;

“The woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.”

– R. Frost, “Stopping by Woods on a Snowy Evening

In my mind, this post stopped at the end of that quote. In reality, I also almost stopped recently – wrote a final thank you card pleading for forgiveness, and a list of contacts, stuck both tear stained articles on the wall at the end of my bed, and prepared to curl into the darkness of whatever waited beyond daylight and moonlight. I could not see the wood for the trees. There comes a point when you are so tired – tired of hurting (physically and mentally), of thinking, of sinking, of almost dying, of being, that all you want is a break. And when life won’t give you that break, when it sees your white flag and doesn’t cease its fire… Your mind, the lone and weary soldier, pulls out the revolver that has until that point just been a comforting presence in your metaphorical waistband and decides that it has no option but to pull the trigger whilst the barrel is aimed at its own skull. The unpleasantness cannot take you alive. The pain is not one you can endure.

I am in a great deal of physical pain after my latest heart surgery, taking morphine and tramadol just to try and sleep through nerve pain caused by scar tissue sitting on top of a nerve. But my mind… nothing could numb that.

My revolver was medication. Medication that sat there, sparing me from further unpleasantness when I took it at the prescribed dose, but that any higher dose was also my revolver – deadly. Quick. Freeing. The knowledge of that was enough of a comfort to keep me going. There was a failsafe. I didn’t have to hurt forever. Just one more day. And then the next day, just one more – and while I couldn’t imagine it, I knew there would be a day where survival wasn’t a task, but something I didn’t have to think about. And then came the day I wrote that card, and made that list, and could not stop the tears.

I have been saved all too often lately by words. Words that came from places I didn’t expect them to, from people who understood me in ways I wished those closest to me could. First, my personal tutor at university (who I also almost died on last week, because my heart is an ARSE) – with one simple sentence about PTSD that took away the stigma my mind sharpened and used against itself, and completely transformed the way I saw myself. I used the support available for me. I asked for help I had been turning down for years. Then, the other night, a dear friend, amazing human, and creative soul behind this blog, who accidentally saved my life with words that found me in a place that nobody else (myself included) could.

And then I remembered the poem that begins this post.

The emptiness of oblivion is comforting, tempting, enchanting, but not a destination I am yet supposed to visit. I owe it to the humans whose kindness and understanding have been transformative forces in recent weeks, to move beyond its temptation, to carry on going wherever I’m going. Those people made me realise that feeling like this is not weak, nothing to be ashamed of, but understandable, excusable, human… and survivable, somehow. I made no promises to them anywhere outside of my mind, but I cannot betray them. I made promises to myself – to get this degree, to do something, to raise money to help fund research so that other people’s bodies might not drive them to the hell I have been to/through. And thanks to people (some of whom I have never met) I see myself as someone worth keeping promises for. I have a long long way to go before I get rest or respite of any sort, physical or mental, and I have to accept that, grit my teeth, turn off, and keep walking – sobbing and screaming and writhing in pain if that’s what it takes (also things that before I took as signs of my own weakness, and now acknowledge as a strong person doing anything and everything they have to but give in). It doesn’t have to be easy, and I know it won’t be. My situation is tough, it’s even recently been described to me as “crap” by somebody I expected to brush it aside. I’m allowed to find it tough. I’m allowed to hurt so much I can’t keep going. It’s ok to cry myself to sleep, to want to never ever wake up again. But these thoughts I keep inside are promises I have to keep. I have an unimaginable amount of miles to go before I am allowed sleep.

The way out of this is not six feet under, or wherever the wind may take my ashes. It’s through.

Agonisingly, impossibly, soul destroyingly (yes I know destroyingly isn’t a word)

There is

No way but through.

I sat myself down and had a thought at myself (if that’s even a thing).

When you can’t run, walk. When you can’t walk, stumble. When you can’t stumble, crawl. When you can’t crawl, drag yourself. When you can’t drag yourself, roll. When you can’t roll, just hold on. When you can’t hold on, reach out. When you can’t reach out, scream. When you can’t scream, talk. When you can’t talk, whisper. When you can’t whisper, blog. If you have to fire your revolver, fire it into the sky. And through it all, play Bastille. It’s colder six feet under. It’s lonelier when your ashes have been dispersed by the wind. There will be far more tears if you let go, the difference is, they won’t be your own. There is no way to live this life, or to be a spectator to it, that does not involve hurting. And no form of pain is a choice or a flaw – it’s a limbic system and nocioceptors (hello inner biomed student) – unconscious, understandable, protective, logical measures. Don’t expect to live and not hurt. Don’t expect to hurt and not still find reasons to smile. Pain may right now be all you feel, but even if it is ever present, it is not all that waits.

Finally, I have been taught that it’s ok not to be ok. That’s the most valuable thing any lecturer has taught me, the most precious gift a friend has ever given me (thank you blogging human, you know who you are). Something I hope not to let go of. Something I will someday pass on.

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When Does It Stop?

The past can destroy the future in ways that we don’t really understand. The seeds planted in our minds by events that we live through can shatter our souls with the roots they spread as they grow, wrap around us, entangle us, enslave us… I guess I’m in the grip of such a plant. It took the edge off of a great day, and it is probably about to make me sound super ungrateful for the fact that I’m alive and where I am right now.

I was pretty much left alone all day. I went from having my blood checked hourly to not at all. I was eventually disconnected from all IVs, and in the evening my femoral line was removed without my bloods having been re-checked first to see what had gone on during the day. Slightly concerning, but I didn’t care. I just wanted out. I just. Wanted. Out. I’d got myself into the sort of situation where my mind was in such a mess that I couldn’t even imagine how things would ever be normal again. I couldn’t believe that the flashbacks would stop being so frequent, that I would ever feel anything other than the fear, that the memories would never stop being triggered. I was sat there freaking out more and more, on the verge of tears, when something made me message My Fellow Third Wheel. He said I could call him, and after being on the phone for a few minutes everything felt ok. We talked for an hour and a half, I sent him a load of puppy pictures, and we discussed his new job and stuff. I’ve learned a lot about the power of friends lately, but that’s for another post.

I was slightly concerned at the lack of any heart tablets I’ve had over the past few days, and had started to experience a very odd sensation which would involve me falling into an involuntary sleep. I kept getting brief episodes of palpitations, but I was too scared to mention it and also… Didn’t care. Fear warps things. I just wanted to do whatever I had to do to go home. And that meant staying quiet, injecting a heck of a lot more medication when nobody was about, and hoping that they thought everything was fine. I kept experiencing waves of dizziness accompanied by the weirdness, and walking to the bathroom was wiping me out. I noticed that the skin around my lower legs was starting to feel tight- hello oedema.

