Jo's Story

For me it all started with ear ache or I should say pain in my neck around my ear and sinus pain along with nausea and high blood pressure.  For several weeks I visited my GP surgery. Many doctors missed the signs.  I was diagnosed with an ear infection even though they said they couldn’t see infection but there was some swelling.  Symptomatically I had pain in my neck, sinus pain where if I coughed or sneezed it shot pain like I’ve never had, high blood pressure and I lost my balance in the doctor’s room.

At work over the next few weeks I found it took me longer to listen and process to understand things.  My employer was not understanding and just carried on repeating faster and louder.  They also missed signs something was very wrong and simply put more excessive pressure on me (but when you work for an employer that actively bullies staff I’m not surprised).

The last visit to the GP was an early evening appointment, where my ear was checked and I was told my ear was fine and I expressed my pain and the doctor pushed hard behind my ear.  I screamed and was crying and was sent away with more pain killers.  I got home and went to bed crying in pain.  In the middle of the night I woke and the pain was beyond anything I can describe.  I saw my phone next to my bed but didn’t know how to use it to get help.  I was confused. I was distressed and screaming but couldn’t talk.

I could see my mobile phone but couldn’t work out what I needed to do with it to get help. My family heard my screams.  All I could say was “pain” and they phoned 111 (I should say here my family only phoned 111 and not 999 because of weeks of diagnosis of ear infection. Had that not been done they would have called 999 with the situation).  At the ‘out-of-hours’ doctors I saw a lovely doctor who I couldn’t even see as my sight had gone.  I couldn’t open one eye the open eye was just total mist!  My mum and sister held me up, practically carrying me.  The doctor was talking but I couldn’t understand but he was very kind.  He knew in his gut something wasn’t right and he trusted that and thank God he did.  He phoned through to the hospital and came out and did more tests.

I was rushed by ambulance to the John Radcliffe in Oxford to the ENT unit!!!!!  Having rude treatment by paramedics in the ambulance I kept saying the word “pain” and had tears as I couldn’t communicate.  The paramedic told me ear infections can be painful and was dismissive, seating me in normal seat of the ambulance unable to hold my body up and the seatbelt was tight around my neck.   I began vomiting and was slumped. I couldn’t hold myself up the seat belt was only thing holding my head up!  I kept saying “pain” and I was made to try and walk out of the ambulance and I couldn’t see or figure out what I had to do to walk or stand.  My mum was holding me up.

They rudely complained and got a wheelchair.  I was slumped in it and kept saying “something’s wrong” but couldn’t explain as I couldn’t get my words out.  My mouth just wouldn’t work normally.  It felt twisted.  My left eye wouldn’t open.  It was heavy and light was horrendous and painful for both my eyes.  I was taken to a side room and examined.  Again, everyone was quite dismissive with me.  I understand it was the middle of the night and I am a younger person so stroke wasn’t on their radar but it should have been!  I was very distressed as I knew something was wrong.  Why was no one listening?  The pain was unbearable.  Then they tried to lay me down flat and I screamed and they suddenly realised something was wrong and I was in a CT scanner in what felt like minutes.  I was sat in the wheelchair waiting for a porter to take me back and he was called into the radiology office.  He came out and said to me he had to take me back slowly as it had been raining and the floor was wet…yeah i thought what the hell are you talking about.  I soon found out. I got back to ENT and was put in a private bedroom in bed and the doctor came and said.  You have three blood clots in your brain called CVST.  I just looked at my mum waiting for her to say something and for her reassuring smile as if I had misheard or to tell me all will be ok.  She then had tears rolling down her face and was just staring at the doctor.  She didn’t move.  It hit me that I had heard correctly.  The doctor said it was bad and they had been told not to give me anything as they would do this on the Stroke ward.  I was immediately transferred to the Acute Stroke Ward and wasn’t given the thrombolysis drug to disperse the clots.  This was the start of my stroke journey.  On arriving at the stroke unit, I had lots of doctors for 2 days.  48 hours flew past.  I was in agony from the swelling in my ear I mentioned earlier….it wasn’t ear infection it was swelling in my brain!  Because it was diagnosed as just CVST here the doctors openly said they didn’t know how to treat it. Nor had they seen it before as it was so rare.  There was no mention of stroke still.  My experiences from this point are varied.  But I want to make it clear – you trust doctors but sometimes you have to listen to your own body and insist things are checked.  For me a simple blood test, weeks prior would have said I had blood clots and may have prevented the extra damage.  If you see a friend or family member, or anyone unwell and just not themselves with changes to their comprehension, understanding, or nausea or pain…. these are all symptoms of stroke.  Get help!  We only talk about the F.A.S.T symptoms and think strokes only happen in old people. THEY DON’T.

