Me, Myself and PDA

Hello, my name is Julia and I’m an adult living with a diagnosis of Pathological Demand Avoidance (PDA). I also have a diagnosis of ADHD and Psychotic Episodes. PDA is a lifelong Pervasive Developmental Disorder and was first described by the late Prof. Elizabeth Newson in 1980. PDA is an Autistic Spectrum Disorder (ASD). Despite PDA being older than me (just) there are still massive gaps in its recognition, peoples’ understanding and its diagnosis by professionals. I’m one of the lucky ones and this is my story…….

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PANDEMIC CHRISTMAS, PART ONE

Posted by juliadaunt on December 21, 2020
Posted in: ALL POSTS, LIFE IN GENERAL. Tagged: ASC, ASD, Autism, autism spectrum condition, autism spectrum disorder, Autistic spectrum condition, Autistic Spectrum Disorder, Awareness, Pathological Demand Avoidance, PDA, PDD, PDD-NOS. 1 Comment

What has 2020 and the pandemic taught me…..the year we spent on pause……

Even though this year has been such a non-starter for many and the worst of their lives for others I’m feeling pretty upbeat and positive as we approach Christmas and the new year. Yeah, I know I must be mad right! But seriously 2020 hasn’t been all bad……

The new year started well when a friend took myself and Paul to see Swan Lake. It was the first ballet that Paul had ever seen and he was very impressed. We planned more but then covid landed. Maybe next year huh? 👍

At the end of January I was honoured to be a co-organiser of the first PDA conference in Bristol focusing solely on adults. It was the first event of this size that we’d organised and not to sound big headed but it was bloody good and well attended. Feedback was extremely positive. We had hoped to hold others but yep, covid landed. 🙄

So then lockdown came and put a hold on my training but it’s only on hold. 😷

Oh yeah I had tickets to see Keith Urban in May. The first time he’d been to the UK in 13 years but damn it: cancelled. 🥺

I thoroughly enjoyed lockdown if I’m honest. It was just the break I needed. Meeting cancelled and moved to online formats like Zoom, dentist appointments cancelled, parties cancelled. Unexpected visitors, social norms and feeling like I must take part in things all became a thing of the past. I’d even go so far as to say that I was a little disappointed when the first lockdown ended. Don’t get me wrong I’m well aware that covid is a hideous little virus that has snatched so many away from their loved ones. My heart goes out to all those who have lost this year. Be that a loved one or financially. 💜

June was Paul’s 40th birthday and in true resourceful PDAer style I made sure we celebrated regardless. I organised a socially distanced garden party, complete with individually wrapped sandwiches and party games! Okay, it wasn’t what I’d originally planned for him but we made the best of things and still had a lovely time with good friends. Sadly family couldn’t be there in person due to lockdown rules but we called them so they were still part of it. 🥳

Ruth Fidler and I used lockdown spare time wisely and cracked on with the book, which we finished by the end of summer, and it’s now in the capable hands of the publishers. Release date is August 2021!!! 🤩

October really wasn’t my month. I fell down the stairs at home and broke my arm and had minor concussion. Then the very next day my dad passed away. October really took a lot of effort to get through. We had my mum to stay though as Paul took her to see my dad before he passed. Don’t nag, we formed a bubble. It was good having her here when we got the news that he’d passed. We were able to support each other. 🖤

November brought another first for me: a funeral/memorial service held over Zoom. It wasn’t the send-off that we would have chosen for dad but it was well attended and we were able to share memories of him and say goodbye. 🌈
November wasn’t all sadness though. Paul and I held the Christmas craft/gift auction in aid of PDA Society and raised an incredible £1,222.89!!! This is the 5th year we’ve held the event and it just keeps growing. We’ve raised well over £5,000 so far! We can’t wait for next year! 🎁
Oh and we can’t forget Paul’s operation at the end of November. It was traumatic but he’s healing slowly and doing well. 💜

So it’s now a week before the big day and I’m feeling positive and I’m looking forward to our Christmas of just two….well four if we include the cats. 🥰

I’m nowhere near ready for it though! Still got decorations to put up and presents to wrap! 😬 I’m very much a last minute person. Not by choice I should add, it’s just how my brain is wired! 🤣 I’m a bit hindered by my broken arm but thankfully I have the wonderful Paul to help! 🥰

So I sit here listening to Christmas music, writing this, surrounded by mess and I don’t think I could be happier. I truly am blessed. 🥰

I want to take this opportunity to wish you all a very merry Christmas (or whatever you believe) and my heart goes out to those suffering. I’m optimistic that 2021 will be better and brighter for us all. Be kind to each other and stay safe. 🎄

(Selfie taken last Christmas Day)

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ISOLATION HEAVEN

Posted by juliadaunt on April 11, 2020
Posted in: ALL POSTS, LIFE IN GENERAL. Tagged: ADHD, Adult PDA, Anxiety, ASC, ASD, Attention Deficit Hyperactivity Disorder, Autism, autism spectrum condition, autism spectrum disorder, Autistic, Autistic spectrum condition, Autistic Spectrum Disorder, Awareness, Mental health, Newsons syndrome, Pathological Demand Avoidance, Pathological Demand Avoidance syndrome, PDA, PDD, PDD-NOS. 3 Comments

So tomorrow (Sunday 12th April) marks 3 weeks since I last left the house. I’ve not even been in the garden and do you know something – I’m loving it! 🥰 I know I shouldn’t brag but this isolating malarkey is actually my idea of heaven. I’ve had all social demands removed, good and bad ones, and I’m no longer expected to attend things like dentist appointments. My world has shrunk massively and at the moment I don’t mind at all. I’ve also had to make very few changes to my home life. I’m pretty much in a bubble and I like that. My home has always been a bit of a bubble but more so now.

You see I’ve always worried about germs and counted days since I might have last been exposed to something contagious but I don’t have to do that so much now as I’m not attending meetings or socialising. Lovely.

I’ve also always washed my hands when I get home, just in case, and I’ve always been mindful of who might have touched something before me. I’ve certainly never directly touched toilet flushes, door handles, hand rails or buttons when I’m out! Hand washing is second nature to me.

I’ve also been practicing social distancing when out for years! 🤣 I don’t want people to get the wrong idea and think that I don’t enjoy socialising and meeting friends – nothing could be further from the truth actually. I love being around people and attending social events but it takes a lot out of me. An easier way to explain it would be to imagine for a moment that PDA is a physical condition that limits the amount of energy I have. Instead of it taking physical energy though, socialising takes a lot of mental and emotional energy out of me. I love it but can’t do it for long or very often. Before Coronavirus I did often have to make excuses but now that is removed. Thank goodness for social media. Might be a different story if I didn’t have that!

When the virus hit I had already booked 3 weeks of food shopping as I always do so we’ve only just been affected by the chaos in getting a food delivery slot. I couldn’t get one for this week but Paul was able to collect some bits from the local farm shop donning his gloves and mask.

Paul’s farm shop selfie!

I’ve also bought enough food and “stuff” to last us at least a week. Saves constant trips to the shops and actually saves money in the long run. We’ve also been sharing our delivery slot with friends in the village by getting them bits that they need. I think everyone should try to do this if they can.

Like I’ve already said all external demands have been stripped away. Don’t get me wrong, I’m missing my friends and going to things like the WI but I’m also not if that makes sense. I’ve been so busy “out there” over the last few years that the break is most welcome. I’m sleeping more and eating less! That’s got to be a good thing, right! I’m also toying with the idea of starting up the line dancing in the kitchen again. It really feels like my life is literally on pause while I get to take time out and relax. That’s a lovely feeling. Normally when I take time out from life I miss so much and disappoint so many but not at the moment.

No one is expecting me to go here, be there or attend this meeting. No parties, no meetings, no appointments and no feeling forced into things for fear of disappointing others or having services/support removed. It really is a break from life. ⏸

I’ve even had enough in the tank to tackle a few jobs almost daily around the house and keep on top of the mess I create a bit. I’m not perfect but it’s better than nothing! I’ve also thrown myself into crafting again. My head is still jam-packed with ideas but I’m actually sorting them and will crack on with them in the next few weeks. Watch this space!

