I’ve been missing from this blog for months, I know. My heart (Skippy) seriously deteriorated, and he took me down with him. 4 months ago, I couldn’t lift my head off of the pillow. Skippy simply wouldn’t let me. I spent 2 days in February drifting in and out of consciousness alone in my room before finally managing to stay “with it” for long enough to reach my phone. I ended up in hospital, and I don’t remember the days that followed, mostly because I couldn’t stay awake, and when I could, I was very dizzy and spaced out. I wasn’t really with it enough to be scared. Retrospectively the whole thing is terrifying (it was also a very bad time to have PTSD due to events in hospital so horrific several people could lose their jobs if I spoke out about them).
Nobody knew what to do to help. There were ambulance rides between hospitals, and there was, it felt, a loss of hope. We took drastic measures, and we didn’t take them lightly. Because of delays through the NHS, we were forced to use the facilities of a private hospital. My family and I couldn’t afford that, but an incredible person I met through this blog started a fundraiser that covered 1/3 of the surgery costs. On 29th of March, I was put to sleep. I woke with a new pacemaker (Pablo). My heart now won’t beat for itself again. We’ve destroyed almost everything that could tell it to, and each chamber is now paced individually. I still struggle with this – I don’t feel I was worth the effort, let alone the cost. I have to pay my parents back, and the savings I had spent so long gathering to be able to fund a service dog are now nowhere near enough.
Three months after that surgery, I can walk again (not far, and my legs and heart protest with each step, but it’s still incredible). I am currently in Sheffield staying with a friend who remembers watching me have a cardiac arrest the second time we met. Prior to that, I finally met the incredible blogger who helped to fundraise my surgery, and she was so much lovelier than I could even have hoped for. Three weeks after the surgery, I got to see Bastille in concert. I sat with their friends and family, and got to meet the guys themselves.
On Thursday (12th July) I confirmed my place to study a masters in cardiovascular science at prestigious university in London. Research that has taken place over the past few years has given me the life I have now, offered solutions where there were none, and developed the techniques that played a part in that. But there’s still so much more to do in terms of research. I want to help make sure that other people’s futures differ from my past. If I can spare just one person from just one element, that’s enough.
I will be graduating on the 26th of July with a 2:1 (the lecturers who have contacted me, and medical professionals, and even my family, are impressed with that, but to me it is a bittersweet moment – I look at that grade and see a reflection of my health, not my brain). I had a mini stroke in May halfway through exams (as if there wasn’t enough stress already). But my health never has been, and never will be, and excuse to me. It isn’t me. It isn’t who I am. It will never define my capability. I’ve written thank you letters to the people who have played a part in getting me to where I am now – from police officers who found me on a train station floor 3 years ago, to lecturers, to cardiologists, to friends, and to paramedics who have carried me down flights of stairs but stayed in touch. My degree felt, and feels, as much theirs as mine. Some of them cried when I told them my news because they were so pleased. Most were stunned. We all celebrated.
I even celebrated as I was taken down to theatre. On the 12th of July I not only accepted my masters place, but that night I ended up in hospital. I had emergency surgery on Friday 13th, and there’s now an open hole in my abdominal wall that will take a couple of months to heal. My immune system bailed on me and let an abscess develop at my infusion site, and some surgeons had to step in because antibiotics aren’t very effective when your immune system is bailing. So I’m 140 miles from home, in a lot of pain, and being in hospital was very, very traumatic (was given none of my regular medications, including heart meds and pain meds, for the entire admission. Was given no antibiotics until the morning of the day I was discharged, they seemed to forget I have type 1 diabetes, had no idea how to use a portacath so pressured me into letting them stab me unsuccessfully…). But I am out of hospital. I am alive. I can walk. I feel beyond lucky.
While I was high on morphine post-surgery, and between the flashbacks and nightmares that left me sobbing and shaking, I decided I wanted a hamster. I found an 8 week old hamster that the lady hadn’t touched for 2 weeks and didn’t want. He didn’t have enough bedding and the cage floor was almost bare. Whilst high, I named him Dash Stille, and yesterday my friend took me to collect him/her.
I can’t afford a service dog, which would genuinely change my life so much. But now I also can’t afford a place to live, and my overdraft is currently paying for my food. My parents refuse to subsidise me until I at the very least have a job, but even lecturers at university appreciate that my health is nowhere near good enough to sustain any form of employment right now, and discouraged me from even thinking about employment (my lecturers also call me “Superhuman” and one has bought me a cape for when I graduate). I want to be financially independent. I really want more than anything else to have a job. I want my own flat, and to get a puppy and train him up as a medical and mental health service dog so that I can be more independent and my health will be more stable. I have to somehow pay my tuition fees but am hoping I can get a loan for that. I refuse to live off of the state, and I have no credit history so can’t take out a loan. There’s currently an open hole in my side that HURTS more than the nerve pain I have left over from so many heart surgeries, yet my financial situation is stressing me out more. Money shouldn’t make the world go round, but it does. I have been too unwell to attend a single lecture in my final year of university, I know that attending labs and lectures for my masters will wipe me out and a job on top of that will break me.
But I’ve got a little hamster guy (so I have a focus and a distraction and something dependent on me which means I have to stay on the planet no matter how awful the PTSD gets) and I am out of hospital and alive. No idea how to keep doing this. Left a lot of awfulness out of this post. Sure a lot more will follow it.
Sometimes you stumble across moments in life that make your thoughts stop and your mind boggle. They are weird little moments where a realisation hits you, and things slip into place – impassable mountain ranges falling at your feet as the tectonic plates of whatever you were facing move apart. They are moments that you don’t reach alone. They are moments that you never think will come, and they wrap you in the security of knowledge… a new knowledge that not everything will be ok, but something will. This something, the something that relieved the pressure… I thought it was the thought of running again (a journey which I have started blogging about here – please feel free to check out my new blog if you haven’t already, any support at all is much appreciated). Being given the go-ahead to try to build up to some form of exercise again took the tension out of the rugged landscape of my mind, and, although it didn’t flatten any mountains, it gave me the equipment that I’d need to scale them, to face the future no matter how much I didn’t want to. It made the volcanoes that had been spewing suicidal thoughts become dormant, prone to quiet rumblings and occasional steaming instead of violent eruptions that killed my determination.
But I now know that people do that too. A small part of me remembered that they could, because my uni-parents did exactly that last November. They flattened landscapes, and when I fell through the cracks in rock bottom that opened beneath my feet, they walked through the fiery magma alongside me… But it burned them, and like everyone I’ve ever depended on, they backed away and I was left alone. I’ve never thought of myself as somebody worth standing by, as somebody who anybody would want to be there for. I am a drain, and I am fully aware of that. I sap life out of all those around me, and I watch it in their faces. It kills me to watch it, and being unable to trust tears me apart… so I withdraw. I retreat. I end up even more alone, and I feel even more of a burden, and it spirals and spirals as I grow more and more distant.
Along with the amazing extra family I have gained across the pond (the best thing that has come out of this blog – you know exactly who you are), two friends have been there throughout this summer. Neither of them really knew how to be, neither of them really understood or appreciated the depth of what I was going through, but for some reason they stuck by me; and when the downward spiral began, although I still ended up in some very dark places without their knowledge and nearly did some very drastic things, they unknowingly pulled me back a little at times, when there something left for them to save. A lot of the times the things they were trying to talk me through were bigger than they were. A lot of times my fellow third wheel was miles off the mark and I became frustrated… but they were willing to do what nobody else was – be there. Try. Try to find words, give up finding words, join me in the crapness of it all, laugh and distract and push me to talk about things that I never can to them. Even when I didn’t ask (knowing that I never would and didn’t know how to). Even when I pushed them away. That isn’t enough to save a person. It isn’t even enough to make things feel better, until you’re through the worst, and you’re past the moment that I described in the first paragraph of that post. And then you look back and pull all the good from the wreckage that nearly took… you.
And today, with the thought of running again playing on loop over the roar of the sensation of impending doom, I had my moment. Today I was reminded how amazing it feels to not have to face physically go through things alone (I am at the stage where nobody knows the full situation, and I no longer want them to. Nobody is physically there, and I no longer want them to be. I prefer to keep them at an arm’s length from the things that are tearing me apart. Like I said, I withdraw. I don’t talk. I’m not good at it. It’s the whole reason I need this blog). When you let the big things go, you can appreciate the beauty of the little things. When you step out from underneath the shadow of fear or dread or somehow make it through the feeling that the only way to get through is to never meet the future at all… Life gives you this brief moment to inhale. To breathe. To feel anything at all, one more time. And the strength that you had to build to hold up the weight of everything for so long… It makes you a force to be reckoned with. It makes you do stupid things, like decide you’re going to run a marathon next year. And you’re hollow, and you’re hurting, and you’re numb and you don’t even know how to feel again let alone what to feel, until someone picks you up and pushes you on.
