So....it's been a while.

Hi all

Don't worry I didn't die!

I know it's been a while since I updated this blog. In the beginning I wanted to do it as a way to vent my frustrations and also keep friends and family updated on how I've been doing. But it got too hard. Every time I wrote about it all the worst case scenarios came up in my mind, took root and stayed there.

But I thought now it's been a year since I came out of hospital I should do an update or two before I sign off.

I had a scan in March and it's showed I've had a big jump in my heart function (Ejection Fraction) that's gone up from 28% to 43% (normal is 55% and above)

I hope it has jumped that much anyway...when the nurse told me my results this month she had to get them from my Cardiologist's secretary over the phone!

This was obviously great news! I'm now no longer suffering with severe/chronic heart failure it's just moderate heart failure, sounds much less terrifying and death-y, so YAY! *does Liz Lemon dance*

But it was followed up with being told that the left side of my heart still isn't working properly...and they have no idea why, if it will improve, etc.

I'm relieved of course. I now don't feel as scared my heart's going to give in at a moments notice and kill me. The problem is I haven't felt the jump in function yet. I'm still exhausted a lot of the time and chest pains are also a big problem.

I've started a cardiac focused exercise class once a week, where I am the youngest person there by 100 years, but thankfully not the shittest. This has helped my heart start to rebuild itself and given me more confidence to push myself a bit more in my day to day exercising. I've got an exercise bike at home and I do a bit each day too.

I've also started counselling so I can talk about everything that's happened and try to deal with my anger and fear in a more constructive way. The lady helping me is wonderful, she's compassionate, kind and very intuitive.

I'm hoping in a couple of months the exhaustion will start easing off so I can start some part time work! I really REALLY want to get back to work, the problem is I'm not ready to go back into theatre events/producing. It's far too time consuming and physically active for me. To be honest I may never be able to go back to it.

So now I'm faced with the dilemma of what I do next?!?

Seriously... WHAT THE FUCK DO I DO?!?!?

My answer goes back to my first love, writing. Don't laugh. Stop it. PEOLE MAKE MONEY DOING IT!

I already make a bit of money through the comics side of my work so I want to see if I can turn that into an actual proper job.

I love editing and am good at it, I'm not too bad at the writing side of comics either. I also enjoy writing articles/features and already make a bit of money from all of these already.

I just feel a bit clueless about the next step. Should I start my own website? Just pitch articles to the bigger press sites/mags? Take a class of some kind? Honestly I have no idea. 

I need to start wrapping my head around actually beginning to plan a life again. A real life without fear, where I can set myself goals and achievements. And also have money to buy shiny stuff.

Fuck. This is going to be hard isn't it?

My brain feels broken.

I am getting a tad frustrated.

I'm not seeing my cardiologist until January and I have no fucking idea what's going to happen next, in terms of my heart recovery.

I don't know if it'll just be a scan or an angiogram (they stick a tube up your leg into your heart, then dye is injected and x-ray's are taken of your heart to show up how your arteries are working and where any damage is) or if she'll want to think about putting a pacemaker in there.

It's been playing on my mind recently all this stuff. Especially after a guy close to my age, with my heart condition (Dilated Cardiomyopathy...y'know my big flappy heart) has just been told he needs to go on the transplant list for a new heart.

I know it's a totally different person and everybody heals differently but this still shit me up big time.

The worst thing with all this going on is the effect on my mental health. I feel like I'm half a person, I'm constantly berating myself for being broken and not being able to get on with my life and do all the boring normal things people take for granted.

I went to visit friends last weekend for a wonderful night out, but had to make sure I had somewhere else to stay as I knew I wouldn't be able to last for the whole evening. 

It makes me feel caged, frustrated and very, very dull. And I am fed up of it all.

I am also sick of having to constantly explain myself to people. Because I look perfectly normal on the outside most people assume I'm fine now. Or that I should be doing better. One conversation which I was told I should 'just try going out more and not stay in so much' made me want to commit mass genocide.

Do you not think I want to go out more? Do you think I like being stuck in my own home day after day with nothing but cats and twitter for company?! This is not a fucking life. Some days it is a living hell for me.

I was also told that I'd feel better once I had a proper job so I'd be a functioning member of society again. Wonderful.

A lot of people don't understand the condition I have and don't try to. My heart does not pump properly so I'm not getting enough oxygen pumped round and everything is happening much slower so my body gets tired. And I mean my whole body, right down to my toes.

When I'm tired I just go, I'm like the shit bunny in those cocking Duracell rabbit adverts. I physically slow down and my speech becomes slurred and sometimes difficult to understand. I can't concentrate on anything at all and it's pretty frightening for me and it has been for my friends.

However...

My cardiac exercise classes are making a difference to me, even if that difference is just a mental one, I feel like I can do a bit more. My stamina is up and so are my energy levels. I'm still fucking knackered all the time but I am a little better at pushing through it all.

The weight loss has kicked off again with all the extra exercise, which is wonderful. I get scared that if I did suddenly get worse and needed a new heart, they wouldn't give me one because I'm such a heffer. 

If you know someone who is having a bit of a shit time at the moment...give them a squidge. I know it helps me! I'll update y'all when I've seen my cardiologist next month.

Xxx

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