My “diamond painting” project. A birthday present from my bestie, completed in just 3 days 🥰

So Tuesday (7th April) was my birthday. I had a small PDA-friendly gathering at home planned but obviously that couldn’t happen. Paul and I just spent the day together and a few friends dropped presents off and we chatted briefly with them over the big distance of the front door and end of the driveway! That was nice. Yes I was sad not to be able to invite them in or be able to see my family but I know it’s not forever. Life is just on pause for now.

On a funny note I baked my own birthday cake (not an unusual activity) but had the worst baking fail I’ve ever had! (See photo below!). I think I know what happened – I went solo. Paul was mowing the grass and I thought “yeah I can bake this on my own” and “it’s not like it’s an unfamiliar recipe” – boy was I wrong! In true ADHD-style I appeared to have fucked up and baked rubber! It actually held together and I was able to bend and flex it! 😳 I must have missed something out or added the wrong quantity of something! 🤣 Thankfully we had enough ingredients to bake something else and Paul came to the rescue with a chocolate cake. Phew! 🤣 I’m going to try shortbread tomorrow – what can go wrong? It’s only 3 ingredients and I’ve made them countless times! 🙏🤣

Rubber Hummingbird Cake – only fit for the bin as it tasted worse than it looked! 😭

I’ve also had an interesting thought – those following the rules and isolating are in fact living my life. The life I’ve always lived – worried about germs, counting days, hand washing and only going out when absolutely necessary! Yep, that’s pretty much my life! 🤣

Yes I’m a bit put out that Neighbours is now 2 days a week instead of 5, that my beloved Snooker isn’t happening and that Keith Urban has had to postpone his May tour (we have tickets) but it really could be much worse. I’m happy to have a bit of disruption – think of the bigger picture.

I want to end this post by reminding people to stay home. It’s not a joking matter and will save lives, maybe even your own. Remember that next time you complain or are tempted to meet people. This thing is bigger than just you. Stay home, stay safe and save lives please. 💜

Best painted rock I’ve ever seen!

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FEELING CRAFTY

Posted by juliadaunt on January 4, 2020
Posted in: ALL POSTS, AWARENESS, LIFE IN GENERAL. Tagged: ADHD, Adult PDA, Anxiety, ASC, ASD, Attention Deficit Hyperactivity Disorder, Autism, autism spectrum condition, autism spectrum disorder, Autistic, Autistic spectrum condition, Autistic Spectrum Disorder, Awareness, Mental health, Newsons syndrome, Pathological Demand Avoidance, Pathological Demand Avoidance syndrome, PDA, PDD, PDD-NOS, Stress. Leave a comment

Following on from a question that the PIP (Personal Independence Payments, which is a UK government benefit) assessor asked me the other day about did I have any hobbies and interests. My first thought was “yes, loads!” but you see he also asked me if I enjoy them regularly……yeah, there lies the stumbling block for me and countless others with PDA I’m sure. Yes I do have a lot of hobbies and interests but I’m not able to enjoy them on a regular basis like other people can. So, with this in mind, my answer to him was a simple and rather depressing “no”. Mostly my days are filled with scrolling through Facebook/admin, iPad games involving candy and watching huge amounts of television. Not groundbreaking stuff either – Diagnosis Murder, Judge Judy, Neighbours and Game Shows feature heavily! You see I’m always in either preparation or recovery mode and for that I need to watch television. It’s not just about whiling away the hours without having to use my brain – it’s also about being surrounded by the familiar, where the unknown isn’t a thing. My other hobbies, like crafting, involve too much stimulus for preparation and recovery. They excite me too much. I need to be in a low stimulus environment to properly go through those processes. I’d not connected those dots until I started this blog so I’m in the midst of my own mini lightbulb moment! I love it when that happens! Yes I’d always known what I needed and that crafting wasn’t something that I could enjoy all the time but I’d always put that down solely to demand avoidance because I love crafting so much. Yes that is part of it but I also think I’ve stumbled onto something quite interesting. Think of my preparation and recovery times as very extended time-outs or naps (without the sleeping element). You can’t “nap” if the world around you is too busy and exciting – you have to remove the excitement before you can “nap”. It’s really quite simple when put like this. So this is partly why I cannot craft as often as I like, which let’s face it would be all day every day! Not being able to craft very often doesn’t stop me having a lovely little room set up just for that purpose and nor does it stop me buying new things to use or my brain filling up with idea after idea. It actually gets to the point where I have to put other things on hold that normally take up my energy and time and then force myself into the craft room! I know! Sounds crazy when you consider how much I enjoy it! I’m getting to that forcing myself place again. It’s been a good couple of months since I was in there and the ideas and new stuff is piling up! Once I’m in there I’m okay and then it’s hard to get me out! I have to pick the time wisely though so as to make sure it’s not when something big is coming up because I literally have to stop everything else to craft. No Facebook/admin, no socialising and no commitments outside of the home. So you see I couldn’t craft every day from a practical aspect too. No one can live their life closed off completely, even though we might want to at times! Crafting seems to need all of my attention or absolutely none at all. There seems to be no middle ground at all. I’ve tried over the years to find a balance but it just doesn’t work. Maybe one day!

The photos are just some of my recent purchases, including my new hobby of crocheting which I’ve never even done before!

So Paul and I are going to go into the hole that is the craft room to tidy and clean tomorrow! You see that’s the other snag – it’s such a mess! I’m such a messy crafter and I don’t tidy as I go or even at the end of each day – I just let it pile up and up until I actually can’t craft in there anymore! My crafty friends will recoil at that! I struggle with demand avoidance to keep it tidy and then demand avoidance to tidy when it gets out of hand but if I’m to get all these ideas out of my head and turned into something tangible then I have no choice! Paul can’t do it for me because in fairness he wouldn’t know where anything goes and then I wouldn’t be able to find anything. The struggle is real!

So……watch this space! Will I make it into the craft room tomorrow to tidy? Will I craft anything? Or will I just have yet another sofa day? Let’s not forget that even just thinking “I must” or “I want to” makes something a demand, let alone writing a blog about it! Fingers and toes crossed please!

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CRAP START TO 2020!

Posted by juliadaunt on January 2, 2020
Posted in: ALL POSTS, LIFE IN GENERAL, MY MENTAL HEALTH. Tagged: Adult PDA, Anxiety, ASC, ASD, Autism, autism spectrum condition, autism spectrum disorder, Autistic spectrum condition, Autistic Spectrum Disorder, Awareness, Mental health, Newsons syndrome, Pathological Demand Avoidance, Pathological Demand Avoidance syndrome, PDA, PDD, PDD-NOS, Stress. 2 Comments

Families! Can’t pick and choose them……..fuck it! I’m tired of this rift now. It’s stupid and pointless.