Uni Pal pushes me on. A lot. We made a little pact to train for a marathon together (actually, she told me I had no option) and the second slightly tipsy me told her how I’d been feeling lately, she made me promise to tell her any time if I felt like that again. I said yes and meant no. But today we were messaging. And she asked about my (minor) surgery next Wednesday. I’m going through the whole thing alone, and am not allowed to leave the hospital alone afterwards (because hey, general anaesthetic). They told me to take somebody with me. But I have nobody to take with me. My mum already made plans with her friend… Not that I’m even really sure I’d want her there. I never usually have anyone there when I go into surgery, or beforehand. I just message people when it’s over, and if it’s something I’m scared of, I say a little insurance “you need to know how much you mean to me” the morning of the surgery. I’m sort of just used to doing health stuff by myself. I’m used to carrying the weight. I’m used to the emotional injuries inflicted by being crushed and buried under that weight. And then Uni Pal asked if anyone was going with me, and I said no, but that she didn’t need to worry. She asked what time Id be getting there, because she lives so close to the hospital and can drop by before she starts work at 9, and I told her not to worry because hospitals. Eventually, after asking and asking she just put,
“And also 7am is not that early, see you there” (and then the banana emoji, because as I mentioned before, when I’m an idiot she calls me a banana, so we call each other banana pals… it’s weird but hey I like it)
“As long as I leave by 9ish to be at work, that’s absolutely fine”
My response was a shocked face and an entire line of crying faces. I think that sums up my brain’s reaction rather well. I didn’t cry, but I had a moment. A moment like the one I started this post by describing.
“I don’t even know what to say to you, you” (and then I put the banana emoji, because I thought she was being stupid to burden herself with me) but I couldn’t even express what was going on in my mind, the complete shock. The… nice… shock. I tried again
“I… What.” Nope, I could not words.
“Don’t be a (banana) of course I’ll be there!!” and the message finished with “but it’s now in my diary so”
And that was it. Genuinely, that was it. There was a huge tectonic shift inside of my brain and all these mountains were flattened. I wanted to dive into my phone and hug her. I smiled, one of those great big uncontrollable ones. I stood up. And I looked back from a different point of view over the summer that almost completely broke me. I don’t know what I would have done without my Uni Pal.
And this isn’t the post I was supposed to write. I meant to say this:
After yesterday, I view my little brother as an actual human instead of an extension of his games console, and it was just the two of us home alone with my dog, so I decided to order us both pizza for lunch with some of the last dregs of my student loan.
Uni mum replied to the message I sent her 8 days ago, asking if tomorrow would be a good day to FaceTime and also enquiring as to whether or not I have my exam results yet. Hearing from her made me STUPIDLY happy, and Uni Pal was stupidly happy for me because I had to share my stupid levels of happiness with her (she knows uni mum is one of the only two people on the planet that I trust and can talk to about ANYTHING. She’s flaky, and she drops me like a hot brick for no reason and ignores me for months at a time, but when she’s there again none of that matters and my brain gets all… Yeah).
Just as I was tucking into my half of the GIANT pepperoni pizza we ordered, one of the hospitals I go to in London called and asked me to go there today or on Monday so that they can check out Skippy (my heart) before I have my general anaesthetic on Wednesday.
Someone I met through this blog, who makes me feel like part of her family, asked me to be part of a project she is starting (we also hope to some day write a book or two together) and I was SO touched because I know the story behind it and the amazing little girl that has inspired it all, and I’m honoured to even have been thought of.
I started packing for uni last night, and immediately found myself in HEAVEN. I got so ridiculously excited and I was messaging my fellow third wheel and he got excited with me (especially as he will be coming to stay with me at times), and then we both got excited about the mini-breaks we have coming up, and we just had random conversations until the early hours of this morning (we do this most nights, but last night we were both just in super good moods… Until the end). I found a couple of self-help fill in books while I was sorting my stuff, and discovered a heavy repetitiveness of what was getting me down. There were three things (number 2 was most consistent, number 3 was only when I was in my parents’ house).
My health is so much worse than anybody knows, I might die, and nobody knows. I don’t know how to cope alone and I can’t talk no matter how much I try to, and I don’t trust anyone.
“I want to run/ swim/ sail again” “What if I never run again?” “I need to go for a long run, that’s all I want” “I miss sport” “I can’t do any of the things that made me who I was, and now I don’t know who I am” “I wish I could run” (didn’t realise quite how much of a deal this was to me until I say stuff like that on almost every page, which is why running again is going to cause such a transformation in my mental state). On one page it had a huge box that said When was the last time you were happy? and all I wrote was “Last time I went for a run”…
My dad (technically stepdad) makes me hate myself. I’m a huge disappointment to him. He hates the very fact that I exist. He doesn’t talk to me unless it’s to criticise me or to shout. I will never do right by him. He doesn’t even need to pick holes in me any more I already hate myself on behalf of him, over time he’s taught me that I am nothing, without even having to say the words. On one page it said, Name things you’ve never done (but want to). I wrote the expected stuff, like “get a degree” and “learn to surf” and “go on a camping holiday” but I also wrote “Feel good about being me” and “Make a difference to someone in a +ve way” and “Feel part of a family”
Anyway, I apologise for boring you with such slushy ramblings, but today I was blown away by the amazingness of human kindness. But yeah. Good times. Really good times. I’ve still been unable to start my walking milestone for this month because my body is (somehow miraculously over its acidosis when it really shouldn’t have even got through it without hospital intervention but) still wiped out and rather unwell because my blood is all out of whack (in account of the fact that I usually end up having a bunch of other IVs to put all my other levels back to… safe… and that didn’t happen this time because I couldn’t face hospitals).
One person today offered me pity. They seem to think my situation right now sucks. It doesn’t. Right now, in this moment, there is so much good to be found on the faces of the mountains I am still trying to climb. I am empty, I am fragile, I am downtrodden and struggling to cope at all. I am lost and I am trying so hard to find… anything. But there is today a stunned disbelief, a whisper of reassurance. So much is not ok. But something is. And I plan to focus on the “something” rather than the “so much”. Force positive thoughts until my brain accepts them and starts generating them spontaneously, is my latest logic.
I have a whole new level of respect for 13 year old me. Yes she had hiccuping health, and was blissfully unaware that she was going to end up hospitalised for months and months at a time, but I’m pretty amazed at what she was capable of in terms of physical activity. I’m impressed because today 20 year old me got into a 25m pool for the first time in years, to attempt to swim. And she struggled, and she hurt in ways swimming had never hurt before, and she was pathetic, but hey, I SWAM. FINALLY, I SWAM AGAIN.
I am on top of the world.
“Feeling like a hero, but I can’t fly
No, you never crash if you don’t try
Took it to the edge, now I know why
Never gonna live if you’re too scared to die” – Goo Goo Dolls, So Alive
Swimming was always something that was so effortless to me. But I gave it up. I had to. Eventually I couldn’t breathe while I was swimming and would feel like I was drowning without having inhaled any water… And so as I grew older, I never got the opportunity to push myself until I couldn’t lift my arm, until my whole body was searing and screaming at an effort it wasn’t used to… And prior to that, when I was 12-13, my body was used to the effort. I ran, I swam, I sailed, I mountain biked for miles, I played on our trampoline… I was that person who could get into a pool and swim laps for hours without stopping and still be faster than the adults. It didn’t hurt, I was out of breath but not uncomfortably. And I never realised how impressive it was that a body could do that. I never realised how much effort it took to swim. Until today.
I didn’t think I’d manage a length, given the fact that walking 1/4 of a mile makes my heart freak out so much I almost pass out and then have to sleep for hours (but hey I CAN WALK 1/4 OF A MILE AGAIN NOW WHICH MEANS GOODBY WINSTON WHEELCHAIR CAN WE ALL JUST PAUSE TO ACKNOWLEDGE HOW GREAT IT IS THAT I CAN WALK MY DOG AGAIN?! Who cares if it’s short lived, I’m living now, today, not in the future… And right now, I can walk a little way even if I pay a huge price). I told myself I would do gentle swimming. My brother and nephew were messing around in the rapids and on the slides, and were nowhere near the fitness pool. I was alone, just me and the lane ropes and one other person in the fastest lane (yeah, you knew I wasn’t going to do gentle swimming, come on, it’s me. That intention did not go to plan).
