If you’ve followed this blog for a while, you’ll know that my dog (an almost 13 year old Chocolate Labrador) has been my furry rock through all the awfulness – health wise and in my personal life – I’ve faced (most of which hasn’t been mentioned on this blog). You may also know that I have for a long while hoped to someday get a service dog, not only for my physical health problems and PTSD, but because of the support and responsibility it would provide that might give me a reason to hold on. My life is falling apart at the minute. I’ve bounced in an out of hospital, had more heart surgery last month after spending 3 weeks in a heart centre (and going into arrhythmia, passing out, sustaining a severe concussion, and ending up with a GCS of 6 for several hours and lasting memory loss, co-ordination and cognitive issues). I’ve maybe got an infection in my pacemaker, or my heart is just being an idiot. I’ve torn a couple of tendons in my pacemaker shoulder – we don’t know if it was the surgery, or a pacemaker infection that spread, or what. My cardiology team are M.I.A and I don’t want to chase them any more.
My days are a swirl of suicidal ideation and… PUPPY CUDDLES. Click the link to meet Teddy.
“Are you going to feed your doggy one last time?” My mum said to me. Suddenly my heart broke to look at the chocolate labrador staring up at me. I’m going to miss him like he’s a part of me. I stayed up until 3am just to savour every second that I sat with him asleep on my lap, watching his limbs twitch and smiling as he stirred and nuzzled into me until I gently soothed him back to sleep.
“You’re not going to see him for two years.” My mum had said a few weeks previously, assuming that I would live in my new accommodation for the rest of my degree, and making it clear that I had to stay there as much as possible because it’s so expensive we can’t afford to pay for an empty room. There were times last year where I missed my dog so much that I became a little broken. Detached from my furry emotional rock, I drift aimlessly, and eventually end up in troubled waters. I would come back to my family’s home just to be with my dog, just to see the pure joy he expressed at the sight of me, to cuddle him for hours as his tail refused to stop wagging. So I sat there last night, and I just held him. And I missed him already.
Beyond all of that though, there was excitement. I just want to go.
My mum and I spent the day together. We had a few arguments but they were minor and mainly involved her being super strict and stress and disciplining me like I was a child for teeny tiny things. We went to see the new Bridget Jones film, and then after a brief stop to buy food for dinner (and yet another mug for uni) she took me to get my toenails painted and stuff. That was nice.
My sister came round, she’s flying back to Dubai today so she said goodbye and stuff. She cried when she left her only child in our house. Kinda understandable. My nephew wasn’t phased.
My Fellow Third Wheel appeared at half eight. We sat in my kitchen and just had long, long chats until gone midnight. We started talking about going on holiday, and he suggested that we go together, at least two a year. We found the cheapest deals (like £299pp for a 7 night, 4 star stay in Santorini, with flights and airport transfers included). He’s coming to stay with me in London the weekend after next, and he says that when he’s there we should plan out all the places we want to go together and… book something. He isn’t scared to go away with me after what happened in Norfolk, and he isn’t put off by my health, which is so strange for me and SO AMAZING. His birthday is the day before mine, so we definitely want to go somewhere next March if he isn’t working. We had long chats about life, uni, his chronic fatigue syndrome, Star Wars, and every other random subject under the sun.
He called me as he walked home (it was about a four mile walk, but he likes long walks at night and has called me from random places many times). We chatted some more, and somehow knowing that he’s coming to stay soon makes going back to uni less daunting. I will be less isolated. I already have so many plans for the first week. My Italian friend from uni was the first friend I actually made there. We talked for ages before fresher’s week even started, and on the first day my family sat with hers and we all got along very well. Our parents email each other, and although she then got a boyfriend, bailed on our plans all the time about ten minutes before they were due to happen, and wasn’t heard of for months and months, she is such a lovely person. She messaged me the other night and I helped her out with a dilemma she is in, and then suggested that we should meet each other on the first day of our second year, just like we did during our first year, and make it like… an annual thing. She loves the idea, so that’s happening later today.
I’m sorry this post is rubbish, but I have to go now. Next time I post, it will be from home. From London. From across the road from my university. And I will be a little stunned from the sudden change. But I hope I will be whole again. This is a fresh start. My new year starts every September, not in January. And I can’t wait.
I always get a little on-edge when things suddenly start to improve. I enjoy them warily, cautiously, before giving in to my desperation and throwing caution to the wind. Some call me a pessimist, but after years of living with this body, and wandering through the course of my life, I am simply a realist. The higher you climb, the further you fall. If you’re on the floor you can’t fall. If you are only a short way above, with your expectations limited, you don’t do any serious damage. But I have been in the stratosphere. And pathetically (and for no real reason) I hit the ground with more than a bump.
“That’s the point. This healthy-feeling time now just feels like a tease. Like I’m in this holding pattern, flying in smooth circles within sight of the airport, in super comfortable first class. But I can’t enjoy the in-flight movie or free chocolate chip cookies because I know that before the airport is able to make room for us, the plane is going to run out of fuel, and we’re going to crash-land into a fiery, agonizing death.” – Jessica Verdi, My Life After Now
Physically, things haven’t been going great. Compared to how I was a few weeks ago they are excellent, but really not great. Health hiccups are starting to hiccup in combination, a combination that usually attracts the grim reaper for a little chat. But that wasn’t going to stop me.
After my swimming stunt on Friday, I slept a lot yesterday and cuddled my dog for hours as I lay beached on the sofa. I watched the Olympics, and I was in heaven at having non-stop sport to watch. I felt inadequate and inspired at the same time. It woke in me the same ambition that was planted in the mind of my 12 year old self when I walked out of the pool (after an afternoon of swimming laps while my dad and brother messed around) and saw footage of Rebecca Adlington winning a gold medal while I sat in the café waiting for my dad to finish drinking his coffee. There was that same idea of I will never get there, but I can dream of getting somewhere half close. Only this time, “there” was nowhere near as ambitious. I started to wonder if I would ever compete in any sport at any level again. But it wasn’t a sad thought. It was a positive thought, it was a driving force. It was a burning desire to get back in a pool or in a boat or be attached to a pair of legs that could run for miles… And I lost myself in the heaven of imagining what that life might be like, what the life I used to have might be like if ever it returned. And it didn’t drag me down. It pushed me higher. After my surprising ability to swim, I felt a little invincible (which is always dangerous with me because it encourages my stupidity).
I nearly bought a road bike (and a laptop, but hey). A road bike. Me. The person who it took two and a half hours to swim 1,100 metres, and whose body and heart screamed the entire time (and the heart for about twelve hours afterwards). I knew swimming had been too much, that there was no way my heart alone would deal with cycling, and yet for a brief (but not as brief as it should have been) moment, my brain was all Yeah heart you can do that… (It can’t. It TOTALLY can’t). But there I was, looking at a cheap but decent road bike in a massive sale on a cycling website, imagining myself holding the handlebars and cycling my way around London to get to the Olympic park and go for a swim… Me.
I wanted to go for a run. 12 year old me could never ever sit still, she was always doing some form of sport (or reading/ writing a book… or drawing… But mostly sport) and she seemed to be back in charge of my brain. I had found myself in a swimming pool and although I loved the sudden fire for life that raged within me, I was aware that my sudden urge to go for a long, long run through the woods was probably rather stupid. Because my legs wanted to move. I didn’t want to sit still. Exercise is different now. It never used to hurt and now it is near agony (even to walk half a mile). I never used to notice the extra requirement of my heart and now even walking reminds me that the demand for blood is higher as my heart races and aches. But still, I wanted to go for a run. I wear running shoes most of the time because that temporarily appeased my urge to run when things got tough at uni, and continues to quiet my urge to just get out and go. But I couldn’t run, because I knew I’d probably end up in an ambulance. So I walked my dog for half a mile without a care in the world. And the only thing that stopped me running was the clothing I was wearing (not even the partially torn tendon and my screwed up knee, both of which were taped with physio tape).
My hugely distended abdomen didn’t bother me. The twinge in the back of my knee and my patellar tendon with every step didn’t bother me (for once I walked without my knee cap wandering round to the outside of my knee – where, for the record, it really shouldn’t be).I was impressed that for once my immune system seemed to have contained (but not kicked out) and infection after a worryingly fast initial spread. The thundering ball of muscle in my chest that ached a little was drowned out by my relief at just being outside. And I’d managed to swim the day before. That had saved me. After those 1,100m of pain and cardiac outrage, life felt bearable again. Mentally, I felt refreshed and freed. For the first time in years I had the opportunity to clear my head, to think of nothing, to let time pass without the dread that it is dragging me towards the next hurdle into which I will stumble. As my muscles screamed all the pent up frustration and worry and… Emotion had just seeped out of me, lost to the blue of the water. That is what sport always did for me. And I was still riding that high as I walked my dog, craving it again like a drug.
