Let's get physical.

Yeah! Enjoy that sexy gif.

Anyway, moving on...I've started my Heart Failure Cardiac Rehabilitation Programme. This is a fancy pants way of saying I'm doing a closely monitored exercise class in my local hospital.

It's a bit like that bit from the million dollar man opening. Covered in wires running on a treadmill...well....the reality was a tiny pulse monitor and me going very slowly on an exercise bike,  but I did shout out ' WE CAN REBUILD HER' at the top of my lungs while lifting the worlds smallest weights...no one understood that reference so I just looked insane.

The idea is it'll help me shift weight quicker and give me a bit more confidence to move around a bit more without the fear I'll suddenly collapse and die from my heart deciding to commit suicide.

I have done two so far, and I was the youngest person in the group by about a hundred years. After two weeks there was an incident that meant they have decided to move me to another slightly more intense group.

And now to the incident: the son of one of the other members of the group sat there taking photos of me during the class.

To say I was angry would be an understatement. But I calmly resolved the situation and the guy is now banned from the hospital and can now only eat through a straw (I jest...or do I?)

I felt so violated and ashamed. I was so nervous about doing this class, because I still get so tired very easily. On bad days just going down the stairs to get my breakfast wipes me out for the day! I want to feel confident about going out more and trying to return to doing more normal activities, just going to meet friends for dinner...ANYTHING!

And to have some asshole take pictures when I felt so vulnerable was just horrific! I have no idea still why he did it. He didn't seem to think there was anything wrong with it! Did he do it for titillation, because he was surprised there was someone so young and felt the need to document it? I have no idea...but I do know one thing.

That man is a twunt.

But I start the new class this Thursday. I'll update on what it's like...if I survive it.

Then this weekend I'm off to Leeds for Thought Bubble, it's an incredible comics convention set over a weekend, but they have loads of activities and talks going on during the week leading up to it too. We'll see how long I last on the floor, I'm going as press this year so I will actually get to walk around!

http://thoughtbubblefestival.com/

If you're there look out for the slightly angry looking-fat-red head moving around at a snails pace!

Oh shit...

Well...I had the results of my scan.

It wasn't what I wanted. My heart function has only gone up 3% in 4 months from 25% to 28%. 

I was bitterly disappointed, I was so so so hoping to be at 30% at least, I thought it would be more. 

Before I get a slew of 'but it is an improvement!' comments I'll explain a bit more about why I am disappointed.

At 30% function I am at a significantly reduced risk from 'sudden cardiac death' syndrome, and I have less chance of relapsing back into full blown heart failure again. Also, the scans aren't that accurate, so I could just have stayed the same.

It also means my heart is repairing itself much, much slower than we'd hoped, so I'm worried they may suggest I need and Internal Cardiac Defibrillator (ICD) and I do not want this....DO NOT WANT.

There isn't much more we can do, medication wise, to speed it along.This is because I'm already on the maximum dose for my Beta Blockers (they slow heart rate down), but we have upped the dose of my ACE Inhibitor (dilates arteries, blood vessels etc so heart doesn't have to work so hard) a bit more.

So I have another 4-6 months of just waiting. I wanted to be out of my holding pattern so I could feel confident about getting on with my life a bit more, but no...not happening.

So now you can see my disappointment.

I am going to make a bigger push with the weight loss, as bad habits have been creeping back in, mostly eating out too much (heh). SO I've talked with my good old GP about diet and have a solid eating plan to follow.

My heart nurse has also suggested we start up an exercise programme, now I feel a little more able bodied. This will take place in hospital so I can be monitored closely (in case I have a heart attack, fall over and die).

I wish I could say I feel more positive, but I don't, I just feel tired and so fed up. Without the support of my wonderful partner, family and friends I would just give up and hide under a duvet until the next cardiologist appointment in January.

To cheer myself up I'm going to have a Parks and Recreation marathon. Please enjoy this appropriately themed GIF of Ron Swanson dancing.

An Unhappy Truth

I haven’t written a blog post in a few weeks because I’ve just been trying to ignore everything.

I want to be normal.

I really want to be normal.

And I had started to convince myself I was getting back to normal. But I wasn’t.

I hadn’t really tried going out anywhere for days and had started to ignore my good eating plan, baking cakes and ordering in pizzas when I was tired or used the excuse that I had people over so it was fine to eat shit. Then I realised I’d stopped napping so much during the day. Win for me! Not so tired!

But it’s because I’d stopped doing anything.

This weekend I’d convinced myself I was fine and went to volunteer with my fellow W.I group to help backstage at a charity burlesque night.

I started feeling off within about 5 seconds of arriving at the venue. It was up a huge flight of stairs, so I was out of breath and sore by the time I entered the room. I then ended up lifting a bunch of heavy boxes to clean the space up after everyone disappeared apart from me just before we opened (an unfortunate timing of people grabbing food and getting ready).

Then during the night I was on my feet non-stop for a couple of hours helping to man the cloakroom. I sat on the floor because some twat decided to take my chair away.

Then it happened.

Someone told me I wasn’t getting involved enough and that my attitude was really negative.

This stemmed from me asking if someone else could take raffle tickets round because I needed a break.

Instead of explaining I was recovering from heart failure I just packed up my things, texted my boyfriend to come pick me up and left with tears streaming down my face.

She didn’t know my situation. But she could have assumed something was wrong instead of automatically labelling me as lazy. Short of it is, a total dickhead made me cry.

And when I got home I realised I’d spent the last few weeks hiding. I’d thrown myself into bits of work at home and also into sorting out my partners 30^th birthday celebrations. I did all this sat behind my laptop in my bedroom. I’ve barely even been downstairs!

I’d put everything on hold trying to convince myself I was ok and normal. Because if I don’t try to go out, I won’t be reminded of how limited I am physically. I can just avoid all people and I won’t have to explain myself to those who think I’m lazy or rude.

I also didn’t have to think about my scan results, or dwell on my medication or think about dying so much.

It’s been a slow realisation, but I’m glad I caught it. This is how I used to act when I suffered with my depression. I really don’t want to fall back into that, and if I keep going down this path I will.

I’m booking myself in to talk with a therapist about everything. I’m tired, I need help and I need to start clawing my life back.

I urge anyone going through a similar massive health issue/scare to do the same. Talk this shit through with someone.

You go from normality to being confronted with your own mortality in the most unsettling and visceral way. It is going to knock you for six.

So let it out. You’ll feel better…or maybe you won’t. But at least we can scream at someone about how fucking unfair it is, how scared we are and just vent every little frustration.

It’s hard, you can’t confide too much in family or friends…because it’s a pretty fucking heavy subject. And I don’t want to burden anyone with that.

I need to start trying to move forward again.

If my heart were a person I would punch it in the face.

Heart Failure sucks.

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!