Thursday, August 21, 2014

haiku #2 - my life as a cyborg

Pacemaker? Really?

I'm not sure a haiku should be this repetitive or have such short sentences, but I'm allowing it since this is an almost exact transcript of what an insensitive security person with a dreaded metal-detecting wand recently said to me IN A VERY LOUD VOICE when I asked her not to scan me.  To be honest, I was pretty upset at the time, not least because she had caught me at a very inopportune moment when I'd only just managed to stop crying about my heart situation en route to the venue, but even if I'd met her while in fine fettle, this would have been more than a little insensitive, no?

Anyway, now I've written my "haiku", I'm over it and I thought it might be a good time to revisit the topic of my heart device since it's been a good long while since I had it fitted, almost 18 months, I think, and I realised this morning that I feel very differently about it these days and I've not mentioned it here for ages.  Hopefully some other young pup (I can still call myself a young pup in the scheme of things, can't I?) awaiting a similar procedure will stumble across this and feel soothed in some way.  I know I would have loved to find a youngish person's positive perspective on this when my own procedure was looming over me.

The device I have is called a CRT-D.  It's not the type of pacemaker that your average elderly type might get.  Unlike a bog-standard pacemaker, its main function is to resynchronise the two sides of my heart (which beat out of synch because one side is stretched and bigger than it should be) so that it can pump blood more effectively.  It also does more traditional pacemaking and has an internal defibrillator built in so that my heart can be shocked back into a normal rhythm if it starts behaving in a way that might cause sudden death, something that people with hearts like mine are a bit more susceptible to.  Dulcie can explain it quite well.  She calls it my magic machine and says that my heart used to go wobble-wobble but the magic machine makes it go boom-boom instead.

So, here's how I feel about my "magic machine" now the dust has settled.  First and foremost, I really believe the device has improved my health.  There's no definitive way to prove this, but certain symptoms changed quite noticeably as soon as it was fitted - I stopped getting pins and needles so badly in the middle of the night and I no longer felt like I was about to drop down dead while out and about.  This might just be because the pacemaking element of my device helps my body to cope with the low blood pressure caused by my medication, but I now wonder if I should have been more worried about those near-death feelings while I was having them...  Anyway! 

Six months after getting my CRT-D fitted, I had some tests done and was advised to go on the heart transplant list because things were so bad.  (I realise I never blogged about this - it was ridiculously traumatic and I am only just beginning to come to terms with it really.)  That very same day, coincidentally, my pacemaker was fine tuned while my heart was scanned to make sure it was operating at optimum capacity.  For weeks after that I had all sorts of weird twinges, like my heart muscle was actually tired, in a way that reminded me of having braces tightened on my teeth as a teenager.  Anyway, four months later, my tests were repeated and I was told that things had improved enough that I wouldn't even be allowed on the transplant list now and that my heart had got a bit smaller too.  This could have been caused by one of many factors, but I do hold my pacemaker partly responsible and I LOVE IT for that reason.

(I'll add, for total transparency and since I don't want this just to be some weirdo pacemaker propaganda post, that this hasn't been a miracle cure, far from it.  Things are still very bad with my heart, but I did not want to have to face a heart transplant and, for now, I don't have to.  This is so good.  Go, pacemaker!)

When I was waiting for my pacemaker to be fitted, I wanted to know what it would look like and every picture I found on the internet made me think it would look VERY BAD INDEED, but I have no visible lump/bump from the device at all.  I don't know if that's to do with my "pouting bubbies" (I'm reading some historical fiction at the moment, sorry!) but in most positions that your man on the street might see me in, the actual box can't be seen AT ALL.  It can be felt, but, given its pouting-bubbie location, nobody who didn't already know about it is likely to be touching me there!  

Sometimes it's not that comfortable.  For a while (and I mean quite recently rather than when I was healing) it itched like mad, but that seems to have calmed down.  It used to make my diaphragm twitch, a bit like deep-set hiccups, but that has also stopped happening.  It took a lo-o-o-o-ong time (I mean over a year) before I could comfortably lie on my left-hand side.  Sometimes, if I've been walking around a lot, I'm aware of its weight and it feels kind of bruisy.  It's pretty uncomfortable if anything touches the lumpy bit (battery pack?) at the top of it, agony if Dulcie accidentally grinds her entire body weight into it.  All that said, 90% of the time, I'm not even aware it's there.  It's definitely settling in!

