Laura's story

I had a stroke 11 years ago in 2012 when I was 35. Fifteen years ago, I was fit and young, a mother of two boys, had a busy social life, was a Midwife working independently, running a business - juggling many different balls. I would be called in at a moment’s notice to births both day and night. I was quick to deal with emergencies, to build relationships with people from all walks of life, was decisive and able to flex to changing situations.

Unfortunately, I discovered a heart condition in 2005 which was being monitored culminating in me having open heart surgery two years later, replacing two of my heart valves with mechanical ones. This is a major health event, but I took it in my stride. It was purely physical, and I used all my normal coping mechanisms to manage the surgery and rehab, getting back to my normal life as soon as I was able. I looked forward to getting back to my career as a Midwife and my busy role as a Wife and Mother.

My heart seemed to be fixed, the only thing I needed was to take two blood thinners to ensure no clot formed in them. Otherwise, I was as good as new. I began working at the hospital doing shift work as a Midwife and then moved into management doing quality control. My health seemed to be ok apart from a bleeding problem caused by the blood thinners, once again purely physical.

However, four and a half years later, during a Midwife Meeting, I had a sudden headache like as though I’d been hit over the head with a plank of wood. I stumbled to the ward to get some pain relief, where I started vomiting and fell over. I’d had a stroke!

I didn’t realise the significance of how serious my headache was, thinking it was a migraine but, within an hour, I was unconscious. A CT scan showed a significant bleed in my brain due to the blood thinners and I was helicoptered to Auckland City Hospital for urgent brain surgery. My poor family went through huge amounts over the next three weeks while I lay in a coma, having nine operations and developing meningitis. The stress on them was astronomical as they were told I was unlikely to live, then I would likely be a vegetable, may never leave hospital and, if I did, would likely need to be cared for in a nursing home. I was none the wiser and, when I did wake up, I slept most of the day anyway and the bits I was awake for were confused and illogical. My parents were hurt because I didn’t recognise them at all, and people had no idea if this would be permanent.

After a month in Auckland, as soon as they could get me to breathe without the tracheostomy, I was allowed to transfer back to our regional hospital in Whangarei for rehabilitation. This is still mostly a blur to me of Nurses, Occupational Therapists, Physios etc while they worked to help me first learn to swallow, then eat food again, then control my vomiting, relearn how to control my bladder and bowels, become less confused so I knew who people were, what had happened to me, and where I was.

After another month, I was allowed to go home, although they did want to send me to a rehab facility in Auckland for another six weeks. I declined as I just needed me to be at home to take the stress off my family. I couldn’t do anything such as cook a meal, do housework, and still slept three times a day. I vomited around the clock for eight months despite continuously being on two medications. I had various health professionals teaching me how to balance, first sitting on the bed, then learn how to walk again with a frame, then a crutch, then a year later how to walk unassisted.

They helped me with my double and peripheral vision, patching one eye for a while and giving me eye exercises. They taught me how to control my dizziness with fatigue management, moving my head from side to side and gentle challenges such as looking up. They helped me learn how to manage my emotions with psychological assistance which helped me learn to adjust to the changes and what had happened to me. Processing emotions is a brain function and just trying to understand, let alone control, my own emotions was exhausting!

My confidence had been squashed - no longer able to contribute in any way. I couldn’t drive the children to school, earn money for the family, help people to have babies, cook meals or do housework. I was a burden, and this takes some adjusting to!

Over the next year, I worked steadily on my rehabilitation and a year post-stroke got my license back to drive (for half an hour at a time) so I could begin trying to return to work. I was very focused on this as I wanted to get back to normal (as I knew it)! I started back for an hour at a time, just working a desk job at my quality control job. This was exhausting with the drive to and from work. I would often have to sleep in the car before I could drive home again. However, my tolerance grew so then I increased it to two hours at a time.

