Prediabetes? No, I’d never heard of it either…

However, it turns out I have this condition, otherwise known as impaired glucose tolerance (IGT).  I’m going to have to eat a more restricted diet (although it’s really just a healthy diet) – a big reduction in sweet things, healthier versions of carbohydrates and more fruit and (especially) veg. Having said that, it’s not like I eat a wildly unhealthy diet at the moment, so I’m a bit cheesed off about having IGT – I’m not overweight and I eat lots of vegetables…so either I’m eating too many ‘bad’ carbs (we do eat a lot of rice and pasta) and/or the IGT is a result of (or related to) me having had gestational diabetes. I can’t help feeling that having IGT is my fault for enjoying food too much. Sigh. Still, at least now I know I have it I can try and do something about it and (hopefully) avoid developing type 2 diabetes.

No more pizza for me!😦

Sausage pizza by Amy on Flickr

Appearance matters

This post talks about scars, invasive medical procedures and needles, so please don’t read on if you think this might upset you.

The Scarred FOR Life photos were recently exhibited at the 7th Appearance Matters Conference held in London.  I thought about gate-crashing the conference to go and see them (apparently this would have been OK), but I didn’t have the nerve in the end.

I haven’t felt particularly self-conscious about the appearance of my scars since I left school (20 years ago, yes I am now ancient in the eyes of anyone under 25), apart from when, as occasionally happens randomly in shops and such like, someone I don’t even know says ‘what happened there?’ (or something), pointing to my heart surgery scar. This scar is actually not the ‘worst’ one I have (in the sense of being the most obvious), but it is the only bit of my scars I normally have on show, as it were. The chest drain one is quite good, as is the one from the bypass machine from my last open heart surgery in 2008 – this one gives me the most trouble as it can ache when it’s cold and/or I’ve been climbing hills/stairs, even though, bizarrely, I can’t actually feel anything on the skin where it is. I think it must be quite deep into the muscle – hence the aching. I have deeper ones (the temporary pacemaker lead – I can still (mentally) feel how painful it was when the nurse tried to pull them out ((unsuccessfully), fortunately the doctor had more luck). Or is that a different scar? I actually don’t know. The deep one might be something else. I have a few scars that I’ve never identified with any particular procedure, they’ve just always been part my physical make-up. There are lots of small ones, from cannulas and other needles. Blood tests, lots of blood tests.

[Aside: I just read this on the Great Ormond Street Hospital page about cannulas and it’s amazing:

If you are scared of needles, let your nurse or doctor know so that they arrange to have a play specialist to support you. It should take only a few minutes to put an IV cannula in.

A play specialist to help with fear of needles. I wish they’d existed when I was a child/teenager…maybe I could ask for one now? Probably not, sadly. I think Great Ormond Street’s information about cannulas should be given to anyone, young or old, who has to have one. If you’re an adult, they don’t explain to you, then just put one in you as a matter of course and you have to get on with it. I always tell them not to put one in my hand (that’s the most painful place for me) but sometimes they have to. I hate having one in because (a) I’m really paranoid about knocking it because it hurts if I do and you can’t wash properly and things and (b) for me, the cannula is major psychological symbol of being [ill and]in hospital. Once it’s in, you can’t go home until someone else takes it out so you’re basically trapped. I guess I could take it out myself if I was desperate, but, ugh, no. The first thing I do when they say I can go home is ask someone to take out the cannula(s) (yes, sometimes you get two as a special treat). /Aside]

In terms of appearance, though, I’ve always been more self-conscious about the effects of my scoliosis – I suppose because I can’t hide it. I used to wear baggy clothes and have my hair long(er), which I hoped might help, but I don’t think it did really. It looks horrible and I’m still really self-conscious about it – ageing and entering adult society doesn’t seem to have helped with this. I look at other people with envy all the time, wishing my back and shoulders were straight and I could wear the clothes I want to wear (it’s hard to find things (particularly dresses) that fit well over weird, very round shoulders (which are also at different heights) and a half-hunchback (caused by the curve in the spine making one shoulder-blade stick out more than the other). I was never offered treatment, apart from exercises (which of course I didn’t do properly – I was a teenager!), because my scoliosis wasn’t considered severe enough to warrant it. And would I have wanted to go through wearing a back brace and/or having surgery? Probably not.