Instead of freaking out about my hospital appointment in London tomorrow morning, my brain focussed on how I planned to come back and swim afterwards, in the pool where my old club is based (went swimming in a different pool the other day because my brother and nephew wanted to go somewhere with slides and rapids as well as a fitness pool). I was so excited and happy at the thought of swimming again that there was no space to freak out. Swimming helped me conquer fear that is usually crippling by this stage. It also helped me sleep the whole night through for once (and most of the next day but hey).
I stupidly fell head first into the brilliance of it all, the feeling that everything was falling back together, that I was being reunited with myself. But this is me.
I now feel I should set the scene. The 5th/6th teeth back on both sides of my top jaw both have HUGE holes in them. Until recently I’ve had perfect dental health. But I need surgery on my lower jaw after an infection so we decided to hold out and kill many birds with one general anaesthetic. For a couple of days, eating had become increasingly difficult as suddenly the only side of my mouth that I could chew on started to hurt as well, meaning that I could only chew with my front teeth. I found myself picking stuff out of the hole in each tooth with a toothpick after I ate anything. Anyway, yesterday my left holey tooth started to feel… Weird. (Scene set!)
A short section of my maxilla is about to become toothless, and not in an ironic sense like the adorable dragon in the How To Train Your Dragon series by Cressida Cowell (who I think one of my uni parents is actually friends with, awesomely enough) but in an OH NO I’M GOING TO LOSE A TOOTH EXCUSE ME BODY COULD YOU JUST NOT kind of way.
At about 11pm, I touched the hollowed out tooth on the lefthand side of my mouth. And I got the sensation of a wobbly tooth as HALF OF IT BROKE OFF under the gentle touch of my finger. Cringing (I do not do teeth. NOPE) I pushed the broken half back up into my gum, where it stayed somehow, and messaged my fellow third wheel (We message a lot anyway, and he’s a good person to talk to in a freak out because he doesn’t react emotionally at all so it’s great). I looked at my tooth and there was a crack from the bottom of it right up into my gum, with a slight displacement of each half. Well ok then. I thought. Except it wasn’t ok with me at all. The hardest substance. In my body. Broke. By itself.
It wasn’t a big thing, but I got so annoyed over it.
“[Me] please, [crying face] stop f***ing stuff up” My fellow third wheel joked.
But that’s the point. I felt like I’d screwed up another thing. Even my teeth couldn’t go right. The physical pain of a throbbing tooth didn’t phase me. I’m used to physical pain and can tolerate a stupidly unhealthy amount of it (which leads to weird situations like me walking around with a broken ulna for three weeks whilst in hospital, and insisting it couldn’t be broken because I could deal with the pain… This was the second time I’d wandered around for over a week with a broken bone. If I ask for pain relief or am actually bothered by pain, it tends to be BAD). The pain that I couldn’t handle was the emotional sort dragged up by the pain of a raw nerve meeting air and saliva for the first time. Pulses of pain throbbed through my tooth, and all I could think was, Why can’t I do anything right? I can’t even have a tooth right! A teeny tiny tooth! What next? I can’t even not screw up myself. How… How did it even break? And then I just got really angry at myself and concluded that I was indeed a complete screw up and could do right by nobody and nothing (this was a frame of mind induced by my family over a few days/ a very long time actually, but which swimming had helped me to shake off for the first time since I don’t even know when). I didn’t get all mopey about it, just super, super frustrated at my idiocy, even though I’m pretty sure that my tooth breaking genuinely wasn’t my fault. It was my tooth. I felt responsible for it. I feel responsible for all of my health hiccups sometimes, even the autoimmune part… As if I had any control over that (I’m an illogical thing most of the time).
I didn’t want to go to bed, so I slept on the sofa. My dog clambered up onto my legs and curled himself up so that his face was resting on my shin. He stayed laying there all night, only changing position when I got up and he freaked out with excitement upon my return no more than a couple of minutes later each time. I have too much love for that dog. I just cuddled him, and he let me hold him. Because he seems to be the one thing I can do right by, the one thing I haven’t screwed up. He loves unconditionally even though I don’t deserve it.
My mum of course got annoyed when I told her about my tooth. She swore at me and was very moody, which made me feel even more like it was my fault and I’d done something wrong. I was astounded at her reaction, actually. She was even annoyed that I’d texted her about it last night (knowing her phone was on silent and downstairs) in case I was asleep in the morning and needed to be woken up to call the emergency dentist before all the appointments went. Dad had just told me to go to sleep and wait until Monday. I was so tired I slept almost instantly and struggled to stay awake even on the phone to the dental person. Usually when I start to sleep this much it means the grim reaper is looming. My mum even said yesterday that I look like I am at the start of a very significant health crisis that usually ends in ICU for me. But denial smothered all of that. I was wary about telling my mum the outcome of the appointment. I’m scared of the dentist and the dentist said my tooth need to be pulled and the other filled, but that she wouldn’t do it there and then, and just gave me some antibiotics.
I nearly cried. The thought of extreme pain, the thought of having to deal with something else so tiny on top of other health issues that are so huge. It was just a little crushing for a few moments. I didn’t know how to cope all over again. I wanted to rip my tooth out and throw it across the room as it throbbed away in my jaw, taunting me.
And now my grandparents are here for lunch, which will be interesting after the other day when they were selfish and made me wish I was dead. I can’t even comment any more. It will start a war. And there’s already a battle that they’ve started over me. Pathetic. Selfish. Shameful. That’s how I feel their behaviour was. I don’t even know how to look at them right now. There are things I need to say that are better off unsaid. They also happen to be things that they need to hear. I cannot deal with selfish humans right now. They don’t care about anybody else’s feelings and we all pander to them too afraid to upset them. I’m done being torn apart by members of this family. Shots have been fired. And they will ricochet back at the people who fired them. I don’t want to argue, I don’t want to fight. But I need to let a lot of stuff out – carefully, politely.
“That’s the point. This healthy-feeling time now just feels like a tease. Like I’m in this holding pattern, flying in smooth circles within sight of the airport, in super comfortable first class. But I can’t enjoy the in-flight movie or free chocolate chip cookies because I know that before the airport is able to make room for us, the plane is going to run out of fuel, and we’re going to crash-land into a fiery, agonizing death.” – Jessica Verdi, My Life After Now
When you find your feet and learn to run again on the uneven ground that once made you slow, you have to be prepared to stumble. There is a reason the sight of it stopped you in your tracks. And you may be able to dance across loose rock now, but you will be caught out. You know you will. So you run harder now, you smile wider, and you try not to scream when you fall. Things are always too good to last. Things that go right are usually too good to be true. We find ways to screw up, to ruin them for themselves, to ruin ourselves.
I’m not talking literally about the running – I will not run, if I do, for a long time. On top of all the old running, bully-inflicted, sailing and football injuries that still niggle away, my body has decided to make sure I definitely won’t make it run any time soon. Yesterday I somehow pulled my hamstring. I thought the pain was cramp for a while, until I realised that the pain was in too much of a specific area to be cramp and it mostly hurt if I tried to move my leg. Sitting on it hurt(s). Then while trying to massage my leg until it chilled the hell out, I found a rather large lump across the back of my thigh, which made me conclude that I’ve pulled something a little bit, and it’s all inflamed and angry that I won’t give it a rest. My knee decided this was a great time to dislocate (on the same leg, may I add), and on the opposite foot, thanks to my poor circulation (heart, if you could just supply everything adequately that would be great), feeble immune system, and type 1 diabetes (made extremely difficult to manage thanks to another hiccup)… I now have an infection of my big toe. I’m not too fussed by all of this, physical pain has to be pretty extreme before it bothers me. It was the other sort that yesterday brought me to my knees.
I am riding highs briefly and then falling into the lowest lows, health wise (my body keeps just losing the ability to human, making me dangerously ill, and making doctors want to admit me to hospital, which I usually refuse right before walking out because I can’t deal with that right now) and emotionally (I completely break, then throw a blanket over the shards and ride the good for a little while, and then something else happens or I face up to something else and I just can’t cope again) and I’ve no idea why things are so turbulent right now. It’s frustrating to be so out of control of every aspect of myself, but the bad seems to be inevitable. That isn’t me being pessimistic, it is me being realistic. It would be easy for me to say life is bad all the time given my current situation, but it isn’t. I am lucky. I just very much relate to the quote that started this post.
Turns out that in the absence of my furry rock, I completely fall apart right now. He went to the vets in the morning.
