“An Act Of Kindness”

I’m kind of embarrassed to say that things lately have been becoming increasingly… tough (I hate the ‘t’ word, because I’m not sure I’m justified in using it to describe my circumstances EVER). It feels as though I’ve been watching every element of my life slip away around me, with not enough hands or enough strength to catch the parts worth saving. I’m always very aware that I’m lucky (incredibly so) that my life isn’t awful. There is a huge capacity for it to have been much, much worse. I always use that attitude to drag myself up out of the places my mind gets stuck, tell myself I’m an ungrateful idiot, and move on. But things pile up. Normal 21 year old things, the impending doom of exams that I’m far too unwell to prepare for (and may not even be able to sit, as they are only next week), a crime committed against me in my own home, the huge emotional mess that existed before and after that, family disasters, and all the health stuff etc. etc. Not the end of the world, and maybe manageable one at a time if I wasn’t so mentally exhausted. But I kept going at the thought of heart surgery, at the thought that it might fix everything and I’d wake up an entirely new person.

For most of yesterday my heart rate refused to dip below 150. With all the marathon headlines floating about, Skippy (my heart) seemed to think we were running a marathon. I slept most of the day, not by choice, but because I couldn’t fight it. I couldn’t catch my breath. Eating was a strenuous exercise. So strenuous in fact that I almost passed out in my dinner. I was a dizzy heap of pathetic incapability that infuriated me. Skippy just said no. He hurt in extraordinary ways. My left arm went dead. I could barely function. Surgery was not meant to do that to Skippy. It was meant to appease him and every aching moment of his freak-out was an anchor pulling me back to the reality that things hadn’t worked. In fact, things were significantly worse. And that… That was a bitter pill to swallow. It made all of me sink.

Then I got a message. From Portsmouth Uni Friend. She told me she had a surprise, and sent me a link. To this. A small charity gig, featuring none other than Bastille. In Islington (an area that just reminds me of the hospital Skippy and I used to go to near there). On the 22nd of May. She knew how much the music of Bastille has meant to me through some pretty tough times, what it stood for, what it got me through. And she said, “shall we go?” And then another friend messaged, saying she knew how much that music meant, and she’d even buy my ticket. With the track record of things that seemed too good to be true turning out to be… hopeless hoping, I didn’t think anything would come of it.

So I went to bed. I was up all night, and I was scared. I stayed up until 3am, with Skippy racing the entire time, feeling almost as tired as I was in the end. For some reason, if I sat up and turned the light on, I was sure it would stop him from stopping. It was irrational for me to think I might never wake up, but after surgery Skippy is a beast I no longer know. He’s different now. Alarmingly so. I drifted off. Palpitations woke me from sleep. Chest pain stopped me drifting back off. Over and over again. I’d sit bolt upright and just hold my chest and oddly enough… Talk to the freaking out ball of muscle beneath my sternum. Skippy didn’t listen. It didn’t stop me telling it ssshhhhhh, it’s alright, over and over again. I was too wired to sleep. So I put in my headphones, and listened to Bastille’s Pompeii on repeat, because from the first time I ever heard that song, it has never failed to calm me down. I haven’t had a night like that in a very, very long time. It was draining. I was scared by it, stunned. I hadn’t expected it. I woke up almost afraid to stand.

With my heart in such a state, I naturally began thinking about the consequences. My exams start next week, and I would be in no state to sit them in my current situation. Then what happens to my third year of uni. Come to think of it, with a heart like that, how would I ever get a job? I wouldn’t be able to go for a walk, and I’d certainly never run again like I dream of being able to do. And my thoughts frantically raced around my brain trying to find something that might be unaffected, and there was nothing. Skippy has a hold of everything, and when he rebels, I lose it all. So I was searching for something to wake up for, to carry on for, to motivate myself with… And I just watched everything slipping away. Stupidly,  I couldn’t find anything left. I was so tired. With all my health issues. But mostly with the idiot inside of my chest. Skippy in his current condition isn’t going to kill me, he’s just “limiting your life” in the words of my cardiologist (which tells me that there isn’t really any reason to be significantly bothered because hey, the thing could be about to kill me and it isn’t). But still. I ground to a halt.

And then this morning, at 10am, with Skippy still shaky and determined to misbehave and me trying and failing to focus on revision through his aches and grumbles, I got a message. Two tickets to see Bastille at a pretty small gig. Me and Portsmouth Uni Friend. HK Uni Friend adamant that I would not pay a penny for my ticket. I was, and still am, astounded by their kindness. Completely. Astounded. In fact, it all seems a little surreal. They simply said I needed a reason to be happy. They said I deserved it. They said my life was unfair. I don’t deserve such awesomeness, and there’s nothing unfair about my life at all; in fact, I’d rather me go through all of this if it means that somebody I know or care about doesn’t have to go through it in my place, and I am frequently thankful for that fact because I think that’s… Fair.

And now there’s something to look forward to, something Skippy can’t take away, because even if I have to crawl, I’m going. My friend pretty amazingly said that even if we go and I end up unconscious (as I did on my birthday when we went out), it will be entirely worth it. And that’s pretty much my view. Skippy is wrecking a lot of things at the moment, and right in the middle of the void that has created, there’s now something to aim for and look forward to and… Be on the planet to witness. A calm, right in the middle of the storm.

And that’s all I needed. Something to look forward to. Because nothing seems bad anymore. I have perspective again. I’m sat here with Skippy still being an idiot, waiting for an arrhythmia nurse to call and… I’m lost in this awesome little bubble of happiness where fear cannot find me. I have something that makes me feel 21 again instead of 80, and I kind of live for moments like this. Where normal 21 year old things happen. I just suddenly have this overwhelming feeling that things will be ok.

It all works out in the end, I guess.

You don’t appreciate solid ground until you’ve been lost at sea.

(Also, yes the title of this post is also that of a Bastille song. Very fitting today. My friends are… well, I don’t deserve them at all, but they mean the world to me).

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Awake (Because Of Her)

I felt like I was going to pass out. Mum was on the phone so I started serving up dinner for my nephew and my little brother, and I started sweating like I’d just run a marathon in the middle of the desert while wearing a ski jacket. My legs felt weird, all of me felt weird and I… Dismissed it and carried on. Until I sat down and the world really started to feel weird. So I checked my pulse. I couldn’t find one in my wrist – my heart clearly couldn’t be bothered to beat hard enough to provide a peripheral pulse strong enough to feel. I put two fingers over my carotid artery and found a weak pulse. I started the timer on my phone. 4 beats every second. 4. Beats. Every. Second. Oh Skippy (my name for my heart), not now. Dude, not now. I was already in very mild acidosis again, and trying to pack my stuff to leave for uni. I was cold to touch, but I felt like I was melting, so I stood out in the garden in the cold, the world spinning in a way I’m not sure it is meant to. And I was incapable of worrying, because I’m seemingly incapable of feeling at the minute. So I just sat back down and decided that if I ignored Skippy, he’d slow down. No need to worry, because the rhythm was fast but regular. Right?

And then I packed my stuff up into my uni backpack. And just before we left I went upstairs to put my slippers in my room. Mistake. Stairs + Skippy on a good day = tantrum. Stairs + Skippy when he is beating way too fast and is getting tired = walking back down the stairs with him missing beats and feeling like he’s skipping and flipping and rolling and writhing in my chest. It knocked the breath out of me. The world went black. My feet somehow found the next step. And then the next. And I grabbed the handrail, and I made it to the bottom, my head floating, my heart FREAKING. I told myself it was all in my head, and got in the car.

And then we set off for London.

We sped along the motorway as all the idiot drivers in the world seemed to gather so that they could cut us up, and I just didn’t want to go. London wasn’t home.

When I was seven, my favourite artist was Cat Stevens. My dad used to listen to his Cat Stevens CD in the car, and at the age of seven I knew all the words to all the songs. I sat in the car on my way to London today (now yesterday), and I wrapped myself in the comfort of that album. It played in my headphones and I was suddenly in my mind curled up in the back of the family car on a long old drive, safe and contented. And I remembered every word to every song. I sung softly, quietly, and internally I cried the tears I couldn’t let fall.

Getting out of the car was the hardest thing I’ve done in a long time, just walking away from this metal box that could take me all the way back to my dog and to familiarity that may be unhelpful right now but is exactly that… Familiar.

