Month in Review - May 2013

Another month and another batch of migraines and a lot of headaches but things are starting to look up.

So this month might look bad, and I must admit it felt pretty bad too, but compared to April things are starting to look up.

The Neverending Headache continued as May started and sadly that'd a trend that carried on through the whole month.

I took things as easy as I could on the bank holiday weekend at the start of the month, though on the Saturday it was Free Comic Book Day so a trip to the local comic & games shop was in order and I managed to make it the short drive over to Leeds to see a friend for his birthday but I could feel the headache building though so we had to leave a bit earlier than I would have liked but I managed to keep it at bay at least.

I felt good the next day though I was sleep by 9pm so on the bank holiday Monday I tried to do a bit more and worked with Chris on clearing out the old boxes from the garage to make room for the things we stll have boxed up in the house.  I took loads of breaks, kept well hydrated and thought I was being sensible but it seemed not as I was punished with a migraine the next day, and another day of work missed.  This was was particularly frustrating as I could feel it was starting before I went to bed.  I woke up in the night between my deep sleep cycles and I knew then that it was a bit too early for the meds but I knew by the time I woke after my next deep sleep cycle that it would be too late for them so I took them then and so they didn't do their job fully and although I was mostly ok when I was perfectly still, looking at any light or moving my head at all was like a knife in my eye so work really was out of the question.

That then turned into a nightmare week all in all.  I was back at work the next day but I'd gone in while the migraine was still lurking and it turned into a new full migraine by 4pm.  I had to double dose that evening but it shifted by the time I managed to sleep.  I then forced myself to go to work again the next day and was really badly punished for it, ending up curled up in the corner of a dark office crying while waiting for a kind friend to pick me up and take me home.  This meant at least one of my colleagues saw me in full migraine and that wasn't something I wanted people at work to ever see, I felt embarrassed and naked in some respect and I hope I never repeat it!

I was understandably not at work the following day then (10th) but I also had an appointment at the hospital where I'd managed to bag a cancellation appointment with the neurologist to bring the appointment forward by over a month.  I made it there but left very dismayed as I got hardly any time with them as they were running so far behind schedule.  I left with the big result I wanted though, I was to start on a new preventative of Amitriplyline which I could use in combination with the beta blocker preventative I was already on.  I went straight to my GPs that afternoon to get the prescription as well so that I could start on it straight away.

This is where I see a massive difference in the chart above though it may not be obvious to others.  From the 10th May when I started taking the preventative, things have been slowly but surely improving.  Although a migraine started at the end of the working day on the 14th and I was forced to miss work on the 15th with it (I tried to go and had to turn around within 2 mins from my house it was so bad) things haven't been as bad since.

I had a low key Eurovision party (party of 4) round my house on Sat 18th but despite doing everything right, I was so excited about Eurovision that I suffered The Migraine Punishment for it anyway.  The meds worked though and I was back at work the next day also it re-triggered by the evening because I worked through it but I didn't miss any work and that was the major thing for me.

The next two days I then finally had a respite, two whole clear days of no pain, it was amazing.  It felt so incredible to have that time without pain but I had to be careful not to get too excited by it or I'd just give myself more pain!!

The big test for me then was UK Games Expo weekend.  A whole weekend of migraine triggering fun!  The drive down to Birmingham was the first threshold-lowerer and I escaped that unscathed (other than the constant low-level headache of course).  The next day was fun and frolics and two games of Dungeons & Dragons, one of which wasn't scheduled to finish until midnight - after my usual time to sleep and I had to time my amitriplyline for later (as it knocks me out) and I still survived it!  The Saturday (25th) was the most full-on day of the Expo and I was suffering by about 5pm so we headed off and with some meds and an early night I was still going next day, although the pain was such that I couldn't enjoy it quite as much.  I managed to play in the Dungeons and Dragons game I was most looking forward to, though not on full form, but I made it through, enjoyed it all, and the migraine hit in the car on the way back.  My meds did the job and I spent the next day resting (a day we had booked off work as we knew I'd need a recovery day!) and I was back in work as planned the next day, incredible!  I don't think I would have made it through this full-on weekend that well before I started on the amitriplyline.  Well, I'm hoping it was because of the amitrip as to why I survived it so well because that's a lot of hope for the future if it was.

Yesterday we did a big drive of there and back to Milton Keynes in one day to visit a friend in hospital (and yell SURPRISE! on the ward as she didn't know we were coming!) and I made it through with just a level 4 headache by the drive back!  I also upped my amitrip dose yesterday so hopefully I'll just see more and more improvement from here out!

It's my first anniversary weekend this weekend and we're off to Cumbria for lots of castles and a hotel by the sea.  Here's hoping my migraines give me the weekend off and let me celebrate without the pain :)

A Day of Celebration

I'm thrilled to be celebrating two pain-free days on the trot today (I'm not counting the occasional pangs of pain I had on both days)!

I've spent the last two days actually feeling like myself - I've had a lot more energy, I've been generally a lot happier and even my colleagues have said they can tell from looking at me that I look different for being pain free.  It's like a giant heavy load has lifted from me, the black cloud from over my head has finally floated on by.

Before these two days, my last pain-free day had been over a month ago on 16th April and my last two consecutive pain-free days had been 7 weeks ago on 3rd & 4th April.