People at school used to say I was ugly (I also have wonky teeth, to add to the effect) and I remember someone throwing stones at me as I walked home from school one day (why? I can only put it down to the way I looked). Humans don’t like ugliness because it reminds them of death and decay – that’s a biological fact (that I just made up) – but in a so-called civilised society we’re supposed to keep our thoughts about it to ourselves…except that we don’t. Whether it comes from bullies at school or the media’s ‘ideals’ of what people (particularly women) are supposed to look like, ‘ugly’ people (people who are far from what society considers normal in appearance) are made to feel bad about themselves on a fairly regular basis, or just don’t appear in mainstream media at all. Unattractive=bad. Villains are scarred (or hunchbacked, see Richard III for a classic case in point), ugly frogs turn into beautiful princes or princesses – remaining plain and being yourself is not allowed (except in Shrek).

Everyone needs to know or at least feel that they are a good, worthwhile, capable person. If someone is not conventionally attractive on the outside they particularly need to know this – they need to be told this by the people who love them, especially when they’re young, because other people and the media will tell them the opposite for the rest of their lives. Appearance matters – often in a bad way.

On a more positive note, my daughter is very beautiful. She takes after her father:)




Do we really need the moon? Thoughts on the UK’s referendum

This made me laugh today:

Thanks @llordllama and @daniel_barker. Needless to say,  I haven’t done much laughing this past week. I might as well tell you now, I voted to remain in the EU (as if you couldn’t tell), but even I didn’t really believe ‘we’ would vote to leave. I don’t know why I didn’t think this would happen – I suppose in the same way that one doesn’t think that the world is ever going to end (yes, I know it’s Not the End of the World),  tigers are never going to be extinct, etc. It just seemed too big to happen (too big to fail – ah-ha!), such a big change…although of course we won’t really feel any changes yet, it may never happen, what about Article 50…?

But we are feeling the effects of ‘our’ decision already – look at the mess our two main parties are in, and that is only one example. [Can anyone tell me what’s happened to the Lib Dems in all this? Rhetorical question, I will look it up.] More worryingly, (1) it seems that racist incidents are on the rise partly because (2) people who voted to leave the EU because they (the voters) are racist actually think that, now ‘we’ve’ voted to leave the EU, their immigrant neighbours will have to leave the UK. I personally know of people who voted to leave solely because they wanted their ‘foreign’ neighbours to go away. It is madness. I have always thought/known that humans are awful (apart from when they’re not) but I’ve generally been able to shy away from this thought, placing it at the back of my mind behind pandas, crochet and the works of J.R.R. Tolkien, but this past week (not to mention that awful goings on in Istanbul and everywhere else but sadly these have always been no more than background noise because otherwise how would we get up in the mornings?) has shoved it right to the front of the thought-queue.

Apart from being slapped in the face by the continuing awfulness of people, the EU referendum result has just made me plain anxious. Like a before-a-piano-exam anxiety sick feeling – I think this is mainly because I don’t like change very much but also because every social media outlet is full of angry people telling/reminding me how bad things are/going to get. I don’t, as some have argued, think people should calm down and just get on with their lives, I just think I should stop looking at Twitter. In any case, I am also angry, partly because I don’t think we should have had a referendum in the first place. It’s not the public’s job to make huge political decisions. That’s what politicians are for, for better or worse. We [as I have just been getting confused about on Twitter] cannot be held accountable (although we are indeed responsible) for our actions, which means the referendum is a bit like giving a child a massive loaded weapon to wave around in a crowded street…or something [hopefully a better metaphor].

Whichever way you voted (or even if you didn’t vote), it is hard, nay impossible, to deny that the UK is in a worse state today than it was a week ago.

Do we really need the moon?  Yes, of course we flipping do.

