'I felt like I’d lost my life after my stroke' - why I’m supporting the Stroke Association in their fight to save local support services in East Sussex

My name is Katie Simpson. I'm 30 years old, and a mother of two beautiful girls. I had a stroke in 2013 at the age of 25 years old. I had my stroke whilst I was 16 weeks pregnant, which led to clots in the baby's placenta, causing the pregnancy to end.

In the lead up to my stroke, I had several mini-strokes (also known as a TIA or transient ischaemic attack) which were misdiagnosed as symptoms of a migraine.

Weeks after my mini-strokes, doctors thought I could be possibly having a stroke, and they told me that they urgently needed to perform a CT scan of my brain. At this point, I had lost feeling in my body, and my speech was starting to slur.

Doctors had to make the heart-breaking decision whether to save my life by preforming a CT scan of my brain, or for me to deliver my unborn baby first. At 21 weeks pregnant, I gave birth to my baby son, who was stillborn.

Scans confirmed that I had had several mini-stokes, and strokes on the left and right side of my brain. The strokes were caused by an undiagnosed blood condition called Antiphospholipid Syndrome, which thickened my blood, causing clots on my brain and also in the umbilical cord.

I spent four days in hospital recovering, and when I left hospital I had to move back into my parents' home with my two daughters. The stroke left me with severe fatigue, a communication difficulty called aphasia, left sided weakness in my body, on-going chronic pain, and issues with swallowing, which meant I could only eat pureed food, like a baby.

The Stroke Association supported me when I left hospital, and have continued to support me with many aspects of my life over the last five years.

At the age of 25 I couldn’t believe I had had a stroke – I never thought you could have a stroke at such a young age. You see the FAST adverts on TV and think it only happens to older people. At the time, my little girls were only four and seven years old.

I felt like I’d lost my life after my stroke. It was really difficult. All of a sudden, the simple things I’d naturally do with my children were really challenging – you never quite realise how much you actually use your limbs until you lose the power to move them.

Walking was difficult, cooking, using kitchen utensils, reading a bed time story, trying to help my children get ready for school – it’s so sad when you are the adult, and you can’t do their buttons on their tops, or tie their laces. Even putting their hair up was impossible then! I remember crying because I felt like a failure, and that I couldn’t help them with such simple things. Not was I coming to terms with the loss of my baby, I had the added trauma of recovering from a stroke.

It has been a challenging rollercoaster over the last four years which has left me with permanent disabilities. I still have a numb face and fingers, along with severe nerve pain and chronic fatigue. After a stroke, your life is completely turned upside down in an instant, and it has affected me emotionally and physically. I have been diagnosed with post-traumatic stress disorder as a result, and thanks to support from the Stroke Association, I have regular therapy sessions to help with this.

The Stroke Association have been a lifeline to me and was there from the start throughout my recovery. When you have a stroke, you can’t imagine all the hurdles you’re suddenly faced with. It’s terrifying.

If it wasn’t for the Stroke Association’s support, I don’t know where I’d be today. They helped me apply for support and help with benefits, they listened to me and helped me understand what I was going through. They gave me a grant which allowed me to buy my own anticoagulant machine, which helps me manage the medication I’ll be on for the rest of my life. This gives me some independence back, rather than attending my doctors every few days. Without the Stroke Association, I wouldn’t had had this.

I owe so much thanks to the Stroke Association for being there for me and my family through my darkest days and bringing me out on the other side. The Stroke Association have given me back my self-esteem and confidence. As I result, I’ve been able to get back into the community, I attend stroke groups with fellow survivors, and go along to appointments. They’ve helped me through it all and been by my side the whole time. When my anxiety is high, they understand and when I need a helping hand, they are there to support me.

Hearing there may be potential cuts to the Stroke Association’s funding is outrageous. Without them, there is no help in the local area, there is no hope, support or guidance. They have given me a second chance at a normal life with my recovery and their work to local stroke survivors is irreplaceable, and vital in the local community. I hope for the sake of all the other stroke survivors in East Sussex that they too will have the same support that’s changed my life.