Sunday 16 June 2013

MHAM Blog Challenge defeat

As any regular readers will have seen, I have been attempting the Migraine and Headache Awareness Month Blog Challenge.

I was managing to meet this challenge by writing my posts in advance so that if migraine struck I was still able to continue.  I had managed to write a week's worth of posts in advance and I thought this would be enough.

Sadly, the past week has been a particularly bad week, resulting in me not even being able to attend my job for the entire week.

Having now posted all of the posts I had pre-written, it is with sadness that I admit defeat; I cannot manage to continue to Blog Challenge with a post a day as hoped.



I hope that I will be able to make some further posts before the end of the month, choosing the topics remaining in the challenge which I particularly like and I will of course continue my blog as normal, with my sporadic posts and monthly updates.

Thank you to those who have been reading this month, I hope you've found the Blog Challenge posts interesting and I encourage anyone who has to check the comments on any of the daily posts on FightingHeadacheDisorders.com where you can see links to other blogs participating in the challenge, hopefully with more longevity that I have managed.

So in the immortal words of Douglas Adams, so long and thanks for all the fish.


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

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Saturday 15 June 2013

MHAM Day 15 - Harry Potter

Today's prompt got me excited when I first saw it - Harry Potter!  For anyone who doesn't know me, I'm a huge Harry Potter fan!



The picture above is drawn by a very talented friend of ours, Stephanie Burrows-Fox and was used as one of a pair (the other at the bottom of this post) on our Hogwarts themed wedding invitations last year.

The details of the prompt then said that the idea is to create a Harry Potter spell to get rid of migraine attacks.  That's a little on the trickier side than just blathering on about Harry Potter as I could easily do all day.

Not being much of a creative wordsmith myself, I requested the help of my husband for this particular task.  He doesn't love the books as much as I do but he very much likes them and has taken a particular interest in how magic works in the world Jo Rowling created with a mind to being able to run a roleplaying game in that world, so I knew he was well placed to come up with a good spell.

He looked into the origins of the word migraine, like Jo Rowling did for so many of her spells.  A lot of her spells come from latin origins but she has created spells from many origins so I believe she will have researched the etymology of words related to the actions of the spells she wished to create until she found something she felt was right.

With this in mind, my husband looked into the etymology of the word 'migraine' and according to etymonline.com this is where the word comes from:
Late 14c., megrim, from Old French migraigne (13c.), from vulgar pronunciation of Late Latin hemicrania "pain in one side of the head, headache," from Greek hemikrania, from hemi- "half" + kranion "skull". The Middle English form was re-spelled 1777 on the French model.
He decided to take the 'megrim' origin form and combined this with the idea of minimising the migraine and created:


Megriminima

Maybe I should get one of my wands out (yes I have several) at the start of my next attack and see if it works!  I can see a new twitter hashtag coming from this one too...




June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Tuesday 11 June 2013

MHAM Day 14 - Letters to Juliet

Today's prompt is to write a thank you note to someone who has helped me.

So my post today is a letter to my husband Chris.


Chris,

I know that you never signed-up for a partner with chronic migraine when we met; I was healthy back then and neither of us had any way of knowing what was to come.

I can't imagine how difficult it must be for you to live with and support me through my condition with no end in sight for it.  So many of the plans we made together have never happened, so many of the things you want to be doing in your life and together with me can't happen or are constantly cancelled, never knowing day-to-day whether today is going to be a day when I'm down for the count or whether you might get to spend a few moment of precious quality time with me.

What I truly can't conceive of though, is having been through this without you.

You are my rock, who I can always rely on, no matter what.  I know your first priority is always my health, even if it isn't mine.  You have spent so much of your time and energy to look after me when I'm sick and to do everything possible to mitigate the migraines in the first place.  You even go and sleep somewhere else if that's what's best for me, without complaint or without me even needing to ask.  You spend so much more time and energy on making me happy and as healthy and looked-after as possible than you do yourself.

