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.

Why me?

It's on the most painful days, or sometimes just on the days when I can't remember what it's like to not be in pain, that I ask "why me?"

I'm not a spiritual person, I don't believe in any gods, but with the persistent and completely agonising pain of chronic migraine and with the every day constant of daily headache, I wonder sometimes if I'm being punished by some higher power.

I understand most pain, it might hurt unbearably, but it's your body's way of telling you that your arm is sliced open, you're holding something that's burning you, that you've got some problem on the inside which needs to be resolved; it's the body's way of telling you that something is wrong and it needs to be fixed.

Why then, do I have this excruciating pain in my head? It's not a sign of a brain tumour or anything like that, it's not a sign of something being wrong that needs fixing. So it just feels like it's punishment.

Punishment for trying to enjoy life, for seeing my friends, for doing my job.  Punishment for eating, punishment for not eating, punishment for being warm, punishment for being cold. Punishment for doing exercise, punishment for not doing exercise, etc.

I've tried to be good to people in my life, to treat others how I want to be treated myself.  I haven't always managed to do that though and I know I've been terrible at keeping up friendships and being there for friends, maybe that's what I'm being punished for.

If it isn't a punishment though, why me? Why do I have to endure this never-ending and seemingly pointless torture? There are worse people than me in the world who don't go through this pain, why do I have to?  Are they punished in some other way I don't know about?

Of course, no-one knows why me, they don't know what causes migraines yet. Maybe when they do find out, they'll be able to find a cure and there won't be masses of sufferers wondering what they did in a prior life to deserve this punishment now.

Month in Review - June 2013

So June is over already and this is how June 2013 was for me.

As you can see, it's been a painful month!

The start of the month (the 2nd) was my one year wedding anniversary and to celebrate me and my long-suffering husband took a trip to the lake district from Fri 31st May to Sun 2nd June.  With travel being a trigger and a day trip to Bletchley and back the day before, migraine striking was inevitable and it arrived right on cue.
The  migraine arriving during the night in the early hours of the 1st with the pain waking me at about 4am.  The meds worked but they took what felt like forever but was actually an hour or so.  I was ok during the day when we tried to do the things we had planned but we didn't manage to do them all as I was feeling the fatigue of the migraine despite not having the pain.  The migraine then returned overnight, waking me again with pain at about 4:30am.  I then spent the day at about a 4-5 on the pain scale meaning we managed to go to one of the things I had planned but otherwise came straight back home.  Luckily I'd had the foresight to book the following day off work though when I took some time to rest and recuperate to make sure I was back at work the next day, which I was.

I then was able to celebrate two days in a row of being pain-free on the 6th and 7th but sadly this was the calm before the storm.  The weather suddenly heated up on Saturday the 8th and despite staying inside, this seemed to be my downfall as this triggered a migraine which turned out to be a very long migraine which I occasionally, but thankfully unusually, get.  My meds had seemed to work on the 8th but it started to come back during the day on the 9th and it didn't go away all week meaning that I wasn't able to go to work that entire week which was incredibly frustrating, especially as every day I expected that I would be back to 'normal' the following day and able to be at work.

I was meant to be going down to Kent with my husband that weekend but sadly I had to send him off on his own to see family and stay at home resting instead.  On that Saturday, the 15th, it then lessened over the course of the day ending up as a level 2 headache which was wonderful after the pain of the week.  Sadly this seemed to just be the migraine gathering some force before coming back with a vengeance then as it arrived and strong and angrily as it normally does on the Sunday.  I medicated it but once again it didn't take all of the pain away and so the attempt to abort it had failed and I had to ride it out again.

Unfortunately, this meant that I had had more than a week off work with one hugely long migraine so, whilst suffering the migraine, I had to go to my GP to get a doctor's note for my work and I was no longer allowed to self-certify after 5 days.  That trip made me worse and then I was made worse still when I had to attend the hospital for an appointment for my eye problem, which meant two hours there undergoing various tests and having my pupils dilated which was really horrific with a migraine.  It was therefore unsurprising that I wasn't able to go to work the day after making it a huge 7 working days in a row that I had to miss work and that means I've triggered the HR conditions for the number of short-term absences in a year (triggered after less than half a year).

I then got through the next 3 days at work with daily headache at low level for me but a pounding headache to non-migraineurs.  I managed to make it to the evening portion of a friend's hen do in the evening of that Saturday, the 22nd, but despite being on the J2O instead of the wine like everyone else, I paid for it the next day with another migraine; this time it was one of the right-hand side of my head which is usual for me as I usually get them on my left side.  I'd like to see if there are any patterns to my right-sided migraines so I've started tracking which side of the head they are on from this point.

That migraine was pressing in for the next couple of days but I held it off, despite being at work which was good. That Friday, the 28th, was then my birthday!  I had the day booked off work and I was really excited getting some fabulous presents from my nearest and dearest and my head even gave me a wonderful birthday present of a pain-free day!  I was so happy! I was so excited!  I was going to be punished!

Despite my husband repeatedly telling me to stop being excited (which is really annoying when you're excited but he's exactly right, which of course makes it more annoying! lol) I was excited, and I was a little too excited it seems.  With friends coming to stay for a small birthday party on the Saturday I was expecting the excitement of that party to punish me on the Sunday with a migraine but instead, the excitement of my birthday on the Friday punished me on the Saturday with a migraine, whilst everyone was at my house for a party for me!

So instead of being a social butterfly and chatting to all my friends, I was hiding away with one or two people so that it wasn't too overwhelming and I had The Brave Face plastered on me at all times.  I had to medicate a second time because the inability to rest and sleep after taking my first lot of meds meant it wasn't effective at aborting it but the second dose always makes me really spacey and I can't even remember some of that evening (like the kind of memory blanks you can have after getting very drunk).  The following day I limped along until everyone had left and collapsed in a heap of pain and it really felt like migraine had ruined my birthday this year.

So the month started with hope as the end of May was pretty good and I thought maybe it was my new preventative, Amitriptyline, helping me now, but I'm not sure it's doing anything at all for me after this month of pain.  I'm giving it 3 months to work though so there's a bit of time left yet for it to prove itself.  I really hope July will be coloured in much lighter colours that June was!!

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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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. 

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

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?