Self harm

All posts tagged Self harm

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. 👍

Warning – this post contains references to self-harm ⚠️

Well I guess from the ‘warning’ you can guess what the stupid thing is that I’ve done. Yes I’ve self-harmed. First time in like 9 years. I feel awful. Worse now than before I cut. I feel like I’ve left everybody down. I’ve gone backwards. I’ve given in and taken the easy route. If only that last bit were true – it’s far from the easy route. It feels like it at the time though. Just cut and watch the blood flow and I’ll feel okay again and in that moment I do feel better but that soon fades, only to be replaced with more upset. More pain. And now added to that I feel disappointment too. Frustration at myself for doing it. Why? Why did I give in so easily? I didn’t even think twice about it. I just thought cut and did. Just like that. It didn’t even enter my mind that this was in no way a good idea. Not once. I wish it had. It has done every other time I’ve felt tempted over the last 9 years but not today it seems. Today it got the better of me. Today I gave in. Today I made a mistake. What can I do now? The blood has stopped only to be replaced with pain. Emotional pain from what I’ve done and physical pain from the cuts themselves. Like all wounds both will heal in time but they leave scars. Scars to remind me I guess. Look this was then but not now. That time will come I’m sure but not for the moment. For the moment I feel miserable. I feel like I’ve undone all the hard work I’ve put in over 9 years. It’s all been for nothing. Next comes those ‘looks’ from family and friends when they find out what I’ve done. Those disappointed eyes looking at me and wondering if I’ll do it again next time things get too much for me. Staring and wondering. Then there’s the professionals of course. When they find out then wow the judging begins. Then it’s coming from all angles. Feels like a punishment for my crimes. Maybe that’s what I need. The looks of disappointment, the wondering and the judging. Paul will have to hide the razors of course. Temptation needs to be removed for now at least. Until I can trust myself again and until I can be trusted again. I think the most important thing in all of this is I know why I did what I did. To put it bluntly – too much stress and anxiety. Lots of factors have come together of course but the biggest culprit is my PIP tribunal which is taking place on Tuesday 5th Dec. We’ve been waiting for this date for 10 months and now it’s here I wish it wasn’t. I wish it would just go away. I feel so overwhelmed with it all. The pressure for us to ‘win’ is massive. We need that money to live on. I’ve been fortunate that they didn’t stop my money (just heavily reduced it) as I know some have had theirs stopped completely. We are simply disputing the amount. I feel like I’m drowning. It shouldn’t be this hard. I just want enough money to live on. Just basic living, nothing fancy. Today spiralled for me when I posted on Facebook how sad I am that I can not afford a tree or to send Christmas cards. That was the tipping point for me. The realisation that we really are that broke. I know I should be grateful for what I have and that’s why I removed that particular post. There are others far worse off than us and I realise that. Maybe I just needed to post that to remind myself. I also deleted it because I don’t like people seeing the vulnerable side of me. I like them to see the happy me. The masking me. The me that’s always joking. This side is darker and scarier. I don’t like to acknowledge this side. I like to hide this side. To be honest this side isn’t around too often. Normally it’s under control. Out of sight and out of mind. Guess PIP tribunals and the anxiety they cause are just too much. Paul knows what I did now and just asked me how I’m feeling. Less anxious is my answer. More emotionally unstable though. Not sure which demon is worse. I’m hoping that writing this will help me. It might also help you. I keep crying. Then laughing. Then crying again. Wish I could fix on one emotion and stay there. It’s exhausting. Now I’m feeling guilt. And shame. Lots of it. I’m scared that this post will upset people. I really don’t intend it to do anything other than help others to understand and perhaps even stop someone from doing the same. Please don’t judge me – I’m not in the mood. Just read and share this post and help others. Self-harm is such a taboo subject and I don’t think it should be anymore. If I can force myself to share something so personal with the world then we all really should be able to at least talk about it at home with our loved ones. Love and peace 💜

It’s been a while since I did a “your questions answered” post – today I cover self-harming, anxiety and friendships, amongst other things. I hope you enjoy. 😊

Sue – Have you ever cut yourself just to get a plaster or bandage? My son will threaten to cut himself and I know that’s for a reaction but this time it was different – he said he needed to have a cut to get a plaster. I said he could have a plaster anyway but he refused and said no – I have to have a cut for a plaster.

This is an interesting question. The short answer is no I never cut myself just to get a plaster. The longer and more detailed answer is I that did fake injuries that wouldn’t be visible, like sprains, in order to get a bandage and attention and any minor graze or bruise needed a plaster. I did this all the time. This led to a bad case of “the boy who cried wolf” when I fell whilst outside on my rollerskates and I did actually break my wrist but my mum, who was so used to me limping home and complaining of this injury and that injury, just said “there there” and chalked it up to me crying wolf again. It wasn’t until the next day that they realised I was actually really in pain and I was taken to A&E. This obviously led to me having a cast put on and of course I loved it as it meant 6 weeks of attention! This was all pre-Ritalin.

Melissa – Did you ever talk about self-harming so you couldn’t go to school/or do something? Does talking about it tend to lead to doing it?

This kind of follows on from Sue’s question above. I didn’t use self-harming, or the threat of, as a way to get out of school/avoid doing something but I did use injuries and illness in that way. I always had a tummy ache, headache, sore throat or an ear ache. Anything I could use to avoid, but that wasn’t visible, was used often. The self-harming didn’t start until I was about 11 and it wasn’t something that I threatened to do beforehand. I would simply go into my room or the bathroom and quietly cut myself with a razor blade. I often hid my cuts from others, only showing them when the pressure of hiding them became too much. I was cutting myself for months before anyone knew. For me cutting myself had nothing to do with attention or avoiding demands – it was simply a way to make myself feel better. Self-harming is certainly something I would never advocate but I won’t lie – it helped me to let go of some of the negative feelings about myself that I was harbouring. It was such an emotional release if that makes sense?

Simon – How can I encourage my 11 year old son to think about how his PDA is helping or hindering him in life? He is always saying I will never get rid of my PDA or PDA wins etc.

This a difficult one Simon. I think a good place to start is to talk to him about others with PDA. Let him see that there is hope for his future. At the moment he, like all of us at his age, can’t imagine being 12 let alone being an adult and it will be hard for him to ever imagine himself any different from how he is now. Remember this is all he knows and all he has to compare things to. It’s still important to let him know that he’s not alone though, even if it appears to fall on deaf ears. Have you considered getting a copy of Ruth Fidler’s new book Can I Tell You About PDA? for him to read in his own time. I wouldn’t push it with him as that will more than likely just cause avoidance but let him know the book is there if and when he wants to read. I would also recommend that any siblings read it too. As he matures he’ll naturally gain a much better understanding of himself in relation to his PDA. Love, time and support are most important and he needs to feel that you understand him (even if you don’t).

Alison – At what age were you able to start to manage the anxiety and recognise that actually you were being controlled by it?

