Challenge Accepted – My Resilience Playlist

I’ve been challenged to write a-post-a-day for 30 days, but I decided my chronic migraine life is a bit too dull/depressing for that so I’m going to give it a different slant instead:

I’ll hit random on my Resilience Playlist and post a link to whatever tune it selects.

The context

Some days I need inspiration – a shot of motivation, courage, strength and determination to keep going.

That’s when I put on my Resilience Playlist.

It’s full of songs I listen to when I need a pick-me-up, when I need reminding of my inner strength, when I need to remember that hard times don’t last, when I need to remember times I’ve bounced back before.

It’s a very eclectic mix and I promise to post the first song it selects – I’m afraid I can accept no responsibility for any lyrics, video content, cheese factor or anything else!

The challenge starts tomorrow…

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When choice gets taken away

Health warning: moaning post – though there is a Gandalf quote to make it all ok if you manage to get through to the end (or just skip straight to that if you like, no-one will know!)

One of the things I find really hard about being ill is that so many of your choices are limited or taken away all together.

You no longer get to decide what, where, when and how you do things – it’s all decided for you by whatever illness has invaded your previously free self.

It’s a very strange feeling and not a pleasant one at all.

I guess for some people their illness comes on suddenly but for me it crept up slowly and became normality before I even knew what was happening.

My choices were limited bit by bit over several years, like a slow but steady erosion of freedom.

Having to leave a meal early here, turning down a party invite there, slowly withdrawing from social circles, squeezing life down to the bare bones just to keep going with work, then seeing work productivity and quality drop off the cliff face as well until all that was left was a mere shell of a person – broken, battered and totally spent.

What I didn’t know at the time was that migraines are progressive – each one changes your brain a little bit and makes you more susceptible to the next one, so it’s easy to get trapped in a vicious cycle where each one triggers off the next. Your brain gets stuck in ‘migraine mode’ and that’s really not a good place to be in, believe me.

I really miss the freedom of being able to do what I want, when I want.

Very little about my day-to-day life now is what I would choose if I was free to do what I wanted. If I could do what I wanted I’d be out working, I’d be going for walks and drives and seeing the beautiful views I miss so much, I’d be seeing friends more often, I’d be helping out more with the housework, I’d be baking and cooking big dinners and doing all the things I used to love to do.

As it is, the migraines have been filling in my diary for me. Their idea of a fun time involves ridiculous amounts of sleep; eating packet after packet of cream crackers (dry – I’ll challenge anyone to a competition, anyone? No?); trying to decide how to orientate myself in this topsy-turvy, vertigo-mad world; sitting and staring (what my husband calls ‘screensaver mode’); mustering all the effort and energy I can just to do some kind of ridiculously simple task then collapsing for hours or days afterwards; having plenty of hot dates with the toilet bowl, etc, etc. Oh yeah, I can so feel your jealousy right now.

When it takes everything you’ve got just to manage your symptoms enough to get through the day, there’s very little space for choice (though I can see you’re wondering how a girl could possibly want more than that, right?)

Add to that the restrictions on driving, the financial implications of not working and all sorts of other things, it’s easy to feel that you’ve lost your freedom altogether.

Interestingly, it’s only since I’ve seen some improvements that it’s become more of an issue – now I’m able to do a little bit more, all the things I’m not able to do and the amount of effort, energy and recovery it takes to do the things I am able to do seems to highlight how much choice and freedom these migraines have taken away.

But there is one choice we’ll always have – we always have a choice in how we respond to the things that happen to us, even if we have no control over the things themselves.

I know I respond better some days than others.

Today has not been a good day.

Today I’ve cried and eaten cake and cried some more.

But in writing this post I’ve at least remembered the things I do have a choice in:

*I have a choice about how I face each day

*I have a choice about how I interact with friends and family and anyone else I come into contact with

*I have a choice about what I say and how I say it

*I have a choice about the kind of person I become – whether I let my experiences make me bitter or whether I decide to learn from them and grow because of them

*I can choose each day to keep on plodding on until we see better days

And if all else fails, you can always rely on a good old quote from Gandalf:

Frodo: I wish the Ring had never come to me. I wish none of this had happened.

Gandalf: So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given us.

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Special delivery

So my new treatment device has arrived…

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Not only is it good for playing innuendo bingo, it’s also a highly developed new technology that’s recently come on the migraine scene.

(You can find out more at gammacore.com if you’re interested)

I feel very privileged to be able to try it, given that it has no real side effects and a relatively high success rate (almost 50% of people saw some reduction in their migraines, which is a good rate for a migraine treatment)

I look a bit silly using it – you have to hold it against your neck and it makes your face look funny (no change there then!) which makes me want to laugh, but it makes my laugh sound proper weird, which makes people try to make me laugh all the more.

But I don’t mind. As one friend said, “you just have to own it”. And looking silly is a small price to pay if it actually works – we should know within a few months.

We’re trying not to get too excited that this might be THE ONE but at the same time we’re very keen to give it a go.

Sooner or later something has to work.

So here’s to trying new things and holding on to hope…

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Cloudy skies make better sunsets

We’ve had some lovely weather recently – clear blue skies and bright warm sunshine (which mainly means I’ve been hiding behind curtains in dark glasses like a vampire but that’s totally beside the point).

Spring has well and truly sprung and there are buds and birds and blossoms everywhere: the world’s a beautiful place to be.