According to the “DRAFT SAVED” bit of this webpage, I started this post 10 hours ago. I was going to go on to say something along the lines of “I spent the day with My Fellow Third Wheel. He overslept but turned up with food, and we had a feast and we talked and we watched TV through my laptop and it was so good to just hang with him and be with someone who just gets me. And on the way to London I arranged to go see Auntie Godmother and co. tomorrow evening, and she persuaded me to stay…” But my writing of it was interrupted by a phone call. It was a phone call that started at 20:18 on the “today” before this one, and turned into a series of non-stop phone calls and consecutive FaceTime audio calls that lasted until 05:37 today (wait… That’s 9 HOURS). It was a call made by a person who didn’t think I would answer (my uni friend with the same cardiologist as me, who I met a month ago at her own surprise birthday party), and so was stumped when I did, but had just wanted to remind me that people care about me, and that I matter, and she was there. It was a phone call where I spoke about the lessons I’d learned listening to an old man die, how we spend all our lives focussing on things we tell ourselves matter and neglect the things that really do.

It was a phone call that saved my life. 

It was a phone call that meant someone would know if I lost consciousness. It was a phone call that lasted so long because she stayed on the line just in case, until she finally fell asleep and I hung up, letting her grab a couple of hours of sleep before her 9am lecture (I am placed miles before studies in terms of priorities with this friend). It was a phone call that meant I was still awake at 3am to feel a sudden deterioration in my health. Therefore, it was a phone call that made the difference between living long enough even to post this, and dying in my sleep within an hour. It was a phone call during which I went on an emotional rollercoaster, realising that after way, way more treatment than I should have required, my blood sugars were plummeting at a highly alarming rate – the horror of realising the helplessness, that I couldn’t get out to get anything and had no food left. It was a phone call in which I couldn’t feel anything about that fact, and then vaguely experienced something close to panic, and then decided this degree isn’t worth this, and then cried. I cried. I was so, so scared. It wasn’t stopping and I was terrified. I didn’t want to die. And this totally calm voice at the other end of the phone told me I wasn’t going to die, it was all going to be ok, and she’d call and someone would come and help me.

If she hadn’t cared enough to just check in. If she hadn’t spent hours trying to help me untangle my feelings with empathy (not sympathy), understanding and psychology knowledge passed on from her psychotherapist mother… If I hadn’t answered that phone… If I hadn’t have checked my blood sugar and seen a near VERTICAL line on my continuos glucose monitor’s graph (my blood sugars went from above 33mmol/L to 9mmol/L within half an hour, and kept on dropping at that rate)…  If I’d checked half an hour later… If I’d been asleep, as I would have been if she hadn’t have called… I would never have woken up again.

And that…

I think that’s terrifying (I’ll figure out how I feel about it when… All the feelings my brain is stupidly suppressing (??) hit me like a train).

I don’t want to do this anymore. I cried that into the microphone of my headphones with both hands on my head, still not fully feeling an entire emotion and unable to fully freak, so panicking so mildly that there was no adrenaline. And I don’t mean living. I meant that I don’t want to die. I don’t want to go to sleep and almost not wake up any more. I don’t want to live life on this knife edge any more. I just… Broke. We’d started off sorting out uni stuff, drafting an email and discussing work and her telling me she and my other friends would help me get caught up with all the coursework I’d missed and dampening the subdued flames of my fear .I’d read her the email I received in December last year from the deputy head of our school of the university, and she’d been kinda shocked at how unsupportive they were. She understood my concerns about missing any uni at all then. We talked about the lab session this afternoon, about whether or not I would go. She said she’d swap lab sessions and just sit and pretty much run the entire thing herself so I could sit there and just not have to human. We felt a little odd when the friend who left me in resus to go and study messaged me after a week saying she’d seen I was back in London via the tracking app that my friendship group uses to figure out where I’m at (in case of emergency) – I mean it was just an odd way to introduce the subject is all. And none of that mattered afterwards. But how amazing that someone would do all that? That’s a friend. Right there.

I don’t know what to say.

I don’t even know how to feel and I can’t even just let the emotion play itself out so I can figure out how to feel because I CAN’T FEEL.

My heart is super unhappy (heart rate over 140 while I’m laying down), for a long time I couldn’t see properly and hovered on the verge of unconsciousness. Nothing made sense, and in order to figure out what to do I had to throw a load of drunken-sounding illogical stuff at my friend before we found some sensible (and she trusted my judgement towards my health and how to manage it WITHOUT QUESTION, for which she is even more amazing). I feel absolutely drained of all energy. I feel unwell. But I’m alive. And I figured out that I want to be alive. I just don’t want to be in London. I don’t want to waste my life on this degree. What’s it for? I was here, alone, and I almost died. I was away from the dog who would have woken me up way before that point (really should re-evaluate the service dog thing I feel). And I was here for a bit of paper. What’s it all for? It isn’t what matters. I am 40 miles away from the things that matter. Modern life is all so superficial.

“Social media has given us this idea that we should all have a posse of friends when in reality, if we have one or two really good friends, we are lucky.” – Brene Brown

Today was another day I almost died. There have been about five of those in the last three weeks. I looked down at my body, and I asked it to please stop. Please. I cannot handle all the health hiccups. It feels like rapid machine gun fire.

“It hasn’t been a totally smooth road, but in the whole span of things I feel like a very lucky person.” – Edward Furlong

It all feels so surreal. So quickly I was almost gone. My blood sugar levels ended up dangerously low even after I’d spent almost 45 minutes eating every gram of carbohydrate (and eventually spoonfuls of neat sugar) in sight. If I hadn’t been awake to do that… I can’t. I mean… It doesn’t even feel real. I’m kind of in a state of numb shock. So out of control so quickly. And far, far too close for comfort.

None of my other uni friends know I’m back in London. I don’t know how to face normal people.

None of them are even awake I expect.

One of them is sleeping having spent the most ridiculous amount of time on the phone to me. And I am not sleeping the forever sleep, because of her.

Words fail me.

I Never Thought I’d See The Day

I don’t like bothering people. I’m always terrified that people will walk away from me due to my health (because so, so many have) and it stops me burdening the friends I have now with the reality of the situations I end up in. I play things down, and when I’m in hospital few people usually know. My absence is not often noticed – people don’t message when they notice I’m not around, and I wake up to an empty message inbox on my phone. The people who do know have no idea how lonely I am, and have no idea that I’d sit and watch them walk past the hospital to go to lectures at the medical school. They had no idea how much it hurt to know they couldn’t be bothered to cross the road for me. But I can’t blame them. It just made me stop talking. Start hiding.

I never thought I’d see the day when I had the kind of friends that I have now. I handled things differently this time, I gave them a chance. They handled things better than I ever thought a group of 19-20somethings would. And I am so touched and blown away with their support and responsibility that I want to mention it here. I kind of just want to say what my friends did, how they acted, and how much it means, because I still can’t wrap my head around the fact that they care so much for so little reason (the middle bit is kinda boring, but the end is the bit that really really gets me).

WR Uni Friend took me to the hospital, and after I became too unwell for her to stay in the resuscitation unit with me, she sat in the waiting room for hours. Uni Pal joined her, sitting there for hours and leaving before I was “with it” enough for people to be allowed back to my bedside. They both appeared together later (Uni Pal brought refreshments), and stayed with me until the early hours of the morning when I was moved to a ward.

In that time, Uni Babe had messaged me to ask if I was conscious, and, getting no reply, concluded that I wasn’t. She’d known I was heading to the hospital, but had no idea when or if I’d made it, and apparently had visions of me lying in a ditch slowly dying. She called my accommodation (multiple times because they kept hanging up on her) and asked them to go and check my room. She then called the hospital and ended up on a wild goose chase of phone calls until she found out I was in A&E, at which point she calmed a little.

Something super weird happened. My phone filled with 18 messages as I laid there almost dying, and when I was with it enough to be able to sort of see and had the energy to hold my phone, I almost cried. I’ve never had that. Ever. I’ve never had people hear that I’m in hospital and care enough to message. News seemed to have spread a little among my close friends, and their concern was evident. It made me feel guilty, but it also moved me beyond belief.

Normally I’d have simply replied that I was fine but in hospital. One of the doctors told me that people needed to understand what had happened so that they could be there to support me in the way that I needed them to. He wrote a very long message in the notes section of my phone, and told me to copy and paste it to anyone who had messaged me as I laid there, when I was able to see well enough to read again. And I… Did. The next morning, I sent that message to anyone who had messaged me. I was honest with people about how bad things had been. WR Uni Friend had no idea, and had the night before been telling people I was fine (clearly she had no idea of the situation, which kind of makes me glad because she would have worried).