Right, let’s start at the beginning. Back in April my mum was in hospital. I tried on more than one occasion to go and see her but couldn’t do it. I really did try. I have a phobia of hospitals and germs you see and I mean a big phobia. For example when Paul had his colonoscopy last year I sat outside in the snow waiting for him rather than inside the hospital! I love my mum dearly and wished I could see her but I just couldn’t do it. I explained this to my brother but was met with sarcasm and nasty comments instead of understanding. He really lashed out at me, telling me to “suck it up” and that he’d “swap his kids’ problems for mine any day”. Rather than reacting badly I decided to put some distance between him and me by saying that “at this moment in time I didn’t want to speak to him again”……roll on 9 months and he’s still adamant that I said that I “never want to speak to him again”! Beam me up! I have the fucking messages so I know what I wrote! Isn’t it crazy how even the written word can be twisted to suit….I never said that I didn’t want to speak to him again! I just said that at this moment I didn’t want to. That was true. I wasn’t prepared to be spoken to like I was a piece of shit on the bottom of his shoe. I don’t think I did anything wrong in that moment. Anyway as the months went on I was drip fed a list of “wrongs” – things like how I’ve chosen my cats over my nieces for example! Ridiculous! What I actually said was that one of my elderly cats is absolutely terrified of children so rather than the kids coming here we would meet halfway. Again what is wrong with that?! Last time they visited he went missing for 6 hours! I’ve been told off for numerous other petty things that I can’t even bring myself to list. Then in the summer they had a family party and guess who wasn’t invited and in fact didn’t know anything about it until I saw the photos on Facebook?! Yeah that would be me! That really hurt! I felt so excluded. That was a deliberate and spiteful act. Everyone else was there apart from me and Paul. Family keep telling me that I should apologise to him and “make amends” but I won’t. Why should I? What exactly have I to apologise for? For being autistic? For having phobias? For existing? I was more than willing to talk things through IF an apology came my way but I’m more likely to get blood from a stone than get that from him. It makes me sad that he’s willing to forgo any type of relationship with me just because he refuses to understand me. It’s like he thinks all of the troubles I have are a choice or something. Like I can just stop having PDA one day, all I need to do is decide that and it will happen. He lacks all empathy too for anyone outside his immediate circle. Yes life has dealt them some very shitty cards, and continues to do so, but that’s no reason to treat me this way. Telling someone with autism to suck it up isn’t okay and effectively wishing autism on your children is just nasty. Oh I nearly forgot I’m also in the wrong for never sending them messages and for always passing on love via my mum (who lives with them). We’ve never been a very “keep in contact family”. We don’t live in each other’s pockets. Up until recently, as it turns out, this was okay. Shame my brother didn’t tell me nicely that he’d like to hear from me more often. I’m not a fucking psychic! Out of interest, I looked to see the date of the last message from him and yep you’ve guessed it – 1 fucking year before, on my birthday! What a hypocrite!!! If you love someone and want to hear from them more then what’s stopping you from picking up a phone or sending a message yourself!??!!! How was I meant to know that he wanted this!

So what was all this ranting meant to achieve……nothing really. I just wanted to use my safe space to say all that’s been pissing me off for so long. Tonight, following a few bits of bad news today, I’ve decided that I’m not going to waste anymore time on waiting for the mythical apology. It makes me very sad to say this but I’m going to close the door on this chapter. I have to. It’s not healthy to hang onto all this negativity. I’m going to post this, close the iPad and sleep. Busy day tomorrow with an “at home” PIP (re)assessment. Dreading that but could be worse. I’m not going to change or apologise for being me. I deserve to be loved and accepted by my family just the way I am. My brother has personality traits that I don’t particularly like but I wouldn’t make him change. That’s what makes him, him. I’m me and I’m okay with that. If he wants to apologise and talk things through then he knows where I am. I shall keep fighting the good fight. #PDA

Love to you all 💜 (and sorry for swearing so much)

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MERRY CHRISTMAS & AN UPDATE

Posted by juliadaunt on December 26, 2019
Posted in: ALL POSTS, LIFE IN GENERAL, MY MENTAL HEALTH. Tagged: ADHD, Adult PDA, ASC, ASD, Attention Deficit Hyperactivity Disorder, Autism, autism spectrum condition, autism spectrum disorder, Autistic, Autistic spectrum condition, Autistic Spectrum Disorder, Awareness, Mental health, Newsons syndrome, Pathological Demand Avoidance, Pathological Demand Avoidance syndrome, PDA, PDD, PDD-NOS. 5 Comments

Hello everyone! Have you missed me?! Boy, it’s been a long time since I posted anything and yes I have the usual barrel load of excuses like I’ve been too busy, I’ve been too demand avoidant and I’ve just not had the inspiration needed to write. All of which are true but also I couldn’t be bothered if I’m honest. Yep, just lazy mixed in too! I find writing more than a quick text or Facebook post hard work. I tend to ramble on and lose the point that I started with in the beginning, a bit like I’m doing right now! I also find the more I have to say the harder it is and there’s quite a lot to say here….

Firstly many of you have been asking how it went with my appointment with my new psychiatrist – well I’m pleased to announce that it went really well! So well in fact! She was very nice and very approachable. She didn’t interrogate me and was very understanding. The appointment only lasted about 20 minutes too which was great! She confirmed that she would send me my prescription once a month and that I wouldn’t need to call to order it or chase it up. I’ve waited several months since the appointment, which was in August, before sharing this in case she didn’t do as she said but I’m pleased to say that she’s stuck to her word! My prescriptions have indeed landed on my doormat once a month, completely hassle-free! It’s lovely not having to worry or run out of meds! She ended my appointment with the lovely words “see you in 12 months” – yep, that’s right! 12 whole months before I have to go back! She didn’t offer me CBT or anything else. She didn’t say I needed to talk about my past. Nothing was offered – just what I’ve been asking for! 

In other news I’m now officially a volunteer for the PDA Society. I’m very proud of this. It’s a pleasure to help them in any way I can. Also my Christmas cards have been selling very well, again it’s lovely to be able to help and so humbling that so many people want to buy my card to send to their loved ones. If you want to stock up for Christmas 2020 you can buy them here! (other cards by other PDAers are also available)

Last month myself and Paul ran another Facebook auction in aid of the PDA Society and raised £629.54! Thank you to everyone who made items for us to sell and to those who bid on those items. 💜

So Christmas Day has been and gone. My most favourite day of the year! I live and breath Christmas and yes it drives all my family and friends mad! I’ve already started planning next years Christmas cards and can’t wait to start making them in January. I know that might sound a little extreme but I send over 80 cards and I like to make my own so I need quite a bit of time to accomplish that. Unfortunately this year I didn’t give myself enough time and I actually had to buy cards!!! Horrific! So come 1st January I will be heading into the craft room for a post Christmas crafting sort out and then I’ll be able to make a start.

So Christmas here was lovely. Just me and Paul and the cats. No meltdowns or stress on the day. Last year we started a new tradition of a Christmas Eve box and we did the same this year. I think it helps regulate my excitement and means that I’m not up at 4am on Christmas Day! It was 6am this year which is actually the time I normally wake anyway! We also started another new tradition last year which was a Scrabble tournament – best of 5 games played over the whole Christmas and new year. We’ve only played the one game so far, which Paul won. I’m having my usual “social blackout” at the moment. I’ve not left the house since 21st December and I won’t again until the first week of January. I use Christmas time as a chance to take a break from everything external. It’s great. Friends are too busy to see me because they are doing their own thing and everything closes or goes onto reduced hours. Going out becomes an option and not a necessity. No WI, no Parish Council and no appointments. People are of course welcome to visit me, and they do, but I won’t go out. It’s great. An enforced break. Lovely! Every Christmas I’m reminded of just how lucky we are. We are blessed. We have a nice warm home and food in the fridge. We have our health and we have each other. Nothing else matters if you have all that.

So what is next for me? Well on the 11th February in Bristol I’m co-hosting a one-day conference with Spectrum Savvy and Sally Cat. I’m very excited. This is the first PDA event of this scale that I’ve co-hosted. I’m really looking forward to it. We have a great line up of speakers, including Sally Cat, Dr. Judy Eaton (Video-link) and Libby Hill. Tickets can be purchased HERE and at the moment there is 10% off the ticket price until the new year! I can’t wait to blog about it!

Lastly I hope you’ve all had a lovely Christmas and I wish you all a very peaceful and healthy 2020! Love to you all 💜

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BOOK REVIEW – AUTISM WITH LOLA

Posted by juliadaunt on October 9, 2019
Posted in: ALL POSTS, AWARENESS, GUEST POSTS & INTERVIEWS. Tagged: Anxiety, ASC, Autism, autism spectrum condition, autism spectrum disorder, Autistic, Autistic spectrum condition, Autistic Spectrum Disorder, Awareness, Diagnosis, Help, Information, Newsons syndrome, Pathological Demand Avoidance, Pathological Demand Avoidance syndrome, PDA, PDD, PDD-NOS, Psychology, Questions, Support. 2 Comments

I’ve done several book reviews in the past but I’ve never reviewed a children’s book….until now that is! My friend Jodie Isitt, from Autism with Love, has recently published her first book. Jodie is a mum of 3 children with autism (one with PDA) and has recently braved the world of writing books for children!