My old sixth form friend turned up with chips in the evening just as my femoral line was being removed. I laid and ate chips as I waited to be allowed to leave. My nurse told me not to tell her when I’d left, just to wait around for 20 minutes and then clear off more or less. I wanted out. I felt like dirt. I burrowed deeper into the awful feeling that surrounded me.

So, less than 24 hours after I’d been a catheterised, unable to walk, attached to multiple IVs via multiple lines kinda human being dependent on drugs and machines for my survival, I found myself wearing WR Uni Friend’s jogging bottoms, wrapped in a hospital blanket in the pouring rain, waiting for a bus in Whitechapel at the bus stop I stood at the day before my 20th birthday.

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Running away from the scene of a nightmare
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FREEDOM

The friend I call “Batman” was still with me, Bastille was playing through one headphone, and nobody on the bus gave me a seat – and it was so amazing to blend in and be ignored and be treated like everyone else. I felt like I was going to pass out. I messaged the group chat that I’d set up between a few uni friends (more on the significance of this in another post too) and asked if any of them minded sitting with me so that I wouldn’t be alone, just in case my body lost consciousness as I genuinely felt it might.

Uni Babe left wherever she was immediately and stood outside my building waiting in the rain for my arrival. Portsmouth Uni Friend joined us later with a panini she’d just bought, and they both sat with me for ages. After what must have been well over an hour, Portsmouth Uni Friend had to leave, and I was inspired to replicate her panini purchase, so after I struggled to lift my own bodyweight out of the chair, Uni Babe and I slowly walked along to Costa (first time I’ve been in the one near uni) to satisfy my craving (and yes, I was still wrapped in a hospital blanket) while I downloaded a genius app (which ties in with the whole friend thing I’m going to post about).

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Peppermint hot chocolate was a REVELATION. Yes, I am apparently now the sort of person that posts pictures of their food, but hey, this was a huge celebration.

They had Christmas cups already. I remember this time last year sitting in the hospital cafe (which is part of the same chain) with Italian Uni Friend and Portsmouth Uni Friend almost a year ago to the date, and the barista giving me one of every single paper cup design because I mentioned that they were pretty awesome.

We returned to my accommodation and my stomach DROPPED when I saw this

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NOPE

An ambulance had been called for someone in my accommodation (the fresher who was having a worst first year than me when she sat with Uni Pal and I the other day and poured her heart out at us). Uni Babe was awesome about it. I freaked a little purely at its presence. I couldn’t deal with it (I mean there is an ambulance station behind my building so the sight of an ambulance is not uncommon, but right then for some reason my reaction was pathetic). I got so angry, so angry at my mind for being so stupid and illogical in response to the sight of an ambulance, for being shaken and scared and triggering an adrenaline rush and shaking just at the sight of a vehicle. It was looking backwards again and I was trying so hard to move forwards. Uni Babe understands more than a lot of people do. She didn’t judge, she actually helped a little. But I felt insane. I feel insane.

Oh my my my my

Now I can almost taste it, taste it

[…]

But why, just ’cause we’re a little older

Do I relive it, relive it all?

Oh, I’m pedalling backwards

Even if I’m pedalling alone

Can’t help it

I relive it, I relive it all

 

It’s 4am here comes the fear

I’m not prepared yet

[…]

 

I let myself bathe in the past for way, way, way too long” – Bastille, Winter Of Our Youth

I feel suffocated by this fear and these traumas that I cannot stop reliving, and I’d do anything, anything to escape it. In that minute I considered running out into the traffic, just to get rid of the monster in my head, just to take away the stupid, stupid part of me that isn’t me that reigns supreme and will not leave. I am already living under the cloud of dread because I know I have to go back, and I know that I’m still playing Russian Roulette (their words not mine), and honestly right now I’m a little emotionally exhausted at just keep almost dying over and over and over. It’s so emotionally draining. So. Draining.

After an initial reluctance, my mum picked me up after work. I returned to Kent. My dog was thrilled to see me. My little brother and nephew were apathetic. They didn’t even know I’d been in hospital. Most people don’t. Normality resumes now. It has to. That’s just the way life is. I am riding a high at my freedom, and everything feels surreal and great and I feel invincible and untouchable and so relieved. In a few days, the Grim Reaper’s near win will sink in. Reality will hit me like a train and I will be left… Dead inside, I guess. Shaken. Wounded. Broken. Reeling. I know this because I know myself and I’ve been here before. I know this because I’m already using university work to plug a wound that is eventually going to bleed out and leave me empty. It’s what I did all of last year.

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The few physiology notes I’ve written up,currently laid out on my bed ready to be copied out again in preparation for the test we have the week after next (I have one week of neatly written out notes… Should probably make up the other 5 now…)

“Snakes are biting at my heels

The worries that refuse to let us go

I’ve been kicking them away,

Been hoping not to let them take control

 

Ooh I’m not ready,

Drink to escape their bites

Show me distraction 

Even for just one night

‘Cause it’s easier to bury 

My head in the sand sometimes

Yes, it’s easier to bury

My head in the sand sometimes

And I know, I know, I know

It’s not the right way to go

But I pray for the ground to swallow me whole

[…]

 

‘Cause I know, ’cause I know, ’cause I know life is simple when

I can just ignore it all

[…]

 

If I’m not ready 

Snakes will consume me whole

[…]

But it’s easier to bury my head in the sand sometimes

[…]” – Bastille, Snakes

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But this guy is currently asleep next to my bed, and nothing grounds me after a flashback/nightmare (of which there will be a significantly increased frequency for at least a few days after a hospital admission) like the feel of his fur and the gentle nudge of his nose if I hyperventilate and cry in my sleep. He genuinely helps me more than any therapist. I love him to the moon and back. This dog right here is my everything. He’s pretty much how I carry on. 

No way but through.

 

I Need You Guys To Understand What They Can’t

“Welcome to the inner workings of my mind 

So dark and foul I can’t disguise

Can’t disguise.

Nights like this

I become afraid of the darkness in my heart

Hurricane.” – MS MR, Hurricane

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Feeling Is Mutual (My Favourite Nurse EVER)

“Hello young lady, well don’t you look better than you did the other night!”

“I don’t really remember the other night. Was I that unwell?”

“You don’t want to know”

“That bad?”

“Well you were there, you saw her.” (To my fellow third wheel) “You were very very poorly. Very poorly. Honestly you look so, so much better.”

“I’ve spent the last few hours playing cards so…”

“Making up for lost time?”

“I like playing cards I guess”

“Honestly, you look a hundred times better”

And the banter begins… (My bed is right in front of the nurses station and doctors offices). 

