How Did I Get Here? – Thoughts on Starting Another Degree

I’m not ok in any sense of the word; physically my heart is struggling, my body has decided to become spectacularly anaemic, and my health continues to hiccup. Mentally, I am in a complete crisis and have been for some time – I don’t know how I’m alive, simply because I’ve no idea how I persuaded myself not to ensure that outcome with my own hands.

But right now I am on a bus. A new version of the old London Routemaster that my granddad used to drive along this route for a living. I am on my way to a new university, to start a masters in cardiovascular science (a very competitive course at a world leading university, that somehow and for some reason picked me). This is a day that for the last three years was something I very hypothetically talked about from time to time. I still can’t believe I survived and acquired my undergraduate degree, let alone that I’m about to start a graduate degree that will hopefully give me the qualifications to make sure that someone else’s future differs from my past and my present.

I’m going to hold my hands up and say it has been a struggle. I denied myself any admission of this reality until I was completely broken. It’s hard. Everything right now is overwhelming and everything is a struggle I no longer have the mental energy to know how to face. But I’m here. I’m somewhere even I never thought I’d be. I’m terrified. I’ve spent days having anxiety (a very unpleasant new addition), nightmares, random crying moments and all sorts about this day, because I didn’t know how to do it. I have been dreading it. Now it’s here and I wonder how on Earth I made it. How am I alive? How did I manage to pass my third year without attending a single lecture, becoming bed-bound, losing most of my friends and replacing their messages with those of paramedics and doctors and other people who understood how it was simply incredible that my body (let alone my brain) could still function. The word inspirational has been thrown at me a lot and I still hate that. I am buckling and crumbling and have no choice but to keep living the life that has caused me to do that. It’s not optional. If it was, I’d be insane not inspirational.

Anyway. I am about to meet a group of new people at a university where nobody has ever seen me unconscious, where nobody has seen me vomit blood, where nobody has seen me in a wheelchair or being stretchered out of university accomodation. I can pass of as an “everybody else” and that’s refreshing. They have no idea how awful I feel both physically and mentally – how much both elements of me are straining to breaking point. They aren’t scared of my body or to be around me. They’ve never seen me in resus, they’ve never had to give me CPR or visit me in an ICU and sit for hours while I lay there totally or if it with no idea anyone is there at all. They’ve not been on the emotional rollercoaster that is my life. They’ve not received messages at 3am when I’m convinced this near death experience is the one where I finally run off with the grim reaper and there’s nobody else there to share the terror. They’ve not seen me have flashbacks in the back of an ambulance, not seen me vomit with fear at the sound of a siren, they’ve not seen me attached to 5 IV pumps whilst riding the drip stand as a scooter. They’ve no idea how much I carry and the effort I go to in order to hide it. They’ve no idea how much my health issues have knocked my confidence, how lonely I feel or how many years I spent in hospital missing all the milestones they hit. They’ve no idea what a miracle it is that I’m still alive, no idea that my former personal tutor gave me a superhero cape after my graduation because he had never believed someone like me could exist let alone get a degree and a decent enough one to get me into a masters programme.

As far as these people are concerned my biggest stress was deciding what to wear, moving into a new flat, the presentation I have to give tomorrow. They have no idea of the wounds haemorrhaging deep inside my soul. They’ve no clue of any scars or how deep they run. I’m just and everybody else today. And that’s why I’m nearly crying on a bus.

Those days you don’t know how to survive? Those days where you can’t go on any more? Today, like most of those before it, is one of those. And I swear to you my former self was very right.

There’s no way but through.

All you need is half a chance. You’re still here. You’ve survived 100% of the days you didn’t know how to, got through 100% of the things you didn’t know how to cope with. If you can do that, given your record, you can do today. You’re doing great and it doesn’t matter if you have no idea how you got where you are right now, what’s damn impressive is that you’re reading this right now. Thank you, I’m grateful but I’m also rooting for you.

