Just Another Loop

I’m on an emotional rollercoaster at the moment, and yesterday was the sort of day which I can only describe as another loop on the track. I woke up knowing a date for my surgery (22nd June, exactly a month since my heart wrecked the awesomeness of a night at a Bastille gig by behaving in a way it NEVER HAD before) and also knowing that despite only finding out I needed it two weeks ago, the surgery ideally has to take place within the next week. By the time I went to sleep (or not, because it’s 2am the next day and here I am trying to sort my head out) I had experienced the pure BRILLIANCE of hearing the new single from Imagine Dragons and the long awaited new Lorde album, lost most of the day to a rather involuntary sleep (Skippy rendered me dizzy and unable to breathe. I couldn’t human, but only for six more days!), and then been hit by the pure DESPAIR of being told that, thanks to the recent massive computer hack, the hospital is still 350 surgeries behind so can get me a theatre team but… no theatre! Goodbye surgery date. Hello void I thought I’d crawled out of. This, right here, is why I usually never let myself hope – because it sets me up for a fall, and the landing hurts A LOT.

Basically, it was the kind of day where you look out of the window and wonder how the world is still turning at the end of it, because in your mind molten rock is raining from the sky and everything you thought you’d managed to build is falling apart around you. 

My cardiologist is really upset that we’ve been forced to go private to get the surgery in the time frame we need it to happen, but the already overrun NHS part of the same hospital where he usually does all of my treatment has a shortest wait of about 8 weeks because of the huge backlog with even emergency surgeries. I felt awful about my family having to gather a sum of money we don’t have. It felt morally wrong and it troubled me deeply. I’d been terrified of the procedure itself, knowing what it will do and how significant the impact will be (the scientific part of my brain is ALARMED at what is taking place). And then there were all the what ifs: what if it doesn’t work? What if something goes wrong? What if it kills me? I feel personal pressure for everything to go ok just so that money isn’t wasted. 

I’d been spiralling into this sinking feeling, and when I was given a surgery date it was like someone cut all the bad stuff away. Maybe the not knowing was the hardest part. I like a plan. Don’t like being left in suspense with things as important as my future. So I was happy. It felt like flying. And then after one phone call it felt an awful lot like falling, all over again. 

I just stopped. All of me stopped. Like in a film when someone is shot, and there’s this moment where they grunt and pause and just clutch at where the bullet went in – you don’t see any blood, they don’t fall right away, they are winded and they hunch over with this kind of startled pained look on their face, and their brain is all “WHAT. WAS THAT.” I’m still stuck in that moment. For a while I was so restless, feeling so many things but unsure what any of them really were because I was too overwhelmed. I wanted to go for a walk to clear my head, but since that Bastille gig I’ve been housebound. I wanted to get away. I tried playing music, but it just became a noise layered over the top of the chaos in my head.

The situation seemed too good to be true and it was (just like the crazy idea of having one normal night at a Bastille gig where I thought I could forget about my heart, and the surgery a month before that which was new and we thought would tame my heart). But it isn’t all bad, and at some point when I stop reeling from the sucker punch and stand back up again, that’ll sink in. I’m lucky. Always lucky. There are people far worse off and so my conscience tells me I’m a complete arse for reacting in the way I have and refuses to stop focussing on everything that it is seeing on the news at the moment. But being scared is a draining process. Waiting is draining. Hoping is draining. Losing hope and finding it is… Draining. Almost dying takes a huge emotional toll, even though it’s happened so many times (but the last time was only just over a week ago and I still haven’t wrapped my thoughts around being as ok as I am). I can’t handle the not knowing. It’s my life. My chance to have a life. And every time I think we’ve found a way to tame the beast it breaks its chains. It feels like a cycle (this also happened with my last heart surgery).

I think what got to me the most was that as I laid there today, my heart hurting just to remind me it was there, dizzy, struggling to breathe, exhausted, eventually unable to stand and then unable to stay awake as things started fading to black over and over… I felt so physically unwell that I didn’t know how my body could endure that for another hour, and the thought of six days between me and any potential relief from that exhaustion and incapability and (literal) heartache seemed like such a long period of time I almost cried… Six days felt too long. Six days felt too long. 

I don’t know why I’m posting this. Probably because the comments on my last post were very helpful, my family will be having their own reactions to this situation (and we don’t talk about our feelings anyway) and only three of my friends know (and are therefore on this rollercoaster with me and a little lost for words). Hopefully when my cardiologist is back at work on Monday we’ll have some better news. Although Monday marks the start of what should be “surgery week” so that’ll be a little tough. I’m lucky and I’m grateful and I’m fortunate. I’m also reeling and hurting and lost. So excuse how pathetic I’m being right now. At this exact moment, I don’t know how to be. I can’t sleep. I can’t think but I also can’t not think. My brain is full of feeling and devoid of all emotion at the same time somehow. 

Still, no way but through. 

I’ll order pizza for breakfast. I’ll cuddle my dog. I’ll listen to Bastille. I’ll watch some Julian Solomita &/or Jenna Marbles YouTube things. And I’ll wait for my world to start turning again. 

Blindsided By My Own Heart

There was a post I wanted to write in place of the words you are about to read, and I’m not sure how to introduce what goes in its place. I’m also not sure how to word what goes in its place either. But… Here’s an attempt to do exactly that.

I was up and out by 9:10 this morning, making my way to the tube station to travel to my hospital appointment. As I walked into the hospital there was a huge Christmas tree, and that took a little sting out of the tail of where I was. It was just a trip to the device clinic – no doctors, just to see what my heart had been up to and check to see if Reginald (the little device in my chest) is all ok. Usually takes just a few minutes, they download all the stuff from Reginald, we see that he’s had a rather unremarkable time and not been activated, and then I get to leave. Usually. So that’s what I expected.

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You can’t really see the sparkles in the trees all around the fountain but hey. 

But I was blindsided by my own heart. I sat down in the chair in the clinic room and we had a look at whether or not Reginald had been freaked out enough to be activated. And then he sort of sat back in his chair and looked at me, and asked me how I’d felt on a certain day at a certain time. I looked at the screen, and the ECG trace he was looking at had been flagged a different colour. I didn’t lie, I admitted weird stuff has been going on. I’ve been telling this blog that my heart feels weird and stuff for just over a month, but honestly I’ve been a bit distracted by other things trying to kill me.

He asked me about other dates within the last couple of weeks. He asked me whether I’d been doing anything special or out of the ordinary on some other recent date, and said that my heart rate had been 179bpm for two hours. I was hearing all this, and I’d been symptomatic and stuff, but honestly it was hard to comprehend that it was my heart.

My heart has been feeling weird, I’ve been getting a lot of palpitations and stuff, but I’ve also been getting a lot of general symptoms that I put down to other stuff because that’s what happens when health hiccups hiccup together. So I didn’t deal with it. I should have. Totally should have. Because then he looked up at me and looked a little in disbelief and said,

“Well there are eleven incidences of tachycardia” Ok, that’s feeble. I am clearly the most pathetic human ever because it’s a fast but regular rhythm and I’ve been feeling dizzy and getting chest pain and ascites and oedema and clearly I’m just imagining it all… But he wasn’t done.

“And 179 incidences of arrhythmia.” 179. Well that would do it. Erm… What? How? Excuse me, are you sure that’s my heart? Go home Reginald, you’re drunk. 

He brought up my heart tracings on a screen, printed a few off that showed squiggles and peaks and fluctuations between the peaks of my ECG where there shouldn’t be any, and stupidly fast heart rates, and some tracings where the bottom half of my heart and the top half of my heart decided to beat at totally different rates. Skippy (my heart) had gone rogue. He looked a little uneasy and told me he needed to go and get one of his colleagues. When he came back he was visibly concerned and when I said I’d just decided it was nothing, he told me it was definitely not normal, and that he needed to go and get a doctor. All I could think was ok, so let my cardiologist deal with it when I can next face going to an appointment. But he said it couldn’t wait until my next appointment. So he phoned the registrar who was in clinic, and then they went and had a conversation, and this doctor walked into the room a while later and shook my hand and before he even sat down he asked me how I’d felt yesterday.

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Yesterday night

The above picture is of my yesterday. Throughout the entire thing, even as we got on the underground, I said my heart felt weird. It hurt, right round into my shoulder and arm. It just felt weird, and I was dizzy and my abdomen was more swollen than it has probably ever been. And I couldn’t work out why. I coughed a lot and felt water at the back of my throat. It was hard to breathe, no matter how deeply I breathed in, my lungs felt like they couldn’t expand fully. And I ignored it all. But it all made sense when the doctor said the next thing.

Your heart was beating in an abnormal rhythm yesterday for about six hours. Probably longer, actually. I mean… I had suspected but then totally dismissed this (assuming instead that I was being melodramatic and needed to get a grip)… What. Seriously? Skippy dude… No. And then he glanced at the data from Reginald’s freak out and said, “Oh actually, it started right in the early hours and went on until very late at night.” He looked at the cardiac technician guy or whatever his job title is, and asked about another time, the response was that I’d just been flicking in and out of arrhythmia. And it all made sense then. The fact that yesterday during the day I was SO tired and was struggling to stay awake. The fluid retention because my kidneys were annoyed at my heart being in an arrhythmia so frequently I guess. All of it.

The doctor sat down and looked at me. And I couldn’t really feel anything, the reality didn’t hit, but I looked right back at him. He looked like he was about to say something super bad, but he wasn’t. He told me about what my heart had been doing, and his colleague explained the tracings to me. When held up against my baseline they were kind of chaotic and way more weirdly shaped in ways it never had been before. New heart junk. Merry Christmas body, love from reality. 

He told me it wasn’t normal and we couldn’t just leave it. And then he started dancing around the topic of a treatment, saying that he needed to urgently email my consultant and work out a treatment plan which will also be put into writing. And he danced around the subject until eventually I gave him a shove and he stopped avoiding and started talking… about surgery – the stuff I talked about with my cardiologist a few months ago, but that we decided to hang fire on after my heart improved a bit over the summer. With the medication I take, my heart apparently shouldn’t have done any of the things we sat looking at on the tracings. I mean… It shouldn’t have done them anyway, but apparently it can suggest other stuff is going on so who knows. He didn’t. I don’t.

I was kind of stunned but not really stunned, because there was no emotional reaction or real thought other than, was that really my heart? and clearly it must have been. There’s no way I can wriggle out of this one, Skippy has betrayed me and it’s printed in black and white now so I can’t try and y’know… Mask it. I was totally calm throughout the entire hour long commotion. I sat there on my phone reading blog posts and writing stuff and I talked to them about stuff that didn’t matter. I was completely unable to react to the situation. At all. But I kind of thought it might be important to think or feel about it, so I tried to.