Hmm….where to begin with this one! Even at the ripe old age of 32 I still don’t think I have that good a control of the anxiety. There are some days that it’s so bad that I literally can’t do anything. As long as I’m in complete control of everything then the anxiety is low but this of course is hard to achieve in real life, even as an adult. Life has a habit of throwing curve balls and then there’s the unforeseen things that can’t be predicted let alone controlled. All I can do is try to manage and juggle my anxiety and things that I need to do. On good days I do more and on bad days I do less. Sometimes this can change from minute to minute so it’s just a case of keeping an eye on things and then adjusting accordingly. It can be exhausting some days but it’s vital if I’m to continue enjoying my life. I’m not stupid – I’m well aware that anxiety, at times, controls me but I’ve accepted that there’s very little I can do about that. I just to try and keep the balance right and take the rough with the smooth. It’s not easy but then anything that’s worthwhile never is! I wouldn’t not have PDA – it’s what makes me me. 😊

Kay – Can I ask you about friendships? Have you had any problems making/keeping/sustaining them? The reason I’m asking is that my daughter is so sociable and makes friends very easily, but within a blink of an eye it’s over, usually with tears and tantrums. Obviously she doesn’t learn from past experiences and I fear she’ll end up lonely. Can you relate to this in your teenage years and how does it feel to live in such social turmoil?

I can really relate to your daughter on this one. I’ve always had a problem with friendships and I still do now to some extent. As a youngster I would become too attached too quickly and I was too controlling. As you can imagine other children didn’t appreciate this and they soon had had enough and the friendship was over. It was very difficult for me to understand at the time – you see I wasn’t meaning to be so clingy, aggressive or controlling, I was just simply being me. I do have one or two friends that have remained from childhood but they are special. They had a level of understanding and compassion that I would say wasn’t the norm for children, or even most adults! I hurt them but they understood and forgave, even though they, like me, had no actual understanding of PDA. It was upsetting, especially as a teenager, because I longed to be “normal” and having normal friendships was part of that dream. I felt like a failure. As an adult I’m still a terrible judge of character and I often make bad choices. I invest in friendships that most would walk away from – I just can’t see it until it’s too late. I’ve always afforded people trust right from the start when perhaps I shouldn’t. I realise that trust is earnt and not just given but I just can’t help it. As a child this “given trust” would often lead to other children taking advantage of me, and to some extent this continues into my adult life too. I just can’t see it happening at the time. I think my problems with friendships now arise from a mixture of me being awful at picking “the right people” as friends, my longing for acceptance and my desire to be valued. Despite all of these problems I’m far from lonely – I’m in a loving relationship with my soulmate, I have a great network of real life and Facebook friends and I have a very supportive family. My life has naturally evolved in such a way that I’m almost entirely surrounded by friends who understand PDA, on whatever level. I think this is key to maintaining healthy long term friendships. Try not to worry – we are some of the most loyal and funny people on the planet, your daughter won’t be lonely. 💜

Nicola – My son suffers from an “injustice trigger”, ie if there is an injustice, however minor, he cannot let it go and it builds and builds to a meltdown. If you are similar, are there any strategies you use to help you move on or let it go?

As a child I was the queen of holding a grudge! (And I still am to a certain extent!) If anyone wronged me, deliberately or accidentally, then I would make sure they paid and I would stew and stew, becoming angrier and more resentful, and yes this did often lead to meltdowns, either at the person in question or at someone innocent. As an adult this “injustice trigger” is much more focused. I can’t bear it if I see someone being bullied, I’m a great believer in freedom of speech and I won’t take any crap from authorities! When friendships go wrong now it does trigger my anxieties and I have to try at look at things objectively, which isn’t easy to do, but it’s necessary if I’m to move on. More often than not friendships fail because of a lack of communication – either they have an issue with me but don’t feel they can talk to me about it because I have PDA or I’ve misunderstood something they’ve said or done. Either way this always leaves me with an overwhelming feeling of injustice. From my point of view: it pisses me off that people think that because I have PDA that it renders me incapable of having a rational conversation or being able to see their point of view – that simply isn’t the case, in fact the complete opposite could be said. I’ve learnt to deal with these feeling of injustice by removing myself from the situation and looking at things objectively. I’m then able to see what happened and who was to blame. This process then makes letting it go and moving on much easier. I still hold grudges but I don’t necessarily act on them, I just deal with them. I’m very stubborn but I can say sorry and admit when I’m wrong. This is only something that I’ve mastered over time.

Thank you all for reading once again. Please don’t forget to like and share this post. 💜

Follow the link to read parts 1, 2, 3 and 4 of YOUR PDA QUESTIONS ANSWERED

Jane Sherwin’s account of life with Mollie, her daughter who has a diagnosis of PDA, is both extremely moving and informative.

Once I picked it up I was unable to put it down. As someone with PDA and with there currently being few books available about PDA, especially from the perspective of someone with the condition, it’s lovely to be able to relate and feel a sense of “fitting in.” Mollie’s journey continues to influence and inspire me. It really is a great addition to the ever-growing library of PDA books and resources. 😊

My hope is that this book will help to highlight just how difficult life with PDA is, both from our perspective but also for those around us, and open a few eyes to this very real condition. Life with PDA is no picnic but with greater acceptance and understanding things can and will improve.
This book not only gives a very personal account of one family’s journey but also gives some useful strategies, tips and above all: hope.

My Daughter Is Not Naughty is beautifully written, witty and takes you on Mollie and her family’s journey through heartbreak, triumphs, struggles, diagnosis and misdiagnosis and the eventual progress that Mollie has made. It truly is a must-read.

Buy your copy HERE

Thanks for reading 💜

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 9,600 times in 2014. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.

Invisible disabilities week 19-25th October 2014

Posted by juliadaunt on October 19, 2014

Posted in: REBLOGGED BY ME. Tagged: ADHD, Adult PDA, Anxiety, ASC, ASD, Awareness, Bi-Polar, Depression, Mental health, Obsessive Compulsive Disorder, OCD, Pathological Demand Avoidance, PDA, PDD, PDD-NOS, Psychosis, Questions, Self harm, Stress. Leave a comment

PDA is very much a hidden disability: Dinky’s mum tells you her side of the story in such a moving and inspiring way. Makes you stop and think……….

Dinky and Me

Sometimes it seems every week is another awareness week, or day.

The invisible disability is something I feel needs more understanding.
Whether that be PDA, ASD, ADHD, PTSD, Fibromyalgia, IBS… And countless more.

The way society views disability, actually disadvantages those with hidden disabilities, not only that, but also the negativity spouted about something people don’t understand is staggering.
People are more set to judge than wonder ‘what if?’

