I Need You Guys To Understand What They Can’t

“Welcome to the inner workings of my mind 

So dark and foul I can’t disguise

Can’t disguise.

Nights like this

I become afraid of the darkness in my heart

Hurricane.” – MS MR, Hurricane

Last night I woke so many times from nightmares about hospitals. I woke crying and shaking and soe times fighting. I fell into my dog’s bed and curled myself around him and just clung to him as he sighed and rested his head on me, patiently waiting until the shaking stopped before nuzzling into my neck and comforting me back to sleep with him until the next one came and tore me from my sleep again. I felt so defective. I hated myself for being so pathetic. PTSD made no sense to me last night and it made me so angry at myself. I couldn’t control it. There I was, pathetic, curled up in a dog’s bed clutching a chocolate Labrador. He was non-judgemental and gentle and calm and he knew that I just needed him to be there. He nudged me when I was having a nightmare until I woke up and almost hit him by accident in a wild terror. He then licked me and laid himself on top of me, sighing gently and pressing his body against my shaking useless self.
I left out some details about yesterday’s appointment, like how they didn’t want me to use Bob Jr. but knew I had the medical knowledge to have worked out my own treatment regime properly (and also that I would do what I wanted whether they told me to or not) and so decided that instead of argue they would keep me on side. 

We talked about future treatment options, but all of them relied upon me working much more closely with my consultants and informing them as soon as things start to go wrong (due to the nature of the increased likelihood of deteriorations and the greater risk that comes with a method that may provide potential stability to one health hiccup that likes to drag the others with it). They knew that because of my PTSD and the things that have happened to me before in hospitals (they know more than you guys, I told the psychologist for people with physical health hiccups and she also helped me through a lot of the emotions that happen with doctors screwing up and nearly killing you multiple times, which gave me PTSD on top of PTSD – or in reality just a whole new library of flashbacks and nightmares. She also accompanied me to hospital once and witnessed my freak out). 

This is why my consultant didn’t want to plough ahead with stuff. He wants to attempt easier stuff first that he is aware might not work (if ever there was a time for hopeful long shots it is now) and try and give us some time, as he is aware that pushing a solution to this health hiccup will probably break me mentally and cause a breakdown at the very least, even though it would prevent me dying. Now that I understand his reasons for not treating me when I was in Norfolk, although I don’t really believe them, I was glad that he appreciated the severity of the emotional impact of everything I have been through. 

My old London consultant for this hiccup (who I much prefer as she changed my life, and who in a specialist hospital elsewhere in London) watched me freak out first hand. I was admitted as an emergency and hooked up to IVs, and when she came to see me on the ward I was sobbing so hard I couldn’t talk or breathe, I was shaking, I was dry heaving from the stress making me physically sick. I was having flashbacks and completely losing it. I was terrified. I was in such a state that she looked very alarmed. She sat on the bed but she had no idea what to do. All I could do was rock and sob and eventually I managed to say “let me out get me out let me out I think I’d rather just die” over and over between sobs. She sat there looking like she was going to cry with me, with the specialist nurse stood watching in an equal state of alarm. My bloods were still way out of normal range, I was still in an emergency but finally heading in the right direction. She let me home with a pH of 7.2 (normal is 7.4. An emergency is 7.35 or below). She said that in that instance she had to make a call to protect my mental health from the impact my physical health and being in hospital was having on it. She’d wanted to keep me in for at least 3-4 days for a load of testing and new treatment trials but she didn’t even keep me in for a night. She tried to persuade me. She offered me my own room, she said she’d put me on the teenage ward instead of the ward I’d been put on, she bargained with me and reasoned with me and I just didn’t know how to stay, I couldn’t. I was wild with panic and it had taken over and I couldn’t control it. Nobody has ever seen me freak out like she did then. She hadn’t even imagined what being in hospital did to me emotionally and then in front of her I lost all control of my mind. I was alone. Even her telling me she would let me out didn’t calm me. Because I was there, and it smelled like a hospital and my brain linked that smell to flashbacks of things that had happened before. 

For months after that I was ill enough to need to be in hospital. I danced on the edge of a medical emergency but she knew what being in hospital did to me and that stress was the last thing my slowly failing (from exhaustion) body needed. We kept in touch very regularly by email (every couple of days) and regular phonecalls, and I would go to clinic every couple of weeks and she would try to persuade me to be admitted. But she knew not to push it. She knew the PTSD needed to be calmed first. Then I left and appointment with her because I was so worried about uni, and an hour later nearly died in my first anatomy practical (and in doing so gained my uni parents). The staff in that hospital (that nearly killed me and now manage that hiccup) didn’t understand. I freaked out like I had with her, but I did so alone. I ran away and my uni parents slowly talked me back. I cried until I was sick. I got into that same state of panic and I emailed her and I called her and then… The huge hospital that didn’t understand took over my care. And because of the physical health hiccups I had, I saw a psychologist who helps people deal with the emotion that such serious stuff threw up. However, instead of focussing on the PTSD we focussed on uni trying to kick me out because that messed me up and I stared to develop alcoholic tendencies (I’m not even joking, I almost got referred to a service, it isn’t how much you drink it’s why. My flat mates laughed it off but they didn’t see all the empty bottles in my room or that I had to have a bottle of cider just to numb the hurt before I could get out of bed… I was so ashamed but there was nobody there. I could only face the day drunk, until my uni prents stepped back in). These guys didn’t place any importance on my PTSD until finally in an appointment I cracked and mildly freaked out and cried at them. I recognised that same look of alarm on my consultant’s face. And next time I saw him, he was different. He realised we needed to address the PTSD because it was stopping me seeking help when I really needed it and it was making me so scared of going to appointments that I was sick and shaking beforehand.