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The Fight Is Over

“Everything will be all right in the end. If it’s not all right, then it’s not the end.” – The Best Exotic Marigold Hotel (film)… A line that was quoted to me by uni dad during particularly crap times, but that I didn’t believe until today.

Yes, yes, yes. So many levels of YES! No more fighting. I’m overwhelmed by a hopeful relief to the point that words are currently failing me. I don’t know where to start. I’m too impatient to go back to the beginning and too stubborn to start at the end (so you’re going to have to read through the rubbish to get to the good part, sorry).

This morning I tried to print emails and type up notes to take to my disability advisor at university to discuss the whole ‘support? Yeah we aren’t going to do any of the things the disability services said’ situation that has been occurring for the last year, and has at times left me suicidal (ok, wow, I’m so over the moon that word doesn’t even bother me right now). Anyway. I became so terrified about the whole thing I ended up a bit of an emotional mess, and spent an hour listening to music before I could re-attemtpt my brief summary. I was terrified about having to fight the university again just to get some support. But I eventually managed to make bullet points anyway.

I went onto campus. Instantly every single part of me was at home. I ditched Winston the wheelchair and outraged my body by walking from the back of the building to the front of it. It occurred to me as I got in the lift that I’d nearly died in that building, which gave me the creeps, especially as it has a morgue in it and is the site of our anatomy practicals. I went to the deputy head of disability services, who I’d met with before, and we discussed everything. He was so supportive. He was also appalled, disappointed, and seemed quite horrified. He called the situation ridiculous so many times that the word started to sound funny. He said it sounded pretty horrendous to have had to go through, which made me feel less embarrassed about the impact it has had on me emotionally at times. He apologised. He shook his head pretty much throughout our entire discussion so much I wondered if it might work itself loose and fall off (yes I know this is anatomically impossible).

He said the staff hadn’t supported me in the way they were meant to at all. We talked about the wheelchair situation. He said they can’t kick me out for not doing assessments due to my health, and that if walking up the stairs in a building with no lift makes me so unwell, it is ridiculous that the practicals weren’t moved. He said allowances can be made for my coursework, so I don’t need to leave the uni if I can’t carry out the practical part of our coursework (which never goes right anyway, so we always look at model results). He suggested I spend another year in halls due to my inability to travel much or walk any sensible distance, and that even though it was past the deadline the disability services could sort it out. He’s going to recommend that all my lectures next year are in wheelchair accessible locations (in case I can’t ditch Winston). And the list went on and on and on (because there’s a lot of crap that I won’t mention on here because it makes me feel so angry and hopeless that I cry when I even attempt to summarise it). He said if ever I need any support at all I should just go to the disability services (he’s my disability advisor) even if it’s once a week just to rant. I found someone to talk to about my health, and it felt good, so I briefly summarised the bleakness I was up against.

I cannot explain how amazing it felt to finally have some support at university, someone willing to fight my corner. He’s determined to make sure next year is very different from the start, and said it was incredibly sad to hear that all I’d cared about was not missing deadlines or getting ill on campus, often to the detriment of my health (because I didn’t go to hospital when I needed to, and often ended up in a heap on the floor). He said he’d rather I just please called an ambulance onto campus. He’s going to change the document the university were given about my health and the accommodations they should make for it, and mention that I’ve been unsupported over the past year (I kept telling him I was scared of the university and didn’t want to upset anyone. He persuaded me to let him just briefly mention it). He asked why on earth I hadn’t been to see him about it all sooner. I said that I was extremely worried that I was making a fuss over nothing. He told me I was doing far from that, and that it was actually his job. I felt better. Actually, I felt happy. Happy. Actual happiness. (This isn’t even the good part yet)

I didn’t really have time to start freaking out about the hospital appointment right afterwards. I got to the hospital at 3:10, and didn’t leave until two hours later. Honestly, in that time… My life changed. (This is the slightly less awful good part)

The man that took away all my hope of a future just gave it all back to me. 

