Sunday, 1 December 2013

NaNoWriMo Victory!

When I started out the NaNoWriMo challenge to write a 50,000 word novel in the month of November, a difficult challenge in itself but attempting this whilst working full time and suffering from chronic migraines, I had no idea if I would be able to do it or not.

The most important thing for me to ensure, was that I didn't push myself in attempting it and cause more migraines because of it.

This was assisted by the fact I had a week of holiday booked from work during November, but migraine thwarted half of that week for me even.

Over the course of the month, there were only 6 days where I wasn't able to write anything at all though, so through managing to write through pain on many of the days and managing to catch up the 7000 words I had fallen behind on the final day, I'm happy to say that I managed to write 50,035 words in total!

My story is about a young lady called Laura Layton who becomes the superhero called Striker.  She suffers from migraines and has to contend with this when she is crime-fighting.
I haven't quite finished the story yet but it will be finished in the next week or so and you can read it for yourselves at either or at my NaNoWriMo livejournal page.

Most importantly, I only undertook this difficult challenge to raise money for migraine research and support at The Migraine Trust.  My motivation through the whole month and especially on that final day when I needed to write that mammoth 7000 words, was to raise money for this important cause.  Please, if you can spare anything at all, I'd be very grateful if you could sponsor my NaNoWriMo feat.  If you are one of the wonderful, generous people who have already sponsored me, thank you, you made it all worthwhile!

Wednesday, 16 October 2013

NaNoWriMo and Migraines in Fiction

So as November draws close, my thoughts are turning to NaNoWriMo.  For those who aren't aware, NaNoWriMo is National Novel Writing Month, although it's actually an international event and has been for quite some years.  The aim of NaNoWriMo is to write a fiction novel of 50,000 words length in the month of November.

I first attempted this challenge in 2007, having only found out about it after it had started, and although I didn't finish my novel, I made it over the 50,000 word mark after about 25 days (and before the end of November) and was surprised at how much I enjoyed the freedom of writing fiction.
I wrote a zombie novel in 2008 and although I reached over 75,000 words, I didn't reach the end of the novel (again), but as my target for the event had been to reach 75,000 words, I was very happy nonetheless.

My migraines started in 2009 and life was too difficult as it was without throwing challenges like this at it.
Last year though, in 2012, I was unemployed at the time, and so I set myself the challenge of NaNoWriMo once more and happily, it was the first time that I actually finished the novel (with a whole 20 mins of November to spare!) at over 82,000 words.  That was a fiction set in J K Rowling's world of Harry Potter called Muggle-in-Law and you can read it for yourself over on

This year, will be my biggest challenge yet.  This will be the first time I will be attempting NaNoWriMo, whilst suffering from migraine AND working full time.

I don't think anyone who doesn't suffer from a similar condition, which requires so much daily management even when not suffering from the episodes at the time can understand why this is such a huge challenge.

My stubbornness is what has made me achieve my targets every time I've attempted NaNo but I need to balance this side of my personality this year to make sure that I don't push myself too hard to hit those daily wordcount targets.
Last year at one point I was writing through blinding pain, determined to hit my wordcount target for the day before succumbing completely to the migraine.  This wasn't clever and I certainly couldn't have done this if I had to go to work the following day, so I need to make sure I keep my stubbornness in check for the sake of my health and my work.

When I was considering what to write about for my novel this year, one theme stayed with me through all the ideas I played around with.  That theme, was that my main character was going to be a migraine sufferer.

In all the fiction I have ever read, and I've read quite a lot, I have never read a book, or a short story, where a character suffered from migraines.

This doesn't mean that my main character's life will be limited in the same ways as my own.  I'll be writing her as a frequent sufferer, but not chronic.  I have decided that I want to write about an extraordinary person, who is afflicted by this.  The migraines won't be the story, they will be something which gets in the way and limits my main character, something which interferes with the story in the way that migraines are not mine or my fellow sufferers life, it interferes with out lives and gets in the way of our own life stories.

I also want my main character to achieve great things, despite migraines.  I think anything we manage to achieve in our lives when we are afflicted by this horror is incredible and since it's fiction, my main character is going to be even more incredible.

So, my 2013 NaNoWriMo novel is going to be about a migraine-suffering superhero!

She won't have superpowers per say, but she'll be a masked vigilante crime-fighter who has a natural talent for it all that she feels she has to use as a force for good.
Migraines aren't something which gives her any kind of advantage, no super-powers, no sixth sense.  Instead, migraines are going to stop her in the middle of a fight, cause her to let the villain get away instead of pursuing them and that type of thing.

I intend to publish-as-I-write on and I will  be blogging about my writing as I usually do on

I hope you'll read my novel and enjoy having a main character be kick-ass as well as a migraine sufferer!

Sunday, 22 September 2013

When in Pain, Distract the Brain

Distraction is a massive part of my migraine experience.

When I'm in the unrelenting, agonising pain, the only thing which prevents me from going completely crazy is distraction.  Without distraction, the whole world is pain and every second feels like an hour.

The only way I've managed to find to cope with the pain, when I'm waiting for my meds to kick in or when the meds have failed me, is to distract my mind as much as possible.  As much as possible in this case, is still pretty limiting.

If I'm not being too affected by light, then I put the tv on and watch something which requires very little brainpower, like Hollyoaks or Charmed.  As long as it's entertaining enough to distract me but doesn't need to to think about what I'm seeing then it's good enough.

