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!!!)