Reflections on content overload and self-filtering

This a response to Ernesto Priego’s post, which is one of the best and wisest things I’ve read for a while. Please read his post before you read mine, which is but a poor reflection, and a bit of a mind dump, so please excuse waffle and bad syntax but not foolishness.

Reading Ernesto’s post, I thought again about giving up this blog, but then I thought, no, it is my voice. It is where I share what (for good or ill) would not otherwise be shared. I’m thinking of @PatientAsPaper, #chronicLife, etc. Patients’ views need to be heard. I could share elsewhere, on Facebook we have the Somerville Foundation page where lots of CHD-related sharing goes on, but some sharing needs to go outside the “echo chamber” (as we used to say in Library Land). Sometimes, I need to write to at least attempt to be heard, because I can’t speak, or I don’t want to, or I think it’s good to let other people know I go through these things too – I like to feel like I’m doing my bit for patient solidarity and support because I don’t do much of that offline.

Of course, this is all my way of justifying the continuation of my online ramblings, most of which aren’t even about my experience as a patient! But I do try to filter. I’ve recently removed (literally) hundreds of posts from this blog because they were there like a millstone around my virtual neck – I actually felt them weighing me down – adding to the content overload which I, too, feel overwhelmed by even as I add to the problem, typing some more letters, words, paragraphs, waffle, to add to the overfed monster that is social media.

I returned to Facebook fairly recently, after a few years’ hiatus, and this hasn’t helped, but actually I find it easier to filter Facebook than Twitter, partly because of the changes to Twitter Ernesto talks about – it is a bit ‘all or nothing’, whereas Facebook, though clearly evil, has grades of filtration. And, yes, I think it [social media] is evil, or at least partly so – we are making ourselves both the marketeers and the marketed – the consumers and the commodities, even as we preach against such things. As Ernesto says, I think part of this is due to the fear of missing out, especially in a professional context:

Fear of missing out means many of us feel we need to keep an eye on social media to be mildly aware of what’s happening in our fields and in the world, but the illusion created by what looks like everyone actively broadcasting how hard they are at work (or having fun taking planes to exotic conference destinations) can also have a paralyzing effect.

This may particularly apply to librarians and other information professionals who may feel (or it may actually be) that part of their job is to engage with it, and yes, Ernesto is also right about the self-filtering/accompanying professional anxiety. I don’t know how we get round this, apart from to self-filter more, but even if you cut out all the dross [how?] the anxiety would still be there. And also, who decides what is dross? Is it ethical to cut out (‘harmless’) dross on a supposedly democratic platform? Who decides what is harmless? Etc. [One of] the problem[s] with social media is that it is both tremendously subjective and in everyone’s* faces [*yes, I am also aware of the digital divide, don’t worry]. People are consuming other people’s lives like never before – and we the marketeers/consumers want them to do it.

It’s like a new form of social evolution/survival of the fittest – there is a pressure to be [seen] as the best – who takes the best pictures [Instagram], who has the cutest kids/makes the best cakes/has the most friends [Facebook], who has the most readers [WordPress] – the rise of ‘click bait’, even on the BBC News website for pity’s sake, illustrates such things quite well. There isn’t necessarily a prize (except possibly for advertisers) if you win – but it’s the feeling we want – the high of a jump in stats or likes or admirers.

I want to get excited by new forms of social media, but now I just feel overwhelmed. Like Ernesto, I’ve been at this lark for a long time. I do feel old now (even though I’m not yet 40), and a bit behind and a bit lost these days; partly because I feel unable to filter as I used to (see Twitter changes, dumbing down of the BBC website, etc.). I feel bombarded and bored and the same time, but, conversely and paradoxically (and hypocritically), I want to enter into the mix and have people read my content. But why? Why do I want to be a commodity? Because I want to be be heard, I want to feel important and valued. I want to be a survivor in the mad world of the web. To take a more benign view, I want to continue creating: to create is to be human, it is said.

I’m not sure what the answer to Ernesto’s questions are. I think we do have a responsibility as users to filter and self-filter, and to try and take a step back from social media sometimes, to critically assess both it and how we use it. As users/creators/consumers of social we are ultimately responsible for its content – we are the transmitters and the receivers of the messages that are sent and our fate is in our own hands.


