Nobody knows what its really like

I'm called an inspiration, I'm called strong- being honest, I love it. It makes me feel proud of what I've achieved.
But don't think that I'm always happy or have my shit together. Because I don't.

Nobody sees those days were I struggle to get out of bed because I have 'one of my migraines.' Dizziness takes over and it's a battle to even walk across my room without losing my balance completely and gaining yet another bruise next to all my others that I have collected.

Nobody sees those days where I'm too fatigued to even do anything. Fatigue is inevitable and is a constant in my life now. I have days where being in bed is my only option.

Nobody sees those days where my anxiety becomes too much for me to handle. One irritating thing and I can get completely overwhelmed.

Yes, stroke can do this to you. Nobody thinks it but the after-effects can be horrible. I have good and bad days, just like any other chronic condition. It's unpredictable. I can't help it.

Be patient with me.

Soup, soup and more soup...

Yes, the title of this blog post may seem weird but just roll with it...

So this time last Thursday I was in an operating theatre, getting my throat chopped and mutilated- yes I finally had my surgery that I was waiting for!
I was having a 'plastic surgery' procedure, known as a pharyngealoplasty (no idea how it's spelt but close enough!) but I guess while the surgeon was in there anyway, he decided to take out my tonsils too. So I had my operation for my speech/voice along with a tonsillectomy- oh joy.
I did wonder why I had been in the operating theatre for 4 hours...

Coming round from the general anaesthetic was not fun- straight away it felt like someone had just sliced into my throat with a knife (well technically they had..) and my jaw and all down my neck was excruciating- probably seeing as they'd had to wrench my jaw right open to get at my throat.

"Beth, my lovely, open your eyes, you ok my darling?"

Hang on, I recognise that voice...

"Beth, darling, wake up"

My eyelids peeled open slowly and my assumptions were confirmed; a lovely nurse who had looked after me all them years ago on the acute stroke ward was here, in recovery with me. She'd obviously moved jobs seeing as she was here but it was so nice to see a familiar face! I think at that point I burst into tears... which confused them all (oops).

The next hour went incredibly slow, I don't know if it was the fact that I just couldn't breathe. I gulped air through my mouth but there was so much 'gunk' on my chest that it was just clogging my airway. Call me dramatic but I thought I was going to die.. again. I couldn't get any air in, my oxygen levels were dropping, I started 'drifting' and my eyes wouldn't stay open anymore, I became increasingly hot and my limbs just felt so heavy, I couldn't move...

"Look at me Beth" I'm trying...

Oh. I can breathe! The nurse had shoved a nasal tube down my nostril to allow me to breathe and omg I instantly felt better (well apart from the fact my nostril was stinging from the sudden tube being poked down there). My eyes sprung open and my parents were both there, again, I burst into tears... I found that with general anaesthetic, like you'd be fine one minute then you'd suddenly have an emotional breakdown and start crying over the fact that your blanket fell on the floor.

I was moved onto a proper ward about half 6, M5 I think it was called. My parents followed me up but I was so woozy from the anaesthetic I just shut my eyes.

Throughout my short stay on M5 ward, I met three wonderful ladies in my room with me, lots of friendly nurses, a hot young male nurse (I know right) and a weird bloke that hung around outside my room asking if I smoked or not...

Yes, so my cuisine that I have to stay on for 3 weeks max. is puree/soft foods, hence the title of this blog post. I've eaten more yoghurts, soups and sweet potato mashes in just this one week than I would normally eat in about 3 months and I've got another 2 weeks to go...

Just a little update...

Guys, I'm back! I know it's been forever since I last posted and I apologise but now I'm back to posting on my blog again.

Right, where do I start...

So I took my A Level exams at the end of June. Yes they were spectacularly difficult but I got through them. Honestly it's really not fun spending all your free time shut away in your bedroom trying to panic-cram all this information into your head. The amount of posters and brightly coloured notes that seemed to cover my entire room, the number of times that I cried due to stress and the impending doom of exams.

I received an unconditional offer to study Psychology at the university of Hertfordshire so yes, I was 'technically' into university but hey, you still want to do well in your exams right?!

Well fast forward to the 17th August now which was results day..
I'll be honest with you all, I wasn't nervous. I can only put that done to the fact that I'd got my unconditional offer already.. and the fact that the university and UCAS had already text me to confirm my place on my degree course.
I went nearly the entire day not knowing; only until half 3 did my english teacher email me to tell me what I got. See I was originally due to go into hospital for an operation (more on that in a min) so I asked for them to be posted.. so obviously there was no point me going to my college to get them.. as they wouldn't be there anyway...
So yeah, my english teacher emailed me; I got BBC, the exact grades that I would've needed had I only had a conditional offer. So to say that I was happy was an understatement!!

Right ok so back to my operation.. well I'm due to have this operation to improve my speech basically (I won't go into too much detail because it's very confusing and to be honest, I'm not 100% sure myself!). I originally had a date of 10th August but that got cancelled and moved to 17th August.. which once again, was cancelled so... I'm no further forward in my mission to improve my speech. Devastated, annoyed, disappointed, then list goes on..

And today marks 4 weeks until I move in to my university accommodation, something I have become really excited about recently. Yes, I'm nervous to be living away from home of course but super excited to live with a bunch of people my own age. I've had to buy all my essentials like bedding, towels, kitchen stuff etc but it's only made me more excited to live away. Typing it now even gives me butterflies in my stomach, a mixture of excitement and nervousness...

I will be updating my blog more often now so keep an eye out, it'll follow my university journey and other struggles/highs that I experience.

