First Beat

Hello,

Welcome to my blog.  I’ve been deliberating for many months now about starting this blog.  I’ve swung from, it’s good for me to oil my very rusty writing skills, and a new found need to discuss and talk about what it means to be a CHD patient, to a complete fear of ‘just another blog’ from someone who wants attention, a fear of disappearing up my own arse and inspecting my belly button fluff so much that people will switch off and not read.

But after I posted the following Facebook Status on 14th February 2013 I had such a great response and recently having good feedback from an article I have written for ‘The Somerville Foundation’s GUCH News’  (I hope it will be published) I have found the confidence to write again.  So here’s the post that started it all off…..

“This week is CHD Awareness Week, and on Facebook ‘The Somerville Foundation’ asked me “what are you going to do for CHD Awareness Week?” I replied “Talk about it.” So today being the day of the heart and all that here goes…
I have a CHD, CHD stands for Congenital Heart Disease, this wording irritates me greatly, for it implies that I have been careless with my health and ‘caught’ a disease, or shoddy with my life and not taken proper care of myself. I have been neither careless nor shoddy, I was born this way. I prefer the term Congenital Heart Defect, ‘cos that is what it is, a defects(s) of my heart I’ve had since it built itself in my mother’s womb. It’s also hereditary.

 I have had 3 open heart surgeries; the first was when I was little over a year old. This way of life has left me with many deep seated fears and anxieties that are only now beginning to make themselves known. It’s pretty tough. At present, I’ve a leaky heart valve,’ mad muscle’ and arrhythmias. Those of you on here that I went to school with may remember I never did PE – believe me, if I was allowed I’d have been out there like a shot to join you, nothing makes a child question themselves more than being separated and being made to feel different from their peers. This may explain why today was a bad day.

Today I spent an hour and half in an MRI scanner, with radioactive dye shot through my veins, holding my breath every other minute, this makes me feel light headed and sick, I also don’t care much for the confined space of an MRI scanner. I then had to cycle as hard and for as long as I could, with the cycle making it harder and harder, I hate this, this is a test I can’t win at, or achieve at, I will fail. It doesn’t make me feel good about myself at all, knowing that many of my friends today would find this test quite easy. I am now very, very tired and want a little sleep.

But I’m really lucky. I don’t take many meds, I have a good quality of life, I should be grateful that I’m not at death’s door, that I can still dance and act but I have to accept more and more that there are more days now that I can’t get my head off the pillow and I have to let people down or things slip. I read in a book once, and I think this is a pretty accurate summing up of me anyway that some of those with CHD “fear hospitalization, dread owning up to the next bout of atrial flutter, crave sorbet and ice cubes after anaesthetics and demand fierce independence – but unstinting help when we need it.” Yep that’s me init… fiercely independent, but when I’m feeling rough –you’d better be there! ;0)

So right, I’m not one for really chatting about this stuff on Facebook, it’s a first for me, but I think I’ve said enough now, spread the word, done my bit, and anyway, I am only one person out of loads of us that have a CHD, and we’re all individual, we all have our own experiences and personalities. But do you know what is really getting on my goat…..? That I’m 200 odd miles from home and I don’t know if I’ve got any Valentines cards through the door!! Anyway I’m off for a sleep, if you want to know more, check out The Somerville Foundation: http://www.thesf.org.uk/about-us/

So that’s my first blog post!  I did it. Thanks for reading.  Whoop! Go me!  ;0)

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7 thoughts on “First Beat

  1. Our daughter was born with a CHD 4 weeks ago and had her first open heart surgery at 5 days old.

    I hope she is as determined as you as she grows up and doesn’t let it be what defines her.

    xxx

    • Hello,
      From what I have gathered meeting a few other ‘GUCH-es’ we’re a pretty determined bunch.
      I’m sure your daughter will do just fine at being herself.
      Thank you for taking time to read and comment, it means so much.
      Roo

  2. Pingback: Hard Core Heart Cor | Heart Cor

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