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.

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.

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.

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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