And then I did the only thing there was to do – I stepped out into the world, I bought myself a footlong sub in Subway and a load of food in Pret (and my bank account probably cried about this as I got back on the tube) and headed to campus to attempt to complete the coursework I had that was due in by 5:30. Normal life carried on. I went to my lab at 2pm. I sat surrounded by people, one of whom was very happy which made me just shut down. I sat looking at information, and got complimented by one of the assessors on today’s Christmas jumper.

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I haven’t been able to wear this since I almost died while wearing it last December, but it was the only Christmas jumper I was wiling to let smell of hospitals. Yes I have a padlock on my belt loop – I finally acquired one in the lab because we need them for lockers.

But my brain was still in that clinic room. It was still there, refusing to leave until it figured out how to react, figured out how to even have a thought. And everything else was completely overwhelming. I wanted to cry, but not from sadness, not from weakness, I don’t even know why – just suddenly I realised that I was holding in tears. From nowhere. Another thing that just appeared with no warning. And I had to act normal, I had to be this version of myself that healthy people can handle. They moaned about trivial things and I sat there trying to even comprehend what even had gone on.

Two new things requiring surgery in as many weeks, both pretty big deals… And I knew the university didn’t care. The one thought that managed to temporarily surface was the realisation that university CANNOT find out about either thing, because if they know I have to have surgeries, I’ll have to drop out (or at least last year when they heard I had a surgery planned it was a bullet in the gun they kept firing at me in order to kill my attempt at uni that year and make me take a year out). I spoke to my mum right after my appointment, and we were both calm and I managed not to be a dick. She said it was scary, because I told her everything I’d been told (the stuff I’ve shared here is all I’m willing to share with anyone, so please don’t ask for more detail because I need to figure out where it all sits in my brain first).

After the lab I sat alone and finished my coursework (and somehow submitted it on time), and then Uni Pal decided I needed a distraction and that we should go in search of ALL the Christmas things… We ended up heading to Whitechapel and eating fish and chips (proper fish and chips) in a greasy fish and chip shop where we sat for over an hour on plastic chairs. I showed her a lot of the photos that I have of my dog and I, and she said she wished anyone or anything would love her as much as that dog loves me – apparently she hadn’t seen a dog behave like mine and it made her heart melt. I wanted my dog then. And then we talked more. And we walked to a supermarket and Uni Pal hugged a giant Christmas tree and I almost bought a miniature one… And each time my heart hiccuped I now knew it wasn’t me being an idiot, but Skippy having a tantrum.

Health hiccups don’t care about Christmas. They don’t give you a Christmas holiday. But apparently, mine are now offering new gifts in the spirit of the festive season.

I’d like the world to back off just so my brain can switch back on and deal with reality.

Apologies that this post was the word equivalent of a skid mark. I can’t even even right now.

Does Anything Else Matter?

When my alarm went off at 8am this morning I was faced with a dilemma: to 9am lecture, or not to 9am lecture? This question was answered for me when I was swiftly taken hostage by the comfort of my bed, and proceeded to hit the snooze button on the five separate alarms I’d set until I had 4 minutes until the lecture started… And happily settled back off to sleep instead. From those that went to the lecture, I’ve heard that this was a good call. I was not the only one that missed it.

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I did all this instead.

I was waiting to meet with SC Uni Friend, but she wasn’t replying to my messages and by the time late morning arrived I was going stir crazy stuck in my studio/room/whatever you call it. So I took myself to Stratford Westfield shopping centre, and treated myself to a sourdough pizza. It looked amazing, but it was a disappointment compared to last time.

I spent the rest of the day sort of re-living my childhood. I wanted the gingerbread that I used to get when I was a little kid, so I found it and ended up accidentally buying a load of shopping that weighed so much I had to just wait for SC Uni Friend to rescue me at the tube station nearest my accommodation and help me carry it home.

And then I continued to re-live my childhood. I’ve been doing that a lot lately, clinging to the past, to familiarity – because familiarity feels safe and comforting and everything in the past (although there are some truly horrific events) I managed to get through, and somehow coped with better than current reality. It started with the fact that when I went home I put on the beaten up old trainers (seriously these things should go in the bin) that I hadn’t put on my feet since I was in my last year of sixth form but until that point had worn every day for two years. Since then, they are all I’ve worn. They are familiar. They remind me of a time that sucked (honestly I’ve almost died in those shoes, been suicidal in them, been bullied and torn apart and overwhelmed and even ran away in those shoes…), but that I was able to live through and beyond. They remind me of an unmeasurable and unbearable unpleasantness that I learned to deal with – one that I know how to handle now. And today that desperation to cling to things like that spread to the places that I went.

When we were younger, my parents used to drive us to London for the day and we’d go round the museums. Honestly, it was my FAVOURITE thing to do. So my friend and I headed to the Natural History Museum together, and it hadn’t changed at all, other than the ice rink and Christmas decorations now outside. It was amazing to be in this little bubble of my 11-13 year old life. The exhibits were all the same. The same huge blue whale hung from the ceiling and we both hunted for it for ages until we found this room that we remembered from our childhoods and we sat and just stared at this whale, at all these things I remembered.

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Looking at the blue whale. 11 year old me has never been as stunned as I was when I saw the size of this whale hanging from the ceiling. 

I spent ages hunting for the real human brain and spinal cord that I used to just stare at. I mean… now I can say that I’ve touched them in an anatomy lab, but back then it was so fascinating to me, and I wanted to go back and see it, even though it was less awe inspiring to look at now. We passed the giant model of a cell that my mum made me take a photo of before my GCSEs started. As a family we’d go to a different section on each visit so I’d only seen bits from each section once but it was just like I remembered only… Underwhelming now. When I was 11-13, I knew none of it, so it was interesting and informative and it blew my tiny mind, quenching a thirst for knowledge. Now, I’ve done all the human biology to degree level – SC Uni Friend and I could have written the exhibit. It was so sweet to think about how amazed I used to be by it all – it was my old heaven on earth, and being back in the scene of such memories… it was like this big emotional comfort blanket.

You know you’re a biomedical science student when you look at the human skeleton they have on exhibit (very basically labelled like this is your thigh bone. It’s very long) and immediately notice that it is the skeleton of a female… Then begin to discuss this with your friend, who agrees. It was like being face to face with the evolution of myself in that moment right there, and also like standing next to my 11 year old self. I found the exhibit I used to LOVE really boring and basic because I knew it all in so much more detail, but it was good to know that that thirst for knowledge I had at that young age had led somewhere – I was doing a degree in a subject that even then I loved.

We hung around and said hi to the statue of Charles Darwin sat looking over the entrance hall, and took photos of the big dinosaur that is soon going to be moved but that has been there FOREVER. And it was so nice. It was nice. It was like travelling back in time to before the worst – before the PTSD and the starting to almost die every few weeks and the hospital admissions that lasted years. Plus, I found that now that I’m older, I’m so much more interested in the science and anatomy of the other animals in the other exhibits, and the evolution of modern species and just… yeah. It was cool.

We waited for it to get dark and then decided we should probably leave, mostly because Pizza Express does 40% off for students on Mondays and Tuesdays and we refused to miss out on that deal.

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Looking over the ice rink (which is a lot smaller than the advertising made it look)
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I could not get over THE TREES. Look how beautiful!!! They only showed up on my phone in the dark.

Like I said, we’d decided we wanted pizza, so we headed for London Bridge. And I was so mortified that I wanted the ground to swallow me whole.

I got on the tube, and I walked to hold onto the rail, and this young woman gave me her seat. Because she thought I was pregnant. Now this is funny. SC Uni Friend thought it was funny and laughed and kept referring to me as “you two” but it really, really wasn’t funny to me. I’m a 20 year old girl, full of insecurities by nature, particularly surrounding my health. I laughed but inside I crumpled and screamed and tore myself apart and took knives to the walls of my mind and let the blood pour. Inside I hurt.

But… I did look pregnant. I mentioned in another post that my legs were extremely swollen and I couldn’t really breathe… And that situation remained but had slightly improved this morning. As I went through the day, my heart rate got faster and faster, it began to ache, I got breathless, and my usually concave stomach (not flat, if stand side on then after my ribcage my stomach sort of  goes in by a good couple of centimetres, because I’m hideously, unhealthily thin at the moment) had become convex. Fluid is pooling EVERYWHERE and it seems to be getting worse. I looked like my aunt had until she gave birth. Seriously. My ribs are usually further forward than my stomach, and today my stomach ended up further forward than my boobs. Look.

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My stomach used to be completely flat, but as my health has deteriorated it has sunk back past my ribcage. Not today… This was taken an hour before I was given a seat on the underground, at which point it was even larger than this. Might not look very big, but compared to normal it is RIDICULOUS and my stomach is so stretched and tight that it’s super uncomfortable. It’s all fluid, not a mini-me, just to clarify. Fun times. 

Anyway the pizza was amazing, and I got a few awesome photos of Southwark Cathedral, and awesome panoramic shots of the Thames and Tower Bridge and the Shard from London Bridge. The Christmas trees at the top of the Walkie Talkie building were so huge we could see them from ground level. London is really getting into the Christmas spirit and… It’s a little bit magical.

What’s also magical is that my family friend from Reading messaged me earlier today for a chat and asking to meet over Christmas. This evening my old friend from sixth form who was like a brother to me (honestly, we saw so much of each other and I helped him through a lot and we’d be on the phone for HOURS all the time) but then got a girlfriend and forgot I existed, messaged me for the first time in a year asking to meet up over Christmas. And Uni Babe has invited me to her family Christmas party on the 23rd. So that’s nice. Especially the two friends I haven’t heard from or seen for ages – familiarity. Old times. What my brain wants right now, to hide, to crawl back in time to before this.

I saved the best part of today until last.

In the very early hours of this morning our family was given an early Christmas present that nothing could top – a new family member, new life. My uncle, who has lived in Hong Kong since he was just older than I am now, welcomed his new baby daughter into the world with my aunt via a pre-planned c-section. I slept from 4pm-9pm yesterday, and woke to see a post online stating that my uncle (who never feels anything really) was “feeling blessed” above a status which read T- 2 hours 9 minutes.

I fell asleep before those two hours passed, but woke to a picture of an ADORABLE baby girl with a lovely name, and instantly I wanted to hold her and tell her happy birthday and say hi to the youngest grandchild from the oldest grandchild. It was just a happy day for our family. My granddad, who has social media but never uses it, shared the photo of his newest granddaughter, and it melted my heart a little (also because the caption was “h” because he seriously has no idea what he’s doing). My mum messaged me and eventually called me because she was so happy. My uncle called everyone… We all talked over social media… It was just nice. So anyway, I got a new baby cousin, and sometime soon I’m going to be so happy about that.

