Hello, is it me you're looking for?

I can see it in your eyes, I can see it in your smiiiiiile! *cough* enough of that...

Long time no see. 

I've been neglectful of this blog, because it is exhausting thinking about being ill all the bloody time. But a friend of mine pointed out the reason I do this blog, WHICH IS; to help people, like me, who have this shitty heart problem understand it more. 

Especially the day to day living part.

So, to get you up to speed...Hi, my name's Sara! I'm 28, I have Dilated Cardiomyopathy and am recovering from Heart Failure.

Note my 'Oh feck!!!' face

I told you all that I've been trying to get back to doing a bit of work. It's challenging to say the least. One day I can feel pretty ok and sit and my desk, then get through a few books and an article or two (writer/editor for a living). 

THEN the next day I'll go downstairs to make breakfast, and am so tired out from doing this, that I'll nap until the afternoon.

I have wonderfully understanding clients and friends. People who know that I may miss a deadline, but only just...I'd rather eat poo than hand in a project late. So trying to juggle this new workload is a challenge.

The freelance jungle is tough and not forgiving to a sicky invalid like me. So any paid work I come across, I pounce on and devour (even the bones.) This has lead to me taking on projects so frustrating that I have wanted to smash my own brains out on my desk.

I'll give you a couple of examples. I had one charming writer, who decided to react to my editorial notes by telling me that I clearly didn't understand his comic, because I'm a 'girl' (no...it's because it was shite). And another who took the view in his book that the depressed girl who self harmed just needed a guy to fix her.

Yo, dickheads!  A) Do your research, mental illness gets a shit rep in mainstream media and I won't publish any crap that highlights DAMAGING stereotypes and B) you ever use my gender as a throwback to why I can't work in or understand comics, I will tear you a new one and drop your book like a hot, sexist potato.

Moving swiftly on. Money wise I'm still utterly buggered. I have no idea if I'm entitled to benefits, because we have no idea how this heart condition is going to affect me long term. I'm trying to figure out if I can afford to do my National Insurance contributions somehow, otherwise my pension is screwed.

Better news on the 'getting hold of info on my condition' front though! I joined the Cardiomyopathy Association. They have a direct line or e-mail (if you fear actual human contact, like me) where you can ask dedicated heart nurses ANY question you want.

This was helpful, as someone who was a slight hypochondriac before being told they had a life threatening heart condition.

They also send me a quarterly newspaper...not so great, as the first article I looked at told me that people with my condition, and an ejection fraction (force heart pumps blood round the body) below 30% (mine's 25%) were more likely to die...NOT COMFORTING!

I still have no idea if my heart is improving or staying the same. My scan is booked in for September 10th then I'll see my heart nurse later in the month, if she remembers to make the bloody appointment.

Keep everything crossed for me!!

Xx 

Money, money, money....MONEEEEEY!

It has been a big couple of weeks for me!

I've tried to start getting back to work. I'm a freelance editor and writer, mainly in comics...the publishing side, but a bit of journalist stuff too. I've missed working. I have tired to keep up with a bit of it, but to be honest it's just been too much.

It's odd how this heart business has affected my work. It's the fatigue that has had a massive knock on effect, I have days where I'm too tired to get out of bed, let alone stare at a laptop screen, intently looking for spelling mistakes and grammatical errors (I know I'm guilty of that in this blog) 

I finally think I'm going to have a regular writing gig, which will help so much at the moment. I was due to go back to work the Monday after I went into hospital. This was a big deal. I'd spent two years struggling with freelance after being too ill to do an office job.

I suffered (unknowingly) with endometriosis for six years, after having my operation in February I'd started feeling so much better (I used to pass out from the pain at random, with no warning) and I decided to go back to work.

Before getting into publishing I worked in the theatre, my first love. I was a producer and events type person, I wanted to go back to that and keep comics on the side. No chance of that now. Events is a really high pressure and time consuming job that my body just isn't up to any more.

I get a little sad about that, but I love working in publishing so I'm going to just keep pushing that forward.