People decided to visit. My closest friends knew I was scared of hospitals but none other than Uni Babe could comprehend the true level of the fear. Even so, they decided that they didn’t want me to be alone, and I woke up the next afternoon to find WR Uni Friend and Uni Pal stood at the end of my bed. They brought chips  from the fish and chip shop. WR Uni Pal brought me her women’s rugby team jogging bottoms because I didn’t have any pyjamas. They sat there and did uni work. I tried to stay awake and thanked them over and over because I was so touched. After they left, HK Uni Friend appeared with a bag full of my favourite foods, and a bagel and some pastries from the 24 hour bagel place in Brick Lane that we often go to late at night. She didn’t want any money, and had clearly been on a hunt around some shops. It was all so surreal and I still can’t believe that people were so nice. I don’t understand it. It’s just me… But it meant the world. It meant THE WORLD. For the whole of visiting hours, I was alone for ten minutes.

The next day, Uni Babe showed up at the start of visiting hours. After a few hours, Italian Uni Friend and another uni friend who I’ve only known 3 weeks (the one who was just referred to my cardiology consultant) showed up, and they stayed for a couple of hours. They brought me food too. But most amazingly, they brought themselves, and I was so stunned I kept thanking them and asking why. By this stage people were just telling me to shut up. My old friend from sixth form turned up shortly after they departed, with a hot chocolate. She stayed until way past visiting hours. I sort of pushed her into sending and email to get some stuff sorted, and she’d brought me some adult colouring sheets from a little booklet on PTSD and nightmares and stuff that she had which had a list of grounding techniques and stuff that she thought might help me. Anyway I’ve made my point – I had a lot of visitors. People were just so thoughtful. I really don’t deserve them.

Another huge thing was the fact that I made a group chat specifically to update people about the hospital situation. People kept asking, and messaging was so exhausting that it was easier just to post to them all at once. A couple of extra people asked to be added. I don’t normally update people on stuff, but it was actually really good to have their support, and everybody wants me to keep the group chat so that if I end up in hospital again I can easily let them all know. I don’t usually tell people stuff. I don’t usually say what’s going on. It was weird to actually do that. But it helped me, and I knew that in a group chat all my friends could support each other through whatever I told them, which made it easier for me to tell them how serious the situation got.

I also messaged Auntie Godmother, and called my grandparents to let them know. My parents never usually tell anyone, and they don’t want me to tell our family members if they haven’t, which often really annoys my family members when weeks later they find out how unwell I’ve been because I see them and just sort of mention it. This time I didn’t ask for permission. I didn’t care. I’m 20. I don’t live at home. It’s my life and they are my family too and they had every right to know. My parents didn’t even tell my little brother I was in hospital, and I needed to not feel invisible in this family any more. They deserved to know. Auntie Godmother is like a second mum to me and when she told me how much they love me (in response to me getting all slushy and telling them how much I love them and that their house feels like my home) I felt all the feels.

When I was let out of hospital, Uni Babe and Portsmouth Uni Friend sat in my accommodation with me for a few hours because I felt weird and told our group chat that didn’t really feel safe to be alone. Uni Babe helped me pack my bags up and carried one of them out to my mum’s car when she showed up. She calmed me down when I lost my cool at the sight of an ambulance. And she had the best idea anyone has ever had. She’d been thinking a lot, because the situation on the day of my admission had made her very uncomfortable. She started talking about finding a way to know where I am. She’d really been thinking about it – she mentioned bracelets that you could just press and they called 999. She mentioned tracking and stuff. In the end she posted on the group chat suggesting that we all downloaded an app called Life360.

It’s a tracking app with a group chat feature, which shows other people in your group an accurate location of where you are (each person pops up in a little bubble and it shows an exact location on a map which also shows a satellite image if you want). It also shows them the battery level of your phone, and whether or not your GPS is turned on etc. so that people don’t freak out if you don’t reply because your phone is dead or whatever. It lets you ask people to check in, and you can set it to send a notification to all members of the group when you reach a certain place. She wanted us all to download it so that if anything happened to me they’d know where to direct help to, and who was closest to me (I mean. HOW. Mature). I thought that would be a super bother, especially as the others might not have wanted their direction broadcast to us all, but six or seven people downloaded it and joined the family group Uni Babe had made (in which I am named simply as “Superhuman”). One person who wasn’t in the group chat even asked to join our family group thing on the tracking app when I told her about what a great idea I thought it was. I’m not sure how I feel about such an invasive thing  (MOVED BEYOND BELIEF but also a little stalked), but it is a really good idea, especially if I go for a run or whatever or something happens to me. I’m super impressed at how responsibly and practically my friends were thinking though, and how committed they seem to be. It’s so, so strange to me. I feel like we’re properly adults right now, I feel like I have an extra family. I cannot believe I have friends like this. I never thought I’d ever have that and I’m still terrified that like everyone else they will walk/drift/be pushed away. I’m scared of that. I’m scared to settle into the comfort of their awesomeness because they are so incredible that I know I don’t deserve them and I dread the day they realise that.

I never ever thought I’d have friends like this. Ever. And weirdly enough they seem to think I’m a good friend because I keep asking about them and trying to be there. They say it’s touching. But until they’ve experienced the kind of friendship that they provide, they don’t know the meaning of the word. I honestly can’t believe people care so much about me with no reason to. I still can’t understand it, I can’t accept it. It makes me feel unnerved and weird and guilty… But I like it. I feel like I matter a little.

I handled things differently this time and I felt like such a bother. But my friends handled it differently too. They were beyond amazing.

I never thought I’d see the day.

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.

 

No Excuses… Even Now

We all know what I’m like about university work. The “#NOEXCUSES” sticker on my laptop perfectly sums up my attitude towards completing uni work. There is no reason in my mind not to do it. The fact that 24 hours ago my blood was at fatal levels of acidity and I was too unwell to be moved to intensive care from the resuscitation unit… wasn’t an excuse to my brain. It was a mere hiccup. 

No Excuses, Superhuman, Never tell me the odds, Caroe Diem… these stickers sum my attitude to life up pretty well

Forget the fact that I spent a few undignified minutes silently sat in my own urine because the doctor accidentally disconnected my catheter and I was too embarrassed to say anything in front of my friends (I persuaded them to go for coffee and they returned after the problem had been solved, with a slice of cinnamon and banana bread that was HEAVEN). Forget the fact that I was at significant risk of becoming acidotic again. I was stressing about the coursework I have that is due in on Friday. I was stressing about the lab session I’m supposed to attend tomorrow. I was trying to figure out if/who I should email about the whole thing, but after my admission around this time last year, the university talked about me leaving, and so I wanted to do anything other than trigger a similar situation. If I leave, I want it to be because I chose to, not because I was made to.

The benefits of almost dying while at uni as apposed to anywhere else is that I still have my laptop and all my coursework stuff in my bag. I also have spare underwear and a book (as someone who ends up in hospital a lot I’m always prepared)… But uni stuff is what saved my butt here. Unfortunately having it with me was as much a curse as it was a blessing. In the early hours of this evening I took out my laptop as Uni Pal sat studying away and making notes on hers, and attempted to complete the lectures I had sat in with a pH of below 7. This reminds me of around this time during my second year. Uni dad walked in to find me on my laptop frantically trying not to fall behind. It was reading week (we are currently in the week before reading week) and all I did all day for the next three weeks was work from my hospital bed as my heart stressed people out and my pH regularly dipped below 7.1. In a strange replication of that same situation, the urge to study now that I felt better hit me hard. I can’t stand unaided, I can’t sit up for more than a few seconds without my muscles shaking and refusing to hold me up… But I can prop my head up with a pillow so that I can see my laptop screen, and so I can study. In my mind, that was resting. I’d slept my entire day away, and writing up the rest of the incomplete lecture notes sat on the screen before me completely distracted my mind from where it was.

Ironically enough I ended up going through slides on acidosis and how it impairs enzyme activity and stops your body producing ATP (energy). People were googling acidosis and reading about it on Wikipedia and asking how on earth I had managed to get the bus here and why I hadn’t called an ambulance. Because I was this strange combination of stubborn and terrified, that’s why.

