I am trying to unscramble my thoughts to formulate some sort of thing worth reading, but it is so hot that all my thoughts seem to have melted together and seeped out of my mind like melting ice cream. Today has been a day of sticky, humid heat, a missed hospital appointment (because I’m a COMPLETE idiot), and… Friction. Family life is difficult to deal with after you’ve lived alone for a year, surrounded by other students and in the freedom of London.
Caution: I need to have a moan. I am going to moan. This post will probably be one great big long pathetic moan that you will find ridiculous and I am sorry for that but I just need to let it out and this blog is the only place I have to think out loud. Sorry. Do me a favour and don’t judge me? We’re all human. We all just feel a bit BLURGH sometimes… In comparison to the mountains in my path these are mere grains of sand now elevated to the status of mole hills, and they’ve all melted together into a confused mess, hence the title. By the time I get to the end of the post, it probably won’t even look like such a mess any more, which is exactly why I blog. But anyway, here it is (there’s a very important thank you at the end).
I like my own space, in the past I have always felt like a second rate human in this house, and I’m not treated like an adult here. I want space to malfunction. I want space to let my health hiccups hiccup without being shouted at because of the frustration and stress this causes to my parents (who do not seem to understand the nature of my health hiccups at all or understand the impact they have on me physically and emotionally… Then again, they don’t know everything, and I can’t stand the idea of trying to tell them). I want space to be unwell and be able to focus on keeping myself whole emotionally and physically alive, rather than worrying about hiding how unwell I am to protect people I care about (but who in the heat of the moment say I am ruining their lives and I am evil because they don’t mean it but they can’t handle the health junk, and don’t seem to pause to think that I can’t either).
I don’t want to have to plaster an obvious but false smile on my face in order to avoid questioning and somehow irritating my parents if I don’t look happy ALL THE TIME. I want to just be me. I want to feel the things I am forced to bury here and let them out and process them before they eat me alive. I want my food to be untouched by anyone else after I plan meals with it, and I don’t want to walk downstairs and find my little brother wearing my t-shirt like I did this morning (he was horrified to find he was wearing a women’s t-shirt, but in his defence it was plain and did actually look very fashionable on him, you couldn’t tell), or have him bring one of my hoodies out to the cinema with us (which I wouldn’t mind if he asked, and was an accident, but I’m touchy about people just taking my stuff no matter what the circumstances).
I don’t mind sharing my stuff when people ask, and if I do share anything with you, or let you share stuff with me (especially food!) it means we are TOTALLY cool. But my stuff is my stuff. Since spending a couple of years living in a hospital when I was younger, and lengthy admissions sometimes for months at a time after that, I realised that the only thing I could always control would be my stuff. Not my body. Not my health or my blood or people’s reactions to me & my health, or who stayed in my life and who walked away, or my actions (because when you’re tied to IVs and living on a children’s ward there are limitations). Just my stuff. On one admission I became kind of obsessive about my stuff, not because it was mine, but because it represented my only control over some aspect of my life. It was the only thing left. I felt almost violated if people moved my things or changed my bed or reorganised the stuff on my table because they thought they were tidying up. I would feel totally out of control and stripped bare, like there was nothing at all left and it was all gone, and I would curl up in the chair and try and fail not to cry, frustrated at myself for being so illogically pathetic. It’s weird. I’ve mostly shaken it off, but my stuff has more than a material value and when I’m already stressed out, that little bit of me re-surfaces BIG-TIME.
Which brings me on to my main thought. I cannot stay in this house for very much longer. My family have been very, very nice and good to me over the past few weeks; there have been no fireworks this time, just the occasional argument. No leaving because I need to get away from the toxicity of a certain person’s behaviour. Nowhere to leave to even if I wanted to. But my patience is wearing thin. I’m tired of being misunderstood (mostly in terms of my health and my severely overestimated physical capability and expectation to do chores when I can hardly HUMAN) and treated the same as my 13 year old brother. Correction – he is the younger child, we are not treated the same (especially by my dad, who has a CLEAR favourite – the kid who shares his blood is the one he obviously adores. I do not even get hugs, and yet they will cuddle up on the sofa together. Used to hurt. Made me feel like crap when I was a child. Used to it now. No longer want any visible displays of affection from him, in fact, they weird me out and I FREAK OUT – we shall leave that one there). My brother gets what he wants, he gets away with far more than I ever did, and he treats me like he is my superior. I don’t argue with him. I get annoyed sometimes. I curl up on my bed and close my eyes and long to go back to London and feel like I’m a bit of poop, and then my dog looks at me like the sun shines out of my butt
onhole (this computer is too polite) and I feel all wanted and loved and that’s all anyone ever wants so it’s all good. But today I’d had enough of it. I’ve had enough of living in the shadow of the younger sibling. I’ve had enough of being treated like a child again and being spoken down to like one no matter how many times I try to point out that I am 20 now and have lived alone and fended for myself for a year. I am tired of being told off for not unloading the dishwasher, when nobody else has done it either, and I hardly have the energy to breathe or move and am too dizzy to stand, because “We’ve been at work all day and what have you done?! Nothing! You’ve just laid around, look at you!”
