This list of words is not exhaustive

Word Art (1)

I made this graphic (using WordArt) because I wanted to see how many positive words I could think of when thinking about my heart defect. So I just made a random list of words that sprang to mind when thinking about it, put them in a heart-shaped word cloud and categorized them using colour. As you can probably tell, the black ones have negative connotations, the blue ones are (sort of) neutral and the red ones have more positive connotations – all according to my subjective viewpoint, of course.

Once I’d finished the word cloud I realised how childish it is: the use of the word ‘tablets’ instead of ‘medication’ (or even medicine); ‘teddy’, ‘pricking’ (this refers to my sternal wires pricking me inside my chest – it happened a lot in my teens/twenties; not so much since the old wires were removed when I had surgery in 2008). You might be wondering why ‘picnics’ is in there. This is because when I was a child we always went to Harefield Hospital for my annual check up in the school summer holidays, and we always took a packed lunch and ate it outside. The ‘birds’ come from that, too – I remember the sparrows used to come and peck at our sandwich crumbs. I guess the childishness is explained by the fact that a lot of my thoughts to do with my heart defect are also to do with my childhood.

I think it’s quite encouraging that I managed to list so many positive or at least neutral words. When I first made the cloud I thought it was overtly negative, but then I realised lots of the words in the list are simply things that are just there – they are merely part of the experience of having a heart defect; not bad, not particularly good either, just there (bedpans, tests, screens, wires (although wires are bad if they hurt you)). Some words are a bit ambiguous – e.g. ‘parents’. I made them blue even though it is not really the case that they are ‘just there’ (and I’ve just realised I forgot to add ‘guilt’ to my cloud), partly because it seems the most diplomatic thing to do. ‘London’ is there because it’s always been the background to the story of my heart. When I was in hospital in 2008 I drew a picture of the skyline I could see from my window (hence also ‘drawing’) and at night when I couldn’t sleep I pretended the shapes I could see were animals instead of cranes and tower blocks.

I put ‘waiting’ in black, because I’m impatient. I think the other black words are self-explanatory, although some things like catheters and stitches are not really bad in themselves (they are there to help us) they are not very pleasant to experience.

This list of words is not exhaustive.

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 🙂

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“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!

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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:

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

 

 

 

Confessions of a struggling mother

On Monday, I turned into That Woman. You know, the one you see (and hear) yelling at her child in the middle of the high street. B was playing with her “sticks” (some coffee stirrers), drumming on the pavement, and didn’t want to follow me to the bank machine, which I had to go to because I had no money on me for the bus ticket I thought I’d lost (it was in my pocket). Because I ‘made’ her come into the bank she then threw her sticks to the ground in protest, then threw my work lanyard (which she has taken to wearing) to the ground also, and said “mummy pick up [the sticks]”. I didn’t want to pick up the sticks and said so and asked B to pick them up instead, to which she refused. There was a stand off, which would have been a lot better had it been a silent stand off, but sadly it wasn’t – I made most of the noise, getting increasingly louder and ending up (if only this had been the end of it) shouting at B to “pick them up NOW!!!!!!!!!!!!!!!!!” (the number of exclamation marks increases with the loudness of the shouting). In the bank. It was not a good moment. Of course B didn’t pick them up (why would she?) so I picked them up and said I would throw them away (I didn’t – no follow through=bad parenting), to which B cried most noisily and sadly and still refused to follow me (again, why would she?- No one in their right mind would have followed this crazy shouting woman) so, having totally lost the plot by this point, I bent down and shouted “NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!” right in her poor, sad, face. I had become That Woman.

I then picked her up and put her in the pushchair and haired off, B wailing piteously, to the bus station, but we had missed the bus by this point so I went to buy some fruit (attempting to be a better parent by feeding her healthy food?) in Sainsbury’s but we kept getting in everyone’s way with the pushchair and that was the last straw. I broke down and sobbed next to the cucumbers. B (who had previously calmed down) joined me. Eventually I pulled myself together because I had regained enough sanity to see that my crying was making B cry, and managed to buy the fruit and get to the bus stop. The bus came and we went home. B was asleep by the time we got in the door.

I lay awake that night and cried a bit more.

