Thursday, 29 October 2015

It's World Stroke Day!

So it's World Stroke Day today and I wanted to write a blog post on the many aspects of stroke itself. World Stroke Day (i'll call it WSD) is a day to raise important awareness of stroke and to help prevent it further.
WSD was devised in 2006 and since then has highlighted the rates of stroke worldwide, has raised awareness and has called for better support for stroke survivors and carers.

Firstly, I'll share with you some key statistics about stroke:

Stroke occurs approximately 152,000 times a year in the UK; that is one every 3 minutes 27 seconds.

There are around 1.2 million stroke survivors in the UK.

Stroke is the fourth single largest cause of death in the UK and second in the world.

By the age of 75, 1 in 5 women and 1 in 6 men will have a stroke.  

Stroke kills twice as many women as breast cancer and more men than prostate and testicular cancer combined a year. 

Stroke is the largest cause of complex disability – half of all stroke survivors have a disability. 

For every cancer patient living in the UK, £241 is spent each year on medical research, compared with just £48 a year for every stroke patient. 

OK, let's start at the very beginning, what is a stroke exactly?
You'd be surprised at how many people still don't know exactly what a stroke is so don't understand the consequences fully.
Apart from being one of the most devastating illnesses to ever strike, it is known as a 'brain attack'. There are three different types of stroke; ischaemic, haemorrhagic and transcient ischaemic attack (or TIA).
Ischaemic happens when the blood supply is cut off to the brain. This 'cutting off' is caused by a blockage, so a clot.
Hemorrhagic happens when an artery in the brain bursts or breaks, causing a bleed.
And lastly, TIAs are caused by a blockage again, but it is only temporary. You will get the symptoms of a stroke so drooping face, weakness of limbs down one side etc but it will last 24 hours or less.

So, what can put you more at risk of having a stroke?
Well, there is different categories, if you like.
We have the lifestyle factors: obesity, smoking, drinking excessive amounts of alcohol and diet. Being overweight and not hitting the gym at least once a week is crazy to me. I sound like a fitness freak.
Before my stroke I hated it, seeing all the skinny, pretty girls running on the treadmill, sweat not dripping off them in a disgusting way. I get it. But now I honestly can't think of a time when I've hated going. On the one hand it's helping me stay fit, healthy and in control of my weight but then it's helping me get stronger and stronger after my stroke.

Then we have the medical factors: high blood pressure, diabetes, high cholesterol and atrial fibrillation. One that hardly is ever mentioned is hole in the heart. It is not a common factor, in fact you can live your life without ever knowing you have one. But when things go wrong, a hole in the heart is investigated immediately and is scrutinised as the likely cause of stroke. It is said around 25% of people have one.

There are factors that you can't change: your age (said to be more common after the age of 55 as our arteries naturally get narrower, but we all know well, SHOULD know that strokes happen at ANY age! 1 in 4 happen below the age of 65), your family history (if a grandparent has had a stroke then your risk increases too) and your genetics (so Sickle Cell Disease increases the risk and so does blood clotting disorders).

Then we have the risk factors for women: hormone replacement therapy (HRT), childbirth and the contraceptive pill.
Yes, these risks are low but at the end of the day, it's still a risk!
Things like these are 'hidden factors'- with HRT and pregnancy/childbirth, there is a imbalance of hormones and an increase in oestrogen levels can make your blood more likely to clot.
The contraceptive pill is even more 'hidden', women are prescribed it nearly all the time, no questions asked. I was one of them, I know. Over 80% of American women are taking it. It's less for the UK, around 20% of 16-49 year olds take it.
I know lots of women around my age that were taking the contraceptive pill at the exact time of their stroke.
If you take it now but do not really have to be on it, I say get rid of it. You may say 'well I've been on it for years and haven't had problems'. Just because nothing bad has happened to you and may never will, it doesn't mean that it isn't damaging your body.

Up to 80% of all strokes could be prevented. 

So, you're having a stroke, or symptoms like stroke but are unsure what to do?

F(ACIAL WEAKNESS): Has their face dropped on one side? Can they smile?
A(RM WEAKNESS): Can they raise both arms and keep them there?
S(PEECH PROBLEMS): Can they speak clearly? Can they understand you?
T(IME TO CALL 999): If you see ANY of these symptoms, you MUST call 999.

We all know that by getting to hospital sooner means that people suffering a stroke have a greater chance of being thrombolised and therefore have a greater chance of recovery. The likelihood of long-term and complex disability is reduced.
Remember, it's not just a 'funny turn'.  Even if symptoms pass, get checked! 1 in 12 people will suffer a stroke within a week of having a TIA.
So if you've read this or have learnt more about stroke from elsewhere, please do something to help stroke charities, such as The Stroke Association. You can donate, take part in a fundraising event or just do something silly to raise money!
Stroke is a major illness. Don't ignore it because you think 'oh it won't happen to me'- it can.