I just want my own space back. I got used to living alone, and yes it was lonely but I feel lonely here too. I got used to eating what and when I wanted and doing things when I wanted and being an adult and sorting my own life out and doing my own shopping without having to label everything and police it. I’m tense here. I’m worried things will go back to how they were and I can’t deal with that now. I don’t trust the illusion that things have changed because everything has a funny way of always, always shifting to how it was. People don’t change. I have given up hoping for it. I don’t believe it will ever happen. My mother seems to. I hope, for everybody’s sake, but mostly hers, that she is right.
This morning I was slow to start. It was too hot to sleep last night. My dog was hot so I had the fan mostly on him, which meant that I laid there sweating and sweating and trying to catch the edge of the artificial breeze until the sun came up, by which point I was so exhausted that I don’t remember falling asleep. Regardless, I woke up stupidly early, and cooked myself a bunch of fish and a fishcake for breakfast. I have no idea why. It’s the third morning that I’ve done this. Weird thing to start the day with but it fills me up. Then I felt guilty. I felt guilty that my body felt slightly better than the day before and both parents were out at work while my brother and I laid around. So, after I’d spent almost an hour trying to brush all of the fur out of my chocolate labrador (I got an entire carrier bag out of him and then gave up. This happens every day. He should be bald because I’ve no idea how he still has any fur!) I took the brush and dragged it through the huge, matted, (once) fluffy rug that lives just off of our kitchen. It took me ages. I got more dog hair out of it than I did from the dog and the effort of dragging the brush against the resistance of its matted fluff made me dizzy. I ended up soaked in my own sweat, and then my mum got in from work and laid on the sofa while I hoovered most of downstairs, including the rug.
I felt like I needed to do it, like I owed it to them. When everything started to go black I instantly regretted everything. I downed two pints of water and went upstairs, eventually crawling the last few metres to the shower, which I put on ice cold (no hot water AT ALL) and, after unblocking the drain (which was GROSS) I leant against the wall under the ice cold stream with my heart hammering away so fast I began to become ever so slightly concerned.
Then in walks my mum, while I am showering, to say “(Little brother) and I are going to see Tarzan, do you want to come with us?” I know her word choice meant nothing, but I felt like I was invading a mother-son plan, like I was an afterthought. I went anyway. It was a great film actually, reminded me of when I was three years old and my mum took me and my child minder’s daughter to see the Disney version but had to leave because we got scared and started sobbing right at the start…
Afterwards we walked behind the cinema, a little closer to the river, and went to a restaurant that only serves dessert, because my little brother wanted to go. My mum used to take him very often but it was the first time I had been with them. She posted a picture of him on social media, eating his strawberries and chocolate on a giant freshly cooked waffle.
I just felt out of place. I checked my phone and I had two emails from one of my doctors arranging an appointment in one London hospital next Tuesday, just after I will have spent a little while discussing some surgery that I need in another (both right near my uni in Mile End; within walking distance, in fact. I can’t wait to see Mile End again). This appointment will involve two members of one of my healthcare teams seeing me together. Two medical professionals working
to help against me (because that’s how previous staff have made it feel). I started to freak out at the thought of it.
My mum kept asking why I wasn’t smiling (which made my brother laugh, because he had the most miserable expression ever and she hadn’t noticed). I kept explaining that I was tired, when in actual fact I just felt drained, empty; I knew I’d overdone it both physically and emotionally, but I couldn’t say that to her. Eventually my relaxed facial muscles gave rise to frustration on her part, and we both snapped at each other a little. I didn’t mean to, but apparently I had a tone. Anyway, I felt like a child, and I got a little frustrated but swallowed my frustration.
Then I felt evil. For making my mum frustrated.
I kind of wrapped myself in this empty feeling and went home, where I cooked myself an entire second dinner, complete with a lemonade ice lolly and then celery and humous. And then I realised I had missed my urology appointment. With the new consultant. Great way to make a first impression. I completely forgot. COMPLETELY forgot. I thought it was on the 22nd for some reason, and I had no idea what today’s date was anyway, so there was no chance I was going to make it. Usually all my appointments are in London and so I get text reminders a couple of days before (which helpfully remind me that me missing an appointment costs the NHS £160).
But you know what? Today an incredible little girl who I’ve never spoken to or communicated with directly, made me smile from an entirely different continent across the pond. Her attitude to life even in the face of her health is incredible, and learning that she has recently been able to go in the water for the first time with her ostomy bag and everything made me so happy I couldn’t stop grinning. When I saw an emailed photo of her smiling from a hospital bed, I was at first (and not for the first time) blown away by how incredible she is (and also how alike we look, because I genuinely thought it was me for a couple of seconds). If you saw the smile I was looking at, you would have smiled too. It’s infectious. And you cannot help but smile with her. She’s in hospital again at the moment, and as requested I have sent her some good juju, but I really hope she’s out of there soon, she deserves to enjoy life a LOT. Honestly, I don’t care who you are, you could learn something from this little girl and I’m not just saying that. We all could
So yes, yes there’s no way but through…
But whoever you are, reading this, have some good juju too, just in case you’re in need of some right now and don’t know who or how to ask.
Oh yeah, also, I HIT 100 FOLLOWS ON THIS BLOG TODAY (actually 101, but still…) I know it is a tiny number compared to most blogs, but it means so much to me and you lot are awesome and I’ve no idea why you follow this blog but hey, you made me smile a lot, so thanks!