"I didn’t realise I was such a fighter"
We support people interested in becoming a Peer Specialist by offering them the opportunity to do a free NCFE level 2 Award in Mentoring through our Peer Support Service.
I was 56 when I had a stroke.
I was working full-time as a Town Planner and due to the cuts we were understaffed and overworked.
I’d had a really hectic day. I cooked tea, and went to bed at 10 o’clock. I woke up at 3 thinking it was my usual hot flush but I couldn’t cool down or turn my pillow to the cool side. I hadn’t realised but I was paralysed on my left side. I fell out of bed and hit my head.
My husband who is a retired policeman and emergency ambulance driver recognised immediately that I had suffered a stroke. He’d seen that my face had dropped, my speech had slurred, and I was paralysed. I couldn’t get off the floor but I was conscious. It was like an out-of-body experience.
The ambulance arrived within three minutes.
Because I’d gone to the loo at 1am, I was within the four hour window to be administered the thrombolysis treatment. This is where a drug disperses the blood clot and it gave me a better chance of recovery.
I stayed in hospital for several days until I could walk with a stick.
The paralysis made me quite unbalanced. I had to sit down to shower. My husband would have to take me to the loo and then he would walk away and give me privacy.
I had to build up my confidence to not use my stick. I can walk unaided now but if someone knocked into me, it would set me off-balance.
Having a stroke was a really strange experience. Not being able to feel my face when I touched it was really upsetting and frightening. Sometimes I’d cry at home, and ask, “Why me?”
The fatigue is horrendous after you’ve had a stroke. I’ve found that more frustrating than paralysis.
I still have trouble remembering to move my hand out of the way when I’m ironing, and sometimes I can catch my hand when I’m cooking.
Early rehabilitation exercises are key to recovery. Because my grandmother had had a stroke, I knew one of the finger exercise techniques that can rewire the brain. As soon as I’d been given the thrombolysis treatment, I knew to start the exercise on my paralysed left hand.
When I was back at home, I also downloaded brain training apps onto my tablet and every day I would do two hours brain training. I think that has helped me enormously with my recovery.
If you’re lucky enough to have the drug, have knowledge of the exercises, and are determined, you can have a life after stroke. A good life!
In hospital my goal was to be able to dance with my daughter at her wedding. But when I got home my goal changed to getting back onto my motorbike. I didn’t think I’d be riding again.
I started riding a bike when I was 19. I met my husband in a pub and when he found out I rode a bike, he dumped his girlfriend and went out with me! It was a shared passion between us.
We used to go on family holidays to France and Scotland with our children on the back of our bikes and I was the first female observer of the Advanced Motorcycle Test in the area.
It was really important that I could ride my bike again. It gives you freedom and I do like a little bit of speed!!
The physiotherapist would come to my house three times a week and I’d be getting on and off this imaginary bike on a dining room chair!
The first time I rode a bike again was in 2017, two years after my stroke. It was absolutely amazing. It was brilliant, really brilliant. I feel like I’ve got a bit of me back.
It’s important to push yourself. I am confident on my bike but I’m also really conscious of the distances I travel because of the fatigue after my stroke. I don’t want to put people in danger.
Recovery can seem so slow, it can feel like a drag. You don’t notice your own improvements.
The most challenging thing out of it all is walking without a limp. It still has to be a conscious thing for me.
But the stroke has made me a lot healthier. I have two nights of exercise off a week but I walk to town on those days.
I’m good if I’ve got a goal and as soon as I could do something in my recovery, I would do it. I remember the first time I could turn a potato in my hands whilst I was peeling it!
We went on holiday last year to a villa with a pool but I kept going round in circles because of my left-sided weakness! I’ve never been a strong or confident swimmer but I’ve been going to the gym to build my strength and now I can swim six lengths – something I couldn’t do before my stroke.
When I left hospital I was put in touch with the Stroke Association. The Stroke Association is a national charity who have been very supportive. They take a lot of burden away from the NHS when it comes to stroke recovery.
I’m now the Chair of a support group set up by volunteers affiliated to the Stroke Association. It’s called BOSS – Befrienders of the Stroke Singing Group 1066. We started a singing group because getting speech therapy through the NHS is so hard.
It’s really well attended and lots of people have noticed an improvement in their voice. The stroke had left me with a monotone voice but through singing and working the muscles around my vocal cords, I now have my expressiveness back.
The singing group has been a victim of its own success though! There are so many lonely stroke survivors who came and wanted to socialise, so we extended the singing sessions to include tea and chat first.
BOSS has also set up other activity groups for stroke survivors, such as an art group, and we are in the process of setting up a walking-wheelchair stroke tennis group as well. We also provide games like skittles and dominoes for people to socialise over, we have had a flower arranging workshop, and talks from a dietician.
Recently the Stroke Association sent me an email with details of a pilot mentoring course for people with long-term health conditions – the NCFE Level 2 Award in Mentoring - that Southdown were running and asked me if I wanted to do it.
It’s a ten week course and it gives you skills in helping and listening to people.
My first reaction was ‘no’ because I get so fatigued, but my family were really encouraging about it.
I contacted the course tutor to express my concerns about my tiredness and she adjusted the course timetable to suit my needs so then I decided to do it!
The reason I wanted to do it was because I was getting a lot of people coming to me for advice as the Chair of BOSS and I wanted to know how to signpost and support them without doing more harm than good.
It was a really informal and relaxed course. Everybody was so lovely, friendly and supportive and we all helped each other with our different challenges. I made lots of friends and met lots of lovely people.
The course involved PowerPoint presentations, role-plays, and assignments. The tutor was really good at tailoring the language she used so we were all comfortable and she was a good jargon-buster too! There was no pass or fail with the course and there was flexibility around how we presented our assignments.
The course tutor was really good at letting me take breaks if I needed them. It was a struggle so when I got home after class I’d go straight to bed for an hour, but my tiredness did improve as the course went on and it’s still improving.
This mentoring course has been a massive confidence boost because since my stroke I would think I was stupid or thick because I couldn’t retain information like I used to. I’ve been able to re-educate myself and learn new things. The coursework we had to do also helped me improve my touch typing speed.
I have found that the course has also helped me focus. After the stroke I found that my mind would wander. But the course role-plays we do have helped me with maintaining eye contact with someone so my mind doesn’t wander.
When we practised the skills we learnt we all agreed to mentor each other on our real-life situations. That was really helpful. We all benefited from it.
I’m a problem-solver and the big thing I learnt was that I can’t find solutions for people. It’s about enabling people and I use that in my role as Chair. I definitely feel more confident in my role now. I feel more comfortable when people talk to me about their issues.
I felt accomplished and I was very proud of myself for doing the course and for finishing it.
I’ve learnt how determined I am. I didn’t realise I was such a fighter. And I’ve learnt how supportive my family are. My husband has been amazing.
One thing I would say to other stroke survivors is to keep going with your recovery, with your exercises. Even when you’re in A&E, don’t stop. Even when you’re tired, don’t stop.
We support people interested in becoming a Peer Specialist by offering them the opportunity to do a free NCFE level 2 Award in Mentoring through our Community Network Peer Service. This qualification allows learners to develop the skills needed to become an effective mentor, focusing particularly on supporting peers who are experiencing mental health challenges.