Sunday 09.03.2014 - Let me know what spring is like...

Another day of the most glorious spring weekend this year so far, and I can see it all from my window seat. One thing I will say; my view is amazing. I can see all of Wormwood Scrubs, and beyond to the Wembley Arch, lit up beautifully on game nights. I can almost see our house from here. I send a kiss that way every evening.
Rich and Kitten come to see me and we have lunch in the restaurant again. Kitten seems to have gotten completely used to seeing his Mum here, like it's the most normal and natural thing. I say goodbye to them outside the lifts and he says "Love you Mamma!" and "Bye bye, Mamma!" as the doors slide shut and I cry a little. The thought strike me as I go back to the ward, that with the weekend over and no visits from my Kitten the next day, in between the sadness and longing for my baby, there is also a small amount of relief. He has direct and instant access to the innermost part of my soul. Being with him makes me vulnerable. I don't think of him if I can help it. It makes me cry when I do.
I have a lot of feeling to catch up on, I need to be able to react to this... thing that has happened to me and my family, but there just isn't any room here. There is not enough space in me for the feeling of unfairness that has begun to stir, but after hearing and sharing everything from medical treatments to family dramas with the rest of the ward, I do not want to share this. I need to let this out and allow myself to be angry, but not here. So it's onwards with gritted teeth and manic grins and trying not to think of my baby.

Saturday 08.03.2014 - Out for lunch

The doctors won't let me out of the hospital, but has hesitantly agreed to let me out of the ward. I get to go for a meal at the ground floor restaurant with Rich and my baby, and I can't wait! I am beginning to feel slightly institutionalised. I have been relieved of any responsibility for my own life, The only decision I get to make is what menu option to order for dinner and even those options are becoming more limited as I work myself through the menu. My calorie intake is boosted by chocolate, so I'll live.
I take my iPad and a cup of coffee onto the patio and write a little in fresh air. I listen to music on Spotify, and suddenly a sad and beautiful song comes on, Brothel, by Norwegian singer Susanne Sundfør. It catches me completely by surprise, I cry uncontrollably.
There are dark little bubbles under the surface, and I have to watch it now so they don't come out. Music is a minefield, but sometimes I just let my mind wander a little and discover that I am crying. As if the tears have a mind of their own and are just waiting to burst out when I am not watching. I know I have to deal with this, but there isn't any room here.
My personal space bubble has shrunk until it feels like cling film on my skin. I am being shrink wrapped. What I really need is to scream in a public place. I guess this is the digital equivalent.
When was the last time I screamed anyway? Probably in the gym, in some hyped up routine during Zumba class. How come we can scream there and nowhere else? How did it become more acceptable to scream over a good cardio workout than to scream out of anger or fear?
Rich arrives with our little Kitten, and I drink him in. I try to stock up on his hugs and smiles and words and smell, we go to the restaurant and I eat canteen buffet food with great relish. When they leave I am exhausted and fall asleep for an hour in the middle of the afternoon. I wake up worried. I don't normally feel this tired do I? Or maybe I do, but the energy required to live in this place is so minuscule I don't notice it. Will I have enough to give my boy when I go home? Damned beta blockers.