Tuesday, 27 October 2015

Don't tell me how hard it is

Throughout my recovery, after my initial prognosis, I received nothing but positivity. I've always believed in being positive myself and not once have been phased by negative comments.

Until the past weekend.
Those that already know, know how much it upset me.
I don't want to rant too much but someone, who I thought was a friend, completely undermined my recovery/my life.
For someone that also has a brain injury, he was sure laying into me about my own.
I won't say what he said but it was incredibly nasty and totally uncalled for. He added that I don't understand how much he struggles day to day, that he pities me. I've never been so hurt and to think, they were my friend.

And before that, yet another boy insulted me about my stroke. Apparently my stroke wasn't that bad and my recovery seemed too good, like it happened overnight. I was absolutely shocked. There were no words to explain how angry/upset I was.
He also said that girls weren't as good at stroke recovery, that they aren't as strong.
Thanks 'mate'.

So apparently brain injury is a competition, according to these guys.

But I'm telling you this because IT IS NOT, AT ALL. Everyone's stroke is different first of all, everyone has a different attitude, everyone will recover at their own rate.
DO NOT EVER compare yourself to anyone! Recovery is not a race, not a competition. Do your own thing and most importantly, BE PROUD!

Saturday, 24 October 2015

Losing your speech is a pain

So being locked-in meant that I completely lost my voice.

So how did I communicate, I hear you ask?
Well I went through many 'phases', shall we say; firstly I rolled my eyes up for yes and then down for no. Seriously it was awful. You're stuck inside your own mind, all these thoughts rushing around your head and you have absolutely no way of telling anyone. You can only answer to yes or no questions. I'm also a bit of perfectionist/have a bit of OCD so I always want things a certain way, well my way. So when I got a pain or ache in my neck from being in a crooked position, obviously I couldn't tell them or point to the problem so I just waited for them to move my neck. It was like trial and error. The nurses would work their way through a list of body parts until I rolled my eyes up for yes.

Second, I would squeeze people's hands, once I had regained a little movement in my right hand. And I really mean little. The 'squeeze' was encouraged but often failed through me getting fatigued, so my trusty eye rolling was my fall-back.
You know just after you've woken up and you feel like all your strength has just disappeared? Like, you can't squeeze your hand tightly for a while? That's what it was like.

Then I used an E-tran frame. (For those that don't know, I'm sorry I couldn't post a picture, it won't work!) :(
So it's a clear plastic frame with a hole in the middle. The person you are talking to raises the frame up so that their head is in the hole. The person talking then uses eye gaze to indicate on the frame what letter they want.
Yes, it was very tiring and an extremely long way of communicating, but hey, it had to be done.

Then after I moved hospital, to the rehabilitation unit in Northwick Park Hospital, my right hand gradually improved and I then learnt how to write again. I got through a good number of notepads! My writing was sometimes unintelligible but that's where my Litewriter came in; a device where I typed what I wanted to say and it then spoke what I'd written. It opened up a whole new world of communication for me, I could ask nurses what I wanted, if they wanted to move me I could say exactly how I wanted to be moved so 100% comfort was achieved. It was great. Obviously not as great as using your actual voice but good all the same.
I even had a proper conversation about the 'X Factor' with a fellow patients daughter one evening.

I remember trying to get my voice to come back every lunchtime. While my neighbour scoffed down her chicken nuggets, I would lay there forcing out my voice. I tensed my barely-there stomach muscles and pushed. But nothing. Not even a squeak.
So instead I circulated my tongue around my teeth and pulled all sorts of different faces to practice my facial expressions.

Rehabilitation of my voice was tiresome and involved a lot of weird tasks, such as blowing bubbles and saying 'Aaah!' at random times of the day. Speech therapy was always something that I looked forward to. My therapist, a young, happy and very bouncy lady, made me enjoy it more, her enthusiasm and constant jokes were something I missed on the weekends.
My voiced returned in January of 2013 (hurray!) much to everyone's surprise. My usual therapist had gone on holiday for the week so in her place, I had a fellow speech therapist who never failed to make me laugh. He would see me on the ward and ask me to say 'Aaah!' as loud as I could. He was probably one of the only people to really care for his patients and their wellbeing and his efforts to get patients to get the most out of their rehab was amazing.
I was simply saying 'Aaah' and then he asked me to try and shape my mouth into a word. It worked! Then he just asked, 'Try and say the days of the week..?' So I did.
My voice back then was extremely quiet and very poorly articulated but I still done it.

