You say ‘mind blowing’, I say ‘weird’

I went went for my pacing check last Monday. All was well. In fact, my heart is actually working better than it was before. For some reason (unknown), the node that wasn’t working, which meant that the lower ventricle of my heart was being paced all the time as I had complete heart block, is now working quite well. The technician has now changed the algorithm so that my heart will work on its own as much as possible, but the pacemaker will still stop my heart rate less than 60 bpm. The technician this change in the node’s behaviour was “mind blowing”. I said it was weird. But, either way, it is good.

Image: Atlas Pacemaker by Travis Godspeed via Flickr

Somerville Foundation Conference 2016

Mr C and I went to the Somerville Foundation‘s annual conference on Saturday. As I may have said before, Mr C refers to this event as me being with my own kind, which is true. The powers that be are thinking of stopping the conference, which would be such a shame. I can see where they’re coming from – the Foundation’s funds are diminishing rapidly and I expect the conference is one of their biggest outgoings – but for us, the people with CHDs, not having the conference anymore would be a big loss.

It’s not just the fact that it’s an informative and interesting event, but it really comes back to Mr C’s joke about being with my kind. Yes, we are with ‘our kind’: people who have been tested, prodded, invaded, cut open, had our rib cages sawn in half, been injected, sedated, medicated, treated, mended (for now). Someone once told me that having open heart surgery has a similar effect on the body to a bad car accident – and here we all are,  in this room in a fancy hotel in Leicester, walking around, laughing, eating, thinking, discovering. Living. I think we need this, we need to be together and to not feel like the minority, the different ones, for a change. I think we deserve this company of our fellow survivors and the opportunity to share our stories and be properly understood.

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A badly lit picture of lots of people with congenital heart defects (and Mr C) having lunch

Anyhow, as usual, it was lovely to see everyone (well, nearly everyone, some people couldn’t be at the conference this year, which was a shame. (Hi Jo!)). I think my favourite talk was the one about developments in non (well, less)-invasive surgery – carrying out surgery using cardiac catheterisation  We’d heard about it at conferences before, but this was the first time we actually got to see and handle some of the devices that are used. I took some pictures:

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A cow’s heart valve. This folds down and is passed via catheter into the heart to replace a damaged valve. I have a replacement valve but mine is a pig’s valve.
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This device folds down (a bit like an umbrella, but much more intricately), and is passed into the heart via a catheter. Once it’s in place it is opened out and used to ‘plug’ a septal defect (where there’s a hole between two of the heart’s chambers – ‘hole in the heart’) – one of the defects I was born with.

I also appreciated the talk from Anne Crump (the SF’s Mental Heath Support Worker) about dealing with anxiety relating to having a heart condition. Again, we’ve heard Anne talk about this before, and I was expecting it to be a bit samey, but actually, I realised I needed to be reminded that it’s OK to be anxious about stuff. In a way, it would be more odd if we weren’t sometimes worried about our heart conditions! Recently, there has been more research about the psychological effects of growing up with congenital heart disease, even post-traumatic stress disorder, which seems quite extreme, but actually isn’t that unlikely, given what some people who’ve had multiple surgeries and other invasive medical procedures have been through. Sometimes I think we just need to give ourselves a break!

Another highlight was Kate’s talk about her bike ride from one end of Ireland to the other. An amazing example of hard work, determination and perseverance; Kate was raising money for the Somerville Foundation. Her blog is well worth a read.

If there isn’t a conference next year I hope we can all find another way to meet, but I’m not sure that this is very likely, given logistics and people’s commitments etc. I think sometimes it take an organised event to get people together, and I’m not sure we can rely on people to take it upon themselves to set up meetings,  but perhaps I’m just being pessimistic! Anyway, we shall see.

 

Crochet catch-up

I’ve made a few crochet items over the past few months, with varying degrees of success…

First #crochet I've done for months! Mini cowl.

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I made this one in June. The pattern is Catesby Three-Hour Cowl, by Kathryn Jones. It turned out quite small, I think because I didn’t have quite enough yarn. I will save it for B for when she’s older.

#hat #crochet Too small for me so modelled by husband.

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This one was also made in June, and was also too small, or at least too small for me, but I have a big head. It fits Mr C OK (as modelled). This pattern was The Hadley Slouch on Olive and Brook.

I did the Hadley Slouch again, using a fatter hook and adding more rows (I think) and ended up making a hat that fits me, but looks a bit like a Smurf hat:

Inadvertent Smurf #hat #crochet

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Chunky #crochet #cowl

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When it was really hot I made this chunky rubbed cowl by Lorene Haythorn (above). Not really the right project for summer but never mind!

Chunky palm leaf #crochet cowl. Modelled by #husband.

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Just before that, I made this cowl using a palm leaf stitch pattern. It’s based on a version of Kaitlyn, by Cheryl Chow.

My latest finished object is this baby’s pixie hat, modelled by Monkey:

Monkey models my latest #crochet effort. Pattern is Granny Pixie Hat by Kat Goldin.

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It’s a bit oddly shaped, but hopefully it will look better on my friend’s baby than it does on Monkey!  I’m currently working on some booties for the same baby in case she (or her parents) don’t like the hat!

Daddy’s girl

B is definitely a daddy’s girl. She almost always chooses to be with him, chooses him to do things for her, even to the point of wanting him to pass her things instead of me doing that for her even if I’m nearest to the thing in question! She wants him to pick her up, change her nappy, put her in the pushchair, put her to bed, get her up and ready for nursery – basically everything that can be done she wants Daddy to do it.

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Poor Daddy is very tired, but he is not always very good at accepting help either. I think this is partly because he worries about my health problems, especially my heart condition, and I suspect he is also slightly haunted by our experience of postnatal depression. It doesn’t help that I do get tired and I stay in bed late on the days when I don’t work, because I can. But then of course I feel guilty about this. Not just the extra sleeping, but but the general lack of me doing things with B. Please don’t think I’m not grateful for everything Mr C does, it’s just the guilt, and also my own ego, worrying about what other people are thinking of me (that I’m a bad mummy, obviously).

But then I think, would people be thinking this about Mr C if the situation was reversed? If I was the one doing (almost) everything for B and Mr C was the one doing all the housework, washing, cooking, gardening, tidying, organising the house, liaising with decorators, etc., I don’t think anyone would bat an eye lid, and might even think Mr C is an extra helpful husband (which of course he is) so why do I feel bad and think people are judging me? I must be more sexist than I realised! Alternatively (or also) it just shows how deeply ingrained the idea that the mother should be the primary caregiver is.

It’s good for B to spend lots of time with her daddy and it does give me a break, which I will admit I do need. Having Tuesdays off everything has made a big difference to my tiredness levels – well, its either that or I’ve just got used to my medication. I’ve got my annual heart review next month so it will be interesting to see how it’s behaving now – I’ll let you know!

 

 

Harry Potter and the Cursed Child: a haiku review

Time turns for PotterIMG_20160827_170558

Best left well alone I think

Why did Jo do it?

 

I heart food

I have to be honest and say that I’m finding watching what I eat quite misery-inducing. I love food in most of its forms. I particularly love lots of foods I shouldn’t eat anymore, e.g.: pizza,  pasta, noodles, (most) Chinese food, biscuits, crisps, chips, potatoes, most chocolate, cakes, doughnuts, and gnocchi. So to cheer myself up, I decided to make a word graphic of many of the things I like to eat and can still eat lots of (within reason, obviously)…