“That was a bit silly”

So said my mum, in typically understated fashion, when I told her I’d decided to reduce my anti-depressant medication (on the GP’s advice) last week. I suppose she was right – it was likely to be (and indeed was) a stressful week; I never find spending time with my family very easy; plus Mr C had gone away so I would be looking after B mainly on my own, which I find quite difficult and tiring. My only rationale for deciding to reduce my medication last week was that I had run out of the higher dose tablets. Not particularly well thought through. I was obviously feeling quite optimistic at the time – the irony! Added to the usual stresses of staying with my parents and being without Mr C, my mum and I caught some sort of sickness bug. I think B had it as well, but only very mildly, fortunately. So all our plans for visiting various places went out the window, although they might have done even had we not been ill because the weather was so awful. It was like winter!

B in winter gear! June 3rd 2016

Anyway, predictably enough, much of the week was horrible due to my mental state (as well as everything else, see above). I was angry, miserable and hateful, and ended up by shouting at my poor mum at the station on the way home (just when you might have thought it was safe). “It was bad.” [This is a quote from Modern Family, which I would love to find a GIF of, but haven’t been able to so far.]

Having said that, we did manage to have quite a nice time at the farm park – B particularly enjoyed feeding the animals –  and we saw some dinosaurs at the market, which she also loved! I think B probably had the best time of everyone overall, so at least that’s something!

My confession to my mother re: my medication started a potentially interesting discussion about ‘normal’ brains and ‘is there something wrong with a society where 1 in 4 people has a mental health condition?’, but I was on my way out of the door at the time so we didn’t get very far with it. I asked her why my brain is so weird (I thought she should know),  but she said she thought I was at “the normal end of the spectrum”, which I queried, as surely if I’m having to take medication to function properly that’s not normal, to which she gave the 1 in 4 statistic. [NB: It’s not that (as my mum thought) I have a problem with taking medication to treat mental illness]. I’m just not sure that it’s OK to have a society where a quarter of the population has a mental health condition – and if (as my mum argues) it’s not about this society (i.e. the statistic is consistent across time but it was just that fewer people were diagnosed in the past) then what is it about human beings that makes us so susceptible to mental illness – is it a biological thing or the way we’ve ‘made’ ourselves – i.e. nature or nurture? Anyhow, I’m not sure that being 1 in 4 actually counts as ‘normal’ – the norm is not the 1 it’s the other 3.

But we come back to the eternal question: what is normal? I think the neurotypical/neurodiverse labels (I like labels, sorry) are helpful and allow for more shades of grey than labels like ‘normal’ and ‘weird’, although I am quite happy to label myself as weird because that’s how I feel a lot of the time. Weird, different, alien. It’s not just the sadness and badness, it’s the feeling of disconnect from the rest of the world; the inability to enter in to it, not being able to follow the rules, not ‘getting’ it.  That alone makes me a bit cross…and sad and bad…and you can see that vicious circle approaching…

So, last week wasn’t all bad – perhaps Saturday’s start-of-a-conversation will pave the way for future mother and daughter chats. My poor mother. And we did have a nice time with the goats:


Also, thanks to @constntdreamer for listening to me ramble on!




Tidying the spare room

I’ve tidied the spare room. You probably can’t really see much difference.

Is it wrong that I want to put everything into white boxes? [I’ve tidied more stuff into boxes since the second photo was taken…]

A short autobiography in which my heart defect is a major character

This is a slightly amended piece I wrote for the booklet for visitors to the Scarred for Life exhibition. It’s based on something I wrote years ago for the Somerville Foundation’s book of ‘stories’ from adults with congenital heart defects. If you’ve been reading this blog for any length of time you’ve probably heard it all before (sorry about that), but I thought I’d post it anyway.

I was born with Ventricular Septal Defect (VSD), Transposition of the Great Arteries (TGA), Pulmonary Stenosis and various other non-heart related medical conditions which have made my life interesting. The VSD and the Transposition were both corrected at Harefield Hospital by Sir Magdi Yacoub when I was three years old, using the Rastelli procedure.