The hidden vs visible disability is something us parents of autistic children understand all too well. (And before the PC brigade come in… Yes my daughter is more than her autism as are the other wonderful people who just happen to have an autism diagnosis. But according to autistic people, they prefer to be called autistic people, it is as much a part of them as their other characteristics! So I shall listen to those whom I wrote about and address…

View original post 1,281 more words

This is a letter of complaint that I’ve sent to CAMHS in response to the horrific treatment that Corey has received. Although this letter pertains to one particular assessment Corey’s “battle with CAMHS” has been raging on for years. This beautiful young man receives no regular help or support from services apart from useless assessments such as this one. He’s also undiagnosed and unmedicated. His mother has given me permission to share this chapter of his story with you all.

Dear Dr T,

REF: Corey, aged 10.

My name is Julia Daunt and I am a good friend of Corey’s mum, Louise, and I was also present at his assessment that took place on 23rd May 2014 at Great Ormond Street Hospital. I am writing to you with regards to the assessment letter that was sent to Dr. P and I wish now to go through the letter with you and highlight our complaints and issues therein.

Firstly in your opening paragraph you state that “Corey’s behaviour is not in-keeping with PDA or bi-polar” and that “Corey’s behaviour is related to his insecurities and anxieties”. I wish to point out that it is my belief that Corey is insecure and anxious because of an underlying condition, such as bi-polar. No child is as insecure or anxious as Corey without good reason and cause, a point that you have failed to note. I do not see how on earth you can completely rule out bi-polar, PDA or anything else for that matter after an assessment lasting only 1 hour. Corey is a very complex case and I believe that he needs to be assessed over a longer period of time in order that a clear picture is made. He struggles to open up and trust “doctors”, hence the need for a longer assessment time, so that his trust can gradually be earned.

Corey suffers from what I would call severe lability of mood. This happens both at home and at school. School have noted more and more instances of quick mood changes and self-harm. He is also now telling his teachers when he hears the voices at school, whereas before he kept it to himself for fear of not being believed or being mocked in some way. It is my belief that your colleague Dr. S misunderstood Corey during the 1:1 assessment. Corey has denied that he said “he knows that the voices aren’t real” and I can confirm that he has, on more than one occasion, told me that he is very scared and wants the voices to leave him alone. It is my belief that Corey doesn’t have the understanding needed to know that these voices aren’t real. To him they are very real and very upsetting. I wish to take issue with “He finds these thoughts repetitive and intrusive but not constant” – what exactly does this mean? Corey hears voices every day so what part of that isn’t constant? There is no set pattern to what will trigger the voices either, which is also another pointer to a psychiatric condition, such as bi-polar, rather than a child’s stress-coping mechanism. “Corey then feels guilty about having these”, this isn’t the case. Corey feels guilt over his behaviour but not over hearing voices. With all due respect Dr. S spent about 10 minutes with Corey so how can she have gained such an insight into Corey in such a short space of time, especially when she also reported that for some of the 1:1 assessment Corey wouldn’t speak to her. “Corey’s mother stated that he hadn’t had the voices for a while” – well that’s wrong for a start! What she said was that Corey hadn’t had the visual hallucinations for a while, she said nothing of the sort with regards to his auditory hallucinations and as I have said before these happen on a daily basis. “Corey does get low in mood and at various points appeared low but this is not pervasive” – I would like to know what you are basing this on? Corey has had problems from birth which has been getting worse and worse over time and his behaviour runs through every aspect of his day-to-day living, including school. What part of that isn’t pervasive? Like so many children with symptoms like Corey’s many are able to keep a lid on these behaviours when they are out of their comfort zone but as they get older this becomes an all but impossible task for them and the behaviours show themselves more and more in a variety of different situations. This is commonplace and does in no way mean that behaviours aren’t pervasive. “Corey has scratched his arms in response to these voices but does not have further suicidal ideation” – how can you be sure of this after 1 hour? The incident that you are referring to happened whilst he was at school, so yet more evidence that Corey’s behaviours are present at both home and school. I would also like to add that Corey has told me that he wishes he was dead and I believe him. He’s tried, and succeeded at times, to cut himself with anything sharp that he can lay his hands on and threatened to jump out of the top floor window. He has also put plastic bags over his head and tied things around his neck when he was alone in his room. Louise was only alerted to this by Corey’s older brother who thankfully and by accident just happened to notice. Yet more proof that Corey’s self-harm isn’t attention-seeking based. Corey is suicidal.
“His mother reported that Corey threatens to harm himself when wanting his needs met” – I would like to disagree with this statement too. You make a lot of reference to Corey threatening to harm himself when wanting his needs met which comes across like you are trying to say that Corey uses these threats as a conscious act in order to shock and worry his mother into giving him whatever it is that he has asked for, which is utter nonsense. I believe that Corey isn’t in control of the voices or the things that they tell him to do, like self-harming, and therefore it isn’t possible that uses them as a way of blackmailing his mum. Corey has also expressed relief and says it helps him after he has self-harmed, which again is another pointer that was missed.

Corey is a very intelligent young man and I don’t believe that his dislike for school or the work involved has anything to do with his ability to understand or complete the tasks expected of him but is more likely due to his problems. He feels isolated because he’s different. Other children don’t understand him. I’m getting a little concerned that you keep referring to the fact that Corey “smashes up his room when he doesn’t get his own way” like he chooses to do it so he can get his own way. This simply isn’t the case at all. I’ve seen firsthand what happens when Corey is in meltdown and I can assure you that this isn’t a case of just another attention-seeking brat. Yes Corey does swear at his mum but you’ve failed to mention that during the assessment he called Dr. P a “fucking idiot” and he also told one of you that you were “a fucking c*nt”. He also swore at me, the taxi driver and people on the coach. Why did you feel it prudent or helpful to only write that “it was noted during the interview that he swears at his mother” like his behaviour is only limited to her or somehow down to her. Maybe you should take a look back over your notes. I completely refute that “Corey lacks remorse”, Corey is full of remorse and pain for the things that he says and does and if you had spent anytime actually talking and getting to know him rather than just grilling Louise you would have seen that.

Just for the record Louise’s history, such as her mothers death, has absolutely nothing to do with Corey’s behaviours or means that her parenting is nothing short of brilliant. I have watched them both closely on my visits with them and all I see is a very loving mum trying to help her son who is quite literally begging for help. Please stop insinuating that Louise is somehow responsible for Corey’s problems or we will be forced to take this matter further. I would also like it noted that Corey sees his father regularly every other weekend, not intermittently as you’ve stated, and his father lives in Taunton not Bristol.

Corey struggled during the assessment and his behaviour deteriorated, in fact at one point he walked out with me following and I had to cuddle him so he could compose himself in order to rejoin the group. He also threw a piece of metal out of the window but yet you made no reference whatsoever to any of this in the report. Why? It’s more proof that his behaviour isn’t just limited to home as you seem to keep implying.

