Sunday, 4 September 2011

Can you put a price on pain? Migraine Awareness Week

Today heralds the start of Migraine Awareness Week, which then runs till Saturday 10th September. This is a very personal and important topic to me, especially because of this year's theme "Can you put a price on pain?"
I have suffered from debilitating migraines since I was 9 years old. My father suffered from them in his childhood too so I guess I had the genetic potential, but for me migraine first flared up in a time of stress. I was being bullied at school and my body's way of reacting was to show the stress through my health.
This culminated in the autumn term of Year 5 at school where I had a month off before Christmas. Around this time I was diagnosed and so started back at school in the new year with preventative medication plus medication to take during an attack. You could probably say I'd been suffering with a form or stomach migraine for a couple of years previous, as I kept telling my mum I felt nauseous but there wasn't an obvious reason for it. Most likely I'd been eating things I now know to avoid because of my migraines.
These new attacks were almost daily but fresh each time- I woke up not feeling so bad but at school I would soon feel wretched. I told my parents about the bullying that summer but sadly the school made a complete mess of sorting it out and so it continued.
One year later and I was literally too ill to stick out a whole day in school. The school got completely fed up of this and became less inclined to be helpful and call my mum to pick me up. By February my GP, who is a wonderful lady, decided that in an attempt to get me better I should be pulled out altogether. My day's were spent trying to get me to relax mixed in with art work and workbooks.
That September I took the plunge to start high school. I was extremely nervous about it, but very determined. At this point I was still suffering with migraines but not as a daily occurrence. However, most of the people from my primary school had continued to the local high school. The school year was huge so I didn't have to see the worst offender but soon I found bullying started up again and so did the migraines. By Year 9 my life was a daily living hell. It became clear that if I was going to get any qualifications I needed to move. My parents looked into other options and kindly sent me to the local private school.
I started the school for the last half term of Year 9 and immediately felt so more at ease there. By the start of Year 11 I was much happier and healthier. I was still getting migraines badly for a few days every month but I was on top of my workload.
Then the worst happened. I shall not call it an accident for it was not, so therefore it shall be referred to as an incident. In this incident in November 2007 I suffered a head injury. This injury resulted in whiplash and my migraine spiralling out of control.
Since I started this blog there has literally not been one moment where I have not been in pain.
There was one rather lovely day a little while before my blogging antics began, funnily enough on an exam day. I somehow got through my GCSEs despite missing half the year due to the work done before my injury and how excellent my memory was. I started A Levels full time and taking four subjects: English Literature, Art, History and Philosophy and Ethics. I really loved all these subjects, I was an essay writing fiend, however after a few weeks English Lit had to go. In the spring I started out a new course of medication and this was a complete disaster.
My memory went, I started completely loosing my eyesight. I am still recovering from the effects and my stomach is so fragile I cannot stomach basic painkillers like I could before. My lot is now to have a couple of paracetamol only when things are at their very worst. The art exam is really early in the year at the school I was at and it became obvious I couldn't do it. I dropped out completely but continued my weekly half hour LAMDA lesson (like a musical instrument lesson but with acting) and took my exam in that, if a little later than the other students. Going up to Manchester on that day I could actually forget my pain for a few hours- bliss.
In the September I started at college which allowed me to go in just for my lessons and I took up Fine Art and Fashion and Textiles, two subjects I enjoy but have far less writing! One of the odd things that happened after the medication fiasco was that I completely forgot my handwriting! How weird is that?
There've been stories in the news about people who change accent when they have a migraine. With me my diction is really hard to keep up. At my best I sound like I've had elocution lessons, at other times my own mother can barely tell what I'm saying.


