EnableMe | enableme - stroke recovery and support

Having a stroke was an extremely scary experience. One Sunday morning, within seconds, I went from being a very fit, healthy and active 38 year old woman to being half-paralysed on my hallway floor, unable to move my left side at all.

Just four days after my 38 birthday, I suffered an ischaemic stroke, cutting off oxygen to, and damaging, part of the right side of my brain. I had no risk factors for a stroke, no family history, I exercised six times a week, ate well, didn’t drink, didn’t smoke, had low blood pressure. I was extremely independent and enjoyed challenging myself mentally and physically. So, to find myself so suddenly incapacitated and with no certainty around my recovery was very confronting.

Following my stroke, I found myself dealing with a lot of fear. When I was in rehab, I researched strokes, recovery, what the future might look like. In some ways, this was helpful to build up my knowledge and understanding, but in other ways, it created a lot of fear. I had to remind myself that I wasn’t just a statistic and that my experience of stroke and my recovery was individual to me.

When I got home from rehab, I remember the eerie silence of suddenly being alone, away from the noise of a hospital with people walking the corridors, beeps of machines, televisions on in different rooms, doors opening and closing. Suddenly, I felt the fear of being away from emergency buttons in every room I went to, being away from medical staff constantly checking on me. “What if it happens again?” I thought.

For a long time, I wouldn’t walk anywhere in my house without my mobile phone in my hand or in my pocket. If I went for a walk outside and forgot my phone, I would feel panic and would have to get home as soon as possible in case anything happened to me while I was out and I couldn’t contact anyone.

I got doctors to run tests to try and find out why the stroke had happened. If I could understand why it had happened, maybe I could do something to prevent it happening again. They checked my arteries, scanned to see if I had a hole in my heart, looked into whether I was suffered from atrial fibrillation or had familial hypercholesterolemia but they found no answers to alleviate my fears and told me that more often than not, no specific reason would be found for someone suffering a stroke.

I have always been an overthinker and found my mind full of thoughts at the beginning of my recovery. “Who will I be after this? Will I get back to who I was? Will my body ever move with ease again? Will this happen again?” Every time I would feel any numbness or a tingling sensation or had a headache, I would worry that something was going to happen to me and find myself on alert to make sure there were people around me who would be able to help if anything happened.

I realised that having a stroke was something I would have to learn to live with but I decided that I wasn’t going to let it define me and I was determined to find a way to overcome the fear I felt around why it had happened and the uncertainty of whether it could happen again. Living with fear meant I wasn’t truly living and I wanted to live the rest of my life not just exist through it.

The first strategy I used to help me deal with my fear was to bring awareness to the feeling and use self-compassion. I understood that feeling fear was a completely valid emotion to be experiencing. It was such an uncomfortable feeling for someone who’s always been so capable and independent and so I had to be gentle and compassionate with myself for feeling this way. I understood that it would be a journey to learn to live without fear.

The longer my recovery went on, the greater the space became between me experiencing fear. Each “first” after my stroke would often bring up some fear; the first time I went somewhere without my mobile phone, the first time I drove alone again, the first time I flew overseas. As I moved through each “first” and the fear it brought with it, I would be gentle and kind towards myself. And each time, the fear would ease and lose some of its power over me.

The next thing I learned to do was to control the controllables. I knew that maybe I couldn’t control whether I would have a second stroke but I could take control of other aspects of life to manage my fears. I continued to live a healthy life, moving my body regularly, eating well and learning to manage stress. I learned various breath work and meditation practices to manage any fear that arose. I worked hard physically and mentally to retrain my brain to move my body safely so I wasn’t at risk of falling and could gain back my independence.

I also controlled other practical things to help me feel safer. Initially, if I went out alone, I would let people know where I was going and approximately what time I might be back and would check in with them to let them know I was safe. When travelling overseas, I took out the appropriate travel insurance so I would be covered in case of having another stroke overseas.

It’s been just over six years now and during that time I have explored and experienced different types of therapy and support to help me. I found a local young stroke survivor group where I could meet up with other young stroke survivors, I’ve seen a psychologist for talk therapy, I’ve experienced somatic therapy to help me connect with my body and used movement to help move emotions. I’ve learned how my thoughts trigger my emotions and how to bring awareness to my thoughts, to be able to challenge any unhelpful thoughts before they become overwhelming emotions.

I’ve recognised that fear is a future-based emotion, worrying about something that “might” happen. Through learning mindfulness, practicing being present and being grateful for each moment as I’m experiencing it, there’s not room for the fear of things that “might” be.

It has been quite a journey. These are all things that I continue to work on but I have learned to live without the fear and am able to fully live, experience and enjoy life.

If you’re feeling any fear after a stroke, please know that how you’re feeling is completely valid and there is a way through. I would love to hear from anyone with other ways they have overcome fear following a stroke.

Thank you so much for this. I could relate to so many of your experiences as I also became so fearful after my TIA that I would have a full blown stroke. I have practised many of the things you did and decided to not let fear or anxiety control my life. I tell myself to “do it afraid” but still do it and don’t let fear win. Some days are still a struggle but as more time goes on, it gets easier. Issues were picked up with my heart and I have been diagnosed with atrial fibrillation so that causes me health anxiety at times. However, I heard something that I found really helpful - “just because something could happen doesn’t mean it will happen”. Fear and anxiety want to trick us into believing something will happen. Why waste our lives worrying about something that may never happen? I try to live grateful every day for the second chance I’ve been given. Wishing you all the best on this journey we are on.

Thanks for sharing Deb. Sounds like you're in a great headspace and managing any fear and anxiety that arise. Wishing you all the best with continuing to manage this in the future.

Thank you for your thoughtful share. I identified with a lot of it having had a CVA at 37 - just over 40 years ago now. A malformation in my brainstem bled and I was told I was lucky to survive. Three years later I gave birth to my daughter. It was a scary time but I ended up calling it my stroke of good luck. Recovery is hard work and we never see the world the same again. It gave me constant gratitude for what I have and for the insights and increased compassion it gave me. All the very best.

Thanks for sharing Anne. So glad you were able to find the silver linings in life after your stroke and got to become a mum. I hope all is well with you now.

You have nothing to fear , it's been nearly 6 years and still am paralyzed down the right side3 from head to toe , the real headaches are the NDIS hurdle , sure they want to help then 6 months later they try to cut your funding , really nice off them , believe me you haven't seen such a poorly run origination till you have to get om it , 4 years before they accepted me , even my specialist wrote me of as never to walk again . Good luck you will need it .

Hi Gary,

So sorry to hear of the ongoing issues you've been having with the NDIS. Recovery after a stroke alone is difficult. I hope you're able to receive the funding and support you need and have good friends and family around you.

Thank you for sharing your experience, Cath. I also had schaemic stroke and was unable to move my left side at all .Doctor also can't figure out what exactly caused the stroke but doctor said one issue may be related my post-stroke. I still deal with my fear to have second stroke.

Hi Deb,

Thank you for sharing below with us.

“just because something could happen doesn’t mean it will happen”. Fear and anxiety want to trick us into believing something will happen. Why waste our lives worrying about something that may never happen?