My rehab continued. Multitasking was very difficult for me, as my brain could only manage one thing at a time. It seemed during this process; I had become a man! I couldn’t retain information or keep up with meetings so I used a dictaphone to record talking which I could listen to at my own pace. I learned to write everything down because my memory was so bad, and I could easily get distracted. And I found being in the outside world, I needed help with my hearing. As hearing is something your brain has to process, and I struggle with doing more than one thing at once, I would get confused with too many different noises - about which one to listen to. They diagnosed me with auditory processing disorder and gave me hearing aids to make voices louder than any background noise, reducing the load on my brain.

I struggled (still do) with pressure, needing to do anything quickly just making me overwhelmed, bringing emotions to the fore. Doing things slowly when planned for was how I was managing my return to work. I tried for 18 months to get back to my job, but soon realised Midwifery was too hard, as babies don’t adhere to plans. You need to be flexible and able to deal with emergencies. It is not something you can keep in routine and plan for. However, I was managing the computer work and got myself to four hours at a time, three days of the week.

The one obstacle, I couldn’t overcome was fatigue. This has been probably my greatest challenge and yet it’s so invisible. It is what caused me to lose my job and it seems is the one thing us stroke survivors all seem to have in common. I think people at work would think that they were tired too, (I mean who isn’t?), and yet I got the luxury of having a sleep. People would see me when I was well slept at my best. But as soon as I’d get tired, all my symptoms returned in floods.

The problem is fatigue management after stroke is not a luxury. As I start to get tired, it becomes harder to balance, cope with my emotions and speak a concept into words. I am no longer functional. It is like being Cinderella and when the clock strikes midnight, turning into a girl in rags.

People would see me functioning and looking fine so I don’t think could really understand that I could not push through this, that if I don’t sleep when my tank is running low, I am no longer able to be that person. And it takes several days in bed to just get over any slight push into my fatigue window.

Even now, 11 years down the track, I sleep every day for an hour in the afternoon and cannot manage without it. People say it would be lovely to have a nana nap, but I cannot do anything for more than a few hours at a time, and I found that if something is more taxing such as Christmas day, I’d have to sleep through Christmas lunch.

It is a minor setback in the big scheme of things, but it means I cannot have a job, do a daytrip, drive far, attend any afternoon events so it does seriously affect my life although I look healthy now and I think people see the stroke as something I had a while ago - that I should be over it now. You cannot see the brain and its injuries, so it is very isolating that people do not understand this, and no matter how hard you try, your brain needs rest to heal.

The stress of when my return to work failed was too much for me and I needed lots of psychological assistance to get through it to try to adjust to my new way of life - my limitations, people’s ignorance of these due to their invisible nature, finding a new purpose now my career was over, the reduced self-esteem, the lack of independence.

Anxiety is another new thing that I must deal with because everything being so much harder now and concern that I won’t cope is another emotion to process and try to understand. That, on its own, is exhausting. Stroke has meant the loss of my career –something I had worked hard for which gave me huge personal satisfaction, status, a sense of purpose, feeling of worth, an income, workmates and social events, the fabric of what makes up an ordinary life for someone my age. It is normal to be asked what you do, or what your occupation is. When I say I am not working now, people ask, “Don’t you get bored?” but little do many know boredom is a luxury…

Stroke has meant the loss of several of my friends – with comments illuding to me not trying hard enough, having a negative attitude, it all being in my head or me not being different to anyone else, and they all manage to work. It is also hard socially to keep up when you can’t engage in the same activities as many and they can’t see your limitations.

Stroke eventually led to the loss of my marriage as I believe the personality changes and new accommodations required to manage my life were too much. Stroke has meant a constant feeling of failure in my inability to achieve other people’s unrealistic expectations of me, once again caused by a lack of understanding. Humans are social creatures. We all want to connect with other people and stroke is a very lonely experience. Most people my age have jobs and careers with colleagues and social events, busy social lives, young families which is very different to mine.

I have found our Stroke Support Group to be a lifeline for me, a vital part of my recovery and acceptance of my ongoing recovery. There, I also have colleagues, a social life. We do things together that are positive. Together, we look at things that will help us, such as exercise groups and visiting speakers. It is one place I am understood, where my injury is validated, and I feel worthy. It takes the isolation out of the stroke and makes it a shared experience. It is a place where I am encouraged for what I can do and achieve rather than how society judges me on what I can’t do.