I'm here still!

Hiya everyone!

I'm back (temporarily)!
I've just looked on my emails for this blog and I know a number of you have sent me emails asking where I am etc.
Well, I am here, I'm fine- you see, I'm studying A Levels at the moment and college is very hectic! It's so hard to keep up with everything right now but come end of June, I will be freeeeeee! And yes, I will be back to writing blog posts for you guys. Plus I'll have more to talk about as I'm hopefully going to be starting university in September, to study a Psychology degree.

So for now its farewell... but I'll be back end of June with a new blog post.

P.S Thank you so much to those people that have sent me emails about how inspiring and positive my blog is, you don't know how much your words make my day and it's very very kind of you.

Beth x

Suffocation

Suffocation.
Stuck in this shell. You feel like you've only got limited breaths left so you breathe slow to make it last. You watch your chest expand as the oxygen mask fills your lungs. Your body, motionless, stuck in the position the nurses put you in. No way to cuddle up under the covers, scrunch up your legs into a tight ball and sleep. Just stuck there, like your lying in a coffin.
Your face itches but you lay there, incapable of lifting your hand or any fingers to relieve you of the niggling pain. You can't even comprehend what is going on, you don't know why your body won't work, you don't know what's going to happen next.
Overwhelmed.
Tears flood your eyes, stinging, they then spill down your cheeks and make they're way down your neck and absorb into the cotton gown your now forced to wear.
Trapped.
My parents sit there, exhausted. I want to talk to them. I want to tell them I'll be ok. I want to reassure them. I probably won't be ok but I need to say that I will, they need that little bit of comfort. I can't even turn my head.

Freedom

Freedom by definition is: the power or right to think, speak or act as one wants. The state of not being imprisoned or enslaved.
To sum up it's bloody fantastic!
I love being able to get up, get ready and go out on my own. I walk along the pathway to my car, get in and then I'm off. Gone are the days when I would have to wait for my mum to finish work and come shopping with me. I am free to do what I want, WHEN I want.
My little car Penny, (I'm probably the biggest Big Bang Theory fan so it's named after Penny in the programme and it's a girl car because it's all pretty and blue) plays a huge part, since learning to drive my independence has expanded. I love just getting up in the morning and driving to college like it's nothing major. It's just what I do.

On friday I kinda got a little emotional driving on my way to physiotherapy. I just felt so in control saying bye to both my parents, getting in my car and driving all the way to Markyate (a journey quite long and one I never thought my parents would let me do on my own!!). I was 'driving' on cloud nine- I felt extremely lucky to have recovered well from a brainstem stroke, firstly. But also the fact that I stuck with learning to drive, passed first time and managed to get a car of my own. Yes, 'normal' people do it all the time but for a stroke survivor who was told she'd never walk or talk again, is pretty big!

Also, physically I'm more confident. Although when I'm shopping, I have a trolley to hold onto but so? I'm walking by myself. I walk all round the huge supermarket, I even go upstairs if I need to. I don't get fatigued as much now, my leg muscles are big enough to carry me round the shop without me having to stop to 'catch my breath'.
And as we probably all know, trolleys have a mind of their own, there always seems to be one with a wobbly wheel... but I'm testing my balance and coordination- so technically it's part of this whole rehabilitation process.

And for anyone that wants to go out on their own but is a little nervous or worried...

- They will help you.
If, like me, you have a weak arm and cannot pack your shopping, they will pack for you. The first time I went to a till and paid I imagined myself having to struggle with it all. But no. All the cashiers that I've been to will do it for you. And they're happy to help out.

- Walk around like you belong.
You have just as much right as anyone else to be shopping in that supermarket. People will look at you and they may step out of your way quicker than anyone else because they assume you can't push a trolley, but it's to be expected really. Just get on with your shopping, don't focus on anyone, do your thing.

Independence, freedom. It's a huge thing. After nearly 4 years I can finally do things on my own again. So it does take time. But believe me, there is nothing greater than when you can finally take that little step on your own. Remember, what may seem small to others, is a HUGE accomplishment for you. Let no-one dull your shine.

Locked-in at 17

So what are my 'tips', if you like, about overcoming brainstem stroke/locked-in syndrome at 17? Well, I don't really have an explicit ones but I did have certain 'motivations'. First let me walk you through my immediate thoughts then I'll give you some tips that helped me.

1) 'I'm 17. I can't be stuck locked-in like this.'

I'm young. I'm meant to be doing 'young things', not sat on a stroke ward with lots of 60 year-olds. I should be preparing to go to university like all my friends. 

2) 'My family have to go to work, they can't become my full-time carers.'

Family was a huge motivation for me. I didn't want their lives to change as much as mine. I wanted them to stay 'normal', so go to work etc as they always have done. Plus I didn't want them to suffer financially and also health-wise in order to wait on me hand and foot. 

3) 'I want my dignity back.'

At 17 you don't want someone suddenly having to wash you, wipe your bottom for you or wipe up your dribbling mouth. I was going to shower myself again one way or another. I had no dignity, my body had become a view for nearly everyone, including my mum and sister. Not cool.

4) 'People won't be friends with me if I look like this.'

This one may seem harsh to you-you could even go as far as saying that I sort of bullied myself into getting better by thinking this one.

But it is true to an extent.

People only talked 'at' me as I couldn't converse back. Topics of conversation had to be established early, I had laminated cue cards to help. But I wanted to be able to talk freely about anything that I wanted. I would miss those little gossip sessions I used to have with friends. I would no longer be an active part of conversation, rather an observer.