The man who left me to the grim reaper decided that he was now willing to try and save me from him, seeing as how I’m not dead (and he talked about a service dog so that was awesome too). I thought I was going to have to fight with him. I thought he was going to leave me to my fate again and watch me bounce in and out of intensive care until the grim reaper managed to pin me down. I thought the crushing hopelessness his appointments usually induce was going to overwhelm me all over again and I sat there with two of them looking at me, preparing myself for the emotional pain that… Never arrived.

My guard was up and I was terrified, shaking, wanting to throw up, trying to look anywhere but at him… For no reason. This time he talked about heart failure and varied kidney function and stuff that was nothing to do with him (although he really does want to look into the kidney stuff more, but getting blood from me is impossible, which is why I haven’t gone to have the “weekly blood tests” I’m meant to have at all since they told me I had to – I do not want a long line yet. He does however, think I should definitely go and get the bloods done, because he’s all concerned about my kidneys even though I have a separate consultant for that). And then he got around to the bit of me he has to think for, the health issue he is meant to be helping me with

“Well, the situation doesn’t seem to have changed much.” Here we go again,

This is very dangerous. Your body can’t keep doing this (he means the medical emergency that frequently puts me in intensive care and on an almost monthly basis almost takes my life), each time it does you’re at a greater and greater risk of… It’s incredibly dangerous.” Yes, I know, and it’s going to kill me and you don’t know how to stop it because you can’t be bothered to try and…

Have we ever considered (some surgery that had only been done on one person in this country last time it was mentioned to me and is still only offered in two hospitals under very extreme/ desperate circumstances because I don’t even know why)?” Excuse me? What did you just say? Did you just… Did you just say you want to try and beat the grim reaper? DID YOU JUST SAY YOU WANT TO FIGHT FOR MY LIFE WITH ME?  The stunned look on my face must have been misinterpreted as one of horror, because he put his arms up like I was about to shoot him and said,

“Ok, ok… Not necessarily that, but this isn’t a typical case at all… I think with you we’re going to need something… Drastic.” Like what? I think but am still too stunned to say.

“Ok, alright. We’ll talk about it next time I see you.” No, no, I’m relieved I’m not freaking out, let’s talk about it NOW! I just can’t believe you’ve changed your mind about seeing a point in trying to… Try. I suggest another, more common treatment that I’ve tried before, because I’m too stunned to be thinking properly or saying what I want to say, and the one he is suggesting involves an entire new team of doctors at another London specialist hospital where I had horrific experiences when I was younger.

“Like I said, I think we need something more drastic with you if we’re going to get anywhere at all with this.” He says softly, gently nudging me out of my denial. Preferably before it kills me right? Who even are you? Are you real? WHO ARE YOU AND WHAT HAVE YOU DONE WITH THE CONSULTANT WHO WAS PERFECTLY HAPPY TO LEAVE NATURE TO TAKE ITS COURSE??  I looked at my psychologist, who I’d asked to attend the appointment with me because the last one left me so hopeless that afterwards I was so much of an emotional mess I couldn’t even walk and even cried in front of the doctors. She smiled at me. I looked back at my consultant, sat in his chair, and then behind him to the kitchen window of the flat I used to live in (in my university halls, until a week ago).

Yes, everything else going wrong in my body is going wrong, and no, he can’t stop this or fix the issue or deal with anything else – but I’ll be back to the same chance of dying as everybody else who has this condition (well… only in regard to this condition, but this is the thing most likely to kill me and most IMPOSSIBLE to fix, so that’s awesome), and that’s all I want. In the meantime, I’m probably going to nearly die again, and I’m prepared for that. Maybe this time will be the time we don’t win, maybe this time will be the time that the grim reaper manages to get me to elope with him. Maybe this is too little too late. But beyond that almost inevitable event, I think there is hope… Hope where there once was a let down. And with hope, who cares what happens? Because there’s suddenly a point in holding on and a lot more to hold on with.