I want an Eisner by the time I'm 35.

With the high of work came the low of the NHS. I have had a huge blow up with them. We are not friends. My follow up appointment with my cardiologist was moved from October to JANUARY! My scan is in September...I am not waiting until January to get my results. 

This scan will show if my heart is definitely improving, staying the same, or (God forbid) getting worse. If I have to wait 4 months for my results I will go insane.

I'm going to try and make sure my heart nurse can go over the results with me at the end of September...and if she can't then I'm going to be belligerent and move my scan to December/January time, and if they don't like it...TOUGH TITTIES.

Right...I'm off to write other stuff and eat more heart shaped strawberries. Laterz y'all

Healthy eats, for healthy hearts!

I know I said I'd do this post on healthy eats yesterday. But I have had a truly poop couple of days.

My Gran (who has dementia) keeps forgetting about my heart condition and constantly bitches at me about how I don't do any of her cleaning any more. And someone I loved dearly discarded me like an old sandwich. 

As if that wasn't crap enough...

I woke up on Wednesday night with a stupidly sore chest and a heart rate up in the 100bpms again. My doctor thinks I may have a virus and this sucker has really wiped me out. My chest still hurts and my heart rate has settled, but I'm keeping an eye on it.

But onwards and upwards. I shall keep you all updated. Fingers crossed it's all calmed down now.

Anyway...FOOD STUFF!

Salt!
If you've had heart failure your body retains water and salt is not your friend, because it makes you retain water. If you're on diuretics you especially need to avoid salt for this very reason...or that pesky heart failure thing will happen again.

DO NOT USE SALT SUBSTITUTES! These are even worse at making you retain water...RETAINING WATER IS BAD! I cannot stress that enough...or use the words retain and water enough either. 

Salt intake for a normal human should be about 6g a day.

Fish!
Eat oily fish, Omega 3 is good for you. Not necessarily directly linked to heart health but I was told to do it by a doctor, so I'm gunna.

Oily fish listed in a couple of my heart booklets includes; fresh salmon, fresh tuna (none of that tinned crap), mackerel, sardines, herring, trout and pilchards (yuck).

Nice quick east recipe for you: Get a salmon fillet. Stick it on some foil, cover it in lemon juice and pepper, wrap it in a foil parcel and bake for 15-20mins at 200°C or gas mark 6. BOOTIFUL!
Avoid smoked fish as this can be very salty!

Fruit & Veg!

Eat 5 portions at least a day! They are full of good vitamins and make an excellent crappy snack substitute. Try and have veg with at least one of your main meals every couple of days. I have it every day.

Stick some blueberries in the freezer, they taste amazing. Cut up a pineapple, stick it in the oven on a very low heat for 15mins...again NOMMY!

Make low fat ice cream by freezing some bananas then blend them with some other fruit or peanut butter/nutella for a delicious frozen treat (unless you hate bananas...then that would be disgusting)

Cut up some carrot sticks and make your own hummus, this is a great recipe. 

Dairy!
Substitute your dairy stuff for low fat dairy products. I know that skimmed milk tastes like watery crap but it has a much lower fat content. Fat clogs up your arteries and this is bad!

Frozen yoghurt is a great alternative to ice cream! Cut down on the cheese, cheese also has a lot of salt so keep your portions low.

Use low fat spread on your toast! And try some vegan baking, these choccy orange cupcakes are actually really delicious!

Saturated Fats!

These are not good at all for anyone, they're in all sorts of food that tastes really good; like sausages, cakes, biscuits, cream, SAUSAGES, cheese, butter and other fatty meat...I like sausages.

I've switched to lean meat (chicken and turkey) and I now eat veggie sausages. Quorn mince is now a staple in my recipes. I use it in my chilli, bolognese, lasagne and cottage pie.

Saturated fat is linked to heart disease. This shit is not good for your body. If you have a high fatty diet it'll end up clogging up arteries or you'll get fat and put more pressure on your ticker.