If the light is a problem, or when the pain wakes me in the night and I need to try and sleep as soon as possible to escape the pain and allow the meds to work, I have a different tactic.  This tactic has been greatly improved by a recently purchase as well.

In those times, I put on an audiobook of a book I've read before.  This means that the story distracts me but I don't have to concentrate on it as I know what happens.  I have devices loaded with audiobooks of books I've heard before right next to the bed at all times.
The problem I was having though, was that my big headphones only allow me to lie on my back to use, and since I'm normally trying to relieve the pain my pressing half my face into the edge of the pillow and I'm squirming around then they don't really work and in ear headphones just fall out of my ears.  But now I finally have a great solution to my headphones problem, now I've bought myself some SleepPhones.

SleepPhones are headphones which are inside a fleecy headband.  I wondered before I got them whether they would be as comfortable as they looked and whether the sound quality would be good enough to listen to audiobooks and I'm very happy on both counts.  They are my new migraine distraction saviour.

My mind has turned to the issue of distractions today as I have an appointment at the hospital for my eye problem tomorrow afternoon and last time I had an appointment there I was mid-migraine.  The drops they use to dilate my pupils dilates my vision for 4-6 hours afterwards and I remember vividly the last time how much I needed the distraction.  I was lucky enough for a friend to accompany me and talking with her during all the waiting really helped with distracting me when I was there but as soon as I got home and I didn't have a distraction without my vision, I was just in tears as the pain was taking over everything and I couldn't think through it or beyond it.  This time, I'll make sure an audiobook and my SleepPhones are set up ready so that as soon as I get back they'll be there in case I get struck by migraine again this time.

I really feel for the migraine sufferers who are so sensitive to sound during a migraine that they can only bear a whisper, as they won't have the audiobook option I know that I can always use and the pain just feels like it's ten times worse when there's nothing but the pain filling my head.

I'd be interested to know what other migraine sufferers use as distraction techniques whilst they have a migraine.  Please let me know in the comments!

Thursday, 5 September 2013

Migraine Awareness Week 2013 - Les Miserables: “I Dreamed a Dream”

Today's musical inspiration comes from Les Miserables (a good one to thing to watch if you're feeling terrible as it reminds you things could be worse!!) with the iconic song 'I Dreamed a Dream'.

Today's Prompt is: Les Miserables: “I Dreamed a Dream”

Today, for the last blog post of Migraine Awareness Week 2013, Victoria has asked us what our fantasy dream, migraine-free day would be; a day with no limits as a perfectly healthy person.

Believe it or not, this is actually the hardest blog post of the whole week for me.  Trying to think about what I would want to do on a dream day as a perfectly healthy person is just so far outside of the realms of things I'm normally thinking about, so far outside of the box so to speak, that I've been finding it really hard to think of what I would want to do.

I think first off, the perfect day would have to include a lie-in.  I don't get to have a lie-in, even at weekends as I have to maintain my sleep routine very strictly to minimise my migraines normally, so having a consequence-free lie-in would be wonderful.  Followed by a cup of tea and breakfast in bed of course.

The thing I find I'm least able to do with my migraines normally is anything very physically active, so if I was perfectly healthy, and the world is my oyster, then what I would ideally be doing would be playing a game which is physically demanding in London like The Go Game or Zombie LARP.

I'd then gorge myself on masses of cheese and chocolate for lunch, not caring about eating the classic migraine trigger foods only in moderation and I'd have a slice of lemon in my earl grey like I used to but as citrus fruits are a common migraine trigger I don't anymore.

I'd then love to go shopping with unlimited money (we said fantasy, right), something which I usually find very exhausting and migraine triggering.  I'd have someone else there to carry all the shopping of course, but I'd buy my fill of board games, comics, figurines, crafting supplies and even some clothes too!  And I wouldn't be worrying about keeping myself mega-hydrated the whole time too.

I'd then love to spend the evening with lots of friends, getting drunk (as I can't drink alcohol at all as it's a major trigger for me) and dancing the night away, staying up late (something I can't normally do) and dancing to all my favourite music the whole night, ideally at a roller disco (yes I can still skate whilst drunk as I've proven at roller discos before I had migraines).

Yep, that sounds like a pretty incredibly amazing day to me!

Thinking about the ideal day and all the things I'd love to do that I just can't because of the curse of migraine just ends up making me sad though.
Instead, I like to think about things I'd love to do which are more realistic and make the plans, contingencies and take all the measures needed to be able to do them, like I did for LeakyCon last month.

So that brings an end to Migraine Awareness Week.  If you want to find out more about migraines and headaches, The Migraine Trust are a fantastic resource and The National Migraine Centre don't require a doctor's referral to book an appointment with and they also have some fabulous resources.

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.
The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.

Commitment Issues

I have to admit, and those who know me will surely know this already, I have serious commitment issues.

Not to my (long-suffering) husband of course, I'm utterly and completely committed to him.
But in every other aspect of my life I really struggle.

I had to leave the choir I was a member of at the beginning of the year, as I was finding I was missing about 50% of the rehearsals once I was working again as well.  I just couldn't commit to making weekly rehearsals and in a 20 voice choir, that made a difference.

I tried to commit to weekly board game evenings with friends, or a weekly roleplaying game over skype with a friend where I used to live, but I had to cancel so often I felt like I was messing everyone around so much of the time that I'm not even trying to do those things anymore.

Every time I have to cancel on a friend because of my migraines, I feel like the worst friend in the world and I wonder why people even bother still inviting me to things, why they bother to be my friend when I'm so horribly unreliable.