No more fighting to get support from the people who I rely on for it. No more fighting to stay alive alone. No more fighting to convince someone that my life is one worth fighting for. No more fighting for this consultant to try for me… No more fighting. No more wearing myself into the ground. Who cares if there is fresh concern about my kidneys?

Today was amazing, even if the points about my worsening health were far from it, because suddenly I have hope, suddenly this consultant is willing to try like I needed him to. And when I got back to my parents’ house my dog was there and the two new books I ordered online had arrived (one of which is another Remarque – Spark of Life).

So today my life changed. Genuinely. A single consultant made that much of a difference by doing what I wish he’s done months ago when he pretty much gave up (seriously, thanks to him, I very nearly didn’t make it to 20).

“Change is hard at first, messy in the middle, and glorious in the end.” – Robin Sharma 

I didn’t believe the end of this quote either, but as music flooded my ears on the way home, it was all I kept thinking. I also kept thinking that uni dad was right, and part of me wanted to tell both of my uni parents that there was hope now, that they’d got me through the hopelessness and they were both SO RIGHT. But I can’t talk to either of them so… Anyway. The relief is indescribable. Finally someone at uni, and the consultant who gave up on me, are on my side.

The fighting is over. 

This is all going to be ok.

Yeah… I Can’t Think Of A Title

I miss London. I can’t tell you exactly what I miss about the place where I’ve always felt I belonged, because in truth, I miss everything. London is home. I have lived there, nearly died there, walked its streets at night, fallen apart there, had my first kiss there, ridden the highest highs and the lowest lows… London welcomed its arms to me when I left home for the first time; when I was a younger teenager during hospital admissions I always spent a day in London with my friends if I was let home for a weekend, or sometimes I’d be let out for the day just so I could drag my family (and a PICC line and an IV pump) there… And seeing all the TV coverage of the queen’s 90th birthday celebrations, and the skyline I’m used to seeing from the window of my flat, made me yearn for home. Seeing the hockey they are playing in the olympic park, which I could also see the other way from my window because I lived so close to it (and hear, and see the lights reflecting back off of the clouds if there was an event on)… Made me miss the flat I’ll never live in again (but then I remembered the kitchen and the hygiene levels and was glad to have escaped). I wanted to be in Mile End. I wanted to be wandering around Barbican or be by the Thames or walk through Richmond or lay in Hyde Park again. I wanted to lose myself in the city where I finally felt… Found. And then it came.

I miss uni. I miss lectures. I miss learning and thinking. I miss campus. I miss the building with no lifts that almost killed me (Literally. I usually ended up in resus a couple of hours later) every time I had to get to the second floor to do a histology practical. I know I said I’d have a month off of studying and freaking out about exams (because I won’t sit the two I missed until August) but exam stress is already starting to bubble away again and… I figured out who I am. Or at least, short-term, who I want to be. And I decided that I want to start revision now (basically just start looking over lecture slides on my phone to fill ‘The Void’). Because all I want to be right now, with every single part of me… Is a second year undergraduate Biomed. student. I am this degree, and this degree is me; and as long as we are together, I realised, everything will be ok.

Reading is occupying my mind some of the time (All Quiet On The Western Front – a feast for the A level english literature student part of my brain that still lives on), and Breaking Bad has me hooked. But there is something missing. There has been a noticeable void, and my writer’s brain seems to have fallen into it right after I promised I’d finally test the water and agree to write a magazine article (which is so. Totally. Not. Happening. Because who was I even kidding when I thought I was well enough in a fit enough state to do that? And what do I even write about because has anybody read the junk I produce?) I tried writing some of the new pile of utter trash novel I’ve been working on, and writer’s block reared its ugly head.