This stuff has been the most drastic change in my diet...because I really LOVE cake and I am overweight thanks to years of eating crap. I've lost a couple of stone since mid April and it is making a huge difference in how I feel.

But.......OMFG DO I MISS DOUGHNUTS!

Alcohol & Caffiene!
Do not have any of this if you are on heart drugs. Alcohol can damage your heart OR react badly with your heart medication and caffeine pushes your heart rate up, so cut that shit out!

Finally, drink water. About 5 glasses a day. I have a 1.5ltr bottle and I drink one of those a day. It helps keep your metabolism going and keeps clearing crap out of your body to keep your kidneys happy.

This little card is a list of what you need to look out for on the packaging of your foods. This has been a huge help to me if I've been caught out and want to buy something quick to eat. It is amazing how much salt is in EVERYTHING!

Well, that's all for this one. I hope it helps even one person, because when I came out of hospital I had no clue what to do with my diet.

I'll start posting some proper healthy recipes soon and maybe even a one week food diary so people get an idea of how I plan my meals out for the week.

I MADE IT TO 28!

Hello all!

Sorry it's been a while between this post and the last. I needed a break from everything heart related. ALSO I thought it'd be fun to try and re-decorate my entire house in a week.

Turns out this was not fun...but my downstairs looks amazing (not talking abut my vagina, but that looks great too.)

I turned 28 on July 3rd. All I could think about when I woke up was "FUCK YES, NOT PART OF THE 27 CLUB!" I am sure I'd be mourned just as much as Winehouse or Cobain by the plebeian masses.

To celebrate not dying I held a BBQ on Saturday and had all my favourite people turn up (well most of them, a couple of the sick ones were kept away) 

I bought enough meat to feed a small country and buns to feed about six small countries, then let other people cook it all for me.

I had such a wonderful day, all the people who mattered were there, my best friends and close family, who have helped me through this shitty ordeal.

Everyone got me amazing and thoughtful gifts (the ones who didn't were thrown on the BBQ) and I felt thoroughly spoiled and content.

Look at my Vivienne Westwood wellies!!! ADMIRE THEM!, GO ON!

I had a couple of supposed close friends who just didn't turn up. Which has upset me and got me thinking about the people I've barely seen since coming out of hospital. Those fair weather friends we all seem to accumulate.

I keep scolding myself for being upset over it, but this type of shit really does let you know who your true friends are. I may be broken, but that doesn't mean I can just be discarded until I 'work' again or can come out dancing all night on tables.

I was scolded by one who didn't turn up, who told me I was being ridiculous for being cross with him. He didn't understand how much my birthday meant, even though I'd told him about being so frightened I wouldn't make it to the next one and that I had been putting all my energy into making sure I was well enough to even have a bloody celebration.

He won't be invited again...and if he does turn up he'll go on the BBQ with the people who got me shite presents.

But anyway. No more negatives! I am enjoying feeling loved and also celebrated as a decorating genius (the living room is a lovely shade of mint and teal. Very zen innit). 

I will do that post on good healthy heart food next time! It'll go up on Thursday, I'll be the next Nigella!

Letter of doomy doom doom.

I know I said I'd do a post on healthy heart food today...but I've just had a letter from my cardiologist that made my heart sink.

She talked about how the improvement in my heart function (EF remember?) was common in acute cases once drugs were administered.

Acute....that one fucking word sent me into a spiral of panic. I mean, I knew it was bad, I couldn't breathe properly when they took me into hospital and while stuck on the ward I could see my heart rate was the highest there by quite a way.

But being reminded of that by this one word...acute. Not just acute though. My symptoms were 'very acute'.

FUCKSHITBOLLOCKSARSEGRAVYBISCUITS!

The letter also confirms the waiting I have to do. She doesn't want to guess the 'degree of my dysfunction' yet.

I'll have my next scan in September. If I'm improving that's great. I just carry on. But if not...then I get a little machine put in my chest to make sure my heart doesn't just stop. But if it gets worse, then I go on the transplant list.

