Friday, 30 August 2013

Migraine in the News!

Turn on your TV and Radio sets!

Today the Migraine Trust and the VERY cool short film made by Saatchi & Saatchi as part of YouTube's film hack event (read all about it here) has been featured on the news!

Why? Today the Migraine Trust issued a warning that us 8 million migraine sufferers in the UK lack the support and help we need. Why? Because GP's only receive, on average, about an hours training in Migraine and headache. This needs to change! I have suffered from this lack of training and know many others who have as well.

You can see the Sky News interview here:

And here is the Saatchi&Saatchi video in full.


Migraine is more than just a headache - and needs to be taken seriously by the medical profession.


Dont forget! Migraine Awareness Week will soon be upon us! Join in my blog challenge.

Tuesday, 20 August 2013

Migraine Awareness Week 2013: Blog Challenge and Prompts. Get Involved!!


This year MAW(migraine awareness week) runs from the 1-7 of September. I will be posting a special blog each day of the week and I’d love you to join me. Below are a list of prompts (be inspired and don’t feel you have to stick rigorously to these) for each day. I will post a link to your blog post if you send me the link by 9am on the day.


For the first blog prompt – I would love to start with a huge, joint, blog from the UK migraine community. To join in, send me a picture of yourself mid-migraine by Saturday August 31st and I will put together a montage of our faces! I will also link to a blog post from your own site too, if you’d like.

Yes, the prompts are all from musicals. Deal with it. I have taken some of these from the fabulous Teri Roberts, Diana Lee and Ellen Schnakenberg who organised a similar blog challenge for Migraine Awareness Month in the U.S.A. Thank you Ladies! 

Get writing and raise awareness!

Musical Blog Prompts:

  1. Phantom of the Opera: “Masquerade” - Behind the Mask – What does a migraine really look like? What symptoms do you hide from others?  Please send me a photo of yourself mid migraine before Sat August 31st if you want to be included in this joint blog post.
  2. Carousel: “You’ll never walk alone”. Where and from whom do you get most support? Your GP? Friends? Migraine Charities? How do you find comfort in knowing you’re not alone?
  3. Little Shop of Horrors: "Feed Me, Seymour": What comfort foods do you reach for when you have a Migraine or Headache attack? Do you follow any special eating plan?
  4.  Mamma Mia: “Money Money Money”: How does living with Migraine or another Headache Disorder impact your financial situation? How much have you spent on migraines in recent years?
  5. Rent: “Seasons of Love”…Five hundred Twenty-Five Thousands Six hundred minutes. How many days did you lose in 2012 to migraine? Or how many days have you lost so far in 2013? Look at your migraine diary and try to estimate days lost to migraine.
  6. Evita:Don’t Cry for me Argentina”. Do you want empathy and understanding? Do you want sympathy? Do you ever NOT want to talk about your migraines. Why? When?
  7. Les Miserables:I Dreamed a Dream”. What would your fantasy dream, migraine free, day look like? There are no limits, you are a perfectly healthy person and the world is your oyster. What would you do?


Remember to use hashtag #MigraineAW2013 and link back to this blog. Or #MHAW2013 (so as not to be confused with Make a Wish). Also use all the usual hashtags #migraine, #headache, #chronicmigraine, #awareness.

If you don't want to write a whole blog post, but just have a comment, contribution of any sort, do email me and I'll include it in the day's main post. 


Other ways to help MAW 2013:
The Migraine Trust have posters and leaflets for the week. I shall be wondering about my hood making every and anyone display them. Order your pack, plus a info pack will be sent to your local G.P. The Migraine Trust, National Migraine Centre and MigraineAction all have ideas on how you can get involved and help them out this year.

Share facts and figures: Every day on Twitter and Facebook share a fact about migraine to your friends and followers. The Migraine Trust has a good fact sheet here and also via the National Migraine Centre. The American Headache and Migraine Association also have this fact sheet

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. 



Wednesday, 14 August 2013

Book Club Update: Migraine and Other Headaches by Dr Fontebasso

Once again I am filled with a warm fuzzy glow of appreciation for the lovely members that make up the Migraine Monologues Book Club. Last night we 'met' online to discuss Virginia Woolf's essay 'On Being Ill' and the film 'Love and Other Drugs'. Our conversation was led by the fabulous review that Book Club member, Amanda -  had so beautifully written. You can read it here. You can also read highlights of our conversation here. I know we're all going to be reading Woolf's work with a different frame-point now, and it was equally useful to consider another chronic condition. I am always pleasantly surprised at the topics that these books bring up - that might not, at first - be obvious. They provide a spring board for which we talk about life with migraine - and all that entails. And I am always so grateful for the little community we've built up. It is so useful to exchange notes and ask questions to a group who know exactly what the other goes through. We did, by the way, conclude that we all get migraines because we're complete geniuses and our brains are just too big! So there.