I had underestimated how great it feels to swim. I kicked off of the wall and the water rushed past me and I was instantly home, suddenly back before my health dragged me under (pun intended). I started with freestyle at a pace that I thought was gentle and slow. I had to stop after one length. Skippy (my heart) was in shock at the sudden expectation of him. I’d taken it easy in comparison to what I’d been able to do when I was 12, but I was so out of breath you’ve thought I’d just sprinted 200m at race pace. I switched to breast stroke, did another length, and had to stop for another two minutes before I was in a fit state to swim again. But I was lost in the moment. It was difficult for me to accept that my best was so far below my 12 year old self’s average. My brain still expected the same level of performance and struggled to accept that I was no longer capable of that. But I wanted to get as close as I could. I has surpassed my own expectations and managed to swim a length, and I was kind of curious as to how far my body would go. And so I pushed it. My “easy” breaststroke was faster than the other person’s front crawl (when I say easy, I mean it would have been for 12 year old me, but killed the 20 year old version).
I ended up pushing myself until I was doing one length in 20 seconds. This is an appalling pace, and it was almost cringeworthy for me. I was back in the mode of a training session, where we used to swim back to back lengths and do 1,500 metres just in the warm up. It took me 2.5 hours to do 52 lengths. I spent so long sat at the end of the pool. About 20 lengths in I should have stopped. My muscles were searing. As I got to the deep end, I felt a pop in one of my hamstring tendons, and a ridiculously loud cracking sound travelled through the water. It hurt a stupid amount. Years of swimming and I never hurt my knees or my legs. To top it all off, it was my right leg, which already has a pulled/ ever so slightly torn hamstring much higher up, and a very grumpy patellar tendon. I stopped kicking and swam to the end of the pool, where I stopped to assess the damage. “Ah, was that cracking noise your hamstring?” The man who I’d been swimming behind paused on his next lap and nodded towards the leg I was holding. “I’d know that sound anywhere trust me, something’s torn.” He said in response to my confused look. It didn’t hurt so much when I stopped swimming, so I kicked off to swim again, came to do breast stroke kick and… The most ridiculous pain, and the weird popping sensation again (only much milder this time).
My arms and shoulders, even my wrists were sore and aching to the point where I could barely lift my arm out of the water when I switched to freestyle to try to finish that lap of the pool. But pain wasn’t going to stop me. I had no intention of stopping swimming until I was physically unable to do so and in my mind the only muscle that would bring that about was my heart. And I wasn’t even listening to Skippy. My heart rate after one length was well over 200. It was so fast that I counted 112 beats in 25 seconds and then lost count. There was an aching in my chest, but the pain of my newly messed up tendon thankfully shut up the crushing ache spreading out to my shoulder, and so I pushed on.
I stopped for a long time between laps. This gave me time to watch the swimming lessons taking place in the end lane. And that was what nearly broke my heart because I saw the sweetest thing. There was one swimming teacher in his late twenties (happened to be very attractive) who was just amazing. There was a little boy in a wheelchair. He can have been now more than six or seven years old, and he didn’t have enough muscle tone to support himself. The swimming teacher took his top off, walked over to the little boy in his wheelchair, and picked him up as if her were his own child. They both broke into giant grins, and this little boy just hung limp and like a rag doll, so light the swimming teacher could carry him with one arm. The swimming teacher climbed into the pool and let the little boy float on his back and started dragging him around in the water and helping him do flips and just playing around in the water while his mum watched. The little boy laughed and cried out, and the swim teacher kept having to take him over to the side of the pool and lay him on his stomach and rub his back while he choked, but he even did that so affectionately I was blown away. He put the little boy on his hands and knees, and the boy’s legs shook uncontrollably and couldn’t hold his weight, but he threw himself into the water towards the swimming teacher, who took hold of him and lifted him above his head smiling. It was so lovely to watch the two of them together, to see what this swimming teacher had done for a boy who on land was stuck in a chair. And it also made me think well if he can swim, I’m going to swim.
I told myself I’d stop at 30 laps. Then 40 (by which point I could hardly move, and had gone a little blue because Skippy was freaking out, but he was only skipping the occasional few beats so I decided he would just deal with it). Then 50. Then 100. I gritted my teeth through the pain (and believe me, by this stage there was a lot of it). My tendon kept having the occasional twinge, so I mostly swam with my right leg training behind me. On my 52nd lap, I started to swim breast stroke, kicking with just one leg. Halfway through the length, I decided to kick with my right leg too, because it hurt to keep instinctively trying to do breast stroke kick with a straight leg. This was a mistake. Another crack shot through the water like a gunshot and that time I knew it wasn’t good. I stopped at the end of the pool, my fingertips blue and feet blue, my lips tingling, my heart beating too fast to count… And it was all so worth it. I stayed there for ten minutes before my heart could deal with me standing up on dry land. I hobbled to find my brother and nephew, my semitendinosus tendon screaming at me whenever I moved my leg in a certain way. My body hated me. For two and a half hours at me it had been screaming at me NOPE, and I had spent just as long screaming back SHUT UP YOU’VE HELD ME BACK FOR TOO LONG. JUST LET ME HAVE THIS ONE SWIM.
“My body tells me no, but I won’t quit, cause I want more” – Young The Giant, My Body (this song was my anthem all the way through sixth form when I took risk after risk and achieved things nobody ever thought I would, like making it to my exams, and getting into uni…)
I don’t know how I used to swim so far so effortlessly. I don’t know how I used to swim 5km without stopping, or just get in a pool and swim 300 lengths while my family messed about diving to pick things up off the bottom of the pool. I hurt. I ached all over afterwards – my abs, my thighs, my wrists, my shins… There wasn’t a single bit of me that didn’t ache. The breathlessness never left, although to be honest that was there when I woke up this morning. And to be even more honest, by the time I went to bed last night my mother (who is a midwife) had told me I looked 7 months pregnant (the joys of ascites) and my ankles and shins were really puffy. Either my kidneys were being stupid and retaining water, or my heart was being stupid and not moving my blood (which may have annoyed my kidneys in turn actually). It still didn’t stop me today.
I forgot what swimming is like. I literally think of nothing while I swim. Nothing. It completely cleared my mind, and that was heaven, to have no worries, no stresses, no judgement, nobody talking to me or looking at me (other than the lifeguard, who was extremely concerned at the way I looked). It’s my own little bubble. I’d forgotten how amazing it felt, I just knew it would be amazing. I can see why I used to love it so much (I used to dread training sessions in the end because my heart couldn’t deal with them, but until that stage it was HEAVEN). I can see why my mind has been fixated on the idea of getting back in a pool and swimming again. And it’s all out of my system now. So much frustration and the emotional pressure building inside of me has been released. Because that’s what swimming does. It sets me free. It makes things bearable. It wrecks my body in the process, but that was a sacrifice I had to make today, and I’m glad I did. I don’t think I will be going to swim in the olympic pool every day before lectures, maybe only once a week, I don’t know.
My tendon is currently throbbing (mostly on the inside of my knee and where it inserts into my tibia (shin bone))and my leg is swollen over the top of it; the breathlessness hasn’t left me, I have a wheeze, water keeps catching in my throat as I exhale and crackling as I inhale, and I feel like I’m breathing soup; the ache in my chest will not leave and my heart is still beating at an alarming rate even for it, (my resting hr when sleeping is 100, laying is 110-130, standing is… Higher) and after several hours of 180bpm while slumped on a sofa, I feel completely rubbish and my hands and feet are pale and tingly, and my stomach, which had returned to its normal flat self, is now so distended I look like I’m pregnant with triplets (Seriously, kudos to my former self for being able to run 5km, then do about 5 times the distance I swam in less time than I was in the pool!). I’m a little bit wrecked, basically.
But I’d do it again right now. Because my heart did so much better than I thought it would, and mentally I feel so much better for that swim. Swings and roundabouts, right? I’ve never been so happy to be feel a little pants. I’ve felt so, so much worse and to me this is nothing, this is worth it, this is liveable and I can deal with it. This wasn’t worth it, it was more than worth it.
I was lost, I was in such a bad place, and now, on the day the Olympic Games start, I got back to sport, and sport saved my soul all over again.
And yes, I feel on top of the world, because I overcame something I never thought I would overcome to achieve a dream I thought would never be achieved. I overcame myself. I overcame my health. I took a huge, huge risk and I was an idiot, but it more than paid off.
