We did not realise I was having a stroke

Toni – My strokes and my recovery

I had my stroke on a Wednesday in September 2013 at the age of 46.  We didn’t realise I was having a stroke. 

My husband and I were on holiday and I'd woken up to feed my dog around 6am. I went to the toilet and fell against the wall as I was walking out. I had an experience of looking down on myself from the ceiling. I called my husband to help me back to bed and I felt nauseous and had a small headache. I thought I must have been coming down with a bug - it was school holidays and I was a teacher which is a prime time to get sick! I slept most of the day and I felt dizzy the few times I did get up.  My head felt too heavy for my neck.

The next day I drove us home as I still felt a bit nauseous.  As someone who has extreme motion sickness, I thought being a passenger would only make it worse. 

On the Friday, I saw my Osteopath who did a couple of basic checks and gave me a gentle treatment which made me feel a bit better. They told me if I didn’t improve to go and see my doctor. I slept most of Sunday and my husband said he wanted to take me to Emergency. Unfortunately I turned him down saying "Don’t be silly, it should only be used for emergencies. If I'm no better I'll see my doctor on Monday". 

On Monday I went to my doctor and the tests showed weakness and loss of sensation. They rang around to get me in for an MRI with the earliest being the following day. Finally I had an MRI which confirmed a stroke.

Since then I've had three TIAs (mini strokes) and have been assessed as never being able to work. Sensory overload and fatigue are major issues. When they kick in I have trouble with my speech and walking. My maths, spelling and reading have all been affected.  

My challenges are invisible.  You wouldn’t know anything has happened to look at me, and people often don’t believe I have suffered multiple strokes. I consider myself extremely lucky as I know I could have been much worse off. I have gradually retaught myself many of the things I 'forgot' how to do. 

What are the three most important things in your life since your stroke? 

Before my stroke, my family was the most important thing in my life and it’s remained my number one priority. My children were 16, 19, and 21 so they were quite self-sufficient, but it was still hard. My youngest was in her final years at high school and I wasn’t able to support her as much as I would have liked. 

My eldest daughter got married in December 2016.  I really struggled with not being able to be as helpful as I’d always imagined, but I was happy I managed to make her cake. The reception was really hard, but I blocked out the week after the wedding to help recover. 

My son just thinks I don’t like his music when I ask him to turn it down (he may be right!) and just like anyone else they can struggle to understand how I get affected one minute but not another. 

My husband, Nick, has been my rock and I would not have ‘coped’ like I have without him. Early on I was so worried about my future. I remember saying to him if he wanted to leave I totally understood. In my head all I could see was him being my carer for possibly the next 30 to 40 years and I didn’t want to burden him with that. Thankfully I worked through that and, whilst he is my carer, first and foremost he is my husband and we love, depend on and support each other.

When something life changing happens it changes the dynamics of so many things. The effect of my stroke on some friends was upsetting. Some people I had thought were close friends gradually drifted away. I think it was difficult for them to see their once busy, social friend reduced to being reliant on them for any social activity. I am forever grateful for the friends who have travelled this journey with me. They’re the ones who have let me cry, let me sleep, encouraged me, and most importantly recognised that despite the changes my stroke has inflicted I am still me. The support of these people has been so important and I am forever grateful they are in my life.

Walking, particularly bush walking, has come to mean a lot to me. In a way it has become a symbol for what I can achieve. My dream is to complete the Maria Island 4-day hike. Last year I participated in a 6km Easter walk called The Tour De Tarwin, raising money for the local Surf Life Saving Club. It was a real challenge due to the number of particpants so I felt a real sense of achievement when I finished. And yes, I shed a few tears.  We also went to Western Australia and did some walks around the Kalbarri NP. Walking poles are my friends and each walk is a step closer to my goal.

How do you manage your sensory challenges? 

I decided to see what research I could participate in and I was accepted into a project that looked at how to manage fatigue after stroke. I was lucky because part of the research involved me meeting with a neuropsychologist for ten sessions. I was never admitted to hospital or had any rehab sessions so this was my first encounter with any form of rehab or information. After completing questionnaires she told me I hadn’t given my brain a chance to rest since having my stroke. I’d thought if I lay on the couch with the TV on I was resting, but she told me it meant my brain was still working and due to my sensory overload issues it was working overtime. From then on it was about taking a five to ten minute break out of every hour and sitting in silence and breathing. Like any meditation, it took a bit of practice, and still does, but it was so helpful. When friends visit they know I may disappear for a few minutes just to give my brain a break and when out, particularly if shopping, I’ve been known to go to the toilet just so I can sit, block my ears and have no distractions. 