Layout and look

One of the things that I liked straight away was that the Autism with Lola book isn’t garish in its use of colours. The pastel shades are perfect – enough to hold a child’s attention but not so much that it gives you a headache! It was fun to read but still packed full of information that was clear and easy to understand. The illustrations are bold and clear and the characters have good facial expressions, which really help tell the story and get across the different emotions covered. I also like the fact that there are no page numbers to ruin the look of the beautiful illustrations. The book is also a good length – ideal for bedtime reading.

About the story

I can relate to Lola, although I hid/hide my sensory stuff! Or at least try to! The characters are cute and will appeal to both boys and girls. One important point to make is whilst the book covers sensory differences/sensitivities it didn’t dwell on the fact that Lola had Autism. This is important. One thing I’ve noticed with other books of a similar nature is that they try to pack too much information into the story so that the original message is lost completely. Less is more! The characters are cute so as to engage children. There’s also a section at the back for adults needing further information and support which is wonderful to see.

About the activity book

I’ve so far resisted doing any……just about! I love how it not only relates to the story book but also expands on it. It definitely opens up discussion and allows the opportunity to elaborate further. It’s much more than a colouring book and contains many different activities and is again fairly unisex. Definitely good for exploring empathy.

About the plush

The Lola plush is adorable and silky soft to the touch. Her tags are hidden away under her clothes so they don’t spoil the look. She’s the perfect size for small hands and has very tactile ears. The plush really helps bring the story to life and her pocket is an actual working pocket! Awesome!

So all in all I highly recommend this series of books and plush for little ones. I’ve never reviewed a children’s book before but I must say that I thoroughly enjoyed it! Let’s face it, I’m a big kid at heart! You can purchase the complete set, including the lovely plush bunny here and I can’t wait to read the next instalment!

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MY BIGGEST FEAR

Posted by juliadaunt on July 18, 2019
Posted in: ALL POSTS, AWARENESS, LIFE IN GENERAL, MY MENTAL HEALTH. 7 Comments

I’m literally sat here crying as I write this. I need to purge myself of all these thoughts and feelings. The anxiety is just too much at the moment. I need to share for me and to maybe help others too.

Mental health services SUCK! That’s the short version. The longer version is I’m sick and tired of being messed about with. I feel like an object for them to stare at and prod and poke and question endlessly. They (psychiatrists) question everything and read so much into innocent or badly worded replies! An appointment with them leaves me feeling like I’ve just been interrogated. I leave appointments feeling victimised, bullied, controlled and blamed! How is that even helpful for me?

For those of you that have been following my “shrink journey” of late you’ll know the backstory so I won’t go over it again. If you don’t know then READ THIS. So I’ve been given a new psychiatrist, who for now, I shall call Dr. T. My appointment letter arrived last month (June) and I promptly emailed the receptionist at the hospital to ask Dr. T what her knowledge was of PDA and also to make Dr. T aware of some big triggers for me (suddenly mentioning a change of medication or questioning my diagnoses being the 2 main ones). So this email was sent on 28th June. Today I stupidly decided that today was a good day to call them and ask if they had gotten my email – the reply was a simple yes. 🙄 I then asked why no one had emailed me back (I asked for this in my email) and the receptionist said she didn’t think I needed a reply! 🤬 I feel really stupid now. Why did I call them? Why today? You see Paul is away at the moment so I’m on my own (other than the kitties) – will I ever learn!? Anyway, I asked the receptionist if Dr. T had any experience/knowledge/or whatever in PDA, her reply was a simple “I’m sure she does. All our psychiatrists will have the same training” – f*ck me! I didn’t say that but I did think it! I pointed out to the receptionist that psychiatrists don’t have any specific training in autism, let alone PDA. Her reply was a stunned silence. Funnily enough that’s the same response I had when I first heard that! 😐 She then said that she’d printed my email and put it in Dr. T’s in-tray but she’s not seen yet because she’s on annual leave for the next 2 weeks! She’s due back that DAY BEFORE I see her! 🤬🤬🤬 Can this story get anymore “argh!”. Yep, it can…..I then went into meltdown and began crying and panicking. All I want to know is, is Dr. T another pointless muppet that is going to f*ck with my head! Not too much to ask is it?! Surely not…..

Once I gathered myself I rang the Patient Experience Team, who have been handling all this chaos, and she was just as confused as I was. She basically said all I can is wait and see! Oh that’s SO helpful, thanks! I asked why the CCG had referred me to Dr. T, hoping that this would answer my question about her experience, but sadly it just raised more concerns. The answer was “I think she was selected because of location” – right! I was promised by the CCG that they wouldn’t just send me to anyone and would find me someone who understood! Clearly not happening! 🤬😔 I then, in pure depression, rang my GP. She’s the only person in all this who has some empathy. Okay, she can’t actually do anything like prescribe the medication, but she “gets it”. She doesn’t judge me and she understands PDA. She’s also a human. 👍 The GP said she’d get her receptionist to call Dr. T’s receptionist first thing in the morning and request that Dr. T call her as soon as she returns to discuss me, my email and my needs. The GP did say that all she can do is request this but it’s entirely up to Dr. T if she takes her up on this offer. 🙏 The GP also said that it might be worth postponing my appointment with Dr. T (currently booked for the 6th August) so that she has more time to read my email and make inquiries if she needs to. I’m going to sleep on that idea. I know what she’s saying but I’m also keen to get the f*cking appointment out of the way. I’m tired of it all. I’m tired of feeling so anxious about the whole thing. Let’s not forget that this whole mess is only so I can get my methylphenidate! I don’t actually want or need (some will disagree I’m sure!) input from mental health services. I don’t like them. I don’t trust them. They scare me. The power they wield over people scares me. The way the charge in and mess around with a life that was okay. I’m happy with my life the way it is. I don’t want to change and more importantly I don’t think I need to! So far this year I’ve been called lazy, Paul’s been called controlling, I’ve had the integrity of my friendships questioned and I’ve been pushed to breaking point and all for a monthly script! 😔 It really shouldn’t be this hard, should it? Why are people with ASD/ADHD continuously pushed and broken by services that we are FORCED to attend? That’s how it feels to me. I feel forced to see Dr. T (and the others) just to satisfy their rules and egos. I’m close to telling them all to f*ck off once and for all! I’m not joking. Tonight I asked the GP if I were to change meds would she be able to prescribe. The short answer is yes, if it’s non-stimulant and not a “red drug”. Aha! There may be light at the end of the tunnel. It would mean a major upheaval and a possible collapse of everything in my life if it goes wrong but maybe it’s worth trying. Imagine if it worked! I’d be FREE! Ah, wouldn’t that be great! Feels like an impossible dream at the moment. The GP was sceptical because of the severity of my ADHD but it’s a light, albeit a dim one! 💡 I can’t believe I’m actually contemplating trying another medication just so I don’t have to see a shrink again! How crazy is that! Methylphenidate has quite literally saved my life. I would most certainly be in prison now if it wasn’t for it. That’s not me being over dramatic or anything. It’s true. That was where I was headed right before I was diagnosed and medicated. That’s where they want to send me back to. Back to that hell. Back to the me who had no friends, family who didn’t like me, I hated me and wanted to die. Yep, it’s no wonder I’m fighting this with everything I have! I can’t go back to that. I would rather die than be that person again. 😔 I know some of you will read that and think “big deal” or “suck it up”. This shit matters to me. It’s a big deal for. I feel like I’m literally fighting for my life, well quality of life. This stuff is a big deal to me. It matters. My rights matter. I just want to be me in a world that doesn’t hate me and want me to change. I don’t see why that’s such an issue…..

My biggest fear in life, and that’s bigger than spiders and germs, is of being sectioned. I know I’m a LONG way off that and I’m one of the sanest people that know but it’s a fear and a thought that I can’t get out of my head at the moment. It’s just going round and round. Imagine them having that much power over me! Terrifying. I wake up at night worrying about it. Crazy thoughts. Round and round they go. People in prison have more freedom. I’d rather be in prison. My heart bleeds for those in that situation. I can’t imagine anything worse than being held against your will and being “looked after” by people who should be patients themselves. 😔😔😔

Right, I’m going to sign off now and drug myself so I can sleep. Yep, we are still at the “let’s drug myself to sleep” stage. That won’t change anytime soon. It’s been like that now for the 2 years this crap has been going on for. I long for a peaceful nights sleep that’s not interrupted by a voice telling me to kill myself. 🙏 Night everyone and thanks for reading. 💜

P.S – sorry for any typos but my proofreader (Paul) is unavailable at the moment. 👍

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WELL THAT WAS FUN!