Even now I find it very hard to make new friends because I look a certain way. You can see it ticking along in people's heads. First, they stare. They look you up and down. Secondly, when they see that you've noticed them staring, they give you the 'pity smile'- a small smile with a look of sorry in their eyes. I'm so used to it now that I don't take offence. In some ways it's actually quite amusing.

Also my speech is another factor. As soon as I open my mouth everything changes.

When my right index finger had come back, it was game on. I texted with it, I began to open post that my mum brought in, with it. And then my thumb returned. Then my other fingers. Then my arm. 

My right toes started moving then. My knee could bend a little. After much practice and keeping it moving it all returned. It was like my brain had suddenly sent one giant signal down my right side and unlocked it all.

Next was my left side. It took a little longer but it still returned, just not as perfect as my right.

So my tips for anyone suffering from recent locked-in syndrome or loved ones that are:

1) DO NOT stop.

Once you get a little movement back, even if it's just a twitch or only one finger, MOVE IT. The key to unlocking something is to always keep it moving. Make up an exercise to keep it working if you have to. I texted my friends back to make use of my right finger.

2) NEVER 'ACCEPT'.

When my parents were told I'd never walk or talk again, I didn't listen. 1 and a 1/2 months after that little prediction, I took my first steps. YOU shouldn't ever doubt yourself or accept a generalisation. That is not YOU. YOU know your own body better than anyone.

3) PUSH YOURSELF.

So your physiotherapist said to do 10 repetitions of that exercise. What about if you did 15? Or 20? Go just a bit more or go until fatigue hits. YOU can do it. You've done it for 10 reps already so go for 5 more.

4) LISTEN TO YOUR 'INNER VOICE'.

YOU are the only person that you should listen to. YOU are the only person that can pass judgement, motivate or criticise.

Ask yourself, do you want your body back? 

(The answer should be yes!!!)

Who'd have thought..?

'Mr Sinfield, Bethany will not walk again. She probably will not talk and will always be fed via a feeding tube in her stomach.'

My dad even had to double check this prognosis with my speech therapist, 'will she really never be able to talk or eat again?'
'It's extremely unlikely. I'm sorry.'

I sometimes don't realise just how far I've come since September 2012 when that initial prognosis was made. Looking back it both scares and amazes me. To tell the truth, it scares me to think that I had that said about me, that I could have just stayed completely powerless, totally paralysed with only my eyes to communicate. Not knowing then how different my life would be if I'd remained locked-in.
It amazes me, of course it does. Firstly I survived. To put it bluntly, it was thought I would die that night in A&E. Secondly I pushed through, what I can only describe, as the most devastating, toughest, emotional experience in my life. Something I never thought I would have to go through, let alone go through at the tender age of 17.
And thirdly, I can walk. I can talk. I can eat normal food.

Two years after my stroke I decided to get my first tattoo. I had recently turned 18 and had always wanted to get one. So I got a quote on my upper back, 'Strength grows from weakness'. My dad comments that is very poignant. That quote made me realise that it's ok to be weak. The only way to become strong is by being weak.

Then I got a little butterfly. I had it in black as a symbol of the dark times that I've been in but also, the wings and the simple fact that they fly, symbolises my freedom. Freedom from locked-in syndrome, freedom from 10 months in hospital. Freedom from the darker times.

I'm planning my next one as I type; a hummingbird. Again the wings symbolise my freedom. The beauty of a hummingbird symbolises the person I am now beginning to transform into. As I've previously written, this year my confidence is coming back to me, my old friend finally returning. To me, that is beautiful. That is what I've since desired the most.

Everything's changing

I always thought that 2016 would somehow be a better year than the past three. I don't want to jinx it though but so far, it's been pretty great.
My confidence has definitely grown (even my teachers at college have noticed a big improvement), my walking has gotten faster and the quality even better. Never would I have imagined I could say that 3 and a half years after my stroke.
And finally, after years of waiting, I got an answer about my speech. For 3 months I am going to try a palatal lift again (for the third time- fingers crossed!). For those that don't know, it's a prosthetic that fits along the roof of your mouth that extends all the way back to the soft palate to lift it up. The aim of this is to stop my nasality, so the air escaping from my nose. I've already tried one twice and both times ended badly- basically it just didn't work and created way more problems for me. The cleft team at Addenbrooke's know my reservations about it and are very aware that it may not work out again. So if not, they will operate.

Speaking of confidence, yesterday I went along with my neurophysiotherapist to her home visits of brain-injured patients.
To be honest, I was really nervous. Although I've met loads of new people over the past 3 and a half years and have had to talk with my 'new voice', I still get a little worried about how they'll respond.

I visited four incredibly lovely people and after the initial 'hello', settled in absolutely fine. Confidence boost number one.
I sat in their living rooms with their parents or wives and answered their questions they had about my stroke, my recovery and the knowledge I had gained about my experience. They loved meeting someone like me, having someone that truly knows what it's like and that's experienced exactly what they've experienced too and also knowing that it can/will get better.
Confidence boost number two.
Honestly, I felt so upset for one patient- she had met NOONE else that had had a stroke, let alone a brainstem stroke. She was incredibly isolated, never left the house. (WE NEED MORE AWARENESS!)
Her mum told me that meeting me and hearing my stories of recovery had given her and her daughter hope and kept commenting over and over how I had done so incredibly well.
Confidence boost number three.
What happened next will forever make me cry happy tears! I was walking out of the house when her mum shrieked with delight, 'Look, she's a walking miracle!'
Confidence boost number four.