But all this growth and life needs more than just sunshine – it also needs clouds and wind and rain and all sorts of other weather systems that I don’t know anything about.

As lovely as blue sky and sunshine is, if it was all we ever had we’d end up living in a desert and that might not be so fun (I remember someone once saying there’s a reason the northwest is so green – it’s because it rains so much!).

One thing I love about living near Morecambe Bay is the glorious sunsets we get. But I’ve noticed that the best sunsets seem to be after the worst storms.

Perhaps it’s the same with life.

As much as we might want them to pass, the storms and rainclouds in life can be the things that teach us the most if we let them.

It might not be a pleasant process, but we need all seasons and all weathers to live and grow and learn and change.

So I’ll keep trying to do two things:

Fully appreciate the ‘blue sky and sunshine’ bits of life

Accept and embrace and learn from the ‘storms and cloudy skies’ – after all, sometimes they can be the bits that make the best sunsets

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A recent Morecambe Bay sunset taken by my friend Phil Hendry

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Why migraine-free me?

For the people who’ve recently asked how I got in to blogging and why I called the site migraine-free me, and for others who might have been wondering the same

Why do I blog?

I write to help make sense of the thoughts, feelings and experiences that come from living life with chronic/continuous migraines and everything that comes along on this weird and wonderful journey.

Writing helps it to feel more real, helps me to keep a sense of perspective and stops things running round and round my head like a hamster on speed.

It also gives the time and space to express myself properly – something I can’t do very successfully in face-to-face conversation at the minute (a post can take days or even weeks to write, a sentence at a time, nothing’s quick with a migraine!)

I used to journal but all the scribbling out to correct simple migraine-brain mistakes made my beautiful books look a mess and just made me sad. Writing on an app means mistakes can be erased and keeps me a lot happier 🙂

Some posts I make public, some I keep private. I make posts public so friends and family can find out what’s going on if they want to. I don’t want to hide what’s happening and I’m happy to be honest but I want people to make their own decisions about how much they want to know.

I purposefully don’t bring my health up in conversation unless people ask directly (I don’t want to end up sounding like a broken record!) but when it’s in a blog post, people are free to choose what and when they read.

People often ask questions about chronic migraine because they haven’t heard of it before, so I also hope to spread a bit more understanding about my own experiences of a health condition not many people know about.

I said from the start that I would be honest about the different aspects of my journey but I never share these in a bid for pity or sympathy. I hope it never comes across that way – please tell me if it does!

I blog mainly to connect with others – friends/family and people who are going through similar experiences. It’s easy to fall in to thinking that you’re on your own when something difficult goes on for a long time but knowing that people are following the blog lets me know that I’m not alone.

I’ve also found a source of support in the online migraine/spoonie community and it’s been great to meet and learn from others in similar situations.
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Why is it called migraine-free me?

I first chose migraine-free me because my ultimate dream is to be totally migraine-free and I have to keep hoping for this to happen.

But because I’ve come to see that this is highly unlikely, it then evolved into a prompt to use the solution-focused techniques I use so often at work.

Part of this approach is to imagine what life would be like if the thing that you hoped for most came true. For me the ‘miracle question’ is:

What would my life look like if I woke up tomorrow and the migraines were completely cured?

There are so many things I can picture myself being and doing if this did happen – by imagining this hoped-for future I can focus on the bits that are already present in some way or another and work towards the parts that I want to see, even if they end up looking quite different in reality (for example if I was migraine-free I would go out with friends whenever I wanted –> I know friends are important to me –> I can celebrate the times I do get to see or connect with friends and work out how I can try and see or connect with friends more often in my current circumstances)

So that’s how migraine-free me started off, but it’s also come to stand for something else – the part of me that’s still me, despite the migraines.

Even though life has changed almost beyond recognition, I refuse to be defined by my illness and the limitations it imposes on me.

Going through this journey is deeply unsettling and challenges just about everything – I want to be open to changing and learning as I go but I also need to hold on to who I am in the midst of it all.

So that’s why I blog, and that’s why I call the site migraine-free me.

Feel free to ask more questions if you like and I’ll do my best to answer them!

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Sitting in the dust

Health Warning: not quite as positive as the last one, sorry

A strange thing has happened recently.

I mentioned in a previous post (Onwards and Upwards) that we’ve seen some progress – instead of the vast majority of time being red/severe there have been some amber/moderate days and even 5 hours of blissful green/migraine-free hours so far in 2015 (see previous post The Code for info on what these colours mean). Some weeks I’ve even reached the holy grail of 65% of the week on red and 35% of the week on amber (our current target).

This is good news and I should be happy.

But I’m not.

To be honest I’m a bit of an emotional wreck.

It took me a while to figure out why. My logical brain said I should be happy on the amber/moderate days but my emotions didn’t get the memo.

Then I started to do some digging around (a psychologist is never short of interesting material if they try to understand themselves even a tiny little bit!) and realised that the amber/moderate days were the first time in a very long time I’d had any head space to actually process any of what’s been going on over the last however long.

On red/severe it’s literally just a case of getting through the next minute or hour – it’s pure survival mode with no space for thinking or reflecting or processing anything, even if you did have the time or the brain power.

On amber/moderate days there’s just enough let up for your brain to start to process bits of what’s happening, how different life is now and how uncertain the future is.

And it’s totally overwhelming.