It wasn’t until August 2017 (following a long wait from my GP referral to a rehab unit which was the chased by a lovely female haematologist as urgent) where the word “stroke” was mentioned.  Here I had more scans and found out that as well as the 3 CVST there was another small clot in occipital lobe which explained my vision problems.

I spent 2 months as an inpatient at an amazing facility the OCE to help me and then moved to outpatient rehab which I am currently in.  I learned art therapy and set up a web page “Stroke of a Brush” to print my artwork and raise awareness and money for younger stroke survivors.  I have speech therapy provided through the Stroke Association which has been simply amazing.  I owe a lot to them and to my therapist Harriet who understands it’s not about a simple this is what you do to read write speak and spell again.  She tailors it to you and your life and what you would normally do and doesn’t try to create a new you but helps me be me.  Harriet really gets how hard it is for younger stroke survivors and really tries to champion this.

The systems of support are not geared up well for younger or working age stroke survivors. The benefits and support systems are there but it’s very difficult to get them.  I need care, which my mum and family provide and yet because of my age and that we live in the same house my mum cannot get carers allowance, yet if I lived off the system in a house they paid for she would.  The world has changed and the systems of support need to realise strokes happen at any age. If I were married a spouse would get support but because I’m single and living with family we get no support for care.

This world needs to accept the fact that strokes are happening younger and the symptoms should not be dismissed just because a person is younger.  If I had been older and had high blood pressure, balance issues, sight issues hearing and processing issues and one-sided weakness a stroke would have been considered.

Recently in the news they discussed strokes happening in younger people.  “Great” I thought, but then the majority of people interviewed were older and talking of elderly relatives.  It all needs awareness but this angered me because the message of strokes happening more and more to younger people just didn’t come across.

Stroke has many faces and I am trying to champion that.  We may not look disabled or injured but we can be.  It doesn’t mean we are stupid or need people to explain louder or repeat themselves over, we just need more time and support networks geared up for that.  Doctors need to be educated that stroke symptoms are stroke symptoms regardless of age.

I try and see the positives, and many people give up after stroke, but I won’t.  I accept what has happened and believe me I wish it never had, but in a weird way it’s made me a better person.  I’ve learnt to paint and see there are always positives, like art helped me get the use back in my arm.  I don’t have feeling in my leg and was told this is unlikely to change but never say never!  I’m not giving up and I will keep fighting because as much as is known about stroke, there is so much not known about the brain and its recovery or why people are having strokes younger and younger.  The only way more will be known is if we raise awareness and disperse the taboos of being unhealthy, overweight etc., which is why I was happy to share my story when Different Strokes asked for my help.

Rob's Story

In December 2017 I stopped at the post office on the way home from work and as I went to get out of the car I suddenly found myself feeling very dizzy.  I had double vision and also became very hot and felt increasingly sick.  This feeling lasted for around 5 minutes and I somehow managed to call my fiancée using Siri on my mobile phone.  I have honestly never felt that bad in my life – apart from at the end of a very large drinking session!  After seeking medical advice via 111, I went home for the evening, taking ibuprofen as the clinician over the phone assumed I had pulled my neck turning to get out of the car.

The headache I was feeling was excruciating.  It made me feel very sick and I struggled to sleep that night.  I awoke the next morning and as I drove to work I automatically found myself trying harder to concentrate and perceive everything, rather than the usual ‘auto-pilot’ mode which I would normally be in as I drive to work.  As a teacher, it was the last day of school before the Christmas break and I didn’t want to bail on my students – I have a lovely bunch of 10-year olds who were all very excited.

I found the morning difficult, despite not teaching the usual English and Maths, managing the classroom was overshadowed by a large headache.  I was struggling to comprehend the brightness of my screen or even stand up!  At lunchtime I made the decision to go and see a doctor.  On this day, all of the doctors were closed for training so I visited the Walk-In Centre.  As I waited for an appointment I became very warm and I could feel again the awful pain dwelling in my head.  Within a fifteen minute appointment the GP had written an admission form for ambulatory care and sent me up to the local hospital.