It would haven taken me so much longer to even seek treatment in the first place if you hadn't made me go to the doctors, and then keep on going back when what they gave me wasn't good enough.  My treatment would have been greatly set back from where it is now if you hadn't made me take that action as early on as you did and if you hadn't held my hand the whole way through.

You are my motivation to be healthy, you are the thing which gets me through each migraine and you are the only person in the world who understands me.

Thank you for being so amazing.  Some people have said they don't know how I manage to cope with my condition, but I do; I cope because I have you, in the bad times and the good times, always my samurai.

I Love You.

Daisy
xxxx


Monday 10 June 2013

MHAM Day 10 - Ocean's Eleven

Today's prompt is about the team behind my migraine treatment, my very own Ocean's Eleven.



Sadly I don't actually have a team of eleven behind me, not even half of that.

Things are much improved now than when I lived in Norwich at least.  When my migraines first started, the GP surgery I was a member of was terrible at trying to help me; the only things they did well in my opinion, was diagnosing it as migraines pretty quickly.  It was a combination of the terrible support I was getting from them combined with things worsening at work than made the migraines become as bad as they have.

Thankfully, when I moved to York two years ago, my GP here has been marvelous!  He listens to me, he seems to genuinely care, he researches and he knew the best thing to do almost straight away was to refer me to the headache clinic in the neurology department at the local hospital.  I see him an awful lot still, some of those times have been in tears, actually a lot of those times have.  Many of the visits have been to get sick notes for work which meant having to be there with a migraine and in a situation where I knew my work were very upset with me, and he always made things seem much better by the time I left and never ever once quibbled that days and days long migraines make one unfit for work.

So he's been my medical rock for two years now - Dr Fair at the Jorvik Medical Practice if you're interested.

The headache clinic at York Hospital revolutionised the way I treat and manage my migraines.  It was there that I learnt about thresholds as oppose to triggers and there where I have received the much more expert advise on what treatments to try at what levels and what difference reactions meant for the next steps.  The specialist nurse there Jill Murphy is who I have seen on almost every visit and she is very good and as a sufferer herself she really understands.

Sadly, I'm less impressed with the neurologists themselves at the hospital though.  I'm sure they're very good and they know a lot, but I saw Dr Fontebasso there on my very first visit where she took a full history and discussed what I was experiencing a lot and she therefore diagnosed migraine.  I then have never seen her again.
The hospital frustratingly discharged me in the autumn (I shouldn't have let them but I'm very unassertive with people who are experts in things) so after I got re-referred I saw another neurologist on my first visit back; I don't even know what her name was.  Her appointments were running over half an hour late so my appointment which should have been thirty minutes long was only fifteen minutes long and I didn't get a chance to discuss anything I wanted to at all with her and I know now that I will be only allowed to see Jill, the specialist nurse, again with each visit.  As good as Jill is, I'd like to be able to speak to the neurologists as well.

I suppose that you could probably count the clinical psychologist I was referred to who I saw just over a year ago in the team as well, but as I only saw her twice and all she did for me was tell me to leave my job, which I did do, then I don't really include her in the team.
Equally, the nice chap who gave me a course of acupuncture at the hospital as well, it didn't help me at all so I don't really include him either.

The prompt also asks us about what essential roles still need to be filled.  This is actually a difficult one I think.  I really would appreciate being able to speak to a neurologist but since the hospital doesn't seem to think that's essential then is it? Am I just thinking I need to see one because I'm not doing?
I also think I would probably benefit from a specialist masseuse but I'm planning on asking Jill if she knows of anyone who specialises in massages to help migraines and headaches.
I daresay I would probably also so well to see a therapist too; stress plays a big part in the triggering of my migraines and like all migraine sufferers, especially chronic migraines sufferers, I'm more likely than others to suffer from depression and although I haven't felt that I'm depressed I've had a few friends say that there are signs that I am, so a therapist would probably help.  I can't afford therapy sessions so I haven't really explored that avenue when I would likely benefit from doing so.