He tried to walk out after me as we left the room, he looked very confused and desperately pulled against the lead to follow us. We didn’t know whether or not he would have cancer, or what decisions we would have to make if he did.
I went back to the house and finally set up my online shop. I mean, I actually launched the thing and finally put up some products. And I was running. I was smiling. I felt like I’d achieved something so I posted links to it on this blog and I was happy and… Then my mum picked holes in it and pointed some stuff out and I took it down. I made the site inactive and then came the stumble. I have been fighting my own thoughts a lot lately. I am in a bad place and I’m trying to hide that and trying to act like I’m not, but my mind is carrying the weight of a lot of things right now. If these things were physical injuries and I were an animal that humans value less than ourselves, I would have been put down. I’m ashamed of it and I am trying to overcome it, and the way I do that is with labrador cuddles at the minute. Shame crept in and I felt like I’d failed again.
At the sound of my mother’s critique and the fact that I’d screwed up (but, by the way, totally not screwed up) something so simple, I became incredibly frustrated at myself for messing up what feels like everything I try at. For a while, but especially recently, I have felt that I can do right by nobody at the moment, nobody in my family – but I’d been successfully shutting it away until I messed up such a stupid little minor simple thing that it more than reinforced the idea that I would probably never be able to do something adequately. I was so annoyed at myself for getting so bothered by the whole thing. I genuinely just fell apart, I wondered if I would ever do anything right, if anything I planned would go right after the many failed attempts to get to Edinburgh and the holidays with friends that fell through and, about five minutes after this saga, my friend bailing on our plans to join a leisure centre because she has to go back to uni.
I felt hopelessly alone and misunderstood and I’m still not sure where to turn with that. I messaged my fellow third wheel because we seem to do that pretty constantly anyway, and he was just there. He talked me through the whole thing. He sent me a load of memes to try and make me laugh. And then I just told him that I wanted to hug my dog a lot, and he pointed out that part of the reason for me falling apart was probably because my dog holds me together. This was a fair point. I still fell apart. I lost myself in the feelings I had been running form. All the issues my dog had distracted me from were in the forefront of my mind and I reacted pathetically. He said I was acting like such a girl. I got pretty annoyed. I hide stuff that I think a lot of people wouldn’t be able to handle let alone suppress.
I went to get my furry rock from the vets at 5pm. He was wearing the cone of shame to stop him scratching or chewing the stitches in his eyelid and leg. He was so high he couldn’t walk straight, so I had to hold him up with his harness using one hand, and steer him by holding the cone of shame with the other (as the vet showed me). He was still so high that he crashed into everything, at one point couldn’t work out how to co-ordinate his legs in a way that would move forwards, wiped out so epically in the carpark as we approached the car that he split the cone of shame… Then couldn’t co-ordinate himself enough to lay down, so I had to hold him up as he passed out with his face on the centre console of the car. He didn’t want people around him. He was grumpy. But I had my furry rock back, and in even better news, the lump on his eye was just an infected cyst, and they think that the most worrying of his many other tumour things may not be cancer after all, so I was incredibly relieved.
When we got back to the house, my dog didn’t know what to do with himself. He was confused and swaying but didn’t want to sit down, so I kept having to catch him as he just collapsed or tripped over himself (by this stage we had ditched the cone of shame, because he was too high to even realise he had fresh wounds and I know what it’s like to wear a cone of shame – albeit metaphorical – because of an illness). Then suddenly, he decided he needed a human, and that nobody other than me would do. He was drunk on whatever on earth they had given him, so he’d stumble over to me and then just sort of collapse at my feet when he stopped. We fed him and his back legs just slowly collapsed from underneath him as he ate, lowering his butt to the floor until his tail touched and he suddenly realised what had happened, straightened his back legs, and stood back up. Over and over and over. His back half and his front half were seemingly independent of each other for several hours, and his paws moved sideways crossing over each other as he tried to walk forward, which meant he tripped up a lot. He walked into almost every wall. I had to follow him everywhere, and periodically he would just stop, look at me, and throw himself against my legs clumsily. He freaked whenever I moved the slightest distance away from him, so I just had to sit and stroke him while he probably wondered what on earth was going on.
I slept in the kitchen with him last night, like I did when he had a general anaesthetic before (he’d had major surgery that time and could hardly move, but still did’t make a sound). I slept on an inflatable beach lounger thing and left off the cone of shame, and my high as a kite dog got as close to me as he possibly could, put his head on the lounger and wouldn’t settle until I was half on the floor, had curled myself around him, and given him a corner of the blanket. All night we stayed like this. Each time I got up to make a drink he tried to walk after me and fell over himself (I honestly have no idea what sedatives or painkillers they gave him but they took a long time to leave his system considering he was all stitched up by the start of the afternoon). When I went to the bathroom he eventually managed to make it almost all the way after me, and I had to help him back to the kitchen when I discovered him leaning against a doorframe in a very confused state (again, when he saw me, he leant all his weight against me in a sort of panicked state which made my heart break for him a little bit). He’s usually clingy and protective, but he was defenceless and confused and almost terrified to be apart from me. He needed constant comforting and I was happy to oblige because damn I’d missed him. He eventually came down from his drug-induced high at about 5 in the morning, at which point he just sort of collapsed on the floor while trying to bring me his toy and slept right round until my mum woke us up at 7.
All he wanted was somebody to be there, and I kind of felt really special that he would accept the company of nobody else. We have a special bond, me and my dog. He lays by me when I’m ill, and I do the same when he is (in a weird role reversal, such as the one this entire post is about). When either of us is ill, we take away the other’s cone of shame. Today as I started revising for the exam I have on Thursday morning, he refused to leave my side, and kept jumping up at me (which he never usually does). While I realised I had no student ID (which I need to sit my exam!) and frantically searched for hours until I found it (under a diabetic teddy bear who shall at some point get his own blog post) he did his best to follow me around.
After he had his painkillers he got a bit dopey again and stuck to my side like glue. Whatever the reason for his sudden super-clinginess, I didn’t feel like such a screw up any more. I feel like I’m better at whatever role I fill in that dog’s life than everyone else in this house, I feel like he sees something in me that nobody else here sees because he wants to be around me so badly all the time, and that’s enough for me, because I finally found a pair of eyes belonging to someone I care about who doesn’t think I’m a complete screw up.
I wake up this morning with every muscle searing. It hurts to move, it hurts to attempt to sit. My body is in shock – the aftermath of a half mile walk with my dog yesterday that realistically was half a mile’s worth of steps too far. I hadn’t realised my body was quite such a poop. But it was worth it. It was freedom, it was happiness. My dog needs to be walked every day (and isn’t unless I’m able to) and, in a weird way, I do too (I mean hey I’d rather run but… That’s probably never going to happen again unless you listen to my blind optimism at the minute). I get restless being stuck inside the entire time. But do I listen to my body’s protest at half seven in the morning? Yes. I roll over and fall back asleep.
Do I listen to the same protest at midday when I wake again? Of course I don’t. Replying to some messages from my fellow third wheel, I go downstairs half dressed and find clothes, and then I see my dog and I see the sun and my parents are ranting at each other about the continuing family feud that has continued to take place in my absence and is partially a reaction to me (and I can’t even deal with the situation because NOPE)… And I grab the dog’s lead and harness and put his collar on, and before I know it, we’re gone.
This was not the plan! I think to myself as we walk away from the house, but the sun is shining and I instantly just feel so happy to be walking under trees and breathing in fresh air with the Goo Goo Dolls’ most recent album playing in the earphones that I managed to relocate this morning (I am discovering a lot of music lately that I really like!)
And we walk further than yesterday, because I am riding a high. I am loving being back outdoors with my dog and every step hurts but I don’t want it to end. I push on when breathing becomes difficult. I push on when my legs start to scream. I push on when my heart turns into a runaway train, and I push on when I don’t know how to take another step. Luckily we have a lot of friends who live in this village, so I adapt our route to take us past their houses, so that if I collapse there is somebody who knows me. There is literally no way but through this feeling, we have to get back to the house and we have to do so under our own steam. The sun beats down, I touch my dog’s fur and it’s so hot. He’s panting but still ok. I’m panting and near collapse. And a quarter of a mile from the house, my heart starts to scream. I slow right down, and it isn’t a conscious decision but a physical limitation. I am not what I thought I was. Walking is still not my thing.
