Debbie

On the 2nd January 2013. My husband left for an early day's work and left me resting in bed. I got up to use the bathroom (being 31 weeks pregnant, it wasn't unusual). At that point I felt the worst headache of my life and I knew something was very wrong.

Both of my elder children were at home and I called out to my son who was then 16 that he should call his stepfather urgently to get him home and his sister (14) to stay with Charlie (2) so he didn't hear and panic. As I deteriorated my son called the ambulance.

When my husband arrived at the hospital I was unresponsive having had a major brain bleed,  a subarachnoid haemorrhage which is a type of stroke. He was told I may not survive.

I was 31 weeks pregnant and any surgery would be a major risk to the baby. So Emily was delivered by emergency c-section on the 3rd. A surgery that my husband was told it was unlikely to survive.

I survived the c-section and I was given the opportunity to meet Emily and say my 'goodbyes' to my husband, mother and older children. I then underwent 10 hour brain surgery to 'coil' and 'stent' the ruptured aneurysm which was the cause of the bleeding on the 4th January. On this occasion my husband was told I would need a miracle to survive.

That was actually the EASY bit. I survived the surgery and was left unable to see, speak, walk or swallow. I also had a major left side tremor.

I spent 13 weeks in hospital including a period in ICU. Over time I improved and with support from the neurological physio team once home, I slowly began to walk again. The hardest thing for me was being SO much younger than the other stroke patients in hospital. I found myself getting quite down.

Discovering Different Strokes through Facebook has reassured me that I'm not alone and it's much more common than I realised. The support that I've received from the group has helped so much in the 3 years since. And I'm feeling that I can now offer support to other people.

Ian

An open letter to those dealing with acquired brain injury

It was April 2014, my perceived self was a frantically busy 48-year old Land Rover technician; mountaineering and scenery junkie; ex-martial artist; watercolour painter; eternal student; husband; father; brother; son etc.

I say I was, because I didn't count on an arterial dissection in my spinal cord depriving my brain stem of its vital juice and reconfiguring a different self. So now, because of aphasia, dysarthria, dyspraxia... I appear like a drunken jaywalker; no more Kilimanjaro, stairs are a challenge, but I can manage that other Japanese art, origami.

After intensive care, I heard that word "hope" all too frequently. Just a step up from wishful thinking, to my mind. I ashamedly vocalised my thoughts: "I wished I hadn't survived". I could barely move, see, speak or even swallow my saliva.

Nevertheless, the nightmare became reality, reality begat acceptance, acceptance begat determination...

Five weeks later I made the overwhelming transition from that Pythonesque hospital environment - with a machine that goes "ping" - to the major anxiety of hearth, home and humble-pie. Nothing had changed, apart from everything!

I had never asked for help before, but fortunately it came. The Stroke Association referred me to Conductive Education - learning how to move properly, or training the brain to rewire itself.

The classes have finished but I am still distance learning.

I was still feeling like a patient when I was referred to Momentum Skills. That's when the self discovery journey really began. Things started to make sense, I started to make sense and understand all the WHY's - well some of them. Training in basic/life skills, cognitive sessions. Psycho babble? No! My advice: engage with all of the program. Be honest with and about yourself. No reason to compare with your peers, everyone has their ABI, but it's your journey, so snatch back all that you can and make a new, better self. The more you persevere, the more likely neuro-plasticity will make lasting, new connections.

Acceptance is not something that happens immediately, in fact I am often frustrated by this strange new operating system in my skull, but there is always new stuff to learn, new challenges, hypothetical mountains. But alas, you'll have to let go of "the comfort blanket" of support eventually, so try to accept the mutability of life and rejoice in the coming tomorrows.

So now I am happily busy, not in aesthetic existence, but in instrumental living.

In October 2014 I returned to my studies with the Open University. I was offered a degree in June 2015, but I didn't want to settle for that, so I am continuing for Honours sake. Maybe even a Masters. I recently completed an Award in Education and Training , and NVQ Assessors Award.

I am now working as an Academic Support Worker at the University of Birmingham helping disabled students in post-compulsory education; a voluntary ICT buddy at my local library as well as a voluntary support worker with the Stroke Association.

But remember - cliche alert - no person is an island, you may have survived a brain injury but everyone who is really in your life during and since that time has suffered from your situation. Repay all their love and kindness with self-determination and empathy - you can't do it alone.

You owe it to yourself and others.

Good luck, may the force be with you.

Danielle

I had a spinal stroke on 21st August 2014, while she was nine weeks pregnant. And was in intensive care in an induced coma for 12 days and paralysed from the neck down. I had to learn to move again but, slowly walked out of hospital four weeks later. My little girl Isla May is now ten months old.

I woke up in the morning to go to work at 6am, but had a pain in back of neck and thought I was getting a cold. That day I had to go to Rochdale for work in my role as an area manager for Farm Foods - my manager told to stay off work but I drove to Rochdale and had pins and needles in hand.

Driving to the next shop after my first stop, I still didn’t feel well and my boss told to go and work from home. I stopped off at the walk in centre and as I was nine weeks pregnant, the nurse took my blood pressure and checked my blood sugar levels etc. She told me to go home and get some rest but said everything looked fine.

I got into bed when I got home, then about 15 minutes later, got up to go to the toilet and felt wobbly. I called my husband Tom, who was working a little while away so my mum came round instead. When she arrived, I went to get dressed so we could go to hospital but I couldn’t get out of bed and so my mum rang an ambulance.