To put this conversation into perspective, a couple of hours earlier I was told I am too unwell to move to a ward and too unstable to transfer to London. And this lovely older nurse who apparently was there when I arrived in the ICU unconscious and out of it just sat there in awe at how well I look in comparison to the last time she saw me. That alarmed me rather a lot.

I was seen earlier by the nicest consultant ever, who was on call on the night I came in and actually understood the complexity of my case. She rewrote the protocols for typical treatment in order to prevent me deteriorating as far as I did earlier today and yesterday. She was absolutely amazing. She listened to everything, she understood everything, she’d worked with one of the consultants I had dealt with before… I was going to be moved to a ward which made me so excited, but then I deteriorated and they said I had to stay in the ICU and I freaked out a little (ok I nearly cried but my fellow third wheel was there again). If I’m still here on Monday, which this consultant pretty much thinks I will be, then they are going to try and stabilise me long enough to potentially transfer me to London. I don’t know why, but suddenly I was terrified. The terror kicked in and I felt myself on the edge of a freak out and… The presence of my fellow third wheel completely calmed me. He has been great. 

My fellow third wheel turned up today with multiple changes of clothes in his bag so that if I got worse he could just sleep in the hospital. The lovebirds as always left after about twenty minutes, but I felt bad even for that. My fellow third wheel is so committed to staying with me that he has started referring to us as “we.”

We saw a lovely consultant earlier.”

“If we get moved to London.” He’s staying with me pretty much no matter what. I’ve no idea what I did to deserve such an amazing and loyal friend. We sat for hours playing cards.

Sixth form friend almost lost his job asking his boss to let him miss his shift so he can stay in Norfolk. The lovebirds are only here for half an hour or so a day which is so lovely but I feel so guilty. I even messaged his mum to persuade her to talk him out of it, and she sent me messages that made me feel all the feels.

A couple of hours into the shift, awesome banter nurse took over my care because she’s amazing. And then this happened. She just got it.

“Do you sleep well?”

“Well that depends…”

“On what?”

“On how freaked out I am at being in a hospital…” I pause awkwardly

“Your PTSD. I know, I was in the army for…” And she tells me about the horrific time she had. She completely understands it. I can’t explain it properly, the connection we made. The way we discussed the triggers and how relieved I was to finally speak to someone whose response was,

“I’ve suffered with it myself, I know exactly what you’re going through.” And they actually did.

“People think you just remember but you don’t, you relive it all over again and you react in exactly the same way.” I say.

“Yep, yep…” She nods her head as she hooks up my IV, following emergency protocol yet again because my body is a poop.

“And it’s the tiny things like smells and sounds…”

She asks what can make it better, understands how much her attitude will influence my emotional state.

“How did you sleep last night?”

I admit that in several occasions (once ever hour or so) during the night, I woke up drenched in sweat and shaking. She nods. She gets it. She asks if I want something to help me sleep. I say no thanks and she says I can have something written up in case I need it just to take the edge off. She says if I need her she will be right there. I’m not explaining it right because when I read back through this her awesomeness doesn’t astound me. She’s abrupt and hilarious and you can tell she’s ex-army. I love her. Finally someone understands it.

She comes back a while later to take blood again (as occurs hourly) and we talk about uni and she seems pretty impressed that I’m managing that. And then we talk about my health and she seems to be pretty blown away at how on earth I am still alive.

“You are one very lucky girl”

We talk about previous hospital experiences vaguely 

“You have really been through it haven’t you? And you’ve dealt with it remarkably well”

“No I haven’t, I’m a mess.” It’s left me an emotional wreck with PTSD. 

The banter resumes. There is even banter about how messed up I am, except she protests about my use of the word defective and tells me I am blameless. She gets visibly annoyed at the words and experiences that have made me believe otherwise. She tells me I am very lucky to be alive. I can talk to her about everything and anything. She is beyond the level of uni dad. She’s amazing. My favourite nurse ever. She genuinely is just… Her existence is the best medicine I have ever encountered. 

My fellow third wheel and I hug the air every time she leaves the cubicle. Even he has made several comments of “You are going to have the best time.” I’ve asked my fellow third wheel to buy me a thank you card to give to her (and another general for everyone else here). She’s. Seriously… 

I mean honestly, you can’t possibly understand how amazing this nurse is. Medical staff terrify me and I cannot even explain how… Momentous this is.

In the middle of this amazing mess I also felt bad that everyone got in a flap because one of my IVs just ran out and they couldn’t find any more of it on the entire ICU (yes, my body has been this greedy). Eventually awesome nurse returned with enough to fuel an army (or, as she pointed out, me for one night).

As she took blood again she shook her head and said “You are just brill.” In a tone of sort of disbelief. The feeling is mutual.

Anyway, they are letting my fellow third wheel stay here as long as he likes, and we feel like playing cards, so bye!

  

Here To Stay?

Since the events of yesterday something has changed. Something is there where there wasn’t before – an anger. However, this isn’t the usual fleeting flash of emotion that soon simmers away to nothing, this is a(n uncharacteristically) stagnating, lingering state (of almost… fury) that does far more damage to the mind that stores it (unfortunately mine) than it ever could to the people at whom it is generated, and who brought it into fruition. It is raw and ugly and unmanageable, but it is the only thing I am capable of feeling; on the occasions when it briefly wanders elsewhere, I feel nothing in its place. I am numb. I am emotionally exhausted. And beyond fighting any more.

I see no point in discussing the conversation that started this, the frustration and hopelessness that brewed to this anger at the unhelpful way I was spoken to, the way it was made perfectly clear to me that my words did not matter… The way that my involvement and any power over my own care were suddenly both things I could only dream about, thanks to the words of somebody who knew (but clearly did not understand the ways in which, or particularly care) that this would be a major trigger for my PTSD, because I had explained it to her. She made me feel like any future failings of my body were entirely my fault. She refused to shift her advice and my heart splintered before her. She didn’t care. She knew better. I hold her fully responsible if this doesn’t work, and yet I know she will blame me. There should be no blame. Only help.

I have never cried like I did after that. I try to think forward to who I might be able to turn to instead but she has turned my  mind against them all, it is scared to meet the same resistance. And then the anger kicks in, in place of the hopelessness. My heart swells with it and forces it through all of me seemingly in place of oxygen, because there is an almost physical aching that pools briefly within me before dispersing. Anger is an ugly emotion I am not proud to display, and yet today I cannot shake it. Today, it is ever present, and it has to be, because it is fuelling me. Without it, I am the empty, beaten shell that I was last night.