I feel a little invincible, and also totally not and completely humbled by my incapability all at the same time. But I am happy in a way I had forgotten how to be. I am not a waste of space. All is not lost. I am someone. I am good for something. All those gallons of water were powerless against the fire of determination inside of me. And it has completely changed my outlook on myself and of life.
“Time to raise a flag for the cease fire
Staring down the hole inside me
Looking in the mirror, making peace with the enemy” – Goo Goo Dolls, So Alive
Never underestimate the power of a pool.
No way but blue.
“Feeling like a hero, but I can’t fly
No, you never crash if you don’t try
Took it to the edge, now I know why
Never gonna live if you’re too scared to die
Gonna disconnect from the hard wire
Time to raise a flag for the cease fire
Staring down the hole inside me
Looking in the mirror, making peace with the enemy
I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to
I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to
Open up my heart like a shotgun
Blinded by the light of a new sun
Get up, get up, get out and get done
For the first time I feel like someone
Breaking down the walls in my own mind
Keeping my faith for the bad times
Get up, get up, stand like a champion
Take it to the world, gonna sing it like an anthem
I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to
I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to
I am no man of steel
I have no heart of stone
Don’t tell me how it feels
I’ll find it on my own
Never gonna live if you’re too scared to die
I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to
I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to
I’m so alive, I’m so alive, I’m so alive” – Goo Goo Dolls, So Alive (This is my song for today. I first heard it about a week or two ago and I LOVE IT).
I am sorry this post was so long and dull and awful. But I’m not sorry about all of the stuff it contains.
Like I said, no way but blue (unless you’re swimming in a lake or a river or the sea… In which case the colour is debatable).
I send another message to check that I am understanding the situation right. Once again I am told it is no bother, that I am no bother. I am wanted, I am welcome, and my company yesterday was greatly enjoyed. I am so busy feeling all the feels that I can’t help but smile as I hold my phone in my hand and stare at the words on the screen.
Aunty Cousin messaged me out of the blue this evening to tell me that the offer she had made yesterday (that I can go and stay with her and her family when my family go on their holiday, which I am being discouraged from going on thanks to the fact that my body is a poop) still stands. Yesterday I went along with it kind of sadly because I thought that she was just saying it to be nice; I expected her to be like the people I believed this year at uni that turned out to be flaky and tore me apart as their loyalty crumbled. And then, unprompted, Aunty Cousin sent a message saying how nice it had been to see us all and that I can go to stay with them anytime. So I checked over and over and over.
And eventually I realised that she wasn’t saying it to be nice, she was saying it because she meant it. She told me that other than the end of this week and some time in August (when they are on holiday) I can go and stay with them whenever I like. I’m not sure my mum was very impressed, but I’m 20 so she said I can go where I want when I want (erm. Not really while I live here, but hey). She warned me that Sidcup is a kind of boring London suburb, but I’ve been there many times and to be honest, I just want a break from this house, especially as my 16 year old nephew is moving in FOR TWO YEARS this weekend and my mum is already calling this “his house” and “his home” and “his room” etc. I mean, I love him to pieces and I just want him to be happy, but my little brother doesn’t want to know me when my nephew is around, and my parents have yet another perfectly healthy young person to compare me against. I’m majorly insecure, I don’t feel like I belong here and I feel that is about to be significantly magnified.
I tried to speak to my mum about how difficult I’m finding it to be in this house lately. I wasn’t rude or offensive, I just said that I missed feeling and being treated my age and that neither of those things seem to be possible in this house. Plus, my dad and I seem to be experiencing some friction at the moment – he is being all petty and super moody because so much of my stuff is currently in this house. He wants to take a bunch of stuff down the tip and to be honest I think a huge part of him would take me there if he could. It made me feel so awful this morning that I wrapped my pillow around my head and pulled the duvet cover over my head and just curled up on my bed for a few hours until the awful sinking feeling that pulled all of me into a great big pit of feeling out of place and unwanted lessened enough for me to get over myself. I couldn’t look at them the same after that. Both of my parents are tense with me at the moment. I don’t want me and my dad to go back to the way we were, I want out of here before that because honestly I can’t survive feeling the way it all made me feel again.
Through it all I messaged my fellow third wheel. He was at a hospital appointment in London about his chronic fatigue that was less than helpful, and had missed his train there so messaged me throughout the entire journey until he arrived late. He’d had a crappy morning. He loves dogs. I invited him round to hug my dog. He leapt at the chance. So in the afternoon he showed up, and he hugged the dog and we sat and just chilled and chatted and chatter. Before that, we spent most of his train ride home talking about chronic illnesses and invisible illnesses and how people are so judgemental and ignorant when it comes to the effect they can have on people. It was so nice to talk to a human that I can meet and hug and talk to person to person who… Gets it.
While he was here, I checked my university to find out (off-record and unofficially from the lecturer I emailed who doesn’t think she was meant to tell me) that they have found the missing 2/3 of the exam that I “failed” only to find out that I did, in her words “very well” and she said I had no reason to re-sit the exam but should double check as my grades still haven’t been upgraded on the system. She congratulated me and my parents asked me why I wasn’t angry over and over again. But what good would being angry do? It doesn’t matter where my paper went or who messed up, it doesn’t matter that I nearly dropped out and broke down and totally fell apart over the thought that I was so stupid as to have failed so badly… All that is in the past. All that matters to me is that I can move on from that now, why cling to it? I can be nothing but grateful, because it is all over, and I have passed my first year (by passing the required number of modules – 6 out of 8) before I even sit the two exams that I missed. I was happy and relieved and grateful. Nothing more. That’s where I differed from my parents this afternoon.
We talked about our day out on the boat, and he had also noticed that my dad did nothing but criticise me the entire time, and only spoke to put me down or tell me I was doing something wrong or attempt to humiliate me (genuinely, if we were at school, he’d be THE BIGGEST BULLY, and yet, people think he is THE NICEST GUY. He is. It’s me. I’m the problem. I really am). I freaked out at him a little about my hospital appointments tomorrow, one of which my mum is now adamant that she will be attending. Normally she stays well out of my health stuff, but suddenly she is INSISTENT upon crashing this appointment, and it is the one where I really wanted some alone time with the two members of my team who I will be talking to. He said I can message him through the entire thing, and later said that afterwards I can talk to him and learn how successful his attempt to start learning guitar tomorrow has been (he asked if we can meet up with out guitars so I can teach him to play, we decided that this needs to happen). He was also horrified that I’ve only just discovered Red Hot Chilli Peppers (and, may I add, FALLEN IN LOVE with their music).
After my fellow third wheel left, I slipped back into the feeling I had been overwhelmed by all morning. I felt out of place, I felt pushed out, I felt unwanted and like a huge bother. No matter what my mum may say from time to time, attitudes and actions speak louder than those words ever will, and I get the feeling that the guy I call Dad seriously wants me out of this house. I felt so tense, afraid to put a foot wrong, knowing that in his eyes I can do nothing but that right now, because I’m not a miracle worker.
Weirdly, my little brother somehow stopped playing video games long enough to watch tv with me, and we ended up wrestling each other, which started on the sofa and spread to the rug. I haven’t wrestled him for about three years, and at that point I’d been let home from hospital for the day. I was still strong, still lifted weights and ran laps around the outside of the hospital when they disconnected me from my IVs for half an hour every week or few (and ran up and down the corridors with a drip stand, or used it as a scooter, when I was tethered to IVs). I was still fit, basically. He was 10 then, much smaller than me and a complete weed. He’s now as tall as me, his voice is broken, he’s not so much hit puberty, more like broken through the other side of it, and this time he put up a fair fight. The whole aim of the fight was to hold the other person’s knee. It was pretty hilarious. We were in hysterics the entire time. He wasn’t afraid to break me (my parents most definitely haven’t told him about any of my health stuff, if they have he’s a heartless person who doesn’t care and feigns confusion when I accidentally mention a bit of it), he wasn’t afraid to be near me or to mess around and I loved his ignorance of my health. To him, I’m still me, I guess. He saw a person I lost a long time ago.
