Bailey's Story

“My name is Bailey and I am 15 years old; when I was three years old I had a stroke. Let’s jump back to 2005, I was just three and my Mum and Dad had just got married. Two weeks after they got married we went on their honemoon which doubled as a family holiday, we went to Spain.

One day whilst on my Mum and Dads honeymoon, I started to feel tired and unable to walk. Suddenly, the right side of my face started to drop, I had lost all movement and then I passed out.

After a few torturous days, I was flown over to Great Ormand Street hospital, where my family finally found out that I had, had a stroke. I hardly remember anything from this horrible time. However,  I look back on photos and hear stories and I have flash backs to certain thing.

I am now 15 years old, and I have had my personal struggles (don’t get me wrong!) But I will never let this disability define me. Growing up, I did not fully understand what had happened to me. In school, I was clueless to why I could not run as fast as everyone else, or why I had to wear an arm and leg lycra sock. Due to this confusion, I beat myself up everyday because of the stroke. I hated myself and envied all the children who I would rather be.

When I got into secondary school, I had developed some anxiety and found it difficult to interact and find new friends. I isolated myself, I did not realise that there are people who understand. That’s when I turned to my school pastoral team and to Different Strokes.

Once I knew that I was not alone, I came out of my shell, and became my own person. And would no let anything get in my way. Now I am accepting myself and the stroke, and I try to think positive about the whole situation. And yes, I did have a stroke, but why be sad about it when I should be working towards helping other children, who are going through the same thing as me, to accept themselves and to let them know they are not alone.”

Abbie's Story

“I’m Abbie, I’m 28, and while I was recovering in hospital I decided to write my story so that I could look back and know I got through it.  I always read other people’s experiences hoping to find someone’s just like mine.  So, I hope now this can help someone else get through another day knowing there is a light at the end of that tunnel.  If I did it, they can too!

Nine months ago… I had a stroke at 28 and here’s what happened.

I am sat on my hospital bed in a ward room that had 3 other ladies as patients.  They were all in their late 80s early 90s.

Visitors walk past whispering, peering and wondering “Why is she in here?  Surely she hasn’t had a stroke?  Why is she on this ward with my mother?”

I feel as though I am in a different room sometimes; that the curtains are magical with sound-proofed doors.

I am embarrassed; embarrassed that they think I had an un-heathy lifestyle that landed me in here, when in fact I was just ‘normal’ with a bit of bad luck. I went to work, came home, I went for dinners with friends…..so my life was never an exciting tale but whose really is?

It all began during Easter bank holiday 2017 when I was out for dinner with the girls.  I had just tucked into my dessert and realised that I had a slight ache at the back of my neck, on the left.  I went dizzy and collapsed off the chair to my left.  Then the sickness started, over and over…luckily I was positioned right next to an ice-bucket…..What a life saver!

I put my head between my legs to stop the spinning, but nothing helped.  My throat felt as though it was closing in on me and panic began.  We were all convinced that it was food poisoning and one of my friends booked me an emergency evening appointment with a GP.

We stumbled to the car but once I got in I felt OK.  Then began the migraine symptoms that I’m so used to.

I have suffered from aura migraines from before I can even remember – tingly arm, numb tongue and face, loss of vision and speech are dangerous signs, but I guess I had just became so used to them.

When we met the GP I was diagnosed with a migraine and a tummy bug and prescribed some tablets to get me through, although when it came to swallow them my throat was in bits and I couldn’t get any liquid down.  It seemed obvious to put this down to the constant sickness.

Home we went.

Finally, I was in bed and sleep would be the healer.  A dark room and a cold flannel would make tomorrow a new day and I would feel fine again.

Sleeping was easy… but then the morning came.

I tried toast and ice lollies to fill my empty stomach but I couldn’t get anything down my throat.  Why was it still so sore and why was it all such a struggle? Then the headache began.  I couldn’t say it was the worst pain I had ever experienced, but it was a pain I will never forget and in a very specific area, just on the left side.  It was as though a spark was shooting from my neck to forehead, over and over.