Louise spent 6 hours completing an online form prior to the assessment that you requested her to do but yet you failed to look at this before the assessment. Please can you explain the purpose of this? Was it just to waste her time? We travelled a long way, Louise spent over £200 traveling from Bristol to London which she cannot afford and most importantly Corey was subjected to added pressure and stress which he can well do without and all for what? So we can be fobbed off? I don’t think so. I would also like to add that a few days after the assessment Louise rang Dr. G with a question but he has yet to return her call or make any form of contact with her. Yet another failing for this family. How bad do things have to become before you act?

I am both horrified and disgusted at the way Corey has been treated throughout his dealings with CAMHS. It is my belief that this treatment is nothing short of a complete dereliction of your duty of care and this cannot continue. Corey needs to be fully assessed and, in my opinion, medicated. It is my belief that he has ADHD, bi-polar and OCD and I am not alone in this. He does not want to ever see Dr. P or PB ever again so you will have to refer his case to someone else I’m afraid. Corey is in a very delicate state at present and it will not do him any good to see people he neither likes or trusts as he will just shut down and become aggressive. You must refer him.

I think that you should write to Corey personally and explain why the help that we all told him he would get now isn’t coming. He has very little faith left in doctors and we cannot disappoint him again. Corey is next to be seen by CAMHS in October and not the weekly basis that was discussed during the assessment. This isn’t good enough! He needs intensive therapy and treatment. He is suicidal and his behaviours are becoming harder to manage. This is an urgent matter.

You have 10 working days from the date of this letter to reply otherwise we will be lodging a formal complaint.

Yours,

Julia Daunt

So that is my letter. Corey has a special place in my heart. I think it’s because I can relate so much to what he is experiencing with the voices and the self-harm. I feel his pain and it breaks my heart to hear him say to me that he wishes he was dead knowing that he really means it. What is it with CAMHS? Can’t children be depressed or suicidal? There’s no minimum age for goodness sake! Mental health disorders are just like any other medical condition or illness – they know no limits or boundaries and can and do happen to anyone at anytime. Children are suffering and why? Budget cuts? Poor training? A doctors unwillingness to learn or write a damn prescription? Refusal to grow a pair and diagnose when others won’t? I don’t get it! It’s not just Corey’s childhood that is being lost here, it’s possibly his whole life. I will fight for Corey. I will fight for us all. Corey can not become just another headline and statistic………

Thank you for reading. ❤ Please share. X

As promised here is ‘part 2’ of your questions answered. I’ve tried to answer them all as honestly as I can. I’m already working on part 3! 😉 Enjoy. 🙂

Kay – What does it feel like before, during and after a meltdown? Do you feel any remorse/guilt for the things you’ve said or done?

This is an interesting question and one that will have quite a long answer so please bear with me. 🙂 It’s quite hard to put into words the feelings before a meltdown as 9 times out of 10 I don’t see it coming but the ones I do see coming are usually caused by a single event, such as being in a busy supermarket on a Saturday afternoon (!) The others tend to creep up on me and tend to be as a result of many single events all culminating in a meltdown. When in the grips of either meltdown I feel an intense feeling of being overwhelmed. Like I just cannot take anymore and if I were to stay in this environment then I might quite literally explode. I also experience very intense feelings of fear and panic, like everything is out of control, which make me even more anxious than the demand or event that actually triggered the meltdown in the first place. After an instant meltdown I feel embarrassed because I wasn’t able to keep a lid on things and stay in control. I hate the feeling of failure that follows because I couldn’t cope and I’ve had remove myself from a situation. I’m also left feeling physically and emotionally drained, like I’ve been awake and on the go for 2 days, which normally results in me needing to spend a day or 2 doing nothing but watching TV and sleeping. When it’s a built-up meltdown I feel all of the above but I also feel intense guilt and shame at my actions. You see when it’s a built-up meltdown I don’t normally see it coming and it catches me off guard and means that I often flip and lose my temper with Paul. I end up saying and doing things that I know erode our relationship more and more over time and it kills me that I hurt him but I just pray to God that he understands. I can be really vile and I hate it. Remorse and guilt are feelings that I know all too well – I hate hurting the people that I love. Meltdowns are one of the few times that I ever wish that I was “normal”. 😦 Thankfully though they are becoming less frequent and I’m getting better at pulling back once I’ve started in meltdown but sometimes I just simply can’t control it but perhaps with more time and practise I will. 🙂

Anne-marie – What has been helpful/supportive? Also friendships, do they get easier as you get older?

The short answer is love. The longer answer is the love and support I receive from Paul, my family and my friends. I couldn’t manage without it. In the dark periods I need to know that I am okay, that it is worth fighting and that I will be okay which I couldn’t do without this support. Just knowing that I have a group of people around me who don’t judge or hold a grudge is so important.
As far as friendships go, yes I do think that things are easier now I’m older, although like most people I still get my fingers burnt from time to time. I tend to trust people far too much from the outset rather than having them earn my trust and this, as I’m sure you can imagine, has led to my being taken advantage of. I like to think that one of my best qualities is that I’m extremely loyal. I have a great group of friends now, all of whom are PDA aware, and I think that’s the most important thing and which I’m ashamed to say was lacking from my friendships in the past due to my own preconceived ideas. I hid my diagnosis but I’m pleased to say that I don’t anymore. 😀

Kaz – I would like to know what was the most helpful thing for you as an adolescent that helped you make the transition to adulthood and what as parents we can do to make our kids lives a little easier?

For me I would have to say that what helped me the most was Ginny my outreach worker. She was provided by Social Services to spend time with me for 5hrs per week. I used to go to her little cottage and we would sing, play the piano and violin together, do crafts, cook, play cards and we also worked on fitting out a dolls house together. She was amazing and came into my life at just the right time. She helped me to see that it was okay and that life could be more than just a long list of negative and bad behaviours. I am still in contact with her to this day. 🙂 Another person whom I owe a big debt of gratitude to is my home tutor Lizzy, who I am also still in contact with. She made me feel safe and showed me that I could fit back into a school environment and do well. I don’t believe that without these ladies I would be half the person I am today even though when I met them neither one had ever heard of PDA before. They took the time to follow my lead, to learn from me and didn’t judge me too harshly. They gave my mum the break and support that she also needed and allowed me to grow and to navigate the rocky road from teens to adulthood.
I think that as parents it’s vital that you talk to your children, explain things as much as possible, talk about PDA with them and make time for yourselves too. Self-awareness is really the key to PDA – without it, the road of life is much harder to travel. 🙂

Stacey – What would your ideal partner be like? What’s the recipe for a sucessful marriage/relationship?

I’m very lucky as I can wholeheartedly say that I’m with my ideal partner. 🙂 Paul is amazingly supportive, although he is far from perfect and we do have our ups and downs like any other couple, he really is my rock. I don’t know where I would be without him. We met nearly 10 years ago on
Match.com and we just clicked. Suddenly it all made sense: this life. We are complete opposites but that’s what makes it work because what each other lacks the other has in abundance. 🙂 I’m not sure if there is a real recipe for a successful relationship but of course communication is vital and so is laughter. I truly believe that there is that ‘special someone’ out there for each and everyone of us, no matter what is in our past or what difficulties that we may or may not have. 🙂

Caroline – What is the most helpful things that can be done to maintain self-esteem? Is depression an issue, now or in the past?