I stayed up long after my family went to bed. In fact, I never went to bed. I drank beer to dampen the flames of despair engulfing every thought, in an attempt to salvage myself from the wreckage that is forming around the skeleton of the brain functions I need to survive (see, I am definitely Icarus. Stupid. But I think I earned it). I watched Family Guy. I fell asleep, eventually, with my dog curled up on me (since I got home he refuses to leave me at all… Again… But that’s another story.)… Once asleep I have a vivid nightmare where I am back on a children’s ward, and a doctor sits on me to put medication through a cannula in my foot without my consent (the cannula isn’t in the vein, because she’s already tried to flush it, but she continues anyway). I tell her no and shout for the nurse stood right beside me, but nothing happens, and the doctor pins me down and I fight and fight.

There are a series of recurring nightmares in the library that PTSD has built for me. Last night it started with this one, a snippet of the time I was legally assaulted by a doctor as a young(ish) teenager. She pushed 10ml very quickly through a cannula that wasn’t in a vein despite my protests, insisting I had lied because she never missed veins, and inducing a ridiculous level of pain and a huge lump on my foot in the process. I then bleed everywhere as I ran painfully out of the room, and couldn’t wear socks or shoes or walk properly for a significant portion of the day (which isn’t one of the nastiest or worst experiences, but induces the same panic, fear, and hurt as it did when it first occurred each time it is relived, and leaves me with the same sense of vulnerability afterwards. Wow, when I write it out, it sounds so pathetic).

I wake with a cold wet thing on my nose, and open my eyes to find myself staring into a pair of big brown labrador eyes – we are nose to nose. I hear the thump thump of his tail. He knows. He is used to this. There are tears on my cheeks because these dreams make me cry even in my sleep, even this mild one where the terror is nowhere near normal. I am shaking. I probably kicked him off of me in my sleep, but he stands over me now, and I know he will have nudged me patiently until I woke. He worms his way under my arm and nuzzles into my neck. He puts his paw on my shaking hand. I burrow my face into his fur and cry. When I loosen my grip on him and calm down, he nudges my head up and licks the tears from my cheek, stares into my eyes for what feels like an eternity, and leans back into me, gently nudging my chin until I let him snuggle back under my neck.

This happened multiple times, and each time I turned the TV back on and tried not to let my mind drift to the events of yesterday or the events of paediatric wards (some of the medical treatment I received was disgusting and extremely damaging, to the extent that I can’t talk about a lot of it but could take out a few law suits. One time a children’s hospital messed up and I ended up on a ventilator as a result, then had to have emergency surgery, but they didn’t have time to wait for a general anaesthetic, so they did it while I was awake which would have been ok but the numbing thing wore off because it took a lot longer than they thought and for a few awful seconds I could feel every snip and pull and movement and feel my own blood pooling against my skin… Not to mention bullying from staff, bitterness directed towards me in one hospital because of the protectiveness of my consultant, bitching sessions nurses would hold with me about other members of staff and even other patients and parents which made me feel insecure and meant that other staff members tried to blackmail me into telling them who had said what… Ok, this is not meant to be a post about my PTSD. Oops).

I hadn’t had so many nightmares in one night for ages, but the thing about PTSD is that they don’t stop when you wake up. Flashbacks peppered the periods in-between sleep, but they aren’t like dreams… They are like reliving it all over again. My brain doesn’t acknowledge that they are just memories, it can see and hear and smell and it responds in exactly the same way it did the first time, with the same terror… A fight or flight response.  And I know why it was suddenly so much more frequent. Because of yesterday. Because yesterday refreshed the fear of being out of control in hospitals again, of people messing with my life who seem to have no regard for it. So I drank beer. More than I should have. I didn’t know what else to do. I clung to my dog for dear life, and each time I looked at him he was focussed entirely on me. Can dogs worry? If they can, mine did. There was definitely concern in his eyes.

The final (sort of) nightmare was waking this morning to find my mother stood in front of the sofa I had fallen asleep sitting on (thankfully my dog jumped off at the sound of her voice or I’d have been told off for letting him onto the sofa), saying, “We’re out! And Dave’s resigned.” I somehow knew that by we she meant the UK; that by out, she meant out of the EU, and that she was talking about Dave the prime minister (as he is known in our household), not our neighbour. I’m not sure what I expected to happen, but I was too exhausted to have any emotional response. I had barely managed to sleep, I didn’t really have any idea how much time had passed, just that I needed more sleep. My dog curled up on my feet, I explained to him some politics, and then we both fell asleep together again.

Today I finally went back to see next door’s puppy. He is no longer a puppy, more a small giraffe (seriously, he is all legs). He flew at me peeing himself and he was so gangly he couldn’t control all his limbs as he charged at me. It was so cute and hilarious and I had so many cuddles and it was amazing (except maybe the pee, that was touching because hey he was happy enough to pee but… It was pee).

To distract myself I tried to come up with a name for the clothing company I am planning on starting (I’m serious about selling t-shirts over the summer, London living isn’t cheap, service dog training and stuff won’t be cheap when I eventually get a puppy, and I don’t want to ask anyone else for financial aid). I tried to claw at normality. But eventually my day deteriorated into having a labrador permanently glued to my side/ asleep on my feet/ asleep on my lap, sleeping a lot, ordering takeaway, and seeking out a cider.

Whatever this post was, you will be relieved to learn that it is over now. I guess this all needed to be let out, so thanks for putting up with it. The blogging community is awesome, thanks to all of you who have liked and commented (ever, but) especially over the last few days. It means more than you’ll ever know and I genuinely can’t thank you enough. 

 

Afterthought:

I talked about my PTSD. Whaaaaaaat. I don’t normally do that in any sort of detail at all.

Why.

Did I.

Do that?

Wings of Wax, Wood, & Steel

“Look who’s digging their own grave | That is what they all say | You’ll drink yourself to death…

Living beyond your years | Acting out all their fears | You feel it in your chest…

Standing on the cliff face | Highest fall you’ll ever face | It scares me half to death,

Look out to the future, but it tells you nothing, so take another breath,

Icarus is flying too close to the sun

Icarus’s life, it has only just begun

This is how it feels to take a fall

Icarus is flying towards an early grave.” – Bastille, Icarus

Shortly after I wrote my last post, we found out that a well loved relative has  a confirmed case of prostate cancer. In a scale of 0-10 in severity, the doctors ranked it at a 9. He has to have 5 days of radiotherapy for 7 weeks, and it is too risky to operate. With treatment, they’ve given him ten years, which given his age is an impressively long amount of time. When we first found out a few weeks ago, I cried for him. A lot. Because when you think about losing someone you realise how deeply you care about them, and my level of caring for my family runs right through my core and out the other side of me. Everyone around my parents’ dinner table was really pleased to hear the news (the ten year part, not the fact that he has fairly advanced cancer). They soon went back to worrying about what shoes my mum is going to wear when she goes out with her friends on Thursday, while my brain stayed stuck on the man who never fails to make me laugh until I cry.