Can you put a price on pain?
Well the price is more than just on pain. There's the dizziness, the (lack of) concentration and eyesight, the nausea, the nightmare of travel, my inability to cross roads safely (though I am getting better at that over time, there have been some very near misses). There are people who literally become partially paralysed when they are struck with a migraine. I cannot live a normal person's life with my body and yes I do consider myself disabled. Things are not so easy for me as an able-bodied person. How am I meant to attempt a full time education or full time job?
Last summer I saw an article that made me overjoyed. It was on the new use of Botox for migraine. I know mine is to do with the muscles in my neck to do with the injury, even the muscles on my face are often tight, uncomfortable and very, very painful. It seemed the perfect thing for me! My GP and I have literally come to the end of the line so far as normal medication goes.
So in I go with my article printed out and feeling hope for the first time in years. But wait, there's a problem and it comes from the cuts being made by the Government. Long standing chronic conditions which are not immediately life threatening in themselves are being tragically neglected. It is not that the treatment has been wiped off the NHS altogether but local Primary Care Trusts are being left to decide what to do with their limited funding. My area got hit, and it seems far more did than didn't.
I've been left trying to find out where to go private. Yes it is very expensive. And we don't even know where to go! It's not just finding someone who does the Botox treatment, it's finding someone who is practised at knowing how to use it not just to get rid of crows feet but migraine too.
This all leaves me feeling lost and still suffering from constant pain. When I started this blog the most I could do was sit up in bed with my laptop, and I'm so grateful to have come on from this. I'm also very lucky to have amazing parents and a wonderful best friend, who I found since leaving school. Last year I also went on a pain management course which was excellent and taught me some really good techniques for coping and organising myself.
I was determined to start high school and I'm determined to this day. I like blogging and the routine it provides, and I grew a lot from my time being a debutante in the London Season- those trips to London were huge steps for me. My life is enriched by interesting trips and wearing clothes that I enjoy. True I take a while to recover after each day out, but they are definitely worth it. Some days are worse than others, or even months at a time like early this year, but I've never given up completely. I'm a perfectionist so it hurts that I'm now not the perfect academic student. However, I'm going to be the best blogger I can and I may not be going the usual route, but I am jolly well going to sell my paintings and have the best life I can.

16 comments:

Unknown said...

I've also suffered from migraines since I was 7, I'm 16 now and they've been a total pain since. My primary school we're also reluctant to do much about me getting ill, and now I'm in my second last year of high school my friends often seem to think I'm "crying wolf", which really hurts me because they just have no idea how ill I feel with them.
When I was 11 I was in a car accident and suffered from slight whiplash, a few weeks afterwards I ended up with a constant headache for over a week and just felt absolutely terrible.
I've found mine definitely flare up with stress, I sat my first set of exams at the beginning of this year and I had migraines most days.
This was a great post to see xxx

Leia said...

Dearest Florrie, I'm so so sorry to hear about all your health problems :( but I have to say that you're incredibly brave and determined to live a normal, happy life! And you don't moan or complain, you're so positive, and that's wonderful. It's great to raise awareness -- my mum has suffered from migraines so I know how debilitating they can be. *hugs*

Leia

Chloe said...

Hugely inspirational and a credit to you and your determination to be the best you can be, whatever you're faced with.

I never appreciated how much a blessing a pain/illness free life is, until I got injured and then ill.

A massive reminder that you can't put a price a pain free life and tht however bad things are, there are people like yourself to remind us that it's possible to go far, regardless.

Pearl Westwood said...

My beautiful brave FLorrie, I am so proud of your am honored to call you a friend. You had me in tears reading this on the tram this morning but now you have me in hysterics at that awful photo of me LOL what a face! When we first me I knew we had a lot in common with blogging but I never thought I would be lucky enough to find a friend who understood what it was like to live every day in constant pain. It is hard for a lot of people to comprehend just how hard it is, so to have someone understand what you are talking about when you get a 'brain fog' or not give you strange looks when you have to analyses every ingredient in a Starbucks is very precious. I also have to mention Emmy too, not just for the amount of times she has stopped us getting splattered by trams, but for supporting you without being phased at all. Big hug to you both, I will see you very soon. xxx

Emmy Lizzie said...

Personally I think you (and Pearl) are hugely inspirational the way you both continue on in spite of being ill. An INTERESTING photo choice ;)Reading the post nearly made me cry (and I already knew all of the above). I think its a very good post to make people aware xxx

PinkBow said...

What an amazing post & so brave of you to write about it. I suffer from migraines (usually hormonal) but obviously aren't a patch on this. I may have a day or two off work but otherwise I live my life. So I can appreciate how limiting they can be. Well done you for writing about it.

Eve Maria said...

thank you for sharing. I get what basically are very bad headaches, they're not nearly as serious as yours though. Thanks for raising awareness.

Victoria said...