Friday 07.03.2014 - Tick tock, it's weekend o'clock

The doctor is telling me it won't be today. I have to do an extra stress test to see if I am a candidate for the s-ICD, and they won't send for the device until that is done. Nothing happens on Saturday and Sunday, so I am here for another weekend. I tell Rich and for a moment his mask slips and I get a glimpse of how exhausted and anxious he is. His Dad has been with us for a week to help with little'un, but has to go home tomorrow. I think Rich feels alone. I know I do without him.
I have been keeping my chin up all this time, but with this latest knock I can feel the cracks are beginning to show. What I wouldn't give for a room with a door I could close right now. Four people all going through these dark moments of our lives with nothing but a thin curtain to separate us from the conversations of the family and friends of our neighbours. You overhear everything and get sucked into their lives as much as they get sucked into yours.
There is Mrs OldMamma, an elderly Italian woman who wallows in her misery and masterfully manipulate all of her relatives. She orders every meal with a side salad, wolves down the main course, keeps the salad on her table and when her children comes to visits she picks at it and laments that she can't eat a thing. She gets a lot of sympathy for declaring to nurses and fellow patients that it would have been her and her darling departed husbands anniversary today. Except it's the third one she's had since I got admitted.
Then we've got Mrs Posh St. Batty, exceptionally well bred and completely mad. She is a vigorous lady of 82, has had a very exciting life, travelled the world in her youth, fiercely independent and is that warm and funny blend of kind and judgemental that only old ladies can pull off without seeming anything other than charming. She makes the nurses roll their eyes and the doctors brace themselves as she launches into the last 25 years of her medical history every chance she gets, but really she is just terribly afraid of being sent home to pass out again. Or even worse; being sent home to sit and be afraid of passing out again. In her words: "oh darling, what I need is a vet, just put me down, just get a gun and shoot me."
In the corner there is Mrs NotQuiteLastLegs, a very frail old lady who is defying the odds and is slowly recovering. She lives alone and has a social worker visit her in place of her daughter who hasn't been seen here at all so far. The last time she felt good was years ago. The social worker had to break the news to her that her absent daughter had signed a Do Not Resuscitate order for her when she fell ill.
The walls here are dripping with emotions, the rooms are filled with people scared of death, the hallways are crowded with family members relieved and worried in equal measure.
I long to escape from everybody else's emotions and take some time to feel my own.
In a room with a door I can close.

Thursday 06.03.2014 - Pick a device, any device

A consultant comes to talk to me about the defibrillator device I'll have fitted. There is more than one type, so I need to choose. There is the one with wires inside my heart, and the one without wires inside my heart. I go for the one without. I think my heart should be left alone a little. It's called a subcutaneous Implantable Cardioverter Defibrillator (s-ICD). It will need an extra test, but I'm still hoping the surgery can happen before the weekend. I'll go crazy if I have to stay another weekend.

Wednesday 05.03.2014 - Research

Doesn't look like the ICD surgery will happen today, I spend the day researching. Have spent the data allowance on my iPhone many times over now. Google is a double edged sword, though, and especially Americans seem to think this disease means you'll need a heart transplant and never exercise again. I have to routinely remind myself of Kinds advice; "there is nothing you have been doing that you can't keep doing, albeit a little differently". I am determined to get back to running, but both Important and Kind tells me that for the first 6 weeks all training is off. After that I can work out within a safe heart rate zone that we determine at my first check-up. I've got to change my way of thinking about it. The big enemy here is competitiveness. I can go out and run 10 K, but I can not set out to do it. I can run for an hour and do a new PB, but it has to be without trying. In essence: I can no longer push myself, and I have to avoid situations where I might try and go beyond my limits. Setting a fixed target is bad, as I'll strive to reach it. Races are completely banned, so the BUPA 10 K in May is definitely off. It's all quite emotional, but I can feel myself bouncing back already. I do that quite quickly, to the point where Rich's biggest worry is that I won't take it seriously enough.
He doesn't have to worry.

Tuesday 04.03.2014 - Diagnosis

I've got no funny comments today. Two ladies come to see me, an important looking one and a kind looking one. Important tells me I have Arrhythmogenic right ventricular cardiomyopathy (ARVC). This is what has been causing my VT. The disease is progressive, there is no cure and I won't get better. I'll need to get a defibrillator (ICD) implanted and then monitor and manage the symptoms for the rest of my life. Hard exercise is a big No, it literally shakes my heart cells apart. Kind tells me what it will mean and gives me something to read. Rich arrives. I cry. I know it sounds funny, but even after a week being tested and monitored in a cardiac ward, I didn't really expect that there was anything wrong with me. Certainly not anything like this. My Sisters, mum and dad, and my little son will need to get tested, the disease is congenital. Have to call them all and tell them. I wish I could hug my little boy.