I can’t breathe. I mean I can, but I am heaving air, and slowly an audible crackle emerges, with fluid catching on each exhalation and making me cough. This is what used to happen at swim training in the end, right before I stopped. I ignore it and let my lungs do what they want, until I can’t ignore it any more, and I am breathing laboriously and quickly as though I am running. And then I start coughing. And then I am dragged out of my denial and I have ALL THE REGRETS because we are still about 300m from the front door, which doesn’t sound like a lot, but is A LOT. I take slow, clumsy steps, and I savour every moment because all I can think as I look down at my dog, who keeps looking up at me and pausing for cuddles, is He’s 10 years old. Our last dog was 10 when he died. He’s having surgery tomorrow. The anaesthetic is risky given his age and stuff. What if this is his last walk? and then I have to shut that thought process off right there because it makes me want to cry.
We get home. I’m melting because for the first time in a few weeks I’m not wearing shorts. I fall onto the sofa, manage to wrestle my jacket off, and endure the awfulness. My head aches and I feel ridiculously dizzy. I feel like I’m going to throw up. My leg muscles scream at the amount of lactic acid they are currently bathed in. My dog won’t leave my side, he rests his head in my lap, but he is hot and exhausted and eventually lays on my feet.
Gradually I regain the ability to breathe at a normal rate. The headache fades and the nausea vanishes and the dizziness eventually subsides, but I don’t have the energy to move. A walk. A little walk. 3/4 of a mile in just over an hour. Painfully slow. And beyond my capability. Just a normal activity. And I thought I could manage it.
I finally respond to the multiple messages my fellow third wheel sent me while I was walking. And I am full of regrets but as everything improves all I can think is It was worth it. That was amazing. I WALKED THE DOG AGAIN. WE WENT FOR A WALK just me and my pooch and IT WAS HEAVEN. I’ve been kind of puffy for a week or two, retaining water and unable to increase my water tablets because of my kidneys (and because I’ve almost run out). My face has puffed right up and I’ve looked like I’m heavily pregnant for a while, but after this walk it is my lower legs that swell up. My nephew walks in and I realise that actually I LOVE having him here, and would probably swap him for my little brother, who is being a pain in the butt. My mum comments on how puffy my face looks. I need to sleep. Even though I woke at midday and it has only been an hour and a half. My body is annoyed.
A gentle swim would have been preferable to a walk. It is much lower intensity and less stress on my body.
“I sense a little regret?” My fellow third wheel messages me. And he’s right, there is… Right under the smile that I cannot shake off. I won’t do it again. I don’t want to break. But I am glad I got to walk this morning.
And now to finally set up my t-shirt selling website thing that I’ve been working on (I have a website but have yet to upload any designs because I am an idiot and have been going through some stuff because I’m all pathetic). OH AND I NEED TO REVISE BECAUSE I HAVE AN EXAM ON THURSDAY (and I am completely not in the right frame of mind to sit it, and exam stress is completely suppressed by my family making me feel like a screw up and wish I was dead with their stupid selfishness so I can’t find motivation to o anything uni right now, which is why I needed a walk). And call me an idiot, but this afternoon, my swimming friend (who I went for lunch with the other day) and I plan to go swimming. My aching muscles will thank me, the one that powers them all may not.
No way but through. And to a pool.
“Icarus is flying too close to the sun” – Bastille, Icarus
Things I was going to consider posting about right now:
How last night I discovered the brilliance of reviewing products and got well over £200 worth of headphones for free, only paying for shipping from America.
How my fellow third wheel (who messages me every day), when he heard about my plan to push my body as far as physically sensible in a pool made me almost die laughing by replying, “NOT AS FAR AS YOU CAN” “MAD GIRL MAD” “SLOWLY” “SLOOOOOOOOWWWW” “GO MILD!!” because he knows me and my health pretty well.
How I completely ignored that and attempted to work out this morning using nothing but my staircase, managed a few press-ups (they are easier on an incline) and some other feeble attempt at using a muscle or two before my heart turned into a freight train and I… Sat down and decided it could be “leg day” instead.
How after that, my body involuntarily dragged me to what I hope was sleep and I have no idea how much of the day I lost, but my nephew woke me up after moving in and everything, and I had no idea what day or month it was.
The fact that when I woke up I did not look at all well. I mean, I’ve been worse – I’m not in the grim reaper’s hands yet.
That having my nephew living here is actually really nice, the problem is that my little brother tries to show off and turns into a sarcastic, cocky little… (deep breath, aaand calm)… when he is in the presence of another teenaged boy.
The fiasco of trying to inflate the beach lounger thing I bought online ages ago that arrived today, which was super comfortable so I sort of half passed out on it and stayed there for ages half asleep.
That watching the boys play basketball out in out cul-de-sac made me miss being able to do things so much that I took my dog for a very, very short walk, and when we returned we just hung out with the boys while they played basketball and sat there having infinite cuddles while they filmed each other attempting trick shots.
The crisis of Bob Jr. deciding that instead of keeping me alive he was going to give me half an hour’s warning before he ran out of battery and stopped infusing insulin into me… AND THERE WAS NOT A SINGLE AA BATTERY IN THE HOUSE.
The discovery that, after my dog and I went and hung out with them the second time, the boys (this isn’t fair on my nephew, it was just my little brother) produced such a level of annoyance that I couldn’t stand to be near them anymore.
MY SWIMMING STUFF ARRIVED
Went to a barbecue with all my mum’s work colleagues, at which everyone knew me and I only knew a couple, but they are lovely ladies and I got hugs and they talk to me like I’m one of their friends and they make me laugh until I cry…
Ok, well I kind of did just post about all of that. But it’s all been out of the water. Instead I want to explain why this photo happened tonight at 9pm:
I want to explain why my dog ended up getting his second walk of the day (I am not in London, so I couldn’t go for a late night wander by the Thames and around central London like I would if I had been at uni), why I pushed a body that was already screaming at me, and had already made several people comment about how unwell I looked, just to get out of my house. Why, behind the screen of the phone that took this photo, I could no longer hold in my tears, and in empty streets I had the privacy to just let them fall (our village isn’t too busy). Why I left the food I had just cooked and just left the house to clear my head, because that is always what I did before, and I am on a scary path of ferocious determination to do what my body won’t let me all of a sudden, and it feels awesome but stupid and terrifying all at once. Why I didn’t return until after 10pm, after walking about half a mile in total with my very well behaved and completely amazing dog by my side.
My own flesh and blood. That’s why.
Because I was sick and tired of being made to feel like a second rate human being, like the family screw-up, by everyone. That’s why.
Because I didn’t dare talk to any other relatives about everything and certain members of our family are selfish and pathetic and petty. That’s why.
I can’t tell you more than that. I’m not allowed. I wouldn’t dare. It would cause world war 7 if anyone ever found out I’d told the entire internet. I don’t know how to talk about it right now. I am deeply, deeply hurt. It cut me to the bone. I overheard a phone call where one of our close relatives (smart people will figure this out from previous blog posts) who gets extremely outraged if they are not informed before everyone else about EVERYTHING that goes on with anyone living in this house, was phoned by mum mum so she could keep the peace and ask how their holiday went to appease them… And they started having a go at her because they had heard my exam result disaster from Aunty Cousin via a familial version of a chain of whispers. Knowing how unwell I am and have been (not in detail, but they know it was enough to put me in ICU a lot), and all the other stuff going on in my life and our lives, they… Nah do you know what I can’t even say. I can’t. It was pathetic. It was pure selfishness, and let’s just say I now want nothing to do with one set of grandparents. I’m that hurt by the selfishness of the attitude and the insensitivity and pure self centred nature that I have ignored for far too long and given far too many second chances to. Damn it, I said too much. I’m not deleting it. I don’t care. I’m angry. I emailed sincerely apologising, and said that I don’t want anything to do with the pair of them for a while because I am so hurt and they already knew the situation I was in and were selfish e-… No, not doing this.
I walked my dog and I called my fellow third wheel and we just talked and talked for over an hour, until I was home and far beyond me walking through the front door, until our conversation diverted from him being as appalled as I was and me trying to hide the sound of my crying to us both talking about old school video games and guitar playing and sailing. I didn’t want to go back to the house. I just wanted to go for a run. For a split second I weighed up my options, whether collapsing was worth a short, short run my legs have craved for so long (running is no longer effortless and pleasant, as I discovered in hospital a while ago, it now hurts a lot everywhere, is a lot of effort, and makes my heart refuse to behave itself, ending in me on the floor and urgent medical care). But it was that bad. And I was wearing running shoes. And I was so close.
So I’m holding out for swimming tomorrow. Sport was always my release. It got me through forms of abuse and bullying and awful self esteem and no friends. It gave me life, it gave me a sense of meaning and purpose and the feeling that I was good at something and could achieve something with my life. I was top of the class for pretty much everything, but sport was something I actually wanted to be good at, something people admired and that I didn’t need to try and bury and hide like my grades. Sport was a release and a pick-me-up when things were bad and a reinforcement of pure joy when things were better. I wasn’t the ill kid when I was doing sport, I was like everyone else, and I was encouraged by a paediatric consultant (who ruined my life, started off my PTSD and almost killed me but hey) to participate in sport from a young age. I was going places. I could have gone places. And then my body. Said. No. But I need that release more than ever right now.
