There’s someone I want you to meet…

If you’ve followed this blog for a while, you’ll know that my dog (an almost 13 year old Chocolate Labrador) has been my furry rock through all the awfulness – health wise and in my personal life –  I’ve faced (most of which hasn’t been mentioned on this blog). You may also know that I have for a long while hoped to someday get a service dog, not only for my physical health problems and PTSD, but because of the support and responsibility it would provide that might give me a reason to hold on. My life is falling apart at the minute. I’ve bounced in an out of hospital, had more heart surgery last month after spending 3 weeks in a heart centre (and going into arrhythmia, passing out, sustaining a severe concussion, and ending up with a GCS of 6 for several hours and lasting memory loss, co-ordination and cognitive issues). I’ve maybe got an infection in my pacemaker, or my heart is just being an idiot. I’ve torn a couple of tendons in my pacemaker shoulder – we don’t know if it was the surgery, or a pacemaker infection that spread, or what. My cardiology team are M.I.A and I don’t want to chase them any more.

My days are a swirl of suicidal ideation and… PUPPY CUDDLES. Click the link to meet Teddy.

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I need somebody…

My feelings came home, and they brought with them all the big bad wolves I’d begun to optimistically think might no longer be scratching at the doors to my mind. Due to the deterioration in the state of my heart, I have spent a significant portion of today… unconscious. I have spent the rest of the day with my head buried into a balled up blanket and music playing very very loudly… because I can’t stand to see or hear myself crying, and today I have SOBBED – raw and ugly and uncontrollably until it was too much for my heart and I’d pass out right were I sat.

When people don’t know what to say, they just don’t (my mother included). When people don’t know what to do, they don’t do anything. When people aren’t sure how to be there, they run. It’s like a reflex, a natural protective mechanism that often occurs without complex thought. I don’t blame people at all but my goodness do I miss them. They don’t have to change the way they act with me because of a rebellious organ, they are the normal I am so desperate to maintain and normal conversation and interaction makes things so much more manageable. Things are tough at the minute, without the network of people I’d found a home in suddenly retreating like rats fleeing a sinking ship. I totally get the instinctive recoil. It’s natural to run from a lit fuse. But it was the loneliness that broke me today, the lack of any sense of normality because I didn’t have anyone just to chat to, and my own mother didn’t have time to listen because of work. That isolation was the first feeling to sneak behind the wall of my apathy, and once the dam was breached, the emotional pain was so intense it was almost physical. My body can do whatever it likes, as long as there’s a life left to lose if it fails. Lose the people that matter, lose your social life and your support network and that sense of self and of your own humanity… And you spend your day crying, and collapsing, and crying, and collapsing. Today I felt like I was ceasing to exist again. It cannot slip through my fingers again.

Heads up – the next bit contains triggering themes, and talk of suicidal ideation.

Things are going to change. Due to my physical incapability I am going to have to spend a lot more time in this flat, and attend less at university (only on the other side of the River Thames, but the walk to the bus stop is too much and I cannot afford a cab). All I wanted was to put on my shoes and go to that bus stop and walk into a lecture theatre and just pretend to be an everyone else. I wanted to laugh, I wanted to talk about stupid trivial things that won’t matter tomorrow, and poke fun at my friend who says he looks like a child now that he’s shaved his beard off. Then instead of that I picked up a blade, and I held it over an artery and watched it bounce to the beat of my heart as tears rolled down my cheeks. I liked the ultimate control I had then, at a time when my life no longer feels like mine. I liked that a poorly timed sneeze would have been the end. I liked that it was that simple. It made me feel like this hell is something I have a choice about whether or not to endure (there is no choice but to go through it all, but I needed that illusion). And then I cried harder because I didn’t want to die at all, I just wanted a way out of the prison my body has become again and I realised that at that particular moment, severing a major artery was pretty much the only way. I cried so hard the blade fell from my hand. I cried so hard I couldn’t breathe in. I cried so hard that the palpitations got so strong I almost felt like I was being punched from under my own sternum. And then I passed out again, and that was ok.