So when I think about it again with my *logical* brain, I guess it makes sense. On amber/moderate days, at least 8 months backlog of unprocessed raw grief and turmoil get dumped into the mix.

Marvellous.

Sitting in the dust

I was talking to a friend recently about when life gets tough (we weren’t talking about my situation in particular – this is a universal thing and we all go through difficulties and hardships at one time or another)

She said something that stuck with me:

“There’s a time for sitting in the dust” – for mourning your losses, for acknowledging the hurt and the pain and the sadness, for nursing your wounds and bandaging them up as best you can.

“And then there’s a time to stand” – to get back on your feet and find a way forward, however hard that might be.

There’ll come a time when I’m ready to stand again, but for now I think it’s time to do some sitting in the dust.

And if you want to find me, you might just have to come and sit in the dust with me.

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Onwards and upwards

At last I can write a celebratory post 🙂

The combination of topiramate and nortriptyline seems to be working to some extent and there’s finally been a bit of progress.

Back in January we set a bold target of having less than 65% of the week on red/severe and have managed to achieve that for 4 different weeks so far which is amazing.

I’ve been able to leave the house occasionally and even managed a short stay with friends thanks to an excellent travel buddy and some very understanding hosts – thank you!

The gammaCore rep has agreed a free trial of the device so we can see if it will work before we commit financially so we’ve decided to try this as the next treatment option, especially as it can be used alongside the things that are working already.

So things are looking up and it definitely feels like we’re moving in the right direction.

Thanks to everyone who’s been part of the journey so far – friends, family and those I’ve met online. I know there’s still a long way to go but I’ve really appreciated your kindness and support along the way.

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Easter hope

Happy Easter!

I see today as a day for celebrating new life and holding on to hope.

We have an Easter Tree in our house – apparently it’s a German tradition originally. We hang decorated eggs on branches as a symbol of new life being restored where there appears to be none.

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Whether life seems full or empty, there’s always room for hope. Even if we’ve lost hope for now, I believe Easter gives us hope for the future.

“He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:4

I also see today as a day for celebrating love winning out over everything else.

You broke into the silence and sang a song of hope
A melody resounding in the deep of my soul
You have come running
You tore down every wall All the while shouting
My Love you’re worth it all


No sin, no shame,
No past, no pain
Can separate me from Your love No height, no depth,
No fear, no death
Can separate me from Your love

(Unstoppable Love by Jesus Culture)

Whatever your beliefs or circumstances, my wish is that you’ll find love and hope this Easter.

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Good Friday?

I’ve never understood why today is called Good Friday.

(Except of course that it’s a bank holiday and in 2 days time I get to eat half my body weight in chocolate – oh yeah!)

What’s ‘good’ about an innocent man being betrayed by his friend, put through a sham trial, brutally tortured, publicly humiliated, then killed in the most agonising way imaginable?

I always thought it should be called Bad Friday or Black Friday or anything that didn’t seem to celebrate something so cruel.

But it’s called Good Friday and I’ve never understood it, until this year when I’ve started to see Jesus and the cross in a slightly new light.

Christians often teach about Jesus dying to put right the bad things that we do, and I do believe that (well as much as I believe anything – see previous post on faith 50 shades of grey). It’s amazing to know that we can be totally forgiven and we don’t have to live in guilt or shame any more.

But recently I’ve been wondering, what if Jesus’ death did something else as well, something even bigger and better than that?

Because there’s a lot of stuff wrong with the world that isn’t anybody’s fault.

Children are born with severe disabilities that cause them daily pain and limitations. People get sick. Environmental disasters cause widespread devastation. Death makes unexpected and untimely visits.

I’ve never connected these things up with the cross, because they’re not things I can really say sorry for.

But I’ve been wondering recently whether Jesus died for these things just as much as he died for our individual mess-ups.

And if he did, then maybe he also died for the things I see in my life and the world around me that aren’t quite as they should be (perhaps it’s just me who has this sense that things aren’t how they’re meant to be, but it does seem to be a fairly common feeling among people I talk to – we seem to have an inbuilt sense of justice where death, destruction, disease, etc always feel like intruders, like they don’t really belong).

So maybe he wanted to put those things right too.

I’ve always heard teaching about Jesus dying for our sins (i.e. the bad things we’ve done) and I’m very grateful that he did.

But what if he also died for disease? For disabilities? For death? For the destruction caused by natural disasters? For hunger? For poverty? For injustice?

I don’t think this is a new idea, and there’s probably plenty of people reading this and wondering why I’ve taken so long to catch on (and plenty of others wondering why I’m bothering with some guy who lived and died 2,000 years ago)

I remember once reading something in a book by Steve Chalke where he suggested that we couldn’t survive if we saw God face-to-face because he carries all the suffering of the world and to look on his face and see all that suffering in one go would be too terrible for us to cope with.

I can’t really get my head around all that suffering but it’s an image that’s stuck with me over the years.

I guess it means that when we feel abandoned, betrayed, lost, defeated, in pain, or whatever else we’re going through, we know there’s someone who loves us who’s gone through that same thing, willingly and on our behalf. Someone who’s carried it so we don’t have to.

“A man who suffered, who knew pain firsthand…

It was our pains he carried – our disfigurements, all the things wrong with us…

By his wounds we are made whole.”

Isaiah 53

The ‘being made whole’ bit might not happen how or when we expect it to, but I believe there’s somebody working to rescue and redeem what looks like a lost cause.

