- Experts by Experience
Brain Injury Awareness Week, 19-25 May 2025, with the Cheshire and Wirral Partnership NHS Foundation Trust Acquired Brain Injury Service.
Throughout the week people with lived experience of Acquired Brain Injury will be sharing a variety of content, including written pieces, poems, and videos.
You can access that content by clicking the drop down menus below.
Expert by Experience Donna shares her personal story of how an ordinary day turned into a life altering experience.
26th December 2023 At 2200 hours
The day my life changed, it was a normal day I was spending the day with my bestie having some food/drinks. It was a nice day but I left early as I had a bit of a headache.
When I got home I did some cleaning and then went for a walk with my dog, whilst walking the dog I had a feeling in my head that felt like an explosion and a weird feeling in my back of my neck, which is called a Thunderclap headache. I managed to get into my flat, then I was being sick, I thought it was just a bad migraine so I went to bed, I couldn’t sleep because of the pain so I went to A&E and had a CT scan. Then I was told that I had a subarachnoid brain haemorrhage then I was rushed to Walton hospital.
At Walton hospital I had an MRI scan that revealed I had two Brain aneurysms and one had burst. They told me what was happening and I went for surgery the next day, it all went well, while recovering from the surgery the doctors had a discussion and decided to keep me in and fix the other aneurysm before I went home.
When I got home I struggled with depression and anxiety also had a fear of death. I also suffered severe fatigue, luckily I was referred to the ABI in Chester and also talking therapy’s, which without their help I wouldn’t be able to do what I am doing now. I am back at work in the same role but in a smaller capacity so I do Hybrid working. The ABI has helped me so much the whole team have been fantastic and help me recover and return to work in a safe manner. The ABI has been a great support for me and my recovery. During this time I have realised that I am still Donna but a different version of Donna and I have accepted that and it’s not a bad thing because we become different versions of ourselves though our life while we are growing up, we become different version of ourselves as we grow older and that’s ok.
I would also like to say the ABI is a fantastic example of great services that really do make a difference from top to bottom they are all very helpful and reliable. Without their help I honestly don’t know where I would be mentally and physically.
Donna Spinks
Expert by Experience Lee-Christina reflects on the journey of recovery, and shares her experience with uncertainty and fear that came in the earlier days.
A good day
There are always good days, there are days when we feel nothing has changed and days were others around us notice changes however small they are, it’s just that sometimes we have to really think about things and see things for what they are, really try and find those little things.
Early days - my good day December 23
Waking up, whilst feeling weaker, I could take my medication and be able to get up and dressed with support. I used walking aids in the hospital and house and I would check to see if I had people coming to offer physio or support.
I would have something to eat but would rest a lot and sleep , listening to the needs of my body. It felt like survival and days often felt the same. My struggle with pain and stroke fatigue a constant reminder. I won’t say it was easy because the days weren’t.
There were times I felt I had lost myself, I felt vulnerable, I missed the life I had. I wanted more, wasn’t sure what days would hold , I couldn’t see past the next day. I listened to my support officers from the Acquired Brain Injury Team, I took their advice even when I wasn’t ready to compromise what I wanted, but I listened to them and importantly I listened to my body.
A current good day - 16 months later
I get myself up. I take my time and get myself dressed and make sure I take the medicine I need. I still have things planned out and I use day and time boxes as visual plans to keep me on track.
Medical appointments have trailed off, but the Acquired Brain Injury Team are there. I have accepted the changes I must face and whilst I don’t necessarily want them, I have learnt to accept them and understand the key roles they are playing in my recovery. We all have goals, some small and some bigger. Some we know are achievable and others we long for but know they are either a long way off or that we appreciate may never come.
Mine, well mine was to return to my day job. A job I can do remotely due to changes to my mobility and which cater to my identity as me and as a stroke survivor and the challenges and changes I face. I have a carefully structured managed return with my employer and with the preparation and advice from my Acquired Brain Injury Team advisor I am making this work.
A good day is managing my stroke fatigue, it is working hard in a job I enjoyed knowing I can still do it justice with a few tweaks here and there. For us all a good day, it could be remembering an appointment or setting time to have a nap and recharge our batteries.
A good day for me is feeling I am me again, yes I have differences, yes I have struggles but I am making a difference. That I am not defined by the word stroke and what happened to me, but I am a proud survivor.
There is no comparison with others but a sense that no matter how small something is, it’s plays a vital part of our recovery. We should be proud of our achievements no matter how big or how small. We are surviving, sometimes it doesn’t feel like it but we are.
'On a good day I can face the challenges life brings, with clarity of thought and feelings. I can manage my anxiety and keep it at bay, my memory is clear and I do not falter.'
Expert by Experience Liz shares her experience highlighting that a 'good day' is about resilience, recognition and the ability to find strength and embrace the new version of herself.
By Liz Duncan
On a good day I can face the challenges life brings, with clarity of thought and feelings. I can manage my anxiety and keep it at bay, my memory is clear and I do not falter
On a good day I do not have to think about my fatigue and cope with a non alcoholic hangover I can go about my day without having to try to predict when my low physical/mental points will be.
On a good day I have no rain clouds hanging over my head which brightens my world, I can get out of bed and greet the day and all it has to offer with open arms.
On a good day I can embrace the rollercoaster of life, and get off when I want to, I can plan my day and not get distracted by foggy thoughts, and not being able to remember.
