Tuesday, 30 July 2013

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.

Monday, 8 July 2013

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.

Monday, 1 July 2013

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!!