When I woke up, the only two people from my course who know bare bone details about my health decided to video call me. When I answered that call, I was suicidal and crying. Within minutes, I was smiling, and I felt alive again, I felt like me, I didn’t feel like a freak to be feared. I didn’t feel like a heart problem. I didn’t feel like all was lost. We only chatted for a few minutes between lectures. When they went, I lost consciousness again. When I woke up, the tears did too.

I’ve more than served my time, but my heart has imposed another sentence. I knew that would eventually hit home. I knew all these feelings were there but I refused to acknowledge them. When I started crying, it took me ten minutes to stop stopping myself and just let it happen. And now, almost six hours later, I don’t know how to stop.

I feel so stupid, so ungrateful, so PATHETIC. But given the situation, and the reactions I’ve seen of the staff involved in my care, I feel like a few tears would have been justified. I just feel so alone. I want to go home, I just don’t know what that is. There is nowhere I feel safe – I don’t feel safe in my own body, how could I find a place to feel safe outside of it?

I’ve gone from this (a few weeks ago) to this (yesterday’s post), to emotionally (and physically) being riiiiight back where I was months ago. Only I’ve been dissociated and apathetic for so long that emotion is a very foreign and hugely overwhelming thing right now.

I’ve never wanted a small dog before (I always told myself nothing smaller than a Spaniel), but I really want to get a teeny tiny puppy, just to end the loneliness, just to be around something that sees me beyond this situation. Just to feel like something isn’t afraid to be around me. I’m going to be spending a lot more time at home. I don’t want to do that alone. I need something to need me to be alive, I just need somebody, even if they have 4 paws. If I don’t find somebody, I’m scared about what I might do, because I can’t cope right now. Physical health issues don’t just damage organs, they take down entire minds.

No idea where I ‘m hiding, but there’s no way but through.

Trying to Catch a Break

I’ve been missing from this blog for months, I know. My heart (Skippy) seriously deteriorated, and he took me down with him. 4 months ago, I couldn’t lift my head off of the pillow. Skippy simply wouldn’t let me. I spent 2 days in February drifting in and out of consciousness alone in my room before finally managing to stay “with it” for long enough to reach my phone. I ended up in hospital, and I don’t remember the days that followed, mostly because I couldn’t stay awake, and when I could, I was very dizzy and spaced out. I wasn’t really with it enough to be scared. Retrospectively the whole thing is terrifying (it was also a very bad time to have PTSD due to events in hospital so horrific several people could lose their jobs if I spoke out about them).

Nobody knew what to do to help. There were ambulance rides between hospitals, and there was, it felt, a loss of hope. We took drastic measures, and we didn’t take them lightly. Because of delays through the NHS, we were forced to use the facilities of a private hospital. My family and I couldn’t afford that, but an incredible person I met through this blog started a fundraiser that covered 1/3 of the surgery costs. On 29th of March, I was put to sleep. I woke with a new pacemaker (Pablo). My heart now won’t beat for itself again. We’ve destroyed almost everything that could tell it to, and each chamber is now paced individually. I still struggle with this – I don’t feel I was worth the effort, let alone the cost. I have to pay my parents back, and the savings I had spent so long gathering to be able to fund a service dog are now nowhere near enough.

Three months after that surgery, I can walk again (not far, and my legs and heart protest with each step, but it’s still incredible). I am currently in Sheffield staying with a friend who remembers watching me have a cardiac arrest the second time we met. Prior to that, I finally met the incredible blogger who helped to fundraise my surgery, and she was so much lovelier than I could even have hoped for. Three weeks after the surgery, I got to see Bastille in concert. I sat with their friends and family, and got to meet the guys themselves.

On Thursday (12th July) I confirmed my place to study a masters in cardiovascular science at prestigious university in London. Research that has taken place over the past few years has given me the life I have now, offered solutions where there were none, and developed the techniques that played a part in that. But there’s still so much more to do in terms of research. I want to help make sure that other people’s futures differ from my past. If I can spare just one person from just one element, that’s enough.