Does anyone else have an essential migraine treatment team member that I don't even realise I'm lacking?

Sunday 9 June 2013

MHAM Day 9 - Mamma Mia

Today's prompt for the Migraine and Headache Awareness Month Blog Challenge is inspired from another Abba song, not Mamma Mia but instead Money, Money Money.




How migraine affects my finances isn't something I've talked about before and isn't something that generally gets discussed in this country; money matters seems to be something which is a cultural taboo although I break this taboo myself a lot as I find it a strange thing to not talk about when it impacts our lives so much.

My chronic migraines have had a fairly substantial impact on my finances.

By far the biggest part of that has been with regards to employment.  At the job I was in for a few years before my migraine condition started and was with until this time last year, I was earning a very good wage but the stress of the people I was working for and the role itself just made my migraines worse and worse.  When I parted company with that employer, I decided that I wouldn't be able to go into a similar level job at another company as my body just wouldn't allow me to deal with that stress anymore.  I therefore am now working for an employer, and most importantly, a manager who understands my condition and is on my side, which is worth the more than 50% pay cut I took compared to my old job for me to be happy working there and therefore getting far less migraines and far less days off work than at my old work.

As well as this very large cut in our household income, there are other financial impacts of having chronic migraine.

Although we have an excellent thing of the National Health Service in this country, we still have to pay a fixed amount per prescription and when you're getting a lot of prescriptions that can really add up at nearly £8 each.  Thankfully the NHS also offer a pre-payment card but that costs me £30 every 3 months still - a lot cheaper than paying for each prescription but still an amount not to be sniffed at.

The other major financial impact of my migraines is on food.  The episodic nature of migraines means they're impossible to plan for.  Each week I make a food plan for the week ahead and we do a supermarket shop.  When migraine strikes though, that food usually ends up being wasted, costing us money, and as my husband doesn't cook then we end up having fast food or takeaway food whilst I'm unable to cook, all of which isn't cheap!

Add onto that the cost of tickets or activities booked and paid for that I've then not been able to attend because of migraines and having to account for rest time holiday days off work whenever a journey or activity is planned for a weekend and it really had added up to an awful lot by now.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Photo by BabeWithABackpack on Flickr

MHAM Day 13 - Sophie's Choice

Today's prompt for the Migraine and Headache Awareness Month Blog Challenge is our very own Sophie's Choices.  If you haven't seen the film Sophie's Choice then I won't spoil it for you, but it is an excellent film which you really ought to see (if only to see how well Meryl Streep managed to speak Polish!).  Needless to say though, Sophie in the film, faced an impossible choice.


The Sophie's Choice which is being referred to is any treatment choices I've had to make when balancing migraine with other illnesses.

The only real challenges I've had in this respect are trying to exercise to help my migraines whilst exertion being a major threshold lowerer for me and treatment with regards to the vision in my right eye.  I have unexplained spots in the vision of my right eye which periodically get better and worse.  The only treatment I've had which has helped it has been prednisone which is a steroid and has some pretty bad side effects.  One of these side effects also turned out to be that it exacerbated my migraines, but then, when the spots are particularly bad (covering 50-75% of my vision in my right eye) then that also exacerbates my migraines anyway!

For me though, the real Sophie's Choice is about starting a family.
I got married last year and I'm approaching my mid-thirties now.  When people refer to the biological clock ticking, that's what I have now; from about the age of 35 onwards, the difficulty to become pregnant increases more and more and the potential risks and complications is increased month by month as well.

I really want to have a family and I think my husband and I would be good parents to raise happy, geeky children.  Ideally I'd like to have two of them.  We're even living in a house we bought with the plan of being able to raise children here.