Does anything else matter?

Every Seven Seconds

Alone, at 2am, it hit me.

Weeks later than it should have, it hit me, and I was powerless to it. It wasn’t a near death experience this time… It was an emotion. It was something I should have felt but haven’t been able to for weeks, and it hurt so much that the heaviness was almost physical, it was an aching within me. I didn’t cry. I sobbed. Silently. Uncontrollably. And there was no dog for me to cling to. There was nobody to talk to, because I live alone.  There was just me, and this fear, this panic, this one single thought.

I don’t want to die. 

I’m not sure I fear death, in fact when I’ve been ill enough that I should have died it would have been a relief, an end to the immediate and intense suffering my body inflicts upon itself… But I’ve spent so much time in hospital that I haven’t lived yet. Not in the way I want to. I sobbed for something I will never be around to consciously miss. I sobbed because I was scared. Finally, here it was. The fear. It was a fear I had dissolved in my acceptance, a fear I had run out of the energy to maintain, and now here it was, fresh.

I’ve been told by many different doctors on many different wards that I could die. I’ve listened to doctors tell their colleagues they are losing me, that they can’t wait, that this is it. My organs take it in turns to rebel, to put me in an ICU or a cardiac ICU or wherever else I may end up. Sometimes they even team up. And I pull through somehow. I’m told that my body is playing Russian Roulette and it’s taken so many shots at me they’ve no idea how I haven’t found the chamber with the bullet yet. But oddly enough, it isn’t that what makes it hit home. Yes, nearly dying five times in three weeks shook me.

The thing that first got me was the fact that twice in three days I was nearly killed by a health hiccup that I never really classed as life threatening – and it wasn’t the first time but this time there was no thought or denial to slap over the wound that left. Although that triggered the start of everything, it isn’t what made me reach break point. It was hearing of other people my age who had been killed of my health hiccups that lit the fire. Most recently and specifically, hearing that a 19 year old boy treated by one of my health professionals had died of something I was already terrified of, after having evaded death due to it many many times. Type 1 diabetes killed him. And at 2am, I ended up watching a short film about diabetes and stem cell research. I ended up on the website about why the research is so important, and after scrolling down the page was faced with huge, great big letters that read, “Every seven seconds a person dies from diabetes.”

And I just couldn’t any more.

I don’t know what it was, but I now I should have been feeling it for a while, this panic… But not panic, but terror… But not quite that… About the uncertainty of the future, about how volatile my health is and how quickly it can take my life without warning and with me being aware but unable to stop it (as happened the other night when I just about saved my butt). It hit me like a slab of concrete in the chest and knocked the air from my lungs as I curled up where I sat on my bed, powerless to this thing tearing through me, these sobs bursting out of me. I sat there silently, crying so hard I couldn’t breathe in, and then gasping in air, trying to get a grip, and just going all over again.

Because the “harmless little normal thing” was suddenly this huge life threatening deal that it’s never felt like but always has been. There is no safe space in my body. I can go wherever on earth I want and I still won’t find a safe space because  I am tied to a ticking time bomb and it has to many fuses I don’t know which one is going to detonate it first. All I can hear is the hissing of the fuses burning down, and I stamp on them and try to cut them but they don’t stop burning and they don’t detach. Sometimes other people throw water on them and they stop burning away for a little while, and then out of the blue they reignite, or are set back alight by the health hiccup fuse that is burning alongside them. And I don’t know when. I don’t know when it’s all going to go off. I just know that it will and I don’t want it to. I really, really don’t want it to. And for the first time in… Potentially ever, I sat there and I looked at this statistic and it hit home. It hit home how fragile my health is, how fragile my life is. And in another first, I couldn’t find any way to handle that. At all.

I went to the website quoted as the source of the statistic that woke me up, and there it was, in black and white:

  • “Diabetes caused 4.9 million deaths in 2014; Every seven seconds a person dies from diabetes” source

  • “Diabetes caused at least USD 612 billion dollars in health expenditure in 2014 – 11% of total spending on adults” source

There’s so much misunderstanding around this condition. People, even people doing my biomedical science degree, think that I just can’t eat sugar, or that I ate too many sweets when I was younger or was overweight (confusing type 1 diabetes with the stereotype associated around the development of type 2 diabetes, in which the beta cells are totally fine and still make insulin). Type 1 diabetes is an autoimmune condition. The body doesn’t make any insulin at all. Insulin is required to let glucose into cells so that it can be metabolised. It also helps regulate potassium levels, which can cause cardiac arrest if they drift too far away from normal. Without metabolising glucose, you can’t carry out respiration efficiently. You don’t make enough of the molecule your body uses to provide energy (ATP), and the methods your body uses to generate it instead… Kill you. Now let me tell you why it gets scary.

Low blood sugars can kill within hours. They cause death through seizures, brain injury, brain swelling… Your body shuts down, because it has no glucose. Blood glucose levels drop without warning. Sometimes when you exercise (but sometimes that makes them increase instead for no apparent reason). Sometimes if you forget to eat. Sometimes because you did the maths wrong or you worked stuff out wrong. Sometimes because when you injected you hit a blood vessel… So many reasons. Few of them within your control.

High blood sugar levels are toxic to nerves, blood vessels… And can cause chronic health issues with other organs etc. When sugar levels in the blood are high, it means the sugar isn’t getting into the cells (unless you just ate way too much, in which case it’s slightly less dangerous and will kill you slowly instead of within hours). Your body has compensatory mechanisms, so it decides to get rid of all the toxic glucose in the urine. So you pee litres more than you can take in and become severely dehydrated despite drinking litres and litres due to an unquenchable thirst. This also wrecks your electrolyte balance. If sugar can’t get into your cells, your cells basically start to eat… you. They break down fat and muscle, and produce harmful chemicals that will kill you as they accumulate. This can lead to multiple organ failure, brain swelling, brainstem herniation… And irreparable damage.

People don’t see all the work you have to put in to try and stop that happening. When you eat, you have to factor in your blood glucose levels and calculate how much insulin you need to give to correct those, then how much insulin you need to give for the food, and then how much insulin is already active in you and therefore needs to be removed from the dose. Then you inject or in my case, use a genius little pump called Einstein who will calculate all this for you if you tell it how much carbohydrate you ate etc. You have to constantly monitor, because machines break and bodies react differently. What works brilliantly on one day may leave you in a life threatening situation the next. Stress, illness, exercise, the amount of fat in a food, the type of carbohydrate you ate, the length over which you gave your insulin… are just a few of the factors that can massively change the way your body responds to what you do to try to help it.

And here’s what people don’t appreciate. The longer you have diabetes, the more at risk you are of complications. What does diabetes do? What does it cause? It is the (now potentially just “a”) leading cause of blindness. It is the “most common cause of kidney failure” in the US (source) “About 60% of non-traumatic lower-limb amputations among people aged 20 years or older occur in people with diagnosed diabetes.” with around 73,000 of them due to diabetes in the USA during 2010 alone (source) It causes neuropathy (damages nerves so you can’t feel things, or so that your autonomic nervous system that controls heart rate etc. goes haywire). Diabetes is associated with cardiovascular disease and heart attacks, and deaths due to both of these conditions are 1.7 and 1.8 times higher among diabetics respectively (source). Add into that strokes and whatever else, and suddenly it isn’t so harmless. Insulin is underrated. Pancreases are underrated.

I don’t have any complications due to my diabetes at the moment, other than some changes to my retinas that come and go. I have plenty of other health hiccups, but they developed of their own accord and mostly they scared me more, although they are effected by my diabetes (because it effects pretty much everything). It’s the only health hiccup I’m willing to talk about in detail on here. There’s such a misunderstanding and lack of awareness around it, yet in the diabetes community at least once a week I am sent a story about another child or teenager or some other poor person who died as a result of undiagnosed type 1 diabetes, or diagnosed diabetics who got a stomach bug that caused their diabetes to become out of control, or who slept through low blood sugars and never woke up, or whose blood filled with toxic chemicals that made their brain swell… And there’s such a stigma around it. People think all diabetes is the same, and it isn’t. Type 1 diabetes is not caused by eating too much. Type 2 diabetes generally only causes chronic complications and isn’t associated with the capacity to kill acutely like type 1 does. And it still frustrates me. Because this is what it does. (If you feel like somehow sharing this and helping me raise awareness of the reality of something I only just accepted myself after having it for almost 2 decades then… Please do – unless I went/go to school/uni with you, in that case… Yeah).

And in the early hours of this morning. I realised that this normal, harmless thing wasn’t harmless at all. I took on the role of my beta cells, and I only just realised what a significant and scary job that is. This is the reality that nobody really knows is there.

But I got a grip. After about twenty minutes of pulling myself together and then just crumpling into a sobbing heap all over again, I got up (literally), I paced around the room a little, I waited for the numbness to settle, and I gathered myself back together. And then I curled back up on the bed, and I went to sleep. And I hoped that all my health hiccups would stay happy until morning. And I decided that I’d tidy my room and catch up on work and go and see some of London at Christmas (as I want to).

All to the backdrop of Christmastime.

That’s the point, you fall apart but the world keeps turning. No matter how much I’m given to deal with, time won’t stop to let me deal with it. So what else is there to do other than to switch off and hope that it hurts less in the morning?

By the way, it did (hurt less). In fact, it was forgotten. I guess when things get rough, you just have to keep moving so you’re harder to hit, and hope that life has poor aim.

No way but through.

 

Vicious Cycles

I can’t figure out how to start this post, and the more I think about how to start it, the less of a clue I have. So I guess… Here goes nothing (honestly, it’s taken me two hours to write those few words, so don’t expect much from this post).

I don’t want to talk about appointments. I tried for a very long time to elaborate on that point, and I can’t. In yesterday’s appointment I broke down and pathetically said I didn’t know how to do it any more. In today’s appointment… Asdfghjkl. Doesn’t matter. I ended up booking further appointments with each of the healthcare professionals I saw. I do so because I get intimidated and feel forced, and regret it once I’ve left. So I re-booked one for January with this person, because I pretty much refused to come back any sooner. Apparently I just have to get in touch if I feel I need to see her before then. But- Yeah no. Not talking about that sort of stuff. I’m sorry, I tried. I’m done with that, I need a break. It woke up a huge amount of frustration within me and just. No. 