I will be graduating on the 26th of July with a 2:1 (the lecturers who have contacted me, and medical professionals, and even my family, are impressed with that, but to me it is a bittersweet moment – I look at that grade and see a reflection of my health, not my brain). I had a mini stroke in May halfway through exams (as if there wasn’t enough stress already). But my health never has been, and never will be, and excuse to me. It isn’t me. It isn’t who I am. It will never define my capability. I’ve written thank you letters to the people who have played a part in getting me to where I am now – from police officers who found me on a train station floor 3 years ago, to lecturers, to cardiologists, to friends, and to paramedics who have carried me down flights of stairs but stayed in touch. My degree felt, and feels, as much theirs as mine. Some of them cried when I told them my news because they were so pleased. Most were stunned. We all celebrated.

I even celebrated as I was taken down to theatre. On the 12th of July I not only accepted my masters place, but that night I ended up in hospital. I had emergency surgery on Friday 13th, and there’s now an open hole in my abdominal wall that will take a couple of months to heal. My immune system bailed on me and let an abscess develop at my infusion site, and some surgeons had to step in because antibiotics aren’t very effective when your immune system is bailing. So I’m 140 miles from home, in a lot of pain, and being in hospital was very, very traumatic (was given none of my regular medications, including heart meds and pain meds, for the entire admission. Was given no antibiotics until the morning of the day I was discharged, they seemed to forget I have type 1 diabetes, had no idea how to use a portacath so pressured me into letting them stab me unsuccessfully…). But I am out of hospital. I am alive. I can walk. I feel beyond lucky.

While I was high on morphine post-surgery, and between the flashbacks and nightmares that left me sobbing and shaking, I decided I wanted a hamster. I found an 8 week old hamster that the lady hadn’t touched for 2 weeks and didn’t want. He didn’t have enough bedding and the cage floor was almost bare. Whilst high, I named him Dash Stille, and yesterday my friend took me to collect him/her.

I can’t afford a service dog, which would genuinely change my life so much. But now I also can’t afford a place to live, and my overdraft is currently paying for my food. My parents refuse to subsidise me until I at the very least have a job, but even lecturers at university appreciate that my health is nowhere near good enough to sustain any form of employment right now, and discouraged me from even thinking about employment (my lecturers also call me “Superhuman” and one has bought me a cape for when I graduate). I want to be financially independent. I really want more than anything else to have a job. I want my own flat, and to get a puppy and train him up as a medical and mental health service dog so that I can be more independent and my health will be more stable. I have to somehow pay my tuition fees but am hoping I can get a loan for that. I refuse to live off of the state, and I have no credit history so can’t take out a loan. There’s currently an open hole in my side that HURTS more than the nerve pain I have left over from so many heart surgeries, yet my financial situation is stressing me out more. Money shouldn’t make the world go round, but it does. I have been too unwell to attend a single lecture in my final year of university, I know that attending labs and lectures for my masters will wipe me out and a job on top of that will break me.

But I’ve got a little hamster guy (so I have a focus and a distraction and something dependent on me which means I have to stay on the planet no matter how awful the PTSD gets) and I am out of hospital and alive. No idea how to keep doing this. Left a lot of awfulness out of this post. Sure a lot more will follow it.

No way but through. Somehow.

The Places I’ve Been (Part 2) a.k.a “More Word Turd”

In yesterday’s post, I confessed that I had no more to offer than some highly emotional word turd taken from the notes section of my phone. I am afraid today is no different, and the next few posts won’t be either. Unfortunately I have been struggling a lot with my physical health as well as my mood, and so, so much was left unsaid. Unless I capture the raw thought, there is no point in even attempting to find words because out of the moment I cannot find the right ones. For example, among all this, my next door neighbour was a constant. She was like an extra mother, a life coach, and we have been walking the dogs together whenever we can and if not, just hanging out. Among all this, personal stuff happened. In fact, a lot of extra stuff happened. I got a lot worse than these words show – so bad that I saw no point in anything, least of all trying to capture the thoughts so I could make sense of them for myself later.

