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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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 www.the-leaky-cauldron.org). 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.

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.

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.

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!!