18 months on from having it fitted, my scar is still decidedly visible, although slightly smaller than it used to be.  Its position makes it harder to hide than I'd imagined, but it really doesn't bother me these days and I don't usually care if people can see it so it doesn't stop me wearing whatever I fancy.  Sometimes I catch a glimpse of it in the mirror and think it actually looks pretty cool.  Who'd have thunk it?!

I guess the only other thing to mention is my feelings about my defibrillator.  This was possibly the scariest aspect when I had the thing fitted at first (remember how I used to go to the cinema on my own so I could get over the fear of being zapped while out alone?) but now it is nothing to me.  In fact, not nothing, but a GOOD something.  Thus far it hasn't shocked me and I think I've done pretty much every activity that I would have worried might set it off.  It took a while to get my head round it, but now I really do feel it's a little safeguard, something that probably won't be needed, but will be there (thank goodness) if it ever is.  I'm glad to have it.
Phew!  I think that just about covers it.  If you're still reading and considering joining the pacemaker/defibrillator club (or even if you're just nosey) please feel free to fire any questions you have my way, either in the comments or by email.  I'm happy to answer whatever you might care to ask.  Here's how my pacemaker consultant answered one of Graham's questions, just for starters - "I don't know what it is you're planning to do, but you'd have to be pretty damn impressive to cause the defibrillator to go off."  Har! :)

Wednesday, August 20, 2014

fabulous freebies!

Thanks to Marceline's timely reminder, I managed to nab a free swatch of eco canvas from Spoonflower.  I wanted to choose something I could actually use in a project, but didn't have any small-scale projects in mind and there was so much to choose from and so little time.  In the end, I opted for this button fabric by Heidi Kenney, which I love, but that doesn't mean I'm not stressing out over all the lovely button-based designs I didn't choose this time.  Dulcie spent £1 of her holiday money on five old buttons last week (go on, yourself, Dulcie!) and I've been wondering where to put them, so I think I'm going to make her a little pouch from this for her to store her new collection.  The swatch is 8 inches square, so it should be a fine size for a beginner button hoarder :)
I think the free swatch offer is open until 4pm today, but don't quote me on that - I find time zones very confusing.

Tuesday, August 19, 2014

time-travelling tuesday (part 15)

I didn't do Highland dancing, as you'll find out, but I always kind of wished I did.  I snapped this photo at the Aberfeldy Highland Games six years ago.

25th April 1988
Today I went swimming. Yet again I swam a length.  Julia and I made a secret code.  This is A [three scribbled out pictures then a picture of a cloud with a crescent moon peeping out from behind it].  P.S. DO NOT COUNT SCRIBBLES

26th April 1988
Dear donna,
I would like to thank you for being my diary.  Today at singing I had to play the melodica and Emsy had to play the xylephone to the sun has got his hat on.  I had to have an extra practice for tap and ballet.  I can play the melodica without a piece of paper.

[This was way more exciting to me than I make it sound - I had been dying for my turn on the melodica for years, or so it felt, ever since my sister had her shot.  Whoever was having a turn was allowed to take the melodica home after school and I practised my little bum off.  I still get excited at the sound of the melodica to this day.]

27th April 1988
Dear Donna,
I am writing a story about a beaver that goes to the dentist.  I did some sums.  Dad gave me a calculator.  Our project is about the dentist.

28th April 1988
Today I was dancing at a coffee evening.  First it was highland but I don't do that then disco I don't do that either then ballet then tap.

29th April 1988
Today there was no dancing.  Tonight I am sleeping in the spare bedroom up in the playroom part.  Kerry is sleeping in the actull playroom itself.

[I wish I'd written more about this because usually our nights of sleeping upstairs were filled with carefully scheduled events such as farting and burping competitions and throwing iced gems up in the air and catching them in our mouths.  Did such shenanigans take place on this evening?  I guess we'll never know.]

30th April 1988
It is the last day of April.  Gails niece Louise and Gail and Peter came to visit us.

1st May 1988
It is a new moth month of the year.  It is the month of my birthday.  Granny and Finlay and Grann and Flora and Lyndsay came to see us.  I was singing to Lyndsay.

