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……..
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……. 😦
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. 😦
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. 😥
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.
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.
Hi julia. Im very sorry youve had such a tough time with the nhs lately and I like you am sick of the one-size-fits-none ethos they seem to have. I was wondering as you mentooned your recent health ordeals and that you would be visiting a chiropractor. Have you ever seen a traditional Chinese medicine acupuncturist. Their view is to treat you holistically hopefully easy your pain, the psychotic episodes decreasing cortisol levels which can reduce stress and ease responses to triggers as well as help with sensory deficots and attention/memory. I myself have aspergers and have a 14 year old with pda and acupuncture has helped us. Of course not available on the nhs unless you go to their nhs trained acupuncturists (which I wouldnt recommend to my dog. Usually they do a weekend course in acupuncture) I use a tcm practitioner with athree year degree at uuniversity in acupuncture minimum. Worth a try anyway. Hope things improve. X
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Thank you for the suggestion Nicola. It’s certainly worth considering, thank you. X
I hope that you are having a better day today hun and that your mind and body are receiving some rest and recuperation. Hopefully getting everything of your chest, out of your mind and into words will help you feel better. I always find that honest, blunt and truthful writing does me the world of good. It is also so important that others hear your stories, your perspectives and how, as an adult, the ignorance of the NT world continues to affect you. I am trying to help Mollie understand the NT world so that she can successfully navigate it but when oh when will the NT world take the time to understand the ASD/PDA world. We are such a minority it is so hard to get anyone to listen. That’s why the more people that write, share and get information out there the better. You have written, yet again, another fabulous post that helps us see life through your eyes with even more clarity. Keep up the good work, hopefully together we can make a difference.
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Jane I feel so much better now I’ve purged my soul, as it were. I’m a little worried that some might find this post a little too honest. I hope I don’t upset anyone. It was surprisingly easy to write but was very painful too. Lots of feelings that I would rather not have relived so soon after feeling them came up but I think it’s done me good. I’m glad that it’s helping you Jane. 🙂 All I want is to help, to educate and to breakdown some of barriers that the NT world have put in our way. :p I love the fact the Mollie is a child making an effort to learn how to exist in the NT world and yet the adult muppets out there can’t be bothered to do the same for her in return. 😦 This is so sad. History cannot be allowed to repeat itself. 😦 All this crap I continue to go through will be 100% worth it if I can stop it from happening to Mollie and the others. 🙂
Julia, it’s not the purpose of your blog to make people happy, leaving them with warm fuzzies. It’s to impart awareness and understanding. Your honesty is just what is needed. Your honesty is BeAuTiFuL!!!
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Aw thanks Klara. 🙂 That means a lot. I guess I’m just worried that if I upset people then I might end up alienating them and that’s the last thing I want to do.
Julia, this is not a whinge or a moan, or self pity. This is a crap 120 hours of rubbish NHS and a real insight into how bad it can be for a person with PDA.
This is one of the reasons I don’t want to message you when I struggle, you have enough going on, more than enough. I think stress does make mental health issues worse, and the staff at the appointments seem to have not only screwed up the appointments themselves but also left you feeling vulnerable and in pain.
I really hope you can get this sorted and they get to the bottom of your pain xx
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Ah you see hun, contrary to popular belief you can have PDA and bucket loads of empathy. I am never too stressed or busy for friends. You are a friend. You have helped me so I want to return the favour. I am one of those people who needs to be kept busy. I cannot cope if I wallow for too long a period, otherwise it swallows me whole. I am here for you and I can cope with what ever help and support my friends need. Please do not worry about me. I bounce back and I’m capable of carrying great loads before I struggle. Also what is the point of me going through all this if it isn’t to help others? I couldn’t cope if I thought my life was this way for nothing. Helping is what keeps me going. X
I know, but I still find that it is possible to be overloaded.
You do help others even when they don’t message you. Writing your blog, answering blog posts and group posts, are a help to loads of people.
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You are an incredibly strong woman, Julia. Intelligent and caring too. Wonderful leadership skills.
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Aw Klara, you’re going to make me blush if you carry on! 🙂 Thank you so much. ❤ I don't think of myself as a leader but one of the PDA army. We all need to stand together. 🙂