I feel so awful for existing, for burdening my family with the huge weight of my health issues and my incapability of doing right by anyone at the moment. Things were going to well, but there are no highs without the lows, and now I will appreciate swimming even more.
If you’ve read any of my previous posts you will probably know how important to me my dog is. We’ve been through a lot together. His health issues and mine. Turns out neither of us are out of the woods yet.
He’s covered in tumours. This isn’t new. They were thought to be benign but more of them started to spring up, and they were moveable under his skin and felt fatty. Then one popped up that was only 1cm in diameter, rock hard, immovable, seemingly embedded in the muscle in his back leg. I didn’t need to have done a histology module at uni to know that was concerning. My parents called me ridiculous, but that dog is my whole life at the moment, and my concern would not rest. He also has a lump on his left eye that needed operating on a while ago, but we decided we would wait to see if it grew… In a couple of months it has tripled in size. His cells are poops, basically.
Today we took him to the vet. He’s been a bit wary of the vet since the time we took him for a check up, it turned out he had testicular cancer, and he had major major surgery before he came home, minus his manhood, and with two huge scars in his side from where other large tumours (non-cancerous but not allowed to stay) needed removing. We sat in the waiting room, me holding his lead, and he sat between my legs, slowly reversing under my chair, constantly looking at me for reassurance and cuddles.
We went into see the vet. She was so lovely. She felt a few of the newer lumps and said she wanted to aspirate at least a few of them to take a biopsy. She said this was best done under anaesthetic, but we could try with my dog awake. So I held him as he went from wagging his tail, to laying with a huge needle in his side. He didn’t make a sound. He didn’t flinch. He curled his lip in pain and stared straight ahead. I instantly dropped to my knees beside him and started comforting him as he pawed at my leg in alarm. He relaxed immediately and looked into my eyes, relaxing enough to stop holding his breath and just focus on me. That, right there, is trust and unwavering faith. Normally when they are hurt dogs lash out, but he stayed calm as she repeated the process four or five more times. It was clear he was in pain, and he was startled, and he had no idea what was going on, and each time he looked desperately at me until I stored him and talked to him, and then I felt him relax in my arms. His back leg was most painful, it was the lump that concerned both me and the vet the most, and it was the most painful. He kicked his leg and I had to hold onto his paw, but again when I said his name and told him he was a good boy, he settled. Every time I asked him to lay back down and roll over, he did. I have never felt so trusted, and I have never been so proud of my dog. The vet was very impressed at how calm he was and how still he stayed. Turns out when a dog trusts you it will do pretty much anything.
When the vet moved away the last time, my dog ran behind my legs and hid, and would only let her near him to listen to my heart if I stood right beside him and stroked him. He pressed himself right up against my legs and stared up at me, and we kept eye contact the entire time as I calmed him down. Gradually he took his own weight, and his tail began to wag again.
The vet could only see fat cells when she held the microscope slides up to the natural light in the room, but she said that fat cells can surround anything and that didn’t mean the lumps were ok. She wants to repeat the biopsy of his leg because she doesn’t trust it, and it is so deep into his leg that she isn’t sure the needle managed to get far enough to get a true picture of what the cell type is. We refused to let her stick a needle in his eyelid while he was awake, given that my dog pulled his head away when she even gently touched that lump without any pressure or needle. I entered the consultation room with a chocolate labrador and left with something covered in white hair (there had been a white german shepherd in the room before us and it was shedding its fur, so both my dog and I looked like polar bears when we left).
He’s booked in for surgery on Monday. Because of his age and the fact that he has had anaesthetics before, there is a huge risk in giving him an anaesthetic, which we have been trying to avoid. I don’t know what I will do if that lump is what we’re worried it could be. I do know that if that dog dies from the anaesthetic I… I won’t even… I can’t even…
Anyway, I took my dog outside into the car park while my mum arranged his surgery and stuff. I couldn’t get over how amazing he was, how trusting he had been. I had been the only person in the room that he wanted near him, and I’m not going to lie, that made me feel pretty magical. He didn’t understand what was going on, he didn’t understand that the pain was necessary or that it was going to stop, he just felt an unexplained pain. And all it took was a “Good boy! I know it hurts, but you’re being SUCH a good boy…” for him to decide that it was ok. I wish I was like my dog when I was in hospital. I wish I could see through the terror and just trust in the people around me. I wish my dog could be there the whole time.
When we got back to the house, I decided I was taking him for a walk, he’s earned it and he had thought we were taking him for a walk instead of to the vets. He pulls on the lead for everyone except me for some reason, which is helpful, because I don’t have the strength to hold him if he pulls at the moment. My body has been doing much better this past week. Everyone keeps telling me how much better I look. My bloods are as crappy as usual, so this makes no sense, but I even feel better. My body is being weird in an amazing way, perhaps it has just got used to the content rubbish levels of stuff? Who knows? Who cares? I’ll take it!
Anyway, after walking a few metres my leg muscles still scream, although I’m not as out of breath at the minute. I decided that I didn’t care if I collapsed in a heap of arrhythmia or ended up with fluid on my lungs or didn’t have the energy to move for hours afterwards… My dog was getting a walk. He’s my dog. Walks used to be our time together, and before that long, long runs. It’s been months since we walked together. We both LOVED it. Only for ten minutes, because my body got outraged, but he knew not to pull and constantly checked behind to check I was there, so there was never any tension on the lead.
When I got back, I set up the hammock I bought this morning (my mum took me for my first ever pedicure, we were getting along really well, we went to the supermarket and I bought a cheap hammock because I’ve wanted one for ages, she bought my little brother one because he’s all precious to her like that, she shouted at me in the middle of the supermarket, I bought my dog a toy and one for next door’s puppy, went next door and chilled with my surrogate mother and the puppy for 2o minutes, then returned to my parents’ house and took the dog to the vets… And now you’re up to speed).
I laid in the hammock with my book reading for ages, with my dog laying right next to me because he refuses to leave my side.
Eventually of course, my dog ended up curled up on top of me IN the hammock, which I didn’t mind, because I love a good cuddle. Then my mum stood over the top of me. (Background, my knees are shot. The cartilage behind my right knee was crushed when I was 15. Sailing tore ligaments and irritated tendons. My right patellar tendon HATES ME. My right knee dislocates at least once a day and the ligaments frequently strain and partially tear… Both knees hurt and do things they shouldn’t… My mother knows this). My mum stood right over my knees and I was like “No don’t sit down my knees!” But she sat. And my left leg got out of the way in time, but my right knee joint was hyper-extended, with all of her weight on top of it. She laughed and tried to stand up, but fell back down onto the same knee, which I’m not going to lie, hurt a lot more the second time. She stayed sat there for a while, by which point I was shouting at her to stand up. So she pushed off of my stomach to get to her feet… and pressed down on my infusion site where the needle from Bob Jr. (insulin pump) enters my stomach. This time I put the needle right by a nerve so it’s been very painful if I even knock it. To have all her bodyweight through that needle hurt beyond belief. Not to mention the fact that her weight in addition to my 49kg bent the frame of my brand new hammock so that the whole thing wouldn’t work any more.
She got angry at me for saying it hurt. It made her feel bad. So I shut up. We went and got another hammock, and I thought I was walking normally despite the massive pain in the back of my knee (and one of the ligaments I partially tore sailing), but apparently I had a pretty bad limp. Mum wasn’t angry that time, I told her I was fine, because let’s face it, physical pain I can handle (I walked around with a broken arm for 10 days, then a couple of years later wandered around for three weeks while an inpatient in hospital with a broken arm that the doctors knew was broken but I told them wasn’t and just dealt with the pain until they looked at the x-ray properly and shoved a cast on it)… But she decided that I hadn’t been saying I was hurt to make her feel guilty, and I knew she felt bad so didn’t say anything else. I took my pump needle out as soon as we left the supermarket because something ridiculous was going on with it in terms of pain levels. There was a huge lump of insulin just sat under my skin, which probably had a large part to play in my level of pain. I then sat on the needle because I’m an idiot, but I saw the funny side.