My fiancé Richard booked me another emergency appointment with my local GP knowing this didn’t match my usual migraine symptoms.  Then began the longest 10 minutes of my life. We live in a three-storey house and I was on the top floor.  The car seemed like a world away.  I couldn’t tilt my head without being sick and I would collapse whenever I tried to stand. How was I going to get down these stairs? On my bum!  I shuffled my way down the floors, constantly thinking “don’t be sick, you’re nearly there, don’t be sick you’re nearly there!”

Finally, I got to the front door where I was then carried to the car.  I still remember the relief when the door closed.  I was in.

Next challenge!….Getting out!

We pulled up to the doctors and I flung my arm around Richard’s neck.  All I wanted to do was fall to the floor and crawl my way there.  I shut my eyes, partly for embarrassment of who I would see while in my choice of mismatched PJs, but also because it was easier to have them closed than to try to take in and make sense of all my surroundings.

I was told to go to hospital.  My eyes were not responding and I couldn’t place one foot in front of the other. In my head I did think that they would see me back out the door when we arrived.  It’s surely just a migraine.  What else could it be? When we arrived I remember asking “Do you think I could go in a wheelchair?” before thinking that it was a stupid comment as someone else would need one more than me.  I’m only 28, but I just couldn’t walk!

Once in the assessment unit I was on the bed and wondering how long it would be until they sent me home. I was given anti sickness drugs (best thing in the world – I could move my head again!) and sent for a CT scan. The doctor mentioned that I would probably be in for the night.  I even laughed to myself, thinking, “well that’s very dramatic!”  But after the CT results I didn’t.  There had been some changes to the left side of my brain.  I was getting transferred to a different hospital who specializes in strokes. Huh?

That night I arrived on the stroke ward and everyone was buzzing around me and everything was checked.  I hadn’t had fluids in a long time as I still couldn’t swallow.  That’s when I was told I was suffering from Dysphagia; which I’d describe as a stroke symptom where your throat muscles are paralysed. A feeding tube was inserted through my nose to finally fill me up. But I can tell you it certainly wasn’t the flapjack that I’d craved for so long.

My left eye wouldn’t open.  On one hand I thought It was just me being lazy and it was easier not to open it.  On the other hand when it was open the double vision was unbearable! My speech was there but it was slurred and more for the fact I couldn’t swallow my own saliva….Who knew we produced so much?

After my MRI it was confirmed I’d had a spontaneous left vertebral artery dissection.  The doctors couldn’t tell me the cause.  I might have been born with it or I may have had a trauma but I may never know as I was perfectly fit.

At first I was unable to walk at all.  I couldn’t read or watch anything.  I wore an eye patch to make my eye work.  I slept for the majority of my days.  I was unable to even sip water and looking after my own daily needs were impossible.

It really was as though my brain had turned itself ‘off’ to my body and I had no control.

I remember one day swirling orange squash around my mouth for some flavour (I had to spit that out though) and it was the best feeling in the world.  I was beaming from ear to ear!

15 Days after the stroke…

I’m now on my 15th day….and today I walked outside without a stick, up some stairs and I have been told I can start eating actual food.

While I’m sat on my bed I’m watching three other ladies go through their own recoveries.  I can forgive their loved ones’ stares and whispers, when one is about to leave to go to a care home for her foreseeable future, one is fast asleep to the world and another is trying to remember who she and her husband are while he looks on at her longingly…

….9 months on 

I can’t quite believe this was me. I now have a wonderful husband. I’m back at work. I’m driving. I have started a new college course. I am going to Miami and I am soon to become and aunt!

My advice to any stroke survivor would be to take it slow. Everyday you will see some sort of success. It could be as simple as opening the curtains! That is still a huge achievement that you were unable to do yesterday. 

People’s reactions never really change when they find out what happened. They just don’t know what to say other than…”but you are so young!?” I have learnt this is ok. Until it happened to me I would never have known just how many strokes occur in younger people. It is now my turn to educate.

