The journey of finding myself again

By Rachael

My husband and I have three children, two of which have special needs. My youngest (2 at the time of my stroke) has a rare neurological syndrome and had spent many weeks in hospital. During this time, I was sleeping next to him in a fold out bed and had been having excruciating headaches and neck pain for days. I assumed it was a migraine due to stress.

One morning, as I sat next to my son in hospital, I suddenly felt a very strange cold feeling in my right eye and right side of my mouth. I rapidly lost all sensation to the right side of my body. I remember using my left hand to touch my leg and not feeling a thing. I wondered whether I had pinched a nerve in my back.

At that moment my son's nurse entered the room and I told her what was happening. She immediately came over to assess me and told me I was having stroke symptoms. I thought she was crazy, 34-year-olds don't have strokes! But she was insistent that I needed immediate help. Because we were in a children's hospital the doctors on the ward weren't allowed to assist. So, the nurse told me there were two options; call a code blue or call an ambulance.

I chose the ambulance option, as we felt with a code blue a team of people would descend on the room which could be scary for my son. By the time the ambulance arrived I could walk again, and I was starting to feel very foolish, and terrible for leaving my two-year-old alone.

I arrived at hospital around 10:30am and was seen immediately by a doctor who told me I was most likely just having a migraine. I was told to go and wait in the entry area of ED. After a few hours of waiting in a plastic chair with an excruciating headache I asked if I could leave. I assumed my condition wasn't serious as I hadn't been admitted to the main area of ED and I wanted to get back to my son at the children's hospital. A doctor came out to talk to me and convinced me to stay for a CT scan. I was still in excruciating pain but couldn't believe I was now having a brain scan for a migraine - thank goodness I stayed.

After the scan I waited for about seven hours in the waiting area. I was in a lot of pain but figured I had come this far; I should stay around for the results. Suddenly I got a phone call from a doctor telling me they had found an abnormal result on my brain scan and to come back to hospital. I told her I was still in the waiting room, and she immediately came out and took me to a small room with a crowd of medical professionals. By this point I was in tears, I knew something bad had happened. I will never forget the nurse who sat with me and held my hand.

I was told that I had bilateral vertebral artery dissection and that I was at high risk of having a stroke. The theory was that I had likely had a TIA and I was given aspirin. My husband and parents raced to the hospital. Around 9pm that night I was finally given a bed.

The next day I was allowed home on the condition I return immediately with any stroke symptoms. At this stage we still didn't know if I had had a stroke as it didn't show up on my CT scan. But I was having trouble walking, my right hand was shaky, and I was having trouble finding the right words to say. My symptoms were brushed off at the time, I was told they were likely temporary, and I was sent home without any therapy or rehab referrals.

A few days later I was taken back to hospital by ambulance with stroke symptoms. An MRI showed a small ischemic cerebellum stroke. I spent a few days in hospital, and I was told my symptoms would probably get better within the next three months and again I was discharged without a treatment plan.

At home I was still having trouble walking so I booked myself into a physiotherapist. My physio was great but wasn't specialised in neurophysiology and was quite shocked I hadn't received a physio plan at discharge. I needed crutches to walk, and my hand was so shaky I needed my Mum to cut up my food for me. The physio called the neuro department at the hospital and gave me exercises to do until I finally attended the rehab centre as an outpatient - over three months later.

I believe my symptoms and stroke deficits were overlooked because of my age and the fact that my stroke was small.

Once I got treatment it was very helpful. I saw a physio and an OT and I went to a group for managing neuro fatigue, one of my worst symptoms.

My right sided ataxia improved, and I was able to come off crutches after about five months - though I still need them occasionally.

After three months and an improved CT scan of my arteries I was able to come off the strong blood thinners I was on, but I will take asprin for the rest of my life.

While my stroke was small it has had a huge impact on myself and my family. I went from being independent to needing to depend on others and at times being unable to look after my own children.

Suddenly we were in a household with three family members needing significant care. There were times when my son and I were both in different hospitals at the same time.

I was on crutches which made it very difficult to walk my kids to school, cook, or do housework and fatigue meant I had less energy to do things with my children. I'm still struggling with getting back to driving which has put a lot of pressure on my husband. I had quite a few setbacks due to illness and stress - which were so frustrating. And the worst thing was not knowing when - or if - I would regain full function and navigating how to explain that to our children.

I have been through all the emotions since my stroke. Anger, frustration, sadness, guilt, loneliness, and of course huge anxiety that it could happen again. I felt very isolated as I didn't know anyone who had had a stroke at my age, and I was also unable to get back to my daily activities for a long time. Suddenly my life drastically changed. Grief was a big one for me too. I grieved a lot for the things I used to be able to do and the person I used to be. You don't realise how important things like health and independence are until they are taken away.

But I also feel profound gratitude and appreciation for the little things. I have a different perspective on life and how precious it is, and how easily it can be taken away. Each day I remember how lucky I am to be here with my beautiful family. I remember how lucky I am to have recovered so well - because this is not the case for everyone.

I would like to thank my husband and my Mum who have always supported me, but particularly since my stroke. I would not have recovered as well as I have without their love and support.

We are all survivors in our different ways, and we all face life with such compassion, love and resilience. We are thriving – and I am one proud mother, daughter and wife.

Follow Rachael's journey here in Instagram.