Next up, we're going to be reading a Migraine Management book by Dr Fontebasso who leads the York Headache Clinic. The book is called 'Migraine and other Headaches: Answers at your fingertips.' Daisy, of Migraine Memoirs, has very kindly offered to do the review.

We will be meeting on Tuesday October 8th at the usual times of 6pm UK and 1pm USA. 

You can buy the book via the Migraine Trust website, which I urge all to do - but it is also available via most bookselling websites!


I look forward to meeting more of you on the 8th October. Remember anyone can join in!

Monday, 12 August 2013

Surprise! I don't have Migraine....

Just kidding! I do still have migraine - and I always will.

This pithy tag line is actually taken from a new TV ad commercial currently on in the States for Kmart Pharmacy.

A husband and wife are nicely 'surprised' that Kmart have a pharmacy. They then reveal other 'surprises' in their relationship....The wife says 'Surprise: I don't teach pottery at night ' and 'Surprise: I blew our retirement fund at the track'. The husband responds with surprises of his own, including the fact that he is a Canadian Spy. The wife responds with 'Surprise: I don't really get migraines.'

So, OK - the implication is meant to be, I think, that she's been faking 'migraines' or headaches to get out of having some intimate lovely dovey time with her husband in the evenings. We all know the cliched saying "Not tonight darling, I have a headache". They've simply gone one step further.

Watch the ad here:



Part of me can see the humour they were trying to go for. They couldn't have used any other condition as none is so closely associated with the old 'headache' at bedtime saying but.... a)I don't think this is really a very funny advert and b)sadly this just perpetuates the myth of migraineurs as fakers. It says to the audience at home, migraine isn't really very serious, migraine is just one of those things you can use as an excuse to get out of alone time with your husband, to get out of work. Just fake it. Too many people do actually fake having a migraine and this makes life really hard for those of us who genuinely suffer.

Teri over at migraine.com has written to Sears, who own Kmart, to lodge a complaint.

What do you think of the ad? Would it still have worked if she'd said 'Surprise: I don't have cancer!'.

I might try to think of funnier things the Kmart advert could have done and send them over to their marketing department.....


Don't forget TONIGHT is Book Club.

Friday, 9 August 2013

Dropping out for the race: A review of 'On Being Ill' & 'Love and Other Drugs' by Amanda McDonald

Ladies and Gentlemen. 

I am so excited to bring you - ahead of time for once - a review of this months Migraine Monologues Book Club reading/viewing courtesy of the lovely Amanda McDonald. Do join us for an on-line discussion this Tuesday 13th. Details below. 

This month we've been reading 'On Being Ill' by the illustrious novelist Virginia Woolf, herself a sufferer of migraines, and watching the film 'Love and Other Drugs' - a love story about a young girl with early onset Parkinson's (which is less depressing than it sounds). 

Over to Amanda:

Dropping out from the race:
A review of Virginia Woolf’s ‘On Being Ill’ and ‘Love and Other Drugs’ by Amanda McDonald

The lovely Amanda

As a former English literature student and having written my thesis on Woolf, I was quite excited to be reviewing one of her essays for the Migraine Monologues Book Club. As someone who also indulges heavily in fluffy movie viewing, I thought it was going to be an interesting challenge to compare lightweight ‘Love and Other Drugs’ to migraineur, Virginia Woolf’s essay, ‘On Being Ill.’

In fact, despite the extreme intellectual contrast between the film and the book, one a little trashy and glossy version of illness, the other an intense and heavyweight treatise, I was struck by some commonalities between the two.

Most notably, both referred to the complete alienation of suffering from a chronic condition, and whilst Anne Hathaway’s Maggie Murdock treats her exile from the ‘normal folk’ of society with acerbic humour and breezy acceptance, Woolf succumbs to hers with increasing frustration and nihilism. When in the throes of a migraine, I am sorry to admit that I am definitely more of the ilk of the latter than the former. Woolf’s powerful language, describing the “wastes and deserts of the soul” that are brought into view by illness and her description of the way that ill people go “down into the pit of death and feel the waters of annihilation close above our heads”, certainly struck more than one chord with me. As a migraine sufferer for nearly twenty years, I have experienced the waters of annihilation on many an occasion (normally an occasion that required me to be alert, intelligible and on top form), and on a few, deeply memorable occasions, I have genuinely thought, without exaggeration that I was entering the “pit of death”. Horrifying my friends and husband, I have felt, most recently on a flight to Spain, that the migraine I was currently engulfed in, was such a powerful one, that it must surely end in death (it didn’t!). I was interested to read in the last book we reviewed ‘A Brain Wider than the Sky’ by Andrew Levy, that migraines can trigger this sensation, and that it is simply part of the bizarre brain manoeuvres that occur during the headache, and not some indication that I am a bit of a creepy drama queen.