Today is a day where I just want to sob hysterically and scream at everything. This is not fair. This shit is just so-not-fair. I'm only 27, I do not want to die young. I have SO many things I want to do with my life before they take me underground kicking and screaming 'I DON'T WANT TO GO ON THE CART!!'



I hate having to wait for so long to know if I'm going to slowly get better. I hate worrying every single sodding time my chest twinges. I hate that I am constantly checking my pulse absent-mindedly. I hate that I feel like a fucking invalid. And I really hate that sometimes I give in to all this uncertainty and just break down.

The doc also talks about how I have a narrow complex QRS....no fucking idea what that is!

I wish in these letters they'd try and explain the terminology more. To make it less terrifying! But I trust my cardiologist, and I know there's fuck all I can do in the meantime.

So I just keep going, and I'll try to ignore this traitor in my chest who's let me down so very badly.

Time for an 80's fighting movie style montage.

YOU'RE THE BEST AROOOOUUUUND, NOTHING'S EVER GUNNA KEEP YOU DOWN!

I have been mostly working on mah fitness for the last couple of weeks, since the Cardiologist has told me I need to start walking a little bit each day.

So...I decided I'm going to start walking to the post box down the end of my road each day, and when I start getting better I'll walk to the next one - a bit further on and keep that up.

Since I'm going to the post box I'll be sending out loads of postcards, stickers, photos and stupid letters to people. So if you fancy one send me your address. I'm on twitter as @sarawezzie if you want to tweet me all your personal details (I take bank details too...or just an address.)

I'm improving bit by bit each day. Walking to that sodding box almost killed me on the first go. But a week later and I can do it without any chest pain or breathlessness. 

I've lost about a stone and a half since going into hospital in April. So I feel pretty good about that. My diet has completely changed since coming out too (out of hospital, not as a homosexual).

Next post is going to be a healthy heart diet one! I would do it today, but I can't be fucked. I'm tired after a full on morning, so I'm gunna go hang out with this furry face.

UGH!!!

This weekend was the first time I have been completely alone since leaving hospital. I thought I'd be OK. But I fell to pieces a little bit.

All I could think about is 'what happens if something goes wrong?' I'd be on my own and no one would be able to help me or find me.

It is fucking awful living with this kind of fear hanging over you. I can normally keep it in the back of my mind so it just niggles occasionally. But when you're stuck indoors with just a pair of insane cats for company...your brain goes into overdrive.

Seriously, look at this cat. He is insane. He yowled because I wouldn't let him sit on my face.

It is exhausting being this emotional. I feel like I'm coming to terms with what's happened to me, then I'll have a blip where my chest hurts or feels heavy and I'm dragged back down with an almighty bump. Then earlier today one stupid picture came up on facebook with facts about heart transplants.




I hate thinking about how this stupid heart could cut my life that much shorter and I really HATE being reminded of that too.

Knowing I have another three months to wait until I have an idea if I'm definitely improving just sucks, it sucks a big bag of hairy man balls!

There is also a huge amount of guilt that comes with this too. I feel like a huge burden on my partner and family, both emotionally and financially. Honestly I just want to go off and find a cave, curl up in my duvet, eat a huge bag of doritos and sleep until my body somehow fixes itself.

I hate the pity I get from people too. The way their heads tilt and ask 'so how're you doing?' In that irritating honey glazed tone. 'How the fuck do you think I'm doing? My heart isn't working properly and all I can think about is trying to not die!'

Thank fuck for my friends who keep me sane by making jokes at my expense.

Friend: 'You wanna watch Voyager?'
Me: 'No, Voyager fucking sucks.'
Friend: 'Pfffft, clearly your heart not working is affecting your brain ... you giant twat.'

I can rely on them to make me laugh. So thank you to every friend, family member and total strangers who have made me laugh or enquired how I'm doing (without the head tilt!) or came to visit, or called, wrote a letter, sent a pigeon, got naked and danced for me, let me watch Blue Brothers a thousand times, baked me stuff and so on.



I appreciate any and all the distractions. I'm going to go cheer the fuck up and try to make my next post less emo .... and deathy.