Saturday, March 30, 2013

clear (imperative/adjective)

Hmmm.  Where to begin?  I always feel uncomfortable blogging about my health and other depressing subjects.  I'm mindful that it probably makes YOU feel uncomfortable and I don't want to do that.  I also don't want certain real-life people knowing everything about me and I know certain real-life people do lurk around here.  But there is some stuff that I want to get out in the open.  If you don't want to read about it, leave now and check back in a few days when I'll have got this off my chest (pardon the unintentional pun) and will be blogging about something else.  I bought some nice vintage buttons the other day.  You can come back some other day and  read about them instead.

I've been getting pretty frustrated recently at people knowing my business.  I thought I could be open about things with some people, the ones I chose to tell, but still keep things private on the whole.  Maybe it's my own fault for not telling my confidantes more explicitly that they were in the special inner circle and shouldn't share my situation with others willy nilly, but suddenly it seems like it's out of my control and certain people are knowing things that I don't want them to know.  A certain someone (who shall remain nameless) shared my "news" with some random guy that Graham went to school with when they met in the supermarket and justified this, when challenged by Graham, by saying that I had probably shared it all on my blog anyway.  I hadn't.  I'm not sure why anyone would presume that I had.  I found this out mid-discussion with Graham about who he could and couldn't tell when he went out with some friends tonight.  He said too many people already knew for it to be kept private.  I said I wished I'd never told anybody.  I do wish this.

This makes me wary of putting it out there so publicly.  Once people know things, you can't take it back and I really do regret telling anyone who did not need to know.  I have wanted to blog about things more, but didn't want to be left wishing I could take it back.  I also didn't want to feel embarrassed by a so-called self-indulgent post.  I know other bloggers hate them.  But this is MY blog.  Even if I'm only posting something lovely I've seen on etsy or what I bought in a charity shop, it's all about me really.  So why shouldn't I share the things that are actually central to my life and existence?  Anyway, once I had calmed down and stopped wailing about how Graham and all his acquaintances could continue gossiping about my failings once I was dead and they were all still alive (yes, I really do say such terrible things when I am in that dark place) I realised Graham was right, that the news had already gone too far for it to be a secret.  I don't exactly know how to explain this, but I felt I would be happier telling everyone on my own terms than having some people knowing bits and pieces and thinking they had some sort of...  power over me?  That's not really what I mean.  I'd just rather assume some control over the situation again and the only way I can think of to do that is to be more open about it on my blog.  I promise not to harp on about it after this post (where I suspect I will harp on A LOT) but it would be nice to be able to write freely, mentioning it now and again and not feeling like I had to hide stuff.

God, what a build-up.  Brace yourself for the anticlimax of the century...  I am now a cyborg.  Sorry, just trying to make it sound more suitably dramatic!  The more boring truth of the matter is that I have had a device implanted in my chest in the hope that it will make my heart start doing what it's supposed to and stop me dropping down dead as I go about my daily business.  The way this device does this is a) by using a type of pacemaker to resynchronise the two sides of my heart, which have been beating out of time with each other since my heart got so stretched/enlarged, and b) by having an in-built defibrillator (like those scary paddles on Casualty - CLEAR!) that is on constant standby, ready to administer an electric shock to my heart should it start misbehaving and try to kill me.

This is great in so many ways.  When I saw my cardiologist after the MRI I had in November, I really thought they'd be telling me it was time for a heart transplant.  This situation I find myself in now is obviously MUCH less scary/serious than that.  Also great, my device is proper state of the art.  It costs nigh on £30,000 and will have to be replaced every five years or so.  And the NHS gives me this for nothing and doesn't even ask me to prove that I am the sort of person who deserves all this money being spent on keeping me alive.  I mean, do I really contribute enough to society to deserve this?  The NHS doesn't even question this and I love (love, love, love) them for it.  Thank god I live in a country where I can get the treatment I need and not have to worry about whether I can afford it.  So this is all great.  Also great is the fact that I have an understanding employer who has let me take all this time off to recover without so much as a raised eyebrow.  And, of course, the fact that my family have been there to help in practical and necessary ways.  