Edinburgh this weekend is not happening. I should care, sounds bad that I’m really not bothered, doesn’t it? But I have multiple hospital appointments tomorrow, which means I have to go back to London, for the heart this time. I need a cardiac MRI and I don’t know why but at the minute I’m just done with hospitals and the hospital is really new and nice and the largest heart hospital in the world (I think, at least the country anyway), and it is in a lovely part of London, and the staff are lovely, and my consultant there is lovely, and the theatre team were lovely and made me laugh so much (and last time I had an MRI, while every doctor in the imaging department tried and failed to get a line in me and eventually gave up, the consultant said I looked like his baby sister, and so afterwards took me into the room with the computer and talked me through an entire MRI of my own heart, which was SO COOL)… But I just can’t face it. I am closing down and freaking out at the thought of it. Plus, I am still not well enough to battle the stairs of the London Underground, so my dad is going to drive me and that… That will be… Fun… So I’m reagent that.
But I’m hugging my dog a little tighter tonight, because although there are a lot of big fish in my frying pan at the moment that I can’t even figure out how to blog about, he comes first. I always come last on my own list of priorities to everyone and everything, and that dog has saved me in so many ways, and earned his place in the number one spot. He’s asleep by my feet now, and my mum has started talking about how I will react if he has to be put down. I don’t know. He is me. He keeps me going. So many times that dog has been my only reason for living. I have grown up with him. I named him. I trained him. I slept on the kitchen floor after he had surgery and couldn’t get up the stairs or lay down by himself. He is the only living thing I trust, and I trust him wholeheartedly, with all of me, which is also exactly how much I love him. I have a connection with him that I am incapable of making with any human. Humans hurt me, humans let me down, humans left me for dead, humans made me wish I was dead, and through it all this dog was there. So many times I reached for a hand and found nothing but his paw. When I have surgery, when I have nightmares, when I have flashbacks, when I cry but can’t let anyone see, when I just need to hold and be held, when I am happy, when I have heard things I don’t want to hear at my age and faced things I don’t know how to face… He is there, without question, without judgement, without a thought of being anywhere else… He is right there. He isn’t a dog. He isn’t just a dog. He’s my furry rock. He is my unmoving pillar amidst the chaos and I cannot lose him. But I won’t let him suffer just to keep me whole. If you love something, let it go right? I won’t let him suffer. I’d rather fall apart.
Why am I crying?
Damn. I need to go hug my dog.
No way but through. For both of us. We’re tougher than we look. Together we get through anything, my dog and I.
Her concern went off like a firework. We all got burned. We were all blinded to anything other than it. I looked extremely unwell. We both knew I was losing, we both knew I was back in the medical emergency that put me in the ICU last week. And suddenly she was at breaking point. When she first got home from work she was fine, but then out it all came and she said so many triggering things; she made me feel awful about my health and responsible for it, and she did not understand the mental health issues which arose due to my physical health (that she at that point majorly exacerbated, and then shouted that she didn’t care). She did not understand the effect of her words and she wouldn’t. She just shouted. She said I was pure evil at one point. The words ran like water from a duck’s back, only briefly dampening whatever is left of the glowing ember that once was the fire of myself. I am used to her saying hurtful things in the heat of the moment that my calm and compassionate mother doesn’t mean once she has taken the place of the broken one before me. She has her own struggles, and she thinks we are unaware of them, but they are evident in her behaviour.
I very briefly lost it all. When, after screaming at me for dying in front of her and saying I won’t make it to the end of the month at this rate, my midwife mother walked into the kitchen and started screaming at me for not unloading the dishwasher, it was my turn to go off like a firework… Not at her, but inside of myself – the only place in the presence of my family where I dare be honest about how I am feeling.
So I did something to appease her. She didn’t understand what she was talking about – she hadn’t talked through everything with my consultants like I had. She didn’t understand what was going on. She just thought there was something I could do to change everything and she was furious that I didn’t seem to be doing anything. So I did something. Too overwhelmed (by anger? frustration? hurt?) to talk to her, I silently went and found my insulin pump, Bob Jr. (I was attached to various IV pumps for a couple of years when I was a teenager. I named them Bob – who had googly eyes and a furry moustache stuck on him by the nurses and was my old faithful – Norbert, Ethelbert, Ralph… When I got my insulin pump, I was still in the middle of a long hospital admission and for a few days managed to last with no IV pumps attached to me, during which Bob Jr. and I went to London – with PICC line in tow – and I was told not to expect to feel well at all. There was no longer any Bob in my life, so, as a mini medical pump, my insulin pump was named Bob Jr. He met Bob the IV pump many times because my body is a poop).
Bob Jr. had not been used for so long that when I reinserted his battery and woke him up, he thought it was still 2011. Surprisingly, I still remembered how to use him, and figured out how much insulin I needed to run per hour (I will still be doing injections of a long acting insulin whilst on the pump, which is unusual but necessary in my case). I primed the giving sets and stuck the needle in my abdomen and suddenly I was super excited about the fact that I have to do about 8-1o less injections per day because Bob Jr. just continuously infuses it into me. I should probably have booked an appointment with my diabetes nurse before doing this, as the whole thing is complicated by major issues with highly variable insulin absorption by my soft tissues… But it will make it easier to manage my diabetes and should use up my injection sites less quickly (and also hopefully overcome the absorption issues). This in turn should appease other health hiccups. I am hoping. Also, thanks to the events of the Norfolk hospital admission over the past few days, I am too terrified to contact any of my healthcare teams about anything.
The act of resurrecting Bob Jr. made me have several flashbacks to sitting with a consultant that I still have nightmares about… But I then became super excited to have my old pal back. Bob Jr. and I went through a lot together. I think he was even there during some of the events I now have terrifying flashbacks to, and yet his presence doesn’t trigger them like I thought it would. It’s kind of almost comforting. It’s kind of almost a nostalgia. I will now be less obviously diabetic, which means the whole Type 1 Diabetes health hiccup will be significantly easier to hide. There is, in total, 65cm of wire between me and Bob Jr, which feeds into a teeny tiny needle in my abdomen, held in place by a material sticker about the same size as those they use for an ECG. That is it. So much more discrete. (Some of) my friends will no longer cringe and freak out and make a huge deal when I forget they are present (and squeamish) and go to inject myself in front of them.
Down to only a few injections a day. It will be so nice, because I am genuinely running out of places to do my injections where my body will still actually absorb their contents (which causes HUGE issues, especially when, a few days later, the little lump of medication decides to absorb and I essentially end up unintentionally and inevitably overdosing on stuff that can kill me quickly if I do a bit too much). In taking over for these injections by giving them continuously and much more slowly through a pump, the other injections I do should hopefully be absorbed a lot better because my injection sites won’t be so wrecked (if that makes sense). Also, because it delivers the dosages so slowly, my insulin should hopefully be absorbed so much better. This is the theory. My diabetes team told me I couldn’t go onto a pump because they have no idea what to do with it or how to do it given the other hiccups that complicate my diabetes management (and also this pump is outdated and I should be upgraded to the fancy newer model)… But hey, I have sort of given up on every single health team looking after every single hiccup (which especially isn’t fair on my awesome cardiologist but… Oh well).
I am powerless in the face of other health hiccups; I am very very nearly powerless over my diabetes due to the fact that the absorption issues mean my insulin frequently doesn’t get into my system for a day or few (attracting the attention of the grim reaper and involving close scrapes with his boss death).
Anyway, whatever this was you’ll be pleased to learn this is the end of the post now.
I wake briefly at around 7am and freak out at the laggy image of a nurses uniform drifting by my bedroom door. Adrenaline surges through me as the uniform begins moving towards me, the lagging and after-images of my newly messed up vision making everything ten times more terrifying. Then my mother’s voice drifts out of the figure. She is a midwife. She is on her way to work and has spotted me awake. I am an idiot. Hospital admissions always majorly trigger my PTSD and mess me up for a little while afterwards. My brain peppers waking hours with flashbacks and sleeping hours with nightmares that drag me back to reality shaking and sweating and terrified and buzzing with adrenaline. This is neither, but my brain for those few first waking seconds has no idea what is going on. It induces a fight or flight response and I can feel in my legs and in the racing of my heart that I was ready to run this time.
All of me has wanted to run since the events of yesterday, run away from myself, away from this… And not forward to the future, because the imminent period of that is going to be rougher than I am prepared even to imagine, but back… Back to before it all went wrong. Back to the twelve year old whose health could kill her but was easily manageable, the twelve year old who ran three kilometres a day with a labrador by her side and did more sport than there should have been time in the world to participate in. I want to go backwards, I want to do it all again and appreciate it ten times more, love the three hours of butterfly that I used to moan and groan about when I saw the warm up sheet and realised it was the start of fly week (I hated. Swimming. Butterfly). I want to know which swim training session will be my last. But “I want never gets.”