And I suppose that might be worth calling ‘good’.

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Post poach – secrets of successful chronic migraineurs

A post on migraine.com caught my eye today. It made some interesting points so I thought I’d share it. You can read it here if you’re interested: 10 secrets of successful chronic migraineurs

If you don’t want to read the whole post (though I’d definitely suggest you do) here are the main points I’ll be remembering from it:

Accept that life will not return to the way it was

Be creative and open to new ways of learning to live with pain

Keep expectations realistic – pain management is not pain elimination

Don’t be afraid to experiment or fail

Accept your vulnerability

Learn to be at peace with pain instead of fearing it

Accept reality as it is and learn to live with it rather than fighting against it

Keep active whenever you can

Know your limits

Don’t give up

Thanks to Tammy Rome at migraine.com for this post poach

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Mindful Mondays – Bitter Sweet Symphony

Sometimes life can seem wonderful, the sun is shining, we’re on top of the world and everything’s going our way.

Then at other times the walls come crashing down, we’re left desolate in the rubble of the blows life has dealt us and everything looks bleak and dark.

The more we try and make sense of these two disparate realities, the more we get twisted in knots.

Some of us believe the bleak and black must be the only reality and we ignore all the good, expecting life will only ever bring us hardship and pain.

Some of us feel uncomfortable with the darker side so we bury it deep and put on a smile that fools even ourselves, expecting life to be wholly wonderful and feeling hurt, surprised and confused whenever anything bad happens.

I’ve lived in both of these camps at different points in my life. I think it’s human nature to be in one mindset or the other, often swinging between the two depending on where life takes us and what it throws at us.

They’ve each served their own purposes to some extent but I’ve recently discovered an alternative way to reconcile the good and the bad bits of life that doesn’t leave me tied up in knots or crumpled on the floor like some kind of emotional train wreck.

The good, the bad and the ugly

There’s a lot of very good stuff in my life – I have an amazing husband, a lovely house and garden, wonderful friends and family, I live in an affluent part of the world where we have shelter, food, water, sanitation, health care, etc.

There’s also a lot of unpleasant stuff that comes with having a significant and currently incurable health condition (though countless scientists are working hard on this – hooray for science and all you lovely scientist people!) I can’t work or drive at the moment, motion and travelling is very difficult so I’m largely housebound, I’ve lost a lot of my independence and freedom, I’ve had to let go of a lot of my hopes, plans and dreams.

Both of these are very real.

Neither has to justify the other or cancel the other out – the good doesn’t make the bad ok, and the bad doesn’t stop the good being good.

The very good and the very bad can co-exist together.

They don’t have to balance out.

Balancing act

I found that when I tried to balance out the good and the bad I got stuck in the middle, unable to feel anything.

Numb.

It turns out that if you try to shut off the bad, you inadvertently shut off the good too.

They both get diluted down to the point where they lose their flavour altogether – the pain of the bad is less, but so is the joy of the good.

I realised that if I wanted to experience the good again, I also had to experience the bad (in ways that felt safe of course – it’s taken time and patience and a lot of love and support from the people around me, it’s not really something that can happen over night).

I’m now at the point where I’d rather taste the full array of what life has to offer than dilute it all down just so I miss some of the more unpleasant bits.

I’m also realising that I don’t have to swing between the bleak and dark (where I expect everything to be hopeless forever more) and the sweet and rosy (where I expect everything to be picture perfect). I can learn to hold the bad and the good together, in harmony, at the same time.

‘Cause it’s a bitter sweet symphony, this life

I’ve come to see life more like the Bitter Sweet Symphony that serenaded my indie youth.

I can hold both extremes together – the very good and the very bad, as well as everything in between.

Life will always be a mixture of the good and the bad, the highs and the lows, the bitter and the sweet.

And that’s ok.

I’m happy to allow them to coexist in harmony to make up the complex yet beautiful symphony of life.
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Previous posts in the Mindful Mondays series:

Mindful Mondays – An Introduction

Mindful Mondays – Primary Pain & Secondary Suffering

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Have a break, have a…

I realised this morning I’ve been saying the same thing for a while now:

“I just want a break”

A break from the seemingly endless run of migraines would be nice, but I know it’s probably unrealistic just now.

So using the what you can change and what you can’t philosophy, I’ve decided to take a break from something else instead – I’m taking a break from changing anything in my treatment plan for a bit. And it feels like a massive relief.

Devising a treatment plan for something as complex as chronic migraine is exhausting in itself. Over the years I’ve tried so many things it took several pages of A4 to list them all out for a recent appointment.

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My daily meds, affectionately called my drug habit, that I take in a teacup from my brother and sister-in-law’s wedding, it makes me smile every day and makes taking the drugs a bit more pleasant

Fortunately I now have an excellent consultant at the National Migraine Centre so there’s plenty of support with it, but there’s still a great deal of time and energy that goes into exploring new treatment options, for example:

*Trying to make sense of research papers, articles, reviews and other people’s experiences, which are often mixed

*The highs of hoping that this will be THE ONE, and the nagging doubts that it might not be

*The financial calculations (many aren’t available on the NHS yet, or have very long waiting lists)

*The weighing up of pros and cons

*Finding out about side effects (“you might go blind and deaf and lose all feeling in your hands and feet, these are all irreversible, but don’t worry, it’s not happened to that many people. Although I suppose if you’re one of the unlucky few it is a bit unfortunate” – actual words said to me, I kid you not)

Then once a treatment option has been decided on, there’s a whole new set of things to deal with:

*The rollercoaster of side effects that affect everything from your mood to your gut to your sleep to your weight to your cognition and everything else in between – these are hefty drugs that certainly make their presence known

*Having to increase the dose just as the side effects start to settle down into some kind of recognisable pattern, however unpleasant that pattern might be

*Trying to decide when to stick, when to increase and when to decrease the dose – Is this as good as it’s going to get? Can I cope with the side effects of a higher dose? Should I decrease it, knowing the side effects will be better but the migraines will be worse? Which do I prefer, migraines or medication side effects? Aaarrgghhh!

