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  • Writer's pictureStephanie Speaks

The moment I realised that my invisible illness was about to take over my entire life

Updated: Sep 28, 2019

Travelling abroad.

2018. I was still naïve to how my life was changing right under my nose. I was already dealing with a new diagnosis of intracranial hypertension and my damaged vision was putting me in a more vulnerable position than I was used to. See, I could deal with the chronic Pain.inthe.Head, and walking into doors and walls, but my next diagnosis was yet to come.

It hit me like a ton of bricks. So sudden that even my specialist doctors were baffled at first. My body was suddenly reacting like I was having a stoke, and then allowing me to recover in cycles. So, when I was taking my children to Disneyland on Christmas eve for a well anticipated trip, the last thing I expected was for them to see me wheelchair bound before we even touched French soil.

I was dealing with what we now know as hemiplegic migraine. Don’t be fooled by the word migraine; it has the capability to paralyse me and rob me of my ability to walk in seconds. Sleep deprivation is a trigger for me; I should have realised as I strolled into the boarding queue and hit my head on the metal post conveniently dumped there to measure up my hand luggage. Everyone laughed. I shook it off in a daze.

4 year old pulls a Rapunzel suitcase through airport departures
Daughter in airport with Pain.inthe.Head prior to hemiplegiv migraine

25 minutes later my 2 kids (not young goats), their dad and I set off. It took around 5 minutes off the ground for the attack to hit; HARD. As I sat alone in several rows behind, I dropped into a slump in the window seat, with no strength to lift my head, I struggled to breathe and slobbered all over myself. I could hear people around me making suggestions and questioning what was going on. I heard one offer apple juice, because sugar might wake me up.

My girl’s dad tried to explain what usually happens, which is unbelievably hard when you haven’t had a diagnosis to work with!! The flight was 90 minutes and felt like 10. As the plane landed, I knew my body wasn’t ready to let me stand again. As I sat, stuck in the seat, I expected the understanding and patience of airline staff. WOW was I wrong! The fact that I didn’t notify them before I travelled left them complaining,

you didn’t book special assistance!”

The girl’s dad argued that I’ve for the best part of life been a very able person and only now am dealing with this, whatever “this” was. After 10 minutes back and forth, and a lot of difficulty, he carried me from the flight to a wheelchair, and pushed me out to the taxi waiting.

It doesn’t seem like such a catastrophic story to some; but for me it was the stark realisation that beyond the pain, and complications I also had to deal with the loss of my independence. The loss of the right to do things and challenge myself alone, because how would I even come back from an attack with no one to help me up from the ground.

I promised myself when diagnosed that no matter how hard these illnesses got for me; I WILL NOT LET THEM WIN MY LIFE. I refused to put myself in a box and miss out on experiences that I’m entitled to take just like others.This is precisely how I blossomed in to a Liverpool blogger. I created my very own private bucket list and have been slowly but surely breaking down all the stereotypes I’d set upon myself in past. For this reason, I now plan every, little, activity I do to stop the “what if’s” becoming the “oh shit!”

Here’s my top 6 tips on travelling abroad with invisible and chronic illness.

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