I book tickets to things which need to be booked in advance with such trepidation, weighing up the cost of the ticket with the likelihood that I will have to cancel and be completely out of pocket, as well as letting down anyone else I was going with.
I can't even book a table in a restaurant for my husband's birthday which is only two days away.

Whenever I do manage to go to something I've had to book in advance, it feels like a massive achievement, something to be celebrated!  Like I've climbed the mountain of commitment and truly conquered it.  Then when I end up failing to make my next commitment, it feels all the worse.

This week, in an attempt at finding a fitness activity that me and my husband would both enjoy and that I felt I was able to do, we have booked some lessons in learning to climb.  They're booked for two hours in the evening for four consecutive weeks starting in a couple of weeks, and I'm nervous already that I'm not going to be able to make this commitment.  To manage to be well enough, not only to go to something, but to be active and alert as well, for four weeks on the trot just seems inconceivable.

I have commitment issues, but I'm trying to carry on living life despite it.

Wednesday, 4 September 2013

Weekend Migraines

I've been suffering a lot recently from the widespread phenomenon of Weekend Migraine.

For me, this manifests in the migraine starting to build from Friday early afternoon and reaching the effective treatment window by about 10pm-midnight.  Sadly by that time I'm usually already knocked out by one of the preventative meds I take making me unable to take meds for the migraine until that window has passed and the pain is so great that it wakes me (trust me, being woken by your brain feeling like it's exploding inside your skull is a really horrific way to wake up).

The irony of not being able to take my attack meds in the right window because of my preventative meds is not lost on me.  As a result I end up losing my whole weekend to migraine.

The Migraine Trust have a factsheet about Migraine Triggers which goes some way to explaining the weekend migraine phenomenon.

The crux of it for my own weekend migraines I believe, is my body's way of managing to push through the things it needs to.  This has proved to be the case when I've handled way more than I normally could and still been unscathed by migraine until after it's over, both fun things like geeky conferences or my wedding and not fun things like work.

So essentially I manage to push myself through my week at work, and then as soon as it's over I'm hit with a migraine.  By the time I then go back to work, in a haze of Migraine Hangover, I haven't had the break I should have had and I find myself again, pushing through the week at work, to be hit my migraine as soon as it's over.

You can see the cycle here.

This weekend it's my husband's birthday and I really don't want to ruin it by being out for the count with migraine yet again! The solution I've come up with, which I desperately hope works, is to take Friday afternoon as a flexitime half day off. I'm hoping this will kick my body out of the routine and either, ideally, not trigger a migraine as a result, or, more likely, trigger the migraine earlier and allow me a chance to treat it in time to abort it and allow me to be reasonably fit for the weekend.

Wish me luck! Oh, and wish my husband a happy birthday with a migraine-free wife!

I'd be interested to hear from other migraineurs in the comments if you also suffer from the curse of Weekend Migraine.

Monday, 2 September 2013

Migraine Awareness Week 2013 - Evita: “Don’t Cry for me Argentina”

The musical for today's prompt is Evita, an Andrew Lloyd-Webber classic which was immortalised famously on film by Madonna in the title role.

Today's Prompt is Evita: “Don’t Cry for me Argentina”

Victoria has asked today about what we want from other people; whether we want empathy and understanding, sympathy and whether we ever want to NOT talk about our migraines.

You probably wouldn't think it from my blog, but I didn't used to talk much about my migraines.  People knew I had them, people knew I cancelled on them.  People even saw me have to ruin parties and hide away in other rooms and leave everything early.  I didn't really talk about how they affected my life every day, I didn't really tell them the extent of them.  I didn't ever talk about what the pain feels like or how much it's ruining mine and my husband's life.  I put on a brave face.

I guess the main reason I didn't talk to people about it in this way, and indeed, why I still only tell people through the medium of my blog and not face to face, is because I don't want to feel a burden on people, I don't want to just be complaining to people all the time, I don't know what reaction I would actually want from people if I did.

Would I want people to try and empathise?  I think that would be very difficult to do and I'd probably just feel like they didn't understand at all if they did.
Would I want people to pour sympathy on me? I think that would just make me feel uncomfortable to be honest.
I want people to understand, and I want to tell them, but I want them to understand without any feeling of obligation in a response really.  There isn't anything they can say which would make me feel better.  When people try to fix my problem by suggesting things I should be doing, I find that so much more annoying than I know I should.  But on the other hand, I wouldn't want what I was saying to be dismissed as thought it was nothing.  So I really don't know what response I actually want from someone; I find it on the whole much easier if I point people towards my blog, hope they read it and understand better for it.

Maybe what I want is for people to be as annoyed at migraines as I am, but then I think it would feel as if that anger were directed towards me rather than the thing I'm being afflicted by which I think of more as a parasite feeding off me and my life.

I guess anyone I talk to in person about my migraines is in a catch 22 when it comes to their reactions really, but the most important thing I want from people is for them to listen.  And when I make cracks about things such as 'it could be worse, I could have cancer' and the like, please realise that migraine is actually stealing my life away from me and any comments like that are just my way of trying to not make you feel uncomfortable about it.

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.
The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.

Migraine Awareness Week 2013 - Rent: “Seasons of Love”

Today's musicals reference is from my best friend's favourite musical, Rent.  I've never had the fortune of seeing it on the stage but she was quick to lend me the DVD as soon as she found out I hadn't seen it and today's song reference is the only one I can actually remember from it.