Knowing that I can inspire people, give them hope and support through their recovery is something I truly and utterly love. It makes me cry (happy tears!) knowing that I can give people something to work towards and I can encourage them to achieve.

If I could meet every single stroke survivor across the world, I would! I love talking to people that know. Simple.
That's why I'd love to be a neuropsychologist or work with those who have a brain injury.

Happy days!

I hope the new year works out for you as well as it has for me so far, you all deserve it ;)

Happy Belated New Year!

'It does not matter how slowly you go as long as you do not stop.'

So it's 2016 now. A new year has begun.
What resolutions have we all made, if any? I suppose there's the usual ones; go to the gym more, eat healthily or lose weight.
I decided this year I'm just going to set one 'goal' for myself. And that is to be happy. I've started exercising a lot more and I've gone completely healthy now (well I do have the odd takeaway now and then). My confidence at college has increased, I've set my mind into 'achieving' mode so I'm determined now to do well academically.
Stroke recovery-wise, this year (9th February) I will undergo a full investigation on my speech and soft palate to determine what exactly is wrong and from there, get options on how I can improve my talking. At the moment, my only problem with my speech is the nasality. The articulation is no longer a problem to me anymore. I know that there is an option of surgery to correct the nasality which I would improve volume and clarity as well- this would obviously be permanent and would have a typical success rate of 80-90% (so I would be near 'normal' again).
If I had this done, I think life would be so much easier. My speech still holds me back in most things, not as much, but the worry of it letting me down, is at the back of my mind always. It's just one barrier I haven't quite got over and one that I never really will if I do not have this surgery.
I know you're thinking, 'you just need to exercise it!' No. My soft palate, since my stroke nearly 4 years ago, has been paralysed ever since. I've exercised it everyday since and it hasn't even twitched. Even if it moved like, 1mm, I would still need the surgery as it still isn't working to it's full.

Anyway, having near-normal speech would 100% give me back my confidence. It's something I have forever longed for since September 2012. Something that I never thought would ever make it's way back to me.

I know I cannot walk properly still, I still require support at times (linking someones arm) and my left arm still isn't usable but I'm at a stage where I can say that I'm comfortable with myself. With reference to the quote I used at the start of this post, it's been (well coming up to) 4 years since the horrific night in September 2012 and progress started off great, but has slowed and ok, I'm not where I want to be but fine. That does not mean I'm am going to stop exercising and trying my hardest, oh no. Even if it takes me another 4 years to get walking how I want, then so be it. I'm working on myself, for myself. Not anyone else. It's about me.

If you haven't thought of a resolution yet for this year, set a goal. Just be happy and only do what YOU want. No-one else. YOU are the stroke survivor. YOU will make it happen, however long it takes. YOU are important.

A stroke survivor's Christmas

Don't get me wrong, I love Christmas but I hate now how the countdown seems to begin earlier and earlier every year; even before Halloween you see Christmas adverts on TV.
I know that I probably sound like a right Scrooge but seriously, sometimes all the fancy lights and special gifts isn't what it's all about.

Back in 2012 I wasn't allowed home, my first (and last hopefully!) Christmas spent in hospital. And to tell you the truth, it was rubbish. The nurses can only do so much; the unit was decorated all festive and on Christmas morning, they even played Christmas music for us but.. there was no escaping the rigid daily routine; breakfast at 8am then shower time at 8:30 and out in my wheelchair for the day ahead. No waking up and coming downstairs in pyjamas and sitting on the floor opening the pile of presents before me. Not being able to see the look on my parents' faces when they unwrapped their present I had thought so carefully about. No turkey dinner. No crackers with bad, cringey jokes inside. No tradition. Nothing was the same.

My family arrived at 10 that morning, bag full of presents for me.
'Happy Christmas Bet!' Oh no, here come the tears...
Before I could attempt to reply, I burst into a crying, snotty mess. They're attempt at being merry only made me realise that they're were trying to cover up the fact that I was in here. And the fact that I had experienced, what can only be described as, the worst thing to ever happen to me.
Mind you, I had been dressed in the right attire for the occasion:

After 10 minutes of sobbing, I quickly cheered up and set my mind on trying to open the huge pile of presents on my bed, with one hand.
I had just been upgraded to a soft diet only, so in a flask my parents had brought some baby carrots, roast chicken and some gravy (suitably thickened for my still-impaired swallow). Even that small bit of lunch was glorious; way better than what had been served to me from the hospital!
After watching Christmas movies on the TV for the rest of the afternoon, my family left at 9pm. Nurses came and said goodnight but apart from that the unit fell silent. I lay in bed exhausted and fell asleep to the memory of my day.

So you see, I don't feel that Christmas is all about the fancy gifts. As long as you have your health and most importantly, your family, nothing else really matters. I know that sounds cliche but really, that's all I wished I had back in 2012.
New Year was the same; instead of watching the firework display with my parents, I was now tucked up in bed at 8pm feeling sorry for myself.
I had to come to terms with a new, very different version of myself. I was entering 2013 completely different to how I'd imagined; I still wasn't able to walk properly, use my left hand, talk or eat that well. The future scared me and I didn't know what it would have in store...


This will be my last blog post of this year so I'm going to combine this post with new year's as well.
2015 has been a better year than the last three but has still been a mixture of highs and lows. I think I've gotten used to the idea that now, my life will not ever be plain-sailing as I'd want but that's okay. I'm on a journey and I still haven't reached my destination yet. I'm bound to come across some stumbling blocks.
But here's why my 2015 wasn't so bad after all:

 I got my first car...

