Tuesday, 18 March 2014

Pissed Off... Actually, Scared.

I'm pissed off.
I'd decided that I wasn't going to write about emotionally-draining, negative things here anymore. That this blog would be a happy space for cupcakes and pie and regaling you all with witty tales of grand overseas adventures, instead of using it as an instrument to help me navigate my way through the quagmire of health and relationship issues like I have done in the past.
Best-laid plans and all that.
So here I am again, boring you senseless with my pathos.
I'm pissed off because I'm using this forum as my outlet, and ruining all the happy cupcakes and puppies and unicorns with rainbows shining out of their arses. I like unicorns. Magical horses that can toast marshmallows. Awesome.
I'm pissed off that I need an outlet to vent this stuff at all.
I'm pissed off that I'm only 31 years old, and I have to think about things like when I might die or what my quality of life might be like in the future, despite the fact that there is nobody in my life that depends on me or who would lose half their heart if I wasn't around anymore (That's a fancy way of saying "if I died", by the way.), or whose life would be seriously affected if I were less able-bodied.
I'm pissed off that I'm going under the knife again so soon. It was supposed to be another five years yet.
I'm pissed off because last time I went under the knife, and my former fiance chose not to be there (huh, well apparently that still bugs me!), I was so sure that the next time I would have someone by my side. True, I had assumed it would be him, but... stuff and things happened. And I mean, my family and friends were wonderful last time, but it's not the same. Not even close. You couply people have no idea how good you have it. Don't ever take having someone you can rely on, and who relies on you in return, for granted.
I'm pissed off that I was finally - FINALLY - getting back on my feet again, and was really enjoying life. I'd been dating like crazy, and although I'm still single, dating has introduced me to some wonderful people.
One guy single-handedly undid most of the damage my ex did to me and helped me believe in my own value and trust men again, just through talking about it (mostly after we stopped dating, by the way - I'm not a total psycho!), so I was actually enjoying dating rather than treating them as job interviews or risk assessments.
A second guy showed me that I wasn't broken as I had feared, and made me realise that I should wait for that person who I click with and who puts a big, goofy grin on my face like he did, and not just settle for "kind of a nice guy" because I'm lonely. Unfortunately he wasn't in the right headspace for a relationship himself, which sucks because I really liked him. He was tall, intelligent and hot. The trifecta - almost as rare as unicorns farting rainbows whilst toasting marshamallows. And yeah, I know the headspace thing could very well just be a line... but it could also be the truth, and it doesn't really matter anyway because he gave me something very valuable - confidence in waiting for something better - and for that I am grateful. My point is, I now feel like I should draw back from dating, because it's not fair to drag strangers into this mess. No matter how tall or intelligent or hot they are.
On top of that, I had found the courage to hike and to run again - alone - after six long years of letting fear rule me, and was watching my fitness improve week by week. I was looking forward to seeing what my body can do. Heck, I ran 2km on the weekend and was on track to run 5km in a fun run, but I assume that's off the cards now.
So now... *sigh*
If you're new here, you probably don't know that I have a heart condition called Long QT Syndrome. It has caused me so little trouble in recent times that it has receded further and further into my consciousness, so that it barely affects my everyday life. I'm not going to rehash it because I've spent so much emotional energy on it in the past, and I don't want to let it get me down, but you can read about it here. If you have several hours, that is, because the posts about it are pretty waffly! Sorry about that. Read or don't read, I don't care, but be warned there are a couple of pictures of surgical incisions and also of X-rays of pacemakers. Grossssss. (Unless you dig that kind of thing!)
So today, I had an appointment with my electrophysiologist (or "EP", as they call them in the business), and they did some tests and discovered that one of my pacemaker leads has a crack in it. It's basically a miniature, plastic-coated, wound gal rope cable (but made of titanium rather than gal), so a few of the filaments have apparently suffered a stress fracture, but not all of them. This causes "static" and means that there's a chance of it tricking the device into believing there's a potentially fatal rhythm happening, and so it will deliver therapy. Which means it could defibrillate me unnecessarily.
So that's pretty crap.
So the EP said that I'd need to get the lead replaced, the sooner the better, probably in the next couple of days.
And that's pretty crap, too. I mean, it's great that the medical facility and technology are available, but it's crap that I need to use it.
The EP also said that they will need to speak to the "lead removal specialist" (because such a thing exists) about whether to remove the lead, or whether to leave it in there and junk up my heart with a second lead. Completely removing the lead can damage the heart, because the end of it has this little spring-like thing that embeds in the heart tissue to stop it from slipping, and that would come out with the lead, but because I'm so young they have to toss up the odds of damaging my heart tissue, or junking up my heart with multiple leads, bearing in mind that I will need several lead changes throughout my life unless the technology changes quite significantly, and soon.
So that's crap as well.
I'm waiting on a phone call to tell me when the surgery will be, and I'm trying to get some work done because I have an audit tomorrow, but my brain has turned to mush and I'm spending most of my energy trying not to freak out or burst into tears.
What I should really be doing is putting my energy into writing a new will. Depressing, but sensible.
I was kidding myself using the phrase "pissed off", though. Let's not lie, I'm scared. I'm really frigging scared.
I'm scared that a second lead will inhibit my heart function, and I won't be able to be as active as I am now, or ever find out what I'm capable of.
I'm scared that removing the first lead will damage my heart, ditto the issues mentioned in the previous sentence.
I'm scared of the scar being worse than before (although I guess that's only a problem if I get my kit off in front of someone, and ain't no signs of that on the horizon!).
I'm scared because last time I was on the operating table I tried to die, and in doing so racked up the 9th defibrillation and 11th resuscitation of my life.
I'm scared that something will happen during the surgery and I'll wake up a vegetable.
I'm scared of being alone during the whole process.
I'm scared of the pain (although the drugs are pretty good...).
I'm scared of becoming addicted to pain killers (it happens easily, and it's almost happened to me before).
I'm scared of how long this stuff takes me to get over psychologically.
I'm scared of being alone after it, forever, because it has literally just hit home that if I'm wigging out this badly over it, and I've had six years to become comfortable with the concept of death or a limited existence, then why on God's green earth would any man of sound mind choose to put himself in a situation where he may have to deal with a partner that could die young or not be able to be their best, awesome self, or maybe never even have the chance to see the best that they can be?? Far out, that's a big one for a stranger to swallow. Although I guess they'd never really know what they were missing...
I'm scared that I won't see Invincible Ness again. She's the one that has a shot at anything, by the way, and believes she can do anything if only she puts her mind to it. I lost her for a long, long time, and she's only been back in the last six months or so. I don't see myself as a cripple like I did when I was first diagnosed - the diagnosis was such a stark contrast from the life Invincible Ness lead - but I'm scared of having to go through that rebuilding process again. It's such a huge blow to your confidence, and it's exhausting fighting crushing fear every single day of your life.
I'm scared of not having a fair chance to live my life. That's not to be mistaken with being scared of death. I don't think I'm scared of death, but I am scared of missing out on all the living there is to do, all the places there are to see and the people there are to meet. I want to get married and have kids, just like everyone else, only now I'm questioning how fair that is on people I probably haven't even met yet.
I'm scared of not being able to do what I love, which is being outdoors, mostly hiking. Sure, what I've been doing is a pitiful excuse for hiking - it's not fear that gets me anymore, or my fitness, but the excrutiating muscle pain and rapid fatigue - but I do it anyway, and it has shown me that I have some very tolerant and patient friends. I hate seeing able-bodied people not using their bodies, just sitting on the couch watching TV. It makes me angry that they are wasting the blessings and opportunities they have been given, and I'm scared of losing courage and not being able to see the silver linings anymore and joining their slothful ranks.
So I'm going to wallow a little while longer, while I wait for the phone call that tells me when I will be sliced and diced and possibly further damaged. And I might (re-)write my will - seems wise. I might also clean my room up in case something happens to me - I wouldn't wish that job on anyone, and nobody wants their family to find their sex toys ;)
In the meantime, I feel like this:
But on the bright side, I like my meals all compartmentalised on a tray, so a trip to hospital won't be all bad. Yeah, I know, I'm a freak. But hey, if there's jelly in a little cup, I'm happy!
And it's better that they found out now, rather than when something bad happened.
Gotta be optimistic about something.