The thing which is most standing in our way at the moment though, is my migraines.  Not only the fact that it would be extremely difficult to be an effective mother with the frequency of my migraines and how much rest I have to get to avoid them, but much more immediately than that.  In order to start trying for a family, I would have to come off my preventative medication.  If you think my migraines are bad now (and I know I certainly do) can you imagine how bad things would be if I was on none of my preventative medications at all?  With how things are at the moment, I can't see how I could manage to have a full-time job as I do now if I wasn't taking my preventative medications.

So at the moment, my Sophie's Choice really seems to be choosing to treat my migraines or choosing to start a family and so the choice I'm forced to make is to treat my migraines.  Things will have to change dramatically for that choice to be changed as well and it breaks my heart.  I'm trying to come to terms with the possibility that I might never be able to be a mother and it's a future I'm really struggling to contemplate.


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Picture drawn by John Hendrix

MHAM Day 12 - The Box: You are the experiment

Today's prompt is about times I've felt like a lab rat while I've been getting treated for my migraines.


Given I haven't really had much don to me then I haven't felt much like a lab rat to be honest.

The hardest thing when it comes to treating migraines is that everyone's migraines are different and everyone reacts differently to the different treatments there are for migraines.

There are eight different triptans available, which are the drugs which have been created to abort migraine attacks when they start.  Each migraineur reacts different to each of these triptans and it's a process of elimination to find one which works for you (though there are the unlucky ones who have tried them all and none of them work for them).
It isn't as simple as trying one with a migraine and if it doesn't abort it, move onto the next though.  You have to try each one for a decent period of time, for a good number of migraine attacks, to be able to gauge whether or not it's working for you.  And then when I found ones that worked better than the previous ones, but still didn't abort the migraines, I was reluctant to try other ones in case they were worse, I didn't want to suffer more pain than I absolutely had to, but the idea that one of them could actually abort the migraines was such a tantalising prospect I did of course keep trying different ones like a lab rat.

It feels similar with the preventatives as well but with the results of that being even less tangible than with the triptans, gauging whether a decline in migraines is due to a new preventative or an increased dose of a preventative or whether it's because I wasn't trying to do too much at the moment, if work isn't stressful at the moment, if I've been sleeping better, etc etc.  All the many things that contribute to my migraine frequency have to try to be seperated to try to gauge how effective a preventative treatment is being.  I take so many tablets a day and I am constantly assessing my reaction to everything every single day.  Sometimes I wish I was a lab rat and didn't have to try and self-diagnose my treatment all the time, that I could just think about the now and not about the whole, not about the migraines which just seems to consume so much of my thoughts and my life.


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Photo by globalhermit on Flickr

Saturday 8 June 2013

MHAM Day 11 - Twilight

Today's Migraine and Headache Awareness Month Blog Challenge prompt is a bit of a silly one but as anyone who knows me knows, I do like silliness!  The prompt is whether there are any vampire or werewolf powers I would like to have to help me cope with migraines and headaches.


There's an awful lot of powers in the Twilight books for vampires and werewolves so there's a lot there to choose from.  Spoiler warning, if you haven't read the books and/or seen the films and you want to and don't want to be spoilered, please stop reading now.

Well, as long as you're sure, please do carry on reading :)

The vampires in Twilight are all very fast, which I don't think would help me except when I need to get to a place of rest quickly. They're cold to the touch which means they won't feel the cold which would be nice as I feel the cold a lot but that wouldn't really help my migraines and headaches.  They avoid the sun as their skin sparkles in it; I avoid the sun as it can cause migraines for me but they're no more gifted at avoiding the sun than I am really so that wouldn't be much use either.  They're very strong which wouldn't really help me either and they never sleep but sleep is often my only respite from pain so I'd like to keep that please!  The vampires are all more beautiful versions of themselves too, which would be nice of course, but wouldn't help my migraines at all.  They have excellent hearing and vision as well which I think would be a hindrance rather than a help during a migraine so I'll pass on those too.

