hands holding a small red 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!]