Edinburgh looks like it is not going to happen this summer, and that completely sucks but can’t be helped. I blew the plans the first time for my friend and I by being all unwell, and now she’s sort of triple booked for the weekend we were planning to try again, but these things happen, don’t they? She told me far enough in advance that I wasn’t any worse off and hadn’t booked anything, and is now being completely silly and trying to rearrange everything, which I’ve told her not to bother with (but like I said, she’s silly, and so she refused to listen). I genuinely don’t mind though. I would have minded if she’d left it until last minute and just expected me to get the message, but even then I wouldn’t have been annoyed. I don’t really do that. Not my style. I have an awful lot of MUCH BIGGER fish to fry. She’s one of the nicest people I’ve met (so stop feeling bad! Yes I’m talking to you and doing that second person address thing that you hate. You were so silly I had to so there! But your heart is pure gold and I more than appreciate your consideration and kindness).
I’m dreading tomorrow and I’m dreading being even less than the third best under 50 year old living thing in this house (out of the 2 humans and chocolate labrador that currently fit into this category), and I’m a bit disappointed by Edinburgh (although Edinburgh is overshadowed by much bigger issues in comparison to which it becomes highly insignificant)… But there were positives. I enjoyed the company of a good friend. i hugged my dog a lot. And when Aunty Cousin messaged me it became clear that when she said she cared and that she wanted me around and that I am always more than welcome because it would be nice to see more of me… She meant it. She actually meant it. She was being serious.
I’d tell tomorrow to bring it on, but it might take the challenge seriously and I DO NOT WANT THAT. I’m so worried about my second appointment that I’m already shaking at the thought of it. I will have a lot of nightmares tonight which will stop me sleeping even if I manage to calm down enough to sleep. PTSD is a dick. Just saying.
Anyway. No way but through. And to “The Alcohol Fridge” – I’m half way through a cider, and I’m not proud of it, but I know that alcohol is the only way I stand any chance of sleeping tonight. I am really not dealing well right now. I need to fix this. Soon. But first, I just need to get through the worst. I’m well enough (haha, totally not well, but no longer heading for an ICU at a hundred miles an hour and unable to stand, as I was for about a month and a half before this most recent admission – “When Health Hiccups Combine” – heart and other hiccups did not need to join forces and put me in a wheelchair. Not cool body, not cool)… Where was I? Oh yeah; I’m well enough that I am finally able to feel instead of just focussing on injecting IVs and using my scientific and medical knowledge to keep myself alive for a lot longer than should have been possible without the help of a hospital. And there are a lot of feelings. And the issues are finally sinking in and hitting home, all the cranes merging and hitting me at once.
Things at the moment are not fun in a health sense, they are serious and they would get to anybody, especially the added and constantly visible (literally) issue of my vision issues; but personally things aren’t great either. Being away from uni and independence is difficult, switching it for the attitude of my dad at the minute is even harder, and feeling like a kid again is not helping. I feel belittled and beaten down and my self esteem is lower than it has beef for a while (and here we go again, hiding behind the surface issues because I can’t even blog about what lies underneath. Good one brain, good one). Little things are pushing me over the edge and actually it is just because the big things are taking up all of the space and I can’t face them to kick them out of my mind. Like, when am I going to nearly die again? Because it is going to happen and we know it is. Will someone stop it this time? Will it take more than some of my left visual field? Will they lose me the next time they think they are watching me die? Will the next time be the last time? When will it be? I hate the waiting, I hate the not knowing, I hate the way it creeps up on me. And at the same time I’m so tired of doing this over and over that I wish the outcome of all of this, life or death, help or a decline into death… I wish it would just get here now. And I don’t ever stop to think that, but I wonder if it just goes on in the background, because every now and then it bursts to the surface for a moment and catches me off guard.
But I have it easy, I know. My brain makes a big deal of stuff that shouldn’t be a big deal and I write out my feelings about everything, which is just my opinion, and therefore probably wrong. So I said it many times before and I will say it again…
There’s no way but through.
This will be ok. And I will get over myself and get a grip. I promise – and unlike most of humanity, I don’t break those unless I’m laid up in a hospital dying, and even then I’ll give it a pretty good shot at doing whatever I said I would or being wherever I said I would be (hmmm, I do not like this side of myself, I have no idea where this attitude has suddenly sprung from, but I am open and honest on this blog so I won’t hide it. I can only apologise).
Edit (about two minutes after I posted this originally) :
Ohhhhh. I think I’m ever so slightly drunk. That’s where hideously blunt and honest me came from. Well that makes a lot of sense. And explains why I feel a bit… Drunk. This was not intentional. I’ve only had one cider. I forgot that my capacity for alcohol is currently that of a mouse. Ok I’m going now, I’m actually going.
“Why do you never tell anyone?” The woman I grew up calling my aunty says (she’s actually my mum’s cousin, but our families are really close), leaning back in her chair as we all sit around a beach tent, a picnic basket and blanket at the edge of a cherry orchard. I seem to be the only person that notices that she has said it, but she, like so many other members of our family, is hurt that she isn’t kept up to date with my health, and only just this minute learned that I was recently in intensive care and stuff.
We talk about it just the two of us as we walk to the extra cherry trees we have been given to pick (the crop this year was poor in our variety of tree, so she complained and got given more trees). She says she really wishes that she knew about these things when they were happening, and that she occasionally only finds out by brief mentions of events on social media after they have happened (and after my parents have told me it is ok for me to mention them to people). She is clearly bothered that my parents don’t tell people or keep them up to date, and I explained the reasons why I couldn’t tell her – my parents feel it has to come from them I think, or people get annoyed that they didn’t say anything themselves, but they definitely always want to inform my grandma first (who also complains frequently that she isn’t informed until after the event) and then… Often don’t tell anyone. Like… Anyone. And so I can’t, because then they think people will start asking why they weren’t told from then, especially when people ask about me and my mum doesn’t tell them I’m in hospital or something. It sucks for me and it sucks for my relatives. (I’ve been here before, pretty sure it is in another post somewhere).
But anyway, here I am face to face with another relative who wishes they had been kept up to date, and Aunty Cousin (as I shall now refer to her on here) is different. She used to come and see me in hospital when I lived in the children’s ward, she’d drive all the way from a London suburb – not to see my family or my parents, just me by myself, and then she’d go home. Sometimes she brought her two daughters with her, who are almost 14 and… 9/10? I get along really well with the 14 year old and we message all the time. I forget she isn’t my age, and it feels like we are sisters, which I think both of us really like. Aunty Cousin treats me like I’m an adult and we always have each other in fits of laughter to the point where we cry and we can’t talk and it’s just brilliant. She cares, but not in an over the top worrying way, or a patronising way, or a way where the sympathy makes me squirm and cringe and want to hide away so much I feel if I were a cartoon I’d turn inside out just to escape… She cares in a way that feels nice. And I want her to know when things are crappy, and she is one of the people I always want to inform when I’m in hospital, because then she messages me or magically appears and she’s just there.
“I mean, I guess it’s my life and I can do what I want. I could just drop you a text next time?”
“Please, I’d really like to know these things!” We have a general chat after that, about how difficult it is being back with my family after a year of independence at university and all sorts of other topics, and then we rejoin the others.
There is a whole situation about the family holiday that… My family are going on. They’d rather I didn’t go along. That’s been made clear. Because of my health, rather than because I’m me, as would have been the case if my relationship with my dad was the same as it was a few months ago. My mum brings it up in front of Aunty Cousin, who can see that I’m finding the topic uncomfortable. She asks me how I feel about it and I don’t lie, I say I’d rather go on holiday and that I don’t really like the idea of my grandparents moving into my parents’ house for two weeks to keep an eye on me (home alone should mean home alone, I kind of don’t want babysitters at the age of 20 – in a month and a half I will be living by myself again in the city I love… That’s too long to wait oh help).
“Well if they go away you can always stay with us. We’re around until the 24th” which just so happens to be the day that my family will get back. I really like Aunty Cousin and her family, and to be honest this wouldn’t be so disastrous. My parents are at breaking point with me and I’m not enjoying being here at the minute. I feel like relationships are strained and they treat me like a kid – when we arrived at the cherry orchard I was told off for sitting on the edge of a picnic blanket. Their reasons for telling me off are that pathetic and they should no longer, as an independent fully fledged adult, be telling me off. My little brother punched my dad over and over to show off and that was fine by them… Aunty Cousin continues to discuss me staying with them as if it will actually happen, and I settle into the idea slightly. Sidcup is alright, their new house there is very nice, and they have a 5 year old black cockerpoo (cocker spaniel/ poodle cross) who loves attention.
But this family holiday starts with a week in France staying on the banks of the Loire (?) river in a flat owned by French family friends who we used to go and stay with when we were little kids. They watched us grow up until I hit about the age of 12, and then they sold up their big massive country house with the lake and the pool that they also ran as a bed and breakfast, and went to live somewhere else. We haven’t seen them for years and years and they are quite old now. I don’t want to miss out on seeing them.
