I was demanding much of myself at a very fast pace. I tended to take on too much, which was not helpful with an underlying condition that has likely been there since birth, and I knew nothing about at that point.I had suffered with severe migraine headaches from a very young age. The severity of these increased running up to the major event. A few years before I suffered an episode that left my left side mildly weaker and I found myself falling off balance towards the left and back, especially when tired. Even two days before the stroke I was having challenging conversations around the need for further neurological assessment. I was usually delayed or refused due to my age. I remember “too young to have anything significant – it’s only the migraines” being said.

On the day I had the most debilitating headache; an excruciating pain spreading from the back of my head and throughout, I turned blue in my face and sweaty and felt very sick within minutes. I sought help immediately. Thank God for the built-in emergency buttons. In that pain – I simply could not think! I was able to move at that point and let the people from the ambulance in myself. They did not believe it was anything serious and insisted it was “only” my usual migraine. I was quite assertive that I knew my migraines, and that this was something very different and needed immediate medical attention. They reluctantly took me into hospital, saying to my neighbours how they didn’t think it was anything serious on the way out.

By the time we got to hospital within about three minutes. I could not raise my head and had a severe upper body ache and stiffness that stopped me from moving, or even sitting up. It was explained to me later that blood had entered the spinal fluid too. In hospital the CT scan very quickly established that this was a life-threatening emergency and I needed to be referred to Bristol for specialist support urgently. The doctor reinforced my assertiveness in being brought in. It was the ultimate lifesaving fast response.

The way the doctors spoke seemed a little cryptic to me, but I knew it was serious. I told my husband at the time what I wanted, if I didn’t make it out alive, since I did not have a will yet at only 29 years old. It was the worst headache of my life, I often felt sick and vulnerable, unfortunately I could not control it and it also happened while waiting for scans in waiting areas. It occurred to me that I was very young compared to others waiting in that area, and their faces were a picture when they saw me; being so young, but still jumping the queue as an “emergency”.

Recovery has been a mixture of ‘better’ and ‘worse’ days, unpredictable and slow. This is a lifetime condition, really. While I made a relatively ‘good’ recovery, I live with remnants of a physical, emotional and cognitive nature that are not visible to all, unless I’m pushed into neuro-fatigue. Then it’s rather visible and actually, I should never be pushed that far. I’m getting better at managing my energy and setting boundaries that prioritise my health.

My stroke reminded me of what mattered and what didn’t. Not for a moment did I feel a victim. I tried to find purpose in the suffering, and a way to grow through it. Mindset mattered. I surrendered, since control was out the window and I never gave up. Life has not been a walk in the park, and my stroke affected the way I think, feel and behave that does not fit a neurotypical world – whatever that “myth of normal” means.