I can’t focus. I can’t stay ‘with it’ long enough to achieve anything before I am dragged back to sleep or have to fashion another rudimentary IV in order to save my own life again (I also don’t think staying out of hospital is going to be a possibility. I keep ending up in the same situation as the other day without warning. I realise far too late because my body is in such a constant state of “too close to death” that I don’t get particularly symptomatic when it gets to the whole “very extremely close to death – hours away – unless you do something NOW” state; by which point it’s so late that I collapse a couple of times after using teeny tiny needles to hit teeny tiny veins because I can’t find any other usable ones, and just have to hope that what I did will hold me for another few hours before I have to do it again, or at least mean that I will at some point wake up and not have to bother anyone. Not even an entire day now. Hours. Not. Good.)…

I open lecture slides on my phone… And none of that matters. I am lost again, wallowing in pools of knowledge that overflow from the brains of the people who took the time to make the slides. I can read the slides one or two at a time and spend hours on the internet feeding the interest they spark within me. I can read them two at a time, and give in to the sleep, and wake up and pick up right where I left off.

I hoped to be a doctor, but I look at myself now and know I will be lucky just to survive this three year degree. So I… Let. Go. (Not sure I saw that one coming either. Well… I sort of did, but denial is my best friend and I didn’t expect it to back away so easily). Maybe someday I’ll be fixed enough to complete a medical degree, and then I’ll be living the dream. But for now, that door has been slammed and locked and there’s a tiger on the other side of it. This degree, and the city of London itself… Has opened up so many more opportunities for me. I considered medical/ science journalism when I was trying to pick a degree. From time to time I consider throwing everything away and pursuing writing more seriously, especially when I’m asked to write for magazines or whatever. I occasionally consider pursuing my art as I’ve been encouraged to do (although  I still can’t comprehend that people keep offering to pay me so much for a sketch or whatever). I consider taking my camera and watching the sun rise over the city over various months, because I LOVE photography (which became my love when I lost the ability to draw). If I make it through this degree, I want to move to Cornwall and settle down, maybe do a graduate degree in Plymouth or even stick around in London. Maybe go into research or journalism. Maybe attempt to get a PhD. Maybe publish some of the stuff I’ve written in between. Sell t-shirts with health puns on them. Have an awesome summer. Live.

I want to live again. I want to feel alive.

“Find the place inside where there is joy, and the joy will burn out the pain.” – Joseph Campbell

Thank you to the person whose comment on my previous blog post put me in the sort of mood where I was in a suitable place to realise that all is not lost (and also caused me to nearly drown in a tidal wave of feels). And thank you to my incredibly talented fellow fish (long story – we promised each other that through all the rubbish we would “Just keep swimming” – yes that is a quote from Finding Nemo and yes we are making plans to go to Brighton or Bournemouth and go see the new film and then go to an aquarium and find an actual Dory…) who mentioned me in her own blog post earlier (which I will link to at some point), and said the sweetest, most incredible things about me which were not deserved at all but also induced considerable feels.

Also, thanks to my cousin, who is 13 and earlier sent me a piece of school work she had done at some point about her inspiration – me. I nearly cried. And then I… Nearly cried. And then I… Nearly cried. And then I asked her if she genuinely thought the things she had written, and she started telling me how much I’d inspired her and stuff (which is unusual because me being ill usually irritates the people I live with, so for a family member to find me an inspiration because of it and my desire to become a doctor and “help other people and support them”, as she put it, was unexpected). Somehow it meant more coming from a 13 year old. Someone looks up to me. Actually looks up. To me… Thinks that I am genuinely inspirational enough to tell other people about. And I mean… I don’t see why she thinks that, but how could I ever want to be anything more than this? Than what I am right now?

It all made me feel like someone… Worth being. Just as I am. So thank you all.

The Internet Came Through/ Far Beyond OK

“YOU DON’T NEED ANYONE’S AFFECTION OR APPROVAL IN ORDER TO BE GOOD ENOUGH.”

Well that grabbed my attention (maybe yours too?), and not just because it was all in capitals on my phone screen. I kept reading the rest of the paragraph, which thankfully was not in capitals.