Having these pain-free days feels amazing, I had forgotten what it felt like to feel like me, I had forgotten that how I was feeling wasn't how 'feeling like me' feels, if that makes any sense.  Daily pain had become such a norm that it seems that I had forgotten that wasn't how things are meant to be.

I feel elated at having these two consecutive pain-free days, but I can't help but feel a pang of sadness too that this is such an amazing achievement for me.  The fact that pain has become such a huge part of my everyday life that I celebrate hugely for being pain-free for a couple of days takes the edge off the celebration a little.

I'm hoping that this because of the amitriptyline I am now taking and that it represents a corner turned.  I'm hoping that instead of feeling thrilled at having the occasional pain-free day, that pain-free will be my new norm.  I'm hoping for my quality of life to improve so that I feel like me the majority of the time instead of such a small amount of the time.  I'm hoping I get to spend quality time with my husband again instead of forcing myself to play games together through the pain and suffering for it afterwards. I'm hoping for a brighter tomorrow.

The Migraine Punishment

Today I have suffered the wrath of The Migraine Punishment.

This is what happens when I follow all the rules of my lifestyle management but because I got excited about something and really enjoyed it, I get punished with a migraine.

Yesterday was Eurovision day.  I love Eurovision, I have done for as long as I can remember.  I've only missed it once in my living memory and that was when I was working whilst at university.
This year I went all out and watched (and marked of course) both of the semi-finals during the week as well which built up the event much more and was fantastic fun at the time.

Normally I go to a big Eurovision party but with my health lately I decided it would be wise to instead just have a couple of friends round to our house, some snacks, scorecards and of course, Eurovision bingo!

I took it easy during the day, though I did do some tidying of the front room before my friends arrived.  I had nothing planned for the following day, it was all as low key as I could possibly make it.

But I was as excited as Pinkie Pie on a party day, especially with the very exciting Doctor Who series finale being on just beforehand as well.  Did I mention I was excited? I was really excited!  I was so excited throughout the whole event, Twitter actually started blocking my tweets for a while as I'd tweeted so much in a short period of time. I was EXCITED!

And being that excited, enjoying something that much, results in The Migraine Punishment.
I woke up this morning feeling very hungover - I hadn't touched a drop of alcohol the night before (I extremely rarely do) and so I knew this was a bad sign.  I rested up, drank plenty and went into full migraine prevention mode.  That didn't stop it though and it reached the treatment window by 6pm (yes that is therefore the whole day of feeling awful and the pain just gradually getting worse and worse before I can actually treat it).  My meds seem to have worked so my big hope now is that they've fully aborted it and I'm fit for work tomorrow but I am just so bummed by The Migraine Punishment.

The more I'm excited about something, the more I enjoy it at the time, the bigger the punishment the following day and I can't just stop enjoying the things I enjoy for the fear of that punishment, I can't put my life on hold because of The Migraine Punishment.

The Brave Face

It might be a cultural English thing, it might be a Daisy thing, it might be a Hufflepuff thing, it might be a combination of them or none of them, but The Brave Face is something I instinctively do and I often wish I had more control over it.

What I mean by The Brave Face is firstly when I'm feeling dreadful and I'm with people I will instinctively try to act as though I'm feeling much better than I actually am and secondly when I'm talking about my migraines I tend to laugh about it, make jokes and generally downplay it all.  I believe I do these things to put people at their ease.

This is one of the most frustrating things that I do and I just don't seem to have any control over it.  I'm ruled by this condition, my life feels like it's on hold, yet I'll laugh and make jokes about it when asked about it and I'll act like I'm fine when I can feel the pain building inside me or when I'm battling with a medicated but still present migraine.

I worry that people think I'm actually making a big thing out of nothing when I do this, as from their perspective surely if it was that serious then I wouldn't be laughing about it.  And equally when I have to slink off home early, then I think the people I was just with will be thinking the classic "well she didn't look sick!" and think I've just got a headache and I'm making a fuss over nothing.

In actual fact, when I'm in pain, be it a daily headache, pain building to a migraine or a medicated but still present migraine, I just want to hide away from everyone and everything which is something that my husband has to battle against nearly every day to get to spend any time at all with me (he's the one person who I usually manage not to Brave Face with but even with him my instinct to Brave Face often takes over).  Spending time with anyone is against what my body is telling me it wants so trying to act normal on top of that is actually a great deal of effort and really tires me out.  I'm trying really hard not to do this anymore but especially at work I can't help but try and act normal.

When I'm talking about my migraines, I know it's not a nice thing for people to hear about, and given there isn't a cure it's also one of those 'no hope' types of conversations, so I instinctively want to please the person I'm talking to, I instinctively want them to enjoy the conversation, even though I know they shouldn't.  I also know though, that when I'm laughing and when I'm making the jokes and when I'm trying to make light of it all, I know that if I wasn't doing that, the alternative is that I start crying as I talk about it and no-one wants that (not least because crying lowers my migraine threshold!)

I wish I had more control to be able to choose when to put my Brave Face on and when to just be able to be honest with the people I'm with or the person I'm talking to about how I'm feeling.


Photo credits: Laughing cat by *!~Freddie Freak~!* and Grumpy Cat by Bryan Bundesen