Family friends who live just round the corner from us are meeting us in France and staying for a few days. My dad has known the guy since he was 11 years old, and they are best friends. The guy’s wife is a midwife. They are so lovely and we went on holiday with them a couple of years ago, but my dad went on a lot of holidays with them before he met my mum. They’re so much fun and so chilled out compared to my super stressy and strict parents. We’re then all driving up to Holland where my dad’s best friend and his wife (the ones I just mentioned) have rented out a big cabin in Centre Parcs for 4/5 days, and we are meeting their two grown up sons (unfortunately one of them is the idiot I mentioned on here before that made some very unfunny and insensitive jokes about my health, but I love him really because he’s like a big brother to me) and the oldest one (who can be insensitive) is bringing his girlfriend and the younger one is bringing his wife and two kids…
And I don’t want to miss any of that. But my mum said that if I get ill in France they are going to have to leave me there and come home. And we don’t speak French. It’s usually between 1-5 weeks between my intensive care admissions (or ALMOST intensive care admissions). I haven’t gone more than 5 weeks this year. The week we are due to leave is 5 weeks since the Norfolk disaster I think. Aunty Cousin jokes that I should try and get my next near death experience out of the way before then.
We take family selfies and they all laugh and I just don’t feel like laughing. I don’t talk to Aunty Cousin and her family like I usually do and she notices. She feels really sorry for my parents because of how stressed they must be, but there is an emotional void in place of any guilt. I am tired and overheating at too exhausted to feel.
“Just tell me next time, please.” Aunty Cousin says quietly, hugging me a little longer than everyone else as we say goodbye. I promise to. I need to. I want to. And I will.
“Tell me” she says as she lets go of me. It feels so amazing to feel like I matter so much that I almost cry, and I don’t cry easily unless I’m in a hospital (when I become a human fountain because hey PTSD).
I get in the car and I start playing Red Hot Chilli Peppers through my headphones and hold my hand out of the window as we drive through the countryside, until after about ten minutes I fall asleep. I get home to a lot of loving from my labrador, who refuses to let me do anything but sit with him on my lap for a good 15 minutes.
So now I face a dilemma. Do I stay, or do I go to France? Or do I try to find a way to just get a lift to Holland with my unofficial big brother and his girlfriend and skip France.
And then oh wow – when is the next meeting with the grim reaper going to be? I had, until this point, forgotten to anticipate or dread this inevitability or even remembered it was a thing. But I’m happy today. It was a good day with great company. I am majorly, majorly freaking about the second appointment I have in London on Tuesday, but I’m trying to bury that with cuddles from my dog (of which since I got back there have been many). It’s all starting to work out I think.
32 degrees celcius. Sixth form friend’s back garden.
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.
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)
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 AM NOT A DUMB-ASS! I repeat: I. Am not. A dumb-ass!
A while ago I made a post where I announced that I was provisionally a dumb-ass. I had screwed up the one exam I thought I’d passed. And I hadn’t failed it a little bit, I’d got less than half of the 40% required to scrape a pass, and with it, all chances of passing that module or getting a first at the end of my first year were lost. Then, on the 13th of July, I became a confirmed dumb-ass. My grade increased from 18.7% to 18.9%. The paper had been remarked. I was officially stupid. It took me three days to actually follow the link and log-in to look at my grades because I was scared to come face to face with my failure… Except, I was never a dumb-ass at all. The system is a dumb-ass. Not me.
After a phone call with my department of the university, it turns out they only had one grade for that exam (there should be three, weighted at 1/3 each). Only 1/3 of the entire paper had been marked – the multiple choice section at the beginning which was on a separate sheet, and which I had left mostly blank because I was terrified by the thought of negative marking for incorrect answers. The written answer questions, which I’m not going to lie, I felt I totally smashed (I gave about twice as much detail and information as I needed to for the marks given, because I hadn’t panic revised the night before for nothing and was not going to waste my efforts) were on a typed word document which I then printed and, as I did for all my other exams, left it on the desk and wheeled out of the room. As if sitting the exam in a wheelchair (in a room that clearly was not designed for wheelchairs) hadn’t made the whole thing stressful enough, it turns out the typed document COMPLETELY DISAPPEARED OFF THE FACE OF THE EARTH. THE EARTH!
(My friends told me there had to be a mistake when they found out my grade. My mum said there was no way I’d ever fail, let alone by that much. Instead of believing a single one of them, I crumbled under the pressure of fresh expectation. They had too much faith in me, I thought. No. They knew my brain better than it knew itself. I have never been so happy to be wrong!)
I was told to contact my personal tutor, but I knew she would just refer me to someone else who could actually deal with the issue, so I skipped the middle man and asked if there was someone else I could talk to about it all. This resulted in another series of scary emails (I finally emailed my consultant about ten minutes before all of this took place. There has, as of yet, been no response). I logged into my email account first of all to find an email from the deputy head of our department of the university (the guy who told me I would fail stuff and should interrupt my studies and come back next year? The guy who made me feel really unsupported when I stayed?… Him?).
My worst fear had happened, he had found out that I failed. He had also been informed of how unwell I was during the exam period and why I missed my last two exams. He was nice about it for a change. Even though he made a point of reminding me how many modules I needed to pass in order to continue and asked me to possibly meet him or make a phone appointment, and if not just reply to his email… But before I could respond to him, I emailed the lovely lady who runs the module I failed (but didn’t actually fail, because hey read what I just wrote!) and copied in my disability advisor (who I’m sure will support me through this if needed), my academic advisor, the deputy head of the university (so he knows I DIDN’T ACTUALLY FAIL ANYTHING) and the student support woman who deals with everything. I explained the circumstances and said the whole thing had been extremely distressing for me. Then I replied to the deputy head’s email reminding me how many modules I needed to pass, confirming that despite his offer of me putting in another extenuating circumstances form, I will be sitting those damn exams even if I’m half dead (I actually sat three of those exams with bloods worse than those that I had when I was in the ICU. No idea how. Doctor said I was superhuman and invincible. My friend called it incredible. My tutor group called it stupid. I called it stubborn and pretty amazing. Adrenaline and a fear of the deputy head finding out you missed an exam really are quite powerful!).
I went shopping. I bought myself a load of fruit and vegetables and salad and meat and fish. No gluten. Barely any carbohydrate (I also bought my dog a toy, and very nearly invested in a free-standing, above ground, 10ft wide pool because it is now 32 degrees and I CANNOT HANDLE THE HEAT). My mum paid for it but kept a note of how much I owe her. I was so happy I practically flew around the supermarket. I just kept saying, “I can’t believe I didn’t fail.” We had to stop off at Dad’s work to pick up some shopping bags on the way and I was so excited I even told him. He didn’t really know what to do but he was pretty happy, so happy that he ruffled my hair like I was the dog. It was weird, but I was too happy to acknowledge the slight awkwardness of this action. Moments like that between me and my dad are very few and far between. I rarely give him reason to be happy and it is even rarer that I make him proud. Shout? Yes. All the time. Without even meaning to or sometimes knowing why. Smile? Nah. I kind of have the opposite effect. I bring out the sulks that ruin the atmosphere for everyone. He’s a nice guy, I’m just toxic to him. Ok… I’m not going any further into this. Dangerous territory and all that. I will say something I shouldn’t and talk about stuff I promised myself I wouldn’t. We don’t get along well, although at the moment we barely talk which actually works very well… Let’s just say that and leave it be.
Anyway, I came home to a response from my email, in which my lecturer (also head of that module) sincerely apologised for the distress the whole thing had caused and said of course that are going to look into it. That was the first line. The rest of the email already didn’t matter. I just need her to sort it all out before the 1st of August, when I am due to re-sit the exam that I failed (BUT DIDN’T FAIL), at which stage my coursework grade will be wiped out, and my overall grade for the module will be capped at 40%.
I could have been angry at the university for putting me through yet another unnecessary stress, as they have done so many times, and my mum was all “Why is it always you?!” but honestly, I’m just so stunned and so happy and so… Grateful. It’s all being sorted now, and that is all that matters. (I am sorry that you probably really don’t care about this, but I am so happy and excited right now, and I only ever seem to share the bad on here, but this was so good I had to share!).