“When someone rejects or abandons or judges you, it isn’t actually about you. It’s about them and their own insecurities, limitations, and needs, and you don’t have to internalise that. Your worth isn’t contingent upon other people’s acceptance of you – it’s something inherent. You exist, and therefore, you matter. You’re allowed to voice your thoughts and feelings. You’re allowed to assert your needs and take up space. You’re allowed to hold onto the truth that who you are is exactly enough. And you’re allowed to remove anyone from your life who makes you feel otherwise.” – Daniell Koepke

This was originally posted here

And that, I have discovered, is how you start a day right. The internet came through for me this morning, and spat out the exact words I needed to read in light of recent thoughts and feelings. It struck such a chord with me; it addressed all the things I wouldn’t allow myself to do, and quashed the self hatred that had been growing into an unmeasurable force so perfectly that I felt as though it had been written specifically for me. Frequently I stumble across bloggers who take my breath away, whose writing moves me, but it has been a long time since anything has struck me on such a personal level. What I’m doing is ok. I thought, and then… I am ok. And thinking that, thinking something that is now so alien to me, felt amazing. There was a seismic shift in my mood so great it went beyond the limits of the richter scale. Why is it ok for everyone in this house to vent their feelings towards me, and yet I can’t express the hurt I feel or the emotions I am trying to deal with, because they don’t like to hear it?

I was not so long ago encouraged to talk to a certain person in this house about my emotional state (which at that time was particularly bad due to the worsening physical things that can’t be fixed – still not mentioning them, denial is officially my new home), until I actually tried to confide in them about it and they tried to shout my depression and PTSD out of me because it frustrated them and they found it too irrational to understand (which made me feel stupid and ashamed and weak…) Anyway. Reading the paragraph I quoted above led to a chain reaction of me questioning all the behaviours I hate myself for, and step by step having thought processes that went a little like this:

Self, maybe you aren’t a complete butt-hole for wanting some support from your family, maybe you aren’t a monster for sharing the way you felt with someone who you loved enough to try and confide in. Maybe it just makes you human. It isn’t your fault that she didn’t know how to deal with it either. It isn’t your fault that the conversations swiftly ended with you being shouted at due to her frustration. You threw emotion at her that was too hot to handle, it burned her too, and she reacted in surprise, without thinking. You were just looking for help and you didn’t know where else to turn. That isn’t a bad thing. Congrats for having the guts to step up and take a shot when you could barely support yourself. Why have you been ridden with guilt and self hatred for so long? Because she told you it was selfish? This seems quite stupid, now that I look back on it, you are your own person. You are whatever you think you are, right? Maybe? Except a screw up – maybe we aren’t one of those after all. Maybe we do actually deserve this space on the planet. Maybe we aren’t a waste of anything, not medicine, not space, not even air… 

Do you have any idea how it feels to think like that after years of slowly detaching yourself from who you are out of shame and self loathing which spiralled out of all control? Do. You. Have. Any. Idea?

“Unfortunately, the people who are supposed to love us aren’t always able to give us the kind of love we need. Whether they are our mothers or our fathers, out grandparents or our siblings, some family, no matter how good their intentions, leave us feeling empty, invalidated, uncared for, and alone. And on the days when that pain becomes too much to bear, our work is to recognise that those people whose love we so desperately pine for are never going to be able to meet our needs. Not because they don’t care, but because they can’t change who they are” 

Their scant affection isn’t a reflection on our worth. It isn’t even about us. It’s about them and their own limitations and struggles. It’s about their unique way of expressing love and the fact that it doesn’t match up with our own. And we don’e have to internalise that. What we need is to start reaching out to the right people. We need to create a family of people outside of our family. People who can meet our needs and reciprocate our love.”

