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 :)