Debbie’s story “Recovery from a stroke is an emotional rollercoaster” When Debbie from Comrie, Perthshire suffered a stroke at the age of just 40, she felt so isolated despite having her amazing family around her. She found speaking to our Advice Line nurses and joining a local peer support group really helped her recovery. Out of the blue I had my stroke on Easter Sunday 2016 and it happened completely out of the blue. I had no warning signs at all. At the time I was off work for the Easter break and was spending it at home with my husband and young son. That morning, I got up, had a shower, put my make-up on and was planning a trip that afternoon with my neighbours to take the children on an Easter egg hunt. Everyone was coming to mine with all the children before we headed off. As I was coming down the stairs I began to feel dizzy. I thought it was because I hadn’t had any breakfast so I headed to the kitchen to make myself a cup of tea and some toast. I then started to feel sick and light headed. It was how you feel when you are a little bit drunk and the room is spinning. So I sat down on the sofa. That was when I started to feel pins and needles from my right finger, up my shoulder and down my legs. I couldn’t lift my arm and remember looking at the photos in the living room and my vision was funny. I tried to speak out loud but couldn’t. I tried to stand but I fell to the side. Luckily my phone was by my side and while I couldn’t put my pin number in I was able to use my thumb print and hit last number recall, which luckily was my husband’s number. I can’t remember the phone call at all but my husband said I was just making noises and he knew immediately something was very wrong. Thankfully he was only a minute or so away so he got to me really fast, he called an ambulance and my neighbour, who is first aid trained. She took one look at me and immediately did the FAST test. Because of where we live it took an hour for the ambulance to arrive. I was taken to Perth Royal Infirmary and my husband was told I’d had a stroke and that I needed a number of tests but that the next 12 hours were critical. At this point my husband didn’t know if I was going to make it. They tried thrombolysis but I didn’t react well to it and started experiencing side effects like mini strokes. The first thing I remember of this time is two days after the stroke when my mum and husband were sitting next to me telling me I had had a stroke. I couldn’t move my leg or arm and my speech was slurred. My stroke consultant told me I had had a major stroke and that I would have to stay in hospital for a while. I was in the High Dependency Unit for five days before being moved to a stroke rehabilitation unit where I stayed for six weeks before I could get home. Recovery and rehabilitation in hospital My initial recovery felt really slow. First I got my speech and eyesight back but I was still unable to stand or wiggle my toes. I could just about move my arm but my co-ordination wasn’t good at all. When I was little my grandpa used to tell me to use my forefinger and touch my nose, and when I tried to do this I was upset to find I couldn’t. It seemed to take ages to get from standing and being wheeled to physio in a wheelchair to eventually walking to physio myself using a walking frame. Because everything seemed to be going so slowly I set myself mini targets each week. For example, one week my target was to hold a ball. I think my ‘can do’ attitude really helped me to recover in hospital. I am not a sit down person so I was determined to get myself out of hospital. I was the youngest on my ward and the physios could see that I was hugely motivated to get myself moving and to get home. I made sure I listened to the advice I was given and I did my exercises as regularly as I could. I also make sure I still do them as regularly today. Different hurdles to overcome Returning home wasn’t easy. Every day there were different hurdles to overcome. Before I was able to get home, I had two visits with an occupational therapist and an overnight stay too to see how I coped in my own house and if the equipment I had was suitable. It was also really helpful to let my husband and son see what was ahead of us. It was however two more weeks before I actually got home. I felt really anxious about it even though I was obviously desperate to get home because I was worried about leaving the safety of the hospital and whether I would be able to cope. Just walking, which you take for granted, wasn’t easy. One thing that has made a big difference to my life is the fact that I’m able to drive again. For nine months, I wasn’t able to drive and because I live in a fairly remote area, getting anywhere was difficult. There isn’t a good bus service in my area and taxis were too expensive now that we had turned from a family with two salaries coming in to just one. Getting support I really struggled with the return back home after hospital. I started feeling really anxious and depressed but I kept my feelings to myself. I wanted everyone to think I was back to being the normal, smiley Debbie. Despite having my amazing family around me, I couldn’t help feeling increasingly isolated. I was too ashamed and embarrassed to tell them about my worries and how I was really feeling. I felt like I was reaching breaking point when I finally decided to do something about it. I sat for a long time before picking up the phone to Chest Heart & Stroke Scotland’s Advice Line. I even hung up a few times before plucking up the courage to stay on the line. But when I did get through, the nurse was absolutely amazing. I felt like I could really open up and ask all the personal questions I needed to ask about my physical and mental health. They’re expert stroke nurses so they knew exactly what I was going through and what I needed to hear to make me feel at ease. After that very first call, I felt so much better about myself. It really was a lifeline for me and I know they’ve helped so many others through dark times. The nurses are absolutely worth their weight in gold – I don’t know what I would’ve done without their help and their friendship. I would’ve been lost without them. I also discovered there was a Chest Heart & Stroke Scotland stroke group in Crieff so I got in touch with the Community Support Worker in the area to see if the group might be something for me. She was really helpful and after chatting it seemed like there was a group further away in Perth that might be more for me. I told Carol from Chest Heart & Stroke Scotland that I was struggling with transport and she very kindly arranged for me to get to the first meeting and was there to introduce me and help me get over the first hurdle of being brave enough to go along. Joining this group was a great step forward for me. Just talking to others helped. I hadn’t spoken to anyone for a long time apart from my family or nursing staff and I was feeling increasingly isolated from other people. Family were there for me but it’s not the same as talking to other people who know what you are going through. Recovery takes time Recovery is challenging on many levels and it takes time. It’s a long-term thing recovering from a stroke. At first you see a lot of small changes and you keep improving which helps you to stay positive and focused. Then you also see some big changes such as when you go from not being able to walk to walking again. But as time goes on you have to face the fact that some things may not improve any more. For example, I’m not sure my leg is going to get better so that is something I will have to cope with for the rest of my life. I am however determined to turn something bad into something good. I take any opportunity I can to spread awareness about stroke and how to reduce your risk of a stroke. Recovery from a stroke is an emotional rollercoaster. I still have days when I’m very emotional and these are hard difficult days but I know that it will pass and I try to remind myself about how far I have come in the last year. As a person I would say I’m a very focused individual but I do have good and bad days. If I have done too much then I do find I struggle and I can be very tough on myself. It can be easy to get very down and spend time thinking ‘why did it happen to me?’ It’s also all too easy to keep thinking back to times in hospital when I cried because I couldn’t move my fingers but you have to pull yourself back and realise how far you have come. Reducing the risk It’s hard not to worry that you might have another stroke but I’ve taken steps to reduce my risk in lots of ways. I’ve given up work to reduce stress. I make sure I go every 8 weeks to my GP for blood pressure checks. I also knew I needed to lose weight to be healthier so I joined Slimming World and lost 24lbs. I have read up on other changes that can make a difference such as reducing cholesterol and changing my eating habits. I realised in the past I was probably making the wrong choices regarding food so now I make sure I cook fresh and eat healthier food. I focus on what I can eat rather than what I can’t eat. It didn’t take much; I just adjusted my old recipes by swapping some unhealthy choices for healthier ingredients. For example instead of using double cream I now choose a lower fat alternative.