And passed my test.. first time!

I started college...

 I won a YOPEY award...

 And formed this blog as a result!

 Then received another award..!

If you think your year hasn't gone so well, take some time and look back on what has; there's something I'm sure.

To all my followers/readers of this blog, have a wonderful Christmas and I wish you all the very best for what you want to achieve in the year ahead :) Remember, us stroke survivors are all on a journey, it may be hard at times but you can do it for sure, don't give up until you're where you want to be.

I'll see you all in 2016! :)

You can't turn back time

What's happened has happened, you can't turn back time, no matter how hard you wish.

All the while, laying in bed on the Acute Stroke Ward at Addenbrooks' Hospital, just thinking 'Why me?' I stared at all the pictures of my friends and family on the wall in front of me, constantly crying and just wishing I could go back to the fun-loving 17 year-old that I was. Back to normality.
Just seeing my name on medical documents sent me into a frenzy, 'my name isn't meant to be there..?' This just doesn't happen to anyone in my family. This doesn't happen to me. Up until now I had never been in hospital for anything. Never broken a bone, never suffered anything so serious.

I was the only 17 year-old on that ward. Not that I could move about or speak to anyone, I couldn't make friends with people anyway because our ages were so different. That was another reason for moving me to the Regional Rehab Unit in Northwick Park, at least there I would be with people of similar age, they said. I remember meeting 2 or 3 young people on that ward, stories all so tragic and heartbreaking but so inspiring to see how despite, what had happened, they remained so cheerful.

I accepted very early on that I'd had a stroke. Although I find it hard to comprehend sometimes that something so severe happened to me, never do I wish that it had never happened. I'm not saying that I'm thankful for it, no way, that's crazy! But basically it has set me on a path; I now know what I want in life. Apart from the typical things like love, good friends etc I now know what I want to do; help other brain injured people. Helping those who are going through what I've been through would honestly be the most rewarding thing. Knowing that I'm helping them go through what will be the hardest time of their lives would be invaluable to me.
Getting messages now from fellow stroke survivors is just the loveliest thing; I can't quite explain how amazing it is to know that I'm inspiring others. I always get so emotional too, I think to myself 'are they really on about me?'

My life took an unexpected turn and the past 3 (coming up to 4) years have been crazy, to say the least. I've experienced both highs and lows that I'll admit, have been hard to handle at times. I have days where I get overwhelmed with the things that I now have to deal with, I can spend all day curled up in my room feeling crappy. Not once though do I ever blame the stroke itself, I honestly cannot.
But 9 times out of 10 I'm very happy and cheerful! :)
I have met some truly incredible people along my journey and you have all made my recovery so much easier.
My neurophysiotherapist, Haley Mersh, MUST get a mention. You are amazing; since coming to you, I have improved continuously, despite being told my recovery would stop. You always surprise me with what techniques you've come up with to help my rehab, every session is different. You are only ever a WhatsApp message away and I love how I always message you when I notice even the slightest of improvements in myself and you will always message back with multiple emoji's to show your delight!
I always look forward to sessions with you because I know we'll have a good old laugh!

Bev Creagh, my friend for life. Not only have you followed my story for nearly 2 years but have always been there for me; all I have to do is send you a quick email. You've taken me where I've wanted to go if my parents haven't been able to and you've highlighted possibly every aspect of my story/recovery in the newspaper, helping me raise awareness.
And of course, you nominated me for the Young Person Of The Year award this year.

Kate Allatt, I've only met you once in person but you have inspired me from the very day I found out about your charity 2 years ago.
When I met you, I felt an underlying connection, I think both our stories are just so similar. I don't think I've ever cried so much as when I read your book!
What you've achieved since your stroke and what you continue to achieve inspires me so much; one day I hope to write a book and give speeches around the country about my story too. I am in awe of you!

Daisy Hythe-Clayton, you are an absolute star! Every time I see you, it's always so lovely and we have such a laugh! You've enabled me to share my story in the media many times, which I am so thankful for. You helped me with ideas for this blog; it was a great 2 hours spent in the pub!

Lizzie Ashmore, Angharad Lloyd-Thomas & Lauren Bradfield, you have all been invaluable! After my stroke I felt like the only young person to experience this, I felt so isolated. But meeting you guys has enabled me to feel normal again, messaging you lot and sharing my story or just talking to you about 'normal' stuff, has made me feel like the young girl that I am. Thank you!

Vicky Pickford, Dora Asalon, Krishna Pindolia, it's an absolute pleasure talking to you guys. Vicky, you always give me such great support in anything I do, we share knowledge and understanding and I know I can message you when I have an issue I want help with! I will definitely come up and see you & Paul in 2016!
Dora, it's so nice to just have someone to talk to, especially going through hard times. I so hope we can meet before Christmas :)
Krishna, you always give such positive feedback on my blogs! Your story inspires me, even 10 years on, you're still achieving great things! It's amazing to see where you was after your stroke, to now; it's definitely giving me hope.

I haven't forgotten people; everyone I've met on Facebook, stroke survivors or not, thank you!
Receiving messages from you lot means so much to me, I don't know how many times people I don't personally know have contacted me but it's means the world to know that I'm reaching out to you in someway or another.

I love you all!
:) :)

You can do a lot with one hand

Yes, at first only having one good arm was a bit hard to adjust to. Up until the 16th September 2012, I could do anything I wanted; plait my own hair, paint my nails, pick up my dog...
And then at 1am that morning, that ability went. I had neither arm, both were paralysed.