For me self-esteem was completely lacking from my life until I met Paul, for a number of reasons really. 1. Men weren’t to be trusted, ever. 2. The damage that such a late diagnosis and mismanagement had had on me and 3. General issues arising from being overweight. Although I say it was completely lacking there were times when it was there in my teens but it was soon stripped away again when something went wrong, as it tended to do. I think that it’s vital to hear those 3 words: I love you. Sometimes in the midst of chaos it can be overlooked and forgotten about. I truly believe that self-esteem comes with self-awareness and self-understanding. I beg you, talk to your children.
Yes, I would say that depression has played its part in my life. I have often considered ending it all, I’ve self-harmed a lot over the years and I did once try to commit suicide. Thankfully I’m in a much happier place now than I have ever have been before and depression seems to be a thing of the past, touch wood. The urge to self-harm never really goes away and I still have to remind myself that I can’t when I’m feeling low. I think I’ve dealt with a lot of the ghosts from my past and put a lot of issues to bed once and for all. I think that helps – the past can be more damaging than the present. I wish I had the magic formula for this because I could make a fortune! I’ve just been incredibly lucky to have been blessed with an amazingly supportive partner, family and friends. Don’t get me wrong I’m not perfect and I still have days when I wake up and I can’t face whatever the world has in store for me today but I just have to keep going and ride those days out so that the good days can come.

Clayre – Is there anything that could of helped you more as a child? Also how have you dealt with issues like work, and have anymore serious behaviour issues arrisen?

For me there is only one answer to this and that is: early diagnosis. I sometimes wish that they had seen it sooner because perhaps I wouldn’t have as many issues as I do now and perhaps I wouldn’t have experienced some of the shit that I did but then, on the other hand, I wouldn’t be who I am now if I hadn’t have experienced what I did. I do think though, that no matter what the diagnosis, sooner is better than later. Support is vital too.
Work is something that I’ve never done, well not in the traditional sense of the word anyway. When I was younger I studied for a diploma in preschool practice, for which I had to work in a preschool 3 days a week, but I wasn’t able to cope with the demand to finish coursework so I had to give it up. That was when I was 16 and I haven’t worked since. I just can’t do it. I’ve tried – I’ve had a market stall twice, once selling my hand painted glass and the other selling my handmade cards, but I soon found that demand too much also and had to stop. There was a time in my life when I used to get angry at myself because I can’t work. I felt like a failure and that I wasn’t contributing anything to society. I’ve made my peace with all of that now though and I’m okay with it. I might not be able to ‘work’ but there are other ways I can contribute and feel like a valued member of society, like writing this blog and answering your questions. 🙂

If you have any questions then please feel free to message me. Peace. X

Read PART ONE now! 😀

Over the past few months many of you have submitted questions to me and in this post I’m going to try and answer them as best and as honestly as I can. I hope that my answers will give you a little bit more of an insight into PDA, and in turn your own children, but most importantly offer that ‘ray of hope’ that we all seek, so here goes nothing….. 🙂

Carolyn – How does your attitude to being told to do something differ from when you were a child?

My reaction depends on so many different factors like my mood at the time, who is demanding something of me, why they are doing it and how often they’ve made demands of me before. All these factors, and more, play a role so this is a difficult question to answer. If it’s a ‘needed’ demand like hospital staff telling me what they need me to do or what medication I need to take then I’m pretty good at following orders because I know that it’s for my benefit and wellbeing in the long run to comply but I do have to make a conscious effort to suppress the anxiety and I’m not always successful. If it’s a friend or someone in need then I’m often able to push that anxiety down and do what ever it is they ask of me but again not always. If it’s an unfair/unwarranted demand then I simply react by saying no and refusing to budge. People tend to give up at that point but I guess if they were to continue to make the demand then I would have to remove myself from the situation or it might get out of control. Some days though all demands are simply too much. Demands, on the whole, are easier to deal with now I’m an adult because naturally I have far more control over my life than I did as a child. I still cannot cope with being lectured or having a long and ranting list of demands reeled off at me. If you want me to comply ask me nicely and you are more likely to get the desired result. 🙂

Tom – I’d like to know about the transition period – i.e. moving out of the family home and setting up independently. How was this planned for? What support did you have or need during and after the move? What parts were hardest? and what would you do differently if you could do it over again?

I currently live in the annexe to the family home with my partner. I did move out once for about a year when I was 17 or 18 with my ex but we had to return to the family home due to him running up a large credit card debt and me being miserable as a result. As far as I can remember there was no planning on the part of my mum. At that point I was independent and able to make my own decisions and choices. The idea of the annexe was so that we could reduce his debt rather than forking out £400+ a month on rent but he left me less than a year later because he met someone else but thankfully he took his debt with him. 😉 I then remained in the annexe and then I met Paul and he later moved in with me. We’ve been together for nearly 10 years now. We have considered moving and in fact we did move to Wales for 2 days in 2013 – yes, 2 days! We had to return because the property was damp and none of the works that were meant to have been carried out before we moved in had been. We are currently still trying to get our money back. 😦 Although we live in the annexe we live independently. We manage our own money, bills, cooking, cleaning and lives. The whole living next door to mum and dad thing is by no means perfect and we do have rows like all families but on the whole it works well for all of us. The ‘move’ to Wales has left a nasty taste in my mouth but perhaps we will try it again one day. The act of moving is a nightmare! I hate not knowing where my things are. I have to make a list of what is in each box otherwise I would go mad! 😉 It’s safe to say I hate moving, but doesn’t everyone? Perhaps it’s worse for me because the process of finding a new place to live, organising and planning, packing up an entire house and then setting it up again at the other end all leave me feeling pretty helpless and out of control and that isn’t a feeling I can handle. I just had to focus on the bigger picture. Paul had never moved a whole house before and he needed me to be strong and organised. You see when he moved in here with me he moved out of his family home so our ‘move’ to Wales was his first ‘proper’ move. I also think that my stepdad being in the RAF/MoD helped as we had moved quite often when I was child. I’ve moved 10 times in total, which isn’t a huge amount, but it’s enough. Neither one of us could handle doing it again yet. I hope this makes sense – it’s a bit of a ramble. 🙂

Gillian – Why does anxiety rule your life?

