Tracy's story

It all started in 2015 in the motorbike warehouse I’d worked in for 10 years. Like usual, I’d bent down to lift a tyre, but unusually I felt disoriented and unbalanced. Then a couple of weeks later my sight felt strange. Everything looked overcast and like it was filtered in yellow light. I thought I just needed new glasses. So I went to the doctors and opticians and they both ran some tests. Hospital appointments followed and an MRI scan picked up that I had an arteriovenous malformation (AVM) in my brain.

The best way I understand those three little letters is like a large ball of tangled elastic bands (blood vessels) in my brain. Even though I had no pain, (just the weird sight alterations) the doctors discussed potential therapies – gamma knife, surgery or radiotherapy – to reduce or remove it – but all were too risky. My AVM is too big and too complex, so they decided to leave it alone with regular six month check-ups. I accepted the AVM, let it slip to the back of my mind, and got on with my life.

Then one Sunday night in September 2017, I was sat in my armchair watching the X Factor when suddenly I felt a sharp pain in my head. ‘Hun, I’ve got a horrible headache’ I said to my husband Keith. Knowing that this was very unusual, he got up to get me some paracetamol and then without warning, I projectile vomited all over the living room floor, and everything went black. When I woke up, I thought I’d been dreaming, and realised I wasn’t in my own bed, but instead surrounded by the faces of my family peering over me looking concerned. Keith looked ashen grey and said: ‘Hun, you’ve had a bleed on the brain.’ I didn’t understand and felt so tired that I dozed off again.

Realising you’re in hospital but not realising why is such a surreal experience. My head, neck, back and hips all hurt, but I didn’t know the cause. It wasn’t until I met my Neuro Consultant that the reality of what actually happened hit me. I’d had a subarachnoid haemorrhage (SAH) – one of the blood vessels on my brain had burst and caused blood to leak. And it wasn’t until I started reading up on the condition that I realised how lucky I was. Many people who have an SAH die on impact, many have a stroke and many are left with life-altering after effects.

Aside from the aches and pains, my daughter noticed some black bruising on my legs when I was recovering in hospital and asked me what it was. ‘Oh, that’s just where I helped Dad lift the oven’ I replied. Looking back, if I had known what I know now – stress, lifting, poor diet and caffeine all contribute to raising your blood pressure which puts your AVM at risk from a bleed, I never would have lifted that bloody oven.

It’s funny because my daughter always said I had a ‘lazy brain’ and now I know why. The neurologists think I may have had the AVM since birth, and it has significantly grown, even over the last couple of years. They think if they had found it earlier, they would have been able to remove it – completely removing the risk. But the reality is, I’d had no symptoms until I was in my early 50s, I didn’t even suffer from headaches.

Since my first bleed, I’ve had a further flutter. I was on holiday in the Gran Canaria and at breakfast, I said to my sister-in-law ‘the diamantes on your top are dancing.’ They were literally floating in the air. She rushed me into hospital and they think there was some subtle activity on my brain which caused this, but luckily I haven’t had anything else since.

I have lost some important things since my SAH. But losing my driving licence because of my sight loss has ultimately lost me my independence. At first it really bothered me, but now bus is my best friend. And although I am now registered as partially blind, and I’ve been told I’m likely to go fully blind due to the immense pressure my AVM is putting on my sight, I’m trying to see everything I want to before I can’t anymore.

My daughter has helped me put together a ‘Before I Go Blind Bucketlist’ and because I’m not high maintenance, you won’t see swimming with dolphins or climbing Kilimanjaro on there. Instead, I want to do the simple things – go to the cinema to escape into another world, feel the cool breeze on my face as I ice skate outside in wonderful Winchester at Christmas, and play with my puppy.

I don’t see myself as having a neurological condition. Instead I’ve just had to adapt the way I live my life because of my brain, and it’s taken me a few years to realise that I’m an SAH survivor. My family have told me that even though I can’t drive, can’t work, can’t lift anything and will likely go blind and could have another bleed, as long as I’m still here, they’ll love me anyway, and love really is all you need.