  1. Wait, so are the unicorns toasting marshmallows while farting rainbows? Or are the farted rainbows the ones that are toasting marshmallows? Obviously this was a pathetic attempt at making you laugh.

    You know where to find me if you need to rant/cry/eat all the things/be visited in hospital on a work day by someone who's not your mum. xx

    1. PS. Don't spend your time worrying about your scar. It's nowhere near as bad as you think it is. And if someone isn't willing to love you because of the aesthetics of something that saved your life, then they're an asshat and they don't deserve you and your awesomeness.

    2. Thanks, K. You're right, this is an asshat-free zone! I actually had a guy I've never met say something very encouraging to me about it yesterday. Well, less about the scar and more about the, er, pacemaker situation, but it certainly gave me a new perspective, because hitherto everyone that has said anything encouraging has been a friend and therefore biased. I guess I just need to listen to you guys once in a while xoxo

  2. :-( I will be thinking about you. Too far away to be of much practical use, but do tell me how I can help, if possible! Maybe I could send my sister around in her dinosaur suit to do an encouraging dance :-D

    1. Hey well I'm wearing dinosaur PJs today, so I'd be in good company! I have to say, I'm intrigued as to what an encouraging dance might look like... ;)

  3. I'm pissed off, too, for you. Wish I lived down the street...

  4. bugga bugger... BUGGER!!! my darling Ness... i desperately want to hug you and cry with you, and scream & laugh with you. Wishing and hoping for you - you are indomitable. too far away to come visit... BUGGA BUGGA. love you in buckets xxxxxxxxxxx
    Aunty Maria (the little old lady in Pasadena)

  5. I'm really sorry. It sucks that you have to go all through this. I'll be thinking of you and hoping for the best possible outcome.

  6. Ness, I've just read all of this. It sure is an un-nerving and disappointing situation for you. I remember the way you were at the Calder Fwy project; I'm sure that you can come back with the same great spirit that you had there!!!
    Lester Young.

    1. Thanks Lester :) That's actually really encouraging, because the girl you knew then had no idea this was coming, and thought that anything was possible. I'm aiming to harness that, and more, for the future :)

  7. Well, that sucks, for sure.

    I am sorry to hear you are going through this. Sending positive thoughts your way.


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