Within an hour of being in hospital I had been put on an IV line for the pain and had had a CT scan.  The results weren’t revealed to me, although I was put through to another ward with more specialist doctors on.  Some time later, my fiancée heard my name as doctors were milling through a report.  She heard them mention the ‘stroke unit’, but she didn’t reveal this to me.

A stroke doctor came and explained that I had experienced a large stroke in the cerebellum region of the brain.  Within the scan a large area of material had been starved of oxygen, but they believe the stroke passed quickly, therefore no other area was affected.  It was only after I had been submitted to the stroke unit for approximately 24hours that the impact of the stroke became clear to me.

The feelings of sickness, loss of balance, some co-ordinational motions and fatigue were now plaguing my life.  I felt appreciative to have my own side room at the stroke unit, as this allowed my fiancée and I the time to really take in what had happened.  At the age of 24 I honestly feel that one of the main words I can use to describe this experience is unfortunate.  An ASD repair as a child is thought to be the cause of the stroke, with other causes being ruled out within investigation.

Since being discharged from hospital, I have been working incredibly hard to build up cognitive tasks such as video-games, reading, writing and typing to prepare me to go back to work.  I have also been working hard on various pieces of equipment to improve my balance as well as vestibular processes.

I feel that the Stroke Association, Different Strokes and Facebook have been such a help for me, as they have allowed me to process this event further.  In the future I am looking to raise money for various stroke-related projects and charities, as well as working with young stroke survivors to re-assure them at the beginning and during their journey to recovery.

Ashley's Story

"“My name is Ashley, I’m 24 years old and seven years ago whilst on a driving lesson I had a stroke. I had just turned 17 and was excited to get started with driving, but at the same time I remember getting extremely nervous and stressed before each lesson. When it happened I was actually driving the car and I can remember my whole left side and particularly my left arm and hand going cold and numb all of a sudden. Straight away I leant over to turn off the air con in the car as I thought this was the problem, but by then I had lost the whole left side of my body and my hand just flopped off the steering wheel, feeling very heavy and extremely strange. After the instructor stopped the car we both knew something wasn’t right so he instantly dropped me back home.

When I got back home, the first thing I said to my mum was “I’m having a stroke!”, I then proceeded to drink a glass of water, all of which fell out the side of my mouth. We then rushed to the local Walk In Centre, where they somehow diagnosed that I was having a migraine. Luckily when leaving I was violently sick everywhere, so we went straight to Leicester Royal Infirmary, and then later taken to Nottingham QMC Stroke Ward.

I spent around two weeks in hospital and whilst there I saw the devastating effect stroke can have, not just with the individual but also the family and friends associated. After spending time in hospital I went for Stereotatic Radiosurgery I was told to completely cure me and set me on the path to recovery.

Since leaving hospital to start my recovery, it has been a long hard journey, but I have been so determined and motivated to never give up and not feel sorry for myself and try to get back as well as I can to normality. Luckily I was so young when my stroke happened, it allowed me to recover a lot better than many older individuals. I continued in my recovery to do plenty of ‘physio’ exercises such as picking up things from the floor and using my affected side as much as possible. In fact I was pretty much forced to by my family, and I couldn’t have got to where I am now without them. So, slowly and little by little I regained function in the years post stroke, to the point I am at now where I only have slight weakness/numbness in my left fingertips and an ache/pain in my left side, and I am so happy and grateful to get off so lightly compared to others.

I have been so dedicated since recovering from my stroke to give back, and use my able bodied-ness to help others in a worse position than me. I’ve done a few fundraising events to raise money and also been to help others at my local different strokes group. Also a few big moments for me since recovering have been that I have been to university and completed a degree in a course that I love, and also (one of the biggest moments in my life) I revisited driving lessons after having a psychological fear of it for nearly six years. I passed both the theory and practical tests first time and have now been driving for over a year. Now in the next few months I have planned to do the Stroke Resolution Run, Tough Mudder and a Triathlon.

This experience has made me a stronger and better person, and the whole time I have wanted to show that stroke can be beaten and to never give up and not feel sorry for yourself, because you can achieve anything you want if you put your mind to it. I hope my story can show others that you can get through it if you really want to. We are all in this together. NEVER GIVE UP!”