In light of this, and various other stuff that I didn’t really know how to deal with by myself, I had a couple of beers. Literally two small bottles. That’s all it took to get me drunk in my current state of health, and (as I always do when I’m drunk) I began spouting off things about biomedical science. This morning I found a detailed sketch of a human pelvic girdle in my notebook (labelled and everything, male, judging by the features I’ve drawn) with writing at the top telling “my sober self” to “be strong like a pelvis” (I don’t even know, we’ll leave that one there). I also wrote what follows (I felt I should contextualise the whole thing). Drunk me is incredibly honest, blunt me, and it seems the only person I could talk to last night was my laptop, and now you guys. Say hello to drunk me, she says all the stuff I normally wouldn’t. Warning: she mentions the grim reaper, but they are thoughts I really wanted to share and couldn’t find the words to because shame stops sober me from doing so. 

Ten years from now the people I love probably won’t all be together if the doctors are right, but then again, doctors are often wrong about what humans can survive, and what they will be capable of if they do. Even we do not know what we are capable of until we are doing it. But I’m scared. I’m scared for him, and I’m scared that even in light of his health sucker-punch (because let’s face it, that is a bit beyond a hiccup), his ten years are a lot longer than I have. And this is only a little bit of the alcohol talking, because all the extra OH groups haven’t corrupted my brain cells enough to switch off the emotion yet (may I just interject and say SEE, drunk biomedding! – yes this a new term I have invented for my brain’s drunken refusal to think about anything other than biomedical science usually. Anyway, I shall let drunk me continue). I am still scared. I shouldn’t be, it is selfish to be, and I don’t know why I can only admit the level of it when my inhibition is bathed in beer (which it was stupid of me to drink, because my body struggles enough, but honestly, I couldn’t. I just couldn’t. There was nobody to turn to. There were only bottles. I can’t even look at the dog because my fingers find that new tumour thing on his leg and it just breaks me every time because that scares me too.) Anyway, I’m scared (and incredibly grateful that my laptop has some weird autocorrect function. Thank you Mac, you have served me well). Wait, I’m trying to say a thing. I need to say the thing. What is the thing?

Ah, the thing.

I am Icarus…

Not actually Icarus, but pretty much Icarus. The story goes like this: Icarus was in a pretty bleak situation right? He was being kept prisoner (with his dad) by some king or something I think, and his dad made these wings out of wax and wood so that they could fly away and escape, so obviously they had to stay away from hot things. Icarus had a brain, he clearly knew this because duh, wax. But he was so happy to be free and so ridiculously excited about the fact that he could fly (because hey, he could fly!) that he flew too close to the sun, and the wings melted, and he plummeted to his death because he was an idiot that couldn’t listen and do the sensible thing like his dad told him to do (and like uni dad always used to tell me to do). Now do you see why I am Icarus?

I dance with death too often, and it’s making me dizzy. I put myself in dangerous situations to avoid safer situations that just feel dangerous because PTSD takes over and I freak out. For the past few days, I’ve been giving myself IVs into tiny veins between my toes that normal cannulas would never fit into… Every four hours. To stay alive. Because my body needs a lot of help and even at the thought of getting it I lose myself in a flashback and freak out to the point that I want to run out of my own mind. I was told to go back to a hospital if I ended up in this situation. That so. Cannot. Happen. Should, but won’t. Stupid, Icarus.

Part of me knows that the inevitable will happen, that I am stringing myself along in a medical emergency and that I have an even narrower margin of error before the grim reaper and I elope together, never to be seen again. A far stronger part of me is in a primitive state; it learned, like an animal learns. When it is scared, it hides away and pulls my rational mind around it like a balled up comfort blanket, and it lashes out like an animal lashes out, baring its teeth and making a lot of noise to try and scare away whatever it is scared of. It learned instinctively through the things that it has experienced, through the things it relives in flashbacks fairly frequently… And it has chewed off of its leash and is ruling supreme. Isn’t that what fear does? Doesn’t fear turn us all into primitive beings focussed only on survival? I am not scared of death. When you’re ill enough to die or even just lose consciousness, it comes as a relief, trust me. I’ve laid in hospital beds and longed for it as septicaemia and the grim reaper joined forces. I just don’t want to die. And I’m scared not of the fact that this might happen, but that I don’t have a choice in the matter, that I am out of control, and that people will tell me I flew too close to the sun.

I have been flying too close to the sun for a long time. I’ve done incredibly stupid things to save myself, and somehow a lot of it has worked. I’m going to see a consultant tomorrow who gave up on me in February and pretty much just left me for the grim reaper. The bit of me he is supposed to think for (because clearly it can’t think for itself) has nearly killed me (and I mean resus, ICU, out of it for days kind of nearly killed me – but no ambulances, because I don’t call those, which the doctors in A&E couldn’t actually believe because I swiftly decided to turn into a human rag doll and require their immediate services and sterile minor surgical procedures in the middle of resus. Yay me. Not. Body, if you are listening, no more of that, thanks.) multiple times since then. I was nineteen at the time he took all my hope away. And honestly, making 20 was a huge surprise (no seriously, I spent an entire month terrified of the end, then I nearly died a week before my birthday. Got out of ICU about 5 hours before I turned 20 and went straight to a concert having only just figured out how to walk a couple of hours before. My body is superhuman when it wants to be, but see: I’m stupid. Icarus). I don’t know how to look him in the eye tomorrow. I don’t want to look at him. It feels like me against him and his team because how do you trust people that left you to die, and then suddenly when you defied all of the odds decided “ok, we might help now. Actually, we’ll just tell you some things that might help and then… Not do them!” How do you let those people have your life, your health, in their hands? How? Why am I crying at the thought of that? Why am I shaking? Why am I seeing his face and breaking down in front of a computer screen? Damn, I’m pathetic. And drunk. I think I’m definitely that. I’m drunk because I can’t deal with the thought of dealing with him, and of losing a relative, and of beating that amazing relative to the end of the road.

Also, when I get out of hospital having nearly died, my health is superficial – we’ve patched me up but we know I’m going to nearly die soon and we hope we can stop it again, even though each time the long-term effects become more and more of a likely risk. I leave hospital with fragile health made of wood and wax – I escape like Icarus did, on wings that are not made to last. But I am always so happy to be out of hospital, and so excited to be able to walk a short way or go back to uni or whatever, that I push myself way too far. I fly way too close to the sun because I want to keep up with the people that live in it. I lose myself in the belief that I can keep up with everyone else. I lose myself in the fear that my university won’t accept me unless I appear to be doing anything but that (nope, not going to start that one, saving that for the other meeting tomorrow. Which I will probably post about because hey I bore you with those things. Why do you read this blog? Don’t you hate me for it? Don’t you think I’m pathetic? My family do. I think they hate me. My dog doesn’t. He is currently judging me for being slightly under the influence of the liquid product of some fermented hops). What even am I writing. This is so not the thing. Back to the thing.