Great to read something like this, I also suffer from migraines, although luckily they seem to be hormone related so its usually once every 2-3 months but on days when I do get them I literally have to stop whatever I am doing for the rest of the day. Sometimes I start to panic if I am going somewhere nice as I start to worry I am going to get one and it will spoil the day for me! Thanks for raising more awareness!

Maria Fallon said...

Thank you for sharing this! I suffer from migraines but nowhere near as bad as this so I can sympathise slightly with what you go through. I hope you manage to get it treated <3

Maria xxx

Unknown said...

I too have suffered from migraines from a young age and I am one of the ones that go temporarily paralysed down my left side, my speech is impaired and light becomes my worse enemy. I tend to take ibuprofens and then sleep the days away to recover. There have been times when my other half has genuinely asked if I'm sure it's just a migraine. I guess it can be quite scary to other people who don't suffer from them when they see how it can affect someone who does.

Thank you for sharing your story about migraines. You are truly one brave and courageous lady, it has to be said.

Pleased to meet you.

xo Amy

theoxfordcomma said...

Oh my gosh, I'm a migraine sufferer too, but your story really puts mine into perspective. I share the slurry speech when an attack is coming - it's the only warning I get.

I hope you find somewhere that will provide the botox treatment, migraines are such a drain on your life.

Molly and the Princess said...

I really feel for you - I have to be honest and say I can't imagine what it must be like to live with such constant, crippling pain but I think you are wonderful and I'm sure your determination to never give up will bring you every success (and hopefully the treatment that will make a big improvement). How lovely to have such great friends too. A very moving post xx

Rosalind said...

Florrie, what an honest and brave piece. I am sorry to hear about what you have been through. Not least with the bullying (talking of which, did you see According to Annika's post on bullying?), but especially with these awful migraines.
I too can understand how something can affect the little things in life - I remember how much back pain I used to be in, and how I had to dress around it and remember to carry bags carefully. I'm glad that mine and Pearl's posts inspired you to make the decision to tell people. The lives behind these blogs are never what they seem.
It sounds like your system has been really messed around by the incident that triggered these dehabilitating migraines. It seems like an awful lot to shoulder, and makes your work as a debutante all the more impressive.
I am sure you have had that awful feeling of "Why me?" in your relation to your problems, and these things do seem so arbritrary and unfair. I am impressed that you have tried your best in the face of a quite considerable adversity.
If you suffered whiplash, have you ever tried Alexander technqiue? I practised it a lot for my back (and in fact this meant that my back hurt less, and looked less twisted than others who had the same degree of curvature as me), but I know that some people also swear by it as a way to relieve migraines and muscular injury.
Of course you might have tried it and found that it did not work for you, but is the only suggestion I can think of that might help to alleviate symtoms.
All I can say is that I am sending you all my love and best wishes, and I hope that at some point these hard problems might just dissolve. Whichever way, I am still in admiration of you - not only for taking the difficult decision to announce it on your blog, but also for using the post to raise awareness of similar sufferers.

KatGotTheCream said...

I too can only imagine what you are going through but you are clearly a very brave, strong and resilient person and your blog is full of colour, life and positivity, which does you even greater credit, given your condition.
Thanks for raising awarenes of this as part of a wider issue too. Great post!

Kit-Cat-Kitty-Cat said...

Well done to you sharing your story. I really don't think people realise just how debilitating migraines can be.
I often get them, nowhere near as horrific as yours, but I might get them at work, or on a night out and it's very hard to explain to someone how you literally cannot do anything but go and lie down.
At work they think you're skiving, on a night out your friends just say to 'forget about it' - as if it's that easy! I just want a dark room and an open window to keep me cool, thanks!
It sounds like you've had a hard ride with your migraines, but it's inspiring to hear that you haven't let it hold you back. Here's hoping you can keep a lid on them.

Kezzie said...

Wow, Florrie, I had no idea your migraines had been going for so long! You are amazing to stay so positive and to continue being such an inspiration despite that! As I said, I get headaches which drive me insane, but they have only been the last couple of years, but I know I just could not conceive how awful it must be to have constant intense migraines which are a whole other kettle of fish! I will keep you in my prayers. I've recently experienced healing so I know it is possible!
Bless you for your honesty (a while back!)and hope you are well! x

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