I have never been a particularly confident person, although people say I have got better in more recent years. As a child who was slightly built I was easy to knock over. At my wedding my dad mentioned in his speech that I used to get blown over by the wind! And as everyone knows, anything different about someone can be used by other people as an ‘excuse’ to bully or intimidate them, and I got my share of this at school.

As you can imagine, this didn’t exactly help with my self-confidence. Neither did my ineptness at sport and physical exercise! However, school wasn’t a complete disaster for me, because I was good at lessons and a conscientious pupil – or so my teachers said! I think this was my saving grace really, that and some loyal friends. I actually enjoyed school on the whole, and particularly so once I got into the sixth form when we no longer had to do PE!

After I left school my confidence improved due mainly, I think, to continuing and new friendships, for which I am very grateful. I went to university, and loved it. I loved my independence and made the most of the fact that no-one knew much about me. I didn’t tell people about my heart unless I had to, and, because I had more of a say over what I was doing with my life it became much less of an issue. I was more in control of my life than I had ever been – it was up to me how much I exercised, I could decide what I ate and when, I could slow down or speed up just as I wanted! It helped that I was at university to study, and having a heart defect didn’t really affect my ability to write essays.

I became a person with opinions and ideas; or rather I became a person less afraid to express these things. I decided to become a librarian, and eventually got a job as a trainee librarian.

I met my husband at our first training session (although he has now seen the light and decided not to become a librarian!), and we got married in February 2006. Physically, and in other ways, we’re opposites – he loves exercise and doing adventurous things, and water (which I hate!), and when we go shopping he can carry all the stuff I’m too wimpy to carry. He also pushes me up hills, which is great! I hope I’m not becoming too dependent on him, and that he will continue to be patient with me when I’m a difficult person to live with.

We have been through a lot since we got married, including me having heart surgery in 2008, and the birth of our daughter in 2014! The heart surgery was basically a complete re-do of the surgery I had as a toddler. I was getting get more and more tired, and I let my cardiologist know. After various tests (including an attempted MRI I ran away from!), it was decided to clean out the old repairs and make new ones. It was very complex surgery and I was in theatre for 12 hours. It must have been a horrible wait for my parents and husband  – apparently he coped by playing board games! Even after the surgery I still didn’t feel quite right and was experiencing the infamous “dodgy beats”, so I had a pacemaker fitted in 2009. This made a massive difference and I felt much better with a lot more energy.

In 2013 I found out I was pregnant! To say this was a surprise is probably an understatement. I had been told I could have children as long as I didn’t leave it too late and didn’t have “hordes” [this is a quotation from my then cardiologist], and, actually from a ‘heart’ point of view, the pregnancy was all right, it was other things that were a problem. I had obstetric cholestasis and gestational diabetes and I found the second two trimesters really stressful because I was anxious about the baby all the time. I attended the outpatients’ clinic for women with congenital heart defects at the Chelsea & Westminster Hospital. I had a lot of appointments – every week towards the end of the pregnancy. We planned a caesarean because as well as my heart defect there was also the fact that the baby was breech. However, our daughter had other ideas and arrived five weeks early, naturally, in our local hospital. So much for best laid plans, but I think she had the right idea!

Following our daughter’s birth I became a bit more unwell – feeling very tired and carrying extra fluid around, so I now take medication to treat mild-moderate heart failure. Although I feel tired more than I used to I still manage to look after our daughter (with lots of help from my husband) and work part-time in the library I’ve been at since 2005.
Despite the fact that I seem to be living an average middle-class sort of life, I still yearn to be ‘normal’. Sometimes I feel angry about having a heart defect; I feel like it’s taken things away from me and denied me opportunities I could have had – and given me things I’d really rather not have experienced! But on the other hand, I have survived this far (thanks to the NHS and its wonderful people); I’ve done things I never thought I’d do (having a baby, travelling across the world) and, thanks to the Somerville Foundation, I’ve met some lovely fellow heart-defect survivors along the way.

P.S. I think this is a very badly written piece of work, including inappropriate use of exclamation marks.