I usually use this blog as a place to let that sort of stuff out and rearrange my thoughts, but I’m (finally) starting to feel things again and I cannot face the emotion that comes along with my thought processes, particularly as I’ve started to go to hospital appointments again, and am feeling completely smothered and overwhelmed by my health. I had a few months where I just couldn’t cope with my health, couldn’t face it, and felt so unsupported that I didn’t see any point in my appointments. Mentally I couldn’t deal with my physical health at all, and my way of dealing with that was to not – to bury my head in the sand and self-destruct because emotionally that felt safer (I mean to be fair, going solo is so much more stressful but I saved my own butt so much better than DrDidn’tCare did). I didn’t choose to re-engage. In order to continue to live, I had to. I need to see my cardiology team about my heart – it’s doing weird and wonderful things. I need to see my urologist because my kidneys are really not functioning as they should (not passing water for a long time, and then passing blood and protein). But I re-engage with one health hiccup and end up with… 4 appointments in two weeks in two different hospitals. And after so long, that’s so overwhelming, it’s way too much. I can’t face the rest. I am not in any different frame of mind. I still don’t know how to handle it, and people making so many appointments so quickly and trying to push things and act like there isn’t a huge mental issue that needs to be addressed around all of my physical health… It’s overwhelming me. It’s going to make me freak out.

In short, reality is closing in and piling multiple layers on top of me that I’m not ready to be buried under yet. So yeah, this blog is normally my place to just let out whatever I need to let out, whatever the real world just doesn’t understand or respond to in a way that is helpful to me… But this blog is also a coping mechanism, and it is whatever I need it to be. Right now, I need it to be a place to hide. Right in this moment, it’s kind of a shelter away from reality. I can separate my blogging self from myself and control what goes down onto this page (is it a page if it’s on a screen?). I never wanted this blog to go on about my health so much, because a lot of people have made me feel like it is something to be ashamed of, something to keep under wraps (hence why here is my only outlet for that stuff) and a lot of people don’t understand. Many times before I’ve tried to stop myself talking about my health here, but it always needs a place to go.

Tomorrow maybe I’ll be able to talk about the appointments. Right now though, my mind kind of collapses and my emotions completely erupt at the thought of trying to words about that. So let’s not.

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This is a picture of the Christmas tree in the clinic waiting room, but I’m including it because it’s the best attempt at a Christmas tree I’ve encountered yet and I didn’t go anywhere in London to see Christmas stuff today.

I went to a lab straight from my appointment. Same Cardiologist Uni Friend met me outside the hospital and we walked to our lab together. It was being run by the most supportive and helpful lecturer I’ve encountered this year about all the missed work and everything, and ironically enough, we were looking at (and preparing our own) slides of a rat pancreas and staining it with antibodies that attached to insulin so we could see which cells were beta cells. Let me tell you as a type 1 diabetic, beta cells are underrated. If you have functioning beta cells, treasure those little guys. Anyway, nobody knew I was back in London really. Uni Pal, WR Uni Friend, and Uni Babe were working together. Suddenly these arms wrapped around me from behind – Uni Pal, and she was telling me she’d recognised my curly hair and it had just made her day to see me there and she was so happy I was back. The three of them were so excited to see me. Uni Babe just wrapped her arms around me and kind of reassuringly rubbed my arms without saying a word. They were so happy to see me. So was Portsmouth Uni Friend. They were surprised. They didn’t take anything personally. I was so overwhelmed by the experience of people talking to me normally that I went all involuntarily mute again for a while.

I got to do what biomedical science students do. And that was kind of… I don’t know, but with my whole degree hanging on a knife edge of uncertainty right now, it was kind of… Appreciated. I thought my brain was halfway back to normal in terms of functioning, but discovered I was wrong – I still couldn’t think. This became apparent when I attempted to science and realised that I had no idea how to science. Completing the lab didn’t improve the situation. At the end, when I went to get my barcode sticker (to put on the cover sheet of my writeup in order to prove it is my own work and I was in the lab session) I a) forgot my name and had to be reminded of it, and b) couldn’t get the sticker off the piece of paper, so the most helpful lecturer of this year decided to help me out and just peel off the sticker for me.

I planned to go somewhere in London and see some Christmas lights or something, but ended up popping into the little mini branch of a supermarket right by my accommodation, and with Same Cardiologist Uni Friend egging me on, I bought food. Like, actual proper food to make an actual proper meal. They didn’t have paella rice or spaghetti, so I got some stuff and made seafood linguine… (I was trying to tempt myself to eat, so I decided to make something I’d always wanted to try but couldn’t afford in restaurants).

Of the 7 friends I’ve encountered today, a few really were not helpful to be around, just because they were far too enthusiastic or energetic or just so clueless/cluelessly optimistic and oblivious to the state I’m in despite numerous explanations. I can’t blame them for not relating, I just don’t want to hear about nude photos and stuff. I suddenly discovered how to feign this complete happiness all over again. It’s this thing I’ve hidden behind for a very long time – wear a smile, act over enthusiastically happy, and you feel a little lighter, people don’t ask questions. This time, that happened (albeit to a lesser extent), but over and over in response to suddenly being thrown into what was just a few minutes of social interaction, my brain was all just end your existence. I’m not sure why, but it feels like the only right thing to do. And I don’t know what the problem is, I just know that’s the solution. There was no emotion behind it though, no sadness to push the thought. Just an alarming thought that kept resurfacing – a little lump of raw longing that bubbled up in my throat.

But I kind of miss them. Not all of them – which sounds bad, because they’re such good friends, but  some of them really are not helpful to my emotional state right now and they have, predictably, stopped messaging as often (most I haven’t heard of for over a week) because when I freak out and withdraw, eventually people get tired of just being there. Uni Pal messaged me to say that seeing me had made her week. That was sweet. At one point she was messaging me every other day just to say she cared and didn’t expect a reply. I didn’t expect that to be maintained. But anyway my point is I want to do Christmas stuff, and I want to try and start hanging out with my friends. Maybe just one at a time, because I think that’s all I can handle. And there are only about 3-4 people whose company isn’t going to break me right now, but I’m trying.

My bedroom is a tip at the moment. Or studio. Or flat. Or whatever it is. My bed has so much stuff on top of the quilt that I have to sleep on top of the covers. The floor is covered in… Everything. I got rid of five bin bags of rubbish this morning and it’s still a complete mess. I’m a neat freak, but when I get in a bad place mentally, my room becomes a tip. That then stresses me out more, which makes me care even less about tidying, which makes things even messier, and so the cycle continues.

I’m stuck in a lot of vicious cycles at the moment, but I’m trying to  turn them into home straights.

Sorry for this post guys, thanks for reading it. Guess I should go back to the start and write an intro now?…

Bite Me.

The last couple of days have been something comparable with the lovechild of a hurricane and a rollercoaster… on steroids. Life’s favourite time to kick is when you’re already down. And yet… the kicks don’t even hurt any more. Not at the minute. There is no capacity to hurt, and when there is, there is no capacity to hurt any more. I’m starting to vaguely feel – not fully and not properly, but at least a bit more consistently.

This is where I’m going to make a weird request, because (unusually) I remembered that a handful of people are going to read what I write here. Specifically, that concern is about the 2-3 people reading this who met me before they ever read any of these posts. If you met me before this blog existed… Please don’t read the rest of this post. Not yet, anyway. I kind of… It isn’t something I want people who know me like that to really find out in a post, I think? I’ve chosen not to really talk about it to people I know yet, because hey it’s probably nothing, and I know I can’t stop anyone reading on, and that asking you not to builds a whole lot of intrigue. But please hang in there for a while. 

I mean… Now I continue, I guess.

I had a hospital appointment yesterday for a totally new thing. It isn’t new to me, but it’s the first time I’ve actually had it looked at. Long story short, earlier this year I started getting minor nosebleeds from one nostril. Then I noticed a small lump. The lump grew, the nosebleeds got far more frequent and much worse, and now there’s a constant trickle of blood down my throat and every hour or two, a red river all over my face. The lump now obstructs my entire nostril, is hard and has a bunch of blood vessels over it, and has recently changed in appearance. The back of my mouth has started to feel weird, and on the same side it looks a little different (like red and weird). I decided it was nothing, and certainly that something as pathetic as my nose wasn’t worth bothering anyone about. But I mean… It’s A LOT of blood now. So I went to see an ENT consultant, who was the first person I told about it to decide it may be a good idea to look at it.

He had an appalling bedside manner and was blunt and clinical and methodical, which I liked. He sat me in front of him and  looked at it, without saying a word got some equipment and briefly explained what he was going to do before he stuck a camera down my other nostril and into my throat, and then looked into my mouth… And then we sat across from each other at his desk and he looked up at me and without any build up said

Unfortunately there’s no treatment option other than surgery. We need to remove the mass and the underlying cartilage. Do you have any questions?

Yes! So many questions! But all I could say was… Is that going to hurt?

It’s a something-I-can’t-remember-because-I’m-half-asleep-oma, he thinks. Now I mean… Part of me had been expecting this little lump to need to be removed, but a much larger part of me thought I was going to be laughed out of his office, or maybe he’d make it bleed and just cauterise whatever bled and send me home all fixed. I did not expect him to say that there was a whatever-it-is-oma with exposed cartilage that is on/adhered to the nasal septum. Like… Surely exposed cartilage should… Hurt? Anyway he wanted bloods there and then, and a CT scan ASAP. He said he’d phone with the results. But when we went to book it all, we said I couldn’t do the scan until I’m back from uni. The first day I’ll be back for is the 19th. The scan is the first slot they have on the morning of the 20th of December. That’s… A lot quicker than I was expecting them to arrange it.

My mum and I then went for lunch, because she said that this time I had been “ok-ish” to have around. I didn’t want to go back – the whole way there I was dreading it, and she didn’t really want me to leave either I think. It was nice. We stopped at a random pub chain and ate some super nice chicken. And then we drove back to Mile End. And I was in this car that I knew was about to drive right back to exactly where I wanted to be, but that I wasn’t going to be in it when it got there. My mum pulled up outside my accommodation, got my stuff out of the car, we said a brief goodbye, and then she was gone. I hate that there’s nowhere to stop where I live. Goodbyes aren’t proper.

I went back to my room, let the door swing shut behind me and… Sobbed. I just sobbed. Uncontrollably. The room was so isolated. So… Not a family home.

And then my mum called to tell me I’d forgotten something, and I couldn’t stand speaking to her because I just wanted to go back to my dog and stuff. Same Cardiologist Uni Friend called me up and talked to me for a few hours. My plan was not to talk about my stupid nose until I know about it for sure and stuff. Oddly, I’m not phased by the thought of surgery or anything. I thought I would be or should be, but y’know… I don’t know whether it’s because I feel so ridiculous about it being my nose or whatever, but this one just doesn’t feel like something to sweat over. If the lump is harmless or has the potential to stop being harmless or if it isn’t harmless at all, the treatment is the same – get it out. I’m up for that – just get the thing out. It’s annoying, more than anything.

