Tuesday, 27 August 2013

Coming Soon - Migraine Awareness Week!

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

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

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

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

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

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

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Sunday, 11 August 2013

Invisible Illness Problems at LeakyCon

I've just spent the last 4 days having a fantastic time at a Harry Potter conference called LeakyCon (so named because it is run by staff from 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.

Saturday, 3 August 2013

Small Milestones

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

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

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

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

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

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

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

Thursday, 1 August 2013

Month in Review - July 2013

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

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

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

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

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

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

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

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

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