I also have the start of a novel on this laptop. I forgot that November is NaNoWriMo (national novel writing month) when I started it the other day and feel that I now have a project, although I really would like to catch up on everything I’m so behind on and am starting to use uni as a way to distract myself again.

Last Friday when I was bored in my lecture I ordered an MP3 player, downloaded all the audio files of our lectures so far and the ones my friend had recorded also, and saved them onto the MP3 player. I decided I could use this to distract my mind from where it is and also catch up on the lectures I missed. Unfortunately, I don’t have it with me. It lives in the bag I’ve been using for uni, which for some reason isn’t the one I used on Tuesday. Awesomely enough this hospital has our university wifi, and all the lecture recordings are saved into my memory stick, so I can still re-watch/ listen to all my lectures in hope of zoning out into my happy place and keeping the flashbacks at bay. I know I am unwell enough to need to be here because a) I’m still in a higher dependency ward and b) I’m not losing my mind yet.

Uni Pal and WR Uni friend showed up while I was asleep and brought me chips. They sat with me into the late evening, studying by my bedside (which eventually made me attempt to study when I was with it enough). HK Uni Friend turned up briefly after they left, with Brick Lane bagels and pastries and drink and pineapple and other food she knows I love. 

This time being in hospital has been different. When I came round in resus, there were SO MANY messages on my phone. I have four people visiting me tomorrow all on the same day! Usually I don’t get four in total over weeks and weeks. This time a year ago my only regular visitors were my Uni Parents. I told people all of everything this time. 

A rather good looking make nurse in A&E told me (after asking why I was sorry and me just apologising for being so much bother) that some patients were a bother, but I wasn’t one of them and he liked looking after me because I was nice. He said that if my friends knew how serious the situation was they may be more understanding and that if I were one of his friends he would want me to tell him everything, not try to protect him. A couple of other staff members backed him up (apparently there were many highly attractive doctors in resus, and I was too out of it to see any of them!) so today I told people kind enough to message me or curious enough to ask, the entire truth. 

I don’t want to be here. I don’t want to do this again. But it’s so much easier with constant visitors. I no longer have to watch everyone else sit with friends and family while I lay alone. I can’t do anything for myself at the moment, but I’m doing well with the help of my friends. I’m rarely alone with my thoughts that is brilliant to be honest. They’re trying to make sure that during visiting hours I am not ever alone.

The same HCA as last night is back and he’s so funny and blunt it’s hilarious. He likes me because I’m the only person he doesn’t have to shout at to get a response from and apparently I say please, thank you and sorry a lot and that goes a long way here because few people do. I have to go now, my friend is at the Bastille concert I wish I had been able to go to and she’s going to FaceTime me so I’m there too. I have THE BEST friends.

I also have THE BEST view, just look at tonight’s sunset

Sorry I keep posting so often, I’m just trying to feel less alone when I’m awake and acidotic and alone. I get a lot of support on this blog and comments from people I regard as friends but who I’ve never met. I value those people and their involvement in my life as much as anyone else, and I want to keep them updated to. This is the only way I have to do that and I hope they know I’m ok.

Anyway, I’m waiting for that call from my friend at the concert. There go Bastille, getting me through hard times again with their music.

No way but through.

There Will Be A “K”

I told myself I’d have a break from university in order to avoid breaking, and somehow found myself sat in the library at almost 10pm this evening, having been there for over five hours. I never go to the library, but my room is currently a tip, and as a neat freak I couldn’t handle staring at what can only be described as a landfill in combination with the isolation that I feel being shut inside here. Usually I’d have been completely freaking out at the amount of work I had to do, and I got to the stage of pre-freakout (which was enough to push me out of the door), but I’m kind of dead inside at the moment and that seemed to smother any sort of emotional reaction whatsoever. I finally did a piece of coursework that I’ve been meaning to start for a week, completely gave up with another, and then wrote about assays used to test for diabetes (which I found super easy, having had most of the tests myself).

I locked my computer and went home at one point just to collect the parcels that had been delivered (the MP3 player I ordered when bored in yesterday’s lecture, and the new earphones I ordered last night) and returned to save all my lecture recording onto the MP3 player so that I can listen to them over and over without having to have my laptop open or use data on my phone. I tried to work, but it wasn’t thoughts that distracted me (ok, so there were the odd trains of thought about how pointless it all was, and then how pointless everything was, and then a further downward spiral) but my mind was just numb. I couldn’t focus much. I sat staring at the keyboard a lot.

I got a message from an individual who was trying so hard to be helpful, advising me that they’d got themselves in a rut lately and that the best way out of that sort of situation is to get back a sense of proportion and reality.

Great. People think I have no sense of proportion or reality. They have no idea. It is proportion and reality that put me into this rut when I finally allowed myself to face them. Do they think I’m being a drama queen? I give up with humans. 

I’d already decided to spare people from my presence by completely withdrawing and sitting alone in lectures (ok this was mostly because I can’t face people at all, but also through guilt).

Uni Babe continued to be an absolute babe though.

I’ll always do my best to be there for you, and try and understand what you’re going through. You’re so tough and I don’t know how you do it, but I’m so proud that you are xx – Uni Babe

I felt slightly reconnected with humanity, and let her know how grateful I was. I haven’t been that great with words though. My brain just can’t.

And then proportion and reality started asking if there was anything people could do to help, and saying that she would always always be there, and I still wondered if she understood just what’s inside my head right now. I feel bad that my friends feel responsible. When I cried in my lab on Friday several of them asked what they’d done wrong and started apologising for the way they’d spoken to me and stuff. I genuinely don’t think they can even comprehend what I’m going through right now (ok so that proved that they can’t) which feels isolating but I guess is also good, because it would tear them apart too and I care about them too much to let that happen.

I bumped into my old best friend from sixth form in the library (we have so many of the same thoughts that it’s scary). She bought me a hot chocolate because she’s a legend, and I saved her the computer next to me using my coat and a couple of textbooks on sexually transmitted diseases that the guy next to me left behind. She sat next to me, and my brain felt like I was back in our sixth form common room, and it was nice.

I was arranging to meet a friend who kind of knows the mess I’m in at the moment, and the state its put me in, when she told me that her eating disorder had ruined her day and she’d spent the day wondering which vehicle to throw herself in front of. Out of the blue. Completely casually, adding that she counted it as a productive day (obviously joking). As someone who has been tearing themselves apart with thoughts like that an awful lot lately, I didn’t find it amusing, and I was obviously worried. The trouble is, I can’t deal with my own stuff right now. My own stuff pushed me to and beyond the point of wanting to end it all (trust me, I’m already dead right in the head right now). She knew I couldn’t cope, and she messaged me saying something so huge because she didn’t want to bother or worry her other friends. I kind of just stared at my phone as words saying that it (life with an eating disorder) sucked and that she couldn’t do it any more. And I felt responsible. I didn’t know how to words. I couldn’t think and had been unable to all day. I was falling apart. And suddenly someone had put their life in my hands. I tried so many times to reply. One time my friend had to take my phone off of me. Another time I threw it. So many times I put it back down.

There was so much pressure on me not to screw up, not to say the wrong thing. And I didn’t know what to say. I knew I couldn’t make the person on the other end of my phone see how amazing they are, how different reality is to the way that arse hole eating disorder makes her see herself. And I didn’t know how I was meant to respond. Honestly, I was kind of horrified. Kind of pleased she could at least open up to me. Kind of hurt that she hadn’t even considered the possibility that I was broken and breaking down and had cried in front of her and tearing myself apart (apparently she doesn’t quite understand my situation either). But before anything else I just wanted to be a good friend. I didn’t know how to be. I didn’t know how to be a good human, a good student, a good person. And for a long time I haven’t been a good friend – I’m too ill to be there for people. And yet I had to be. I felt responsible for her life. I had been chosen because she cared too much about other people to bother them or worry them, which kind of hurt a little. But I tore myself apart trying to find the words. I lost my mind. I broke a little more. But I was too dead to feel. Too dead to think even. It took me a long, long time to reply. But I found words. I tried to be sensitive and thoughtful and not say the wrong thing. I tried to help. I was so worried. I put everybody above myself, and my friends matter a great deal to me (even the crappy ones, which this person was not, which meant I worried even more). I was scared I’d fail and that because of something I said or didn’t say, she’d kill herself.

And then after a while she casually went to normal conversation like nothing had happened. And I couldn’t even. By that point it was past 10 o’clock, and my friend, who I call “Batman” and I were sat in a chicken shop.

