Monday, 19 August 2013

Guest Blog Post: Julie's Story: 'Are we there yet'? Walking Miles for the National Migraine Centre


The lovely Julie was so inspired and grateful to the National Migraine Centre for their help and support, she's not only going to try and re-claim her life but is walking a whopping 25K on the Thames Path Challenge to raise funds. Don't just wish her luck, get our your check books and give some money. The National Migraine Centre certainly changed my life and I'm so pleased to hears it's done so again. Help the NMC help others. 

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"Are We There Yet?"

Julie, one determined lady

There are some days when I just can't rise above it.  Today is one of those days which means I must be starting with another migraine, or maybe I'm just a miserable so and so and giving in too easily. That's how I feel when I've got a migraine, so that must be what is happening. 

But the thing is, I don't (always) get a headache. So then I feel like a fraud. Other migraine sufferers endure excruciating pain when they have a migraine, but I don't always have the pain so I hate myself for retreating to my bed for three days (currently on a weekly basis for 3 / 4 days at a time) to escape the horrible dizziness, incapacity to think straight or string a sentence together, see properly, put one foot in front of another and the overwhelming need to sleep ... but of course I can't sleep because I'm not actually tired, just incredibly sleepy and dangerously clumsy.  

As long as I lie down and don't move I'm relatively OK.  There's often no pain (if there is it arrives day 3 or 4). So I am a fraud right?  I'm not a real migraineur. So I tell myself off and try and get up - rise above it - and find I can't. 

The thing is, why do I even think I should rise above it? Embarrassment? Appearing weak willed? What is weak willed about having a migraine? If I had a broken ankle I wouldn't be weak willed would I?  But the fact is I had a broken ankle a few years ago (read here about how it happened if you're interested - its a bit of a saga ...) and I was still living a life; whereas I don't feel that I do with migraines - unless its in fits and starts.  And then because I've 'lived' in between bouts I wonder whether it was the 'living' that triggered the next migraine. 

What I do know is that I'm certainly not me anymore. Not the me that I recognise anyway.  But then maybe I have to accept that this is the me I am now? That trying to be the real me is just torturing myself, because it can't be done, because some days I just can't rise above it.  But that's what the real me does. 

The real me is fun, hardworking, creative, compassionate, energetic ... For example Chris (my other half) said when he met me that I was a verb. 
To Julie
To be Julie'd

The real me does stuff like singing, tandem parachute jumps (actually for fun,  not even just for charity)  hikes the Inca Trail, works 5 days a week, cares for herself ...

I eat well, I drink sensibly, I try to keep fit, I observe good sleep hygeine, I've never broken a mirror... What have I done to offend the gods enough to deserve only fleeting glimpses of me?

Then through the power of Twitter I stumbled across Victoria,  then I found her Migraine Monalogues and then I discovered the National Migraine Centre!  So after 7 years of being told I had labyrinthitis and 2 years of being passed around ENT, having MRIs and having to re-explain YET AGAIN what my weird symptoms were; I finally got to see a lovely doctor who didn’t think I was mad and and who, even though her (nearly) parting words were “I’m afraid it’ll only get worse”, made me feel the most positive about being able to manage what is happening to me that I’ve been for years.  She understood.  And that is worth its weight in Topamax any day of the week. 

So, after my first appointment I decided that I refuse to accept this new me, that I fully intend to be me more often than I'm not, and so I have set myself a challenge.  I'm going to raise money for the National Migraine Centre in the hope that their research can help me get me back for myself and my family and of course other me's back for other sufferers and their families - I'm not that selfish just to do it for  myself ... ;) 

My mum (Eileen), who also suffered from migraines has been courageous enough at 69 years young to volunteer to do the challenge with me - thanks mum!  So the small but perfectly formed team "Are we nearly there yet?" are taking on a modest, but for us challenging, 25km of the Thames Path Challenge on 14th September. 

I'm keeping everything crossed that I'm migraine free on the 14th and would be enormously grateful for any donation you feel able to make. Our fundraising page is at ww.virginmoneygiving.com/team/wenearlythereyet  but if you can't manage £5 - which is the Virgin Money Giving lowest denominator - then I'll quite happily accept a pound coin sellotaped to the inside of an envelope! Just tweet me and I'll let you have my address. 

Thanks for reading. 
Julie. 

When I'm not having migraines, I work in Digital and Technology as a Project Manager and Business Analyst (don’t yawn!) But the stuff that really 'feeds' me is singing, hiking, gardening, my family, my cats (nearly put them first ...), and Percy Pigs.

 Julie! I'm so inspired by you and so admire your positive attitude. We can't let those migraines win and I wish you a migraine free day for the 14th. I'd just like to say that you ARE a real migraineur (whatever that is). Remember migraine is more than just a headache, and lots of other migraine sufferers don't get the head pain part either. You're not alone. Your experience is totally valid and just as incapacitating as other forms of migraine. One is not worse than the other. 

If troubling headaches or migraines are causing you strife, book yourself an appointment RIGHT NOW at the fabulous National Migraine Centre. You don't need a GP referral. 



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