Finally Doing The Little Things

Recently I realised that this whole ‘trying to care about myself as much as I care about everyone else on the entire planet’ thing, is going to involve facing up to a lot of things that I’ve been unable to do so on my own before (life was much easier when there were uni parents to drag me through the tough times and extinguish the flames of my get these IVs out of me I’m running away freak outs). A couple of days ago, I decided it was time to stop running. Usually I turn into one of two birds: an ostrich (I bury my head in the sand and hope the unpleasantness goes away) or a roadrunner (I freak out and run, literally or just inside of my head, avoiding the unpleasantness at all costs, sort of distancing myself so far from everyone and everything in the process that nobody can catch me to pull me back to reality – or persuade me to return to the hospital, which only my university parents and a couple of doctors have ever actually succeeded in doing). Usually, giving up on either of these ways of dealing with a situation (or not dealing with it at all) would be a negative moment, a sign that I’m giving in and shutting down emotionally. But this time, this is a sensible decision powered by rational thought and a newfound, necessary level of maturity.

Time to stop reaching out for hands to hold and finding only the paws of my dog; time to stop asking for help from people who let me down over and over again and let me fall to the places they once saved me from. I finally did what had to be done to move forward and remain whole – I gave up on all of them, but in a positive way. I cut (not literally don’t panic) off all the rotten, toxic people that at one point helped (but were, I realised, now hindering and breaking) me (which is hard to maintain, because I really want people to be there; the support I tried to force my brain to stop pining after was at one point the only thing that kept me alive, and I’ve been struggling without it).

If I am doing this alone, I am doing this properly. I am doing all of the things I should have been doing. 

This started with buying a small runner’s belt (basically a runner’s version of a bum bag or, as the Americans call it, a fanny pack) to wear slung over my shoulder and neck. In it I now keep my daily pillbox (which I also only just got, and am finding ridiculously useful because I take quite a lot of tablets) injections, needles, a few strips of other tablets, my continuous glucose monitor, medical alert card etc… (basically all the medications and things that I need multiple times a day/ most frequently use and usually carry with me scattered about my person or lost at the bottom of my backpack – the amount of times I’ve stabbed myself on a stray used needle is RIDICULOUS). All through primary school I had a considerably more obvious version of the same thing which contained all my medication, but I got embarrassed, and an incident of being bullied about my health problems in sixth form (two people spread some insensitive, hurtful comments around an entire school bus, and therefore multiple year groups, which winded me when I first found out and left me extremely suicidal for months and months – it isn’t my health problems that bother me, it is how people treat me because of them/ react to them. My worst fears came true) made me determined to hide everything from people at all costs forever.

As the machine that reads the data from my continuous glucose monitor fell out of my pocket for about the hundredth time the other day, closely followed by about six tablets that I had also been storing there while I went to get another glass of water, I decided that it was time to swallow my shallow pride and start carrying everything in a place it couldn’t fall out of again. This also means I won’t go out and then realise I’ve left my heart medication or insulin (or something equally important) on the kitchen side or somewhere a lot less obvious (there is an awful lot to remember, and before the stuff that I most frequently use was all crammed into 1 place, I’d remember maybe 80% of it, 80% of the time, and have to frantically go back to get it). No more leaving a trail of medical junk behind me! Obviously, there isn’t room for all of it in the teeny tiny bag, but the most important stuff is now always at hand, so I don’t have to worry about finding it everywhere.

I’m also supposed to have been carrying a small heart machine thing around with me the entire time in case my heart decides to be a poop. I did this for my first couple of months of university… Then I got irritated at having it around, decided my heart was fine (hahahahaha see how I just turn into an ostrich ALL THE TIME?) and that therefore the machine was not required and the thing in my chest was sufficient, and just let it sit on my desk at university for months. When I went back to university yesterday, I grabbed the little machine thing (and the purple camera pouch I bought to disguise it) off of my desk, and clipped it onto the strap of my ‘runners belt’ where it now conveniently hangs by my side. Responsibility right there!

I also had the whole “Have we given you one of the bigger heart monitors that plugs into the wall?” conversation with the nurse from the pacing clinic yesterday. Basically, if I can be bothered to plug the thing in and turn it on, it sits on the side and sends them a (live?) feed of my ECG and stuff. Pretty helpful, except I think I’ve used the thing once, because it was a far too obviously abnormal feature in my room (at university I have an entire fridge just full of my medications, so thankfully they are very well hidden), and I didn’t want people to once again label me a freak (so I hid my heart monitor, turned off, under a bunch of cushions in my university room and didn’t touch it until yesterday, when I also brought it back to Kent with me).

Then, cringing at myself because somehow those bullies’ words still sting, still make me deeply, intensely ashamed by my health and who I am – I found my medicalert bracelet (a black, purple and white strap that has a metal tag over the top of it listing my health junk on two sides) which is several years old and out of date with regard to the developments in my heart stuff, and tells the world that I still have a (now non-existent) PortaCath. But anyway, I put it on. And then I looked in the mirror. And saw the reality I had been hiding from.

Processed with MOLDIV
Returning to my primary school self. There were times when I walked public places (including, one time, my secondary school – never. Again) tied to an IV machine (named Bob) that gave me medication via a PICC line, and in hospital I usually end up dragging around several IV pumps, but I lost so many people from my life through these times that until now, unless unavoidable, all my medical stuff stays hidden from EVERYONE  – if nobody can see it, it doesn’t exist.