But anyway I was crying and I was like I don’t think I can do this. I didn’t know how to deal with anything, even for a day. I ended up almost falling asleep on the phone to my friend, and saying stuff that made no sense because I was falling asleep, so I let her go and cook her dinner and curled up fully clothed to go to sleep. My sleep was broken, it always is, but if you discount the 17-18 times I woke up or got up to treat my health hiccups, I slept from 7pm round to 9am. I was so tired.

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I did find time to tidy up and try to make my room look a little Christmassy. It isn’t much but it’s the best I could do.

And then I went to my hospital appointment. And as I sat there by the Christmas tree waiting to go in, I checked my uni emails, for some reason. And they are STILL trying to find ways to kick me out. Except this one may work, but is also ridiculous. They are getting the national crediting body (external to the university) involved, because I missed lab sessions so they are saying I might not have demonstrated the lab skills needed to become credited as a biomedical scientist. So many thoughts. Firstly, we do the same procedures in every lab – spectrophotometry, micropipettes, serial dilutions… It’s basically the same. The labs I’ve missed… Some were on the computer, one the theory was done at home… I’ve done all the skills before. To death and back. In fact, I’ve probably carried them out while literally dying. Secondly, there are people on our course who have never been to a single lab because they can’t be bothered. A couple of weeks ago, someone asked us where we are meant to submit lab reports to and how we went about it, because, half way through the first semester of his SECOND year, he had NEVER been to a lab session. Thirdly, why did nobody tell me that at the end of first year?

As if that appointment wasn’t bad enough.

I walked in, and we started talking. And she told me this story about this boy who didn’t look after his diabetes and didn’t think it would kill him but was warned and warned, and then died. Except she didn’t tell it like that. It was more emotive. And I was like… I have so many things to be scared of. And I told her about my heart being more of a pain in the butt, and my kidneys being a pain in the butt, and how I hadn’t told anyone about either of those things. But somewhere before that, or maybe during it, I just broke down. I don’t cry. If I do, it isn’t in front of people. It certainly isn’t in front of health professionals. And I just couldn’t stop. I will elaborate on why and what I said at a later stage. But out 45 minute appointment ended up going on for over 3 hours. She pulled her chair out from behind the desk and moved it so our knees were almost touching, and she leaned forward and we just talked. About it all. About all the things I couldn’t face. About how screwed my body was. About what triggered my PTSD. About where I wanted to go (in terms of a treatment plan or whatever) and all I could say was I don’t want this any more. I don’t know how to deal with it all, I just can’t cope. And she’d stop, and we’d go back, and we’d go through a whole other thing like my weight loss or fluid retention or mental health or whatever else until we ended up right back at that point. She was patient.

Anyway. I got to uni campus at 2 and sat with Same Cardiologist Uni Friend and Italian Uni Friend (two people then knew I was back, which hadn’t been my plan). I had an assignment due in at 5 that I hadn’t started. I got quite a way in, and then my computer restarted and I lost even the stuff I had saved. Life isn’t giving me lemons, it is squeezing them in my cuts. It felt pointless anyway, in light of everything else on my plate, especially as all this work may literally be for nothing now.

I concluded that the only state in which to submit my assignment would be on fire… Because that way it could never be marked, and I’d save everyone else by destroying theirs too. I was just over half way through when the fire alarm went off. I sat there with less than an hour to go and 1/4 of the thing still to do like well at least if I burn to death they might go a little easier on me. 

I was trying to care, and it just didn’t matter. Until eventually I started to focus on it instead of the everything else in my life, and putting the tiny amount of importance I could spare onto my coursework distracted me as we watched a guy try to turn his canal boat and have a crash in Regents Canal (right by the window).

I finished the thing on time. Same Cardiologist Uni Friend had to print it on her account because I forgot my student card. Italian Uni Friend had to  staple it because I couldn’t get into the library. I submitted the thing, and then I stood in the middle of the emptying science building, held my arms up in victory, looked up through the opening in the ceiling of the lobby that showed the first floor lab, and just shouted (completely out of the blue, taking myself by surprise)

“BITE ME”

Then three of us went to Stratford Westfields, where I bought a large meal in McDonalds, accompanied by a free Crunchie McFlurry (because student perks)  after I realised I hadn’t eaten all day and it was 6pm and I felt I needed something good after my day (not going to lie that’s the only reason I went). It was so cold out and I had only left the house wearing a jumper, so by the time we got there I couldn’t feel most of myself, my hands seemed to have so little blood in them they looked rather alarmingly alien, I was shivering violently, and got electric shock pains in my legs if I moved them beyond a certain point… So I bought a super cheap ski jacket… And 2 jumpers… And a Christmas jumper (all for under the price of a jumper in any other shop).

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Christmas at Stratford Westfields shopping centre. Maybe I should make it my aim to see a different part of London at Christmas time every day…?

I went Christmas shopping and got three things for my little brother to make up for not getting him a birthday present. I bought myself a book entitled Death by Stupidity – 1001 of the most astonishingly bizarre ways to bite the dust because I wanted to feel better about the fact that I’d nearly died a lot and… It hadn’t been in ridiculous ways. It’s a pretty funny book (also, people die in really, rally stupid ways).

And then, because I felt like it, I bought myself a second dinner – an AMAZING pizza.

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Only two slices of this beautiful thing made it all the way back to my flat.

And now this post, that I mostly wrote on the other side of midnight, but that will now be posted today and probably make no sense (just imagine that every “today” is actually “yesterday” i.e. the 1st of December).

Tomorrow lectures, then straight to another hospital appointment, then straight to an assessed lab session, which means I’ll have another bit of coursework due in another week. One of my friends is already fully into a revision plan already. Everyone else I talk to only has a maximum of 7 weeks of notes (and that person was only that far in for two modules out of four). Everyone is as behind as me (I have notes in lectures until about week 5, handwritten final notes for… Week 1). And they’ve been out in the real world living life, so that makes me feel a bit better.

Whoa this is way too long. I’ll stop. Bye. I mean, it wasn’t even that bad. It’s just been full on, especially with starting to feel a little bit.

Time for another dinner. At 00:20am. Like I said, bite me.

Nothing, Really

One of the first things I did this morning was sit up and spit a mouthful of red froth into a glass. The blood at the back of my throat caught me by surprise as I laid there – a little cough and suddenly hello red stuff. I wasn’t too impressed at my body’s start to the day. It probably should have alarmed me, but my brain wasn’t really capable of that, even when reality tried so hard to coax some sort of reaction out of it.

I was starting to feel again, slowly. And then today I woke up… Hollow. Not numb, because numbness feels heavy and thick like a fog, but hollow. Last night my heart decided to have a little tantrum. My scientific, logical brain half kicked in, and then I just rolled over and went to sleep. I don’t really… I don’t really know what I’m doing or why I’m writing this.

My mind has been all over the place – mostly hollow, occasionally and very briefly sure of itself, and the rest of the time completely nonchalant and apathetic. I have an essay due in on Wednesday. I wasn’t in the tutorial in which the essay was set. I was in hospital for most of the time we were meant to write the stupid thing, and I really don’t care about it. Not a conscious effort to not care, or a deliberate dismissal – my brain just cannot engage enough for me to essay. Or to find any motivation or concern.  But at some point I am going to feel all the feels again, and I might do my old familiar thing of throwing myself into uni work with such gusto that I completely lose who I am (which I guess is usually my intention). Or I might not. I might become this fragile thing that breaks in ways it can’t understand and falls apart under the slightest pressure. If either occurs, the last thing I’ll want is the university on my back. But I couldn’t even think I should do that. The first essay we were ever set on this degree course, I produced in one day. The day before it was due in, to be precise. So I mean… It’s achievable. If my brain could fill itself with something (my attitude has swung between a complete apathy and a momentary fleeting thought of come on then university, bite me – neither of which are helpful).

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My morning in a photo – a pile of work I can’t even think about, the hat I put on and haven’t removed since, headphones I thought I might use but don’t even know where they are now, and Einstein demanding that I change his syringe and lines and put a new needle into myself – which then managed to fall out so I didn’t get any insulin for several hours.

I literally have no idea what I’ve done all day. I sat down to work at about 10am, in a place where my mother could see me, to appease her and quash the flames of her judgement and frustration around my inability to university. I’m still sat here at 5pm. I haven’t gone anywhere else (other than to the hob to cook myself a stir fry for lunch, and go to the bathroom). Most of the time, my laptop has sat idle for so long that it goes to sleep. And yet, I am still staring at a blank document. I’ve done nothing. I haven’t listened to music. I haven’t sat on my phone. I think I’ve literally sat here all day with time passing and me totally unaware that it is. I think. Maybe? I mean, the TV has been on in the background, and I probably watched it at some point. But other than that and cuddling my dog, I’ve genuinely just sat doing nothing for hours. Which y’know… Usually puts some sort of thought into a brain. But no. A deadness kind of settled within me. I also seem to have no time for most people (there are a few exceptions… My hospital friend…) which makes me sound like an arsehole, but I genuinely don’t know how to handle that right now. I don’t know how to respond to stuff.

I really need to find some motivation or ability to care from somewhere, because I also have a lab report due in on Thursday, and no time to work on Wednesday because I have hospital stuff and then I’m going back to uni. I don’t want to go back to uni. I don’t care about this stuff. I don’t actually really seem to care about living until it comes down to the wire and I realise that in reality I’m so scared of not living that my mind just decided not to care at all so it wouldn’t break.

It’s weird. My brain knows how it should feel and how it should respond, and when it is able to, it projects that. My friend who has the same cardiologist as me (the one who stayed on the phone with me for 9 hours the other night and saved my life) sees right through this, but doesn’t know how to respond. She gets me on a level that nobody else healthy really can at the moment – we keep sending each other messages with the same thought at exactly the same time and it’s seriously freaking us out. She also seems to think I’m super wise, and says I’m “Like yoda but less… ugly.” Somehow I’m completely dead but managing to throw words at her that help her out and seem to make her think I have a way with words. I hate my brain for being able to do this. Why can it help… Well basically NOT ITSELF?!?!?!?! See now there, you’d think there was confusion or frustration. There should be. But there isn’t. But you wouldn’t know that, because my brain seems to have laid a defence mechanism on top of a defence mechanism.

