My stroke story

In September 2011, at the age of 41 I found myself in a hospital bed with a very unattractive haircut, a tube coming out of my head, and no memory of the previous ten days.

My last real memory was of being violently sick and deciding to go into accident and emergency at around midnight on Sunday 4th September. The week before I had complained of a strange headache. All of my previous memories were and are intact. 

I was told that I had survived a cerebellar infarct with hydrocephalus and mass effect – a stroke with fluid on the brain and brain stem compression to you and me. At that time, I had no idea that people of my age (i.e. Under 65 years old) are susceptible to stroke and I had no idea why it had happened to me.  When my continuous memory came back, at around the 14th September, I was on a high dependency ward at the Leeds General Infirmary.

During those first ten days I had been awake and talking to people but the memories of that time did not stick around.  To be honest I am OK with that (my dignity sincerely thanks my brain for forgetting). A couple of confused Facebook posts and text messages were sent during that time, the cause – a combination of tiredness, brain fog, and auto correct. Thankfully my other half confiscated my phone until I was a bit more capable. I think that the message below was supposed to be “food is good lots of ice cream” and “looking forward to …” something.

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I underwent a battery of tests but nothing came to light and the cause is still a mystery. I spent just under three weeks in hospital and was then released on my own recognizance. This was on the understanding that I would be visited by the Leeds Community Stroke Team. They visit you at home and help with occupational health and physiotherapy for a few weeks after your discharge. I also visited the hospital for periodic blood tests and a couple of meetings with my specialist.

Before I carry on, I feel I should say that I have had over three years to get used to being a stroke survivor, I have gone through the stages of grief and am well and truly in acceptance.  In addition to this I have been incredibly lucky to have suffered few long term effectsYou might be at a different stage and be affected differently.

I went back to work at the beginning of November 2011 on very short hours and built up the time I spent in the office between then and the end of December.  At that point, I realised that I was not ready for full time working and reduced it again. It was June, ten months after my stroke, before I was ready for full-time work.

The reaction from friends and family was amazing and I am grateful to everyone but especially to Mick, my other half, for all that he did at that time and since. The staff at LGI and the Community Stoke Team were brilliant too.

me

My hair eventually grew back.

Being ill made me realise that I needed to get on with life and has meant a few changes in the last couple of years, mostly around work and enabling me to have more control over my time.

When I was first admitted to hospital it took two days for me to be diagnosed, to begin with they though it was probably Meningitis and I was quarantined in a little side room. I believe this is because of the diagnostic pathways in use at Accident and Emergency and the fact that my stroke did not present with the well-known facial droop, limb weakness or speech problems.  There is a smaller percentage of younger people who have stroke but the benefits of early diagnosis mean that it is essential that tests are done earlier.  Studies of the numbers of people misdiagnosed and their outcomes are really scary. Many of these people are working age or younger.

During the time I was ill I did not engage with the Stroke Association. Once I was better I realised that it would have been really useful to have done that so I  volunteer to increase awareness. I have supported events like Step Out for Stroke and helped with fund and awareness raising at places like Headingley Stadium. I am just about to start helping with the social media content strategy delivery for my region which looks after Yorkshire and the East Midlands and in the future I hope to be able to tell my story as a media volunteer.

I still get tired easily and I have memory problems from time to time. I describe my stroke as the worst thing to have happened and the best thing to have happened to me. It gave me a new perspective.

You can see me telling my story in a five-minute talk at Bettakultcha last year. [Update 4/9/16 – Fixed broken link]