Interestingly, Woolf talks about death as a state in which “the body smashes itself to smithereens, and the soul (it is said) escapes”. To me, my migraines have always felt like an assault from within. My body is doing its best to smash me to smithereens and all I can do is look on hopelessly. When I describe my migraines, I do often see them as separate from me, a murderous part of me that delights in attacking my head, my muscles, my nervous system and my digestive system and unleashes an arsenal of symptoms to try to destroy me (or in fact, just make that holiday more of a trauma than a retreat, and that business meeting a superhuman challenge). I therefore understood Woolf’s description of “those great wars which the body wages with the mind a slave to it” as representative of the almost daily battles that me and my head are engaged in. In fact, many of the holistic practitioners I have seen in my endless pursuit of a cure have tried to get me to embrace that part of me, to see migraines as a way of protecting me (but I don’t need to be protected from parties or holidays I protest!), or railing against my lifestyle (I have been living the moderate, routine-focused life of a ‘migraine nun’ for twenty years I complain!). One even asked me to personify the migraine as a dog that needed to be nurtured, fed and looked after. (I tried really hard, but during the first migraine, ended up sub-consciously beating the migraine dog to a bloody pulp, so not sure that worked!). Note: no real dogs were harmed in that psychological experiment. Anyway, I digress…

On reflecting on both the film and the essay, I would love to be able to relate to the cool, frank and accepting Maggie, and tackle my condition with sardonic humour whilst remaining effortlessly beautiful and admirably stoic. However, truthfully, I tend to feel more like Woolf, that I’ve “dropped out of the race” and am no “longer a soldier in the army of the upright”. And, sadly, when in the throes of migraine-induced misery, I don’t really find myself blessed with a superb and intuitive grasp of Shakespeare and poetic talent like Woolf, nor do I take solace, like Maggie does, in self-expression through art. Instead I find myself groggy, my instincts dulled and my brain capacity diminished (and that’s without the delightful Topamax). I find that ordinary tasks turn into Krypton Factor-style challenges, and that my battered brain is swimming in treacle whilst being repeatedly battered with a claw-hammer. (Woolf wasn’t wrong when she said that the “poverty of language” can’t describe our condition – we need a new language – “more primitive, more sensual, more obscene”). And, once you invite someone into the world of a migraineur, you do feel guilty – like you’re showing them a side of life that even you would rather not be privy to. Like Jake Gyllenhaal’s shallow-as-a-teaspoon Jamie Randall, you have to show them a darker, more shadowy world that at best gives them depth and compassion, at worst makes you look like a complete freak (anyone else puked in front of a date, or been found collapsed in a pool of your own vomit, still with sunglasses and a Kool headpatch on by the side of the road by your boss?)


So did I learn anything from the book and film? Probably not. However, what I did get from them was the sense that I am not alone. Although migraine is not a terminal or degenerative disease like Parkinson’s, it does sledgehammer its way through your life in a similar, unwelcome and often terrifying manner. It also creates the same, alienating feeling that Woolf so eloquently describes in her essay. And, if Virginia Woolf feels that language is inadequate to describe what she feels, then I certainly won’t feel bad when I try to describe my migraine like “one of those teddy-grabbing machines in an arcade gone rogue”. So, all that’s left for me to do now is take up a creative hobby…Wish me luck!

Amanda is the director of an advertising agency and lives with her husband in Stoke-on-Trent. She has been a migraineur for twenty years, latterly lapsing into chronic.
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Thank you Amanda for such a personal, thoughtful and insightful review. I'm looking forward to picking your brains more about Woolf's life! 

I must confess I haven't yet finished 'On Being Ill' but so far I'm finding it incredibly resonate and moving. I'm now dying to re-read some of Woolf's work looking for clues of her chronic illness that she so beautifully, and explicitly, writes about in this short essay. I'm also slightly haunted by the continual image of water, which Amanda highlights above, as we all know that Woolf drowned herself. If you're not sure the essay is for you - let me share (again) the passage that I shall be pinning above my desk: 

"English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. It has all grown one way. The merest schoolgirl, when she falls in love, has Shakespeare of Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and langauge at once runs dry. There is nothing ready made for him. " p.g 6


We'll be 'meeting to discuss the film and essay on 
Tuesday 13th August at 6pm (UK) and 1pm (USA). 
To join in: 

DIRECTIONS TO PARTICIPATE:
1. Click here to enter the chat room: MMBook Club (will open in a new window)
2. Enter Password: mmbookclub
3. Join in our incredible, life changing discussion! 
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