This incident made me think more about That Woman. My only defence for my behaviour was that I was tired to the point of exhaustion, Mr C had been away so I’d been looking after B on my own more than usual, and I hadn’t had any lunch. If there is anything positive to be gleaned from this sorry tale it is that it has made me more empathetic with those women like me who shout at their children in the streets. I have a helpful husband, enough to eat and a steady income and I still get overcome with anger and emotion when things get too much. There isn’t an excuse for shouting, but it is easier than you might think to get into that state.

I researched ‘shouting and toddlers’ (as I do, the librarian in me can’t help herself) and found some useful links:

How to handle your anger at your child

Discipline and cooperation

Toddlers: your game plan for the terrific twos

I have to admit, reading some of this made me feel worse before it made me feel better, but that’s OK. I know I need to find a way to deal with my anger – it has always been a problem. The irony is, my dad was/sometime still is very shouty and I hated it. I can’t cope with people shouting at me – I just cry, even now – and I really, really, didn’t want to be like that with B. Must try harder. I’ll let you know how it goes…

Lisa Devine Photography

Mr C’s brother sent us the links to the official photos from his wedding the other day and they are (as they say) a-mazing! They were taken by Lisa of Lisa Devine Photography, who is based in Glasgow but from her website it looks like she can travel (in fact, it says she loves to travel, which is good news if you’re not in Glasgow!). I love the style of photography Lisa used – it was quite different from most other wedding photos I’ve seen; much more of a documentary style, rather than lots of posed, group shots (although there were a few of those too), and the angles she took the pictures from are ones that you wouldn’t necessarily think would work, and yet they do, wonderfully well. The pictures feel really personal and intimate, but Lisa was very unobtrusive on the day – I hardly noticed she was there most of the time. Best of all, I think she did a great job of reflecting the personalities and joy of the my brother and now-sister-in-law on their wedding day. A beautiful record of a beautiful day.

January with a vengeance

I can’t really remember what we did in the first three weeks of January…tried to get back into our routines after the Christmas break I suppose. It was actually quite nice to go back to the playgroups and see everyone again. We met up with some friends one Sunday afternoon, which was really good. I went to the doctors a few times to try and sort out my medication (Ramipril). We are still trying to increase the dose, so I’m now taking 5mg per day with no side effects as yet, although I am a bit worried that my blood pressure is going to get too low as it was already quite low last time I had it taken when I was only taking 2.5mg/day. We shall see, I have to go back and have a blood test (to make sure kidney/liver function is OK) and a blood pressure test in 2 weeks. Also, I forgot to say before, I had a bit of a mental bad patch in so I’m now taken double the dose of anti-depressants as well, and things have been better since then apart from the odd blip last week, which was probably due to…

NOROVIRUS WEEK OF DOOM!

We think Babymouse got the virus from somewhere. She was the first to be ill, followed by me, then Mr C. My lovely mum came to help out as we were all ill, and then she got sick as well! Poor mum! Fortunately, the virus seemed to weaken each time it attacked one of us, so my mum was less sick than everyone else, but poor Babymouse was the most badly affected. She actually got over the virus fairly quickly, but it has left her with a (hopefully temporary) intolerance to lactose, so she can’t take her usual milk and has been prescribed some lactose free ‘milk’ by the GP. Hopefully this will help her bowel to recover and we can gradually re-introduce her usual milk in the next few days. Poor B was very unlike herself last week – she is normally quite active and chirpy, but she was very lethargic and unhappy – basically she was either sleeping, eating or crying. I suppose it’s not really surprising because she was obviously not well and hadn’t been able to eat properly and she’s also teething again (it seems almost continuous) with her molars, which apparently are some of the worst teeth to have to deal with, teething wise. It was quite horrible to see her so unhappy and not know what to do. We do have the luxury of having relations who are doctors, so we did call them, as well as the health visitors, and both were very helpful. I just hope we can reintroduce her milk without any further problems. At least she is eating a lot more ‘proper’ food now and isn’t entirely dependent on milk for sustenance, but it is still the major part of her diet.

This week is my last full week of maternity leave – back to work next Thursday! It’s come round very quickly since we passed the Christmas barrier. I found out last week that they are not replacing the other half of my post, at least in the short term (which I fear means never), so that will be interesting…