It's pretty devastating to suddenly have to rely upon someone else to do such basic tasks for me. I was 17 years old, I was meant to becoming independent, not regressing to a baby-like stage where everything was done for me. It's knowing that you physically can't do that anymore that hurts the most.
Nurses would brush my teeth for me, shower me, dress me, even shave my legs for me. My mum became my own personal assistant; she always kept my nails painted and she even used to squeeze my spots for me. That's love, right there.
My prognosis was that I'd maybe end up applying only moisturiser on my face with my right arm and help from someone else.
Not the independence I was hoping for. I was crushed.

Thankfully though, my right arm returned to full function after 2 months. But the help didn't stop there. Having just one useable arm can present so many problems too: what about doing my bra up? How do I tie my shoelaces?
Luckily I learnt from my occupational therapist how to do this, and final little tasks. I was all set for home.

*To put your bra on: do it up first then put it on like a t-shirt
*To tie your shoelaces: wear shoes that don't have any!

I can't tell you everything that I do day-to-day with one hand; I just do it, it's natural to me. Ok my left arm doesn't work how I want it to but it's still attached to my body, I still use it. It's how I hold my bread down to butter it, it's how I untangle my earphones, carry clothes to the bathroom or wash my right arm...
There is so much you can do with one hand/arm; I actually challenge you (if you want to try it) to use only one hand/arm for the whole day. I'll be honest, everything will take longer and you'll probably just end up using both arms anyway to save time, but just think about those people that can't, they have to do it the long way, always.

Top tip: If you really can't do something, hold things with your knees or teeth, trust me it's a total life saver.

My left arm may never come back 100%, my brain may never reconnect fully but I'm trying all I can, everyday I try to do at least one thing with my hand/arm. It's hard on somedays, college takes up a lot of my time now so it's hard to fit in time for therapy.
I shouldn't look on to the fact that it may never move the way I want again but hey, if it doesn't it's not the end of the world. Remember, there's a lot you can do with only one hand.

Insecure

I don't know about any of you lot that have had strokes but it took pretty much all of my confidence. I hated myself and who I'd become. I was anxious and emotional over any little thing; my mind was in limbo, my emotions all mixed up. I just seemed to cry all the time. I was scared of doing the simplest of things because I feared rejection and embarrassment. I hated going out in public; straight out of getting out the car, all eyes would be on me and I would trudge, head down, into a shop. I became isolated too; my friends had all gone to university and it was incredibly hard to make new ones.
And, don't get me started on looks; my face had some residual drooping (and no amount of makeup would hide a drooping eyebrow), my left arm hung awkwardly out of my shoulder socket (called subluxation) and after 4 whole months of not eating anything, when I was allowed to eat again, I wanted all food. McDonald's, Chinese takeaway, vast amounts of chocolate. Jam doughnuts were my favourite treat. Before I knew it I had become a lot heavier in weight.
Before my stroke I was underweight-ish then I lost nearly 10kg... then I piled it back on. And more.
I hated it.
And I had little way of exercising; I was confined to my wheelchair most of the time and very weak.
I went from being a skinny minny:

To some crazy burger-loving woman:

It was hard to find clothes to flatter my dodgy, subluxed shoulder and my now-bigger frame. Leggings hugged my legs in all the wrong places and big baggy jumpers made me look frumpy, even though they hid my belly well. It was a nightmare. It really got me down, weight is a sensitive issue at any age and for anyone but especially to a 17 year-old girl.
My metabolism had slowed right down; whatever I ate seemed to go straight to my hips, despite efforts to cut down.
Before I left hospital, the dietician on my rehab unit put me on a strict diet and made me keep a food diary. That was around the same time when I went home at weekends so I often lied about what I really ate when I was there.. Shh..
When the time came each week to be weighed, I stepped onto the scales with baited breath, hoping some weight had miraculously been lost. No such luck. Albeit smaller increments, my weight continued to mount up. The dietician seemed out of options really. I felt disgusting.

Then I was discharged and things began to change. I got rid of all my junk food. I bought an exercise bike too. My weight stabilised finally and began to drop.
Then 8 months later (once my GP had FINALLY cleared me to enrol at the gym) I lost weight faster (and I even built some muscles too!) and everything seemed to come together. I finally could wear nicer, fitted tops and tight jeans, clothes that I didn't mind hugging my new-found figure.

Before my stroke, I'd suffered with terrible acne (as you can probably see in the picture). I'd been prescribed the contraceptive pill for this.. but it didn't work. Instead it clotted my blood and caused a stroke. Fab.
The long time spent not wearing makeup and having good, nutritious supplements pumped straight into my stomach, cleared it right up, not a spot in sight. Finally my skin looked healthy.

Along with my weight loss, my clear skin and the fact that the residual drooping of the left side of my face had evened up, my confidence has soared right up.
My left shoulder still isn't completely normal, it still hangs a bit dodgy out of the socket but it's something that doesn't particularly bother me anymore. There are some things way more important in life than a weird-looking shoulder guys.
I don't have a 'before' photo but here's a photo of me 'after'- I love a good selfie.

You may have noticed my change in hair colour too; when I was very, very young it was white blonde in fact. Then it got darker and ended up a ginger/strawberry blonde colour. After I came out of hospital I just wanted to get rid of it, I just wanted to try and become a new individual, have a different identity. I didn't want to associate myself with the person I was before my stroke. This was me now.