Then there’s the point of finally admitting defeat, of knowing that the last few months and all the side effects were for nothing, however much you try and tell yourself that at least you’ve eliminated something else, it doesn’t alleviate the crushing disappointment of another treatment that hasn’t worked, another thing crossed off the ever-reducing list of things to try.

I’m tired of the cycle of hope and disappointment and especially of the side effects associated with medication changes. So I’m taking a break from making any changes to my treatment plan for a few weeks, maybe longer.

No research, no medication changes, no decisions. Just some time to be. A break from the things I can change, even though there’s no break from the things I can’t change. It’s the next best thing, and it feels great.

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**Congratulations – you have unlocked the next level**

I had a review telephone consultation with the National Migraine Centre last week. The consultant was excellent as always and I’d recommend the centre for anyone who needs more than they’re getting from their local services.

Apparently 2 consultations is usually enough to find a solution in most cases but this was our 4th and there’s still a long way to go. However I do feel confident in the consultant to get us at least further along the road than we are at the minute.

I now have an official diagnosis of Migraine Associated Vertigo as well as Chronic Migraine and he’s also looking into another headache condition that he thinks is separate to the migraines – something to do with ‘Trigeminal Autonomic Cephalgia’ that I don’t really understand but would explain the insane middle-of-the-night headaches that have introduced me to a whole new pain threshold and a whole new vocabulary I never even knew I knew but that some of the troubled teens I work with would certainly be proud of if they were there to witness it.

In terms of the migraines, because I’ve now tried three different preventative medications without much success (flunarizine, amitriptyline/nortriptyline and topiramate) we’re now eligible to try a new level of treatments. It feels like we’re playing some kind of crazy computer game and have just ‘unlocked the next level’, as if the last two years of medication trials and ridiculous side effect rollercoasters have just been about scoring enough points to move up to the next priority level. I know that’s not really how it works, but it feels like that sometimes and it’s not much fun.

So I’m now eligible to try botox (which can be considered for chronic migraine if the patient has been unresponsive to three or more preventative treatments). 36 injections of a toxic substance all over your scalp and neck. Nice. Apparently it’s quite excruciating and, as with everything, can have some pretty serious side effects, not to mention a sky-high fee or a ridiculously long waiting list on the NHS.

There are some other medications I can try, but we’re now on to the ones with worse side effects and lower succes rates.

Or I can try the GammaCore device, again very expensive and not available on the NHS. Its not got the most inspiring research evidence – in one study, out of the 4 people who trialled it 2 improved, 1 stayed the same and 1 couldn’t tolerate using the device at all. There’s some more research emerging but it’s a new invention so it’s early days as far as evidence is concerned. And it takes 6 months before you’ll know if it’s working. That’s a lot of investment and a big gamble.

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I feel like I’m gambling with treatments all the time – investing huge amounts of time, effort and money into things that have no guaranteed return.

Even when something does work, or when research suggests there’s a strong chance it’ll be successful, ‘success’ is defined as a 50% reduction in the frequency and/or severity of migraines. Which is a vast improvement, but would still significantly restrict my life. Yes it would be an improvement, but I’m still coming to terms with the fact that there is no cure for this condition/disease/whatever you want to call it.

So that’s where we’re up to. Time to do some more research and make some decisions about what ‘game’ I want to play next. It’s just a shame the pause button seems to be broken…

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One year on…

Today marks an anniversary of sorts, though not really one I want to celebrate.

It was one year ago today, on the evening of Sunday 16th March 2014 to be precise, that the first full migraine struck after coming off the flunarizine (preventative medication) due to serious side effects.

I can remember it well, feeling the all too familiar sensations of headache, nausea, vertigo, sensory disturbances etc starting up, taking a barrage of abortive medications and getting an early night, trusting it would have cleared by the morning.

But it didn’t clear, and one year on (not to mention several medication trials and a whole host of unwelcome side effects later) I’m still waiting for it to leave.

The year of the migraine. Marvellous. Thanks brain. Not.

I managed to keep going with work for 5 months, at a much-reduced productivity and at great cost to all other areas of life and my emotional/mental wellbeing, but I’ve been off work now since summer 2014.

I never thought this would be the way my life would turn out, unable to do the job I love, let alone any of the other things I used to enjoy that gave my life joy and meaning.

[cue violins]

I said this wasn’t an anniversary I wanted to celebrate, but as I write I realise there are some things worth celebrating from this Year of Migraines.

The love and support of my excellent and amazing husband comes top of the list without a doubt.

Followed closely by the family and friends who’ve been there through the last year in so many different ways I couldn’t even start to list them here.

I’ve learnt a lot about myself and about life, even if they’re things I wish I’d never had to learn at all.

