The story of my heart

Is that a song title? It might be. Anyway, I still haven’t even started writing my GUCH story, and only 33 (? maths isn’t my strong point)days until the deadline. Actually, that is quite a while, maybe that’s why I haven’t started yet – not enough pressure. I am a bit appalled, though, that I can’t think of anything to write about what has been a major part of and had a major effect on my life. It might be more a case of just not knowing what to pick out (see previous post on this subject). See I am procrastinating instead of getting on with it. Maybe if I wait until 29th July to start I will be more successful?

Or maybe the truth is that I don’t actually know what to say because I don’t know enough about it. I have always felt under informed, if that’s the word, about my own medical history. I think this is because I was quite a small child when all the major things were happening, and I don’t actually remember anything much about those early years. I think I might have subconsciously blocked out memories, because I seem to be able to remember a lot less about my childhood than other people can – or maybe I just know people with good memories! The things I vaguely remember (or think I do) are:

1. Being baptised in hospital, although it is apparently impossible for me to remember this as I was only a few days old at the time.’
2. Eating ice cream with a friend on the ward aged three?
3. My fourth birthday. Just after I left hospital after my operation I think. The nurses gave me a large cuddly mouse wearing a pinafore dress and mob cap, which I still have. She is called ‘wobbly mole’ even though she’s not a mole, but she is quite wobbly.
4. Having a catheter put in and looking at my insides on a monitor.

Another reason I think my subconscious has been at work is my (sometimes quite extreme) reactions to any sort of even vaguely invasive procedure. Going to the dentist can be very embarrassing as I have a tendency to cry. I have found that humming helps, although I worry the dentist then thinks I’m insane. Having a blood test used to be the same, but I am now not so bad if I don’t look at the needle. Having my ears examined at my regular check-ups (I had gromits – no not the dog) was a particularly dreaded activity. The doctor reminded me of Jerry Adams, but this wasn’t why I hated going – I could not stand him poking his little sticks in my ears and I made sure he knew this! I felt sorry for the nurse, but not really for him. I cried, I whimpered, I tried to escape. This would not have been so bad if I had been aged three, but I was about 16-17 at the time. Thankfully I don’t have to go there anymore.

Bizarrely, actually going to my heart check-up is the least stressful medical thing I have to do nowadays – maybe because I’ve done it so often. It takes a while because I have to have several tests – ECG, ultrasound and sometimes x-ray (used to be x-ray every time) and is very boring for the person who comes with me (if anyone does) as it involves a lot of waiting around. I have had to have an MRI scan which I have written about previously [summary, I panicked, got claustrophobic (not necessarily in that order!) and had to be let out. I never want to have one of those again]. I then had a CT scan, which was better even though it involved needles…ok, just one, but that was enough. You can also read about this in a previous post, if you would like to, but it’s probably not very interesting! Before the MRI they attempted an endoscopy, but this was not a success as I reacted like I reacted to the Ear Man, but worse (aged 25).

Needless to say, I feel very silly when I react badly to members of the medical profession who are only trying to help me, but I just can’t help the way I react. (Hence my idea that it’s subconscious reaction to previous experience of medical procedures).

Usually with the check up I know what’s coming, basically at least. More recently though, there has been talk of mending my leaking valve (again – the one I have now is a replacement) and I have a new consultant, as the beloved Rosemary Radley Smith has retired. She gave me some of her blood once! So, I may once again be heading into the unknown. RRS, as she is known (to me, at least), said I should have the valve repaired before I start having children (if I ever do), and although I don’t know if we will, or even can, have children, I would like to have the valve sorted out – it would be one less thing to worry about. Well, I will see what the new person says in August.

I don’t often talk about my heart. For one, as I said earlier, I don’t really know what to say. For two (oops) I don’t want people to think I’m making a fuss and implying they should feel sorry for me. Having said that, I confess there is a part of me that wants people to recognise that I have been through these things, and that I’m not being a wimp when I can’t run to the train station or keep up with people going up hill, and that I’m not being completely unreasonable when I cry at the dentist’s.

[Feel free to disagree!]


Author: Lilian

Librarian who likes music, cataloguing, theology, gardening, crochet, ampersands, taking photos, baking & tea. Has CHD & pacemaker.

3 thoughts on “The story of my heart”

  1. No disagreement here! Maybe it would help to warn the medical people beforehand, then it wouldn’t take them by surprise, and they might have ways to help it be less stressful.I know what you mean about not talking about medical conditions. I similarly don’t talk about my ongoing problems for pretty much the same reasons. It’s probably a British thing, as well. We don’t talk about it for years, then we reach an age where we’ll tell anyone about every single one of our ailments in excruciating detail!

  2. Yes, maybe I should warn them beforehand, that would be sensible. I do now warn people who are going to try to inject me, but they are usually used to people being scared anyway, so are more prepared! It’s funny how people seem to lose their inhibitions regarding telling people about their medical conditions when they get older. Maybe it’s because older people are not worried that people will think they are making a fuss – they may even welcome the attention because they get less of it generally. I think once you get to a certain age you probably get past caring what people think, and just try to make sure you get the care/attention you want. Or maybe I am just over-analysing and it’s just a strange human (or maybe, as you say, British) trait!If you ever do want to talk about things I won’t think you’re making a fuss, but I understand if you prefer not to.

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