Rebecca's story

Hi. I’m Rebecca. I’m married with two grown-up children and work part-time as a teacher. I had a subarachnoid haemorrhage (SAH) one day out of the blue when I was 45. I had experienced a few migraines in the couple of months leading up to it but my consultant doesn’t believe it was connected and apart from that I was a normal, healthy busy person.

On the day it happened, I woke early and dropped my husband and daughter off at the train station as they were going to London to shop for my daughter’s birthday. On the way home I called in to my best friend’s for a cup of tea and then went home to shower. As I bent down to take my jeans off I felt a ‘whooshing’ sensation at the back of my head – it felt like it was opening up.

I felt very peculiar so rang my friend to say I felt odd – as if I was about to pass out – and wanted to tell someone. She asked if I wanted her to come round and by this time I was starting to panic, so I said yes. I remember thinking that the front door needed to be unlocked for her and grabbed at my dressing gown and missed. Something told me not to waste time getting it and just to get downstairs to unlock the door – which I did! I remember then sitting down on the bottom step of the stairs and being violently sick on the floor. After that, all I remember are snippets: my friend kissing me and telling me she loved me; the paramedic calling my name and telling me to look into his eyes; me trying so hard to focus on him. I remember the paramedic telling me my pupils looked good and I felt relief.

My friend had found me lying on the stairs in my underwear, choking, with my eyes rolling back and my face drooped to one side. She had immediately rung for an ambulance. When the paramedic asked my friend if I had fallen down the stairs, I remember struggling to articulate that I hadn’t and my head hurt.

It felt like I was talking in slow motion.

I was put on a stretcher and can remember feeling tightly strapped in, seeing bright lights and feeling fresh air. I heard sirens and felt them cutting my underwear off. I don’t remember them asking about my pain levels but I kept shouting out “ten!” and asking if I was going to die. When I ask my friend about that day she said that she reassured me that I would be OK but had panicked when the paramedic didn’t answer. She had called my husband and soon after he was there with me, along with my children, parents and brother. I just remember focussing on my daughter’s face.

I was transferred from my local hospital to Addenbrooke’s and was given morphine for my pain. I’m not sure when it was that I became ‘aware’ of what was happening. I think it was evening when my amazing consultant told me I had had a large bleed on the brain, a type of stroke called a subarachnoid haemorrhage (SAH) which was caused by a ruptured aneurysm. I would need to have surgery as they had also found an unruptured one. Strangely, I felt absolutely no fear! I don’t remember much from the following days by do remember being prepped for theatre. I had to sign consent that I was happy for them to attempt a coiling procedure, but if that didn’t work they would need to perform a craniotomy. There were massive risks but I just felt no fear and signed the consent form.

The fear was much greater for my family and friends, but when I got to theatre and saw the medical team getting ready I just wanted to have the anaesthetic to go to sleep and stop my pain.

I woke up to someone calling my name and remember immediately asking if I’d had the craniotomy. I felt such relief when they said the coiling procedure had been successful. The next two weeks were spent recovering with lots of visitors. I never felt so much love and will be eternally grateful for that. I had completely lost my appetite but soon found a new love for tasting foods I hadn’t particularly enjoyed before. I remember my husband feeding me an orange much to the delight of my family as that was the first thing I fancied eating. I LOVED the creamy mash the hospital served and enjoyed eating ice lollies too.

During the first week of recovery I had a few awful nights panicking and being disoriented. I had awful headaches, pins and needles down one side of me and weakness down the other side of me. My neck was completely stiff and so painful. I needed a frame to walk but eventually got stronger. By the time I was discharged it was clear I was one of the lucky ones. Although my scan showed signs of brain damage, I had recovered well, physically and mentally. Although my memory wasn’t great and I had bad headaches, nausea and was tired, I was recovering well.

I had a relapse a week or so later when I experienced terrible heart palpitations, I felt like I was slipping away. I was at the doctors when it happened and remember feeling very frightened and thinking it must be bad as the doctor was calling 999! I was blue-lighted back to hospital but fortunately recovered quickly and was sent home the same day. My Dad was with me at the time and I think I scared the life out of him! I had my driver’s licence revoked for nine months as I wasn’t in any fit way to drive. My friends and family rallied round and I wasn’t left alone at all for a few weeks. My husband helped to wash me until I felt confident to do it myself. My family and friends took me for little trips out but I would tire so easily.

The tiredness would be overwhelming. I was diagnosed with PTSD and had some counselling for it. After eight months I eventually went back to work as a teacher for a couple of hours twice a week and now all I do is two afternoons a week releasing other teachers rather than having my own class. Work completely exhausts me! To start with I struggled with noise and busyness and multi-tasking. I felt utterly overwhelmed. It took me a long time to be able to go out alone again but I pushed myself to do it.

Three years on I now consider myself recovered but just describe myself as a more fragile person. I feel like I’ve lost my confidence and my sparkle and get tired so easily which then leads to headaches and nausea. Things I would take in my stride before now can upset me so easily and my anxiety is high. As I look OK, people don’t understand sometimes how difficult I find things and how I can become so overwhelmed so easily. It can be frustrating and lonely but I now recognise when I feel like this and have accepted it as the new me who needs to take time out and rest when this happens.

I am so lucky but I still think about it every day. How one second I was fine and busy with life and the next I was fighting for my life.

I still wake having panics over it in the night but have learnt to calm myself quickly when this happens. I will have to have a few more MRIs over the next few years to check on my coils and to monitor the unruptured aneurysm which fortunately has remained unchanged over the past three years.

The Brain and Spine Foundation provided us with a booklet explaining all about SAH which helped myself and my family to understand what had happened and what to expect in the next few months. I also found the Brain and Spine Foundation Facebook group for survivors of SAH and I have found the support invaluable. Being able to talk and ask questions to people who have been through it was not only informative but also so comforting knowing there were others out there who understood. I hope I can offer the same to others now who are at the start of their SAH recovery. Although it was unlucky for it to happen to me as it is very rare, I am incredibly lucky to have survived and even luckier to have recovered so well. It makes you realise just how precious life is and how much family and friends mean to you and how easily it can all be taken away. Live and love!

Sharing your story helps drive positive change for people affected by neurological conditions. We like to share the experiences of real people who are using, fundraising or volunteering for our services to help raise awareness of neurological conditions.

There are many ways to share your story with us – in written format, as a video recording or an audio recording, we even have people share their story through artwork. It’s up to you which you most feel comfortable with.

To share your story, get in touch with us. We’d love to hear from you.