Anyway, if like me you've suffered a stroke and suddenly found yourself in a pickle with your weight, I would say to you, to never stop moving, really. Enrol at the gym if you can, walk (not only will you lose weight but it'll be good for your rehab too!) or if you're in a wheelchair, cycle as often as you can! (Like in the top picture.)
Not to make it sound too much like a tutorial but for clearer skin, I recommend exfoliating everyday. Experts only say to do it twice a week but don't listen to them! I exfoliate everyday to enable a smooth base for my makeup.
Then use primer. Then foundation and then bronzer.

Ta-dah!

Hope I've helped in some way or another! By the way, I hope you lot know that if you do have questions or would even like to know more about me (hard to believe hehe), email me, contact me on Twitter or Facebook. I welcome anything; I would love your feedback even on how I could make my blog posts better or if there's something you want me to write about :)

Education, education, education (+ anxiety)

One of the biggest hurdles I have started to overcome is returning to education. I have forever wanted to go back to school after my stroke but was never sure if I could do it. I had changed. Not just physically but I was now dealing with emotional difficulties. I now experienced anxiety and the very thought of being around 'normal' people scared me; would they think that I was weird? That my speech is funny? Or think that I was too different?

As most of you know I had just finished my first year of A Levels; I was studying Psychology, Biology, Chemistry and English. I hadn't done too awful I guess, I had got a B, a C, D and E.
Then I had my stroke and my education was put on hold... for 3 years to be exact. It was incredibly heart-breaking for me. Here I was, lying in hospital and all my friends and schoolmates were in class, studying. They probably didn't feel like it but they were the lucky ones.

After the first 6 months in hospital, my parents brought in my psychology and biology textbooks and my neuropsychologist would then set me homework out of them. Ok, it was only answering the questions but it helped. I felt like a 17 year old again. I felt a bit more 'normal'.
Just before I was discharged my neuropsychologist arranged a meeting with me, my dad and the teachers in charge of sixth form and learning support too at my school.
It went really well. They promised to do so much to help me; their aim was to get me back into studying as best they could. I was kind of excited in fact.
The meeting happened end of July and I returned later that year in September. Like anyone returning to school, the nerves set in and sleep did not come easily the night before. So many thoughts ran through my mind, I was too scared. No, I had to do this.

My first week back at school was a mixture of feelings. I was scared. I was lonely. All my friends had moved on, gone to university.
Back then I still needed a wheelchair to get around as my walking was still weak, so naturally, I stuck out like a sore thumb. I was embarrassed. My stroke had left me a shy, timid little girl but now being in this environment, I felt exposed and even more awkward.
By Wednesday though, those feelings had subsided a little and I had got used to being back. Strangely, it felt kinda normal.
I was sat in the library when my old english teacher walked past me and said, and I quote, "Oh Beth, what HAVE you done?!"
What the hell does that mean? What was that comment in reference to?
Back to feeling embarrassed and shy I went.

Later that afternoon I had a Psychology lesson. It went fine, nothing too hard. When it was the end the group of girls that I occasionally said 'hi' to, were getting ready to go. My teacher asked them to take me, in my wheelchair, with them into the atrium for lunch, to which they nodded.
So they started to walk out, glanced at me, smiling... and carried on walking. There I sat, on my own, billy no-mates.
Fabulous.
The shy, awkward little girl returned. Inside, I was shattering to pieces.

I had to leave early that week anyway as I was going up to London for my heart op but after that, I dropped out. I couldn't handle the rejection. Even such a small comment can be so devastating to someone with a brain injury. There are some things that just shouldn't be said. I mean, you don't have to tread on eggshells around me by all means (!) but this was pretty early on in my recovery and my emotions were a mess.
So I emailed the school and officially dropped out. Again.


3 years spent doing more rehab; my walking got better and so did my speech. I felt more confident now. I still struggle with anxiety.
I enrolled at Milton Keynes College in March 2015 and started in September. And I must add, it's one of the best decisions I've ever made. I didn't know how much I really missed being in the education environment until then; learning is such a privilege and it's one that I thankfully, got a second (well, third) chance at. Albeit I'm older now.
Those of you at university; I know you hate the workload and some days it's too hard for you but seriously, (you obviously won't think so) but you are lucky to be where you are. Never take education for granted.
Yes, I admit that some days I cannot be bothered and I'd rather not go in but when it comes down to it, I get on with it. I wanted this.

Returning to education can seem so simple sometimes.
Hold up.
A brain injured individual can't just 'go back'. So much change has happened; physically, emotionally, cognitively. You may think you're ready, your mind may seem altogether but is it?
All I'll say is don't rush anything. Rehab is so important, get yourself where you want to be first. YOU are the most important thing, not anyone else. YOU.

Happy walking anniversary to me!

Ok, so it's not the anniversary of my actual stroke but 3 years ago today I took my very first steps. I can't describe that feeling, knowing that you're actually doing it, in a way you're proving the doctors wrong but realising at the same time that the real journey has only just begun. You've still got a long way to go.

My feet touched the ground 2 months after my stroke onset. After my family were told that, while I may be able to stand (with a lot of help), I certainly wouldn't be able to walk again. It was highly likely, in fact 100% certain, that I would be reliant on a wheelchair for the rest of my life.
But oh no.
They didn't realise that they were talking to the wrong person here. I was 17 years old, I had my whole life ahead of me.
Pushing their predictions aside, I focused on my goal: to walk again.
When I told my key worker at hospital what I wanted my goals to be, they just went 'err... let's just break it down first. We need to make small, achievable goals.'
I thought 'oh f*** you! Don't tell me what I can/can't achieve!' Was probably a good thing that I couldn't just talk just yet.