Monday 03.03.2014 - Bored

The feeling of complete inactivity ceases, it is Monday and the doctors are in. Still, I don't expect to hear anything new today, the MRI analysis will be completed and the result discussed by the various consultants at a meeting tomorrow. Things are happening in the background, though, so the waiting feels a little less pointless than over the weekend. The doc allows me to start taking the beta blockers at night instead of morning. I can be dizzy in my sleep instead. Am starting to get seriously stir-crazy. Rich has brought me various entertainment options, puzzle mags, knitting, movies, papers, but still find myself walking up and down the hallways a lot. Fast forwarding time in my head and imagining the nurses running around to the Benny Hill tune. When bored, imagination helps. Wifi would have helped more.

Sunday 02.03.2014 - Wireless!

Have worn down the nurses at last, they come in with a portable monitor unit so they can keep an eye on me remotely. I steal some bandages and a ziplock bag from a supply trolly in the hallway and make a little bag for it.
My look now comprises of fluffy slippers, pyjama bottoms, sports bra under a hospital gown with pink flowers that I tie up in the waist, wires sticking out everywhere to a monitor unit in a bandaged ziplock bag. I look like a suicide bomber who's overslept.
I totally rock hospital fashion.
With the portable, I am allowed out onto the ward patio, breathing fresh air for the first time since I got here. The list of things-I-haven't-appreciated-enough-before keeps growing.

Saturday 01.03.2014 - Movie night

The cannula in my right hand that's been in since Tuesday is finally coming out, hurrah!
Walking up and down the hall a bit, but the nurses have a new strategy where they claim to need to measure my blood pressure whenever they meet me. Play hide-and-seek.
The doctor hear tales of my excursions and take me off the blood thinner. The nurses are not amused.
They put me on beta blockers.
The doctor has found some abnormalities on the MRI scan. They'll need to look further before they can say anything for sure, but we are closer to a cause for the VT.
Rich comes to see me and has brought my little boy, haven't seen him since Tuesday and I set off all the monitor alarms.
Rich hands me a hard drive with some movies on before they leave.
I pull the curtains around my bed and play cinema.

Friday 28.02.2014 - Testing, testing... 1 2 3

I get to have a shower!!! Hallelujah! How did they survive in the Middle Ages?
Have started reading my journal that they foolishly keep in a pocket at the foot of the bed, googling whatever I don't understand. At morning rounds I ask the docs some questions, he seems to be quietly debating with himself whether or not I'll be a problem.
The doctor explains that the "idiopathic" part of the diagnosis just means "we have no clue why it happens". The rest of the fancy words are serious. If this happens again and I don't get help, it could kill me. That doesn't sound silly at all.
More tests are needed, so they ship me off to the ECG department to do a heart stress test, the ultrasound department to do an echocardiogram and then I do an MRI scan for an hour and a half.
Have to sit in a wheel chair and be pushed to and from each test, one of which involves me pelting it on a treadmill, but no one seems in a mood to see the irony. I fall asleep in the MRI machine. Club VT are all fixed, patched and discharged, they promise to think of me while having a pint. B@stards...
The nurses instantly detect the shift in power, feel safe in their majority and order me back to bed and wired up.

Thursday 27.02.2014 - Wired up

In an attempt to figure out why my heart went haywire, I am being sent to an electro physiological study and an angiogram.
Thin wires are inserted into my main blood vessels through the groin and taken up to the heart, guided by X-ray. These wires can administer shocks to my heart and they use it to find out how the heart deals with various electrical signals.
The whole thing happens under local anaesthetic, so I get to see the wires moving about on the X-ray screen as my heart is beating.
Unexpectedly did not freak out, but found it kind of cool.
They manage to re-produce the manic heart beat and it is diagnosed as a sustained idiopathic monomorphic ventricular tachycardia (VT).
The name makes me think it's something silly. Like an important sounding title given to a mundane job. I suffer from the heart related equivalent of "waste management and disposal technician". Hurts like hell, though...
The procedure leaves me a bit sore, so back on the ward, I unplug from the heart monitor and take a careful stroll down the hall. No one reacts, so from this point I am not too bothered about staying plugged in and I go exploring.
Run (or rather; hobble) into a bunch of gentlemen across the hall, who are all here with VT. We plug out collectively and go roaming the corridor. One of them is getting KFC smuggled in. The nurses look worried.

