This week is Stroke Awareness Week, so I thought it would be timely to begin a three part series of posts in order to help raise awareness of stroke in young people and the effect it can have on their lives and the ones closest to them. I have collaborated with friend and stroke survivor, Sharon Corrigan to come up with this little series. This post will be a recount of my own stroke survival story at the age of 24, my recovery and the effect it had on my life and my loved ones. Sharon was lovely enough to dedicate some time to share her story in a Guest Post which will be published soon. For the final post Sharon and I will be reflecting back on trauma and recovery and talking about communicating with loved ones about what is best for help and care after a brain injury. We believe this series could be relevant to anyone going through a major health trauma or chronic illness, so it will be worth the read. I hope you enjoy the series and can take a lot from them. If you would like to be notified of upcoming blog posts, please subscribe to Blind Intuition to have them delivered to your inbox or follow me on social media: Facebook, Twitter and Instagram.
My Stroke Survival Story
The day I had my Stroke…
Cameron and I had only been dating for about four months. I was living in Hobart and he was living in Melbourne. We were taking in turns flying to each other’s home town every three weeks to see each other. The weekend of the 10th of December 2011 was my turn to fly to Melbourne to celebrate Cam’s birthday and attend his work Christmas breakup. We had a great weekend. On the 12th of December I woke up at around 7A.M. I remember feeling a bit groggy , however I only had a couple of wines the day before at the work Christmas lunch, so it wasn’t a hangover. I got up to go to the toilet and this intense muscle stiffness started to shift down both sides of my neck. I thought I just slept on it wrong. I sat down on the toilet and a loud sound erupted in my head. It sounded like a bunch of mosquitos in my ears, but really loud. I remember grabbing the wall. my head felt really heavy and the room started spinning really quickly. I lost control of my body and collapsed to the tiles. I tried to get up, but my head just kept crashing back onto the tiles. I was able to call out to Cam and he came in quite calm. Cameron thought I was just passing out and went to get me some electrolytes to drink. I vomited a couple of times. This lasted for about 20 minutes, yet I trusted that I was fainting and just tried to stay calm. Neither of us clicked that I was having a stroke. Even though I was qualified in first aid, I wasn’t really thinking about what I had learned at the time. I didn’t lose consciousness or anything.
After some time I managed to pick myself up and go back to bed. My neck was still stiff and my right arm was a little stiff as well. My parents were in Melbourne at the time and we were due to meet them for lunch at Westfield in Doncaster where we were going to do a bit of Christmas shopping. I rang mum to tell her that we might be a bit late. She asked if I was alright because I sounded really spaced out, slow and slurry. I just told her I fainted and went back to sleep for half an hour.
I woke up still feeling groggy, packed my bag because I was due to fly back to hobart that night and got ready to head to the shopping centre. I remember when we got there feeling really disorientated especially around all the stairs and my senses like my hearing felt really heightened. We shopped around for a bit, then met mum and dad for lunch. Mum again asked if I was ok and told me I looked washed out. I ate a big lunch so we all assumed that I was okay. We kept going on with our day and filled it in until we had to go to the airport. It wasn’t until I sat down at the gate to wait for my plane until it triggered that something was wrong. I got out a pen to write down a PT workout for one of my clients and began to write. I couldn’t write. I mean it was just scribble on the page. No matter how hard I tried to form a letter, I just couldn’t do it. I remember struggling to grip the pen in my fingers. My head was throbbing. I took some panadol and boarded the plane. I slept the whole trip. My nan greeted me at the airport and I remember her telling me I didn’t look very well. I knew I had a doctors appointment the following day to get the implanon inserted in my arm, so I would mention it to her then.
I went to the doctor the next day in the morning. She inserted my implanon and I mentioned to her about my fainting episode the day before and that I couldn’t write. She asked me to write my name and I couldn’t . She referred me to get a CAT Scan that day. Less than two hours after my scan, she called me back in urgently. She told me that there were three lesions on my brain and they could be three things: 1. stroke, 2. tumours, 3. MS. I broke down. I called my nan and asked her to knock off work as I needed to go to hospital straight away. After a series of testing and pin cushioning I was given the diagnosis that I had one major stroke and two mini strokes in the cerebellum part of my brain. The major stroke effected my motor skills on my right side, mainly my right arm and the mini strokes effected my speech and peripheral vision, but not too much to be noticeable to those that didn’t know me. The cause of my stroke was unknown and still remains unknown today. It was just one of those freaky things. They narrowed it down to 3 possible causes, but couldn’t work out which it could’ve been or if it was a combination of all three. One. A small hole in the heart; to. I was on the pill at the time; three. I was found to have a genetic blood clotting disorder called Factor V Leiden .
