Kelly Lewis My stroke story

I was in the car (with my 2 children aged 4 and 6yrs) when I experienced a feeling similar to that of being hit over the head with a cricket bat.  I immediately pulled over and phoned my husband to collect me.  I opted to remove myself from the car, knowing it was not safe for me to be anywhere near a steering wheel - as soon as I stood or made a movement I was violently ill and I couldn’t open my eyes.  

When my husband arrived he drove me home, as we were passing a doctors surgery I asked him to stop and get checked out. The doctor thought I was suffering a migraine and unfortunately sent me home with some wafers for pain relief.

I went straight to bed but after a few hours I had deteriorated and was now totally incomprehensible and I couldn’t get up. I asked my husband to phone ‘DR to your Door’ as I knew something was very wrong.  Thankfully when they arrived they phoned for an ambulance immediately, suspecting a brain bleed. 

I had experienced a cerebral hemorrhage due to an AVM - I was thirty-eight.  

The stroke affected my balance and walking, and floored me emotionally. I was in a coma for two weeks in ICU and I had a tracheostomy tube fitted as I had lost my gag reflex. Once awake from the coma I was unable to eat or to communicate verbally.  I vomited daily for about ten months, and lying in bed the room would spin - very similar to having a really bad handover! 

My physical effects fortunately were short term about 12 months, and my speech returned to normal over time - Those letter L's were difficult to pronounce in the early days.  I had one year off work, and in time I improved with an immense amount of persistence, rehabilitation and therapy. 

The first four months I was in the hospital rehab ward. My therapy was mainly walking, stepping over obstacles and negotiating 3 stairs with assistance.  I did seated arm exercises, followed by increasing motor skills, peg exercises and balancing on one foot.  As I got better I was able to perform more household rehab - like peeling potatoes and making the kids lunches, after a few months I was even able to vacuum the floor!

After twelve months of rehab I was able to regain my balance and walk well, with my motor functions restored. I am now only left with nerve damage from the neck down, plus the odd dizzy spell. When I am tired I look like I am a little bit drunk as a get a tad wobbly. The effects of my stroke are mostly hidden, I know they’re there, but you can’t tell. I suffer from fatigue and I can’t do what I used to - I get so drained.  Emotionally it’s been a really tough ride, but fortunately I have remained positive. 

Persistence and goal setting were a huge help with my rehab and I found trying to incorporate my rehab into my daily life helped too. I did tasks such as brushing my dog, peeling potatoes whilst hubby cooked tea. I used to balance on one foot while listening to the kids read a book to me. Other simple tasks such as buttering bread for sandwiches, collecting eggs from the chickens and a short walk in the backyard navigating uneven surfaces. My walks built up to a walking down my street with my husband, then finally a one kilometre walk with my kids to school. 

The most significant part in keeping me motivated throughout my recovery are my family. Early on my kids would ask for a sandwich, it was really challenging for me to start with, but as the weeks progressed spreading that Nutella got easier and easier! It would have been easy to come home from hospital and stagnate, but the kids were always wanting my attention and interacting with them through board games and puzzles really kept my mind and body active. My husband never let me skip my daily walks even though at times I so desperately wanted too. He helped me to build up by walking a few extra meters a day.

I was the full-time worker at the time of my stroke and my husband a stay at home Dad, so fortunately not a lot changed in my kid’s world, except Mummy wasn't there with them. My husband was able to keep things as normal as possible for them, and was a tower of strength for all of us. 

I sometimes think the ‘survivor’ actually can have it easier - we put all our focus on each little moment, each minute, just to get through the day. Whereas my family had the more big picture stress of watching their Mother and wife almost die and then having to keep the wheels of life in motion. Bills still need to be paid, the house needs to be cleaned and kids and pets fed.  Your partner becomes the sole carer - without my husband’s strength my recovery would not have been as good as it is.  

When I was finally well enough to cope with being at home by myself, my husband was able to begin working and stepped into the role of provider. I was able to begin working again one year after my stroke. Getting back to work I staggered the time – or I would have been a puddle on the floor, struck down by fatigue. I started with two days a week, then slowly built up to three. I tried four days after two years but I was way too tired. I have found my balance, and three days is perfect. 

I am so thankful that I survived and I am able to see my kids grow up and enjoy life with my husband. I am grateful for every minute.