My attempt to induce some sort of something yesterday was to buy myself a fluffy christmas onesie and a christmas jumper and my second new wooly hat in two days (I love hats. It’s a thing. I’ve been wearing a bobble hat all day). It didn’t induce anything other than a sort of screaming sound from my bank account as it haemorrhaged money. I think maybe going for a long run might sort of fix this, because endorphins bind to the same receptors in the brain as opiates do (so a runner’s high is a genuine thing). If even endorphins cannot induce some sort of something, then I’m pretty messed up. I say this, but I don’t have any motivation anything to even put on some running shoes and go for a run. Plus, my heart seems to be stressed out enough by me sitting down at the moment, and I’ve started to retain water like a pro.

So I mean… Basically the conclusion to this complete awful nothing of a blog post is that I don’t know what I’m doing and I don’t know what to do.

Well. This post was about as productive as my day. I might not post it. I might delete it. We’ll see, I guess. This may be the biggest pile of junk I have ever written. If it had a consciousness it would be having an existential crisis in light of its pointlessness. I’m sorry. Thanks for reading it, and for the comments lately too. They’ve been… Pretty awesome actually.

I promise you I’m not normally this much of a complete arsehole. I’m just so dead inside right now, and I’m trying not to be, but y’know, there isn’t much of me that even seems to be capable of… Things.

Thanks for sticking with this. This post, this blog (for those that follow it) and erm… Yeah. I guess.

An Unhelpful Familiarity

Nobody can really understand why I’ve put myself back into an environment that is so unhelpful to me. The people in this environment fail to see the damage they do to me. They tear me apart and say it’s because they care, they take out their feelings on me as if I am oblivious to the impact it has on them, and forget I will have feelings about the situation myself (and that I am all too aware of the impact my health has on them without them driving that reality through my heart like a knife).

I was woken up today to go and have the flu vaccine at my local pharmacy. The local chemist took me into what can only be described as a converted broom cupboard, and stuck a needle in my arm. He went to ask me if I was ok with needles, but this guy has seen my prescription, so he actually laughed at his own question before explaining that he didn’t really need to ask that to someone who stuck a lot of them in themselves every day. He’s an awesome guy. Not only a gentleman but a gentle man. He reacted in the way that most health professionals do when they hear that I do biomedical science. Our conversation instantly veered off in this direction, about science and the future and options and stuff. It was actually really helpful to have this discussion with a pharmacist, as I’ve had this conversation with so, so many doctors (many of whom have done my degree too), but never really with anyone from a different field.

I’ve decided that I want to do a masters degree, but my mum told me immediately that that was far too expensive for me to do. After the masters, I’m still torn between journalism and research, but I think I may go down the PhD route… I say this, and I don’t even want to finish this degree. Anyway, the pharmacist was so helpful to talk to because he’d done a masters and a doctorate after his degree, and he told me to go for it. My mum then, to my surprise, told me to go for it. If this woman changed her mind any more often she’d basically have to be the British weather.

My mum and I went out with my grandparents to see the new home they will be moving into as soon as they can sell their house. On the way my mum got a phone call from a family friend (the one in his late 30s who calls me sick note and thinks its funny to joke about me not living until my next birthday or Christmas and stuff) asking if he could take my dog for a short walk. That was at about 12:30. It’s now past 9pm, and my dog isn’t back. He isn’t coming back, because instead of taking him for a walk, the family friend took him to work with him on a building site over an hour away, and then decided to keep him there. My dog. My dog that I can’t sleep without. My dog that gets severe hip pain after walking a few hundred metres so I know will be up all night crying with someone who doesn’t know how to help him or probably where he even hurts. My dog who is the only reason I am in this house. My furry rock. The thing holding me together. So when my mum told me casually that the family friend had called and said he wouldn’t return my dog until tomorrow, to my absolute horror, I cried. I just broke down. I felt a thing. And it hurt. And I wanted my dog.

He gives me the safety I need to sleep because he wakes me up when I become unwell. I was away for him for one night on Wednesday night and in that night I nearly died and had no idea until it was almost too late. He wakes me from my nightmares and holds me while I shake, sometimes not even remembering the dream but riding the adrenaline rush it induced. He is the only reason I came home. I hate this house. My mum is so… No understanding. She’s so stress about things that just don’t matter like how her kitchen looks, and she gets angry at me for not putting away all the washing up that my family leave on the side and other ridiculous stuff… Anyway. I was thinking of maybe going back to London on Sunday night, which means that this is the last night I would have with him, and I was robbed of that by someone who isn’t even part of this family. I hardly ever see my own dog any more, and he’s old and his health is failing him, so the time I get with him means so much to me. I really need him right now. I want to hold him and just never let him go whenever I am with him, and for the first time in his life he cries when there is a shut door between me and him. (Trigger warning, maybe? Probably. Ok just… Warning)

I went upstairs, and I sat in my dog’s bed (which is an old quilt folded up on the floor next to my bed), and I wanted to calm down. So I went to reach for him, because he calms me down… And there was no dog. So I cried even harder and I was just like WHAT ARE YOU DOING SELF??! And I couldn’t cope. Without my furry rock, there was nothing to cling to in the rising water of whatever was in my mind, and I drowned in it. I thought about hurting myself. I really, really just wanted to hurt. Kind of as a punishment for being so stupid and pathetic, but also because I was crying but had no idea why because the feeling wouldn’t fully happen, and being emotionally dead is so weird that I just wanted to feel something, just to remind myself that I was alive. And then my brain jumped the gun and it wanted to do more than hurt. It wanted to go. I didn’t just want to, I ached to. I physically ached. I have not wanted to die like that for a long, long time (except this time, there was no other emotion behind that feeling, usually there’s a whole jumble of thought and feeling fuelling it, and this time it was just there). I didn’t even want to be dead, I just couldn’t cope and death was a solution (I know it isn’t. There’s some rationality in there somewhere). And I know it’s so pathetic that a dog can hold me together, but in my current mental state he’s the only thing that can. I can’t understand how he helps me. I know I’m pathetic, I get that you probably want to slap me as you read this, and I’m sorry.

I went downstairs, and I sat on the sofa, and my mum went off on one. She shouted. She said I was being selfish, she said I was stupid, she said I was sulking. And then she shouted at me to get a grip and stormed out of the room. She returned a while later, ready to go out for dinner, and wanted a plan about university. I learned that I’m not ready for that yet, I’m trying to sort my mind out, I really am. She shouted at me. She told me I either had to go back or leave. My dad made this big deal of stomping off to get in the car showing he couldn’t possibly stand to listen to my response. I tried to say to my mum that I was on the verge of a mental breakdown (if not kinda in the middle of one) and she kind of sighed in a tone that gave off the same sort of vibe as an eye roll. She dismissed my statement, ignored it. She has no idea how on the edge I am right now, I don’t think anybody does. My mind is such a mess. I’m struggling. People think I’m ok, I’ve even had comments on here where people think I’m getting it together because I’ve put stuff out in words… I think my brain just hides behind that. I think these words are its distress call.

This house is toxic to me. It’s toxic. The antidote is my dog. And he’s not here.

“Can I just ask you something?” My Fellow Third Wheel said to me on the phone the other say. When I said yes, he continued, “Why are you there?” After some confusion, he clarified himself, “Why are you at uni? You really don’t sound like you want to be there and you’re really unhappy there, so why are you doing this to yourself?” And I could no longer find a justifiable answer to that question, so I removed myself from that situation.

A lot of people reading this will ask me why I stay in this house with my family when it usually makes me so unhappy. It’s familiar. And I know how to deal with familiarity. When I can feel, it destroys my mental state and makes me feel inadequate and hate myself, but right now I can’t feel. I know that being surrounded by my family really isn’t helpful right now. My mum doesn’t understand, and is not helpful at all. The man I call dad hates my guts. Honestly, I can’t even exist right in his eyes I’m sure. I often feel like I can do no right by him, so I no longer try to. My brother doesn’t notice whether I’m here or not because he’s so wrapped up in his technology and stuff. But I don’t know where home is. I don’t know where I belong, and I am so lost and so empty that my brain is just craving familiarity, no matter how destructive or hurtful it is. I know how to deal with that destruction. I know how to handle it. The feelings from this will roll like water from a duck’s back. And the best place to start again, to reassemble yourself or even start looking for pieces, is from the place you know better than anywhere else.

It’s a place I don’t need to be, but at the same time a place I do need to be. I think.

I don’t know.

I’m so dead inside.

And I didn’t know what to do without my dog. So I watched the rugby and then downed A LOT of beer, which should start to hit some time right about… Now. I know it wasn’t the thing to do, but I didn’t know where else to turn. It was another familiarity. Around this time last year, when everything went wrong, I couldn’t face reality unless I was drunk. I couldn’t even get out of bed without downing a cider first. I’m ashamed of it. And I know it’s wrong. But it… It was all there was tonight.

The Inner Workings Of My Mind

Yesterday I finished re-reading one of my favourite books. It was a book that opened my eyes to a whole new level of understanding about the human mind the first time I read it and made me shout YES at the pages a few times, and it is a book that I hoped would provide answers to me in my deadened state when I re-ordered it a few days ago (It’s a non-fiction-but-kinda-fiction-because-she-made-up-the-cases-from-her-experiences book called The Skeleton Cupboard by the way).

As it did the first time I read it, it really helped me to evaluate myself. I’m not stupid. I don’t need a therapist to untangle everything and find the root of my issues. I have an analytical, logical mind which is fully capable of identifying the roots of its issues. I often found myself several steps ahead of the psychologist I am meant to see about the emotional impact of my physical health, and she often said what I already knew, but in a patronising, dumbed down way. I’m not one of those people who has no idea why I’m a mess. That’s not what I need help with. I know how an I know why. I am entangled in the roots of my issues, and what I need is a weed whacker. I need help with the coping, the fixing. That’s what I don’t know how to do, and that’s where the frustration lies.

I really don’t want to go back to university. I looked around myself last night and I just didn’t want to leave. I don’t want to carry on with this degree at all. I just don’t. I don’t know how. And when I jump back in to uni… Well, I was already drowning and breaking under the work and the pressure… And now with over a week’s worth of work to catch up on (on top of everything I already had to make up) I will be so out of my depth. I’m only going back tonight so that I can go and see my nurse tomorrow morning. A night alone. A night without my dog, who is the only living thing that I want to be around at the moment… A night alone with thoughts that I can’t handle… It’s daunting. I think the expectation from my family is that I will go back to uni. I have a three hour lab session tomorrow afternoon, and if I’m in London I can’t not attend it. If I miss another, the uni will probably push me to drop out again (even though I could just do the lab report from a set of model results). If I do the lab, then I will have a piece of coursework due in a week’s time. Mentally I can’t cope with that at the minute. I can’t think enough or focus enough to work. I can’t think enough or focus enough to function. Before this hospital admission, coursework was already breaking me. Now… In this mental state… NOPE.