Todays Prompt is Rent: “Seasons of Love”

Or you might know it better if I say 

"Five hundred twenty-five thousand six hundred minutes"
Today, Victoria has asked about how many days we've lost to Migraine.

I believe there's two answers to this question and I've got no way of answering one of them.
There is the amount of days directly lost to Migraine itself, how many days I've spent in the agony of Migraine pain.
Then there is the amount of days lost to Migraine indirectly. The number of days I've been extremely delicate, trying not to re-trigger a migraine I managed to abort and the number of days I've had to rest and not do what I've wanted to do because otherwise a migraine will trigger.

I can answer the first question, how many days I've lost directly to migraine, as I have been keeping a migraine diary to track these since the beginning of 2010, a couple of months after they first started.

  • In 2010, when my migraines had only just begun and I knew almost nothing about them, I lost 67 days to Migraine.  That's 18% of my year lost to Migraine, almost 1 in every 5 days.
  • In 2011, which has been my worst year for Migraine to date, I lost 102 days to Migraine.  That's 28% of my year lost to Migraine, about 1 in every 3.5 days.
  • In 2012, I wasn't working for 6 of the 12 months which greatly reduced my migraines meaning I lost 75 days.  That's 21% of my year lost to Migraine, more than 1 in every 5 days despite this being a big improvement.
  • At the end of August in 2013, so two-thirds of the way through the year, I have lost 64 days to Migraine.  That is 26% of my year so far, more than 1 in every 4 days and almost as many days lost in two-thirds of the year as I lost in the whole of last year.

As for the rest of those days, if I had to estimate, I'd say about 90% of the remaining days I have been taking drastic measures to avoid migraines, i.e. not being able to do any of the things I want to be doing, or already in a lot of head pain, just not migraine pain.

You can see why I feel like Migraine is stealing my life and why it feels like I get to spend so little quality time with my husband.

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.
The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.

Migraine Awareness Week 2013 - Mamma Mia: “Money Money Money”

Today's blog prompt musical is Mamma Mia which my Mum and I went to see without knowing it was such a Mother/Daughter show beforehand so I remember that trip fondly :)

Today's Prompt is Mamma Mia: “Money Money Money”

Specifically how migraine has affected my finances.

Migraines have heavily impacted my finances.  The largest way it has had an impact has been on my earning potential as I have been forced to leave the career path I was on which was as a Project Manager and go back to being a systems support analyst, more than halving my income.

I obviously spend a lot of money on the prescriptions for all the medications I am on, both preventative medications and the ones to treat the attacks themselves.  There are a lot of other ways in which migraine affects my finances but I went into that in a previous post in June for the American Migraine Awareness Month so if you'd like to read more about it then please read my post from then.

I do however, feel grateful that I don't live in the USA and have limitations on how many medications I can have imposed by an insurance company or have insurance refused and have to pay for all of my medications.  I don't believe the NHS system is wholly right though.  For cases of a chronic illness which doesn't have a cure or isn't going to go away, such as migraine, I believe that prescriptions for that specific illness should be free on the NHS.

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.
The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.

Migraine Awareness Week 2013 - Little Shop of Horrors: "Feed Me, Seymour"

Today's blog prompt is in honour of one of my favourite musicals, The Little Shop of Horrors.  If you haven't seen it, go and watch it now!

Today's Prompt is Little Shop of Horrors: "Feed Me, Seymour"

For today's blog, Victoria has asked about whether we have any migraine comfort foods or whether we follow any special eating plan.

I confessed in a previous post how the only food I can usually bear to eat during a migraine is a McDonald's McChicken Sandwich.  Not exactly healthy but everything you think about eating just turns your stomach then you eat what you can.

Sometimes I'm able to eat normal food during a migraine, although every bite has to be forced down.  Sometimes all I can eat is some raw baby corn.  Trying to force myself to eat during a migraine is a battle I face all the time and a stress my husband has to go through every time as well.

With regards to a special eating plan, the advice I received from The Headache Clinic at the hospital is to eat little and often to try and level out my blood sugars as simply missing a meal can be enough to trigger a migraine.  I don't have a large, or even an average appetite though.  In order to try and achieve this I often have to force myself to eat even if it makes me feel sick making food more of a chore than a pleasure.

I haven't found any particular foods themselves to be trigger foods for me but the types of foods which are common triggers I try to have only in moderation in case an excess of them causes a migraine for me, and I've definitely found that alcohol (and sadly, in particular beer) is a trigger for me so I'm pretty much teetotal as a result.

Food feels like more of an enemy in my life than something sustaining me but I hope my relationship with food gets better in the future.

Photo by bumblepufff

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.
The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.

Migraine Awareness Week 2013 - Carousel: “You’ll never walk alone”

Today's musicals prompt is one which I haven't actually seen (there are some which have escaped me, just not many!) and that's Carousel.  The song is one more associated these days with Liverpool FC so far I'm concerned, but that might just be my Mum's influence!

Today's Prompt is Carousel: “You’ll never walk alone”

Victoria has asked who we get the most support from in our lives and how we manage to not feel alone.

I've spoken in some length before how I get the most support from my husband; I really believe that no-one else in the world knows how my life has changed since migraine came into it and just what it costs me, with respect to not only the pain I go through on an almost daily basis but in all the things I'm not able to do which I'd like to.  If you'd like to read just how much his support means to me then read the letter I've linked to which I wrote to him in June.