That’s a great question but I also think it’s an impossible one to answer fully. You see to me feeling anxious over demands is as normal a reaction as crying when in pain or laughing at a joke. There’s no explanation – it just is, it always has been and always will be. We are hard-wired to become stressed and anxious when demands are made of us – this is just the way we are made. Now I’m not saying that because it’s always been and always will be that I’m happy or comfortable with the high levels of anxiety I feel but there is very little I can do about them. All I can do is try to reduce all unnecessary demands so as to keep my anxiety at a manageable level but it wouldn’t take much to push me over the edge. A scenario I’ve used in the past is this: you and I are both given a bucket and someone keeps pouring in equal amounts of water (demands/anxiety) into each bucket so consequently the buckets begin to fill up, the only difference is that your bucket has tiny holes in it so it never reaches the top and spills over unless the water in was to become greater than the water out. My bucket doesn’t have these holes and so can therefore only ever spill over so I must try and reduce the water in so it doesn’t overflow but at some point my bucket will be full and I will go into meltdown. That is a fact. It really is a daily balancing act. Some days are better than others. I’ve accepted that I have my limitations and that’s okay. I’m not perfect but then who is! 😉 I hope this makes sense and helps. 🙂

Annie – How do you control your anxiety and what do you do to prevent a meltdown?

I think I’ve answered part of this in the above question but I can elaborate further. Every day I must make choices on what ‘demands’ I can cope with. On a bad day that might mean that even brushing my teeth is a demand too far. If I am having a bad day I just do what I can and I won’t push myself because if I do it will just make things worse. If I’m having a good day then I am able to push myself and I will have a fairly ‘normal’ day. There’s really no way of predicting when I will have reached my limit or when my bucket will overflow to carry on the analogy from before, I just have to be prepared that it will happen at some point and I need to deal with it when it does. What I find interesting from speaking to parents is when they say “we only asked him/her to brush their hair and they went into a 3 hours meltdown” – you do realise that the hair brushing demand was more than likely simply just the straw that broke the camel’s back. It was the trigger for the meltdown but it wasn’t the cause. 9 times out of 10 the cause of my meltdowns is an accumulation of stress and anxiety and not one particular event. My meltdowns tend to be far more internalised now than when I was a child. I tend to cry, switch off and sleep a lot when I’m in meltdown. The only way I can reduce the chances of having a meltdown is to reduce my triggers and if I am in a stressful situation, like Morrison’s on Christmas Eve, then I simply walk out and sit in the car because if I had stayed then I would have completely lost it and I couldn’t face doing that in public. I think I would die of embarrassment! I haven’t had a public meltdown for about 15 years and it’s not something I’m prepared to go through again if I can help it.

Hazel – Are u really happy, as in within yourself?

Yes, on the whole I am very happy. Of course I have times when things are hard and sometimes I feel like I can’t go on but thankfully I don’t stay in that dark place for very long now but it is a place I visit from time to time. I also have times when I hate PDA because of how it limits me and makes me feel but I just try to muddle through until I come out the other side. I am incredibly lucky – I have a great partner, a great family, on the whole, and a great group of friends who keep me ‘up’ when I need it and who don’t ever judge me when I need time out and can’t do what I normally do or what is expected. They just understand. It’s a shame there isn’t a bit more of that understanding in this world. What makes me happiest though is helping people and I feel blessed to be able to do so – that makes it all worthwhile and gives my life some focus and a purpose. 🙂

Lynsey – What has been the most influential factor in your life that has helped you cope with PDA and lead a more ‘normal’ and happy life. E.g. a particular therapy or activity? Have you had any epiphanies that have led to you being able to cope more and if so what were they? Are you able to work/hold down a job when you are not the boss? What types of friends suit you, how did/do you overcome the barrier faced by PDA kids/adults to adhere to ‘normal’ social rules? Does this seriously affect you as you get older or can you learn to cope?

Wow, where do I begin! 🙂 Well I guess the most influential ‘therapy’ I ever had as a child was my outreach worker, Ginny. I used to spend Fridays with her. She taught me to cook and encouraged me to be more arty. She really helped to rebuild my confidence and self-esteem that had all but been wiped out by years of feeling like a freak, endless public humiliation due to my behaviour and being expelled from school. I’m still in contact with her now. She’s amazing. 🙂 I would also say that Paul has been an incredible source of strength for me. He’s made me see that it’s okay to be me and that I am loveable just the way I am. 🙂 I have tried conventional therapies, such as CBT, but I found them no use whatsoever. I guess it’s an individual thing and will work for some but not for others.
The biggest ‘epiphany’ I’ve ever had happened a few year ago. I was still keeping my PDA secret from the masses and I just decided to google PDA and ‘ting – lightbulb moment!’ – I wasn’t alone! You see I had always been told that PDA was so rare and that there were no others like me! Oh, how wrong they were! So I cried and then joined the PDA Society, or the PDA Contact Group as it was called then. It was amazing! I felt so empowered! I then decided that I had a sort of duty to share my story but I also wanted to find other adults with PDA so I set up the Adult PDA Support Network on Facebook and waited and slowly but surely adults with PDA joined! 🙂 It’s snowballed from there really. It was my friend Jane who gave me the push and inspiration to take to blogging and public speaking so we have her to thank for that. 🙂 As far as coping better goes, this had naturally happened over the years, despite me keeping my PDA a secret, and so has always been an area of continual progress and improvement.
Work…..there’s an interesting topic! I’ve never worked. I’ve volunteered in charity shops and in playgroups and I’ve done odd jobs for friends. I’ve also had a market stall twice before selling my hand painted glass and then my handmade cards. I’ve also been a Body Shop at Home rep. I’ve tried to dip my toe into work but it’s something that I don’t think I will ever be able to do as it causes me way too much anxiety which leaves me unable to function on any level. It’s just not worth it. I used to beat myself up about it but not anymore now I’ve found another way of being a valued and productive member of society. I’ve realised that it isn’t so bad. I do have a lot to offer after all. I’ve finally found my place and it feels great! 😀
I get along with most people but since my ‘epiphany’ I tend to gravitate towards people who have a link with PDA already. I also found that once I told my existing friends most of them said ‘yeah and?” and just accepted it and me. I did lose friends when I went public with my PDA though. That was extremely painful at the time but if they were really my friends in the first place then they would have least tried to understand and not cut me out of their lives completely. As far as childhood and friends goes that was an interesting time! I only had a few friends that have lasted throughout childhood and I wasn’t invited to parties often. I was a volatile child so most children tended to be extremely wary of me and keep me at arms-length. I should add that for most of my childhood and early teens *ALF was my best friend and I acted as if he were real. I went everywhere with him, told him secrets and would become upset when people didn’t say hello to him. Interesting how I wrote “I went everywhere with him, rather than he went everywhere with me!”
I can comfortably follow normal social rules now but that hasn’t always been the case. It’s just something that has happened slowly over the years. A case of trail and error. I have found that as I’ve matured and become self-aware that my social skills have evolved from purely self-preserving and self-motivated social skills that I used to evade demands and expectations into real and proper social skills. It’s funny because now I’m a stickler for following the rules socially – I can’t bear it if people are rude and impolite. I’m also a stickler for following the letter of the law although I always have to just put one toe on the grass when the sign says “keep off the grass” and I always touch to see if the paint really is wet! I just can’t help myself! 😉

I hope this has been helpful, informative and has opened a few more eyes to living with PDA. I’ve thoroughly enjoyed writing it and hopefully I will be doing a few more posts like this over the next few days and weeks.