I am a very independent person. As far as recovery went, I had a bit of work to do. I was due to move to Melbourne in February 2012 to begin my Graduate Diploma in Teaching, so I really wanted to be able to write again to take notes. I hated the feeling of losing control over my body and the only way I knew how to get my strength back was to pour everything I had into exercise and strict eating. I had a little bit of occupational therapy to regain my fine motor skills, but I ended up finishing up and doing my own thing. I taught myself to crochet for therapy and together with my nan, ended up making a large granny square blanket. I struggled to do things like write, hold an oven tray, put bobby pins in my hair, pour a glass of water from a jug and anything intricate. It took some patience to retrain my brain. I had a note taker for my first semester of uni, however by second semester I made myself take my own notes. I was determined to be able to write legibly before I began my first year of teaching, which I did. The one thing I underestimated was the fatigue. I got really tired easily, especially after having to concentrate for long periods of time. Six years on, I would say my fine motor skills are 85 % recovered. I still struggle with delicate tasks, but you wouldn’t know. It is only me that notices. For example doing up buttons on a babys grow suit or doing up zips is really difficult for me or colouring in an adult colouring book. I still get fatigued, but I can’t tell if it is a side effect from my stroke, a side effect from my blindness after my brain tumours or sleep deprivation from being pregnant and running around after a toddler. Probably a combination of all three. I definitely don’t have the stamina I used to these days. You won’t see me stay up to all hours of a night drinking and partying anymore. Those days are over. When I am tired, I notice myself slurring a few words and have trouble pronouncing some words. However this is barely noticeable. It is only me that notices. After I had my stroke I was prohibited from driving for six weeks due to my peripheral vision. However my vision recovered and I was able to drive again after the six week period. I felt very lucky about this.
Effects of my stroke on my mental health
As mentioned before, the only way I knew how to recover from the stroke was to regain my power back over my body. I didn’t do it a healthy way. After having the stroke my self esteem took a hit and my perception of my body image was at an all time low. I delved into exercise and would do so for a couple of hours a day. I put myself on a low calorie fasting diet. The weight poured off me and I felt like I was becoming really strong again. I was lifting ridiculous weights. Although I was in the best shape of my life, I was miserable. I would cry over pigging out on one too many Tim Tams and I was very hot headed, argumentative, sensitive and irrational. I didn’t realise that mood swings were also a side effect of stroke. This was a vicious six months and it took it’s toll. Cameron and I ended up splitting up and it took that for me to realise that there was something seriously wrong. I ended up seeing a psychologist and just taking a step back. Cameron was very understanding and we ended up sorting things out and talking a lot more as I was working through my issues. I really wanted to try and work on having a positive body image, for if I was to be teaching primary school aged children, they needed a positive role model. Once I realised this, I was able to be kinder to myself and just try and enjoy life and appreciate what my body is very capable of. I remember when I lost my vision 4 years later, mum found a photo of me in my bikini from a photo shoot I won after my stroke and told me how rocking my body was. I burst into tears because I hated the fact that I hated my body for so long and now I can hardly see it in the mirror to really appreciate it for what it can do. The scars I have are scars of strength and I am proud of that. What it looks like doesn’t really come into play now. While I still wish I could change a few things every now and then, I think this is quite normal for most women on this planet. Now with limited vision, I worry more about if my mascara has smudged or if my eyeliner is even. I still enjoy taking pride in myself and putting my best foot forward when I go out.
Despite all my insecurities, I was able to hide them pretty well. I managed to excel in my teaching course and ranked in the top 5% in my cohort. By the end of the year I landed my first teaching job. There was no looking back.
I managed to join a boot camp in 2013 where I made some great friends. I ended up training to complete my first half marathon and trained for it in a healthy way. I might have been carrying a few more kilos, but completing that race was probably one of my favourite memories and it gave me that sense I do have power over my body and can do anything I set my mind to. The experience of the stroke and the adversity that came with it did give me the strength to have a moving forward mindset for when I lost my vision suddenly. Independence is such an important privilege to have in life and when it is torn away, you need to be head strong, stubborn and assertive to your needs to get it back. Sometimes I think it is harder for loved ones watching you go through something like a major health scare, because in that pursuit for independence, they can often feel as though they are getting pushed away when you snap or get frustrated. When you are going through the motions and dealing with adversity it is very hard to communicate with loved ones about your needs when you are so up and down and don’t know yourself what you are feeling or what they mean. This is a whole post for another day, so stay tuned…
I have to say, the time I had my stroke really cemented my relationship with Cameron who is now my husband. We had only been going out for a few months. I gave him the option to leave as I didn’t want to be a burden on him. He didn’t. He flew down to be by my bedside in hospital straight away and that was the day I fell in love with him. Through all our ups and downs, this man is my pillar of strength. I have never had to question his loyalty to me. This is my favourite quality about him.
For more information about Stroke, visit the Stroke Foundation website here.