Focus on stroke: My story – Lesley
Lesley, 63, suffered transient ischaemic attacks (TIAs), or ‘mini-strokes’, before going on to have two major strokes. She talks about these events and the long-term impact they have had on her life. As told to Penny Bailey.
I had my first stroke just after my dad died in 2001. He died in Canada. I’d been up six nights in a row at his bedside, then I took a 10.5-hour economy flight back to the UK.
The day after I got home, I woke up with my arm numb and tingling. I thought I’d slept on it in a funny position or trapped a nerve. It was a TIA [transient ischaemic attack, or ‘mini-stroke’], but I didn’t realise. The tingling lasted six weeks – then I had my first massive stroke. I got up one night to go to the bathroom, and the next thing I knew, I was lying on the floor at the bottom of the bed and the dog was licking my face. He never licked my face. He was trying to get me to come round, I presume. Then I wasn’t really aware of anything until I was being carried downstairs on a chair stretcher.
I spent seven weeks in hospital. The stroke was caused by a clot because of the stress I’d been under and very high blood pressure, which I hadn’t been aware of. It put me in a wheelchair, paralysed down my left side. I could speak but it was very slurred, and I’d forgotten how to pronounce lots of words. I knew the word I wanted to say, I could visualise it, but I couldn’t work out how to get it out of my mouth. That still happens now, 11 years later, but only when I’m tired. If I’m finding it difficult to get words out, I think, no, sit and rest. We push our bodies too hard. We think we’re totally invincible, but we’re not.
After my stroke, although I couldn’t communicate back I could still understand every word that was said. People who haven’t had strokes, and don’t understand them, don’t realise that. It makes me so cross when I hear somebody talking to somebody in a wheelchair as if they’re a child, all of a sudden. And they’re not. I try to explain that to relatives of people who have had strokes.
I was very fortunate as I had a friend who is a cardiac physiologist, and she did a lot of physiotherapy on the left side of my body, trying to get some movement back in my legs, arms and feet. A lot of people who have had a stroke end up with their hands clasped, but now I can straighten my left hand better than I can the right one.
I had another stroke two years later, on Valentine’s Day. I found out my husband, Alan, had been having an affair and got extremely upset. I phoned my sister, and she talked to me until I calmed down a bit. Then I went upstairs to try and relax by having a candlelit bath. I never got in the bath – I woke up in hospital again.
I was back in my wheelchair with my left side absolutely useless again. This time I only stayed five weeks in hospital because I already had a stairlift in the house. It was horrendous. I felt like I would never be able to control my bladder, but I found pelvic floor exercises helped. I also struggled to write. I was left handed, so I had to learn to write with my right hand. My writing was terrible at first, and when I’m tired now I notice I can’t write easily.
There were many, many times when I really felt ‘that’s it, my life is over’. But I realised I had a choice. I could sit for the rest of my life in the wheelchair and feel sorry for myself. Or I could try and make some kind of recovery, like I did before. I’d managed to get out of the wheelchair once. I could do it again.
Going to my stroke club really helped me. I still get texts every so often from a couple of people there. It’s lovely to make and keep friends if you’ve had similar experiences. And the hospital and social services people were fantastic.
Physically, there is a lot I can’t do myself – I can’t do my bra up, wash my neck or put in earrings. My left toes still won’t spread out, but I exercise them and try and pull them apart. While I’ve been able to wriggle my right toes, I’ve only just recently been able to lift up my left toes, after 11 years of trying. To me it’s a big thing. I get excited and say, ‘Look, my toe’s moving!’ And I can now lift my left arm up – not for long, but it does stay up for a little while.
I can’t walk very far, I get out of breath very easily and I get stressed more easily because stroke mucks all your emotions around. I still have a problem with my swallowing and there are times when I cough my heart out because there’s a bit of food I can’t swallow. I have to make sure I’ve got a glass of water by me any time I have anything to eat.
I used to keep score for the local darts team, but that part of my brain doesn’t work the same any more. In a way, I find that more frustrating than not being able to move my arm properly, for example. But I’ve learned that you have to accept that your life is not going to be the same as before.
That said, I want to tell everybody that when you’ve had a stroke you have to keep working at it. If you give up, you’ll never be able to move your body. It isn’t easy but you have to persevere if you want to get out of the wheelchair. Focus on the things you can do, not the things you can’t do. The exercises become automatic. Sometimes when I’m watching telly I find myself stretching my hands out and clasping them without realising I’m doing it. When you get frustrated, you need to sit down and relax and try and dwell on the positive things you can do.
I was always someone who kept going, even when things were tough, but now I listen to what my body is telling me. I sit down and relax when I get tired. If I don’t, I end up doing too much and having to have a day in bed, and it’s not worth that. Thankfully, I have fantastic carers that come in morning and night to help me – the fact that they are so good is a huge part of how I manage.
Despite everything, my life has completely turned around. After eight years on my own, I’ve met a new man and we’re getting married next year. I feel blessed that I’ve been given a second chance. It’s a beautiful day, the sun’s shining on me at the moment, and I want to live to 90 and enjoy every minute.
This article is part of the Wellcome Trust’s Focus on stroke, a series of articles, interviews and videos running throughout May 2012, which is the Stroke Association’s Action on Stroke Month.
For more information on stroke, visit the Stroke Association‘s site or call its helpline on 0303 303 3100. If you or someone with you is suspected of having a stroke, call the emergency services immediately.