So here it is. Another word turd. I was terrified to post yesterday, for reasons I sort of possibly explained, but the comments I got in reaction to that post weren’t what I expected at all, and I sincerely thank the people who left them, because they gave me the oomph I needed to post this today.

12/01

“On urgent list for surgery, sending his secretary over to scheduling to see when they can fit me in.”

It snowed for the first time in a long time, and settled here in Kent, but not really in London. Everything looked beautiful. My mum left me to sleep through dinner.

“Mum so helpful and friendly when I’m normal person ill. She can relate to that, sympathise with it.”

“Almost refreshing to be unwell with something that doesn’t have the power to kill me. But me getting normal people unwell is usually disastrous, because it makes all my health hiccups hiccup, putting me into the sort of state that does have the power to kill me. Every time I get an infection I end up in hospital, usually ICU, because I almost died again.”

“Mum insists on doing everything for me. She went out and bought a whole bag of extravagant foods and stuff that I used to really like, in order to tempt me to eat something. Won’t let me get anything for myself, left me to sleep through dinner. Told me to sleep, got me loads of stuff, waiting on me hand and foot… and this (“illness”) is genuinely nothing at all.” I felt grim but I wasn’t dying.

“That moment when you’re meant to do three separate graphs for your coursework and you’ve done it all on one graph with three labelled lines, and its the first bit of work you’ve done while having a breakdown and now you know you can’t even follow an instruction right (this was followed by a series of upside down smiley faces and then a crying face, because I had given in the coursework days early)

I am a failure

I’m doing uni but not well

[My next door neighbour] has been praising me all week saying she’s so impressed (she took me to and from the train station a lot and walked the dogs with me most days)

Today Mum said I did well as she didn’t think I would do it and get through the week and my heart isn’t there and stuff so apparently just submitting anything is enough.” Only it isn’t.

13/01

“So I got this message saying I had an appointment at [specialist hospital in London that deals with hearts including mine]. Thought oh good I’ll get to discuss the surgery with [Dr (let’s go with cardiologist because I’ve forgotten what I refer to him as usually)]. Then get a letter saying the 20th is my pre-operative assessment. Then below it had an admission date for surgery in the brand new building that looks like a hotel. At 7am… On the 31st of January. Couldn’t have been better timed; have a lab due the Friday before and then nothing assessed until the Friday after. Caught me off-guard though. I knew they were rushing everything forward but this letter was sent days before they could arrange any of that. Haven’t even seen him. Don’t even know what they are doing or why or if I will have a general anaesthetic or anything. I fear the unknown because I can’t prepare for it, so I got stressed I …”

“Haven’t done anything today. Woke up at 7. Came downstairs and started typing some lecture notes, fell asleep.” Basically my throat was agony and tasted of blood, and what started as a tickle had turned into a pain that spread right down into my chest. The pain made my heart go NUTS. “Heart very fast, chest pain from heart but this morning couldn’t breathe because it felt like something sat on my chest. Hurt too much to cough. Slept all morning dosed up on opiates. Watched Elementary while [my dog] laid on top of me and snuggled under my chin (he’s a 31kg labrador) which made breathing even harder. I can’t eat, I’m knackered, and all I’ve done is sleep and I ache everywhere… and that’s refreshing because that can’t kill me. It feels nowhere near as awful as my usual version of unwell. But it triggers events that will put me there. So I’m just letting my body do what it wants to: shut down and sleep and sleep and ache and sleep. Freezing one minute and melting the next. Dizzy if I even attempt to sit up. Heart way too fast. It’s annoyed. Deep joy.”

14/01

“You look the same”

“I’m not” – Taboo, BBC

“I’m terrified I might die on an operating table and yet my desperation hopes that will happen. A natural response to my fear of dying seems to be to long for death.

Now have a chest infection. It hurts.”