The next 6 months were spent working on my balance and my leg muscles, just trying to get closer to walking.
Until one chilly morning in November, my physio casually said, on the way to the gym, 'We're going to try walking today!'
Sorry, what did you say..?!
My face lit up, my smile couldn't have gotten any bigger. I was going to walk. Yes!
First, stand up. Ok, try not to wobble! Right ok, left foot first. Breathe! The second physio pulled my left foot forward. Now move your right foot Bethany. The first physio supported my hips as I stepped, my core muscles still weak. Now just repeat, easy! You're doing it!

After that first time, many sessions were spent walking up the big, long corridor on the RRU, nurses finally happy to see me on my feet rather than flat on my back in bed.

Then after a month or so, I progressed to walking on my own around the ward (but with a stick). I could get to therapy sessions on my own now, a sense of normality (well, apart from being in hospital itself after having a stroke) returned, I was as independent as could be at that moment in time.

And then my fear of falling set in.
I hated walking. I hated going around the ward on my own. What made it worse was the fact that they'd moved me in a room by myself so I was very lonely as I didn't venture out to see my friends in the bay next door.
I told my neuropsychologist and my parents but not even they could fully understand what was going on in my head. I had good stability, my legs and my core was getting stronger. I don't blame them, even I didn't know what was going wrong.

Then I was discharged altogether, my time had come to return home. After an incredibly emotional farewell, I was free. Goodbye RRU.





Over time, my fear has significantly reduced. I'm very stable with walking now therefore I have no reason to feel unsafe, right?
To an outsider, watching me walk for the first time, you would probably say that I walk like a penguin. I waddle sometimes. I may look unsteady but I'm not. That is just how I walk. Sorry if that looks weird to you or would be embarrassing for you, but I don't care.
Like me, if you do feel unsafe at times, have someone there. Don't go out on your own if you're really not up to it. There's pushing yourself but then there is just doing too much. Push yourself when someones at least around you, it's better to feel safe at first when you're practising.

It's like driving a car, you have someone with you while you learn and you're building up confidence. Then you take your test (and depending on whether you pass or not) can drive on your own, you can do your own thing.



It won't ever happen overnight guys. As they say, practice makes perfect!

Emotions aren't scary

I thought I'd write a blog post on the emotional changes after stroke. They can be hidden and very hard to understand. If you're maybe over emotional (like me) people will just assume you're depressed. Which is not the case. At all.

People don't see the emotional side so when you are emotional or anxious, people don't understand and unfortunately, they judge.
It is 100% normal to have emotional changes after stroke or brain injury, it is very common but we still don't like to talk about it that much.

Ok, I'll be open with you, I suffer with emotional lability and anxiety. I see them as the worst combination of emotional problems sometimes.

Emotional Lability (or Pseudobulbar effect- PBA), as defined by good old wikipedia, is 'a neurological disorder characterised by involuntary crying or uncontrollable episodes of crying/laughter.'
Now people looking at this will think 'omg' or they might even think that I'm a complete weirdo who's emotionally unstable but I can tell you now that it's not like how it is characterised. I never experience uncontrollable outbursts of crying or laughter. My emotional lability is characterised by, kinda, 'over-the-top happiness' so basically I'm a very smiley, happy person. If you ask anyone, the first thing they'll say is that I smile a lot. Even when I'm angry or upset I will smile, I try not to make it seem deadly serious sometimes, that helps a lot.
When I get angry I may giggle uncontrollably sometimes or I may cry; I always say that my brain makes it come out wrong. People then think that I'm upset but I'm really not. Trust me.
So it's not awful, right?

Then my anxiety, just like it affects others, I can become sweaty, my breathing will accelerate and my vision can go a bit 'funny', if I come across something that particularly scares or makes me anxious. So with walking (on my own only), I have a fear of falling, so my anxiety can increase then too. It doesn't become severe but it will niggle at me and my breathing might change a little.

And then we have talking. Due to my speech clarity I have an automatic fear response whenever I talk to someone new. I don't panic but just like when your nervous, I will get 'butterflies' in my stomach and may have sweaty, clammy palms. My mouth might dry as well.
Once I get talking, I will not shut up. I come out my shell and talking becomes natural to me again.

Emotions are hard. Sometimes it will be completely different to how I've described. Not worse or anything, just different. It's unpredictable. Everyone's emotions are. Even if you haven't had a brain injury.

My tips for ANYONE experiencing emotional lability or anxiety, similar to mine, would be:
1) Listen to music
This automatically calms me down, no doubt about it. You don't have to listen to a soothing, relaxing tune (well, only if it helps you). I listen to house music or some music thats upbeat and happy a lot of the time so I just put that on. It's what I'm used to, it's what I like.
2) Laugh!
If you're experiencing something that is making you angry, laugh about it. I've found that my mum will always make a joke or say something funny when I'm really angry at something. This will help stop me crying and just help with anxiety about the situation.
3) Breathe!
I know it's said a lot but seriously, breathing does help, surprisingly! From my emotional counsellor at college, I learnt to draw a figure 8 over and over again with your finger while you breathe in and out deeply.
4) Distract yourself
If you can feel anxiety or stress bubbling up inside you, instead of it becoming 'too much', just do something else. Look at your phone. Make a joke.
One time at college I felt my emotional lability beginning to surface, so I just distracted myself by putting my notebook and pencil case back in my bag. My mind instantly calmed.

So if you're reading this, don't be hard on yourself. We all have emotions, we all display them differently.

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.
Scary.

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?
REMEMBER ACT FAST!



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.

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!

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.
Hallelujah!

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.

:)