If you have any questions you’d like me to have a go at answering then please contact me and helpfully I’ll be able to help. ❤

*This is ALF. He’s still really important but not in a Norman Bates way anymore! 😉

Read part 2 now! 😀

120 HOURS

Posted by juliadaunt on April 19, 2014

Posted in: ALL POSTS, MY MENTAL HEALTH. Tagged: ASD, Autism, Autistic Spectrum Disorder, Mental health, Pathological Demand Avoidance, PDA, Psychosis, Self harm. 11 Comments

I honestly do not know how I have survived the previous 5 days without losing the plot entirely! I feel so emotional right now when I look back on what’s taken place in the last 120 hours……..

Monday

I was due to have an MRI at our local hospital. I’ve been undergoing numerous tests to try and get to the bottom of the chronic headache and other neurological symptoms I’ve been suffering from for just over 6 months now but so far with no success, other than identifying 2 cysts in my brain which are apparently not the cause of my problems. Cancer has already been ruled out so that’s one good thing at least. 😀 Anyway I’ve already had 2 MRI scans previously so although I’m worried I’m not that scared. This time however they are scanning my spine and not my head so I have to be further into the machine than I’ve been before and I’m not sure how I’ll cope with this so I took a Largactil beforehand to “take the edge off”. So Paul and I arrive at the MRI unit and I prepare for my scan – confirm I don’t have a pacemaker and I’m not pregnant, change into a very unflattering hospital gown and walk into the “room of doom”. I lay on the “bed” – they call it that not me, it’s not a bed at all – far from it in fact, it’s more like a rock hard plastic trolley but there you go. I like the smell of this room. Air-conditioned smells clean to me. Comforting. Anyway in I go and BAM! I panic and start crying. They pull me out. I can’t speak! I didn’t even make it half way in. I can see Paul watching me and I can feel his worry. So we try again – slower this time and a little bit further and again BAM! I can’t breathe! It’s too small! Get me out! So out I come. I’m sobbing now and shaking all over. I can’t do this! She asks me if I think I can do this today and I say let’s try one more time. I tell them to ignore any noises I make and only remove me this time if I press the panic button. Deep breath and in I go. I close my eyes. I’m still crying. I can feel my arms being pushed into my sides as I enter the tunnel. I open my eyes and see that the roof is only a few inches from my face. Blue and cold. Then my chest tightens as my hands and chest are now in contact with the roof. I try to move my hands but I can’t. I feel the nurse touch my hand but I can only move my fingers. Dear God, help me! I try to focus. This scan needs to be done. I’m in safe hands. Just breathe. I can’t breathe! Help! I’m being crushed! Get me out! I push the panic button and out I come. I’m shaking from head to toe. I’m sweating. I’m sobbing. I can’t do this. I don’t understand – I’ve had two other MRIs and didn’t have all this trouble. 😥 I apologise to everyone for wasting their time. I feel like a complete prat. I’m such a big baby. What happens now? Home I guess……. 😦

Tuesday

Off I go to the hospital for an “eye test” that the neurologist has arranged. Paul drops me off this time. He’s got to work and it’s only a simple eye test so I’ll be fine on my own. I know that it’s just an eye test because I rang and checked. So I walk into this hot and stuffy waiting room. I look around me – one window, which is closed. I look up – air-con vents that are off. 😦 So I sit and wait. People are coming and going. Noise and fluorescent lights. So I’m taken into a room for, what I believe is the only test I’m here for, an eye test but oh no, this is just the first of many! WTF! How am I meant to cope and process all this if I’m not given the facts beforehand! That’s not asking too much is it?!! I was in there a total of 2 1/2 hours! Wait. Eye test. Wait. Visual field test. Wait. Examination of my eyes by the doctor and he puts some drops in to enlarge my pupils – ouch, that stings! Wait. First set of photos of the back of my eyes. Wait. I’m so hot now I’m sweating and I think I’m going to faint. Second set of photos. Wait. Second examination of my eyes by the doctor, then he tells me my eyes are normal and that I can leave. FFS! My eyes are killing me. 2 1/2 hours of camera flashes centimetres from my eyes, flashing lights, busy waiting room, noise, smells, hot and stuffy. My head is killing me and all to be told “normal”. 😦 I am pleased that my eyes are fine but I can’t help and be disappointed that I’m still no closer to an answer. I don’t know how much more of this I can take. 😦

Wednesday

This was the day of the much dreaded second of my lumbar punctures. 😥 This time though we had to drive all the way to Exeter. 160 mile round trip. This is where things really fell apart. 😦 I, again, took a Largactil to quieten me down and relax me a bit. We arrived on the ward and were greeted with the vile stench of shit (no other way to put it I’m afraid) and the air was heavy and hot (95 deg) so combined with the shit-smell it made me feel quite unwell. We were expecting them to show us to a quiet side room, which I had been assured would happen and was available but they tried to insist that I wait by my bed. Finally, after showing them my autism alert card we were shown to the quiet room, which was a windowless box room. Anyway, we sat and waited only to be asked to move so they could talk to some relatives in private – that’s fine and understandable but they then told me that I could either wait by my bed or stand in the corridor, so we stood by the nurses station. 😦 Finally we met the registrar doing the LP only to be told that the LP was going to be done on the main ward (last one I had done at NDDH was done in a side room). I wasn’t happy about this but I went along with it. So we reached the bed and the registrar kicks up a stink about Paul staying with me throughout but she finally relents. So I lay on the bed and I try my hardest to curl up enough for her but she barely gave me a chance to do it before she was barking orders at me. I should add that she’s about to start the procedure at this point but I still haven’t signed a consent form. Also she went through none of the social niceties that you’d expect – I didn’t even know her name! 😦 So I’m laying there and Paul’s standing (no chair) and she’s prodding my spine and I’m wincing in pain and all she can say is “stop moving!” over and over again. I should add that one of my problems at the moment is severe lower back and hip pain – she never once noticed I was in pain – she just kept saying “I haven’t started yet”. I also wasn’t allowed a pillow which caused my head pain to rocket so by now I’m in excruciating pain and in floods of tears so she asks Paul if I’m okay, like I’m not capable of saying how I feel or something! I lost it at this point and we left. 😥 I’m sick and tired of hospitals not even trying to understand. 😥

Thursday

Wow, I’m physically, mentally and emotionally exhausted. 😦 I spent most of the day asleep or doing very little. My back is still so painful. 😥 Whatever that bitch of a registrar did to me yesterday, it ain’t any better today! I wrote a letter of complaint to the Chief Executive of the RD&E about what went on yesterday. I’ve given her 15 working days to respond. I’m mad as hell! 😡 All I want is to have access to medical treatment. The same medical treatment that others take for granted is, at times, impossible for me to have unless some small adjustments are made. It’s not that big of an issue. I’m not asking them to come to my home and perform these tests in my kitchen! Lol. I’m only asking that they find some quiet corner, away from the masses, to perform them in – preferably with a fan or a window. That they explain everything to me beforehand and that they try not to surprise me. That they ask things of me rather than bark orders at me. That’s not too much is it?!! Clearly it is for the NHS! 😡 Perhaps my “I ❤ PDA” tattoo isn’t enough, perhaps I need to have the words I have PDA tattooed on my forehead! I feel so burnt out. Spent. Old. Tired. My body is failing me and there’s nothing I can do to stop it. I ache. I hurt. Enough. It’s hard to keep going. To keep smiling. To keep positive. Enough.