The whole time we’d been together I’d seen in her face she’d wanted to talk. Consciously or subconsciously she’d been dropping not-so-subtle hints. I knew she needed to talk. She knows me well enough to know I’m a complete mess. She also knew I wouldn’t talk about it, because I just… Can’t. Because she knew there was a lot on my plate, she told me she didn’t want to talk about stuff. But I can make her talk, and I did. We sat in a study room at my accommodation, and I poked the hornets nest. She was unfocussed and clearly needed to let it all out. Something unpleasant happened to her last year and she’s still suffering serious emotional consequences.

I know how she works in a way others don’t (mostly because we’re the same person divided between two brains). I’m ridiculously blunt and say whatever I think (but gently) so people know where they stand with me, because I think that’s what they deserve. She opened up. She continued to open up. She said she hadn’t talked about it for a long time, but it was clear that although she was much better than she has been, her mind was a mess. I didn’t care about my stuff, I was kind of humbled by the fact that she didn’t want to dump her stuff on top of mine. But I told her to forget it, I told her to talk. I wouldn’t take no for an answer, because I could see in the look on her face that she needed that.

I’m good at dealing with other people’s feelings, at putting them into words. I know how “Batman” wrks, and I know how she thinks. She laughed when I got things spot on. I knew her thought processes without her needing to explain them and I know how refreshing it feels to be understood. People had been pushing her and pushing her to get help, and I knew it wasn’t that easy. So we talked about that. We talked about antidepressants and that they weren’t a sign of weakness (if only I could listen to myself). We talked about getting help and steps she can take and the people she needs to talk to at uni and stuff. We talked it all through, my scrambled brain somehow injecting logic into the conversation. And because I know how she works, I talked her round.

I helped her see what she knew and supported her in her decision to do what is right instead of what fear tells her to do. She knew she needed to see someone deep down, that the way she was feeling and the things that were becoming larger and larger in her mind could not stay. Waiting for a GP appointment didn’t seem like a good plan. It didn’t seem quick enough. She was too terrified to make the phone call and couldn’t face going (remind you of anyone??). So I told her I’d go with her. Until gently, there was a “maybe” and eventually there was an “I don’t have a choice do I?” with a small but reluctant smile that said I know I need to do this, and it feels like a relief to take the step, but I don’t want to at all. So I said I’d go with her. I said we’d do it together (and we will. Every step of the way because she doesn’t have to do this alone). Even if we have to walk past the door 20 times before we walk in, even if I have to scoop her into my arms as soon as we’re done and let her cry on my shoulder, even if she hates me. It’s such a huge step and I’m so proud of her (I told her that, and I mean it).

We talked until she stopped stressing over the essay due in tomorrow and finally, at half past the first 1am of today (because of the clock change there are apparently two) I walked her to the reception of my accommodation, telling her not to feel bad at all because she hadn’t asked, I’d made her talk and I hadn’t given her an option, I’d told her we’d go (she feels bad for dragging me away from the library tomorrow – I planned to get there at 8am today just to not be in this room, and didn’t get out of bed until half 1 so… She isn’t keeping me from anything). I promised her that afterwards we’ll go for breakfast or lunch or just do something nice, and then we’ll go to the library and I’ll help her finish that essay (she’s doing and English essay but English Lit was my best subject at A level so I can sort of help). I know how important that first step is, and I have every intention of being there with her.

And then I realised that a year ago (in the first couple of weeks of last November), my uni parents had done exactly the same for me. I remember them saying over and over at me to stop apologising, that they hadn’t offered, they had told, and I had no option but to accept their support (which I learned was going to be there whether even in the absence of my acceptance). One of them took me to my first psychiatrist appointment and sat out in the waiting room until I was done, then took me back to the hospital and ate lunch with me because I was all broken and they knew how much I’d not wanted to go. They talked me into doing the right thing when I didn’t know how too and was too terrified to. They got me to open up and talk about things I didn’t know how to say anyone. And in a way I’d done exactly the same for “Batman” sort of.

We both laughed when I kind of thought out loud and said that I was a uni parent.

And then I turned to her and told her,

“It’ll be ok. It hasn’t been. But it will be. You’re in the middle of the oh but there will be a k.”

She said there would be for me too (I rather fear that there is going to be a full stop instead). She said she was always there if I wanted to talk to, and my response was

“I don’t do that” to which she replied I know. It’s not that I don’t want to talk. I tried to. But every time there’s just this great big long pause and then “I can’t” slips from between my lips and my entire mind implodes. I’m bad at talking. And she, like most uni students right now who don’t even have her added situation to deal with, already has far too much on her plate to handle. It wouldn’t have been fair. It doesn’t feel fair of me to talk to anyone, not this blog, not even the uni parents.

I do all I can, but it isn’t enough. I try to be enough and I’m not. I try to be a good friend and I’m not. People try to protect me because of my health or my emotional state (few know of the PTSD and depression) or because they think my life is way too much for twelve people to handle between them, let alone just me on my own… But my friends come first. They always have and always will. I owe them a lot. They mean a lot to me. And I’ll be with them through every oh and every k. I wish they knew that. I wish I could be enough for them. And I know I don’t deserve them at all. They are such nice, amazing, kind people and every day I wonder why on earth they put up with me. I can’t thank them enough. It’s an honour to know each and every one of them and I am so appreciative of the fact that they are trying so hard.

I find it kinda ironic that I’ve been told to go to the hospital or the walk in centre all week and the only point at which I will go is for someone I truly value (which means someone other than myself). I’m going tomorrow, just not in a way people meant (although I may end up going for myself at some point if my immune system continues to be an idiot and let this infection spread despite the antibiotics I’m on, as it currently seems to be doing).

“You’re in the middle of the oh but there will be a k My Brain, today. I kinda like this combination of words. 

One day I’ll be the human/friend/sibling/daughter/student/auntie/cousin/whatever-other thing-I-am-but-forgot-I-am that the world deserves. Until then… Well, I don’t even know how to try at anything right now, but I’ll get right back to trying when the fog clears (it’s super foggy in London tonight, but I’m referring to a different type of fog).

Sorry this went on so long.

No way but through (this have never felt like a more appropriate thing to say at the end of a post. I’m right here with you “Batman” you don’t have to walk through this alone. Ever. Not a single step. Not a single tear. Not a single moment of pain or a single negative thought. I’ll share it all. I’d take it all if I could. Always… That goes to everyone I know, actually).

 

Cooling Off

32 degrees celcius. Sixth form friend’s back garden.

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A 10ft pool that should grow to be up to our waists. Skin sticky with a swirl of sweat and suncream. Ice cold hosepipe water pooling around my feet. Laying on a trampoline while we (the lovebirds and I) wait for the pool to fill. Laughter. Smiles. Sun.

A hug from sixth form friend’s mum.

“What’s that?” all eyes on Bob Jr.

“An insulin pump” I reply.

“And ooh what’s that thing on your arm?” At this, the sudden memory that there is a thing in my arm, and self consciousness as I feel everyone look at it.

“A continuous glucose monitor.” That familiar feeling where I squirm in my own skin, shy, embarrassed, wanting to hide from the things people stare at.

“I didn’t even know you were diabetic until the other day. You’d think you might have told us!” A playful smile, a nudge. My explanation that I’ve never classed type 1 diabetes as much of a health hiccup until recently I realised how many times it nearly killed me. Reliving memories of hiding it throughout my secondary school years. The time I told my football team and they all asked me when I was fat or why I had eaten too many sweets. Embarrassment. Awkwardness.

Joined by my fellow third wheel. The boys get in the pool first. Sixth form friend’s girlfriend and I tentatively hop in after. Bikini top. Swim shorts. Freezing water. Biting the bullet and quickly sitting down. Squeals. Laughter. Sunburn. Cans of beer and cider floating in the cool water beside us. The Norfolk four together again. Sat in the shape of a +.

Disconnected from Bob Jr. who beeps and vibrates like a bleating lamb separated from its mother and calling for all that it knows. 10cm of wire hanging from the white circle stuck to my stomach. All my scars showing. Reginald (the thing that lives in my chest)’s edge visible. Bloated because I forgot to take my diuretic for two days (and I ate bread yesterday). An assurance that my stomach is not big, from people who do not understand that there is usually a cliff at the bottom of my (usually hideously prominent) ribcage which falls to not a flat abdomen, but one that seems sucked inwards as far mine now looks puffed out – there is a gently hill up from my ribcage to where my ascites (fluid gathered in the abdomen) force my belly to stretch out to. Stomach and thighs bruised and lumpy from hundreds of injections (at least 12 a day). Self conscious. Exposed. But my fellow third wheel tells me not to be self conscious. He reassures me via message and then when he arrives he does the same before dismissing the issue, which forces my mind to view it as less of a problem and do the same.