I cannot think about the future. It is out of my control, in the hands of people who are not willing to cling to it with me. I cannot deal with that knowledge. I cannot bring myself to call them so I can sit in an outpatients department and look into the eyes of a man who I feel let me down over the past few days, who refused to make a plan and refused to get involved in any attempts to try and stabilise me, who decided they just needed to stabilise me enough to keep me off of IVs so he could see me urgently on my return home. I feel my death, should it occur, will be in those hands too. I feel that death, should it occur, will not be far off. I had just over a week between grim reaper visits this time. They didn’t expect me to pull through as well as I did. It was close to the wire and I cannot pretend it wasn’t because I know it was. I am scared. And I am resigned. I realise I am indeed currently alive, which surprises me given how awful my bloods were when I discharged myself from the A&E department last night. I know my bloods will have gotten worse than that. I know I am very much lost within the woods and won’t be out of them for a while.
I roll over and go back to sleep.
My dog became very overexcited when I got back last night. He is laying on my bedroom floor just watching me when I wake up again at 1pm. He isn’t allowed on my bed and he knows this, but he also knows I won’t push him off any more. He puts a paw up on the covers to test the water, and looks at me. I do nothing. He puts the other paw on the bed and half heaves himself up. I smile and pat the bed. He throws himself on top of me before snuggling into the curve of my body (I am laying on my side) and putting his head on the pillow beside mine. He pushes himself right back against me and nudges me until I wrap my arm around him and cuddle him, his tail thumping away.
He follows me around the house, constantly looking up at me to make sure I am there. He is super protective, more on edge than usual, pausing and looking around at the slightest noise before moving himself closer to me, fur on end, tail in the air, staring in whatever direction the noise came from and getting very stressed if I attempt to move any closer to it before he has rushed towards the noise growling and barking, discovered everything is ok and returned with a wagging tail to nudge me until I give him a cuddle. This is unusual for a labrador. This is unusual for him. He is usually clingy when I have been in hospital, but never as protective as this. Does he know how unwell I am right now?
He won’t even leave me to shower (and he is terrified of the noise that the shower makes – always has been, he can’t even bear to be in the same room as it when it is switched on, sometimes he even runs downstairs). He doesn’t seem to be able to stand separation. He seems to want to protect me. I like that.
I eat enough food to feed several people, and then the lovebirds show up. I was meant to just be meeting sixth form friend’s girlfriend, but sixth form friend crashes the meeting and insists on coming along. This means that I third wheel awkwardly in my own living room. I message my fellow third wheel, who just needs some time to himself. He says that in a week or so he expects access to my dog (basically he wants to come round my house) as I promised. I say I will provide food and beer and maybe we can attempt to cook like we also said we would at some point during one of our ICU conversations. We decide this is a good plan, and I decide I may even try to source some gluten free beer, with extra for him to take home as a feeble beginning of my making the last week up to him.
My oldest sister arrives with my 16 year old nephew. They live in Dubai with my brother (in-law) but he is working and could not fly over. Anyway, my nephew decided a few months ago that he wants to go to my old sixth form (which for some reason weirds me out in a not good way, because that was always my space and my life and I was compared to no other family members there, which meant I never came second best to any family for the first time in… My little brother’s lifetime). They have turned up to move my nephew into the house that no longer feels like home but is more welcoming now than it has been at any other point this year.
He will not be leaving. This is now his home and he will be more welcomed than I ever was. He, like my little brother, is the apple of my dad’s eye. I am the blackness of that man’s pupil, the disappointment, the void. No matter how hard I try. (It was even admitted to a family therapist once that he treated my little brother very preferentially, and that arguments between my parents were usually about me, which made me hate myself from a very young age). I feel pushed out by him moving in, especially as my room was intended to be used as the spare room now that he is taking over the actual spare room. I will be one rung lower on the ladder. I am so happy to have him around, he’s an incredible young man and he hugs me a lot (which I appreciate because who doesn’t love a good hug?) which doesn’t really happen with many other people, and we talk even when he is Dubai and I am excited to have him moving in. But it just hurts that I will be even more overlooked here now, especially by my other sister, and the nieces I adore… I am already invisible here. Already unwanted from time to time. At this stage, sixth form friend has left me and his girlfriend to hang out for an hour (we genuinely feel like we’ve been great friends for years it’s quite awesome). I am very aware that she is now fifth wheeling my family (my little brother is also home). My sister is shocked to see me,
“What are you doing here? I thought you were in hospital?” She exclaims. I explain. She says she is never told when I’m in hospital, because my parents don’t tell anyone, and that she is months and months behind and never has any idea I’ve been so unwell or what is going on. I say that I know, and that it makes it difficult for me too because I just want my family to be there and to be around or to have people to talk to that aren’t so stressed out by the whole thing that they end up shouting down the phone or getting immensely frustrated. I also point out that I can’t go behind my parents’ backs and start telling people where I am. Although, as she points out – it’s my life, and I kind of… Can.
Sixth form friend returns (covered in mud from a bike ride by the huge river about a 10 minute drive from my house) and rescues me from the awkwardness by taking his girlfriend and I to get drive-through takeaway. After a small crisis which involves scraping around to find £1.31 to pay for petrol while sixth form friend’s mum makes me feel all the feels with some adorable messages, we go to (sixth form friend’s girlfriend)’s house. Her mum rushes at me with open arms like she has known me for ages, shouting “Oh I’m so happy to see you! Oh darling! Oh you poor poor thing I have felt so sorry for everything you’ve been through this week! Aren’t you pretty?” (The last part is clearly flattery, because I look like death by this stage, and I am by no means pretty. But it proves that people say the most adorable things). She hugs me and squeezes me and smiles and is so excited that I am out of hospital that I immediately love her. We go upstairs and sit for a bit, and sixth form friend says he is third wheeling even though he seems to be dominating the conversation at times. I feel sorry for him. He’s insecure and is facing two girls alone.
My mum is annoyed at me for inviting my sister for dinner, but I return home anxiously anyway to find she’s fine with the whole thing. Dad has been sent to get fish and chips, and I find my sister sat in the kitchen alone. She says I look really unwell. She seems quite alarmed at the sight of me, actually. I tell her I look amazing compared to how I have looked, point out that this is the first time I have been able to walk unassisted, and that I have not been awake for so long without a nap for over a week. She says I should go to bed. I look at myself in the mirror, knowing I should never have left the bed.
My colour has drained and I look kind of greyish. There are huge black shadows around sunken, half opened eyes. I look ill. I look really, really ill. I look worse than I did when I left the hospital. But I look so, so much better than I did a couple of days ago. It is alarming and concerning but I have the energy to do neither and fear and futility stop me seeking help.
Over the next couple of hours my sister keeps going on, saying I look rough, peaky, not good, awful. I listen to music so I can’t hear my nephew and brother playing basketball out the front (a sound that makes me want to join them more than anything like I used to, back in the days when I could run rings around them both in sporting stuff). I message my fellow third wheel, and we end up discussing music because we have very similar tastes in music. He tells me the name of the guy who made the music he played me in the hospital that I really liked.
They leave. I give in to my body. I curl up on my bed with my dog asleep beside me. I wonder about the future. I wonder about the exam results that were confirmed on the 13th of July but that I can’t bring myself to look at. I stress about my first-sits of the exams I missed which will occur in the first two weeks of August, and the fact that the dates have just been released. I focus on university, I work about that over everything else because when all of this rubbish is over I don’t want normal things to have paid the price. It is all that matters to me. It is all I can control right now and all I have. And yet at this rate let’s be realistic I… Can’t say that yet. I can’t entertain the idea of not going back.
My health is currently a huge, huge issue. I feel left alone and let down by doctors and I know that is partly due to my PTSD and the after-effect of previous awful experiences making my fear warp reality… But this current team took me away from a very helpful team at another London hospital who knew how to work with me on my physical health in a way that didn’t have a detrimental impact on my mental health (current idiot, please LISTEN UP).
And I know there is no way but through (until there isn’t, and honestly this time was so nearly ‘it’ that I fear that next time will be the full stop instead of the brief pause that is a comma).
But sometimes it’s just easier to run.