I've been lucky enough to get some more daily support since I wrote that letter in June though.  A friend of ours has temporarily moved in with us whilst she sorts out somewhere more permanent to live and as someone who instinctively plays the hostess, I was worried before she moved in that I might find that an extra strain.  I had to consciously force myself to not hostess her when she first moved in and it didn't take her long to understand what I needed in order to try and stay healthy and she quickly started looking after me in the small ways that make a big difference and she realised that if she asks if I need help I always say no so she just does things to help instead, very wise!  This summer would have been much harder without her, so thank you Lali!

My other friends, who don't see what I deal with on a daily basis, are understanding better these days which I think is partly because I made a conscious effort to talk about my migraines more (they're probably sick of hearing about them now) and partly because of this blog which has allowed me to explain things in a much clearer way that I ever would in person.  This means when I have to say no to being able to do things, they understand why and when I have to cancel at the last minute or leave early, they understand why and that understanding makes a big difference.

Lastly, and certainly not least, is the community of fellow migraineurs which I have found online.  I've talked about them before but it's amazing the world of difference it makes being able to talk to other people who really do know exactly what you're feeling, exactly what you're going through.  Not only that aspect as well but being able to talk about different things each of us have tried, what medications our doctors are using, what books we've found helpful; it's something I couldn't get from my GP or even from The Headache Clinic I go to at the hospital.

I feel very lucky to have all of this support and understanding in my life, thank you all.

Photo by Jacquiscloset on Flickr.

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.
The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.

Sunday, 1 September 2013

Migraine Awareness Week 2013 - Phantom of the Opera: “Masquerade” - Behind the Mask

So Migraine Awareness Week has now begun!  As previously mentioned, Victoria from Migraine Monologues has put together some blog prompts for us bloggers for this week.
She has based all of the prompts on musicals which is a theme I particularly love.

Today's Prompt is Phantom of the Opera: “Masquerade” - Behind the Mask

For this post, Victoria has actually asked for fellow sufferers to send her photos of themselves during a migraine and on a non-migraine day for comparison.  If you really want to see a highly embarassing photo of me in massive amounts of pain then go and take a look at the post on her blog.  I took the photo as a selfie and stopped clutching my eye to show my whole face.  There really is very little to see there to represent the level of agony, the explosion of pain happening inside my head, how much it feels like gouging out my own eye would manage to relief the pain, how it can sometimes feel that I'm dying.
So although Migraine is an invisible illness, I put on a mask to hide the pain I'm in for a large amount of my time.  A lot of the time between migraines I'm still experiencing what most people would class as a bad headache and I'm not allowed to take anything for them else I'll fall into Medication Overuse Headache.  The mask (or as I've talked about before, The Brave Face) has become something I put on in the morning in the same way as I put my clothes on.

Even though I'm quite adept at hiding how much daily pain I'm in, the signs that something beyond a daily headache is growing slip through which is evidenced by my husband often being able to tell before I can that a migraine in on its way.  This isn't just how I look (like when he notices I'm holding one side of my head or one eye) which gives me away but how I'm acting and how I'm talking.

What is impossible to gauge from photos is how speech seems to elude me when I'm suffering from a migraine.  It's a struggle to get any of the words I want to say out, and my speech becomes slow, broken and slurred.  That's impossible to hide from people and I reached that point at work once - I had to hide in an office which wasn't being used at the time, with the lights off and I sat on the floor in a corner.  One of my colleagues stayed with me whilst I waited for a friend to come and pick me up and she saw and heard me in migraine for the first time.  I was incredibly embarrassed and when I had to walk past my office to leave when my friend arrived, I was just desperate for none of them to see me in the state I was in.  Embarrassment for something completely outside of my control might seem like an odd emotion but it was the inability to keep the mask on which was so horrible.

It wasn't until during this last month that I realised how normal it is for me to put on my mask, when I had people comment at how I had coped so well to be completely fine during an extremely busy and stressful week at work, when in fact I was dealing with a massive amount of pain at the time and felt anything but fine.

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.
The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.

Month in Review - August 2013

I'm not sad to see the back of August.  This month has felt like a few steps backwards.

The month got off to a bad start when I had to leave work at lunchtime as the migraine was coming and there was no way it would hold off until the end of the work day (as they often do) before debilitating me.  Sadly my meds didn't abort it and it returned the following day which meant riding it out without anymore meds and a full day of work missed the following day.

A very painful right-sided headache on the following Monday (5th) felt like it was going to head into a migraine but thankfully it didn't and I enjoyed a pain-free day the following day which was just as well as I needed to dye my hair pink that evening (or rather, my lovely housemate Lali dyed it for me) and sort out all my packing for LeakyCon, which I hadn't intended to leave until the last minute but pain had prevented me over the weekend and the day before!

LeakyCon felt like it was going to be the big test for me, with travelling down to London on the Wednesday (7th), spending hours in Leavesden Studios on my feet, then 4 days of the conference itself was all a recipe for Migraine as far as I was concerned.  Although I suffered with pain throughout, worst of the first day of the conference, I used everything in my power to mitigate the migraine risk, with eating little and often, drinking almost continuously, taking breaks and missing programming when I felt I just needed a rest, and not making it to any of the evening events, I managed to survive it without a migraine which felt like an absolute miracle (especially considering how things there seemed to be against me).

Getting through something like LeakyCon without a migraine and with the previous migraine (which started on 1st August) happening a massive 11 days after the one before it, I was starting to feel invincible!