So I know there are a lot of positives and that I am lucky in many regards.  But I think it's also fair to say that my situation sucks and that there is a lot of negative stuff that is really hard to get used to and to get my head around.  Some of the negative things are so awful that I can't share them here, some are so awful that I can't share them with anyone.  Other negatives might seem superficial or irrational, but they do bother me and I don't think it's wrong for me to be bothered by them.  It's mostly these superficial negatives that make me angry that people only vaguely connected to me think that they know (or have a right to know) what is going on, let alone think that they have the right to share this information as if it is their own.  

Firstly, I hate the term "pacemaker".  Everyone knows someone who's had a pacemaker.  Usually it's some elderly relative who's had one fitted in their seventies or beyond.  This drives me crazy as it makes people think this whole procedure is no big deal.  I can tell you that having heart failure as a woman in your early thirties is a big deal.  It's also a big deal that the medication (my great hope) hasn't worked, hence why we need to try this.  It's a big deal to know that the pacemaker might not work either (there's a 30% chance of that) and that, even if it does "work", it won't actually cure me, just hopefully stop me dying quite so young.  So, no, I don't care if your friend's great-granny has a pacemaker and can still make it to the local corner shop on a good day.  That sort of information does not make me feel better about myself or my situation.  Also, whoever gave my contact details to Chest, Heart & Stroke Scotland can consider themselves blacklisted.  Receiving quarterly leaflets with pictures of geriatrics exercising from the comfort of their armchairs in the old folks' home does nothing to lift my spirits.

At least the internal defibrillator has a touch of glamorous danger about it, I suppose, but it's this danger element that makes it so hard to get used to.  When I've blogged about going to the cinema recently, it hasn't just been in order to take my mind off things or to pass the time while my insignificant external wounds heal.  It's actually really scary to be on your own, knowing your own body (or something within your body but outwith your control) could deliver an electrical charge straight to your heart, potentially rendering you unconscious or even killing you.  The cinema seemed like one of the most isolated/private public places I could be and it was a psychological trial, a fear to be overcome, for me to go.  I texted a friend from the cinema yesterday to tell her my dead body could be found in screen five should I fail to make it out alive.  I was only half joking.  A big part of the reason behind why I've delayed my return to work is because I'm scared of being shocked in that environment where I might not even be discovered for hours on end and where nearly no-one knows about my new cyborg status.  A medical professional recently pointed out that I should have been more scared without the device.  If I do receive a shock (and maybe I never will) it will be in a situation where I would have dropped down dead otherwise.  I'm safer out on my own now than I was before.  I know this is true and it does make me feel slightly better to think along those lines, but I think it will be some time before my mind lets me really believe it.  How long do I have to go without being shocked for me to stop waiting for it to happen?  Incidentally, even if the shock doesn't render me unconscious, it will still feel like being kicked in the chest by a horse, something I have no desire to go through, or should I say, something I have no desire to go through AGAIN.  The defibrillator has to be tested during its implantation.  They use the pacemaker to put your heart into a dangerous rhythm and sit back and wait (with Casualty-style paddles on hand) to see if the defibrillator will successfully deliver a shock and get your heart working again.  And you are awake while they do this.  My memory has, annoyingly, blanked this experience out, but I am told that I screamed a lot.  I don't want to scream like that in public, especially not in front of colleagues or friends-of-friends etc.

I don't like this situation feeling like it's out of my control or that it is a major part of who I am.  I've been advised to wear medical alert jewellery, something I am loathe to do.  I have to carry a card (and I mean an A4-sized card, not a credit-type card!) everywhere I go with details of my device's settings.  According to the charity for Scots with implanted defibrillators (I forget their name as I'm not ready to associate myself with them) I should no longer ride a bike or climb ladders, neither should I holiday anywhere other than a major city with a dedicated cardiology hospital.  There are implications for driving too.  I have to keep my distance from mobile phones, hair dryers, sewing machines, airport scanners and shops' security gates.  I negatively judge those who belong to societies/forums for people with implantable cardiac devices.  I'm sorry, but I don't want to be one of you.  I am one of you.  I hate it.  I have a scar and a lump on my chest and am young/vain enough to care a little bit about that.  I have a constant physical reminder that my heart is scarily buggered.  Dulcie has a mum who gives her a metal clank on the head every time she tries to cuddle her.  None of this is who I want to be or how I want to live, so why would I want every vague aquaintance to see me in that way?