I think this was the day that along with the usual pink froth (caused by my heart letting fluid back up in my lungs) I started coughing fresh blood.

15/01

I compiled a list of evidence as it occurred to prove that someone in this household has an aggression/anger problem that I refuse to delude myself into thinking doesn’t exist like everyone else does. Happiness is not pretending you’re happy. Ok isn’t just pretending everything is ok. There’s a clear issue we’ve addressed so many times and suddenly we’re all acting like no, things are perfect. Pfffft.

The roads we walk have demons beneath and yours have been waiting a very long time” – Benedict Cumberbatch, Sherlock, BBC

This isn’t torture this is vivisection” – Sherlock, BBC  (There was also a part in this episode – the final one of this series – where they used the word soldiers in some awesome way that it would take me forever to quote).

16/01

“Today I really can’t breathe. Was feeling better yesterday but I woke up today feeling rough. Went to uni, mum drove me there, gave in my coursework. Went to lecture. Seeing people was really not good for me I just couldn’t cope with it. Lecturer didn’t show up so went home. Slept from 2pm until dinner. [My dog] curled up on me. Coughing a lot more today. No energy to do anything. Dizzy. Worried they might cancel my surgery.

Mum and I stopped on way to uni, she bought me McDonalds. We laughed as she ate FIRE (or as the menu called it, a piri piri chicken wrap). It was nice.”

17/01

“Was kept up all night by shooting electric shock pains all over my body, mostly left side, legs, left shoulder. Kept having witches and spasms. Happens sometimes, but my body really went for it last night.”

“Got my copy of Carve The Mark by Veronica Roth

“Things I suddenly cannot deal with

  • Self pity
  • Humans
  • Uni”

“I do not have the energy or the substance to throw myself onto the flames of someone else’s self pit. I am irritated that they have once again found their way to my doorstep, because their owner has no intention of fighting fire with fire – they hare happy to walk up to the raging inferno/ burning building of myself and ask me to use what limited stuff is left in my fire extinguisher to put out their tiny little puff of cigarette smoke. And then they drive themselves home in a fully functioning fire engine and leave me. That’s how I feel. Like everyone drives up to me in free engines, smiles in my face as I burn, asks me to put out their own teeny tiny trivial first world problem fires, and then drive off in their fire engines to answer the calls of tinier fires in the homes of people they’ve never even met.”

At this stage my friends were freaking out over the absence of a lecturer they all moan about constantly and trying to arrange a leaving party for him or bake him a cake and hoping he was alright and asking if it was weird to offer him any support they could offer. These are my friends. Who didn’t notice I’d moved out of London and also hadn’t been in lectures for an entire week. This told me a lot about myself, when it meant nothing at all. The irony was brilliant. A couple of my friends were annoyed about it on my behalf, which then made me pull this meaning from it all. I wish it had never been planted in my mind. I wish they’d left it alone.

“Nobody noticed my absence. Nobody would miss me if I left. Right now. And I don’t know where it came from because I thought it was leaving. I had my dog and I did revision notes. No work, but revision notes. I always think I’m not clever enough to be at uni. I don’t feel it. I feel like all the work is a mountain and I’m so far behind and so scared that the uni’s solution will be for me to drop out until my health improves (so forever then, because it won’t) that I won’t tell them. Little things, like people being dramatic about trivial little issues are too much, and I don’t want to go back. I was crushed by this emotion and I spent the last hour trying not to cry. Everything I try to do spirals into this big mess of thought and failure. My parents are really pushing me to go to uni tomorrow and I’m nowhere near well enough to do the commute.” Then I wrote about some uni crap,

“I’m angry.

I’m angry at the world all of a sudden.”

“I’m so disorganised I don’t know anything people ask me if I have a lab and I used to know these things and now my friends are just telling me when I have then except now only one person because nobody cares I can’t do it oh no help I’m going to fail.”

