In October 2014, I went to the hospital, suspecting I was experiencing stroke symptoms. I was having issues with balance and tingling in my limbs. My first major episode looked (and was dealt with) like a significant stroke – I had lost all power and strength down the whole of my right side, my speech slurred and my face drooped.

Over the next six months, I was hospitalized three times and underwent countless tests to understand what was happening. After each episode, I would recover very quickly, leading the stroke team to rule out transient ischaemic attacks (TIAs) and I also received scans and tests to check for epilepsy. At a point, it became clear that while medical professionals had ruled out stroke, they didn’t have an answer for what it was.

Since then, I can experience multiple hemiplegic attacks a day. The symptoms are often different during each attack but can include: tingling on the right side of my face, (but can also feel like pins and needles in my hand, neck, arm and sometimes into my leg and foot), a sudden and extremely ice cold feeling down my right arm, a droopy mouth and/or what looks like a lazy eye. The attacks range in severity and duration – I can experience slight tingling that lasts 45 minutes, or I can experience a complete paralysis of one side of my body with little memory of what’s happened and take days to fully recover.

After a lot of trial and error, I am now on a combination of medication that works for me. It reduces the severity of the symptoms, but it doesn’t take them away completely. The longest I’ve gone without an attack was five months – in that time, it was as if I didn’t want to jinx it by getting my hopes up. When the attacks returned, they returned with a vengeance, and it was hard not to feel gutted.

My husband, Geoff, and I did lots of research ourselves in the run up to, and after, the hemiplegic migraine diagnosis. He has been such a stabilising force for me as I’ve navigated this condition. He has this calm and pragmatic way about him, just this energy of, ‘right, what do I need to do?’ I’ve had to lean on him a lot (metaphorically but also physically, when my balance is bad!).

I often think in some ways it must be worse for him when I’m in a bad attack – for me, yes, I am going through it but it many ways I’m not fully present, whereas for him, he can see the full impact it’s having on me.

It’s important to me to talk about hemiplegic migraine, even though I do sometimes get fed up explaining over and over, particularly when it comes to healthcare professionals! In my previous job, after talking about it, I had a colleague mention that she also experiences hemiplegic migraine – I couldn’t believe it! It’s such a rare condition and yet here were two people working in the same place, experiencing it! We spoke a lot about the challenges, and what helped us to cope. We agreed that if we were struggling, we’d hop on a call and support each other. We called ourselves the ‘wonky brain twins’! It was wonderful to have someone to speak to who truly understood.

In a previous job, when I worked in an office a few days a week, Geoff would travel in and out with me, it’s rare that I would go anywhere alone and I don’t drive much anymore. There is definitely a lot of anxiety that can go along with the episodes.

It’s only recently that I’ve started thinking about how hemiplegic migraine affects me and therefore affects my mental health. I have to admit staying positive isn’t possible all of the time but I take the approach that worrying about what will happen next won’t change anything. Geoff is good at pulling me out of those negative mindsets. I’ve even changed the way I talk about hemiplegic migraine – what I used to call ‘hangover days’ I now call ‘recovery days’. I never say I ‘suffer’ from migraine, because I’m not a victim of the condition, I say I ‘live with it’ and I really do live with it – I go on trips abroad, go to the theatre and don’t let it hold me back from living.