I’ve met people, and discovered new things about people I knew already, that have truly inspired me.

I’ve come to value what I do have so much more highly, partly because of what I’ve lost and partly because I’ve realised how fragile everything is.

I’m certainly a very different person to the one I was a year ago.

This past year has really put me to the test, emotionally, physically and mentally. It’s taken me to my limits and beyond more times than I can count.

But I’m still standing. Well, sitting. Crawling maybe. Sprawled in a heap in a darkened room is more like the truth.

But I’m still here. I’m still fighting.

I’m still learning and growing and changing and adapting.

In some ways I’m living my life more fully, even though I’m able to do so much less, because I’m really present in it.

Every moment of life is precious and worth savouring, because you never know what might happen next.

All I have is now, and I want to make the very best of it that I can.

So if I’m having a rant about the migraines, it’s a PROPER RANT, not a polite little grumble.

If I’m enjoying time with friends the migraines are given a back seat for a short while, no matter how bad they are.

And if I’ve got a cheesy 80’s song in my head now because of a line I wrote earlier then I might just turn it into a living room karaoke session (here’s the link just in case you want to join in… Elton John – I’m Still Standing – Go on, you know you want to…)

So maybe it is a celebration of sorts after all.

One year on… The year of the migraine… But I’m still standing…

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The Code

After the Mystery Option C and Dilemma posts, my friend Tony had an idea – if I found it difficult to talk about how I was actually feeling, perhaps I could use some kind of visual symbol or code, like pin badges, to communicate it to those in the know without having to use words.

The more I thought about it, the more the idea grew on me. So I’ve been out scouring charity shops and online for pin badges that could provide a coloured code for how I’m feeling without having to go into great detail unless it’s the right place, time etc to do so.

It’s early days and a bit of an experiment but I thought we could see how it goes. So for those of you interested, here is the code:

(I’ve shared a lot more of my symptoms than I normally would – I’m not doing this for sympathy or pity but because people have asked and this seemed like as good a place as any)

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Green = Hooray! I’m migraine-free, or at least symptoms are mild enough to not interfere with everyday life. This is good news, I shall look forward to wearing this pin very much indeed 🙂

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Amber = A moderate migraine, or a bad migraine on the way out. Things are a considerable effort but I’m pushing through. Most likely to be vertigo, headache, nausea, dizziness and visual disturbances, but plenty of other things might be thrown into the mix along the way. This is currently my idea of “a good day”.

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Red = I’m feeling rougher than a badger’s arse (tribute to Marian Keyes). My head and face hurt so much I think I’m going to die. I can’t concentrate or think straight. The room is spinning and the floor is lurching up and down. My stomach’s churning and I feel like I’m just about to be sick but I probably won’t be, I’ll just stay in intense nausea limbo for the next few hours. I sometimes have a major dip in mood, or I go hyper, neither feels like me. I might also get irritable, upset or anxious for no reason. My body feels like lead and I’m exhausted. I’m clumsy and not completely in control of my movements. I’m super-sensitive to lights, sounds and smells. It’s like having bad flu and food poisoning combined, while also being blind drunk and painfully hungover at the same time.

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Black = total crash. By this point I probably won’t be able to speak or understand what you’re saying to me. I’ve lost all social skills. I’m telling my arms and legs what to do but they’re not responding, in fact they’ve gone completely numb. My face and eye are probably about to start drooping down the left hand side and I really want to be alone because I’m embarrassed but I’m also really scared. Everything looks different, sounds different, tastes different. I’m totally confused and disorientated, it feels like I’m falling down a very long dark hole. I can’t tell you what I need because I don’t even know myself. I’m frustrated and scared and embarrassed and cross with myself and I don’t understand what’s going on or where I am or even who I am. Also known as ‘migraine aura’, fortunately this one only happens 3-4 times in an average week and doesn’t last more than an hour or so at a time.

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So there you have the code. I’ll be trialling it over the next few weeks to see how it works. I’m hoping it will give friends and family a better insight when all I can manage is an “I’m fine”, and I’m also hoping it will help me to tune in more honestly to how I’m feeling. Hopefully it will help me to celebrate on the green and amber days and to take it easy on the red and black days.

Let me know what you think.

And thank you Tony for the idea!

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Mindful Mondays – Primary Pain & Secondary Suffering

Sometimes life sucks.


And there’s nothing we can do about it.

Or is there?

It’s inevitable that we will run in to testing times at some point in life, whether that’s in health, relationships, work, finances, or something else.

These cause us pain, but they can also cause us suffering.

These might sound like the same thing, but mindfulness separates them out and shows that they are actually two separate things, which leads to the conclusion that

You can experience pain without having to suffer because of it

Mindfulness distinguishes between primary pain and secondary suffering:

The primary pain is the actual event or illness or whatever it might be that has happened, or is happening, that we cannot change and is outside of our control.

The secondary suffering is our reaction to the primary pain – the thoughts and feelings that come, and continue to come, sometimes long after the source of the primary pain has gone away.

As bad as the primary pain might be, the secondary suffering (how we respond to it) can escalate things to a whole new level and has the potential to cause far more devastating and far-reaching effects than any primary pain the world can throw at us.

In the context of my own situation, I certainly recognise this to be true. You would think that dealing with continuous migraines would be enough to cope with, but my mind seems determined to complicate matters by adding in all sorts of thoughts and feelings in to the mix:

Will I never be well again???
Am I dying???
How will I cope with…???
What about…???

