Today marks the start of migraine awareness week. I really wanted to write a migraine themed post, but had difficulty picking an aspect of migraine to focus on. I’ve already talked about migraine and photosensitivity, I’ve shared my experience of Botox Injections for Chronic migraine and I’ve got pages talking about the two types of migraine I experience – basilar type and hemiplegic. So what else is there to discuss? I contemplated this for several days, before it hit me. I realised that I haven’t yet talked about the thing that always seems to shock people about my migraine – that it’s never ending! So here we go, my experience of living with chronic migraine.
I had a migraine here…
*Please note, this isn’t a woe-is-me kind of post – that’s not my style. Rather, it’s purpose is to demonstrate the impact living with chronic migraine can have and show that it’s not ‘just a headache’.
My migraine started Christmas of ’97 and has never gone away. I was 11 years old. The intensity fluctuates and the accompanying symptoms change, but it’s always there. The response I get from most people when they learn this is “So, you’ve got a migraine right now?” In a word – yes.
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As you can probably imagine, living with chronic migraine has impacted my life greatly. When I was in year 9, I had to have half a term off school. And the two half terms either side of this, I was only in for the mornings, then home to sleep. And because my migraine is significantly impacted by lighting, I’ve never been able to go to a club and have to be careful what I watch on TV or at the cinema. I also find that my pain and additional symptoms are worse during the autumn and winter, with more artificial lighting being used. Christmas is always a challenge, I’ve gone into more detail about this in my photosensitivity and flashing lights at christmas post.
With my basilar type migraine, I can loose consciousness. At it’s height, when I was on half days at school, I was loosing consciousness 20-30 times a day. My loss of consciousness was also problematic while I was studying for my degree, which caused a number of challenges. Some academic, others related to staying safe while living away from home. In addition, I’ve been discriminated against at work because of my chronic migraine. You can find out more about this in my disability discrimination post.
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My migraine and photosensitivity means that I’m not medically allowed to drive, can’t bath unsupervised and can only go swimming with another adult.
Even our wedding had to be carefully planned to minimise the effect lighting would have on my migraine. We had a summer wedding that started early in the day (approx. 11am), so we could make the most of the natural lighting. We found photographers who were happy to shoot without flash and, instead of a disco, had afternoon tea and games on the lawn.
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My migraine and photosensitivity were also the reason that Elise was born by elective cesarian section – the hospital wouldn’t have been able to keep the lighting safe for Elise and me in a labour situation. Lets be honest, they didn’t even manage it in for my cesarian – 2 lighting issues in the 2 hours before my operation!
Now this isn’t a comprehensive list of what living with chronic migraine is like. I’ve largely focused on the way it’s affected my life, rather than the symptoms themselves. And, of cause, this is just a selection of the many, many things that my migraine has had an impact on.
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There are daily adaptations I’ve made to my life to make living with chronic migraine that little bit easier. Eliminating certain foods from my diet, wearing precision tinted lenses to reduce the impact of problematic lighting, medication and many other things are in place to allow me to live and function as best I can.
I’m not alone in living with chronic migraine. I’m certainly not the only one who faces challenges in their life because of migraine. Whatever the cause of a person’s migraine, what ever symptoms they experience, migraine is a debilitating condition. It’s not ‘just a headache’. Living with chronic migraine is hard. You can find out more about misunderstandings migraineurs face in my migraine misconceptions post.
Do you experience migraines? How have they impacted your life?
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