I have had so many near breakdowns over that result. I hated myself, I nearly gave up on the entire degree because I thought I was so stupid I didn’t deserve to take up a place somebody else could make better use of… I almost cried over it. For days I felt like life had slapped me around the face because university was is all that mattered matters, no matter what other stuff I am going through. As if recent near death experiences and health hiccups hadn’t been stressful enough, a university screw up brought me to my knees. I was so ashamed for not just falling short of everybody’s expectations that I would get a first overall, but by doing so in such a spectacular way. For two days after I learned that grade I couldn’t look in the mirror – I covered them all up and turned them all around. I fell apart over that result. I believed it and doubted myself when everyone else did the same thing the other way around, doubting the result and believing in my ability.
I am not a dumb-ass. And oddly, I seem to be the only one who ever thought I was.
A year and a day ago, at my wit’s end, isolated and alone and pretty much bed bound, I took a huge and significant step to pulling myself out of the rut I had become stuck in; I started trying to get a life or at least return to something that felt less like just an existence – I took a chance on the Internet and on myself and started a blog. Yesterday, almost 100 followers, and thousands of views later, that blog – this blog – turned 1 year old. Compared to most blogs the figures I mention above are minuscule, but I started this blog as my place to let everything out and I never imagined anybody would care enough about the words I wrote to even hit like, let alone follow.
A year later I find myself stuck in the presence of another rut. Life seems to be a bumpy ride involving lurching from one rut to the other with periods of normality in between. Without this blog, those ruts would become canyons. The comments I receive on these posts sometimes genuinely move me beyond belief. They always drag me out of the isolation and crippling loneliness that boundaries imposed by my physical health create. I would say this blog saved my butt, but in truth it has been the people who read these posts, every single awful one (to clarify, awful posts read by AMAZING people). Your likes and comments make me feel good for something when my health and self hatred rob me of any belief that there is a purpose to my presence on the planet at all. You make me smile when it is the last thing I can imagine doing. I have met some amazing people through this blog, some of whom I still need to email (I haven’t forgotten!).
Thanks to the responses my raw, uncensored (and hence often poorly written) thoughts get in this blog, I feel less isolated by my emotions, less alone in things that most of my friends and family do not understand. I can have the difficult conversations here, I can work everything out and let everything out and for some reason people seem to want to read along. But every like and every comment reassures me, makes me feel less pathetic and encourages me to keep expressing myself through this method as I so clearly need to do. As a result, this blog is the only place I feel I can be my true self (I now add the presence of my fellow third wheel to this list). I don’t have to pretend to be anyone here, I do not have to hide my weakness or my emotion to shelter anyone, there is nobody to protect and rarely anyone to offend. I post irritatingly often I am aware, but I need to. Sometimes I have a lot to get out. Sometimes it is just boredom. All the time, whatever it is, this blog fixes it. It has done wonders for my self confidence at times.
Through a year of writing myself out of ruts and into others, I have found one thing that will always have a positive impact on my life. The people who follow this blog know more than my family even, which makes me feel like a pretty awful human but also helps me avoid conversations I would never know how to start. My family have been hurt enough and what they don’t know will not hurt them yet. I would shred myself to keep them whole. I will hurt and go through things alone to spare them the pain of the worry whose thumb I am often pressed under. Sometimes they are so frustrated at me for being so defective that they want little to do with me. So I blog. Always with the blogging!
And the year that passed has been an interesting one. It started with minor heart surgery, and followed the rollercoaster of my first year of university (I am kidding, it was not a rollercoaster it was an emotional apocalypse with added despair and at times heaven on earth). All I had wanted was to go to university, and that dream came true. This blog followed the near death experiences right from freshers’ week when my body started as it meant to go on and put me in intensive care. I have made friends, lost friends, gained an extra set of parents (uni parents) and pushed them out of my own reach too. I was pushed to leave university for a year over and over, people doubted me, I was unsupported and I was lost and I had nowhere to turn and nobody to talk to. Except this blog. I clawed myself back in the direction I wanted to go. I ended up in a wheelchair at uni in the end but I sat my exams (most of them). I wrote an article for the mighty recently, which isn’t a big deal but was a huge deal to me because I was amazed by the response my writing got and it really encouraged me to believe in myself a little more.
And the people following my blog… You guys came with me on my first ever holiday with friends, you were there two days later when I was in an intensive care unit and you’ve been on the journey to finding out about a minor brain injury with me… And my sight may never be normal again, I may never see clearly and I may never get rid of the shadow in my left visual field…
But with the help of all of this, with all of you (and especially with the words of uni dad) I realised that no matter what is thrown at me, there is no way but through.
Thank you. Sincerely and genuinely for reading this blog, for clicking those stars and that plus and for even reading at all. I told myself I’d never make a post like this, but I had no idea how important this blog would be or become to me. So again, if you have ever read this, I apologise for the awful and rambling nature of my writing, but it means more to me than you could ever imagine that you read the things I put.
I owe WordPress an awful, awful lot.
So this post if for all of you for a change. I feel I owe you the post I swore I would never write. Congratulations, I am a stubborn thing that hardly makes exceptions, but the kindness I have encountered here deserves exactly that.
People whose idea of unwell is a cold seem to underestimate my inability to human (and in fact, people who are almost as broken). I am too embarrassed to let them see it, even when it is apparent to me that I’m in trouble. You know where this is going, don’t you?
It came back again. I don’t even need to say what, do I? If you read my last post you’ll have some sort of idea. I cannot beat this. I cannot avoid it. Very soon there will be no way but through it. I should be in hospital right now. I should be in resus. I need serious help. And yet I cannot overcome my desire to cling to this freedom. I need a break. I need this break. I am so far from my family and from hospital appointments and impending surgeries and scans and telling one of my doctors about the mysterious bundle of mutant cells I have discovered that is raw and likes to bleed a lot for no reason (nothing to worry about, totally harmless I’m sure, but very annoying). I don’t want to live under the weight of all of that right now. I am free to breathe – to be with my friends and forget it all and feel like a normal 20 year old even though I will never be normal and I… Need that. I need it more than the numerous injections and tablets that keep me alive and police my body every day. For the sake of myself I need this happiness to last. I need this. I just need it.
It won’t last. We’ve been here just over a couple of hours, and sixth form friend waked is around the centre of the caravan park on a tour. It was a couple of hundred metres but it was too far, especially when you’re on the verge of a medical emergency and your body isn’t metabolising glucose so has NO energy. I was breathing heavily and I knew what it meant. There was nothing I could do to stop it. I didn’t want to say I couldn’t walk such a teeny tiny short distance. I somehow got back to our static caravan, and then we decided to go shopping to two supermarkets for food and stuff. Before that, sixth form friend made us all walk about twenty metres to the beach (we met an adorable and very stubborn Jack Russel called Jack, who wanted to go to the beach and refused to walk in any other direction). I didn’t want to be left behind. Somehow I walked. I held myself up using the fence. Nobody had any idea how unwell I was… I was kind of weirdly really pleased with myself for successfully hiding it.
A supermarket is a bad place to notice you are no longer on the edge of an emergency. I was barely conscious. I couldn’t stand still because I knew I would fall to the ground. I cannot describe how unpleasant and unwell this situation makes a person feel. It feels like septicaemia without the raging temperature and the shaking… It’s rough. A panic should have kicked in, but it wasn’t the panic I was expecting. All I could think was we’ve not even been here two hours please no. I am such an idiot what even am I? Self, you’re an utter dick. What even is this? You knew! And then… I can fix it. Just don’t lose consciousness. Don’t throw up. Somehow walk in a straight line and for goodness sake figure out how to hold your head up. Lungs, chill. I know why you’re breathing like that but we don’t have the energy to breathe this heavily and I know it is laboured breathing but seriously you are not helping yourselves. I’ve got this.
I walked straight in when we got back. I found the drug I needed. Hardly able to focus my vision I injected it into a vein. I crashed out on the sofa. I cannot move. I can’t get up. The world is spinning and I feel sick and my head is pounding. I barely have the energy to breathe. I can’t hold my head up. They all want to walk to the beach now. My actual (and slurred) response was,
“No guys I’m dead we can’t move.” Dramatic, but I needed them to get the point, and it is very unlike me to say no because of my body so they understood that things weren’t great. They keep offering me cider and still have no idea what is going on inside of me. I want it that way. I do not want to bother them. This is such a mess.
All I can do now is hope that what I did will be enough. It won’t fix this, it will temporarily move me a little closer to safety but not out of this disaster. My body will fight because hey it’s amazing at that, but sometime very soon I won’t be able to help it.
