogs. Not because we don’t know how to work with her issue, even though it is difficult and time consuming, but because Anon is not well enough to do so. Currently we can’t leave the house, and we need to leave to get Anon help.

Anon’s dad responded to this (and they have known we may have to rehome our dog for several weeks now) with, “What? Give over.”

Further into the phone call Anon’s mum stated that Anon should not own pets because she is mentally ill (I’d just like to say that Anon is a fantastic pet parent and goes out of her way to give any animal that lives with us the best life possible).

This is preceded by a long line of shitty advice I’ve been given by my parents, such as:

–> to try harder and add more strings to my bow

–> that everyone has ‘down days’ but they all manage to pull themselves out of it (SHE HAS SEVERE DEPRESSION DUE TO HER BIPOLAR >__<)

–> she knows the hallucinations aren’t real so they’re not a big deal (sure, she knows they’re not real when I talk to her and reassure her, but she finds them terrifying)

–> that my illness is ‘just a phase’

–> that I just need to get over my fear about the (seriously scary) medication side effects, my mum has asthma and she’s had to take strong medications before

(newsflash it’s not the same when I would be on them for years, almost every single one has weight gain as a side effect, none of the ones I’ve tried have helped and some have life-changing [potentially fatal] side effects!!)

–> way back when we first started dating, a CPN suggested I keep a star chart for Anon to show her ways she was doing well (eg. she gets a red star for eating meals [she had an eating disorder at the time], a blue star for taking her medication etc)

Her parents didn’t say anything at the time they saw the chart, but later emailed Anon saying “he’s deciding when you can be happy and when you’re not.  It’s not pleasant for us to see”…uh no, Anon had such low self worth she didn’t think she could do anything right, and I was trying to help her see how amazing she was in the tiniest of ways…

 

All wonderful examples of what not to say to someone who has such a debilitating mental illness or, let’s be honest, ANY mental illness!

I used to be terrified of my parents.

I couldn’t talk to them about anything serious because they didn’t help me when I needed it as a young teenager, and they were always aggressive. Now they have way, way less of a hold on me, and I am not afraid to argue back and tell them to piss off when needed.

Even so, the things they say still hurt her. Being told she shouldn’t have pets (when she puts hours into our dogs everyday) was ridiculous.

Sorry for the confusing layout, this is more of a rant than anything because I’m annoyed. Of course I love them, but people you love can still annoy you!

 

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So many emails

Anon’s carer here.

Things continue to be the worst they have ever been, although Anon doesn’t seem quite as desperate today.

So many hours over the past week has been spent with Anon crying hysterically, it has been very distressing. I’ve spent the last few days emailing everybody I can think of (Mind and other mental health charirties, CAB) asking for advice and information about various things.

The charity Bipolar UK really helped us last time Anon contacted them, and gave us lots of really useful information. I’m hoping they can help again.

I’ve been looking into advocacy, to support us at appointments. Anon is not in a good place  for appointments, and even I can be intimidated by Doctors and Social Workers, and find it hard to tell them when they are wrong, or not understanding the situation (which happens all the time).

It would be really helpful if we could get an advocate to talk to us beforehand, so they knew what we were going through and what we want, then sit in appointments and help speak up against the Doctors.

I think it might help Anon feel more secure, but I’m not sure if we’d qualify for an advocate or how to get help from one.

Just waiting for about a dozen email responses…

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Hello Doctor, it’s me again…

Tomorrow I’m phoning our GP again…he’s going to be sick of hearing from me.

I’m going to ask if there would be any way he could either be there with us at the appointment for the psychiatrist, or if the psychiatrist could meet us at the GP surgery. Or what about having a video chat with the psychiatrist in the Doctor’s room?

The issues with the appointment with the psychiatrist is going to be:

–> We will get the letter in advance, which means more time for Anon to get stressed and work herself up over it (that seems to be belittling the problem, she won’t just be ‘a bit stressed’, she will be flat out terrified)
–> The appointment will be with a psychiatrist that Anon hasn’t met before and we don’t know anything about them, unlike with the new GP where we fished about for the most gentle and understanding Doctor
–> The appointment will be in an environment where Anon is going to be extremely uncomfortable, either an entirely new place or somewhere with bad associations
–>A GP appointment lasts around ten minutes, whereas a psychiatrist appointment usually lasts at least 45 minutes, and sometimes longer than an hour

I don’t know what is possible, or what they’d be willing to do, to make things easier for Anon…but surely something has to be possible?

Things seem to be going to shit left right and centre at the moment.

As Anon would say, “it never rains but it pours.”