Posted by juliadaunt on April 18, 2019
Posted in: ALL POSTS, AWARENESS, LIFE IN GENERAL, MY MENTAL HEALTH. Tagged: ADHD, Adult PDA, Anxiety, ASC, ASD, Attention Deficit Hyperactivity Disorder, Autism, autism spectrum condition, autism spectrum disorder, Autistic, Autistic spectrum condition, Autistic Spectrum Disorder, Awareness, Diagnosis, Help, Information, Mental health, MY MENTAL HEALTH, Newsons syndrome, Pathological Demand Avoidance, Pathological Demand Avoidance syndrome, PDA, PDD, PDD-NOS, Psychology, Psychosis, Questions, Stress, Support. 10 Comments

Below is a transcript of yesterday’s (17th April) appointment with the psychiatrist. It was a very difficult appointment for me, even with the support of Paul and my advocate. I felt like I was on trial. We’ve put the more omg statements in bold but it’s all pretty awful. I’m not sharing this for sympathy or anything like that. I’m sharing to make people aware and to help them understand. Adult services are a joke and they don’t cater for PDA. If this doesn’t change soon then the system will be flooded with soon-to-be adults being forced into a system that doesn’t even try to understand them but instead judges them tries to change what can’t be changed and fix what isn’t broken…………..

*Firstly – wouldn’t shake advocate’s hand or greet us. We travelled in silence in the lift. She didn’t hold doors open for us, just let them fall back. One nearly hit Julia!

No “please have a seat” (especially to me and advocate)*

 

Dr Innes – (studying notes on screen) “You (Julia) may have cancelled several appointments [Julia cancelled only one!]. There may have been others cancelled as well. There is an enormous amount of documentation missing so until we have that, the assessment is not complete”

Dr Innes – “I want to check with you while your friend’s [our advocate] still here – is there anything in the background history that you would wish not to be discussed in front of her?”

Julia – “No”

Innes – “No? So she knows about all of it, does she?”

Julia: “Well if she doesn’t, she will in a minute!”

Dr Innes – “Had I received the information I requested five months ago, I would have been in a better position to refer you to our clinic that specialises in the prescribing of those drugs for a review of the matter”

Julia – “I’m not responsible for what the GP does and doesn’t do”

Dr Innes – “Indeed. Nor am I, actually. The most I can do is keep writing letters”

Dr Innes: “I am – not on the basis of the available information – convinced that the criteria for continuing a fairly high dose of a stimulant medication which is a controlled drug is actually being met and now I’ve committed quite a lot of time and effort thinking about this and getting further information. As far as I’m concerned, this is still an assessment that has not been completed but professionally I’ve been placed in a difficult position and I’m also aware that your interaction with GPs has had its difficulties and there have been a number of complaints and one change of surgery within the last couple of years – for what reason, I don’t exactly know. But what I’m saying – clinically, ethically, this is not an easy situation.”

Julia – “All this red tape stuff is nothing to do with me, I’m not – it’s not my problem

Dr Innes – “Well, in a sense it is your problem because you’re receiving this on the willingness of people to prescribe it. Now you’re 36 years old – most people of 36 even with a childhood diagnosis of ADHD are not still on Ritalin”

Paul – “Are you saying that this is something you can grow out of?”

Dr Innes – “What I’m saying is, this is normal prescribing practice and people do improve with age.”

Advocate – “But it’s not unheard of…is it? It’s not unique?

Dr Innes – “It’s not unique, no, but nor is stopping it at 16 that’s commoner, to still be on it at 36 a lot commoner” (we are aware this makes no sense)

Dr Innes – “How much do you weigh?”

Julia – “No one’s business!”

Dr Innes – “I see you’re drinking a can of Pepsi Max – can I have a look at it please?”

Julia *slams down can* “For…?”

Dr Innes – “Caffeine”

Julia – “Right…it has caffeine in it…”

Dr Innes – “How much energy drinks or caffeine-containing drinks do you drink a day?”

Julia – “Well, that’s my only drink. I have one tea in the morning and then Pepsi Max throughout the day, so it depends obviously on what I’m doing, how hot it is – it’s my main liquid so I can’t…

“Dr Innes – “Ok…this is 330 mls *still examining the can as if studying outer space object* It doesn’t say how much caffeine. It doesn’t actually say that, does it?”

Julia – “Well, it isn’t actually an energy drink…”

Dr Innes – “Well it has got some caffeine in it. Do you drink coffee or energy drinks?”

Julia – “No”

(following discussion about Paul helping)

Dr Innes – “How do you feel about that?”

Julia – “Fine, it’s just how it is”

Dr Innes – “Do other people help you in this way?”

Julia – “If Paul’s not around and I need help, then yeah”

Dr Innes – “How many people help you?”

Julia – “I’ve got a friend in the village who is on hand when Paul is away so if I need anything, day or night, I can ring her and she will come down. I’ve got a friend with a car who’s said that if the cats are ill, she will help.”

Dr Innes – “What do you do for them?”

Julia – “Friendship! It’s a two-way street…”

Dr Innes – “Ok. What do you actually do for them?”

Julia – *exasperated sigh*…”Well, we go places together, we talk – you’re asking me to define friendship?”

Dr Innes – “Yes…”

Julia – “Well, it’s two-way isn’t it. If one of them has a problem, then I will listen and try and help”

Dr Innes – “What about if one of them needed you to do something physically…like pick them up something?”

Julia – “Well, I’d ask Paul to do it, ‘cos I don’t go out on my own, so I couldn’t pick up something. And plus, they wouldn’t ask me to do that because they know I couldn’t, so… “

Dr Innes – “Ok. What if Paul wouldn’t do something that you wanted him to do?”

Julia – “But he would, so… *laughs*. That would never be a problem”

Paul – “…I think also what those friends give is a kind of atmosphere and an understanding of PDA that she doesn’t get too many other places…”

Dr Innes – “Mmm….”

Paul – “…and that’s worth its weight in gold”

Dr Innes – *subject-change!* “Do you understand why I referred you to an OT?

Julia – “No”

Dr Innes – “Ok. Most people’s relationships are a bit more two-way than yours– people can ask things of each other…”

Julia – *sighs* “Yep…”

Dr Innes – “You see what I mean? It sounds like you have the understanding that Paul will do absolutely anything that you ask”

Julia – “Mmm”

Dr Innes – “But you’re also saying that you can’t do these things yourself. If he didn’t do them, they wouldn’t get done. So that means he has quite a lot of power over you and I don’t know how you feel about that”

Julia – “Oh, for fuck’s sake!”

Paul – “Sorry, I… *speechless*

Julia – “I mean it nicely but if you knew Paul, you would know how ridiculous that sounds (laughing). He is my partner and my carer. It is no different than if I had a physical disability and I needed help. That’s not about controlling – that’s about somebody helping another person. It’s not a power struggle.”

Dr Innes – “Ok, I haven’t said it was a struggle…”

Julia – “Ohhhhhhhhh, for fuck’s sake… (laughs)”

Dr Innes – “The point of the referral to an OT is that you might be able to help…might be possible to help you do some of these things you haven’t been doing”

Julia – “I don’t do those things because I have PDA! So, sending me to an OT is like pissing in the wind. It’s not going to make any difference! If I can’t motivate myself and make myself do everyday tasks that everyone else does then I can guarantee you an OT will have no chance”

Dr Innes – “Let me put this another way to you. You’re saying that the issue is basically lack of motivation”

Julia – “No!!!!!!!!!!!!! Uh… Do you know anything about PDA?”

Dr Innes – “I deal with human beings, more than I deal with conditions”

Julia – “No…do you know anything about PDA?”

Dr Innes – “People don’t want to do things, so they don’t do them”

Julia – “That’s got nothing to do with… I avoid everything, I avoid things I enjoy, I avoid things I don’t (enjoy) – I’m sure you do, everyone does. But I avoid EVERYTHING and it isn’t a choice! It’s not a conscious choice. If you knew about PDA, you would know that and you would know how ridiculous you sound”

Dr Innes – “You think other people have conscious choices?”