Once I learnt about primary pain and secondary suffering, I was able to start to separate them out a bit.

Now when a bad migraine starts I can use mindfulness techniques to focus my attention on breathing and the actual sensations of pain in the present moment instead of the thoughts in my head, which I can save for another time when I’m in a better place to look at them.

It frees me up to deal with just one thing at a time and means I don’t get so overwhelmed that I have a major meltdown on top of the migraine itself. At least that’s the theory – some days it works better than others!

Secondary suffering – the ravenous beast

Secondary suffering is like a ravenous beast – it will eat everything we feed it and never get full.

It feeds on thoughts – here are some of its favourites:

*Catastrophising – imaging that THE VERY WORST is going to happen

*Mind-reading – assuming we know what someone else is thinking or feeling

*Fortune-telling – predicting what will happen in the future, or if I do X, etc

*Critical self-talk – our internal bully that never takes a day off, very kind to everyone else but for some unknown reason has developed quite different standards for ourselves

*Unreal ideal – making unfair comparisons between ourselves and other people

*Label maker – generalising one incident and turning it into a fixed characteristic, e.g. I lost a game so I am a loser, I made a mistake so I am a bad person, etc

*Guilty conscience – taking responsibility/blaming ourselves for things that are outside of our control

I know I sometimes treat the Secondary Suffering beast like it’s feeding time at the zoo, and I know it doesn’t bring me any benefits at all.

Life gives us enough Primary Pain, without adding Secondary Suffering into the mix as well!

Primary Pain & Secondary Suffering

There are some things you can change and some things you can’t.

What we can’t change is the primary pain – the actual event or illness, etc.

What we can change is our response to it – which can develop into secondary suffering if we’re not careful.

The next time you experience pain or stress, take a moment to step back and observe your thoughts and feelings from a slight distance. What is the primary pain or issue and what is the secondary suffering your mind is creating in response to it?

Every time you notice it, you can congratulate yourself on becoming a little bit more ‘mindfully aware’.

Want to know more about mindfulness in general? See Mindful Mondays – An Introduction

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Mindful Mondays – an introduction

I’ve mentioned a few times I’ve been using mindfulness over the last couple of months and it’s been really helpful.

A lot of people have shown an interest in it and have asked for more info so I’m starting a series of blog posts called Mindful Mondays.

I plan to publish posts on Mondays (surprise surprise) where I’ll summarise bits of the programme I’m using and give some tried and tested ideas you can try if you want to.

The programme I’m using is called Mindfulness for Health: A Practical Guide to Relieving Pain, Reducing Stress and Restoring Wellbeing by Vidyamala Bunch and Danny Penman (published in the USA as You Are Not Your Pain).

I’m also using the Headspace app, which provides a free trial if you wanted to give it a go to find out what it’s all about. It’s really accessible and well designed with animations, rewards, reminders and lots of other things that keep me motivated and interested.

What is mindfulness?

Mindfulness simply means ‘mindful awaresness’.

It’s about taking a bit of time out to become fully present and aware of your body, your breathing and your surroundings.

It’s about fully relaxing and unwinding for a few minutes each day.

It’s about being compassionate to yourself and other people.

It’s about being purposeful and present in what you do, whatever that may be.

It’s about finding more moments of clarity and calm in day-to-day life.

It’s about living in the present and experiencing this moment instead of getting caught up in the past or the future.

It’s about looking at your thoughts more objectively and becoming more in control of the mind.

All in all, it’s a way of being that’s often lost in our busy and hectic lives.

Does it work?

According to Mindfulness for Health, research has shown all sorts of benefits to using mindfulness:

*It can be as effective as morphine in relieving pain.

*It decreases stress, tension, exhaustion, anxiety and depression.

*It increases creativity, productivity, attention and resilience.

*It improves self-awareness, empathy and self-control.

You can find out more on the Headspace Science page.

That’s what the research says.

All I know is that I’m feeling calmer, sleeping better, feeling more connected with myself and other people and feeling more confident about the future, whatever that might be.

The actual pain is no different but my response to it has changed.

Of course it might be coincidence, or it might be something else, but I certainly notice on the days when I forget to do a session (or when I decide not to do it because I can’t be bothered), that’s when things seem to fall apart, then most of the time they get back on track once I engage with it again.

So I think I can tentatively conclude that it is making a difference for me.

Want to try it?

Mindfulness is simple.

You can practice it right here, right now if you like, wherever you are and whatever you’re doing.

Just follow these 7 simple steps:

1. Tune in to your breathing – don’t try to alter it in any way, just observe it.

2. Focus on the air going in, then out, at whatever pace feels natural for you.

3. Feel how your chest and belly rise then fall as the air moves in and out.

4. Gradually move your attention to focus on whichever parts of your body are in contact with something solid, e.g. your feet on the floor and your bum and legs on the chair. Those are your anchor points.

5. Allow yourself to feel heavy and relaxed, allowing gravity to pull you down so you feel fully grounded to your anchor points.

6. Return your awareness to your breathing, focusing on the air as it flows in and out.

7. Close your eyes for a few moments and savour the feeling of your consciousness being connected to your body and your breathing.

You’ve just experienced mindful awareness, also known as mindfulness!

See you next week for the next Mindful Monday post

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Picture from the “Mindfulness for Health” book

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It’s not all doom and gloom

I’m aware that my posts have been a bit more negative recently.