The werewolves are always warm, which as I said before I feel the cold, that would be nice too but it would just make me a little bit more comfortable whilst still being in agony.  They can obviously turn into wolves and if that would fix my migraines then I'd happily turn into one too. The group mind wouldn't work very well though as the rest of the pack would be hearing a constant moan or scream from me so I'll pass on that one thanks.

Edward's mindreading power wouldn't be much use except to perhaps know who was giving me genuine sympathy and who was secretly thinking "it's just a headache" but I think I'd rather not know that to be honest!

Bella's power is a little more interesting; her power is shielding and so I wonder if that would include shielding the brain from pain or whether that pain is coming from so much within myself that it couldn't be shielded from.

Alice's foresight power could well be useful though.  She sees the future based on decisions people make so maybe that would allow me to manage to take my medication at the right time or see if going to work when I'm not feeling good results in triggering or re-triggering a migraine or just to make sure I go home from work when migraine is coming rather than thinking I can last a bit longer and suffering for it later.

I wonder if Jane's ability to psychically project pain onto others could be used to transfer migraine pain.  If so then it'd be potentially be nice but I don't know anyone who I dislike so much that I would want to do that to them.

I'm sure there are others I haven't thought of too but it looks like there's a few powers which might be handy but on the whole I don't think I'd be particularly better off if I were a vampire or a werewolf, and that's not a sentence you hear people saying every day!


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

MHAM Day 8 - Little Shop of Horrors

Today's blog prompt relates to the famous line by Audrey II in The Little Shop of Horrors - "Feed me Seymour"

Specifically what food cravings I have when migraines hit.

I've heard quite a lot of other people who have chocolate/sugar cravings when migraine is approaching and this seems to be part of the body's reaction to the impending doom and can serve as an early warning sign.
I sadly don't have that craving.  In fact I'm pretty much off food altogether from before the migraine through to after it.  I don't have nausea with every migraine but with maybe 10-20% of them.

As much as I don't crave any foods though, there is one thing and one thing only that my body will tolerate me eating during a migraine, and that is a McDonalds Chicken Sandwich.


Don't judge me, I don't know why this is.  I have always loved McDonalds but other chicken burgers don't strike the same chord as the McDonalds one does and it really is the only thing I can face eating.
Luckily for my husband who is a self-confessed hopeless case when it comes to cooking (I still think there's hope there for him yet though) it's something he can provide for me when I'm down for the count and can't forage for food myself.

During the Autumn of last year, my husband was away in Norwich for a few months, working on our old house down there whilst working from the Norwich office.  This left me on my own in York which wasn't fun when I had the migraine attacks.  On one occasion when the meds hadn't worked to abort the migraine and I really couldn't manage to make any food in the kitchen, a kind friend delivered a McChicken Sandwich to my door.  I literally cried with happiness at this act and it actually felt like he was saving my life.

Does anyone else have any strange migraine cravings?

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com


Friday 7 June 2013

MHAM Day 7 - Pretty Woman

Today's prompt for the Migraine and Headache Awareness Month Blog Challenge is about what I do to look good when I feel crap.

Well for me, it's mostly in one word, shoes.



For some people they might do their hair in an awesome way, others might glam up their look with make-up.  I'm useless at both those things but boy oh boy do I love shoes!

The shoe shown above is one from my collection which I particularly love.  I'm a particular fan of Irregular Choice brand shoes (like the one above) as anyone who has seen my shoes will know.
When I get ready for work in the morning, I choose the shoes first then pick the outfit that'll go with them.  If I'm wearing fabulous shoes, I might not feel fabulous because of the pain, but I feel like I look a lot more fabulous.

I do things to try to make myself feel better even if I feel bad because of pain, and Pinkie Pie is my shining star there.  I have a model of her on my monitor at work, a trading card of her stuck to my work monitor and a big poster of her on my kitchen door, all to make me smile when I'm feeling down because of the pain.




