(Gall)Stones in the road

Stones in the Road is an excellent album (and song) by Mary Chapin Carpenter, that I used to listen to over and over again. And I just made a bad pun out of it.

I’ve been on the hunt for new (to me) ways of baking recently, because I have gallstones, and have basically had to give up almost all fat – even ‘good fats’ like olive oil cause my gallbladder to flare up and hurt me if I eat them. It is, to be blunt, extremely annoying. (I would like to use a word other than ‘extremely’ but I don’t like to swear in public).

I discovered I had gallstones in March, just before lockdown started in the UK. It was about 10 pm, and I was sitting on the sofa minding my own business and doing some crochet. I started to feel a pain in my right side and back, and this got worse and worse quite quickly, and then I felt sick so I went into the bathroom and called my husband for help. By this time I thought I was having a heart attack. It was probably the worst pain I’ve ever had, not just because of the actual sensation of pain but because it was so anxiety inducing. My husband called 999, and they didn’t have an ambulance nearby so they send a fire crew – they are trained in CPR and have the right equipment. By the time they arrived the pain had lessened a bit and I was able to sit down on a kitchen chair in the middle of the living room. Then the ambulance came and took me to the hospital. I was there all night, waiting in A & E, where they did some blood tests and a doctor said it was gallstones. A few days later I went for a scan, which confirmed this. The doctor asked me I wanted to have my gallbladder removed, but when I said I have a congenital heart defect he understood why I didn’t want to. So now I’m just trying to manage it with diet, and the occasional painkiller.

The pain has never been as bad since…so far, but, as I said above, I definitely notice the pain if I happen to eat ‘too much’ fat for my gallbladder to handle. Pizza is one of the worst offenders, alas, but even more innocent-seeming things like peanut butter can cause the pain if I eat too much of it, and more than one square of chocolate a day is definitely not on. So, I have bought myself a couple of ‘low-fat’ cookbooks, and then adapted the recipes a bit so there is even less fat in the finished product. It might sound extreme, but the alternative is chronic pain for the rest of my life, so I’ll take the almost-no-fat flapjack anytime.

Almost-no-fat flapjack

Spiced apple muffins: a recipe

Ingredients (makes 12):

  • 75g plain wholemeal flour
  • 75g plain white flour
  • 2 tsp baking powder
  • 1 tsp mixed spice
  • 1 tsp cinnamon
  • 40g light brown sugar
  • 1 egg, beaten
  • 150ml any kind of milk
  • 2 apples made into apple sauce (peel, chop and cut up into chunks, put in saucepan, cover with water and heat until soft enough to mash up) or you can buy ready-made apple sauce if you prefer.
  • enough porridge oats to scatter over top of 12 muffins

Method

  1. Preheat over to 200 degrees C or Gas Mark 6. Grease a 12-hold muffin or cake tin (or use paper liners)
  2. Make the apple sauce if not already made and leave it to cool.
  3. Put the flours, baking powder, spice, cinnamon and sugar into a bowl and mix together.
  4. Mix the egg and milk together then add to the bowl.
  5. Add the apple sauce and mix everything together – it doesn’t matter if the mixture is lumpy.
  6. Put the mixture into the baking tin, then scatter the oats on the top (tip – don’t put too many on, otherwise they just fall off)
  7. Bake for 20 minutes. Check if they’re cooked by sticking a knife into the biggest one – if it comes out clean, they’re done!

Dam

Mum is washing her hands in the bath

this is normal now 

for the moment

sink’s blocked

on the toilet

I try and put my phone down

on the floor

and my back goes

just like my dad’s 

gone where I thought

dam.

Automatic for the people

They made this for you,

take it,

it’s a hymn,

a song of love.

They want you to live.

I lived 

in my headphones

in my room 

on my floor.

Hiding 

and not hiding. 

I have other resting places –

Swift, Taylor, Mozart, Wainwright –

but this one is home.

Executive functioning

If someone had a security camera 

trained on the rehearsal room 

they would have seen me wandering, thinking 

I was ten minutes early, 

then wondering why 

no one was there at five to, 

then realising the rehearsal didn’t start til 

half past, not on the o’clock 

(five, as it happens). 