The thing is… How can I even be so insensitive as to think about the thing? I have it easy compared to most. I think I’m falling apart. How do I even have the right to fall apart? I’d like to fall together, but I don’t think the world needs an entire being of such high levels of selfish patheticness… Is that a word? I like it even if it isn’t, it can stay in this post.

Sometimes I have a day or two where I just refuse to accept the situation, the front slips behind the frontline of my false smile, and then I freak out. Hasn’t happened since a couple of my consultants last told me how close I am to the sun – that my body and health are made of wood and wax, and that they’ve no idea how to stop them melting… Right now, I have no idea how I’m almost touching the sun’s surface, and my wings are still intact. I don’t think they really do either. It’s impressive, given everything my body has gone through lately. But I’m scared. Because instead of falling to the earth, I will probably fall into the sun instead and oh help this is also not the thing.

The thing.

One day I want to wake up and for all of these extra thoughts to be gone. Just for a day. I just want to stop trying to manage all of this on top of normal life and… I know all of this is so, so, so pathetic. All those people you see on TV handle their health so well and I’m not even worth the ground those awesome human beings walk on. One day, I want to wake up and find the wings of my health are made of steel again (which would still include diabetes because I don’t remember ever not having to inject so that would probably weird me out), because if they were…

“I would fly away, I would catch my dreams and never waste a day.” – Final Story (Flying Lessons With Icarus)

I don’t even know where I fond that quote. But there. Drunk me went off to hug that dog at that point I think. And then slept. And is now gone. But that’s it. That’s how my brain works. That’s what I think when I sit there in silence or can’t figure out how to even answer a text because the roar of these thoughts drowns out everything else. Today I have an appointment with my disability advisor, and right after that  I’m seeing the consultant that left me to my own fate. But the fear is somehow gone, it grew to such intensity that like a dying star it collapsed under its own mass and gravitational pull. Today is another day. My world began again this morning, as always. And all of that stuff was folded neatly back into its place. 

The Freak Out Is An Idiot

Today I planned to post a very different post (the second instalment of the assistance dog ultimatum) but I screwed up and, if you read yesterday’s post you will have some idea what comes next.

The time bomb appears to have detonated.

I did that fabulous thing where I freak out to the extent that I can’t cope with the situation so much that I just… don’t (I’m kidding, it is far from fabulous, and I know this even as I’m doing it). When people talk about admitting me to hospital, PTSD triggers fresh terror, and guilt takes my other hand and drags me out of the door before rational thought even gets a look-in. Denial pats out the flames of we shouldn’t be doing this, it is stupid and soothingly whispers “It’s ok, it will go away, it will all be ok this time. You don’t feel like you could be dying, so you aren’t. Breathe. Trust the freak out. The freak out is protecting you. The freak out knows all.” Until, in situations like this one, denial loses its grip and runs for the hills just like everyone else whose words I ever found comfort in. As it fades away it shouts one final sentence, “The freak out is an idiot. You’re going to die because of him, kid.”

The freak out is an idiot. But it takes over. And there’s nobody left who knows how to override its message, and so the freak out continues to rule until the situation is so bad that there is no more capacity to freak out. Like now. Rational thought did too little too late.

I woke up this morning, and after being awake for a few minutes I went back to bed, freezing cold and somehow drenched in sweat at the same time. Each time I tried to wake up it felt like somebody had tied lead weights to my eyelids and was rubbing sandpaper across my corneas. My grandparents and I walked all around Sandwich today because they’ve shut a bunch of roads and have stalls and bunting and things everywhere (it is a french themed weekend coupled with a load of street parties for the queen’s 90th birthday). This of course meant meeting a bunch of people who knew all about my life, but whom I couldn’t remember ever meeting before. I walked a minuscule distance to the car park and by the time we got there I was done. I needed sleep. My legs were threatening to give out on me, the world was starting to spin. Luckily (and embarrassingly) we’d gone to the carpark to get Winston the wheelchair from the boot of the car. My granddad assembled him and I reluctantly took my seat. (For the record, being in a wheelchair driven by my grandparents is ABSOLUTELY TERRIFYING. Steer clear. They took out an ankle or two and there were many times when I was nearly tipped out, but there was no way I could have walked and I was grateful.) It was hot, and my grandparents got hot and out of breath pushing me around, which only added to the shame that was making me want to crawl out of my own skin. But then they bought me paella which is one of my favourite things to cook… And I couldn’t eat it.

They went out again and after watching another episode of Breaking Bad on my DVD player (I love it! Can’t believe I waited so long to watch it) I realised I couldn’t actually leave the sofa. And then came the sleep. I’d at first thought I was tired but then I realised it was the sleep – the involuntary sleep which I struggle to ever really wake from once it starts. The sleep that comes right before ambulances and central lines and panicked doctors and intensive care and a smile and a wave to the grim reaper. And yet, I slept anyway. I woke feeling drugged. I’m not hungry (a very bad sign), in fact, I don’t have the energy to eat and the thought of food now turns my stomach, which is a shame, because there are some fresh apples on the side that I really wanted to eat (you know what they say about an apple a day). My head hurts, the world is starting to look funny, I feel lousy, my heart is starting to have a tantrum, and I am experiencing the “you come back here right away” symptom that I was told to look out for but know all too well.

I have no way of checking my bloods, I have no idea what is going on. My grandparents are out at the moment but they will be back soon and I will have to somehow hide the fact that this. Is. Bad. I’m trying to fix it. I think it’s too late.

Who am I kidding, I know it is too late.

And we are a very long way from the nearest hospital.

The truth is, I don’t want to go through this again. I am tired of it. If I’d known in the earlier stages it would never have got this far and that is even more frustrating. I don’t want to go through all the trauma again. I don’t know how to. Not now. Not this soon. I’m not ready to be that person again. I’m not ready to throw more fuel on the fire of my PTSD by putting myself back into an environment with so many triggering smells and sounds and sights.

I shouldn’t have let her let me go yesterday without more bloods, without getting properly checked out. There was a reason London always admit me with bloods half as bad as that. Denial has shifted enough for me to accept that now. Way, way too late.

I don’t like this. I feel properly unwell. I’d go to hospital if there was on here, but then my mum would break all over again.

The freak out is an idiot. I do stupid stuff when I’m under its influence.

It’s getting worse, I have to go.