I knew August was going to be a challenging month though, with not only LeakyCon to survive but with an extremely busy and stressful month at work, the biggest day of which was planned to be on the 20th, so having made it through LeakyCon without a migraine, I was then hoping I could make it through the work stress to come without the accompanying migraines.

All through the week at work after LeakyCon I was expecting to be hit with a migraine.  It had been so long since the last one and I had done so much in that time too.  It held off until the Friday though (16th).  It built up very slowly through the day and by the time my prevention meds knocked me out at 9pm, it still hadn't reached the window where I should be taking my meds.
By 1:3am the agonising pain had woken me up and I was able to take my attack meds.  They didn't take effect until about 4am as I had missed the right window to take the meds in.  Consequently, the migraine returned the following day making my whole weekend a complete write-off.  On the Sunday I genuinely felt like I was dying and I had to wonder if the longer gap between the migraines makes more a more intense migraine.  If that is indeed the trade-off, then I'd choose the less frequent and more intense migraines as I get a little of my life back in between them when the gap is longer.

I was battling pain on the Monday then, the day before The Big Day at work but I was coping.  The Big Day (20th) arrived and I suffered throughout it pretty badly but I made it through.  I continued suffering a lot with pain for the rest of the week, though it lessened a bit towards the end, but it couldn't last and on the Friday it came on a LOT quicker than they normally do - normally they take many hours to slowly build but this time it was more like 30 mins.  I managed to drive myself home but it took everything I had and I couldn't even get myself from the car to the door on my own.  I dosed up on my meds but I was very worried about the plans I'd made the following day (24th) to see my Mum who was going to be in York.  I reduced the plans to just meeting her for lunch but the 90mins of that was enough to re-trigger the migraine and wrote off the rest of my weekend.

Daily headache has been back in full force for the past week following that migraine without any let up and when Friday came I could feel the migraine building in the afternoon.  Once again I was scuppered by my preventative meds knocking me out by 9pm meaning that I slept right through the window for me to take my attack meds and the pain woke me shortly after midnight.  The fact that the meds then took several hours to work indicated that I'd missed the window and once again, another weekend written off to the full three days of migraine.

I knew August was going to be a tough month but it felt worse because July had been such a good month.  A lot of the problems with August have been the return of daily headache causing a real problem for me and none of my migraines being properly aborted at the start of the migraine.

Tuesday, 27 August 2013

Coming Soon - Migraine Awareness Week!

Every year the fabulous people at The Migraine Trust promote Migraine Awareness Week which will be happening from the 1st to 7th September this year.

You can follow the conversations of the week by using the hashtag #morethanjustaheadache which epitomises the message from The Migraine Trust.

For my part, I shall be following the lead of the wonderful Migraine Blogger Victoria of Migraine Monologues as she has used the inspiration of the blog prompts from the American Migraine and Headache Awareness Month in June to create her own blog prompts for Migraine Awareness Week.

The first of these prompts will mean that I will be, terrifyingly, posting a photograph of myself, onto the internet (which as we all know is forever) during a migraine.  I never had any inclination to photograph my pain but did in my most recent migraine especially for that post. Read at your peril!

Furthering my immortality onto the internet, I'll also take this moment to tell you about the Travelling Diary which is a project run by The Migraine Trust.
There are, in fact, several diaries, all of which are sent out to migraine sufferers all around the UK who then fill in two or three pages of words they wish to share with other sufferers.
All of the entries are then published on Flickr for all to see.
I was sent the diary myself and filled it in on the 2nd of June this year.  You can read the entry for yourself if you're interested in seeing what I wrote.

For now, so long, and you'll see me soon blogging for Migraine Awareness Week!

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Sunday, 11 August 2013

Invisible Illness Problems at LeakyCon

I've just spent the last 4 days having a fantastic time at a Harry Potter conference called LeakyCon (so named because it is run by staff from I'm elated that I managed to survive the whole thing, from leaving York on Wednesday lunchtime through to arriving back there on Sunday evening, without being struck by migraine.

I hope that a large contributor to this lack of migraine is because my new preventative is doing its job but I also know that my own Constant Vigilance in preventative measures was also a huge factor in this.

Wednesday, the first day, involved a 4 hour journey to Leavesden Studios for a special private opening of the Studio Tour. I've never known what it is about travelling which triggers migraines in me (or rather, that lowers my migraine threshold) so it's hard to take preventative actions but I did the best I could and with the tour itself starting at 6pm we didn't finish until 10pm which meant not reaching my London hotel until about 11:30pm - very late for me since I started on the amitriptyline and a regular sleep pattern is also important.

Knowing I'd pushed my luck so much on the first day meant that I approached the rest of LeakyCon as cautiously as possible. Unfortunately, it felt as though LeakyCon made this as difficult as it could for me.

The opening ceremony, I was dismayed to see when I walked in the room, appeared to be standing room only. The chairs had been removed as there wasn't enough space for all of the attendees to be able to be seated for it. This screamed of poor planning and I felt my head pounding harder at just the prospect of trying to stand in that crowd to barely see anything (I'm not exactly tall!)

Thankfully, there were actually some chairs and I'd arrived early enough to find a few of them were still free, but they were off to one side with a terrible view of the stage with lighting equipment in the way. But I was seated thank goodness. What would I have done if there hadn't have been any seats free? How do I explain to strangers with no knowledge of migraine that I need to have a seat to prevent losing the next day or more to migraine?