And then the real hard work started. I had 2 hours of speech therapy nearly everyday where we would focus on articulation exercises and projecting my voice.
I remember shouting 'I AM SPARTACUS!' over and over in one session. The stuff I used to do...

When I was discharged from hospital on the 4th July 2013, my voice was still fairly weak, in comparison to how it is now.
Since my discharge I have worked so hard on getting it even better; louder and better articulated. And by god, has it improved. Ok it's not 100% but its sooooo much better than when I could only really whisper sentences.
However good it is now, I still play it down. I can't seem to help it. Then when I met with Daisy yesterday she was like 'your voice is so good! It's fully understandable!!'. Oh well...

Another thing I've found that improves it is confidence. When meeting people for the first time it can be quieter (not really quiet but quieter). Then once I get talking then I'm fine, I'm comfortable with myself and in that persons company and my 'guard' comes down and I become the chattiest person.. ever.

For anyone else suffering with a voice problem after stroke, I just recommend constantly talking. Whether it can't be understood, just talk. That's the only real way it'll improve and your confidence will boost.
So talk.
Even if people tell you to shut up or you haven't quite got your voice back yet, just mouth words instead.


Sunday, 18 October 2015

It's all or nothing

My first 'wobble' or actually my first complete breakdown came after my first physiotherapy session. We had spent the hour working on my core muscle and head movement. I would sit on the plinth and practice holding my sitting balance. It was pants. I couldn't even manage a whole second. They wheeled a mirror in front of me and I stared at my limp, twisted body. My clothes hung off my skinny frame and my head crooked to the left. I'd never looked so unattractive in my life.
They hoisted me back into my bed and set my duvet over me.
And that's when it hit me.
Tears streamed down my face. For someone that couldn't speak, I sure as hell howled the gym down. My physios attempted to console me but I couldn't stop. I didn't want to be here. I couldn't do this.

I never really talk about my inspirations/heroes, regarding my recovery. My main motivation really was my family, in particular, my nan and granddad.

My nan passed away when I was four and my granddad when I was twelve. Before my nan's death in 1999, she had battled with breast cancer for 12/13 years. My granddad, who had a stroke when he was 60, pushed himself to the point of physical pain, to regain walking again.

After that awful physiotherapy session I thought of my nan and granddad, 'If they could push themselves and give a good fight, then why can't I?'
My dad joked that 'You're a Sinfield, we never give up! You've got Sinfield blood!' and he was right. Who was I to let down the Sinfield name? I had to do this. Stroke was not about to defeat me.

The next physiotherapy session I snapped out of that depressing mentality and got to work.

Thursday, 15 October 2015

All about me

So I just wanted to fill you all in about myself. People ask me what I was like before my stroke and I always reply 'I haven't changed'.
Which is true, I may have physical disabilities but my cognition/mind, whatever you want to call it, is exactly the same. And people don't seem to understand that. They see the disability and don't bother getting to know me... which is sad.

Here are some facts about me before my stroke:

1) I was a 17 year-old student, studying A Levels at my local sixth form school.
I studied Psychology, Biology, Chemistry and English. I don't know why I studied Chemistry to be quite honest, I was extremely awful at it and yes, I will admit that I got an E in the AS exam. My friend sat next to me and my boyfriend (of the time) was opposite so I thought that was a good reason to carry it on at A2. Ha.

2) I love animals so I chose a career in Veterinary Nursing.
I originally wanted to be a vet but my E in Chemistry was a sign that it wasn't for me. When I was 16, I spent 3 weeks of my summer working in local veterinary surgeries in my hometown, Leighton Buzzard. I would carry out small meanial tasks like make cups of tea or wash down the kennels but my highlight would always be cuddling the animals and watching the morning surgeries being done. Yes, they were gruesome and yes, I almost passed out on one occasion but nevertheless I watched on as a spleen, along with a pair of tights, were removed from a Dalmatian.

Now, as a result of my stroke/brain injury, I would love to go to university and study a degree in Neuropsychology. My absolute dream is to work with brain injury/stroke survivors; I will always want to 'give something back'.
Throughout all of this, I will be writing my 'autobiography' (makes me sound like I'm a celebrity) and keeping this blog up to date, as well as running fundraising events. My charity work will never end.

3) I used to do karate too.
Now when I say that, everyone has been shocked.
I started when I was 8, when I was in Year 4 at lower school and carried on till I was 13; I achieved a high grade, one away from being a black belt, so I'm pretty sure I can kick your a** if I really wanted to. I stopped because GCSEs were on the horizon and of course, I wanted to do well in them.

I do look back now and still wish I had tried to carry it on somehow. Oh well.