19/01

“Already knew my heart surgery is on the 31st. Got a phone call from surgeon’s secretary about removing growth and underlying cartilage. Says 8th of February. I have a PBL (problem based learning tutorial) session at the medical school then so had to cancel that date. I said that was too close to my other surgery because I didn’t want a lecture about putting my health before uni. She was all the 8th of March? The day before my 21st birthday. I was going to relent and go for it, and I said yes, but then my mum was all it’s the day before your birthday you don’t want to ruin that (been there, done that, got the t-shirt and the opiates and the birthday spent in a world of pain). I asked if there were any other times he would do it and she said no I couldn’t wait any longer than that so we went round and round in circles until she was all after that the earliest it could be done wouldn’t be until as far as the 22nd. That would be two months between first showing anyone the growth, and having the thing removed. The NHS waiting list after they decide you need the surgery (not from the initial consultation) is meant to be 18 weeks. Erm. What. Cedric, what are you?” (yes, I named the tumour Cedric. It helps me tell myself he’s harmless because Cedric sounds like a harmless sort of name – please do not now send me a list of serial killers called Cedric to prove how illogical/ incorrect I am).

I just got completely overwhelmed because I worried about leaving Cedric so long and I was still thinking about the other surgery

“Me: I don’t care I don’t want to do anything any more,

Mum: You think I do either?! *walks out of room in frustration*

I am a dick.”

“I am so done. With all of it.

I’ve thrown myself into uni work but there’s no passion in it. I tried to write a blog post and almost cried in the end because my words are so wrong and people think they understand but they don’t. Even people who’ve been through every single event of my life wouldn’t understand, because they would understand and experience it from a different viewpoint.

What I want/need to do is quit uni. But all my parents care about is me going to uni, never mind how bad it is for any form of my health. I want to focus on my writing.

I want to move to Canada

Looking at my dog and working today with him sleeping in my lap and across my legs as I typed notes, I wondered how I ever managed to be apart from him.

Only one person has messaged me since Monday. Good to know where I stand.”

“I don’t want this surgery any more. Any of it. He [cardiologist] has made such a mess about it and put so much extra stress around it with the not knowing ANYTHING ABOUT WHAT OR WHY THEY ARE DOING TO MY BODY… I like to have a plan and know what’s going to happen and what they want to do and why and if there are other options. I like to feel in control and like it is a choice and he took that away. All of it. He doesn’t even know and he didn’t even mean to but he has.”

“Nobody has even asked me if I want to go ahead with the heart surgery. I haven’t given consent. I feel like I don’t a have a choice. It’s majorly triggering my PTSD (which was triggered by horrific experiences in paediatric wards when I was younger).”

“He had to make a five minute phone call. Just when you think you actually matter to one of them, they remind you that you’re just a hospital number in their appointment list. No thought about how the person might feel or what a big deal it is to them; I know he’s thinking about my life but is he thinking about it for me or him? Sometimes I wonder. I let my guard down. I guess I’m more annoyed at myself actually.” Basically he was the one doctor who seemed to care about me as a human. He always remembered and discussed uni and everything, and he seemed like he might be a good guy. And he was just like the others as soon as he did that, because my PTSD made me relive things and the fresh fear convinced me he was just like them, that I was going to feel every snip of a surgery or be screamed at or assaulted or… Stuff.

“Why do doctors even have so much power? They’re human, they’re flawed, and yet even when they are students they think they are above everyone. Self importance ruins people.”

“I seem to be unable to do anything other than uni. Which would be great… Except I have mostly done last semester’s work, rewriting notes from lectures I actually attended last semester (so… Hardly any) or even staying up to date or attending this semester’s lectures. I’ve started revising, but right after I’ve written up the notes. It started because I was so in love with immunology that I didn’t want to work on anything else.

And y’know… I’m only focussing on the modules I like. Which means they are the modules I could do in my sleep because they interest me so I remember: Immunology (I’ve only been to two lectures), molecular bio (only four lectures of that) and physiology because that’s cardiac and respiratory and THAT IS MY JAM. I am a cardiac nerd.”

 

Aaaand flush.