The opening ceremony itself then contained a very liberal serving of strobe lights and lights which swung about on the crowd so would flash in my eyes. Not great when I was already sailing close to the wind! For the sake of the rest of the conference, I therefore spent the majority of the opening ceremony sat with my eyes closed and a poor view when I did open them.

Had there of been warnings for this light show component, which there weren't, I would still have gone in I'm sure. I just wish they'd think of the fact that no seating and lots of flashing lights are bad for many invisible illnesses.

The conference I then found, was spread over a few floors in the venue: the ground floor, the 3rd floor and the 4th floor. This meant a lot of going up and down stairs between programming and due to the fact that the venue rooms weren't large enough to cope with demand, it meant needing to move in a hurry to be able to get a seat in the room I was heading to. Without a seat, I would be unable to attend the programming but these considerations weren't taken into account at all.

The worse moment in the conference for me though, wasn't the fact that I had to miss both of the evenings of Wizard Wrock because I was too tired, or missing the Ball because I was too tired, it was instead an incident which actually brought me to tears during an event I'd been looking forward to for a year. I was waiting, on my own, for the only lift, as I knew my energy was running very low for trekking up the 4 floors on the stairs. I was told by one of the people running the event that I wasn't allowed to get the lift anymore as they needed to use it exclusively for those with mobility problems.

This hit me like I had been physically thumped in the stomach. I'm the typical English person who is non-confrontational and always follows instructions from the authority of the circumstance, and I almost bit my tongue on this but instead I replied "What about people with other health issues?".

She looked at me and simply replied "You can't take the lift, you have to use the stairs.".

At this, I did then turn around and used the stairs, and it was the climb which brought me to tears. The fear that this was the final straw which would cause a migraine to ruin the rest of the conference, and the physical difficulty I was feeling in my umpteenth journey on these stairs. I blocked the stairs substantially as I had to take the climb so slowly and those coming behind me found it difficult to overtake for others coming down.

This just left me feeling so frustrated at having an invisible illness. Was it not enough that I had to miss out on highlights of the conference programming (the evening events) as well as having to miss programming I wanted to go to because I just needed to take a hour or two to rest as going from session to session was exhausting me? Was it not enough that I had to purely listen to most of the opening ceremony and constantly have to be aware of my threshold levels throughout the conference to be able to make it to what I was capable of managing?

I felt marginalised and frankly trodden on during an event which should have been a highlight of my year, and I felt this was mostly because my illness is invisible and because people don't understand migraines, as I didn't before I became a sufferer myself.

I have to say, it was poorly set up for the wheelchair users too, who had to state in advance their plan of sessions for the day as so many rooms had stairs so that porters could pick them up and put the ramps down for them in the various locations, which meant they had no flexibility in changing their plans and they often arrived late for programming too.

I wonder if events like this should ask for any relevant health information when you register so that they can ensure that those with illnesses they can't see, as well as those they can, aren't treated poorly for it being invisible.

Saturday, 3 August 2013

Small Milestones

So I think it's really important with a chronic condition to really recognise the small milestones because they're actually really big and positive things in that scale.

I had my latest migraine come upon me on Thursday meaning I had to go home from work at lunchtime and my meds didn't abort it so I had to miss work on Friday whilst I rode it out as well.

This felt really bad, not only missing work but also having my meds fail again when they'd been pretty reliable for a while, but I've decided not to focus on these things and instead celebrate the really good things to come out of this.

Great thing number one: I had managed over six weeks at work without missing a day which is a fantastic stretch and something I'm really pleased about.

Great thing number two: It had been a whopping eleven days since my last migraine!! I hadn't had a gap this big between migraines since March and they've been gradually decreasing since the end of June so this gives me a lot of hope on migraine frequency going forwards.

Great thing number three: Although the meds failed to abort this migraine, they work on the majority of them which means I'm able to be in work so much more than I used to be before I found the right triptan for me.

I had to cancel plans to see a show I'd been looking forward to for ages in Leeds with friends and to see my family and nephew who I hardly ever get to see because travelling is a major trigger for me and they live so far away which was really disappointing and frustrating so I really need to focus on the positives of the milestones from this migraine and hope that things continue to improve for the future.

Thursday, 1 August 2013

Month in Review - July 2013

So July is over now and I must say, in comparison to recent months, it felt great!
Here's the breakdown:

There's a lot of colour in there but it's not all bad.  The yellow is holiday and the lighter the colours the better and overall it's a pretty light-coloured month.

The first week of July was a very welcome relief from the daily headache I've been suffering so badly from the last couple of months.  Although it wasn't a pain-free week, most days were pain free and that felt fantastic!  The evening of the 5th was a migraine-creating recipe with running around playing laser quest in the heat and a later than normal evening having a meal afterwards and yet no migraine.  The next day was spent in Harrogate at with a friend at craft workshops and yet despite all the exertions of the night before and all the activities of the day, there was still no migraine. In fact, not event a headache!  A trip over to see my parents the next day on the 7th (wimbledon men's final day!) proved a little too much for me though or rather all of these things added together proved a little too much for me, and migraine finally arrived.  Funny how when it's only a week since the last migraine it felt like it had been a long time as I'd had a chance to actually have a life and I'd had relief from the daily headache!  My meds worked though and I was ok (although delicate) by the next day.

