My name is Rose. I’m 27 years old. I had my stroke when I was three years old. Today I live in Brisbane with my partner Nige, we have been dating for three years.
Over the past couple of years I have learned a great deal about myself, my self-confidence has taken a dive and is growing now again. It didn’t hit me until last year that I had actually had a stroke. Boy did it hit me hard.
Being so young I don’t remember much about what happened. The one memory I do have is going in the ambulance and the sirens being so loud I couldn’t stand it. It hurt so much. When you have a stroke your hearing can become very sensitive, this was definitely the case for me. My mum tells me I had my stroke early morning in March 1992. I was crying and she tried to get me to settle back into bed. Eventually she picked me up to stand and I fell into a heap and she noticed my face had fallen to one side. Off to the paediatric intensive care unit we went. I was paralysed for three days and had every scan under the sun. After five days in hospital I was home, and my parents taught me how to walk, talk, and even eat all over again. My left arm, which had been paralysed by the stroke, sat behind my back and had to be brought forward constantly. I did hydrotherapy in a pool, lots of physio and lots of rehabilitation at home, thanks to my awesome and always supportive family.
In primary school I guess I knew I was different — the kids at school definitely made sure of that. I have this vivid memory from early winter in grade three. I was pigeon toed and a girl behind me said to a boy I had a crush on, “Why does Rose run like such a spastic?” God did that comment ruin me! I kept going though, I have always tried to.
My feet never behaved. When I reached puberty I really started to notice these cramps that took over my left foot. Later in life I found out that this is dystonia, an over active muscle – that can’t be controlled. It turns out I have three of them in my left leg. High school was not as bad with the comments and bullying. My foot however continued to prove difficult. I started to really notice it badly when I was 19 years old. This was around the time I got sent for emergency electroencephalogram (EEG) and diagnosed with complex partial seizures. The medication I was prescribed knocked me out, and even made me fall asleep at work. I couldn’t drink or drive, which totally rocked my world as a socially active 19 year old. The medication also impacted my mental health and I suffered bad depression. I was also diagnosed with epilepsy which didn’t help my situation.
This year I have been diagnosed with Trigeminal Neuralgia. Anyone who has this awful condition will understand how very painful it is. When I am having a flare up, which seems to be every two to three months, I feel like a needle is getting pushed through my jaw from the back of my head. It is really painful, there is no cure and I will have it all my life. I’m only 27 and I don’t even know how to begin to deal with this.
This year 2016, was this year I really started to fully understand the impact my stroke has had and will continue to have on me. I now know that my foot will never be ok. My epilepsy may never go away and my face may get worse. It has taken me a long time to realise and really process that. I’m much more open about my stroke now and I have realised that things aren’t going to change. This is how my stroke affected my body and while there are things I can do to help relieve pain and not feel so fatigued, I have to accept that sometimes I do have to sleep more than others and miss out on things. That’s life.
This post feels fairly raw to me – I’m not going to sugar coat things. I am a fairly happy person but I certainly feel sometimes that my life is revolved around my medical life and how I’m feeling. Sometimes I have enough ‘fuel in the tank’ sometimes I don’t. I still try, I don’t often give up, but I know that life is tough. I’ve been fighting for a while and I’m not going to give up any time soon!