“It’s easier to run Replacing this pain with something more It’s so much easier to go Than face all this pain here all alone
Something has been taken from deep inside of me The secret I’ve kept locked away, no one can ever see Wounds so deep they never show, they never go away Like moving pictures in my head for years and years, they’ve played
If I could change I would take back the pain I would Retrace every wrong move that I made I would If I could stand up and take the blame I would If I could take all the shame to the grave I would
It’s easier to run Replacing this pain with something numb It’s so much easier to go Than face all this pain here all alone
Sometimes I remember the darkness of my past Bringing back these memories, I wish I didn’t have Sometimes I think of letting go and never looking back And never moving forward so there’d never be a past
If I could change I would, take back the pain I would Retrace every wrong move that I made I would If I could stand up and take the blame I would I would take all my shame to the grave
Just washing it aside All of the helplessness inside Pretending, I dont feel misplaced Its so much simpler to change
“Four legs good, two legs bad” – George Orwell, Animal Farm
I took my pillow and looked at the bed I haven’t slept in since returning to this house – the bed that will be going soon to make way for a spare one. My bed. I refused to sleep anywhere but there and nobody saw the point in arguing with me when they saw how worked up I was. There was stuff piled all over it, but I managed to clear the top third of the bed, clambered over piles and piles of my childhood to shut one of the curtains, and curled up under a blanket that has been washed so many times it is barely soft any more. Finally able to share a room with my dog again, and careful not to shut the door (because if I do, it can’t be opened and I get trapped in the room for ages) I put my headphones over my ears, turned the volume up so loudly that I couldn’t even hear my own thoughts, and relaxed into a little bit of punk rock (my music taste is extremely varied and changes like the wind depending on my mood, but last night my brain decided only punk rock would do) as the drum beat drowned out that of my heart.
I’d turned around every mirror. I didn’t want to look at myself, I couldn’t stand the sight of myself, especially as I kept crying (which always makes me want to slap myself because crying makes me pretty furious at myself). With the presence of my dog in the room, I cancelled my half-hourly alarms, confident in the knowledge that he would wake me up if the grim reaper came knocking (and at that point not caring too much if he didn’t). Emotionally and physically I was exhausted. I hadn’t been sleeping properly for a long time. Not only did I manage to sleep for more than a couple of hours.. I slept right round until midday (I woke up a couple of times but managed to drift right back off). Because I stayed in bed, my dog did too (he usually likes to get up at half seven, but didn’t wake me up today, and decided to babysit me instead). He tried to get as close to me as he possibly could, which meant he was half under my bed when I woke up, and I’ve missed that. It made me smile. I’d woken briefly a couple of hours before to hear him running back upstairs, and watched as he gently crept into the room, curled up beside me, and just watched me breathe. When he noticed I was awake a few hours later, he flew at me, tail wagging so hard his entire body swayed with it.
I was glad that there was nobody else in the house. I am still unwilling to face the company of humans. Dogs and death are pretty much the only companions I am willing to consider entertaining, and the only ones who have yet to let me down. When I was in my mid-teens, I decided I would never trust, believe, or put myself in a position where I had to depend on humans ever again (after being severely let down by people who left me to get beaten every day, and simply stood back and watched, leaving me to the mercy of a situation they had the power to prevent). I broke my rule for a doctor, who was ok at first, until he very nearly killed me, acted unprofessionally, caused huge rumbles in the jungle of our family by attempting to intervene in the dynamics of our familial relationships, and whose face I frequently see in my nightmares (I still get an adrenaline rush at the sound of the guy’s name, and the things he did contributed the the development of my PTSD). He thought he was helping, people usually do. Instead, he killed the person I was. As my physical health deteriorated under his watch, and his actions occasionally made things worse because he didn’t know how to handle such a rare and complex case (and refused to ask for help initially, until the damage was done, insisting that he was helping me and could manage despite the frequency with which the grim reaper almost took me), I realised that help is far more dangerous than circumstance could ever be. After that I couldn’t trust anybody. I couldn’t even love (after all, isn’t that the sincerest form of trust? Relationships with my family members were strained beyond breaking by my physical health. They resented me for everything they were going through, and at times I was persuaded by nurses to resent them back). No exceptions. It hurt, and it was a lonely way to live, and I felt so lost and alone… But it was safe. A thousand times bitten, two thousand times shy.
“Where there are no expectations, there is no disappointment.” – Charles Krauthammer
As a result, I now instinctively read between lines and fill in the empty space with my worst fears. I still question everyone and everything because I’ve been let down so badly so many times before. Trust has torn me apart – it is, in my eyes, the most dangerous weapon. And I was doing very well at withholding that trust from anyone. For years, in fact. Until my uni parents came along and worked persistently and ridiculously hard until they tamed the wild animal of my expectation/ fear, and proved to my terrified brain that they could be trusted. Words weren’t enough to assure me, but their unwavering presence was. Over and over again they said that I could count on their support, and I always, always doubted them. Until I fell for it. And before I was even aware I was willing to trust them, they had taken it all. I was terrified of that, but it felt good to finally be able to trust, and I still have no idea how to take it back from them. I tried to extend it beyond them, because I thought maybe I was ready, but nobody else was as patient as they had been and I quickly withdrew the olive branches I pushed out towards people. The persistence of my uni parents didn’t last. I shouldn’t have let them care, but after a couple of months they quite rightly saw some level of sense moved on with their lives… Just as my future became particularly bleak and I needed people to be there more than ever.
I learned, slowly, to support myself; although, the stability I offered was nothing near to that which companionship can provide. I began to look forward to things I couldn’t be certain of. I doubted and doubted but soon I had to allow myself to get lost in my denial hope in order to avoid falling apart. And that was where I was stupid, where I went wrong. Because everybody is the same. Everybody lets you down; some unintentionally, some out of pure selfishness, some because they genuinely have no idea how much their actions mean to you or how much you have come to depend on them. Some… Out of the same fear that you are living through but cannot escape because you are stuck being a part of your body.
But either way, when I was reminded of this last night, I was incredibly angry. Just for a moment (ok so quite a few consecutive moments), I was sick of everything. I considered buying a train ticket and waiting for my next brush with the grim reaper in a less stressful environment. Instead, I went into the soon-to-be-spare room (which is currently still mine), had a small cry, and phoned my grandparents. My mum was out, or I wouldn’t have called my grandparents, because she doesn’t like to drag them into the mess of me I think… However, knowing she would disapprove of me contacting them but wasn’t actually there to stop me, and desperate to feel less alone… I just called them, spoke to each of them to ask how they were, and let conversation with people who misunderstand my health stuff a lot but who still manage to overlook it and have normal conversation with me… Take me away instead. We talked about them, about uni, briefly about the flatmate situation, laughed about my mum’s shoes and her day out (her workmates all got a mini bus to Royal Ascot)… About how difficult my grandma found it to have my mum falling apart and also know of the impact it was having on me, but not be allowed to get involved (an issue I had clearly bypassed)… About how scared people are of my health and how worried she’s been to have me to stay (I pointed out that I’m 20 and had saved my own life more times than she could count, and she relaxed quite a lot when that sunk in)… Half an hour later, I hung up the phone (having been asked to leave downstairs so that my little brother could play on his games console, which led to me feeling totally out of place in this house, and was what made me want to phone my grandparents, because they always like to hear from me and it make me feel less out of place in the world) stared at my room, and suddenly wanted to run. From the planet. From my family. From this house.
“If I stay there will be trouble, if I go there will be double.” – The Clash, Should I Stay or Should I Go?
Instead, I let gravity pull me from where I was perched on the edge of the bed, and fell onto the floor beside my dog. We hugged until we both fell asleep.
Later on, I spoke to the two friends I refer to as My Fellow Banana and My Fellow Fish (TRULY AWESOME, thank you both so much), but I don’t think anyone really understands how much it hurt to be let down again. I don’t care who did it or why it happened or that I now probably won’t have a flatmate and therefore have no idea where I’m going to live and as a result my second year of university may be impossible (ok, so I moderately care about this, and will freak out about the true gravity of the situation after I get over the whole reminder that humanity is a whole sewage plant of poop). I have been let down yet again and I don’t know how to get up this time. It’s a teeny tiny thing, but it seems to be the grain of sand that tipped the scales.
I have spent the entire day (which isn’t a bad day because HELLO HOW LUCKY AM I in so many ways? It is just slightly less great than other recent ones) curled up with my dog, who seems to be aware of my mood, and wants to be hugged constantly, has insisted on bringing me all his favourite toys, and refuses to be separated from me even for a second (which right now feels awesome). Pink Floyd and The Clash have kept us company all day (if you don’t know those two bands where have you even been? Their music is awesome and you’ve probably heard it but not realised it and seriously though where have you been?). When my family get home, I will retreat to my room again. We’re all less broken under that circumstance.
Great. Too slow. Dad and brother are home. Straight in the front door, and immediately I’m in trouble. Stomping around. Slamming doors. My heart just hit the floor. And then in comes the little brother a few seconds later, wishing I wasn’t home so that he could just walk in and play his video game. Wishing I wasn’t here… Wouldn’t that be nice?
“I’ve got a strong urge to fly. But I got nowhere to fly to” – Pink Floyd, Nobody Home