Despite the fact that all of this IS out of my control, I feel like a failure.  I feel like people judge me for this.  I am embarrassed that I couldn't make it to the end of a pregnancy, something that other people do with ease.  I feel like I let Dulcie down before she was even born, made her start her life at a disadvantage.  I feel like everyone knows I did this.  I feel like I am not doing the great job I wanted to.  I feel like a failure.  If you have a baby, I probably hate you.  If you have more than one baby, I almost definitely hate you.  I wish this wasn't the case (it would certainly make attending toddler groups a lot easier!) and that I could take this on the chin, look on the bright side, be more generous.  I feel like a failure because I can't do this yet.  If I am walking with someone, I will try to engineer the conversation so that they do the talking when we are going uphill or up stairs.  I don't want people to notice I might be out of breath because this makes me feel like a failure too.  I find it hard to imagine a future where I am not scared and unhappy, or a future where I can forget about my heart or be able to do the things I really want to do.  This makes me feel like a failure and like I might always be a failure.  I hate the thought of the people I love worrying about me.  I hate feeling like I am responsible for making them sad.  I try to hide how I feel.  Sometimes this means I can't think of anything to say for days on end.  I feel like I have nothing good to offer my friends and family at the moment, I feel like I have let them down, that I am a negative addition to their lives.  This makes me feel like a failure.  Sometimes I feel the same about blogging and feel like a blog failure too.  I notice certain people in the real world (not the important people, thank goodness) slightly enjoying my situation.  I see them storing up information about me and looking forward to sharing it with others.  These are the people I wanted to keep from finding out.  Them knowing but not really caring makes feeling like a failure seem even more lonely, sad and real.

Actually, I know (when I'm in a more rational mood) that I'm not really a failure.  In fact, sometimes I even know that I have mostly done really well in a very difficult situation.  But that is just it - this IS a difficult situation.  It's also MY situation to share/hide however I see fit.  I don't want people to know about my weaknesses, so of course I don't want all and sundry to hear the word "pacemaker" third hand and think they know what I'm going through, lumping me in with every other OAP in the western world.  But if I choose to tell all to whatever random person happens to stumble across my blog, that is up to me.  I'd just rather I got the opportunity to tell you in a bit more detail, even if that does make me come across as a self-indulgent wank for a time.

So now we all know - I have a pacemaker and an internal defibrillator and, because I am a conscious being with thoughts, hopes and feelings, I am finding it a little tricky to come to terms with this.  I think most people would.  I think I am doing OK.

Gosh, I got quite depressed somewhere in the middle of that, but actually I feel much better now.  I hope you'll forgive my self-pitying/bitterness/negativity just this once.  Hopefully getting it all out in an overlong oner means it won't have to rear its ugly head here again for quite some time.  I think now I can stop worrying about who knows what and what they make of it.  I'll just presume we all know I'm a cyborg now and wear my scar/thoughts out on show whenever I feel like it.


  1. Warm thoughts from one of the people you hate - thank you for sharing.

    1. Thanks, Hilde. And of course I didn't mean you! :)

  2. There is nothing I can say other than it's your blog, write what you like.

    And you're definitely not 'a self-indulgent wank'!

    And I saw once, I believe on the Great Book of Face that the people that matter don't mind and the people that mind don't matter.

    That was more than nothing, sorry xxx

    1. Thanks :) I feel much better today and had a small epiphany blog-wise today that I plan to use to explain my position to those who think me blogging gives them the right to gossip. I may post stuff where everybody COULD see it, but not everybody DOES see it. I will bear this in mind next time I go through something I'd prefer to keep on the lowdown. It's nice to have a soundbite at the ready!


Hello! I'm sorry that I've had to turn on the word verification feature again, but my inbox was being flooded with very dull spam. Genuine comments always brighten my day though, so thank you for taking the time to leave one :)