Out of the pool when we can’t feel our legs any more. My fellow third wheel holds me steady while I climb out because I still can’t see properly and I have no idea what my numb legs are doing or how to really control them. Sunbathing on the trampoline again.

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Summer brings out my inner-photographer. Actually, all seasons do. Photography is a passion of mine. Obviously this is just mucking about, but I do take it quite seriously. My camera used to go everywhere with me until medical stuff took its place more recently.

Home late. Happy. Cold shower. Dinner – food I bought myself – two chicken breasts in a chilli, lime and coriander marinade, with half a thingamajig of broccoli, a load of baby corn with a little melted butter on it, and a heap of mange tout. No gluten. Barely any carbohydrate apart from the corn. Happy gut. Dog cuddles. Changing the infusion set on Bob Jr. because the infusion site I’ve been using for 2 days is so saturated with a hard lump of insulin that it physically hurts with each teeny tiny (no longer absorbed) dose that is gradually and continuously pushed into me… And also the suncream and water have made the sticker TOTALLY NOT STICKY, and having the whole thing detached for so long made me worry about what may have wandered up the needle into the wire (all will be explained below the next image – I feel I need to contextualise this)

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The aftermath of changing my insulin pump (Bob Jr.)’s giving set. He is, in this picture, reattached to me. At the top of the image, in the middle of a white circle (which is a sticker) is the needle. This part stays in me all the time and has a rubber bung in the end of it so it can’t leak when the rest of the giving set is detached. The longer squiggly wire underneath, just next to but not attached to Bob Jr. is the part which links the white circle component I just mentioned, to Bob Jr. It has a needle which pushes through the small rubber bung I mentioned above, so that when I disconnect it to do stuff like shower and sit in a pool, none of the outside world can get into me. The total length of these two components together is 65cm…

And somewhere amidst all of this… I invent a thing.

Yes, that’s right… I invented a thing. Genuinely. I found a practical solution to a problem that only diabetics will ever experience. I implemented this on myself, and it has worked brilliantly. I’m pretty amazed, I always wondered how people managed to think of new products and now I think it may be out of necessity. Anyway, it’s a tiny problem with such a simple fix that I can’t believe it doesn’t already exist (hey, knowing me it probably already does). The prototype is working brilliantly. I’m sensing a business idea here, it’s a niche market but a huge one! And I really think so many people will find it useful in solving a tiny little annoyance. Unfortunately, I have NO IDEA about the business world, just have a few ideas that will therefore never be…

But ideas that will be are also just as plentiful. I was already hoping to buy a 10ft pool for me and my dog (and I guess my family too) to sit around and cool off in. I’m now certain that I want to do this, and plan to buy one tomorrow; although I think I will coil a section of the hosepipe and place it in a bucket of freshly boiled water to take the bite out of the cold of the water. My little brother is already planning to invite a couple of our neighbours’ kids round to use the thing. I am the opposite of enthusiastic about this idea. I like my own personal space at the moment, emotionally I am fragile and socially I am… Incapable. But anyway, today I also ordered an inflatable lounger to use in the house (mum said no) garden (I will still sneak it into the house) so that I can read in comfort ANYWHERE without my family moaning that I’ve taken their place on the sofa or whatever. I’ve wanted one for ages.

There was a bit of an incident earlier today involving my spoiled little brother getting what he wanted (and what he wanted was MY food that I paid for. When I am living with my parents they ask that I buy my own food. On my student budget, I like to eat everything I buy. I separate all the food I buy into portions and plan how I will use it in specific meals, but he demanded a piece of my chicken while eating his own lunch, was very rude when I explained that it was already planned into part of a meal, ended up with my mum on his side, world war five, and a piece of my chicken on his plate) so by the time I left the house I a) very much needed to get out of it before I smashed up the place and lost my mind, and b) needed to cool off in more than a literal meaning of the term.

Shortly before I left, a blood glucose monitor turned up on our doorstep, thirsty for my blood (I am joking about the last part). I mean, I’m not going to turn down free medical equipment that I actually use… When my CGM (continuous glucose monitor) is dead (more on this in a second)… But this is the second time in two days that this particular company have sent me a machine to analyse levels of stuff in my blood. I’m never that lucky with stuff like that. It confuses me.

Coming back to the CGM thing. Yesterday I declared that my continuous glucose monitor scanner, Ralph, was useless and non-functional. Today, 24 hours after a replacement was purchased and the order in the stage of being processed… Ralph decided that his touch screen was going to work PERFECTLY, even if there is still a bunch of condensation behind the plastic or glass or whatever it is.

And now, on a final note, I’d like to introduce a series of posts I will be making at some point soon (probably all on the same day because hey, my brain seems to be all annoying like that, I apologise for it in advance!) about… I’m not sure they can be called bullies, because I don’t think their destruction was intentional… But two intelligent, kind, funny… (wait, why am I defending them to you, why am I too considerate of their feelings to call them) incredibly insensitive, ignorant and hurtful individuals who made my whole world fall apart with their words. For three years I have been hurting. I have carried the effects of their insensitivity, the machetes they took to my achilles heel. Now, I want to let it out, what they did to me. I need to. They’ll never read this blog but I need closure from all of this and I want other insensitive, misguided, ignorant people to realise what comments on health and other stuff that they don’t understand can do to the person their words are about. I want people who have experienced unkindness and misunderstanding like I have to feel less alone and more understood. And this isn’t just for insensitive idiots and the people whose lives they ruin, but also for the people who watch the aftermath, watch their friends fall apart, and don’t understand why they are “overreacting” or hurting so much… Or who think they understand the emotion, but have no idea what drives it. Most of all though… This is for me. This blog is my place to work things out and let them out and feel out loud. And I need to do all of those things right now, with this. I am finally ready. And it’s been a long time coming.

As always, no way but through.

(Sending good juju and hugs to an amazing little girl across the pond who, through her aunt’s emails and her mother’s blog, has astounded me with how incredible she is!)

I Became A Human Waterfall

Don’t go

Don’t leave

Please stay

With me

You are 

The only thing

I need

To get by” – Wretch & Josh Kumra, Don’t Go

Tears well in my eyes as I push him to go home with the lovebirds tomorrow one more time, my mind secretly screaming the lyrics to this song that I listened to when I was a little younger and a lot healthier. He has health problems of his own, he is falling asleep in the chair and he admits that he wants to go home to Kent but still refuses to leave me. I don’t want to be alone 150 miles from everything I know. But I don’t want him to be in that situation either. He hesitates over and over and eventually starts talking about leaving with the others tomorrow. In front of the doctor he says he and I will be here tomorrow, but I tell him to go. I can see he wants to and guilt is an awful reason to stay. He says he wants to stay, but then admits that he has already moved a lot of stuff to stay with me and has commitments at the weekend that he simply cannot get out of but has tried to multiple times. 

Losing you is one of my fears,

But I ain’t selfish, I’ll share if I have to” – Wretch & Josh Kumra, Don’t Go

I tell him to go home and sleep. He says he can’t because it is raining but he will leave with the lovebirds. I was moved to the medical unit this evening. I am the youngest person in this bay by about 60 years and the whole place smells of pee. He looked at me when we arrived and I just wanted to go home. I cried. He put his hand reassuringly on me and rubbed his thumb back and forth until the tears stopped and I was over myself. I try to hold in my tears again as I tell him I am ok with him leaving. I don’t want him to leave at all, but I want him to be free, I want him to relax. He tells me for the millionth time that I didn’t force him to stay, that he didn’t have to he wanted to, that we’ve been over this and sorry is not necessary, that he understands how bad I feel but I really don’t need to.

Finally free from my bed on the ICU. They bring a funny red bag and an oxygen tank when they move you to a ward and it is a good job we were never going to need the contents of either because I buried both under all of my bags.
 
We sit for a few minutes and then he takes out his headphone and passes it to me. We sit together, one of his earbuds each, and listen to music. Radiohead. The Killers. It’s all ok.