Time Bomb

I sat in front of a person I had never met before in my life, and admitted that I was scared, because I needed to say it to someone who it wouldn’t hurt. And I didn’t stop there. I told her I’d contemplated running away with the grim reaper, I told her that I didn’t know what to do at times. I told her I felt weak and stupid and ashamed about the state of my health. She looked right at me and told me that it was extremely common for people in my situation to feel the way I feel, and to consider the things I have considered but like to think I would never actually do. She took away the shame of it, and in a way it was sad but comforting to know that I am not alone. She said she deals with young adults specifically. She said that the situation I have been left in, particularly in regards to the massive amounts of medication (hello injections!) was ridiculous.

“So lots of ambulance rides then?” She said, as we discussed my medical history.

“I don’t call ambulances.” This is true. It’s always other people who unnecessarily bother ambulance crews on my behalf. If I’m conscious, even barely so, I walk two tube stops to the hospital nearest my uni – even when I can hardly breathe and barely move (one time a bus driver took pity and drove me to the hospital for free). I usually collapse when I get there, and the doctors ask me how on earth I even managed to walk from the waiting room in that state as they hurry me through to resus, but my body is a little bit superhuman when it wants to be. “I avoid hospitals for as long as I can, which means I usually leave it far too late to go to one – like… Until I can’t really move.” The PTSD conversation followed.

It was my blood that got me, or rather, betrayed me. The appointment was almost over and we decided we’d just take a look at a particular thing.

“I was not expecting that.” I was a little stunned,

“I was hoping we wouldn’t see that.” Came her reply, “I thought I’d check while you’re here, just as you don’t feel unwell with it any more. I didn’t want you walking out of my clinic and people wondering why you ended up back here!”

The level of one thing in my blood was 6.5 times the (highest acceptable) normal amount. And I had absolutely no symptoms, because I’m in such a rubbish state of health all the time that it masked the medical emergency brewing in my blood. I had expected slightly raised results, but the number she showed me was like a punch in the gut. I just stared at it. I knew what it meant. In London they called ambulances for me and admitted me for levels half as high as what I was looking at. Usually they at least order a whole range of bloods to see how my body is dealing with the situation. My heart sank and my thoughts raced and the panic set in. But this woman knew about my PTSD. She knew I was so scared of hospitals, and I’d very vaguely explained some of the stuff that happened to me on children’s wards when I was younger. She understood I didn’t want to be there, and I think she saw me start to freak. Plus, I pleaded with her.

“I mean, you know, maybe if I… (ramble ramble ramble). Maybe that’s just normal for me now? So we don’t need to worry about it.” I tried to talk my way out of the situation. She raised her eyebrows at me and I knew there was no worming my way out of this one. I deflated, kind of like a balloon does when you let go of it before you’ve tied it off. The chair held me up as I slumped into it.

“My grandparents are in the waiting room, I’m meant to be going home with them.” And they are already terrified of my health do not do this now, please do not do this to them. By this point, to my surprise, I really was quite worked up. She sat back down in her chair and looked at me, clearly thinking over the situation and weighing up our options.

“It’s the start of the weekend so I can’t even do anything…” She looked a little deflated herself then, “Ok…. I know how difficult this all is, so… let’s try to keep you out of here.” Hope sort of swelled within me, alongside an astonished relief

“Ok. Great. Can I leave?” I wanted to get out of the room before she changed her mind,

But we need a plan.” I was willing to agree to anything to leave the room.

Injections every two hours – I can deal with that. I already give myself enough of them every day.

“If you feel worse, or this gets worse, or this plan isn’t working… You come straight back here.” Nope

“Ok.” Well we all know you aren’t going to do that. My brain helpfully pointed out.

She said something about a symptom or two and said that if I experienced such an event, “You come back here immediately.” Small problem – that hospital is an hour away from where I am now sat, but I didn’t have the heart to remind her how far away my grandparents live, and I was’t going to worry anyone by explaining why I couldn’t go and stay with them. Also, I’m totally not going to a hospital. Just… Nope.

“You’re very blasé about this. It’s serious, you know.”

“I’m not blasé about it, I know how serious it is but freaking out isn’t exactly going to help.” I do not want to lose all control, not now. I know I’m freakishly calm but for some reason I can’t be anything but that. It is the only way to be. This is what it is and I am trying to think my way out of it.

She calculated the amount of medication I needed, and it was administered.

“I mean it, you come back if you need to. Nobody here is going to judge or lecture you. You can’t afford not to come here if this gets any worse.” I nodded, still freaking out, flashbacks peppering my mind like machine gun fire, the same panic and emotion overwhelming me as it did when the events actually happened, the never healing wound of PTSD torn open again. Tunnel vision took over then – I was focussed on one thing – getting out of that room before I lost the ability to hide my shaking hands, and the terror gave way to nausea and hyperventilation… And tears.

I walked out of the clinic room, a time bomb ticking away in my blood, fuelled by a malfunctioning body, and I smiled an uneasy smile at my grandparents, who were sat in the waiting room. To distract them from asking about the appointment, I said I was hungry as I shakily grabbed a cup of water from the cooler in the corner, and my granddad happily declared,

“You’re definitely my granddaughter” which honestly felt awesome, because someone was proud to be related to me (ish).

When my grandma asked me about the appointment as we waited for Granddad to arrive with the car, I told her it had gone fine. It was a lie, and shame and guilt writhed within me as the words left my lips, but I couldn’t shake the thought that she had been so scared of having me to stay, so worried I would get ill (and clearly with reason). I tentatively told her my bloods had been a bit off, and she instantly began to freak, so I told us both what we wanted to hear,

“It’s fine. It’s all sorted now. Fixed.” Body, this is NOT “a good day to die hard” – Die Hard (I love those films SO MUCH)

I got in the car and we drove away from the hospital I should probably be in, as my heart sank and I thought to myself, what the hell have you just done. Stop running. Stop hiding. Get your head out of the sand, put the brakes on, and go to A&E because you know your body and you know when it’s this far gone there’s no way you’ll catch up to it. You’re just freaking out. You’re not even thinking logically, you’re just feeling and acting on those feelings. Damn it where is uni dad when you need him? Ok no that definitely isn’t a helpful train of thought right now. I wanted to get out of that environment, I was panicking. I didn’t want to face reality. I couldn’t deal with it and there was nobody to talk me out of the panic and into the sensible option. What did I do? I ate fish and chips, and we went home to get my stuff.

As we pulled into my road, we found out that the people four doors down have just got a golden labrador puppy (because they were walking it around in front of their house). Are. You. Being. Serious?!?! NOT FUNNY WORLD, I’ve had enough of your crap today. Rub salt in the would why don’t you. I grabbed my stuff, my granddad battled to fit my wheelchair in the boot of his car (I wanted to leave Winston at home, but everybody insisted that he came along too), I gave my dog a million and one hugs and kisses, told him how much I love him, and then we set off to Sandwich (which is the name of the old little town where my grandparents live).