I had a week off work from 8th-12th July with my husband where we didn't take the time off for anything other than just relaxing at home and playing some board games with each other.  It was exactly what I needed to just completely destress and get myself back on a level footing.  My head seemed to agree as I only had headache on one day in the week so it really felt like a rest.  Sadly the last day of the holiday marred this by striking me with migraine after I went to Harrogate for a workshop to learn to knit but as my meds worked (though they always leave me delicate for the next few days) then I was successfully at work the next day, albeit with a significant amount of pain returning.

In fact I think the biggest thing to notice in this particular month of review, is how there are no dates with the big black angry outline which indicates an absence day from work.  I made it through the whole of July without missing any work days at all!  Something that I hadn't managed since March!

That week at work (15th-19th) was a more difficult one, with pain more days than not and running a review day for my team on a sunny day in a pod surrounded by windows.  I was all things that would usually add up to migraine but it wasn't until the Sunday (yet again, another Sunday migraine!) that I was hit by migraine.

By this point in the month, the daily headache was returning a lot, with more days in pain than pain-free days again but incredibly, despite another long, tiring and hot week at work, the last Sunday I escaped migraine-free!  This meant that the Monday morning was then not spent feeling extremely delicate with migraine rattling the bars of the cage I'd put it in like the other Mondays all month, but in fact just a (relatively) minor headache instead.

Just three migraines in the whole month of July and some respite from daily headache has been an incredible improvement on the last two or three months and I'm hoping this is an improvement I can carry forwards if it's because of the amitriplyline.

If it's because of the week holiday of doing nothing but relaxing at home then I have to wonder if I need to factor weeks like that into my year.  I have another week like it booked for November but that seems like a long way away especially if it's going to get worse and worse until that point. So I'm keeping my fingers and toes crossed that it's the amitriplyline helping me now and that things won't get as bad as they were again.

Tuesday, 30 July 2013

MM Book Club - Love & Other Drugs

So for the Migraine Monologues book club this time we decided to take a break from trying to digest a whole book and set ourselves an easier task of reading the essay by Virginia Woolf (a migraine sufferer) called On Being Ill and a film to watch called Love and Other Drugs.

I watched Love and Other Drugs tonight before the book club discussion in a couple of weeks.  The film is a rom com about a womanising drug rep (Jake Gyllenhaal) and an early-onset Parkinson's girl he meets (Anne Hathaway).

With this being about Parkinson's rather than migraines, which is a degenerative disease which different challenges to migraines, I wasn't expecting it to have much relevance to my life and to migraines.

Turns out I was wrong

Maggie (the character played by Anne Hathaway) is taking a bucketload of pills every day to manage her symptoms and having a nightmare just trying to keep on top of getting the prescriptions from her neurologist and getting the prescriptions filled out at the pharmacy.  I struggle with this too and in fact just managed to pick up a big bag of my pills yesterday just before I ran out of some and just before my current pre-pay prescription card ran out.  Boots always ask me if I want to use their repeat prescription but how much of what meds changes so much this isn't practical, as I'm usually trialling preventatives and working out what dosage of things to be on and the meds for what I have an attack obviously depends on how many attacks I'm having as to when I need more of those.
I have a pill pouch which lives in my handbag and has a compartment for each day and one extra which I use for my attack meds and at 9 pills a day, refilling this pouch is a lengthy task every week and leaves me loathing blister packs as my fingers are actually sore by the end of popping all of those pills out of their plastic jackets.

I really felt for my migraine brethren across the pond when Maggie was organising a coach for fellow sufferers to take them all to Canada where the drugs they need are cheaper.  As much as I hate having to pay for my prescriptions on the NHS, at least with the pre-pay cards I know exactly how much I'm going to be paying and when no matter how many prescriptions I need and this part of the film really made me both appreciate this option here and still resent having to pay prescription charges for long term medications to treat my own incurable problem.

The Brave Face really stood out to me in this film as something I can very much relate to.  Maggie is putting on a brave face to Jamie (the character played by Jake Gyllenhaal) a lot of the time that they're together in their relationship as I've written about before, I put on a brave face so much of the time with so many people.  She said she has no energy and can't go out and do things and I very much related to this as well.  I feel I hold back my husband from doing so much with his time because I'm just not able to do things that other people do without thinking.  Even simple things like a trip to Tesco means that I can't do anything else at all in the same evening if I don't want to trigger a migraine and as someone who used to rarely spend a night in I find that one of the most frustrating things about my condition.

The part of the film where I really started to cry buckets though, was when they went to a medical convention and she found the 'UNConvention' across the road for Parkinson's sufferers.  People there were standing up and talking about the frustrations of their condition with a sense of humour and a real feeling of solidarity.  Those people talking about the way simple everyday things are just too difficult hit home a lot with me but Maggie's reaction after she left there of just feeling elated at meeting people who understand what she's going through on such a different level than anyone else possibly could.  She was so incredibly happy to just be able to talk to and listen to other people who suffered like she does and this is exactly how I felt at the beginning of this year when I found other sufferers on Twitter and it's a feeling I really can't describe very well.  I never imagined that there was this huge hole in my life until it was suddenly filled.

When Maggie breaks up with Jamie to save him to pain of having to be with someone suffering on an every day level like she does, I was feeling very much for my husband who never signed up to this when he met me and I had never had migraines at that point.  I have often thought and sometimes said to him that his life would have been so much better if I hadn't have walked into it but he has insisted that it wouldn't have been but I still can't help but feel this is case.

I'm really glad we had this film as a book club assignment and I'm tempted to ask others to watch it whilst bearing in mind my condition.