When I'm in full migraine I don't look good at all of course, then I'mm in my jammies with my matted hair feeling like crawling into a hole in the ground would be the ideal thing.  I never do anything to make myself look good at those times but since it's only my long-suffering husband who sees me then I don't mind ;)


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Thursday 6 June 2013

MHAM Day 6 - Premonition

Today's prompt is about looking at the future of migraine treatment.
This is a little harder to talk about as I don't sadly have a crystal ball (or Trelawney to tutor me) or a handy time machine (though if The Doctor is reading, perhaps he could take me for a spin?)




Instead I can only look at what I have seen in the time I've been following migraine research (which to my failing hasn't been for long) and try to see where it's going.

Firstly though, let me preface by saying that migraine treatment is very under-funded compared to other chronic medical conditions.  It is more prevalent than diabetes, epilepsy and asthma combined affecting more then 8 million people in the UK alone and yet receives very little funding for the number of people affected.
Consequently, the medicinal treatments that we have available to us as migraine sufferers are almost entirely drugs which were created to treat other ailments which they found help migraineurs; triptans are the exception to this which are used to treat a migraine attack but it isn't fully understood still why they are so effective for an attack as what causes and happens during a migraine isn't fully understood yet.
I, for example, take on a daily basis propranalol (beta-blockers, which lower blood pressure, primarily for heart attack patients), amitriptyline (an anti-depressant) and the contraceptive pill (which I tricycle to level out my hormones to prevent migraines at menstruation & ovulation).  None of these were developed to prevent migraines.

The latest treatment which is now becoming available more widespread is botox.  I don't know if botox was originally developed for the cosmetic industry but that's what it's used for most.  Sadly this treatment doesn't last for all that long though and regular re-treatments are needed to maintain it's effect.

The fact that things like botox are being found to help migraines is good though, and the information that these things help prevent migraine all furthers the understanding of what migraine is.

I hope that within my lifetime, research has progressed to the point where migraine attacks can be completely or almost completely prevented.  In the more short-term future though, I think that more break-throughs are going to happen and in the next 10-15 years I expect that more things will have been found to help treat and prevent migraines and I'll be able to live more of my life.

Not much in the way of predictions I know, but since I don't work in migraine research and I know little about it other than what gets reported in the news and what I find through my daily migraine reading then I've little information to go on I'm afraid.

The biggest thing I have to keep me going through the bad days though, is hope, and I hope for a much brighter future when I and others won't have to suffer so much.


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Wednesday 5 June 2013

MHAM Day 5 - Carousel

Today's prompt is the most famous song from Carousel - You'll Never Walk Alone.  That's not to say this is a day to talk about Liverpool F.C. (perhaps to my Mum's disappointment), but rather I feel it is about those I have found who share my illness.



I didn't realise that I had a big hole in my support network for my migraines until it was filled.  I have an extremely supportive husband and very understanding and supportive friends.  I have a good GP since I moved to York two years ago and I've been seeing a migraine and headache specialist clinic at the hospital here for 18 months.

One day though, when I was on twitter, I stumbled across a lady called Victoria with the twitter name of @migrainemonolog.  From there I followed through to her blog, Migraine Monologues.
Wow, I was in tears almost immediately when I looked at her blog.  I had started with her still very new Migraineur of the Month section and so I was reading a few posts from a few different people talking about their migraine experiences.  It was so powerful, it was like someone just took the lid off the box I hadn't realised I was trapped inside.

Victoria quickly introduced me to some other fellow sufferers on twitter, most of whom also have blogs although not exclusively about migraines.  It was incredible, I really can't explain how amazing it was then to talk to other people who suffer day in, day out, with the same ailment as I do.

I chat to this bunch of fabulous ladies on twitter every day; we talk about the meds we're trying, things which work for us, things which don't, how we're feeling today, what we're doing at the moment, etc etc.  Just talking to people who understand so completely about the things I go through every day and who can truly emphasise when the migraines hit is so much more powerful that I believed possible.