Let people help, live for now and know you are stronger than you think!”

Lauren's Story

I had my stroke in September 2012 when I was just 20 and due to be returning to university a few weeks later.  It started very slowly and all I remember was having a horrendous one-sided headache and was occasionally sick when I stood up.  My mum is a nurse and was concerned but over the course of 5 days I was sent home from A&E twice, being told it was just a migraine and it would get better with rest.  On my third visit to the hospital (6 days after the onset of headache) a junior doctor noticed a very slight left-sided weakness so they eventually decided to do a CT scan.  The first scan highlighted a bleed on my brain and I was admitted for observation.

The following day I woke up in the afternoon to have ongoing and regular neuro observations and I was terrified to realise that I was completely unable to feel or move my left side from my neck down.!  The next few hours were a bit of a blur, but I was rushed for more scans and was blue lighted from my local hospital to St Georges in London and the on call consultant was asked to come and review me.  It was here where it was found that I had a cerebral venous sinus thrombosis, a clot in my jugular vein and a large associated haemorrhage.  It was suddenly a lot more serious than was first thought and my mum had to make the awful decision of what treatment I was to have. 

Along with the doctors it was decided to thin my blood to try and disperse the clots but there was a risk that it could make the bleed worse, which could have been potentially fatal.  Over the next few days I started to realise more of what was going on but still was completely paralysed down that one side.   I was told to expect the fact that I probably wouldn’t walk again and would have to undergo a very intense rehabilitation.

Recovery was one of the hardest things I have ever done both physically and mentally.  I kept a diary of my progress which allowed me to look back to where I started if I was feeling down or had a bad day with no improvements.  I was transferred back to my local hospital and subsequently to a neuro rehabilitation centre where the hard work was to begin.  I had physiotherapy at least once a day and other sessions included occupational therapy and psychology, which boosted my motivation and determination. The hardest part was seeing all my friends go back to university and carry on with their lives when I wasn’t able to do much for myself at all and was relying on other people constantly.

However, despite being told my progress was likely to be minimal I left the rehabilitation unit walking just 4 months after my stroke.  Recovery continued over the months but as soon as I started walking I signed myself up to do a 10km run just 9 months after my stroke.  At the time I didn’t care whether I would walk the whole thing or even crawl over the finish line, but it gave me the determination and drive that I needed.  They haven’t come to an exact conclusion of my stroke but a few months after I was diagnosed with Behcets disease which is a very rare autoimmune disease which causes inflammation of blood vessels.  This is what they think caused my stroke. Behcets has left me dealing with daily pain, fatigue and joint inflammation but now that I am on more medication it is stable….for now.  When it flares up it exacerbates my left sided weakness and there are times when I have to still use a wheelchair or crutches.

Different strokes helped me a lot during my stroke and recovery and I started following through Facebook.  I got to speak to other people who had gone through similar experiences and it was amazing to not know that we are alone.  About a year after my stroke I was contacted by someone who asked me if I would come and visit her daughter who was in hospital having had a stroke.  I was uncertain how I would feel if I went but I am so glad that I did.  It was giving back what Different Strokes had given me only a year before and I was able to give that person some hope that recovery, despite being tough, is possible.

Now, 5 years on, my life couldn’t be any more different.  I started back at university in September 2017 and am a student paramedic.  I worked as an ambulance technician for a few years before and feel that my experiences will make me a better paramedic as I know what it feels like to be a patient and not having any idea what is happening.  I am hoping to graduate in 2020 but know that with my health I may have to take slightly longer.  It is challenging every single day with my health and fatigue, but this only makes me more determined as being a paramedic is my dream.  I know that realistically I won’t be able to work frontline for the rest of my life but even if I can only do it for a few years then I hope that in that time I can help and inspire as many people as I can.

The one piece of advice I would give to someone is not to give up and to use the support of anyone who is offering it to you.  It is easy to look back and see what you used to have or be able to do but unfortunately you can’t change the past.  Having a stroke at any age is horrendous but through it you will become a stronger and more resilient person.