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.
Tuesday 7 June 2016
Sunday 27 March 2016
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.
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.
Saturday 12 March 2016
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!!!)
Wednesday 24 February 2016
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.
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.
Wednesday 17 February 2016
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 ;)
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 ;)
Sunday 24 January 2016
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.
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.
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