The support group has really helped my self-esteem and ability to deal with issues as they arise. Talking to others going through some of the same issues has helped give me ideas on how to manage things, as well as a problem shared is a problem halved. Hearing other people’s stories makes me know I am not alone. It takes away the loneliness of the experience. Information provided helps as I can remove it from just being my problem, to being one which is just part of the stroke. Our Support Group has been a lifeline to me at a difficult time and have helped me learn how to live life to the full with a brain injury, how to manage it successfully.

When I took on the role of coordinating the Support Group, it gave me a sense of purpose and meaning as I feel useful in doing something that I strongly believe helps people. It makes me feel that this awful experience of stroke has given me something valuable. It has gifted me with an experience I can share with others. It has gifted me with understanding, and now a group of friends that can support one another as we travel along similar journeys.

Managing the Stroke Group makes me feel appreciated by others, that I can make a difference to something I know, personally, how much matters. As a Midwife, I used to enjoy helping people adjust to parenthood a major life event and now I find that same purpose. So you look at me, and you see a normal person in front of you (I hope). But I have realised, although I am not the vegetable they predicted, this brain injury will be with me for life and I need to continually work hard to improve.

I have made leaps and bounds in terms of where I am now compared with where I was then - people looking at me and thinking I look fine now. But I am still only productive for a few hours at a time before I need to sleep. I cannot deal with stress (as in I fall to bits, become exhausted and therefore non-functional). I struggle to deal with my emotions, constantly forget what I am doing. I struggle with summarising or telling a story without a guide. I am still continuously working on my rehab with the help of various health professionals and I have been told this is likely to be required lifelong.

Stroke is totally underestimated in society. I have had had open heart surgery and many in our Stroke Support Group have had all kinds of other serious ailments but stroke tops it all off, as the lack of understanding is very isolating. There is sometimes nothing visible for people to see. Or the physical presentation does not represent the entire effects of the stroke.

I feel society sees stroke as mainly something physical. But my problems are minimally physical. Physically, I have some problems with my vision and balance, which I manage with fatigue control, behavioural optometry and Tai chi. Some of the things I struggle with now that are unseen are…

• Being inefficient
• Getting lost
• Remembering people
• Time management
• Making decisions
• Holding focus
• Rambling and struggling to get to the point
• Not being able to take passengers when driving
• Driving only for short periods
• Prioritising
• Overstimulation being overwhelming
• Inflexibility
• Social only being within a controlled environment
• Not being able to multitask - like doing simple things such as cooking or making coffee as well as talk
• Forgetting events
• Hearing comprehension affecting my connection
• Not being able to fit into the pace of the normal world
• Crossing the road being difficult
• Getting flustered if too much is happening or going to happen at once
• Easily becoming irritated
• Struggling to work things out as I get tired – brain becoming like a sieve and nothing sticking, feeling dumb
• Most of all fatigue – I describe my brain as like an old cell phone battery which takes longer to charge, this charge not lasting long, dropping faster if too many apps are open at once, sometimes freezing.

I have had psychological assistance throughout the entire journey learning strategies to manage and structure my life, manage relationships and work through problems. Change became difficult and processing challenges harder. Making decisions and remembering why needs a lot more work than a non-injured brain. I have help to learn to trust my own judgement, grieve the loss of the old me and the future I had imagined, learning to accept the stroke and find meaning in my new life.

I am concerned my story sounds very negative, but I hope through me sharing my story and the problems caused by my stroke, you may hopefully have a little more understanding about this very common but very invisible illness. And also, some understanding about how beneficial a Stroke Support Group is when encountering it.

I am extremely grateful for all the support I have had getting to where I am today, and for the life I have as a result. I am able to connect more intimately with people going through other significant health events. I know now not to take the future for granted.

Every day is a gift.