Victoria also started a Migraine Book Club, and we will be discussing the second book on Monday and I'm so excited to chat about a migraine book with fellow migraine sufferers.  It was fantastic when we talked about the last one and I just can't wait even to have a group of us in a chat room together again.
The hole I didn't realise was there has been filled well and truly as it was because of these ladies that I now have my own migraine blog; that's something that I never would have considered before I met them but so I'm happy that I now have it as it's such a good medium for me to help understanding by those around me and for other sufferers to know that they're not alone either.


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Tuesday 4 June 2013

MHAM Day 4 - Finding Nemo

Today's prompt for the Migraine and Headache Awareness Month Blog Challenge isn't about swimming oceans to find a small-finned fish but is about just keeping on swimming like Dory in Finding Nemo.



I've had quite a few people, when they've seen my migraine diary and what a constant battle  face with migraines and headaches, say that they don't know how I cope with it.
If someone had handed me my migraine diary as it is now a few years ago and told me this is how my life was going to be, I doubt I would have believed them but if I had then I think I'd have hidden away in a corner of a dark hole and begged for it not to happen.

As it is, my life has crept slowly towards where it is now, with some better periods and some worse ones.
I find it incredibly frustrating that any plans I make I have to disclaimer with "all plans subject to short-notice cancellation due to migraines" but I'm kind of used to it now.  In some cases it's annoying but not disastrous like not making it to the cinema and having to wait till a film is released on DVD instead but in others it's extremely irritating like when I'm on holiday or at a specific event and have to miss it completely.

I can't, and won't, just stop living life though.  I make my plans now with migraines in mind, booking days off work either side of big events, not making plans on consecutive weekends where possible or consecutive evenings and ensuring that plans can be easily cancelled if I'm not feeling up to them even if I'm not being hit by a migraine at the time.

How do I just keep swimming? By wanting to enjoy my life as much as I can.  My life isn't over with migraine, it's just not as good as it could be and I'll carry on living as much of life as I can and keeping on hoping that things will get better.


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Photo from Finding Nemo, copyright Disney.

Monday 3 June 2013

MHAM Day 3 - The Hunger Games

You'd be forgiven for thinking this post is going to be either about food or about putting 24 migraine sufferers in an arena and watching them try to kill each other when they're not hiding in dark caves screaming in pain.
It's actually to do with the classic phrase used by Effie Trinket in The Hunger Games of "May the odds be ever in your favour." In other words, how do I better my odds against the dreaded migraines.




I've actually already written about My Everyday Life with Migraines which talks about the things I do every day to try to keep my thresholds high and the migraines at bay.

Sometimes though, I have to do things which I know is almost guaranteed to trigger a migraine and there's little I can do about that but I do make sure I'm prepared for it and treat the migraine at the earliest possible point to try and abort it from the start and allow me to carry on.  That worked well recently at the UK Games Expo but not quite as well on my anniversary weekend where the migraine came on overnight so by the time the pain woke me it was a bit too far gone for my treatment to completely abort it.

I'm always willing to try new things that will help to ward off the migraines and I thankfully have understanding friends who don't take it personally when I can't come and see them, cancel at the last minute or have to leave early.  Often these acts are more about bettering my odds than because of an actual attack at the time - not doing the activity that I know will lead to a migraine.

Bettering my odds of not having migraines can have the opposite problem sometimes as well of course, when it's so stressful trying to do, or not do, all the things to prevent a migraine happening that the stress causes a migraine!

I doubt there's any chronic migraine sufferer who doesn't dedicate a lot of their time and energy to bettering their odds and I daresay the things that I do will change over the lifetime of my migraines, but for now the things I do to better my odds are already covered in this blog and I continue to do them, every single day.


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com


Sunday 2 June 2013

MHAM Day 2 - X-Men: Migraine & Headache Disorders Super Heroes

Today's prompt for the Migraine and Headache Awareness Month Blog Challenge is about the superheroes in our lives.


Well I'm sure I've mentioned more than a couple of times in this blog, just how incredible my husband is.