Wednesday 26.02.2014 - Strings attached

Drips are done, and I get rid of the oxygen line, blood pressure cuff and pulse gizmo, so the number of wires coming out of me is now reduced from 10 to 5 and I feel positively liberated. Pinocchio's "I've got no strings to hold me down" is playing through my mind as I am allowed to go to the bathroom by myself, something I'll never underestimate the significance of again. Still, whenever I am in bed, I have to stay plugged into a heart monitor that keeps tabs on my respiratory rate, oxygen saturation, heart rate and blood pressure. Rich arrives with earplugs, pj's and chocolate. I am doing well and am "stepped down" from CCU to a normal bed on the ward. This significantly reduces the risk of being kept awake through the night by a confused old man in the neighbour bed trying to tear out his own catheter. A clear plus.
With the earplugs in I am blissfully unaware of the beeps and bleeps of the heart monitors of me and the other 3 patients in the room.
I sleep amazingly well.

Tuesday 25.02.2014 - Blue lights and shocks

Admitted to hospital, so clearly a bit of a negative, but I consider it progress that they got my heart down from 230 bpm.
Collapsed at the nursery while picking up my boy, must have traumatised children, staff and parents alike.
Felt silly when they called the ambulance, but by the time they arrived I could barely say my own name. Was aware of my son crying in a corner and unable to go to him, so that was pretty sucky.
Had my top cut off in the ambulance in case they had to shock me, I realised then that this was serious. It's weird what detail will drive something home. Collapsing, seeing my heart rate at 230, being wheeled into an ambulance and driven off with blue lights and sirens, and I still felt vaguely embarrassed. As if I was wasting everyone's time. But a medic cutting my top open makes me think "oh my God, it's serious! That was a nice top!"
At A&E they try various drips and medication, but end up putting me under and delivering a shock to get my heart down from the rafters.
I wake up declaring I feel great, then vomit.
Rich is there, smiling and looking terrified.
I am wheeled up to the cardiac ward, A7, and told I'll be there for at least a couple of days. That's about as much info as they think I can deal with the first night, so I say good night to Rich and try to get some sleep. With a drip in either arm, my blood pressure measured every hour, oxygen lines up my nose, 5 wires stuck to patches on my chest and a gizmo measuring my pulse stuck to my right hand, movement is complicated, sleeping proves an impossibility. An alarm goes off every time my breathing slows.

The background

First of all, I should mention that I am not at all sure about this blog thing.
I've been toying with the idea for a while, mainly because I enjoy writing, but what has stopped me is always the same thought; is this blogging thing just an extended Facebook status? If you haven't got anything to say or a story to tell, why tell it?
Well, I might have something to say now, or at the very least; the therapeutic effect of writing now trumps any criticisms of exhibitionism I might expose myself to, so sod it.

Quick background, we won't dwell too long in this territory, it isn't all that important and my life has been an ordinary one.
Norwegian, 36 years of age, mother of a boy of two, happy in a relationship with the love of my life, Rich, he is English and the reason I find myself living in London. Before this, I lived for some years in Copenhagen. I left Norway for Denmark in 1998, but remain close to my family; three sisters, Mum and step-dad, Dad and step-mum, three brothers in law, 4 nephews, 2 nieces.

I work in IT for a large bank. I like cooking and gardening and sci-fi movies. I have a crush on David Tenant as The Doctor . I have played every Lego PS3 game made so far. I have a real, actual fear of zombies, a serious Christmas obsession and I like knitting.

And I am in hospital.
For nearly 2 weeks now, which is reason enough to turn to writing as relief from the boredom and a means to keep sane. But there is also the fact that last Tuesday they told me I have a congenital heart disease.
Bummer.