Then I had to pretend

I wasn’t in the right place at the wrong time and 

gather my dignity like my belongings 

(cardigan, coat, bag) and 

walk confidently out as

the students came in. 

Then, I retreated to a computer 

behind the roses to lick my wounds

(emotional only) while squinting 

due to the sun coming through 

the window between the leaves at

just the right height to blind me but 

it looks like starburst and

I have been inside all day, 

grey and airless place and 

I don’t mind.

Blackcurrants

Even though I’ve done my coat up 

the brumal wind flutters at my neck. 

The blackcurrant field is still here.

For now. 

It’s blasted bitter cold and I’m typing ‘cos I’m bound to, 

though my frigid hands are ice in pain. 

Britishly, it’s deceptively sunny. 

The bus is nowhere to be seen.

Again. 

My polyglot phone doesn’t know 

whether to predict my text in German, English or Swedish. 

Typing with cold habdsbisbqbvit masochistic.

Hurry ypl bus.

Growing older with a congenital heart defect: a seminar

Last Saturday I and about 25 other people with congenital heart defects attended a half-day seminar about getting older with a congenital heart defect, run by the Somerville Foundation. It was held in the illustrious surroundings of South Kensington, at Imperial College, right near the museums. I hadn’t been to that area for years, and it wasn’t quite how I remember it – it was in fact much nicer and easier to navigate. Perhaps there have been improvements – it seemed a lot more pedestrianised, which was good, and I have now found the nearest bus stops – also right next to the Royal Albert Hall. But I digress.

Much needed coffee

The seminar itself didn’t include anything unexpected, although it was still useful – it’s always a good thing to be able to talk to people in the same sorts of situations to you, if nothing else. The main points were:

  • People with congenital heart defects are (obviously) still subject to all the ‘normal’ health problems older people can expect to encounter. I think this is rather unfair, but there we are.
  • We (people with CHDs) need to be mindful that we are also more likely to develop certain conditions as we get older (e.g. type 2 diabetes, kidney and liver problems) so we need to try to take steps to mitigate this (i.e. eat healthily and exercise as much as we can).
  • We really need to make sure we have at least a summary of our medical notes on our person at all times in case of emergency or other hospital/doctors visits. Also, we need to try as much as possible to encourage any non-CHD specialist medics to liaise with our CHD medics otherwise there is a risk that they might do more harm than good. I’ve been very fortunate (so far) in that most non-CHD medics I’ve had contact with have been really good at liaising with the Brompton Hospital (where I have my CHD treatment/clinic visits), especially during my pregnancy and after B’s birth. However, some people have not been so lucky. We talked about the idea of advocates, which I think is a great idea, particularly as we get older and less able to fend for ourselves. But I guess the question is, who would do this? It might be a role for the Somerville Foundation, but they are a very small charity so I’m not sure how feasible this would actually be.
  • It seems that most people in the room had had (or were having) some issues (to put it mildly) with NHS administration. This is obviously a worry as we will probably need to access NHS services more and more as we get older. NB: I love the NHS but there are clearly issues that could be resolved fairly easily (she says) with a bit of forethought and patient-focussed systems/processes.

After the seminar we went to the V&A for (a very late) lunch, which was expensive but delicious. It was probably worth the money to sit in such beautiful surroundings (but I can only say this because I’m working full time and a lot of people with CHDs are not able to do this).

Dining room – Victoria & Albert Museum
William Morris Window, V&A restaurant

Daemon voices


Magical, outside of time, 

beautiful and disarmingly divergent

–  a spark plug place that doesn’t fit

into the workaday world

Like the people in it.

(Or at least that’s what they would have you believe).

A little light.

There is nowhere 

else 

where I feel so 

literally connected 

to the place,

enduringly attached,

letter by letter, 

as I read-walk the pavements,

as though

my fingers could merge into the stones.

[They are so soft.]

I want to touch them

as if they are living things.  

The city is a creature;

a sand-coloured cat,

I want to put my face into its fur.

Catching my breath

ruach

has always been one of my favourite 

words

of course it is 

feminine

and all-encompassing:

“a person’s emotional, 

intellectual and 

volitional 

life”

and it is seated in 

the heart

which suits me just fine

“it contains the moral virtues

and the ability to distinguish 

between good and 

evil”

and it means

breath

wind

spirit

soul.

Ghost.