As part of annual monitoring for a genetic disease I actually have an MRI every year anyway, and coincidentally already had one booked for two days later, but by which time I was also noticing a numb left arm. The MRI showed a slight bleed in the pons area of the brainstem (part of which influences eyesight) caused by a cavernoma and my neurologist told me it would heal on its own within a few weeks and didn’t seem concerned about my arm.  I was given a prism for my glasses and I thought nothing more about it.

I turned 35 in April and we were due to go on a family holiday to Disneyland Paris for the first May bank holiday. A few days before, everyone came down with norovirus, but they all recovered quickly. The morning we were due to travel, I felt horrendous, I was dizzy and extremely nauseous following my double vision, which had begun to return the day before.  At the time, I thought this was karma for being smug that I didn’t get norovirus!  After two and a half days of being very poorly in the hotel, I got the Eurostar back to London. Having given my neurologist advance notice that my symptoms from February were back and way worse than before, I went to see him the next day. I was admitted to hospital and this is where my memory goes blank – and until the middle of August.

I spent a  month in intensive care at the John Radcliffe in Oxford, where I was sedated for part of it. Having lost the ability to swallow, I had a tracheal and nasogastric tubes inserted, both of which ended up staying there for six months and were eventually removed in rehab. I was then transferred to The National Hospital for Neurology and Neurosurgery in London. I had surgery on a cavernoma, which had caused a bleed within my brainstem, and resulted in an haemorrhagic stroke. I spent another two months in intensive care and a further couple of weeks in a neurosurgery ward before eventually being transferred to rehab in mid-August.

As soon as I arrived at rehab my memory returned. I was unable to walk, talk or swallow.  I spent four months in rehab re-learning all of this.  Main ‘deficits’ that have happened in my case, are that my pupils don’t sit evenly causing limited peripheral vision. I have restricted mobility and can generally walk on a familiar surface indoors without an aid, but I use a combination of my pole and my walker outside.  It’s definitely been a long (and still ongoing) recovery.  I’m stubborn and determined, so I’m not the best at taking things slowly!

When I was in rehab my therapists were amazing, but I didn’t have anyone my age to talk to.  It would be nice to have had some form of peer to peer support network.  One thing I will never do again is ignore things. I’d put the symptoms prior to my stroke down to norovirus and even ignored that my vision problems had returned and I was so dizzy – that I could barely stand up.

I found Different Strokes when I was looking up support services online. I’m so glad I’ve found this group and have the chance to chat to others going through the same process! Having been completely blindsided by my situation and having no idea what to expect, I’d like to somehow support others.  To anyone going through this I’d also highly recommend keeping a video journal of your progress. It’s so difficult but try your hardest to remain determined and find something (no matter how small) to make you smile, and every day.