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!)


4 thoughts on “Finally Doing The Little Things

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