Planning is a big part of managing my ‘symptoms’. I know I can only do one activity a day. Monday mornings I do Pilates and I usually come home and sleep for an hour or two and then I’m plonked on the couch for the rest of day. My two hourly art lesson means that whole day is full as I need to recover from that. We know that shopping centres really affect me so we plan which shops to visit and work out when would be a good time to have a coffee break. I carry small foam earplugs with me that way I can pop them in and block out some noise. I use these if I go the cinemas or a restaurant. 

Talking on the phone can be a real issue. I no longer properly process what the other person is saying and the concentration can cause me to then struggle to find the words I want to say. If I know I have to make a call, I’ll write myself some dot points and depending on the purpose of the call I sometimes ask the person to email me what we discussed or ask people to send me a text.

Apart from noise and lights, my sensory overload issues have also been brought on by things like a car driving past, the wind blowing and climbing through a fence so I no longer walk by myself. Unfortunately, sensory overload can happen at any time but at least we now know what it is and don’t get so worried by the result.

Are you back to driving? What challenges have you faced? 

One of the biggest impacts of the sensory overload is how it affects my independence. Though I have my driver’s licence it is extremely rare I drive. While I may be able to get to a destination, due to my sensory overload issues, I am unlikely to be able to drive home. Sensory overload can cause me left side neglect, which means I sometimes don’t see properly out of my left eye. This was apparent the day I reversed my car into the garage and didn’t ‘see’ my husband’s car parked in its usual spot. Luckily it was a very minor scrape but it definitely gave me a fright.  After a discussion with my doctor, we changed my car to one that has a reversing camera, lane departure warning and other safety features. I sometimes drive to my regular Thursday night cardio session but my youngest daughter comes with me. She jokes it’s like she’s now the supervising driver and I’m on my ‘L’s’ and she always has to drive us home. I keep the radio on a very low volume and we try to keep conversation to a minimum. If we get chatting I sometimes ‘forget’ to indicate or turn the windscreen wipers on instead. I don’t drive on busy roads, being on a freeway with cars on either side of me affects me as a passenger so being the driver is definitely out.  If I know I’m going to be driving anywhere I always make sure to rest beforehand and I’m very honest about how I am feeling as to whether I’m capable of driving or not - any hesitation and I’m in the passenger seat. 

How do you think the stroke had affected you emotionally? 

From the moment I was told I’d had a stroke I was calm and accepting of it. I had a mindset that my outcome could have been so different, but here I was still able to function and enjoy my life. Yes there have been tears, lots of tears at times, but on those bad days I just think of Annie and the lyrics “The sun will come out tomorrow”. It’s probably become my mantra. 

In my previous life I was constantly making decisions, but now I find it quite hard. I’ll never forget standing in Coles, in tears, because I couldn’t decide if I should buy some bacon for breakfast or not. I’ve become better at recognising I am getting to that stage and can say to my husband I’m going to start crying and we can walk away from the situation until I’m composed or he can make the decision for us. 

It is interesting to see how having a stroke has affected my sense of humour. I quite often don’t ‘get’ jokes and need them explained to me. I also often misunderstand the intention with which something is being said. This has been the cause of more tears as I can see how my misunderstanding has upset my husband and it is unintentional.

What advice would you give to others about living well after stroke?

Accepting you have a new ‘normal’ is a big part of living well and moving forward after a stroke. But this doesn’t mean accepting things the way they are, of course you strive for improvement in whatever deficits you’ve been left with. I have moved on from thinking ‘I used to be able to do this’ to knowing I may need to rest more often, or that I need to do things differently. This has helped me both emotionally and mentally. Identifying and working within my limitations has helped me realise it’s okay to redefine your capabilities.  Just as stroke may have taken away or reduced some skills, they can be improved with time. 

If possible find something to do that you enjoy so your time isn’t just about your stroke. For me it’s been starting art lessons. I’ve always enjoyed drawing and have loved getting reacquainted with my pencils though it has been interesting to see how my skills and perception have changed. I now have problems differentiating between different shades of green. My first lesson the art teacher gave me a photo of a zebra to draw to see how I went with the placement and sizing of the stripes. Looking at them did my head in and caused sensory overload. 

I also think it’s important to allow yourself to feel and acknowledge the range of emotions you are going to have. Know it’s okay to cry and feel down about your predicament, but recognise that it is one moment. If those moments are becoming overwhelming you know you need to talk to your GP or a psychologist. Asking for help, for whatever situation, can be hard but I’ve found it can make me feel more in control and independent.

I recently had my 50th birthday and ended up splitting my celebrations into two separate nights; one for my close friends and one for my family members. I knew it was the only way I would be able to cope with the number of guests and enjoy myself.

I am now looking forward to reaching my 60th. I have learned through my strokes - which I like to call the ‘little bastards’ - that growing older is a privilege not a guarantee.