The lovebirds show up and sixth form friend’s girlfriend cries when the poor old lady opposite gets confused and starts demanding that she does stuff. The three of them leave to go for a walk and return with the food I ordered. They go to leave a short while later. I almost let them go without crying. Almost. My fellow third wheel sits down next to me, wraps his arm around me and strokes the top of my arm with his thumb. I lean into him, but I’m embarrassed. He tells me to shut up and just holds me. Then sixth form friend’s girlfriend tells him to get out of the way and takes his place. She says her phone will be on all night and I should message her. My fellow third wheel tells me to call him. He makes me promise. I let them leave, (my fellow third wheel leaves me his iPad and says I should return it whenever), I pick up my phone, and I sob until I think I’m going to vomit.

I talk to one of the nurses and she just says, “I don’t know what to say. This is a complete load of suck isn’t it? You are beyond allowed to cry my darling.” Everyone keeps saying this, that I have more than enough reasons to cry. I don’t. Could be so much worse. I feEl pathetic, and this frustration makes me cry harder.

And then I walk. Five metres. A nurse holds me up and I cling to my drip stand because my legs are weak and I can’t see properly at all still (which makes me crash into a wall) but I need to do this. Now. For me. My legs shake and I break out in a sweat all over and I’m not sure if it’s dizziness or disorientation because of my sight issues but whatever it is, it is overwhelming and makes me feel like I’m going to fall to the ground. It takes all of my energy, but for the first time in however many days I manage to walk. Success.

“Hellooooo.” Dr Holler appeared shortly after I got to the ward and found me being wheeled about by two nurses on a trip back from the bathroom (yes, I finally got to pee in a toilet you have no idea how amazing such simple things are), “you’ve been bumped up from a CT to an MRI.” He announces. This is somewhere between my first and second meltdown, and I decide I’ve had enough. 

“But if you’re right about the oedema it’s going to be normal?” He gets all serious and says he really wants an MRI, it will be more detailed and safer than a CT, and he doesn’t get to order them often. He says they will sedate me for it and he will trying make it happen tomorrow at some point. Then we kind of remember I have a device implanted in my chest and he says it might not be possible with that anyway. Basically, there is no way I can leave with everyone else tomorrow morning.

But then I call my fellow third wheel and he is staying. He is going to be here all day tomorrow and if need be his dad will drive up and grab him in time for him to make his arranged and unmissable thing on Thursday. I tell him I don’t know what I would do without him, I try to make him understand just what he has done for me. We chat until I am calmer, until I am relieved. He persuades me to stay and he calms me down.

I tell him I got worried that he will never want to speak to me again because of this, even though we are already planning visits to stay with each other at uni and movie days with my dog and cooking food… He tells me that will never ever happen. He says he is too stubborn. He says that before the lovebirds leave all three of them are coming to visit me tomorrow and I don’t have a choice in the matter. I am lost for words but I throw some at him anyway. We talk for half an hour and he asks me to call him later.

The male nurse who is in charge tonight comes to see me at the start of the new shift and talks to me for ages. We share a common grumpy organ (non-functioning pancreases of the world unite!) and he completely understands. He says he feels sorry for me. He understands how difficult things are and the effect things can have. It is so amazing to talk to someone with such a thorough understanding of how to manage a condition but also how complex it can be and also what it is like to live with it. Talking to him really helps and we ramble on for ages, even talking about how each case is different. I’ve never had such an in-depth conversation with anyone about this – doctors don’t understand what it is like to live with it and people don’t understand all the medical stuff behind it. 

The ICU doctors ask an ICU nurse to keep a close eye on me as I am still on 2 IVs and unmanageable without, and she pops over to the ward to see me and starts going through my notes as she explains this to me. I listen to music and message my fellow third wheel and try to shut out the sobbing of the confused old lady opposite… And I am no longer a human waterfall. Because I am no longer going to have to face tomorrow alone. I do not know how to thank my friends enough for how amazing they are being and have been. I feel so, so awful for putting them through this.

So to all those who I call my friends, to those of you who have been here for me through this, or who have commented on these posts and emailed from across the pond…

“I don’t know why you chose me, but as long as you’re here I don’t need to know.” – Wretch & Josh Kumra, Don’t Go

Am I A Fraudulent Raisin?

I’m pretty sure I no longer need to be in the ICU. Everybody around me is coming and going and yet my bed space stays filled and I am unecessarily present in it. Today they have given up trying to stabilise me enough to move to a ward, yet I continue to get comments on how much better I look compared even to yesterday. I am weak and I sleep a lot, but I just feel this level of fuss is highly ridiculous. I feel fine. I feel frustrated at my body for not being as great as it currently feels. All of me is puffy but if I were able to move around I’m sure this issue would ease. They won’t let me stand or walk or go for a ride off the ward in a wheelchair. They won’t disconnect me from anything and I am at the stage of wellness where I feel absolutely awful for taking up so much time and effort.

My main focus shifted to finding a way to adequately thank awesome nurse and this team in general. I have genuinely never encountered a nicer, more understanding group of hospital staff. They have explained everything to me and included me in my care every step of the way. They more than listened – they accepted. They understood. They wanted to try. The consultants have been lovely and they all wear smiles and it has gone a long way in keeping me calmer than I usually would be. The nurses aren’t nurses, they are the nicest group of people I’ve ever met and they just happen to wear scrubs and spend their days maintaining life and spreading smiles. So I sent my friends to grab thank you cards when they went shopping – one for everyone, and one just for awesome nurse who I genuinely think has no idea how amazing she is and had such a huge impact on me that the least I can do is try to tell her. 

Last night, each time awesome nurse checked my blood or anything she woke me up beforehand in case I freaked out in my sleep. I appreciated this a lot. I had one nightmare but couldn’t scream. I woke up to find myself bleating like a lamb with awesome nurse leaning close to me and just talking softly. She woke me up this morning at the end of her shift to say goodbye, and I was genuinely gutted that she couldn’t just work an infinite hour shift.

My fellow third wheel has invested in a speaker so we can put it on my bed and listen to music (ICU rave!). He’s grabbed a couple of cards for me – I wanted the one for awesome nurse to be funny because I felt that was more her style. He also says he has grabbed me some drinks and snacks. My stomach is extremely grateful for this. My appetite isn’t back yet, which is very unlike me, and also concerning as I usually consume 6,000- 9,000 calories a day (I am eternally and un-satisfying hungry no matter how much I eat because of a health problem) and due to medical issues still lose weight. The nurses really are a fan of my fellow third wheel. They keep commenting to each other and me about how sweet he is and how much they love him… They also keep trying to persuade me that we should be an item, but he’d never go there and I could never burden anyone with… Myself. Weirdly enough, I have been craving the companionship a relationship offers recently, but I fear I am a raisin:

This is a serious question; how do you get a boy to like you when there’s always someone better? Like why would anyone ever pick a raisin out of a bowl of chocolate chips? This is literally my biggest concern in life I am a raisin.” – An unknown person who totally gets it.

I fear that because of my health I will never find love, and recently I just really want to hold and be held, to snuggle and be snuggled, to try to love a human and be loved in return. I have plenty of love to give but I am too scared to give it to anyone. I fear the right person will never appear. I can’t help but think this over and over. But I am lucky enough to have the best friends I could ever ask for. I will end up old and alone with a bunch of dogs.

I’m currently sat in a big chair wrapped in a million and one blankets (this is a slight exaggeration, take away 99,999 blankets and you arrive at the total I am buried under. 2. There are 2). Today’s nurse helped me into the chair and I managed to have a wash there instead of in my bed. I also got to eat my lunch here, which means I no longer eat and sleep and wash and pee (not literally, there is a catheter) all in the same place like a goldfish trapped in a bowl. She’s pushed the bed right back out of the way and dragged the chair with me in it right into the middle of the cubicle. I feel so much more human.

“You were really quite poorly when you came in, do you know that?” A random nurse says to me, emphasising her words in a way that tells me she doesn’t think I appreciate just how unwell I was. Surely I can’t have been that bad though? Or I’d be more of a mess now… Apart from the whole time delay with my vision, my weakness, and the puffiness, I’m basically unscathed by the entire experience (miraculously). But it has shaken me a lot. This was the time I almost lost. The time I should have lost. That hasn’t hit home yet. I thought I’d come close before, and I’ve been more unwell in ICU before, but this admission was nasty. This time they thought they were going to lose me before they even had IV access, the level of panic was scary, the things they were saying were scary. In a few months, I will probably start having flashbacks to being on that trolley with Dr Holler running alongside it telling people I don’t have time. I already kee reliving it in my mind. My brain fixates on the patches it remembers.