Friday

Well that was the worst night of my life! 😥 I awoke at 1.30am in the grips of the worst psychotic episode that I’ve had in my entire life! I’ve never been so scared in my life! The thoughts I was having and the things he was saying to me are some of the darkest I’ve ever had. It took all my strength and willpower not to reach for that razor. To feel that blissful release as the blood begins to flow. To watch all that negativeness and evil flow out with the blood. To regain that control that I’ve lost. The control that this voice steals from me. It would be so easy just to let go. 😦 Paul and mum both got up to try and help me through it. I had to call NHS Direct for some advice. The pills weren’t working. I could feel my grip of reality slipping. He was winning. I was thinking that ending it all might be the only way out. 😥 So I called them. They wanted me to go in for a “psychiatric evaluation” but I declined. I knew what this really meant. I wasn’t about to allow myself to be sectioned! The doctor told me to take more Largactil, bringing the total to 100mg by 4am, and to “call back if I had any more problems”. The doctor also giggled with excitement when I ran through my “list” of medical problems and then commented “ooh you do have a lot of interesting things going on at the moment”, he did apologise for this. The most Largactil I’ve had before in one night is 75mg. I could barely walk! I finally passed-out on the sofa with Paul at about 5.30am. 😦

I didn’t surface until just gone 11am. The Waitrose man had already delivered our shopping but thankfully Paul dealt with most of it. Thank goodness I had the idea to place the order last weekend or we’d have no food now or the energy needed to get some, so that’s one thing that I got right this week. I feel sick. I feel like my insides have been raked out. I can’t eat anything. I keep thinking about how close I came last night to doing something silly. 😦 I want to cry but I’m not going to. If I can just make it through today. Focus. By 2pm I was back on the phone to NHS Direct and I’d had to take another Largactil, bringing the total in 12 hours to 125mg! Eek! The doctor also told me to take another 25mg before bed tonight and to take it morning, afternoon and night until the Bank Holiday is over and NHS services return to normal. How much more of this “episode” is there to come.(?) I hate the way I am sometimes. I just want a quiet life. Paul deserves a quiet life. I tried to admin the groups as best as I could today but it wasn’t easy. It was nice to have something simple to focus my mind though. I will not let him win. The control will be mine again soon……..I hope. I slept from 5pm until 7pm. Paul couldn’t go out, as he had planned, because he needed to stay at home “just in case”. I hate what this does to him. 😥 I hate seeing that look in his eyes as he looks on helpless as I suffer. He’s the only thing that makes the fight worth fighting when it’s as bad as this. I put all my efforts into thinking about him. Focus. Paul cooked us some dinner but I couldn’t eat more than a few mouthfuls. Largactil removes all my appetite. It makes everything happen so slowly too – like a tape that’s playing in slo-mo or something. It’s like being stoned x10. Everything is an effort. Walking, talking and even chewing food just feels like it’s too much. Largactil completely numbs me. I just sit or sleep and wait for it to be over. I took the last Largactil of the day at 10pm, bringing the total in 24 hours to 150mg. That’s more than I normally have in a week! 😮

That was my 120 hours of hell and hopefully I’ll never have to repeat them.

So it’s Saturday now. So far I’m doing okay. He isn’t around. 🙂 Fingers crossed. I’ve decided not to drug myself for the rest of the weekend, like I was advised to, but instead I’ll just take 25mg at night “just in case”. Night time is when I’m more vulnerable and likely to have an episode anyway. I think I need to talk to “someone” but there’s no point – NHS shrinks are crap in my experience – stupid opening questions like, “How are you?”, with a sarcastic tone and the moment you answer they look down and start writing! No thanks! Stress is a massive trigger for my episodes and there’s no doubt in my mind that the events of this past week have caused the shit to hit the fan now. I can’t do it anymore. 😦 I need someone to help me. I can’t go through that again – not the hospital experiences or the fall out that followed. 😦 I blame them all. I blame my neurologist for not giving enough warning to the other departments and his colleagues that I have PDA/additional needs. I blame the receptionists who gave me the wrong information. I blame all staff, with the exception of one nurse and the MRI department staff, for not being ASD/PDA aware after I called ahead of time to tell them and I blame the government for building a “one-size-fits-no-one NHS”. I also blame society on the whole for allowing it to happen and for allowing ASD/PDA to remain a taboo. All I want is to be allowed to access NHS care just like the rest of you. I’m tired of being made to feel like a freak and of being spoken to like I don’t have the capability to understand the spoken word. Yes, I have PDA and yes I have additional needs but as far as I’m concerned they won’t cause the NHS much more of a headache than “the guy in the wheelchair” if they handle me correctly in the first place. I’m dreading calling my GP on Tuesday. She’s probably one of the most uncompassionate people I’ve ever had the misfortune to meet. She doesn’t “get me”. She hasn’t even really tried. I’m dreading her referring me for some underfunded and pointless psychiatric assessment. All I need is for them to get it right in the first place and then I would probably be okay. Oh yeah, that bitch of a registrar has really messed up my back! I can barely walk and I can’t stand up straight! 😡 Thank fuck I didn’t let her loose on my spine with a sodding needle!!! I now need to make another appointment to see my chiropractor – more money that we don’t have! 😥

I didn’t want this to be such a negative post and I didn’t mean for it to read like I’m a self-pitying cow who wallows in my own fiefdom of misery but that’s just how it reads to me. 😦 I shan’t delete it or change it – I will still post it because it’s how I’m feeling right now. I’m hurt, I’m angry, I’m in pain, I’m scared, I’m lost and I don’t have any control over much of my life anymore. 😦
I’m going to try and focus on what I have that’s good. Focus on all the love that surrounds me. It is at difficult times like these that I am made more aware than ever before just how blessed I am to have Paul by my side. I couldn’t do it without him and I love him more than words can say. He is my reason for being. ❤ ❤ ❤

* By he I am referring to the voice that I hear during a psychotic episode. It’s a male voice. When I was a child we named him Jack.

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