I haven’t told any of my friends that I will be going back tonight. They don’t understand how I am right now. They’re far too optimistic and… Fantastically oblivious to what I’m going through. The way they act shows me they have no real appreciation for how broken I am either physically or mentally, which is not their fault at all. It isn’t plastered across my forehead, but some of them think they can relate when they really can’t and that makes things really difficult for me. Even after I explain that I can’t face talking or anything in my current state, they try to have normal conversation, which I look like I’m capable of, but at the minute I’m not.

Right now I feel like I have

“the appearance of a human being, but nothing more.”- Tanya Byron, The Skeleton Cupboard

I’m not saying this to be horrible or trying to be awkward. I want more than anything to be able to be there for my friends and support them, but their lives are so wrapped up in uni (like mine was a few weeks ago) and they project that stress onto me – they talk about it, they expect me to care about work and assignments and worry with them, to validate the way they feel so they aren’t alone in it. And I can’t right now. I have no interest in hearing about coursework or trying to help them find answers to the questions, and they cannot detach themselves from that stuff because they don’t have the perspective that my crappy health has given me (interestingly enough, their latest lab session seems to have been measuring insulin levels, which is kinda ironic). I’m not explaining it right because I sound like an ungrateful idiot. I just feel so disconnected and stupid when I’m around them. They are normal. They are happy, and in some cases not so happy and want me to help them fix that. I can’t cope with either of those things. It overwhelms me, just at the thought of being around a group of people or a friend who is happy to see me makes my brain all asdfghjkl. I can’t deal with my own dampened down emotion right now, and I don’t seem to be able to deal with anyone else’s either.

“In familiar places and with familiar people, I am feeling lost and overwhelmed” – Tanya Byron, The Skeleton Cupboard (Ok so this was a guy talking about the early stages of dementia, but I feel the words can be adapted to explain how I feel about life right now).

At the minute I’m home alone with my dog (who used me as a living pillow last night as he slept in my bed with me). I’m waiting for My Fellow Third Wheel to arrive, because even though he’s miles off the mark this time in terms of understanding what is going on in my brain, he understands more than most. He isn’t emotional. He’s super calm and rational and impossible to panic. He was going to visit me in hospital. but when he found out I was back in Kent he said he’d see me yesterday (but then he was busy so…). He has promised me a long hug, and he’s going to buy a load of food and we’re going to sit and watch films or The Grand Tour Episode 1 (which I’ve already seen but he hasn’t). He’s there. He’s there in a way other people aren’t. No emotion, no skipping over whatever I just said and trying to have a normal conversation which then kinda totally shows he hasn’t understood what I tried to tell him. He tries, and he gets it wrong sometimes, but I am getting it wrong every time because I’m stuck in this rut. He said we can not watch TV, that he will sit here and I can throw all my s**t at him and let’s hope some of it sticks (which I thought was a rather funny way of putting it).

He knows that what I don’t need right now is to be told I’m not broken. Why do people do that? You take a huge step and admit your vulnerability, and they throw it right back in your face, dismiss it like it can’t possibly exist and you’re an idiot, and tell you that you’re not broken, you’re ok, you’re strong, you’re a fighter, you‘ve got this… Like… Like you’re not allowed to break. Like you don’t know yourself. They tell you that you’ll get through it and then they dismiss it and are all so I went to the shops yesterday and got a sandwich for 10p how ridiculous is that?! Instead of offering you support when you so badly need it, they kid themselves that you’re fine without it, probably because they don’t know how to offer it. But telling someone they’re fine or they’ll be fine when they have never been further from it is not… Helpful. It’s what made me withdraw. I kept getting messages like that. I kept having conversations like that.

I don’t need to be forced back together into a functional human that is easier for people to look at. I need to disassemble myself fully in order to reassemble myself. And he knows I don’t talk. He knows I get lost in myself. And he knows where to find the parts of me that are left lost in my mind somewhere. He’s the kind of friend where we will both happily just sit in silence in each other’s company for hours. He’s happy to do that. So am I. We do our own thing but sat next to each other on the sofa, and just the company is reassuring. He is in no great rush to fix things. He knows it takes time. He knows that if he pushes me I’ll just break more, and I’ll stop replying to messages and avoid all contact with even him (one of the two humans I am currently communicating with, both of whom are chronically ill, one of whom – new hospital friend – is in and out of hospitals and nearly dies a lot too). He also knows that I don’t do this to be difficult.

(Now excuse me while I science). The frontal lobes of the brain are responsible for the things that make us human – logic, rational thought, our personality, motivation, speech production, judgement, emotion control, social behaviour, problem solving… basically “higher cognitive” functions – complex thoughts. The prefrontal cortex (behind your forehead) is a part of this area of the brain that is linked to thought processing and personality and… stuff. Now let me introduce you to the Limbic system. That’s pretty much everything in you that is innate, the stuff you can’t control – heart rate, emotion, memory formation, hunger, thirst, pain, blood pressure, arousal… I sometimes refer to the primitive animal inside my brain that is reactive and defensive and behaves like an instinctive animal… That part… That exists. It’s the limbic system (the link has a big scientifically worded explanation for anyone who cares about/understands what it says). It’s the part of you that does whatever has to be done to stay alive I guess, it’s the animal part of us. Sometimes when people are super traumatised emotionally (or when they get stuff like dementia/stroke/traumatic brain injury that physically impairs the functioning of their frontal lobes) their prefrontal cortex is just like SORRY NOPE. It can’t handle reality and thinking and processing that reality… So your brain just… Doesn’t. The bit of you that makes you human switches off, and your limbic system is left in control, with nothing to process or control the emotion or anything. We kind of revert to animal form, in a weird way of looking at it.

“my frontal cortex was shutting down. Soon I would only be limbic, running on raw emotion, and this was not a good place to be.” – Tanya Byron, The Skeleton Cupboard

This is what this book does. It reminds me of the logic that I have researched and understood in order to understand myself, and it walks me through my own mind opening doors and explaining why. The state I’m in makes no sense to me, but that’s probably because my prefrontal cortex is being an utter idiot. Knowing that, being reminded of how the brain can respond to huge emotional traumas (i.e. literally deciding not to human) it provided me with an explanation as to WHY the way I am feeling happened on a scientific level. And I like logic, I like being able to understand myself, so this was of some comfort. It helped. Only trouble is, I wasn’t running on raw emotion either. I mean right before I became emotionally dead, I was clearly totally limbic. I was in a constant state of panic, I was wired, I was shaking, all I could do was cry and panic and the emotions were overwhelming – fear, terror, despair, helplessness, hopelessness, wanting to fight, wanting to surrender, wanting to run, feeling caged… So many more feelings, most of which there aren’t even names for. Survival mode. That’s what it was. The animal was no longer caged, my limbic system was in control, I was in irrational, emotional, survival mode.

I felt so much all at once, with nothing to police those emotions or limit them, that when I listened to a wonderful human being die, my brain was like NOPE ASDFGHJKL QWERTYUIOP ASDFGHJKL ——–. And then I couldn’t think or feel or anything for days. I don’t know what happened there. I don’t know what my brain did with that one. I don’t understand how I’m slowly starting to be able to form half thoughts, but my emotions are still foetuses that refuse to mature or develop and are there but unseen – they could never survive or fend for themselves in my brain, and they don’t last for long when they do appear. That doesn’t make sense to me. Why are my emotions so far past their due date? Why can’t I feel stuff properly? Is that in itself a feeling? Why won’t it just all come back? Am I broken? Will I feel stuff again? Do I even want to think fully? Because when I think fully, I know I’ll melt down and go all limbic again. Because that’s what I do. I know myself, and hospitals and stuff like that just seem to overwhelm my prefrontal cortex a little – to the point that its logic deserts me. And it needs to process stuff before the rest of my brain will settle, even though each time I think anywhere near that stuff emotion just overrides logic all over again (there is very little of either right now).

See this. This is how I think. I don’t like not knowing things. I don’t like not knowing what is going on in my body or why it did it (seriously once I know scientifically and medically how I settle a little. Modern medicine tells us how, but we have no idea why. We know how disease occurs. Most of the time we don’t know why). I especially do not like not knowing myself, my own mind, the one thing that should make sense to me because… I am it.

“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

 

[…]

What’s wrong with me
Why not understand and see
I never saw
What you saw in me
Keep my eyes open
My lips sealed
My heart closed
And my ears peeled

” – MS MR, Hurricane

An Unwanted Reunion

I couldn’t stop sleeping. I felt sick. I was dizzy. I felt like death. My eyes wouldn’t stay open. My head felt weird. It ached, but not in a normal way. I just about made it upstairs, dropped my stuff onto my bed, and fell down on top of it all. I was dizzy but not dizzy – on the verge of unconsciousness. And I passed out as any level of consciousness I had been managing to cling to slipped away.

Inject. Pass out. Wake up. Inject. Pass out. Eventually I was delirious. And I couldn’t get up, I couldn’t move. My heart rate was HIGH. My muscles felt weird. Acidosis. Crap. Acidosis. No. Pass out. Wake up. Inject. Pass out. Consider options. Pass out before being able to form a full thought.

On went the cycle. Lose consciousness. Wake up delirious. Lose consciousness. Wake up. Drink. Lose consciousness. Wake up. Try to move one leg under the covers. Lose consciousness. Over and over and over.

Until I regained consciousness and knew I was on the edge of something disastrous. The level of acidic bodies in my blood was over 10 times the upper limit of normal. It had doubled.

I phoned my mum at 3am. She woke up. At first she was angry – angry that I was ill. She doesn’t understand the complexity of what I’m dealing with or the way I juggle my medication, so she criticised it. She told me what I’d been doing wasn’t good enough. She decided she could manage it, and pretty much demanded that she took control. And then I started vomiting, and the room was spinning, and I was laying in the bed as she packed stuff ready to drive me to London (she was going to grab some rest in my flat while I was at the hospital) when I lost the ability to move a muscle. She’d been telling me I couldn’t possibly be as unwell as I was saying I was, because my breathing was too slow. In that moment, breathing was way too much effort. I apparently became hysterical at the thought of going to hospital, sobbing and getting into a (mild for me) panic (I am not fully feeling, this was a subdued response from me, with not a lot of feeling behind it, but it was enough to induce tears). But I relented. At 5am, for the second time in two weeks, an ambulance was called for me.