Saturday, August 16, 2014

just don't do it

 I took photos of these trampoline safety posters when we visited the aquarium back in May and just realised I forgot to share them.  Please also note the name of the trampoline company - Super Tramp Trampolines.  Chortle!
This one is my favourite.  I bet you couldn't do this if you tried.

Thursday, August 14, 2014

work in progress

 Dulcie's been in her new bedroom for about four weeks now, but there's still plenty of finishing touches to be made.  Here, at last, is a picture of the curtains I made.  Pretty swell, huh?  I seriously love them.  Want to know my top curtain-making tip, one that I discovered myself and wish I'd known earlier?  If you want curtains that touch the floor, make them a few millimetres shorter than you actually want them.  I painstakingly hemmed these by hand so that they were just glancing across the carpet, only for them to sink down as they settled in, only a millimetre or two, but enough to make their hang not quite the thing of beauty it was initially.
I've started hanging pictures and putting in all the bits and bobs.  I'll share more photos soon, but here's a (very bad) picture of Dulcie's wall of many wonders in the meantime.  I've been collecting cards and prints for her over the last year (or more) for this purpose and I'm so happy to see them in situ at last.  I hung these while Dulcie was at nursery one day, thinking she'd be really excited when she got home.  When I showed her this, however, she burst into floods of tears instead.  Turns out she had wanted to help me to hang them.  Heartbroken would not be an exaggeration.  She cried for ages until I ended up crying too.  Sometimes it feels like I can do no right...and I only want to make her happy!  Waaa!
Anyway, I think I'm going to be getting a gold star for interior design soon (if only I was still at Brownies so I could boast about my interior design badge) but perhaps not for interior-design photography.  I've already got lots more in place that I want to share.  Hopefully I'll manage to do it justice soon.  If I can get a better picture of the wall of many wonders, I'll add some links to let you know where some of the prints/cards came from.
I love Dulcie's bedroom!  I'd love it even more if she'd actually sleep through the night in it...

Tuesday, August 12, 2014

time-travelling tuesday (part 14)

Such grace and elegance!  No, really, I can't believe my posture was ever this good.  This is not how I generally dressed for ballet.  I think I only wore a tutu about twice in my life.  I wish I did have a photo of myself in the ballet cardigan my mum knitted for me.

18th April 1988
Today I went to swimming at about 11 o'clock.  In the afternoon I did gym.

19th April 1988
I went for a practice at tap and ballet.  We got it right every time.  At school we had singing in the morning.

20th April 1988 [freckly face with a cheesy grin drawn here.]
It is Wednesday.  Julia came over to practice tap and ballet.  I was wearing ski pants [whoot-whoot!] and a checked blouse with a Micky Mouse jumper on top of it.

21st of April 1988 of of of of of f f f
Tonight I went to brownies.  I finished off my mat.  I didn't do much else because Percy [cat] sat on my knee all day.

22nd April 1988
Tonight I took Kraig [dog] for a walk with mum.  I practised ballet and tap for an hour.

f 23rd ff April off 1988
Today I went to Aberdeen to do some shopping.  I got a Gordon The Gopher. (GTG).  I have a sore toe.

24th April 1988
Today I went to church.  There were only four people at Sunday school.  I made a tie for Gordon.  Kerry and mum went to see a lamb being born.

Sunday, August 10, 2014

there's got to be more to life than committing suicide*

Like I said yesterday, we didn't see much sport during the Commonwealth Games, but we did make it along to one of the accompanying "festival" events - an outdoor screening of That Sinking Feeling in Kelvingrove Park.

It was great to see the film again in this setting since parts of it are filmed in Kelvingrove Park, and the park was just a pretty amazing setting in its own right too.  The trees behind the screen were so massive, the weather was glorious and seagulls were wheeling across the sky.  There was also a bar on site, so we enjoyed a pint from a local brewery along with the American hard gums we had smuggled past security.  (Security is a whole other story...  I feel a maudlin heart haiku brewing!  Ha!)
The bandstand has just recently been refurbished and looks great. It's lovely to see it back in use. After the film, there was a band on too. Fun, fun times.  Hooray for baby-sitters!
* Please don't stage an intervention - this is one of the rather amusing lines from the film!