It's no easy thing to be the partner of someone with a chronic illness and I think even more so a chronic episodic illness.
When we first met, I didn't have migraines. When we fell in love, neither of us knew that the future was going to hold such a life-changing thing for us. I wouldn't have blamed him at all if he'd decided that the migraines were just more than he could deal with and he wanted to bail out now.

He hasn't done that though.  Instead he's supported me to the best of his ability, he's changed everything about our lives to best benefit me and my health and he's learnt everything he can about my condition to try to help in the best way he can.

Not only does he try to do everything he can for me when I have the migraines themselves, he fully understands migraine prevention measures and orders me to rest when I feel guilty I'm not helping with things.  He is often better at helping to prevent migraines than I am, not least by often recognising that I'm getting a migraine when I haven't realised it yet myself!  This means I take my medication in time on those occasions and manage to stop the migraine in its tracks, a huge difference!

I'd like him to write a post on this blog at some point himself to explain what it's like to be married to someone with a chronic episodic illness.  As frustrating as it is for me to have to cancel plans at the last minute, I can't help but think it must be even more frustrating for him as he doesn't get to do the fun things that are planned and instead has to look after me and watch me suffer in pain which I know breaks his heart and must make him feel helpless.

Today is our first wedding anniversary and this time last year I know we were both just so relieved that I didn't suffer a migraine on the day of the wedding which was both of our biggest fear for the day.  We were hoping to be trying for kids by this point but my health still being so bad has meant we've had to postpone those plans and I worry we'll never be able to have them and that will be something else I've taken from him.

He is my superhero who makes my life happy and worthwhile between the migraines and makes the migraines themselves more bearable and I thank the gods every day that I've been so lucky to have found him.



June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Photo is the cover of the new X-Men #1 comic which is out now, features all-female x-men and is great, go and buy it!

Saturday 1 June 2013

MHAM Day 1 - Phantom of the Opera

So it's Migraine and Headache Awareness Month (MHAW), or it is in the US at least, and I've decided to participate as much as I can in the MHAW Blog Challenge.
Each day I'll be given a prompt for a blog post and today's is about masks.


I've talked about this a bit before when I discussed The Brave Face in a previous post.  I do wear a mask a lot of the time.  I want to be treated normally when I'm not suffering from a migraine or a migraine hangover at the time. i.e. I want to be treated normally when I feel normal or mostly normal.

The problem is that when I don't feel normal so to speak, when I'm feeling delicate either because a migraine is coming, I've just recovered from one and am suffering the postdrome effect (migraine hangover) or I've managed to medicate one and I'm trying hard not to re-trigger it, at those times I instinctively put a mask on, I try to act as normally as possible.

This is usually to my detriment as being treated normally in these circumstances usually ends up punishing me with a lot more pain and possibly triggering or re-triggering a full blown migraine; heavy punishment indeed for just wanting to be treated like everyone else.

I know my long-suffering husband puts up with a lot from me as well, my illness effects him almost as much as it does me, so to save him heartache and strictly against his orders to me, I often find myself wearing a mask to him as well, just so I don't have to see his spirit crushed when I tell him I'm in pain yet again.

I've realised recently just how counter-productive these masks are and I'm really trying to make an effort to keep those around me informed as to my current state but it does just feel like I'm complaining all the time!  My will to wear a mask is strongest with my colleagues as I want to be able to put forward the professional me at work, but they've seen me starting with a migraine a number of times now and even saw one in full force to my dismay recently too so I'm trying to be open with them as we'll but it feels even more like I'm just complaining all the time with them than with my friends and family!

I think everyone with an invisible illness will probably wear a mask to some extent, sometimes I feel lucky that I'm able to do that but then when I end up getting punished for it then I end up wishing I didn't have that option after all.

Hopefully one day I won't feel the need for masks at all as my migraines will be so infrequent.  That's the hope that keeps me going on the bad days.


June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Photo by Stephantom53