Northern Ireland Chest Heart & Stroke
Philip’s Story

phillip

I blame Liverpool FC for my stroke! It had been a normal day in February 2012. I’d been at work then came home and watched Liverpool v Spurs. They were held to a draw. Not happy, I went upstairs to go to bed. I had an early start in the morning, taking my car to the mechanic for its MOT. So far, so normal.

I was just coming out of the bathroom when my left arm started to shake. Next my left leg started to shake and within 30 seconds I was lying on the landing floor. I tried to move my left arm and leg but I had no luck. I can’t remember feeling any pain but somehow I just knew I had just had a stroke. I was 19 years old.

So there I was, lying on the landing, all alone. My Mum was away for a few days and my younger brother was staying at my Granny’s. I’d seen the FAST campaign ads on the TV and I knew that I needed to call an ambulance, but my phone was in my bedroom and I couldn’t get to it. I tried shouting for the neighbours. I hoped that if even they didn’t understand that I needed help, they would at least get annoyed by the racket I was making and phone the police. But it didn’t work. I lay there on the landing for 10 hours.

In the morning, when my mum could not get through to me by phone she rang my granny as she was worried my mobile was off. My granny came round to the house and found me. The feeling of relief was immense. But what I hadn’t reckoned on was how difficult it would be to convince her I’d had a stroke. I just knew I had. There was no doubt in my mind. But to her, I was her 19 year old grandson and a stroke was just inconceivable. Eventually I convinced her to call the doctor and he immediately called an ambulance. But even the ambulance crew didn’t really believe that I had suffered a stroke. That’s the first message I’d like to get across – people my age have strokes too.

I was taken to the Royal Victoria Hospital where they carried out a brain scan. They said I had suffered a brain haemorrhage and they needed to operate on me. What the doctors found was that my stroke was a time bomb waiting to happen. A clot had been caused by an AVM, which is an Arteriovenous Malformation. I was born with it. It could have happened at any time. It’s a common cause of stroke in younger people. If you get through your younger years without having a stroke, you’ll usually be okay for life. Unfortunately I wasn’t. That’s the second message – I couldn’t help having my stroke. I was born that way. But if you can make any changes in your life to avoid having one, then do.

I underwent 2 operations (embolisation’s) to have the AVM “fixed”. This involved special glue being inserted into the AVM to destroy it. With the operation itself, there is a 7% chance you’ll have a stroke on the operating table so it was scary. But at least I know it is now gone.

I stayed in the Royal for 3 weeks and then was transferred to the Regional Acquired Brain Unit at Musgrave Park hospital for 5.5 months of rehabilitation. When I arrived at Musgrave, I was told I would never walk again, I would never move my left arm and fingers again and that I would never work again. I refused to believe them. I was 19 years old. I was going to get better. I had a lot of prayer support from my church at Belvoir Parish. I was so insistent that I was going to walk that I was sent to a psychologist as the doctors said I was in denial. Everything they said was so negative. They gave me no hope! But do you know who was right? Me. I walked out of that hospital. I was very determined. Okay, I was using a walking frame but I was on my own two feet and the doctor said to me. “’You were right after all.”

I used to be sporty. I refereed football. I went running a lot. I really hope that one day I’ll be able to do some of those things again. But for now, my left hand side is weak. I can’t balance on my left leg. I can’t stand for a long time without getting tired. I wear a splint on my left leg and need a stick to walk any distance. I need a walking stick at this age. Do you have any idea how different that makes me feel?

It’s the little things that no one else notices that get to me. I can’t carry a cup of coffee upstairs – I have to set it down on each step so I can hold onto the banister with my right hand. I can’t tie my shoe laces. To hold dishes to wash them – I have to set them down. Not that I’m that keen on washing dishes. Even the simple things like putting toothpaste on the toothbrush became an issue. When my friends visited me in hospital I kept saying, appreciate what you have as it can all be taken away in a moment! I do miss playing and refereeing football!

When I was in Musgrave there were other people my age who had suffered brain injuries and were also undergoing rehabilitation. This was a community of people going through the same life changing event, one minute they had everything and the next it was gone! But once I left hospital, I really felt the odd one out. I can’t go to clubs or bars with my mates as I can’t stand for any length of time. At the minute I can’t drive but hope to get my licence back in October. I can’t even wear normal jeans as they won’t go over the splint on my leg.

I’m a positive person. I know I can’t turn back the clock and now I have to make the most of life, get on with it and not feel sorry for myself. But sometimes that’s not so easy and I feel down in the dumps. Last October, just 3 days after I got a car that I was able to drive, I suffered a seizure. I had to give up my driving licence for a year. That hit me hard. It was as bad emotionally and mentally as having the stroke in the first place. The worry that it would happen again literally kept me awake at night. I didn’t sleep for a month. I spoke to the psychologist about it and it was her that suggested I contacted Northern Ireland Chest Heart & Stroke.

I started to attend a Young Stroke Group in October 2012. In terms of confidence and acceptance, that was a turning point. In hospital you have a daily structure and activities but when you leave hospital, basically you are left with nothing. So it is very easy to start to sink. But the Young Stroke Group has activities, structure and other people in the same boat to talk to. Two other people I knew from my time in hospital attend the same group and I have made more friends. To be fair, they are all older than me. But we all share the same issues and problems. Talking with them makes me feel less sorry for myself, and often someone else in the group has worked out a way around whatever problem I am facing. The activities have helped too. The Pilates has helped me physically and I now find it easier to get up off the floor. I also enjoyed the activities that Disability Sport NI organised for us.

But the biggest thing has been confidence. After the seizure I didn’t leave the house much. I was scared in case I had another one and I was also embarrassed about being seen with a walking stick. But being part of the group has increased my confidence. I have gone back to work, which is tiring but gets me out of the house. However it hasn’t been easy and not everyone has been understanding.

During the hot weather, I wore shorts and didn’t care that people would see the splint on my leg. I wouldn’t have done that before. And I feel much more confident socially talking about what happened to me.

I’ve already started to give something back. I’m on NICHS’s steering group for their Young Stroke Service to help them tailor their service to help people like me. I also hope to make a short video with NICHS for them to use in schools. I couldn’t help having my stroke but I want to tell school kids that they should do what they can to avoid this happening to them. I would love to change job. A desk job is fine and when I’m at my desk I’m the same as the next person. But I’d much rather do something more active or worthwhile. I’d like to help other people who have had a stroke or work in disability sport. I’m only 20. There’s plenty of time yet!

 

Find out more about the stroke support that Northern Ireland Chest Heart and Stroke offers.