I don’t remember what happened next but went to hospital where Tom also joined us. At first, doctors thought it was meningitis. They took me for x rays and tests. I said I couldn’t breathe, but as I was already on oxygen, they had to put me in intensive care in an induced coma. They did MRI scans but didn’t know if my spinal cord was inflamed or if there was a clot.

I was treated with steroids for three days to get the inflammation down but three days later everything was still the same. Doctors then knew it was a clot and they could see it on the scan. Four days later, I was still in an induced coma and they did another scan – the clot was still the same. They took me to theatre to put in a tracheostomy so they could wake up and could see how much I could move and what I could do. I woke up on the Saturday and was in intensive care for another week afterwards.

Each day my movement came back slowly so they knew the clot hadn’t grown. Luckily everything was also ok with the baby. My right hand started moving straight away – doctors were amazed how quick my movement was coming back.

By Sunday I’d been awake for eight days and went to HDU. I thought my legs were strong as been moving them while I was in bed but when I went to walk, I collapsed after one step. I was in HDU for three nights and then moved onto the stroke ward. It was my worst nightmare as it was full of older stroke survivors. Tom and I celebrated our second wedding anniversary while I was in hospital!

I was moved to Clatterbridge Rehabilitation Centre where I spent just three nights before going home, and once discharged I had had physio every day for six weeks. A friend also took me swimming each night as I wanted to get back to normal for my pregnancy. I was 13 weeks into pregnancy when came home.

I’m still working on my physio – I still have weakness in my left leg but it is improving. My leg can drag when I’m tired and I trip up more now. I do a lot myself but Tom and my mum help a lot with baby Isla.

I’ve now applied to go to uni in September to become a children’s nurse. I now also do voluntary work in Arrow Park supporting people on the dementia ward.

When I had Isla, I had to have a planned caesarean, however my waters actually broke the day before I was due to have the operation!

I do need more help than if hadn’t had the stroke – I do get tired so mum has Isla two nights a week, as Tom works 10am-8pm.

I’m not back at work yet – off until 11th April.

I want people to know that it can happen to someone of any age. I used to go to gym five times a week before my stroke – it can happen to anyone.

Would like people to be positive about it and understand there is life after stroke. I genuinely believe your attitude affects your recovery. The hospital said I always had a smile on my face and I think my positive attitude made a huge difference to my recovery.

My stroke has actually changed me for the better – it has brought my family and friends closer together. I’ve changed my life and now want to do something more rewarding.

Claire

My story before and after stroke

My name is Claire and here is my story.  In 2009 things were great I was 30 and had a loving partner 4 kids and I was working part time and went on holiday once per year. Xmas was fast approaching working overtime to pay for it, I was getting headaches which was usual for me.  On 12th December 2009 I had a headache took paracetamol and carried on with my day, this headache wasn't budging so when came home I got a bath and that's where it started ...  I don't remember much from there on so please bear with me.

I came downstairs sat down had a cuppa but spilled it as I dropped the cup, I was asked if I was OK and as I answered my speech went weird plus the headache was now a massive migraine. Doubled over holding my head I threw up like a thick black stuff at the time we didn't no it was blood. At that moment an ad came on TV the FAST ad my partner wasted no time in calling 999 next thing blue flashing lights.  What I said above is how my partner saw it happening. I drifted in and out of consciousness and was left on what my partner describes as a death ward where you're not expected to make it. 

He came next day to see me. I was so happy to see him but couldn't tell him what was wrong with me as I wasn't sure myself all I knew was when I got up to use the loo I dropped to the floor I couldn't get up. I was scared to tell him this in case he left me, however he told me I'd had a stroke caused by loads of bleeds on my brain that is what he'd been told. I was devastated I lost the feeling in my right side and couldn't do hardly anything for myself and all I did was cry thinking he would definitely leave me now. How wrong was I he told me not to be silly I was his world mum of his kids and he loved me no matter what.  

In March of 2010 I was doing quite well taking steps here and there and learning to cook again, however I kept being sick. Advised to have a coil fitted as pill was no longer option due to not knowing cause of bleeds, I went to family planning confident that I'd have the coil. I had shock of my life I was pregnant how is that possible I explained about having the stroke. Dating scan showed that I conceived around 15 December another shock seeing as I had stoke on 12th and wasn't discharged till 23rd lol. 

Visits to neurologist told us baby had saved my life and my brain must have received messages from within to reboot like a computer.  Now in 2016 my little boy is a healthy 5yr old, I'm now engaged to the man who sticks by me no matter what, our other kids are older and help look after me are really protective of me and tell people about my stroke and how proud of me they and my partner are with how I've done loads in my aceivements in learning to do things again and how far I have come. I love my little family and my partner so much I think that's why I recovered as they say love conqueres all.

Catriona Deliveli

Hi it is almost 2 years since my stroke and I didn't have the typical symptoms as advertised. I was unwell for a couple of days before hand - sick, chest pains then my husband noticed I was limping but as not eating just felt weak. Got up in the middle of night to go to toilet and my legs went. My husband phoned ambulance and despite my telling them I could not move my left leg and arm they said it wasn't life threatening so go to bed and phone doc in morning. A stroke never entered my head so I did as advised and missed the 4 hour timeframe for treatment. As soon as doc came he phoned for ambulance and I was admitted. 

Spent 7 weeks in hospital very disappointed in the amount of physio there I got on far better when I came home I was initially in a wheel chair but now walking and back at work although arm still refusing to cooperate. 

I pay for a private deep tissue massage once a month and the lady that does it is a Russian physio she tells me that the treatment there is very intense while in hospital constant massage and exercise and the majority of patients are able to walk out of there well on their way to recovery so I'm a great believer in early intense intervention. Probably too late for me but I'm constantly trying and researching new initiatives.