Julia – “Yes, when it comes to getting up and getting washed and dressed. Yes – they either do or they don’t. You made a choice this morning to get up and get washed and dressed. I had to physically force myself to do that and it’s not just because I‘m here – I have to do that every time I go out. I don’t get washed and dressed unless I’m going out so I avoid that problem.”

Dr Innes – “Hmmm. What do you think that the correspondence that should be on its way is going to say?”

Julia – “(exasperated) I don’t know what she’s sending, so how would I have any clue?”

Dr Innes – “Well, it’s about you – it’s a large volume of correspondence about you, isn’t it – what do you think it’s going to say?”

Julia – “Well, if you choose to read it, then you’ll find out about PDA! And ADHD. And you’d know about my diagnosis, or re-diagnosis from the Maudsley…”

*Conversation about chasing up docs..*

Dr Innes – “Do you think there’s any input other than people doing everything for you that’s going to make any difference to this?”

Julia – *sighs*

Dr Innes – “Do you even want to make difference to it? I mean, I think that’s a reasonable question under the circumstances because we’re only in the business in psychiatry of providing inputs that change something”

Julia – “ASD is not a mental health problem. You are sat in front of me trying to cure autism!

Dr Innes – “Err, no I’m not, actually…”

Julia – “Well, you are, because PDA is a form of autism. You want to know if I would like to be able to do these things for myself. Well that’s like asking somebody who’s paralysed from the neck down if they’d like to walk. Theanswer would probably be yes but it’s an irrelevant question because it won’t happen! It can’t happen (further example…blind people)

Dr Innes – “First of all, there are people with high spinal injuries who are paralysed at the point of injury who do manage to walk again but it takes a lot of work – it’s not comfortable. Secondly, some people will gain worthwhile function and independence even with physical disability – there is an issue what’s biologically possible…

Julia – “(cuts off – had enough!) Do you not think I’ve tried in 36 years on the planet”?

Dr Innes – “I’m sure the correspondence…”

Julia – “No! Do you not think I’ve tried personally to help myself over 36 years?! Cos I’ve certainly had fuck all input from you lot!”

Dr Innes – “I think we need to get back to the previous question about the value of input. Now I do see people with typical autistic disorders and the reason I see them is because either we (inaudible)…or we are providing input which is useful. If there’s nothing useful that can be done we don’t see them because it’s not a sensible use of this resource and it’s not a sensible use of their time. Most of the people I see in this clinic have got or have had in the not too distant future some form of identifiable psychiatric disability for which they’re wanting help to change…”

Julia – “I’m here for ADHD which is also not a psychiatric condition but there we are!

Dr Innes – “Well, you may not feel it’s a psychiatric condition but the medicationprescribed for it acts upon the central nervous system and after the age of 18 I think can only be prescribed by psychiatrists.”

Julia – “Still not a psychiatric condition but there we go…”

Dr Innes – “There are strict regulations about controlled drugs”

Julia – “Well, you follow your rules and I’ll follow along”

Dr Innes – “My rules about this are I expect to be receiving that correspondence within one month...”

Julia – “Don’t give me a deadline! What am I supposed to do – go into the surgery and get it myself and bring it up here?”

Dr Innes – “The GP will not do that…”

Julia – “Well, exactly! Why are you giving me a deadline? Get on the phone to her and give her the deadline!”

Dr Innes – “I will be doing that in the letter I send them”

Julia – “Cos I’m not having any input between you and the doctor – if you two want to argue the toss over who should send what, that’s between you two!”

Dr Innes – “Do you not think there’s a bit of a discrepancy between you saying you can’t do anything at all and you spending such a lot of time on this issue?Trying to persuade me to prescribe something that I’ve already told you…”

       *all speak at once – drown her out*

Julia – “Are you going to prescribe Ritalin today?”

Dr Innes – “Yes but for one month! And then I will see what evidence there is…”

Julia – “Well then you can pick up the fucking pieces after!”

Dr Innes – “What pieces do you think there are likely to be?”

Julia – “When my life disintegrates before us. We can all sit back and enjoy that”

Dr Innes – “What would happen to your life?”

Julia – “I wouldn’t have one.”

Dr Innes – “Ok, how would it be different to the life you’ve got at present? What would you expect to see changing?”

Julia – “Well, I would have no friends, no relationships, I wouldn’t be able to go out or enjoy myself”

Dr Innes – “You don’t go out!”

Julia – “No no…I do go out. I don’t go out on my own, without support.”

Advocate – “But I also think what’s missing there is that Julia has achieved a great deal with the medication and with Paul’s support and I think that will fall apart completely without that. I don’t think you’re seeing a picture of how Julia is with the medication

because we’re getting bogged down with details which aren’t necessarily giving you a picture.”

*Conversation continues…*

*Julia describes unmedicated Julia…*

Julia – “Ritalin gave me my life back and you’re expecting me to say ok, fine, take it away”

Dr Innes – *Asks new question (unrelated)*

Julia – “I love the way you glossed over that bit (Dr Innes glossed over this comment too!)

*Talked about how Julia fills her time. Advocate was explaining what Julia does when Dr Innes interrupted…

Dr Innes – “Can I stop you here from a moment. If your friend had not said this, what would you have done?”

Julia – “I’m closing down, so nothing.”

Dr Innes – “Right”

Julia – “I’ve had enough”

Dr Innes – “Ok. That’s fine”

Advocate – “You’re in defence mode, aren’t you – I can see that”

Julia – “I’m nice and angry, yeah!”

Dr Innes – “So the Ritalin doesn’t prevent that?”

Julia – “No, it enables that!”

Dr Innes – “It doesn’t prevent you getting angry?”

Julia – “Well, no!”

Dr Innes – “If you go to a meeting and someone asks you a question, who responds?”

Julia – “Me! (surprised!). They don’t piss me off, though…you do!”

Dr Innes – “But sometimes you must be challenged….”

Julia – “Not like you do! They don’t sit there and pick you apart. And fuck about with your life!”

Dr Innes – *interrupting* “How do you respond to questions?”

Julia – “…and make threats”

Dr Innes – “You can respond to questions, though?”

Julia – “In a normal situation, fine.”

Dr Innes – “Ok, so it’s not that they’re saying, ooh we’re asking Julia, who’s that man next to her answering for her…you can do that?”

Julia – “Do you have to sound quite so surprised?!”

Dr Innes – “But I think it is worth commenting…”

Julia – “I’m only defensive now because I’m sat here in front of you”

Dr Innes – “Hmmm”

Julia – “I don’t like you and I don’t like psychiatrists, so why should I be respectful of you when you’re not respectful of me?!”

Dr Innes – “It’s not actually an issue of respect”

Julia – “It bloody well is!”

Dr Innes – “Now, you may well not like psychiatry…”

Julia – “PsychiaTRISTS…I have no problem with psychiatry”

Dr Innes – “People don’t have to like mental health professionals”

Julia – “I do if I’m supposed to see them!”

Dr Innes – “Well, you’re making it quite clear the only reason you’re seeing anyone is for a prescription. I hope I’m making it quite clear that there are real professional…”

Julia – “I don’t need you lot coming into my life again and dicking about and messing about with things.”

Dr Innes – “You will not be having prescriptions for this type of medication unless people understand what is going on in your life”

Julia – “But you DON’T understand! That’s the whole point. You’re asking me if I have a go at people at meetings – well of course I don’t because I wouldn’t still be on the committee. “

Dr Innes – “No – nor if you couldn’t answer relevant questions”

Julia – “So, if other people treated me the way you do, then no I wouldn’t be on the committee”

Dr Innes – “And the sort of questions I’m asking about your functioning and your symptoms are exactly the same questions I ask other patients with ADHD. Whether they’re 18 or whether they’re 14”

Julia – “That’s why your reviews are so wonderful!”