On a good day I can tell myself and accept that bad days will pass with no confusion, I can remember words and what I want to say, my confidence is back and brimming.
On a good day I can smile and shrug off the challenges of life and negative thoughts, I can embrace the new me, dispel the confusion life sometimes brings knowing I am still here.
On a good day I can reflect and work towards my life plans without a daily list to guide me. I can accept my hidden challenges of how the world sees me and how I see the world.
On a good day I can accept the loss of the old me and know this me is not coming back. I can continue learning about the new me, and adapt to this new opportunity.
A powerful poem written by Expert by Experience John.
"On a Good Day"
The body moves, the spirit sings.
And hope begins to spread its wings.
The words come back, a soft hello, Like rivers finding ways to flow.
A step is taken-not in haste-But full of fire, full of grace.
On a good day, doubt fades out, Replaced by faith instead of doubt.
A laugh escapes, a heart feels light, The soul stands faller in the fight.
It's not just healing bones and brain.
It's learning joy can rise from pain.
And though the journey's far from done.
A good day means the climb's begun.
So lift your eyes and feel the sun-You're not alone; you're not undone.
One breath, one step, then one more still-On a good day, so bends the will.
John MacCarfrae
April 2025
A deeply moving poem written by Expert by Experience Fiona.
There’s a shimmering sunrise in my brain,
The darkness has dissipated,
Replaced by light.
The tumultuous storm has burnt itself out.
Today,
I will do the things I’ve longed to do.
Live, breather, experience joy,
Bathe in the sunlight of my innermost illumination.
Until the tempest rages again.
Tomorrow,
Brings blackness, obscurity,
Deficiency of light.
Yet it will pass and become a yesterday,
Followed by another today.
'Anyone suffering with a brain injury should be proud of themselves and that they have come this far in their journey.'
Expert Ben highlights the everyday challenges of living with a brain injury, and importantly shows us that the definition of a 'good day' can vary.
Living with a brain injury has its challenges and often they are invisible to the people around you. You are in most cases dealing with it alone as the thought of having to re explain yourself to people can often be more tiring than dealing with your symptoms!
A Good Day for me would represent getting a good nights sleep, waking up early and then having plenty of water and a good breakfast. I will then go to work and I usually last until around early afternoon, where usually this would be when I get tired and need to have a nap/time out.
I have managed to negotiate this as I have a young family and the ability to sleep during the day is surprisingly difficult! I instead during this period, opt for admin activities that aren’t too taxing on the brain. I will try and go to the gym, which does not impact my fatigue.
I will then collect my children from school and take them to the various clubs as they have a very active social life.
My brain injury was in 2012, and I spent a period of time ignoring the signs of suffering with a brain injury, it was only until someone explained to me my symptoms, that I understood what was going on. In the years that have followed I have managed to mitigate many of the side effects of a brain injury by tailoring my day around it, and this has only come through awareness and experience of dealing with it.
A good day represents everything going right and me being able to structure my day how I like it. However, there are days where I am not well rested, there are days where I feel stressed, under the weather, low mentally, and in these circumstances a good day would be getting out of bed, taking a shower, eating good food and resting.
For sufferers of a brain injury, I think we have to look at what a ‘’perfect’’ day would be alongside a ‘’good day.’’ As the effects of brain injuries change from day to day, so does what constitutes a good day. I think its vitally important that we recognise what we are living with and what we are dealing with on a daily basis, and not every day is the same and some days we can take on the world, and some days we can just about get out of bed.
I look at life post brain injury feeling lucky. Lucky to be alive and lucky to be able to live a relatively normal life and enjoy having a young family that I can see grow up. So every day for me is a good day, I get more out of some days than others, but I think that is the same for everyone.
Anyone suffering with a brain injury should be proud of themselves and that they have come this far in their journey.
'That’s the end of a good day and thankfully I have a lot of them.'
Expert by Experience David reflects that simple but meaningful routines make up a good day, and tells us how his 'good day' centres around family, work, socialising and celebrating the ability to enjoy life's everyday moments.
A good day for me is waking up early in the morning with my wife and not feeling tired.
A good day for me is getting up without any problems, having my breakfast, my medication and taking my daughter to school.
A good day for me is having the energy to walk up and down to the newsagents to collect my papers and this two-mile walk constitutes my exercise for the day.
A good day for me is sitting down and planning my work, writing an online piece or maybe preparing before I head off to cover a manager’s press conference.
A good day for me is meeting my two friends at our local coffee shop and talking nonsense for 45 minutes over an Americano, decaf or full strength depending on how I’m feeling.
A really good day is being clear of work and being able to collect my daughter from school, especially if it’s raining, to save her the two-mile walk home.
A good day for me is having the energy to cook tea and a favourite of mine and the kids is burger and chips, with onion rings, sweet potato fries, peas and sweetcorn.
A good day for me is going out with my wife for a meal with our friends and not feeling tired by 8pm or forgetting people’s names when we’re chatting.
A good day for me is being able to cover a night match and not feel too knackered, although the adrenalin kicks in when I’m stimulated and with other journalists.
A good day for me is being home by 9pm and after being a night owl my whole life, I don’t have the energy to watch films and do late nights anymore.
A good day for me is reading for 10 or 15 minutes to help wind down, although I don’t need any help sleeping these days and after existing on six hours, I need at least eight every night.
That’s the end of a good day and thankfully I have a lot of them.