The first responder paramedic that showed up was from a different NHS trust. He was really friendly, and he was just finishing his shift. He told me I was the first genuinely sick person he’d been called to throughout the entire night. He was kind and fatherly and he sat on the bed and did all he could. It didn’t take him long to call for backup. He stated the category of the call and then added, “Urgently please. This patient is… Very sick.”

There were no free crews. He didn’t want to wait and tried to find a way to get me into the back of his ambulance car and take me to the slightly further away hospital in Kent where my share is sort of cared with my main consultant for this hiccup in London. But my blood pressure was dropping, as was my level consciousness. I was drifting away before his eyes. He kept rubbing my foot and saying my name and I had less and less free energy to use to respond to him. My dog had enough energy for me and him, and wandered around the bedroom saying hello. He got many hugs from various paramedics, and seemed very pleased with himself.

My mum was stress vomiting every few minutes. She got angry at me. She shouted about my management of everything and then she acknowledged that it was not the right time and calmed before occasionally not being able to hold back her thoughts any more. She did however tell the paramedics that I have PTSD due to stuff that happened in hospitals, which was a first. Usually she’s very dismissive of it and doesn’t understand what a big deal it is, and says that in giving it a label I started to make so much more of a deal about it. So this… Mattered.

We ended up with four paramedics in total. The first responder and an older lady lifted me into a chair thing, and a male paramedic wrapped a blanket around me and sort of hugged me in the process. They wheeled me through my parents’ house and carried me down the stairs and out to the ambulance. My GCS (glasgow coma score/scale) dropped in front of them from 15 (fully conscious) to 10 (kinda not able to function), as did my blood pressure, which plateaued at 80/55. My heart rate was 130 laying there out of it, I was shutting down, I was cold. My kidneys gave up functioning.

By 7am, my morning had already involved a blue light ambulance ride, a battle to cannulate me, a paramedic lady holding my hand while I lay in resus with a reduced level of consciousness that rendered me unable to talk or communicate, but apparently still able to cry my eyes out. My mum had annoyed the paramedics, and they made it known. They spoke to her like they were disciplining a child.

They hooked me up to IVs and I began to improve. I quite quickly came around. And the crying intensified then. The crying was joined by shaking. I was in the scene from my nightmares. I was in the hospital that triggered my PTSD. It was in that building, under the care of my paediatrician (whose face I still see in my nightmares), that the very first events I ever had flashbacks to occurred. If he were anyone other than a doctor it would be emotional abuse, neglect. For a doctor it is malpractice, it was cruel. It killed me. He killed me. And I sat in front of him and told him that I see his face in my nightmares, and one time he told me he’d laid awake thinking of me too. He’d written a note pinned to my A&E file that he is to be notified if ever I am admitted. He instructed people not to treat me unless I was essentially… Dead. I was his personal challenge, a puzzle to solve. And he was far too emotionally involved. So I was freaking out as people found that bit of paper. I was freaking out because of where I was. Not fully able to freak out, because I wasn’t fully able to feel. It was more a superficial panic, it didn’t spread right to my core, it sat on the surface. It was mild. But I shook and I cried and I lost the ability to talk. And over and over I asked to leave.

My mum slept on the rail of the trolley in resus, using my big purple butterfly blanket as a pillow. I put my arm around her as she slept and played with her hair fondly, gently, afraid to do so when she was awake. I felt this urge to protect her in her vulnerable state. And she woke, momentarily exasperated at it all, at me… And then just exhausted. That’s what I do to her. I break her.

Then they moved me round to majors. For the first time in years I was well enough to be stepped down from the resuscitation unit to majors. And they put me in a corner by the window in what used to be the clinical decision’s unit. And I woke up, looked out of the window. And there he was. In his office. The monster in my head. Out in the real world.

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Above and to the left of the tryingtogetalife.wordpress.com is the back of his head. Above that (so above his computer) is a drawing of a sunset, and below that a sketch of two people sailing. Both were drawn by me throughout the couple of years that I lived in this hospital. They are the only two neatly blue-tacked to the wall instead of pinned to his noticeboard of paperwork. Did he care? He must be reminded of me every day. 
I watched him sit there. I watched him, and I shook. And I prayed that he wouldn’t turn around, but I wasn’t fully feeling. I wasn’t able to freak out, and so I stared. And I got angry. Because how is it fair that after everything he did to me, everything he put me through – all the cruelty and the mistakes that he made that almost killed me and occasionally made me long for death unlike anything else ever had… How is it fair that after all that, he gets to sit in this building like normal and carry on like nothing ever happened? How is it fair that he can sit in that same old chair and casually eat a sandwich when I have spent hours shaking and crying in that building because of the things he did to me there. How is it fair? I concluded that I wanted him to hurt as much as he hurt me. I wanted his soul to die as he had killed mine. And I wanted to talk to him at the same time; I wanted to email him and arrange to meet so I might get some closure. He played god with my life and had no idea the damage he was doing.

He cared. Far too much. He crossed a line, but he was the boss. He’d sit and talk with me for an hour or so every day he was there. He treated me like a puzzle, a personal challenge, but he let me in. I learnt a lot about him. He told me about his childhood and stuff, and loads of anecdotes, until I trusted him. Until I told him about my own childhood. Until I reeled off my own anecdotes. And he supported me. He was there. And then he almost killed me. He threw the trust away. He saved my life a few times. He was so caring when I was found unconscious that the crash team thought he was my dad… But he did horrific, unspeakable things. He put me through hell. He wasn’t good at showing he cared, and so when I saw those pictures, it made me stop. Did he care? Why did he put them right where he had to look at them every day? To remember me? Because every time he saw those pictures he had to remember me.  This is the closest I had been to him in years. We weren’t face to face, but we were face to… window?

I messaged My Fellow Third Wheel and my hospital friend and Uni Babe. My Fellow Third Wheel was not impressed with my old paediatrician. He called him a four letter word beginning with a c. My hospital friend said she couldn’t imagine how stressed I was. Uni Babe responded with a series of swear words, a statement that it was awful for my mental health and I had to get moved away from that area where I could see him, and shortly after I got a couple of messages from WR Uni Friend and Uni Pal.

“Hope you’re doing ok petal. Just letting you know I’m still around for ya. Don’t feel the need to reply, just letting you know I think of you regularly.” – Uni Pal

“Hey superhero just wanted to let you know we’re all missing you and hope things aren’t too sh**y right now. There’s definitely a sense of something missing without you here, but focus on feeling better xx”

“Also don’t feel any pressure to respond if you’re not feeling up to it, we know you’re not feeling great right now but we just want you to know we’re still here for you x” – WR Uni Friend

“You were in resus this morning, are you sure that’s a good idea? Is there a different hospital you can go to? This is your life in the balance. You may not care now but you will later, and we all care too xx” – Uni Babe

I mean… They’re trying so hard bless them. They don’t understand me at all, and yet they’ve figured out how to say… The right thing, I guess? When I was incapable of all feeling, this was useless, but now that I’m starting to feel very suppressed, fractional proportions of my former emotions, words like this mean something.

And then suddenly I was like a caged animal. I was far too close to him. I kept asking for a self discharge form but they freaked. They wanted me to complete the IVs. They wanted me to keep the line in. They wanted to send me up to a ward. But I felt better. I explained to my nurse that I was in the hospital that first triggered my PTSD, staring at the office of the man who had almost abused me in a way. He immediately shut the curtains beside me so I couldn’t see. He stood next to me, this freakishly attractive human being with hypnotising, piercing brown eyes, and he said, “Look, I’m here. We’re here. I’m here. You’re safe.”

And then he tried to make me comfortable and talk me down. He told me I had to stay for the IV to finish, and then I needed to go up to a ward. I asked him for a self discharge form. It was the millionth time I had asked. Nobody would give me the form.

I said you guys need the bed.

And he was all, Don’t think about that. You’re a patient. You’re here for a reason. You’re very sick. but when I looked at my blood results, they were at that stage normal for me. In fact, they were good for me, hovering just outside of normal parameters.

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I removed the gown that they forced me to wear over my clothes, and all the ECG stickers all over me, and made it into a patient. The things I do when I’m bored…
After I’d been laid there for 7 hours without seeing a doctor (other than the one who admitted me), which was quite frankly A JOKE, a doctor appeared (this is another reason why I avoid this hospital at all costs and hadn’t been here for two years. The negligence that has nearly killed me so many times. It’s old. It’s a stagnant swamp of nightmares. Unfortunately, it’s closest to my family’s house, so it’s where ambulances take me). He didn’t want me to leave. He admitted there had been multiple screw ups in my care and I’d been meant to be seen much much sooner. I’d had enough. My third IV was finished and I’d basically unhooked myself from it. I needed out. I was going crazy, but not fully feeling. It’s weird. It was rippling away inside of me but the tidal wave never broke. It was never a fully fledged emotion – more a deadened, half-hearted version of what should have been. But anyway, I demanded a self discharge form, which meant I signed a disclaimer stating that I was leaving against medical advice.

I thought this would make everyone cross, but the lovely male nurse understood. He tried to talk me into staying, he really did. But he was so kind and calm about it. He said if I got worse again I had to go straight back without hesitation. He wasn’t annoyed at all.

As I walked out, my specialist community nurse from London called me. I told her where I was, and what had happened.

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I didn’t have any shoes, because the paramedics just scooped me up in my fluffy socks as I was. So I got very cold, wet feet walking to the car because I had to walk through puddles and stuff (it was raining. A lot)
I arranged to call my nurse back later. We ended up arranging to meet on Thursday. Yes, after months of cancelling all appointments, I’ve finally made one (I cancelled most of them for the next few months in advance). We spoke about stuff and I had a few moments of saying I couldn’t do it any more, and she told me that we’ll get there. She said it was a shame that this admission had broken me but it was also a good thing because I was finally letting them work with me. She said she was proud of me, because six months ago I would not have made that phone call. I pointed out that six weeks ago I wouldn’t have made that phone call. She laughed. We talked about serious medical junk. We talked about a letter for uni (if I decide to carry on). And then she said she’s spoken to Dr GiveUp (y’know, the guy who just gave up on me in February, I’ve probably referred to him as something else but hey) and he’s really pleased that I opened up to her, and is keen to arrange a meeting between the three of us so that I can talk to him too. I didn’t open up. I broke down. And I kept my cards very close to my chest. I don’t talk. I don’t know how. But I’ve not let these guys have any input since they basically gave up on me, so I think the occasion was rather momentous.

Anyway, my little brother went and collected a parcel that was delivered to me, and it contained additional copies of two of my favourite books,

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Love these books. 

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This guy I made sums up my mood for today (although I don’t have a full on mood, it’s so weird, like my emotions are stunned or their growth is stunted and they never fully developed). Although at least I have a mood now, which is kind of refreshing.