Dr Innes – “Well (more glossing!) – those are the sort of questions that a responsible psychiatrist would be asking”

Julia – “Yes but if you knew anything about PDA, you’d know how to phrase those questions”

Dr Innes – “Well”

Julia – “Well…”

Dr Innes – “…I think that (stutters) the difficulty is some questions are hard to answer. Now, what makes them hard to answer is worth thinking about.

Julia – “You should so go into politics! Your ability to not answer a question and actually answer it with another question is…hats-off!”

Dr Innes – “If people don’t answer questions, you wonder why they’re not answering”

Julia – “I’m not answering them because I don’t want to”

Dr Innes – “Fine”

Paul – “Another aspect is that you’ve said it will only be another month of prescription so why would you now go into a line of questioning that’s irrelevant? With respect…what’s the point?!”

Dr Innes – “Because the – (finds words) – in order to prescribe the medication for a condition, you need to establish the state of that condition. I would have thought that was obvious”

Julia – “Yep“(sarcastically)

Dr Innes – “The normal response to how are you doing, what are your symptoms is to tell you how…”

Julia – “I have!”

Dr Innes – “Not to complain about the question, to answer it”

Julia – “But do your patients normally have ADHD and PDA?”

Dr Innes – “Erm…I have several patients with ADHD. Patients with PDA tend not to, they tend…if it exists – it’s a disputed category without any clear standard treatment guidelines.”

Julia – “It might well be but my diagnosis stands, unless you’re another professor you cannot undo the diagnosis. You can diagnose alongside and you can add in all sorts of other diagnoses if you want but you can’t undo it”

Dr Innes – “Hmmm.”

Julia – “So, tough shit on that one, love!”

Dr Innes – “But, within our service and within many other services I would think there is nothing specific for the condition involving basically not doing very much at all”

Julia – (laughs)

Dr Innes – “We look at people’s motivation to change, whether we can provide anything that will help them change but if there is no…”

Advocate – “So, you’re saying you have a condition which is about motivation not to do anything at all?!”

Dr Innes – “Yes”

Julia – “So, laziness?”

Dr Innes – “Well, you could formulate it as laziness. I haven’t actually done that...erm but I think if…”

Julia – “What is wrong with me then, if it’s not PDA or ADHD?”

Dr Innes – “Well, the difficulties you’re describing which are interpersonal, difficulty in managing your emotions and behaviour, difficulty in responding to what most people would call ordinary demands of adult life and settings – I think you ask a great deal of other people and it’s clear there are limits to what you can provide in return. I think that it’s most appropriately conceptualised as your personality…”

*Advocate – stresses how much Julia does and the impact it has…*

Dr Innes (to advocate) – “And presumably she’s told you about all of this?”

Advocate – “Yes! And I can see it as well”

Dr Innes – “So, one of the things you’re doing for her is saying something that she might otherwise have said for herself”

Advocate – “Yes, if she was not in a stressful situation. At the moment, the way that Julia reacts is in fight and flight and the only different things that are happening is she’s not yet flown, which I’m quite surprised at…”

*Advocate: continues to stress the positive impact Julia’s had on community in short space of time…

Dr Innes doesn’t acknowledge this and rambles on about the lost OT referral…*

*Dr Innes’ phone rings. She cuts Julia off, answers without excusing herself or apologising afterwards…*

*Dr Innes continues to ramble on about clinical reasons for stopping Ritalin suddenly (e.g. heart risk)*

Dr Innes – “If there is no psychiatric reason to continue it, it will be withdrawn”

Julia – “So based on all that, you don’t think there is a psychiatric reason to continue?”

Dr Innes – “I’m sceptical but I’m awaiting further information”

Julia – “Wow…”

Advocate – “And is that because of the things that we’re saying she’s able to do?”

Dr Innes – “No…it’s not only that.”

Julia – “So what makes you think I don’t have ADHD then?”

Dr Innes – “Hmmm…even if you had a clear historical account of ADHD, at the age of 36 – I’m sceptical”

Julia – “It’s a lifelong condition!”

Dr Innes – “Hmm, well, people’s brains change with age”

Julia – “Yeah but…it’s a lifelong neurological condition!”

Dr Innes – “Um…”

Julia – “Are you up to date on research?!”

Dr Innes – “People’s brains change with age”

Julia – “Yes they do but are you up to date with research?!”

Dr Innes – “People’s propensity to develop complications…”

Julia – “The NHS website who you work for – their website says it’s a lifelong neurological condition. I think it’s quite funny!”

Dr Innes – “People’s personalities, cognitive abilities and the physical structure of their bodies change with age – what’s appropriate at one age is not necessarily…”

Julia – “And you’ve known me for how long and decided that? Without reading all the stuff”

Dr Innes – “I haven’t had it to read”

Julia – “But you’re making this assumption based on no evidence because you haven’t had any. You’re putting your cart before your horse!”

Dr Innes – “Right (moving on!). There are several other things I need to do and you’ve already overrun the appointment time so we’ll finish there and I’ll give you one further prescription and I’ll require the trust or if necessary the CCG to update me about what’s happening with your request for a change of consultant because they’ve not done that.”

Julia – “Again – not my fault”

Dr Innes – “No but my professional responsibility’s here and these include the need for extreme care about the prescribing of controlled drugs. So, I‘ll try to see you again in about two months”

*following some debate, the next appointment is now in three months. Additional debate about prescribing of Ritalin follows…*

Dr Innes – “I’ve done all I’m going to do about this today, so can you go downstairs and book your next appointment”

Julia – “And the prescription?”

Dr Innes – “Well I’ll write it and it’s been uploaded by the secretary”

Julia – “How long will that take?”

Dr Innes – “If I can start in a couple of minutes, I’ll start in a couple of minutes! I need to go out and get the prescription pad before I can do that”

*No official close to meeting and no goodbyes – we simply walk out*

 

 

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LONG TIME COMING

Posted by juliadaunt on April 16, 2019
Posted in: ALL POSTS, LIFE IN GENERAL, MY MENTAL HEALTH. Tagged: ADHD, Adult PDA, Anxiety, ASC, ASD, Attention Deficit Hyperactivity Disorder, Autism, autism spectrum disorder, Autistic, Autistic spectrum condition, Autistic Spectrum Disorder, Diagnosis, Mental health, MY MENTAL HEALTH, Pathological Demand Avoidance syndrome, PDA, Psychology, Psychosis, Stress, Support. 10 Comments

Hello everyone! Where do I begin…..it’s been over a year since I published anything here. That’s partly because I’ve been busy but also because of demand avoidance (DA). I’ve written a few paragraphs here and there and then either doubted if they were any good or just hit the DA wall. It’s been quite frustrating really. I want to help people and keep people updated but it’s hard sometimes, even with a strong desire to do so. Right, where do I begin? Do I begin here or backdate with the past year? Maybe a bit of both? I’m just rambling now. Rambling with DA writer’s block! Lol 😂

Well the past year has been good on the whole. I’ve become a parish councillor and started a Women’s Institute and became its president! Crazy hey! 😜 I’ve also had several run-ins with a mental health service who don’t “get me” and who are threatening to mess with my meds when they are working just fine. In fact, I have an appointment tomorrow (Wednesday 17th April) to see a psychiatrist I saw late last year who was nothing short of horrible. She didn’t understand me, didn’t try to and didn’t listen. She made no adjustments for me and at one point shouted at me! We’ve been in communications with the CCG to see if they can’t assign me to someone else and sadly they’ve not come up with a name yet, hence why I have to see this woman again. I’m terrified. A friend has kindly offered to be my advocate for the appointment because Paul’s not good at that bit. So tomorrow morning the three of us are off into battle……

So more about the Parish Council and WI……I’m loving both roles. They are quite demanding of my time so I’ve had to give up several other things to make room for them in my head, like some of my Facebook admin roles, but I feel it’s worth it.