So they’ve finally found a psychiatrist who specialises in this specific area AND physical health hiccups… But he’s at the hospital I went to that screwed up testing and put me into a (medically induced… Ish) coma as a result, where the doctor called my illness a story and then almost killed me with her ignorance, where I had to have emergency surgery after I woke up in the PICU and it took so long I ended up able to feel every snip for a very short period before more injection was given… I can’t even say the name. I can’t even see a photo of any part of it or go through the train station by the hospital or be in that part of London. I can’t. I more than break down. Sometimes the terror is so strong and instant that I just vomit in response to it (this also happens if I walk into the local hospital where some horrific things happened, which is why I stopped going to my appointments with my paediatrician – he’s still the only person who knows I didn’t show up, I was having nightmares of his face I couldn’t face him). And then I’m too distressed even to cry, I don’t shake, it’s more violent than that. I can’t move or talk or anything I just freeze and it all flies through my mind and I can hear it and smell it and almost feel it. And they want me to go back there. That is why this consultant wanted to tell me in person himself with my health hiccup psychologist present. But he was in a meeting yesterday.

I heard and even said the name of that hospital so many times in that appointment (after my mum left us, but that is a whole different story, her presence made me tense and stressed and intimidated a freak out in itself) and it was so traumatic and draining and triggering that by the time I left the room I felt like I’d been beaten up from the inside out and I just wanted to crumble but my mum was all in my face. 

“You don’t ever have to deal with those doctors again, this will be seperate, he wanted me to clarify that.” Health hiccup psychiatrist kept saying to me, but if just the name is so triggering I am dreading what being in the building again will do, does she not get that? I knew I had to do it though. I know I need the help and it was awful. I felt so trapped and I was so full of dread but I want to be eligible for other treatment options so I have to. I have to.

They know I’m going to be too much of a mess to get off of the train to go to that appointment. They know I will probably stay on and they know I will melt down at the sight of that place’s name, let alone that actual building. My health hiccup psychologist came to A&E with me once to try and persuade me to be admitted, but I ended up pacing around the cubicle. I wouldn’t get on the trolley. I wouldn’t put on the gown. I was wired, buzzing, trembling, terrified. I was also seriously ill. My friend stood there like a trooper. The psychologist talked at me patronisingly asking me what would happen if I left but I didn’t care, I was reacting to fear and fear overrides all logic. She lost control and even she looked stumped and quite alarmed at just how terrified I get when the flashbacks start… With one sentence a uni parent calmed me, because they both very quickly figured out how I work. I left anyway. Health hiccup psychologist managed to make me stay long enough for more medication and stuff but I insisted on waiting on a chair in a corridor and not in a bed in majors where they wanted me. My consultant was phoned and wanted me to stay too. When he realised how distressed I was he said I could leave by insisted that if I did so, I had to be phoned hourly to update them on my condition and make sure I was alive and if at any point I didn’t pick up he was sending an ambulance and the police to my flat in uni halls. His registrar said she would do it. Thankfully she only called me once, and when I said I was fine she got all happy and hung up. Doctors and uni parents and anyone else who knows me will be aware that I don’t do “fine” – I’m good or I’m not. Fine means I am so far from fine. It is what I say when I can’t lie and say I’m good. But anyway, I’m taking my health hiccup psychologist to meet the new psychologist guy. I am that bad. And she knows just how bad I am, because when she was with me watching me lose my mind in A&E, that hospital hadn’t yet given me any reasons to fear that specific building (they soon would).

What if I get so worked up that my heart freaks out (Skippy does not enjoy stress)?

My mum talks about my PTSD like I’m pathetic and ridiculous and it is just an excuse. She’s crap about mental health issues. She tried to shout depression out of me and she tried the same with PTSD once upon a time, just adding to my shame. She seems to think it is something I can control, that it is a level of fear that is suppressable and that I’m being ridiculous. She doesn’t understand at all and so she ends up shouting every time. 

So I just need you guys to understand what my family can’t. I need anybody to understand. It isn’t fear, it isn’t normal and I know it is so pathetic but I can’t help it. I wish I could. I’m sorry I can’t. 

Could be so much worse. I am so lucky and I feel so lucky and I’m so ashamed about all of the above.

No way but through. There never has been and there never will be.

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