4) I had a lot of close friends.
Now I'm not boasting but I belonged to a big group of friends that I was fairly close to. Having a boyfriend also meant that I gained friendships with his group too.
However, long story short they all went to university and got on with their lives while I was lying in hospital, rehabilitating. It's sad... but I've found you guys :)

5) I was ginger.
I know, not exactly a fascinating fact but nonetheless a fact that again, a lot of people don't believe. Since starting Sixth Form I had wanted to dye my hair brown but never really had the guts to do. In hospital, as I was only lying down, it became all knotted beneath my head and was a pain for the nurses to wash. So I went to the hairdressers downstairs from my ward and had it cut short and dyed. The horror on one of the nurses faces was priceless. She likened me as being the daughter she never had and absolutely loved doing my hair in the mornings.

And here are some after my stroke:

1) My stroke was in my brainstem.
All strokes are devastating but having one in the brainstem is very deadly. It's also not very common to have a stroke in this area of the brain. The brainstem controls the heart rate, breathing, blood pressure and consciousness. Any interruption (such as a clot) means it can no longer function as before and can cause death. If saved however, the chance of recovery is very slim, breathing cannot be done without artful support.

2) I was locked-in.
As most of you know already, I was left with locked-in syndrome. I couldn't do anything but move my eyes. I relied upon a lovely communication method of rolling my eyes up for yes and down for no. Then I would use an 'E-Tran frame' so I would look at a frame of letters, point with my eyes which letter I wanted and go from there. Yes, it was incredibly laborious and mega frustrating if they spelt the word wrong that I was spelling out.

3) I was nil by mouth for 4 months.
Meaning I wasn't allowed food for 4 months after my stroke as I couldn't swallow. It was so painful. Watching the lady in the bed next to me scoff down her chicken nuggets every lunchtime was something I'll never forget. Watching my sister eat a packet of crisps right in front of me was heart-breaking (yes I am exaggerating here). My dad moaned at her for being so insensitive and that it would only make me hungry for something that I couldn't possibly eat.
I had an extremely attractive NG tube hanging out my nose to supply me with water, liquid food and medication. Then after 2 months of that, I had a tube implanted directly into my stomach (a PEG tube). After it was taken out, I was left with a tiny hole in my belly that has now scarred into a weird little mark. Nurses told me to convince people that it's actually a bullet wound...

4) My stroke was caused by a combination of having a hole in my heart and being on the contraceptive pill.
So basically, the contraceptive pill clots your blood more. A clot was made somewhere in my body that then passed up through the hole in my heart and clogged in my brainstem.
That is why young women are more at risk of stroke as the contraceptive pill is a 'hidden' risk.

Thankfully though, a year after my stroke, I had the hole closed. My chances of another stroke reduced significantly.

5) Music was and still is, the most important factor in recovery.
When I was lying in hospital a week after my stroke, the first song I heard on the radio was 'Anything Could Happen' by Ellie Goulding. From then on it has become one of the most significant tunes in my iPod playlist.
I firmly believe that by listening to that, anything can really happen.

Sunday, 11 October 2015

My stroke story

Imagine waking up, not being able to move a single muscle? Well that's what it was like on Septemmber 16th 2012. Earlier that morning, around 1am, I had woken with an almighty migraine. I attempted to drink some water but instead it just dribbled out of my mouth, I couldn't swallow at all. Panic set in and I tried walking to my parents bedroom next to mine. I stumbled and nearly collapsed, my legs didn't work anymore. My dad came in and asked what was wrong but my words jumbled inside my head and stuck at the back of my throat- nothing would come out.
My mum called an 'out of hours' doctor and he came and took my blood pressure and blood sugar- everything was fine but seeing my condition and ambulance was called and I was taken to A&E. By now I was incapable of walking and talking, not even my hand would move properly to write down that I wasn't drunk or had taken drugs that night.

A&E was awful. No one knew what was wrong with me. My parents watched helplessly as the mystery illness told hold of my body further. I slipped in and out of consciousness, my hearing becoming more muffled.
And then everything went white.

I woke in a strange little room. I tried scratching my face but my hand didn't move. Nothing moved. My breathing was shallow and my hearing sounded distant, and echoed, like I was underwater. I was suffocating in this shell of a body.
It was 5am.

Then I was taken to Addenbrooks' Hospital and there I received an MRI confirming the worst. I'd had a stroke. Not just any stroke. A huge brain stem stroke. I was lucky to even be alive.

I was now 'locked-in'; a condition where not a single muscle moves. My eyes rolled around in my head and my hearing was still muffled; what was happening?! This is unreal, it's a dream. Things like this don't happen to me. I'm not meant to be here.