“I’d have put an I.O straight into you in A&E in that state.” Awesome nurse said last night. Part of me wishes they had, then maybe I wouldn’t be stuck here right now. If they’d listened to me straight away instead of faffing around and leaving me five hours with no IV access (because every person that took a stab at me thought they were amazing enough to get a needle into a venous system that had collapsed and refused to admit that this was an impossible task until I was almost dead), I wouldn’t have been at the point where they thought they were losing me. I can’t be angry, and I can’t complain – they saved my life in the end, everybody makes mistakes. I am eternally grateful just like the aliens from Toy Story.

The lovebirds just popped up to visit for their usual twenty minutes (so they don’t have to pay for parking) and my fellow third wheel waited in the cafe because (despite being allowed to break the rules and have three visitors yesterday) there is a very strict two visitor policy which is enforced by a lovely yet terrifying ward sister. My fellow third wheel is going back with them to clear up the caravan, then they are going back to Kent and he is being dropped off here with me. We’re messaging quite a lot so he’s here in spirit anyway.

Seriously though, I feel a million times better than I have in months. And I’m trapped in an intensive care unit despite this fact. People here are intubated and ventilated and I can breathe. I can now talk. And yet they’ve stopped even talking about moving me to a ward. I feel like a fraud. I’m scared about possibly going to London, but yesterday I was too unwell/ unstable to transport, so by the time the doctors who said they could manage everything got a specialist consultant involved and realised London was probably a smart idea, I couldn’t be transferred. I’m hoping tomorrow everything will have resolved itself somehow. I don’t want to be on a ward where I can hear doctors at the desk in front of my bed talking about who they expect to die in the next 24 hours and how pointless it is to intervene with some people. 

I’m alone, and so for now I will blog and watch and wait and hope.

OMG MY FELLOW THIRD WHEEL JUST SHOWED UP UNEXPECTEDLY THIS IS THE BEST SURPRISE EVER BYE!!

They Aren’t Going Anywhere But I Wished They Would

I sat there last night, my bags packed, with an all too familiar feeling brewing inside of me. It’s coming again. It wiped me out and left me laying in the bed and all I could think was not now, wait a week. Just a week. Let me live a little before you wreck everything again. Who knows if it will listen? I do. I know it probably won’t. My health (or lack of it) has slipped and it has slipped too far. Maybe I can hold it off for a few days. Can I do that to my friends? Can I let them watch this happen again? Can I let anyone watch this happen again? No, I can’t. And yet… I have no choice. There is no way but through this, and I will drag all of them with me because they anchored themselves into my life with the concern they throw in my direction. That is the hardest part – not the fall, not the fight, but the fact that people who are not part of this body will also suffer because of its inability to human.

As usual, I wanted to distance myself from everyone and everything as far and as fast as possible, so that when the grenade of the impending medical emergency (ok it wasn’t impending, I was very much in the start of it) went off, the only person who had to get hurt by it was me. This overwhelming and instinctive desire to shield/ save/ protect everyone I know from having to worry about me for even a second completely took over. But there was nowhere to go. There was no way but through. And, when the time comes that I can’t hold back the flood any more, when my body cannot compensate and push through something that quite frankly would bring a healthy person to their knees a little… Well then I am incredibly ashamed to say that whoever happens to be with me at the time, is going to have to go through it with me. And the awful thing is, although I hate to see the worry on their faces, hate to hear how frightened they were and the memories they retain from it all… At the same time, I hate going through it alone, which is selfish. I wish there was someone who wouldn’t feel. I wish there was someone who didn’t care that could just stay and talk and talk and talk even though I know I wouldn’t be able to answer.

I felt lousy and every part of me wanted to sleep, but it wasn’t the time for sleep. It was the time to hit a vein with a needle that wasn’t designed to hit a vein, and give myself a tiny shot of medication directly into my bloodstream – something that is far too dangerous for me to do at home (hence the lack of a suitable needle) but that was entirely necessary in order to remain at home. My dog found me. We curled up together. I went to sleep, telling myself it would be alright. But I already knew. I already know and I am so out of control and I am so helpless and yet… Not scared. I am focussing on this holiday. After the behaviour of the staff member who inspired the story I wrote for The Mighty, I am even more reluctant than normal to go to hospital. I am even more desperate to pretend that this will all be ok until it isn’t possible any more.

I was surprised at how quickly everything came on, but I don’t notice the warning signs now because I am always on the brink of this emergency and so the warning signs are my normality. I get the notification a little too late. I get the notification when I should be in a hospital safely attached to a few IVs… Except hospitals do not feel safe. Traumatic experiences on paediatric wards led to the flashbacks and nightmares I experience more frequently during and right after admissions, which make hospital feel the furthest thing from safe. When I enter the building and the smell hits me, it usually triggers a flashback. Some sounds do the same. The sensation of doctors trying to get a needle in my vein occasionally also triggers one. I shake. I am constantly on edge. I experience a terror unlike anything I could describe. I am almost physically sick. Sometimes I wake up crying having kicked the blankets onto the floor, and when a nurse tries to calm me down I see the uniform and my nightmare is suddenly reality and I lose it for a minute or two.

Things are going so well right now… Please not now… I already just found a new thing, can you just give me this one week? Please just back off and stop hurting the people I care about… I wanted to shield everyone from myself, from my health. I wanted a blast proof door to shut them all behind, and there wasn’t one.

So I did the only thing that I could think to do. I went on the group chat for this Norfolk trip, and I told everyone that something is very likely to go wrong. I asked them if they were sure they still wanted me to go along, knowing that I was very likely to end up in hospital. I tried to back out, to save them from the worry and the fuss. I said I completely understood if they didn’t want me to go with them because I would hate myself for ruining their experience and I didn’t want to go all Miley Cyrus and enter into their holiday like a wrecking ball. I told them the truth – that I would rather they could have a good time, and that they mattered more to me than I do (which is true) so whatever was better for them was ok with me.

The instant response from my fellow third wheel (because referring to him as the guy I used to fancy is totally cringe) who happens to have chronic fatigue syndrome among other stuff, and therefore totally understands the whole body being a poop thing: “Ofc it’s fine you goof! If something happens, it happens and we can deal with it!! If you go to hospital I’ll come too…” etc. etc. The conversation that followed was completely awesome and I was lost for words because I was feeling all the feels. He said he was glad to have a fellow broken person (although he got worried I would take offence because he said I was more broken), and I admitted that I was glad of the same thing too, and then we decided that we preferred the word awesome to broken… He wasn’t worried or phased by the fact that I was telling him I sensed something disastrous was going to happen soon, and when I tried to back out of going he just patiently and persistently reassured me until I no longer felt guilty about my attendance (and then celebrated his achievement. No frustration, just empathy and kind stubbornness).

Then sixth form friend joined in with making me feel all the feels. They said if I ended up in hospital at any point, they would all be there, they’d stay with me all night, they’d take it in turns to be with me… Of course I’d never let them do any of that, but I aborted the alternate plan I’d been compiling in my brain (I was going to tell my parents I was going to Norfolk, and tell my friends I wasn’t allowed to go to Norfolk, then book myself into a cheap hotel somewhere near here so I could malfunction with nobody knowing and hopefully just sort of get a taxi back to here a few days later with nobody being bothered).

I changed the conversation to point out that hopefully none of us would have any reason to go anywhere near the hell that is a hospital, and that instead we’d have an awesome time on the beach and stuff. The diversion worked. I hope it’s what actually happens. I can save this.

They are getting here to pick me up soon (and in true student fashion I’ve spent the past hour completing the logo for my t-shirt shop and designing the website… Which was not the plan!). I’ve no idea what I’ve packed, I just grabbed everything. Pretty sure I’ve probably accidentally packed my dog or my little brother or something utterly ridiculous. But I definitely have my smile.

Anyway. Somehow this will be ok. I need this holiday. I need to be around these people for five days. My fellow third wheel has made a playlist with over 720 songs for the journey there and back. It will be ok. It will be beyond ok. There will be no hospitals. I will fix it.

Another friend (the one I am going to Edinburgh with) also messaged me last night and made me feel all the feels.

They all refused to go anywhere. For their own sakes I wish they would. For my own sake, I am incredibly glad (and surprised, and shocked, and confused as to why) they refuse to distance themselves from such a… Pain in the butt.

No way but through.