This is my body. This is the one constant in my life that should be fine when everything else falls apart. The one thing I should be able to control is floundering before my eyes and there is nothing I can do to stop it. It makes me feel like such a failure. I feel so responsible and deep down I know I’m not.
I can hardly keep my eyes open. I could not stand now if I was asked to. I could not sit up for myself.
I will just keep trying to save myself until I can’t any more. Usually this lasts a couple of days. And I’ve no idea who to turn to after the whole “I’m listening, I just refuse to accept what you’re saying” saga. It’s really knocked my confidence and I’m hours away from Kent or London. I need to sleep because my body won’t let me do anything but, and right after that…
There is only one thing to do – live (or cal an ambulance. For those of you who know me or have read this blog and know how I feel about bothering ambulance crews, do you now appreciate how disastrous this is?). Stupidity is not the way. Time to be sensible.
Every extra day I get outside of hospital is worth it, and I can’t even bring myself to think about hospital right now because I want to stay happy until the last possible moment.
It’s going to be ok right up until it isn’t. I’m so grateful just for this right now (where I am and who I’m with… And even my health, because this could be worse, there are people who will not see the next second, there are people in this situation in hospitals terrified. I am not in hospital. I am not terrified. I am free. I am being sensible. I have been given an opportunity to feel normal by an incredible trio of friends and I could never ever ask for a single thing more than that. Happiness seems to make everything so… Positive).
Now to go try and save my own butt.
This is why I call myself Icarus (which is what I was going to call my t-shirt company but the name is taken). Right now, Icarus is flying way too close to the sun. I should be plummeting to earth. I am. But…
“I’m falling, so I’m taking my time on my ride” – Twenty One Pilots, Ride
It hasn’t even been two weeks since last time – the grim reaper must have nothing better to do. I wish he’d give me a teeny tiny break. I know that’s so pathetic and ungrateful but I’d like a little reprieve.
Here we go again, I guess. Too happy at recent life to melt down, to fear, to think about what I now know is inevitable.
Tough to say. Tougher to know. Even tougher to watch, which is why I’m glad nobody else knows.
I was in the back of an ambulance on my way from a specialist hospital in London to the children’s ward of my local hospital (where I had been living for almost a year). It was dark. Winter. Very late. I had just been told that afternoon that some of the best doctors in this field in the country (who were in charge of my care at the hospital I had just been rescued from) had no idea how to fix the particular health hiccup that was keeping me in hospital, which meant I would be “in hospital indefinitely” on continuous infusions of IVs. I was 16. I was replaying those words over and over in my head, my heart sinking lower each time I did so, my eyes heavy with tears I refused to let fall. I stared into space in the back of that ambulance. And then we passed a cinema, and outside in a huddle, laughing and shouting, was a group of teenagers my age. My heart lurched then. The ambulance man looked at me,
“Do you like the radio?” He asked. I nodded politely. He called to his colleague who was driving, and told him to put on the radio,
“You like Radio 1?” His colleague called back to me. I nodded again. If I opened my mouth I knew I would cry.
He turned on Radio 1. He turned up the volume so loud the whole ambulance vibrated to the beat. We couldn’t even hear each other when we shouted. Couldn’t hear the sirens. I could feel the sound running through me. And then, almost at midnight I think, on came Pompeii. The chanting at the start of that song instantly calmed the emotions rampaging through my brain. I stopped, distracted from my thoughts, and I listened to every single word of that song. It had me from the first line.
“I was left to my own devices | Many days fell away with nothing to show…
But if you close your eyes | Does it almost feel like nothing changed at all? | And if you close your eyes | Does it almost feel like you’ve been here before? | How am I gonna be an optimist about this? How am I gonna be an optimist about this?” – Bastille, Pompeii
I had never felt such a connection with a song (even though I think it was actually written about the eruption of Vesuvius and the citizens of Pompeii), because in that minute it did feel like nothing had changed at all, and I had been here before, and I didn’t know how to pull any positives from the situation. I was at breaking point, and just as I let go, that song, those words… Caught me. I didn’t feel alone any more. I wanted to listen to that song over and over again. As soon as it had finished, I found it online and listened to it on repeat. In my hospital room that night, I walked around the room with tears streaming down my face, dragging my IVs around with me, listening to that song over and over and over just to make things feel ok. Eventually, I fell asleep to it. It was all I had, my only companion. I don’t know what I would have done if I hadn’t heard that song. I had no hope left, I was going to give it all up.
I listened to Bastille all the time when I was in hospital (I still do, although now other artists join the playlist). I went through some awful times with their music in my ears, eventually an entire album of it. It was my pre-surgery soundtrack, my post-surgery soundtrack, my shhhh it was just a nightmare go back to sleep soundtrack… It gave me hope when I thought all was lost. It picked me up when I was down. A while after my closest friend (who I eventually discovered had been planning on asking me to be his girlfriend, and who I then realised I loved far more than a friend) died following a transplant, Torn Apart was there in my headphones. When I was angry, happy, scared, sad, lonely, bored… It was there. A constant soundtrack in my life, to the point that some songs from their first album now trigger the flashbacks they then save me from. I listened to their songs on repeat as I laid battling septicaemia, when we thought I might die. I have never met these people and yet their music moved me in ways nothing else could. I had heard songs before, but never had one made me sit up and listen like Pompeii did in the back of that ambulance.
A week before my 18th birthday, and I had just beat septicaemia again. I was stunned to be alive and couldn’t really comprehend the fact that I somehow was. I was fragile, my health was scarily deteriorating, I felt forgotten, and PTSD had just started to become a major issue in relation to hospital admissions. Bastille were in concert at Alexandra Palace. I went to see them, with my best friend from childhood (brother friend, remember him?). An ambulance was nearly called for me because my heart (which was by that stage becoming a major issue) had a huge hiccup, but we just pushed into the crowd and got lost. And then there it was. The battle was over, I was free from hospital, I had almost made it to the end of my childhood, and standing in front of me on a stage were the creators of the music that got me through it. I stood there, and once again the music was so loud that it made everything vibrate and I felt it run through me. I listened to the songs that had got me through, and a wave of relief washed over me. I had made it full circle, I’d made it to an age I didn’t think I would see… To the sound of these songs, to the music of these people (which would probably never have meant so much to me without the horrors that it got me through). It was so symbolic, that this horrific, traumatic chapter of my life should end to a live performance of the music that had picked me up right in the middle of the worst of it. I sang along to every word.
Their music was the first to mean so much to me. It introduced me to the power of lyrics, and was the first music to get me through a hell I would not otherwise have made it through. I can’t say anything about these people, I don’t know them, but their music… Their music will always have a place in my heart, because it is part of the reason it is still beating and unbroken enough to function.
“Bad news like a sucker punch, what do you say? | Air knocked out of my lungs want you to stay | When you hear something difficult don’t back away | Some people say nothing, good ones engage
Don’t turn your back on me | Don’t bury your head deep | Just ’cause you don’t know what to say…
It’s true | That it kicks you in the teeth when you are least expecting | Bad news | Oh it beats you black and blue before you see it coming|
Bad news like a sucker punch moving your way | People fill the streets like nothing has changed | … | Planes fly overhead like any old day …
Maybe I just want some words of distraction | I feel like I’m being consumed | Maybe I’m expecting the perfect reaction | To pull me back…” – Bastille, Bad News
(I listen to this song after every bad hospital appointment, or when I’m in hospital and learn the extent of the health hiccup that put me there. In situations such as that it is often the only thing that comforts me as people usually don’t know how to react, aren’t there to support me through such difficult times, let me down, or avoid me because they don’t know what to say)
I totally relax to the sound of this music. This was the band who showed me the true power of a few lines of words. I once bought an albatross necklace and wore it around my neck as a reminder of all the crap I was carrying around. I listened to a track with the lyrics
“There’s an albatross around your neck | All the things you’ve said | And the things you’ve done | Can you carry it with no regret | Can you stand the person you’ve become
Your albatross, let it go, let it go | Your albatross, shoot it down, shoot it down | When you just can’t shake the heavy weight of living…” – Bastille, Weight of Living (Part 1)
And as I did so, the chain on that necklace broke, and my albatross hit the ground (seriously that thing now won’t stay on any chain I attach it to and it isn’t even heavy… I lost it eventually because it fell off somewhere. If you’re wondering about an albatross being worn around a neck, read The Rhyme of The Ancient Mariner).
When I listen to their music, the albatross never matters. It takes off and sends my mood into the sky with it. Without fail. Always. Suddenly I don’t care about the person I’ve become – I am someone else, somewhere else… Always. Such is the power of music.