Only this time, I didn’t run from it. I forced myself to keep looking until I persuaded myself that there was no shame, that this would be good for me, more convenient, that it was the right thing and that anyone who made me feel guilty and ashamed and like the scum of the earth because of that again could go screw themselves.

I don’t know why. I don’t know why now. I also don’t know how I still haven’t felt extremely low or fallen apart over this recent heart confusion and impending heart unpleasantness. I don’t know where this sudden ability to just… Deal with it all so effortlessly, has come from. I don’t know when, why or how I stopped fighting reality and accepted that yes, this is it, and yes, ‘it’ is ok.

Since the end of last year and some scary health hiccups, I’ve been seeing a clinical psychologist who specifically sees people with one of my health issues, and therefore specifically deals with the emotions and difficulties this throws up. Helpfully, she’s based in a hospital literally behind the carpark at my university, so close to my halls of residence that I can see my kitchen from the window of her room. Ok, the first part is a lie. I haven’t been seeing her since the end of last year. I stopped going to my appointments. I can’t open up to people who I don’t know at all, I can’t tell them really personal information with no idea about who they are at all. To date, the only person I’ve been able to be honest with about my feelings towards everything with, was uni dad, and when I could figure out all my feelings by filtering them through his rational, scientific brain, without being judged, it gave me the confidence to tell her a little more (but that ship has sailed, sunk, and rotted away, or I at least feel entirely ditched from time to time, and have as a result, included uni dad in all the stuff I’ve cut myself free from emotionally. If I ever feel the need to voluntarily run off with the grim reaper, this is going to be very problematic, as his refusal to allow himself to be cut loose was, as he knows, the reason I often couldn’t go through with stupid stuff – I had to cut all the ties and I felt too guilty to leave the planet voluntarily while it was evident someone still cared).

When things got really, really desperate and I didn’t know how to cope with it all any more, I would try to talk to her, but I just left her room feeling frustrated, lost, misunderstood, and a whole new level of hopeless. Sometimes uni dad (unfairly to him) picked up the pieces. Sometimes my friends did. More recently, when I gave up on un parents for their own good (and because one of them hasn’t spoken to me since March),   I just bought cider on my way home and went straight to bed too drunk to feel. I felt so unsupported at university, and eventually I decided that having conversations that triggered many flashbacks to hospitals, and discussing the time my newest consultant’s team left me to die (basically having the same conversations over and over) was doing more harm than good and making me feel even more unsupported everywhere else. So I stopped going. I stopped seeing my community nurse too. Because they didn’t get it and their consultant didn’t care. And I felt like I was bothering them, I saw the frustration on their faces and heard it in their voices. I wasn’t me, I was scared and vulnerable and desperate, and I don’t think they saw that.

Now, because of the efforts I have made and thought processes I’ve logically run through over the past few days, I feel less dependent on anyone. Not because I am strong enough to deal with this by myself, but because there is currently no other way to be other than alone in this. It is the only way to get through. I have appointments coming up with a couple of consultants that are going to kick off my PTSD big time (it never stops, but the flashbacks become far less frequent and the nightmares settle a little). The things we talk about won’t be pleasant. One of them gave up on me a few months ago, knowing I was going to end up in life threatening situations and ICU if he did nothing, knowing I almost didn’t survive it the time before I saw him, but unwilling to try anything new. Luckily, a new (much more helpful) consultant in Kent was recently so appalled at the state I ended up in that he’s stepped in with his team and I’m now dealing with two (or three or four) teams and specialist nurses for the same health hiccup (mostly in London, one in Kent). But I’m dreading going back to the guy whose decisions (directly or indirectly) ended up with me being in ICU, and multiple life threatening medical emergencies which very nearly wiped me out. Especially as there may even be a new surgery that would help.

Anyway, my point is that now I’m less dependent on the ‘ill people psychologist’ to save my ass and stop me wanting to call upon the grim reaper and run away to oblivion with him; it isn’t going to feel like the end of the world if she’s no help at all. There is nothing to lose, no damage she can do. I’ve got this. I am in control. She might help to guide me in my own process of getting back to the person I was. But it is now my process and, I feel, mine alone (ok potentially my London cardiologist too because he treats me like a human that he cares about) I can’t find it within myself to fear this health situation any more. I have no more worry left to give it. And so there is none. I am calm, and that is allowing the dust to settle around me enough for me to start finding, restoring, and replacing the broken, shattered pieces of myself that the chronic lack of support, my resulting inability to cope, and my health… have stolen from me.

So I finally responded to one of the psychologist’s emails. Because the fear isn’t thinking for me any more, and at that moment I was succeeding in not trying to view myself from anybody’s mind but my own. Twenty year old me was an idiot – but I now realise it was only because she was lost in a vortex of fear and hopelessness and desperation because the man with the power to stop the big scary thing taking (or at least frequently almost taking) her life couldn’t be bothered to try for her, and the people she relied upon for support in place of those who were meant to offer it one by one left her when she needed them the most. Twenty year old me is wiser now (after all “wisdom is nothing more than healed pain”). She is doing what, most of the time, nobody else is willing to – she’s not giving up on herself. She’s facing the things that everyone else got to run from, and she doesn’t blame them for saving themselves from her health. Today when a doctor rang asking her to go and have bloods taken, she recognised the number and didn’t just hang up the phone.

All of the above is just another anglerfish I found at the bottom of this dark scary trench. But positive things will follow. I don’t know how, but I’m getting there. I’m starting small, but the payout will be huge.

(wow this is too long to go back and read through, if there are mistakes, I’m sorry. Also sorry for whatever this was!)

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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)