” We need to appreciate our families for the ways in which they are able to show they care, and be accepting of the ways that can’t. We need to make peace with who they are and if necessary, we need to give ourselves permission to let go. We need to know that our worth isn’t something another person’s love can give or take away. We need to trust that without their affection, we are enough” – Daniell Koepke (again, I mean what an amazing human)

Daniell Koepke is an undergraduate psychology student who set up the Internal Acceptance Movement (I.A.M) (which also has a Facebook page) as an online space to help people overcome their struggles, after recovering from an eating disorder. I have also concluded that she is an awesome, inspiring and insightful human being (her story is pretty awesome). I hope she doesn’t mind me quoting so much of her material! (Ok now I’m terrified about that)

I took the risk of quoting so much of someone else’s material because I know quite a few people who I think also need to read it, and if you think that’s you then yes, it so totally was!

Today was a good day. A really, really good day. It rained torrentially all day but it was warm and I love listening to the rain. I sorted more of my room. I read some of my book. I cooked, properly cooked (because I love to cook up things using random ingredients). Now I think I might draw. And that’s all ok. It all felt ok. I felt/ feel ok with being me. And that in itself is far, far beyond ok.

I’m doing good, I think.

I’m Almost As Scared To Post This As I Was To Say It

Since I decided to try and consider myself a little more (or at all, actually) things have been a going a little differently. Today I decided to call my family members out when their treatment of me made me feel belittled or if I thought it was unjust… I haven’t really done this before, I haven’t really stood my ground (certainly not calmly and rationally without tears) and to be honest, I didn’t think I would get away with the whole “please stop treating me like a child”, “please don’t talk to me like that”, “would you speak to another adult like this? So why me?” thing… But, after a few arguments (which didn’t involve any shouting), they gave up with the smart remarks and ridiculous reasons and just sort of rolled their eyes and let me do what I needed to do – let it all out.

(Warning: you are probably going to hate me as much as I do by the end of this post).

I showed them how they made me feel by talking to them in the fashion that they sometimes talk to me (while laughing, because I found imitating my mum particularly hilarious). e.g. When my mum said her ear hurt, I playfully ranted at her about how all of her was broken and I couldn’t deal with it any more, and asked her if she could never just be ok for once. She was’t very impressed. I kind of needed her not to be for the message to get through, to make her think about the things she says to me sometimes in the heat of the moment, when she asks me how I am and I give her the honest answer she claims to want (which is usually I don’t feel great, but it’s ok). It was the only way I could think to make my point, to show her how it feels. I playfully criticised her for short periods a couple of times throughout the day, but rather than getting my point she seemed to just zone out and think that I was being particularly annoying (and suddenly talkative).

“Will you just stop it?” Whatever the reason, it had a negative effect almost instantly.

But I had a point to prove. After yesterday and the thoughts it threw up, I’d had enough – enough of being made to feel like a substandard human being in what is some of the time referred to as my own home. I wanted someone else here to understand the impact that constantly feeling like you’re letting someone down, of falling below par, can have on your mood. The difference was that made it clear that I did’t mean it. And on a couple of occasions I think I wasn’t the only one that saw the funny side of my attempts to impersonate people. One thing was certain – I was not letting it go until I’d made my point in concrete, allowed it to set, and built a house on the foundations.

I hadn’t really dared to be so persistent with a point before – my usual response to the outlet of their justified frustration (I understand that the things my health puts my family through are not fair on them at all, they have to watch it, and I think watching is worse than experiencing the pain that I quite often don’t remember first hand) is to hang from every word, replay things they said in frustration but didn’t actually mean, and drown in the lava of the self-hatred it all induces within me. But no matter what I do, it seems to end up wrong (entirely my fault, not theirs). I fall short of what they are quite right to expect of me. I feel like a failure when I screw up, because I try to think of myself from their viewpoint and I realise that I am a totally rubbish excuse for offspring, and not at all what my mother probably imagined I would be.