Honestly, I don’t know what comes next. Worryingly, the fear is gone. I’m not ready to go there again yet – the whole medical emergency and too many IVs to count, and stressed out medical staff lecturing me on the severity of the situation because they don’t understand that I’m so not calm that the only way to stop myself running out of the building at the sight of their name badges is to just switch off every emotion (and that I left it so late to seek their help not because I didn’t care, but because I was stuck in denial, and then trying desperately to fix it myself, and then had a huge mental battle with myself just to go and enter a building with medical professionals in it)…

I’ll diffuse this time bomb myself.

Or die trying.

(I sincerely hope I don’t mean that last part). I don’t know what to do. Every option is wrong. Every option involves a freak out and guilt. Nobody knows how unwell I am right now. I can’t do this to them again.

The Home Straight – My Superhero Doesn’t Wear A Cape

“24 hours?” Nope.

You said that yesterday.”  Is what I actually say.

“If everything’s alright tomorrow-” Nope, nope, nope. Still not the answer I wanted.

“Do I really have to stay? I just want to go home, please?”

“We need the results of your latest blood tests first. I want an ultrasound and more tests to check that your kidneys are ok. We’ll see in 24 hours” We’ll see? So many levels of NOPE.

“I feel fine.” I groan, pleading with her. The internal battle this triggers plays itself out in the expression on her face. “Please don’t make me stay in the CCU another night” And then, before she can answer, I take advantage of her hesitation, “Do I really really need to stay? I can just come back if you need me to? This is all normal for me, it’s fine” She looks at the other two doctors in the room – the ones who’ve been dealing with me on the ward – deep in thought. 

“This isn’t normal. You still have pitting oedema and this is a complex presentation…” I should let it go, I know she isn’t keeping me here for fun, but I feel so much better now. And I know I’m better because two things usually happen when I am:

1) My appetite returns with avengance and I eat all the food I can get my hands on, even cheese (and I. Hate. Cheese.) 

2) I completely freak out about being in hospital, the boredom kicks in, and PTSD fires flashbacks and into my mind like machine gun fire, taking me back to some awful experiences I had in hospital when I was younger. Then I start to dream when I sleep – nightmares where I relive previous traumatic hospital treatments and wake with a certain doctor’s face imprinted on my brain, shaking, drenched in my own sweat, my cheeks wet with tears.

I ate three breakfasts this morning. And then four packets of biscuits. When the doctor told me I had to stay for 24 hours minimum, my mind left the room and this time I had a flashback to an event I hadn’t revisited in such a way before. My thoughts went back to late last year, to London, to the time I was left with no treatment and none of the meds that keep me alive for 18 hours; the time I pleaded with everyone I saw and they left me alone in a bed die and in response I… very nearly did. I can’t talk about it without crying, but I didn’t realise it had affected me enough to haunt me in such a manner. The terror was raw and overwhelming and I couldn’t switch it off. Get me out of here NOW. In fact, now isn’t soon enough, get me out of here yesterday. Help. I can’t do this any more. Nope. Done. Help. Nope. (Hello freak out) I hold my hands to stop them shaking. I gulp down tears. My voice comes out all funny this time,

“I want my dog, I need my dog. Please.” Not the most rational argument to make right now brain, shut up and let the woman think. But my dog makes everything feel ok, he lets me cry on his shoulder and bury my face in his fur. He doesn’t laugh or judge or misunderstand when I have flashbacks, he doesn’t shout at me for ruining his life or make me hate myself; he loves unconditionally and he is the only living thing I know that will always be there for me, the only thing on which I am willing to fully depend (or voluntarily depend on at all actually). So all I wanted, and all I want right now, is my dog. I am not ashamed to admit that the great love of my life is a chocolate Labrador. He also knows when I’m unwell and wakes me up at night, so he’s actually responsible for the life that he significantly improves too… Anyway, I digress. This is not a post about my dog.

But look at this adorable picture I took of him the other day when he fell asleep on my lap – this so totally should be a post about my dog. My superhero doesn’t wear a cape, he has four paws and a tail!

We stare each other out a little, the doctor and I. She turns to her junior, looking hesitant and considerably reluctant. She sighs a little, and still looks a little like her doctor brain and her human brain are at war with each other as she says,

“Cancel (some test they wanted)” Excuse me wait what that worked?! Am I imagining this?

“IF the bloods are ok and your kidney function is fine, you can leave this evening. But only if they are ok and the diabetes team are happy. If you feel unwell again you come straight back to us ok.” Nope, not imagining it. My persistence actually worked. Also I am sooooo done with this and totally not returning to a hospital any time soon under any circumstances (clearly the freak out and the fear that generated it talking here)

Do you still want the scan?” The more junior doctor asks. Now that I feel better I can actually see his face properly. I don’t really remember all the times he stuck needles in my arteries. 

“Yes. Hopefully they can do it today” Hang on… What do you mean ‘hopefully’? I need a little less hoping and a little more happening!

“I’ll see what I can sort out” her junior replies. If you can’t sort it out I’m walking out. The freak out is beginning and there are no uni parents to help me deal with it or switch it off or guilt trip me into returning to the hospital after I run away this time.

“So I can leave today?” I give her a gentle push in the direction I’d like her to head.

“Possibly” I’m not hearing no, which means yes. Excellent. Now, about his exam we have tomorrow…

Optimism overwhelmed me at this point (as my brain got lost in thoughts of epically failing microbiology), because it was the only way to remain whole. Cracks spread through my entirety and I struggled to hold myself together because suddenly I was so done with hospitals and doctors, with being watched while I give my injections and hooked up to a continuous 10 lead ECG that tethers me to a heart monitor and means I can’t leave the room (see, I am considerably less resilient/ strong than people think I am. After five days in the cardiac critical care unit my patheticness has finally kicked in – yes I know that isn’t a word) But the hope of leaving was the tape I needed to hold everything together. 

I’m sat here waiting for a scan and filling out my menu choices for tomorrow to order meals I am never going to have to eat. Lunch is here (NHS roast dinner – smells amazing) but I’m nil by mouth until the scan is all over and done with so I can’t eat it (which is a shame because it’s the one meal that all hospitals universally seem to cook well… Ok they just heat it up but still…) The doctors were finally able to give me diuretics today as whatever was stopping them being able to do so is no longer an issue, so this should improve things as far as retaining water is concerned… And I’ve decided I’ll be gone from here by tonight.

I’m on the home straight.

And the exam stress returns. 

(Eventually one day university may stop being my top priority, but evidently that day is not today because now I’m majorly freaking out about whether or not I’m going to make it to this exam. I’ve never been so relieved to be stressed about an exam before, it’s dragging my focus away from things I don’t want to start overthinking.)