I’ve still not worked out what this entry is about, have you?! 😂

In other news myself and Ruth Fidler have begun work on our book! Yep, it’s really happening! It’s due to be released late next year (2020) so keep an eye out for it. I believe it’s available for pre-order on Amazon. 👍

I’ve settled a bit more into life in Nottinghamshire. I still find myself “forgetting” that we’ve moved but it’s happening less and less now. The cats have well and truly made this place their home and, despite health problems associated with old age, they continue to enjoy life. 😻

Things are also good between Paul and I. We continue to have each other’s backs and are really happy. Believe it or not we’ve been together nearly 15 years!!! 😮

So, basically this entry has turned into an update. I thought it might when I started writing but hoped that it would be something a little different. Something interesting and insightful. I shall post it anyway. Yes, it’s a bit dull but it’s all I’ve got at the moment and something is better than nothing. I need to get back into the habit of writing this blog. I hoped that I would share some gems into how I’m feeling about my appointment tomorrow but now it comes to it I can’t dig deep enough for it. Every time I think about it I feel physically sick and my heart starts racing. I just want to speed up time so it’s over quicker. Does anyone have a magic wand for that??? Would be nice! What would also be nice is a shrink who understands PDA and a health system who don’t send those of us with ASD to go and see psychiatrists! After all ASD/PDA isn’t a mental health condition. I hope the next generation aren’t fighting that battle but I fear they will be…..

Right, well I’m going to sign off now and have a nice long shower to help try and reduce some anxiety if I can. I’ll see you all on the other side!

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SHRINKING INTO OBLIVION

Posted by juliadaunt on February 22, 2018
Posted in: ALL POSTS, LIFE IN GENERAL, MY MENTAL HEALTH. Tagged: ADHD, Adult PDA, Anxiety, ASC, ASD, Attention Deficit Hyperactivity Disorder, Autism, autism spectrum condition, autism spectrum disorder, Autistic, Autistic spectrum condition, Autistic Spectrum Disorder, Awareness, Depression, Diagnosis, ENC, Mental health, Newsons syndrome, Pathological Demand Avoidance, Pathological Demand Avoidance syndrome, PDA, PDD, PDD-NOS, Psychology, Psychosis, Self harm, Stress. 8 Comments

It’s been a while since I posted anything here. Mainly because I haven’t really had anything “news-worthy” to report and also because I’ve been quite stressed out. All that came to a head this morning……

So back in the early summer of last year (2017) I was “forcefully” referred to see a psychiatrist. I say forcefully because I didn’t ask to be seen, nor did I want to be seen and I was told I had no choice – that to me is force. It all came about because here in Nottinghamshire, GPs aren’t allowed to prescribe Ritalin (methylphenidate) – it must be done under the care and supervision of a psychiatrist. Moving has caused chaos. It was different in Devon. In Devon I was under DANA (Devon Autism and ADHD service). There I saw a psychiatric nurse once a year for a medication review. The GP was then instructed to prescribe and monitor BP etc. This worked well for all involved but mainly for me. Sadly for me Nottinghamshire is very different. Here Ritalin is classed as a “Red Drug” and cannot be prescribed by a GP, even with the go-ahead of a psychiatrist. So back in the summer, after one GP point blank refusing to prescribe Ritalin, I was “urgently” referred to see the psychiatrist here. It’s now the end of February 2018 and I’ve just had my “urgent” appointment. All I can say is thank goodness I wasn’t in crisis. Thankfully the psychiatrist has been writing my prescriptions while I’ve been on the waiting list. Phew.

So that’s a bit of background on things…..so anyway with my appointment looming I’ve been getting gradually more and more anxious over the past few months. I made sure the GP made the psychiatrist aware of PDA and I’ve been doing my normal preparation of reducing demands etc but it hasn’t really helped. The problem is I almost have a fear of psychiatrists. It’s certainly a very strong dislike of what they do. I can honestly say, hand on heart, that I have never had a good experience when seeing a psychiatrist – and this morning was no different. Like I said I’d done all my preparation and psyched myself up as much as possible but it was still terrifying. For days before I’ve had palpitations, sweats and trouble settling my mind. I’ve felt sick, had tummy-ache and felt tearful. And all over a 1 hour appointment. As soon as we walked into the room I knew we were in for nightmare time…..he asked about my attachment to my mother, wanted me to talk about my negative experiences at school and throughout my childhood in general and he wanted me to talk about my biological dad (who is in prison and who hasn’t seen me since I was 3 weeks old). He also hinted that he’d like me to have psychotherapy! Yeah, yeah – ain’t happening pal! I don’t have “issues” that I need to talk about. I’m fine. He kept mentioning my relationship and attachment to my mum, as if hinting at some kind of attachment disorder being the reason I am the way I am. My negative experiences as a child are in no way the cause of why I am the way I am – my issues started from birth! I tried to point this out. He asked me why I didn’t go out unless I “had to” – I don’t know why but they all seem to pick this one apart. I don’t think he realised/understood that my psychosis is a real diagnosis. He said he didn’t like patients using Google and insinuated that it’s something I’ve guessed at. I pointed out that I was diagnosed at 11 by a top-drawer psychiatrist and prescribed a strong antipsychotic medication for it, which I still take to this day, so hardly a case of google-my-symptoms-and-panic. Let’s also not forget that we didn’t have the internet back then (1994) let alone Google! So I’m sat there answering his pointless and intrusive questions and praying for the hour to end when he says to me “you look like a rabbit caught in the headlights” – that for me was the only correct observation he made! He also commented that people with psychosis don’t normally have insight into their condition!?!?? He then proceeded to ask me why I had an issue with the label of Emotionally Unstable Personality Disorder – I said I didn’t if it was the correct label. If he thinks he can stick that label on me and magic away my PDA then he’s got a surprise coming! Another psychiatrist tried to stick that label on me when he refused to acknowledge my diagnosis of PDA. I fought and had it removed from my notes. I’m more than happy to do that again. Another rather interesting comment from him was “you don’t actually have a diagnosis of autism” – hmm…..that’s technically correct but seeing as I have a diagnosis of PDA, which is a type of autism, I don’t need a separate ASD diagnosis. This stumped him a little I feel. I also had to tell him that Elizabeth Newson had passed away 3 times before it sank in and also he kept asking me what her qualifications were……anyone would think he’d never heard of Google!

So now for the best bit, the reason for the title of this blog post, the reason why I’m so angry and the reason I was so fearful going into this morning’s appointment. The Ritalin issue. At the end he announced that “according to text books it’s unusual for someone of my age to still be taking Ritalin” and “that by now he would have thought my symptoms would have reduced”. With this in mind he went on to say that he wants to see me again in 6 months with a view to reducing the Ritalin and in time stopping it altogether! Shoot me now! I said it ain’t happening but he just told me not to worry and that 6 months is a long way off! WTF! I just about held it together until we got to the car. I still can’t believe it. I feared this would happen. I had a gut feeling but I hoped I was wrong. What gives him the right to walk (forcefully) into my life, judge me for an hour and the decide the rest of my life based on what a crappy (and probably outdated) text book says! This might sound dramatic but my life as I know it will end without Ritalin (or a very good substitute). I won’t be able to function. I will damage relationships again. I will become someone I don’t like. I won’t be able to think straight. To function. To manage. Even basic stuff will become a struggle. I will have 2 demons to contend with – the PDA and the ADHD. At the moment the Ritalin takes care of 90% of my ADHD symptoms, leaving me enough in the tank to handle the PDA side of things. Take the Ritalin away and I’m left with what??? 2 demons I know I won’t have the strength to fight day in and day out. I feel helpless right now. Sad too. I’m sad for me. I’m sad for the people I love and care about. I’ve been taking it for 23 years. It’s not fair. How can he do this?! As for his comment about 6 months being a long way off – really! Has he ever met anyone with PDA before?! Has he ever met anyone with ASD before?! 6 months is now logged in my brain, like a countdown to impending doom, and there it will stay until that dreaded day actually comes. I won’t be able to forget it and move on. It’s there now. Logged and counting down.

Not much else to say on this really other than I’m angry, upset, I hate shrinks even more now and I wish that they would leave me alone to live my life in peace! Not too much to ask is it?!

I’m now off to sleep before I call the GP to update her……

Hope you all liked the title 👍 – peace 💜

UPDATE

I spoke to my GP last night and she’s prescribed me Propranolol. It won’t help with the mental aspect of my anxiety but it should help with the physical side of my anxiety (chest pain, sweats and palpitations etc). She’s also going to request a second opinion for me. 👍

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