This morning I was stood in the kitchen preparing to dive into a pool of self loathing in response to a few comments, when I suddenly realised that trying harder while maintaining this outlook was not going to make any of us happy, and that maybe the way to break that cycle of feeling more and more like a complete sure up was to stop looking at myself through their eyes and teach myself to focus on the person in my mirror -me. From my own eyes. From my own viewpoint. From my own mind. And by default, when I am a good enough human being for myself to accept or tolerate, I will be a good enough person for them. And they might be happier, which is all every single part of me wants for my family – what they deserve. Until I can accept myself, it is unfair to ask anyone else to do the same, and the self hatred generated by my guilt will always warp reality into soul destroying situations until I learn to switch it off.

No more hurt, no more dismay, no more frustration – I want to make them smile. I want to stop being the cause of their pain and (completely justified to be honest) anger and frustration that my life sneaks into those of the people around it. So I tried to show that I have had enough of this endless downward spiral of crushed self esteem. I realised in that moment that I did;t have to stand for it any more. I wanted to be happy too, and I needed someone else to realise that I am making an effort to be something I haven’t have the confidence, or, I felt, deserved the privilege of being, for a long time – myself (admittedly I’m not even sure what or who this is any more, but I finally want to reinvent whatever that may be with the things that my health has yet to take from me).

And it felt empowering.

It felt so, so good.

And it’s so, so selfish. But sometimes (a lot of the time. Most of the time.) it feels that in this house I make sound waves, but my voice is not heard. They want to tell me how my health issues and everything make them feel, how difficult it can be to have me around, but build a defensive wall of decibels when I try to level the playing field and gently explain how I feel too, how sorry I am that they have reason to feel that way, that they ended up with me. I’m not sure what makes them argue before I can make my point – guilt? A refusal to accept that just because they don’t mean things in the way they come across, I can’t be hurt by them? A belief that Oh for goodness sake! I blow off like a fuse, I didn’t mean that! puts back all the tears that I cried?

I am an independent adult, and today, I finally felt like one in this house. So judge me if you want, hate me, shake your head, tut, roll your eyes. Nobody is taking that away – I’m no longer trying to look at myself through everyone else’s eyes, and it’s so hard and I often hate myself for it, but it’s making me feel more positive about who I am, and less of a waste of space. I finally feel like someone (just about) deserving of a place on this planet, and now that I’m focussing on trying to save myself a little bit instead of just wanting to save everyone who knows me by removing myself from their lives, I consider voluntarily surrendering my existence to the grim reaper a lot less. That feels nicer than I ever imagined it would.

The only way I can think to make them happy, is to try to be genuinely happy myself, to try viewing myself equal to the people I care about (and everyone else on the planet) instead of far below them. And the only way to do that is to stop caring about what their tiredness and frustration makes them say occasionally, stop blaming myself for EVERYTHING, and block out even the justified negativity, in order to persuade myself that I am someone worth tolerating, worth standing  by, worth being around. And then maybe I might believe that someone else will. Maybe my smile will return for good. And maybe then my family will be able to smile too. I felt utterly and shamefully selfish for doing this, until I somehow stumbled across this website about the line between putting yourself first and being selfish (which made me feel like less of a complete —insert rude word of your choice–)

“When you say yes to others, make sure you are not saying no to yourself.” – Paulo Coehlo

“I have come to believe that caring for myself is not self-indulgent. Caring for myself is an act of survival” – Audre Lorde

“That’s the problem with putting others first; you’ve taught them you come second” – unknown

I don’t intend to put myself first – I just want, even for a few seconds, to place myself alongside everyone else. To feel equal, worthy… It’s just difficult – so, so difficult to come anywhere close to this for more than a couple of minutes. I’m working on it. I hate myself for it, but I’m trying to push through that. Usually I just try to only depend on myself because of quotes more like the following:

“I don’t like

depending on people

because people

leave

all the time.

Because at the end of the day

all you have is

yourself

and that has to be

Enough”

A.M

But I’m trying to force that to change.

(Tomorrow’s post will talk about puppies, totally come back for that)