Sharing the Light with Laughter

I love all the things that are bad for me

I don’t drink. I don’t smoke. I don’t do drugs... I DO COFFEE.

It gets me through the work day. I am more than willing to pay for my coffee. Now in the UK, I pay more than £3.50 for my caramel macchiato and at the current exchange rates that’s more than $5.50 for 1, yes one cup of coffee. I have no idea if that’s normal in the USA but you can buy at least 2 kindle books for that price.

I don’t mind though, because I love the smell of the sweet coffee and vanilla, the feel of the fluffy milky foam on my tongue, and the warm caramel coffee tantalising my taste buds for the first time. I enjoy every sip of that 20oz cup and it usually lasts for 2 hours because I can drink it lukewarm.... ice cold coffee? Ew!

BUT- and this is a HUGE but - I can’t drink COFFEE... I have to drink – ugh – DECAF! Now, you coffee lovers are hissing “don’t swear at me!” aren’t you? And you have my sincerest apologies. :-)

I also love melted cheese, especially Pizza, and pastries we brits call chocolate éclairs, caramelised and roasted hazelnut chocolate, some curries. But I can’t eat these either. Well, I can. But I’ll pay for it if I do.

It’s been two and a half years since I was diagnosed with Chronic Daily Migraine with Aura. You’ll see at the top of the screen a tab referring to the ‘M Word’. We don’t talk about it around here. But today I’m going to break the silence because today I wanted to think not about my lifelong debilitating condition. No, not about me, I’m incredibly lucky to have the life I have and it can all change in a second so I won’t complain.  But I wanted to think about those who don’t see the light at the end of the tunnel yet.

I don’t know who you are. I don’t know your situation. So I can only tell you what helped me and how I managed to see the light at the end of tunnel with a condition where I spend up to 2 out of 3 days with a migraine and at my worst I spent weeks in bed. A condition that put me on the verge of losing my job. A condition that prevents me from not only leaving my house but from watching television, listening to music, reading books, opening curtains, using the telephone, doing domestic chores, there are days when my symptoms make personal hygiene a major difficulty. So I hope that in sharing my strategy I can help you in some way with yours.  

I learned to change the way I thought about my situation. It started with Big brother like posts. “Day 37 and the migraine is...” I was so fed up with the permanent migraine and the situation I started to poke fun at it on social networking sites.

“Is fed up of having a headache. Yes I've DOWNGRADED it to a headache to p off the migraine and yes the migraine has a personality of its own and I do fight with it LOL! ;-)”  

I began to amuse myself at the migraine’s expense, stopped taking it so seriously all the time because frankly, I was cracking up. Or maybe I did crack up. Either way I was the best thing that happened for me because after this life did get hard and humour helped me through. I was able to detach the end of the world effect the migraine had had for eighteen months and take my life back. Become pro active, gain control and start figuring out what my new limitations were. After all, my condition isn’t going away. It’s part of who I am. How I handle it is how I define the person I am.

Two weeks before I was due to start studying at university I had a migraine so severe they suspected I’d had a stroke. Now I have tremor in my right hand. It’s a permanent symptom that varies from barely noticeable to uncontrollable depending on the migraine day. It was a setback. But I was able to start my course. I rule my life, although I’ll admit the migraine has a say and on those days when I can’t get my symptoms to shut up I don’t want to listen but I do.

These are the hardest days. These are the days when I’m cut off from the rest of the world, from my family, from my friends, my colleagues, and my classmates. I can’t bear to hear the children playing on the street and its torture twofold. They make so much noise, they cause me so much pain and still I want go out there to enjoy the day like they are. But I can’t and I can be like this for weeks.

I understand how hard it is to keep your head up high. When day after day, week after week, month after month there is a constant reminder that you aren’t completely whole. And other people remind you that you aren’t completely whole also, regardless of the laws which are supposed to prevent this.  But the constraints placed around you are there simply for you to break free from. You only have to find a way to work around them.  I love coffee... Now I drink decaf. LOL! Okay, okay, but seriously the tremor in my right hand... it’s so bad at times I can’t hold a pen, not good for a right handed author, so I learned to write with my left hand.

My symptoms are affected by natural light rather than artificial light. So when I’m at my worst I live in our attic room away from the noise that the rest of the world creates. I talk to people in the online communities. My online friends keep me sane. I’ve found a profession I enjoy which I am pursuing a qualification in that won’t be hindered by my migraines because I can work from home when I’m suffering.

I am also a soon to be independently published author. I take some powerful meds daily to control my migraines and find that sometimes a distraction works just as well as a pain medication. For me, writing is a fantastic escape from the real world and to forget what holds me back. When my symptoms subside and I can go back to my life again, I’m more positively minded than I used to be.

This is my life and I am in control. I eat pizza, but only freshly made pizza because frozen ones trigger migraine. I eat chocolate when I’m at my peak of non-migraineous symptoms. I eat chocolate éclairs but only on Tuesdays and Fridays or on annual leave because I can’t always guarantee they won’t trigger a migraine. And I went on the search for the best coffee house whose DECAF tastes like their regular coffee. And as frustrating as they are, I take each acute migraine with aura attack as it comes. I don’t worry about when the next one is going to come because I can’t change it.

As I said, these are the tools I use and they work for me. Please share my story with your family and friends and anyone else who doesn’t see the light at the end of the tunnel yet. I hope I help.

Erin

Read an excerpt from my debut novel Tainted Love

Read my migraine story at http://authorwithamigraine.tumblr.com/ 

email me: erin@erincawood.co.uk