I’m not sure whether I should apologise for that or not – I did say I’d be honest after all.

But I do want to redress the balance a little bit so that the blog reflects my everyday life a bit more and doesn’t just become a venting space.

It’s certainly been a tough couple of months adjusting to the news that I’m in a marathon not a sprint, especially as I don’t even like running in the first place.

But I am starting to see a few rays of light shining through.

I’ve started on a second preventative medication (nortriptyline again) at the same time as the topiramate and the combination of the two gave me 5 blissful migraine-free hours in February 🙂

We’ve acquired 3 beautiful hens that a friend could no longer take care of – I was very nervous about taking responsibility for another living thing when I can barely take care of myself (my husband dealt admirably with the meltdown on the day they arrived!) but I set myself the challenge of doing at least one thing for them each day and between my husband, our lodger and I, we’ve managed to keep them alive for an entire week (even more impressive when you consider the number of ‘dispatching’ methods our lodger is acquainted with!)

So I’ve been out in wind, rain, snow, hail and sun (a sunny day being the worst of them all for a light-sensitive migraineur) and thoroughly enjoyed our little feathered friends. They’re surpringly peaceful birds and the fresh eggs are delicious and very satisfying knowing we’ve earnt them.

We had a big family gathering last week which was excellent and really lovely to see everybody and catch up properly – I’m very fortunate to have such a wonderful family.

I’ve started helping out at one of our church’s youth groups, which I love, I might only be making hot chocolates and serving cakes but it’s great to be a part of something so alive and vibrant and to get to know such quality young people, even if it does wipe me out for the next day or so.

I’ve also been referred for some counselling to help with coming to terms with everything, which should start in the next few weeks.

And the mindfulness programme is going well – look out for the “Mindful Mondays’ posts if you want to know more.

So it has been tough, but it’s not all doom and gloom.

If nothing else, spring is on it’s way, and that always makes me smile

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Mystery Option C

Thank you so much to everyone who responded to the previous post Dilemma, either in person or online.

I’ve really appreciated your honesty on how you talk about (or more often don’t talk about) invisible illnesses with friends and family.

It seems there are a few key themes:

People with invisible illnesses tend to play down how they are feeling to protect the people they care about.

When pain continues for a long time, the person experiencing it tends to stop talking about it. They even stop admitting the pain to themselves to some extent.

Denial is a survival tactic. It can be effective in certain situations but causes damage if left unchecked.

I said in the previous post that I felt there were 2 options when faced with the invisible illness of chronic migraine (migraines that go on and on for months and months without a break)

Option A: mope around and complain all the time.

Option B: smile, keep calm and carry on.

But I started to wonder if there might be a Mystery Option C. One that would enable me to admit to myself how bad I’m feeling without falling to pieces and would also provide a way to communicate this to other people in a way that’s helpful for them and for me.

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So after hearing your responses, here are my current thoughts about that Mystery Option C.

When someone says “How are you?” I don’t want to say “I’m ok” when I’m not. But I also don’t want to become a snivelling snotty heap on the floor. So I’m trying out a new line:

“Life is really tough at the minute, but…”

With this response, I can acknowledge that things are tough without going in to great detail (unless it’s at the right time, in the right place, with the right person). Then I can move on to the positives, e.g. “I’ve got good friends around me” or “I went for a nice walk yesterday” or “I had a migraine-free hour last Monday” (I really did – the first of 2015 – it was amazing!)

I’m giving it a trial period – if you’re on the receiving end, let me know what you think…

In denial

One thing I have come to realise is that I’m very much in denial to myself about how much pain and discomfort the migraines cause.

After the previous blog post I was touched by how many friends reassured me I can be totally honest with them and tell them just how bad I’m feeling and not hold anything back.

It was then that I realised I don’t intentionally not tell people, I’m genuinely not telling myself either.

If all you get is a flat “I’m ok”, that probably is all I’m feeling, it’s all I’ll let myself feel. Because to feel it full force would be totally overwhelming.

(I do feel it occasionally. I feel it in the mornings, when I wake up and a wave of profound pain hits my head and the nausea and vertigo rudely yells that it wasn’t all a nightmare and there’s a whole new day to get through. But after a couple of hours I’ve adjusted enough/tuned it out enough to get on with the day, even if it is at a snail’s pace.

And I feel it when I have migraine-free hours. I had one last Monday, it was beyond amazing, I sang and danced and laughed and it was blissfully beautiful. But then they pass and the migraines return with a bump and a thump. And then I really feel the pain – both the physical pain and the emotional ‘here we go again’.)

I realised I’ve inadvertently trained myself to disassociate from the pain of the migraines.

And in doing so, I’ve become disconnected from myself and from the people around me.

I’ve shut down and I’m constantly tuning the migraines out as much as I can. But that in itself takes a mammoth amount of effort, which I’ve realised leaves less energy for the things that really matter.

I’ve managed to numb the pain, but at the same time I’ve accidentally numbed emotions and relationships. Not completely, but enough to have noticed things aren’t the way I want them to be.

I’ve had to learn the hard way that distraction is ok at times, but I can’t keep it up indefinitely (I tried that approach and it didn’t do me any favours).

So if I want to connect again, it looks like I need to be more honest with myself about how I’m actually feeling and to have true compassion for my pain.

I also need to be vulnerable with the people around me. But that takes effort. And it’s painfully difficult. I’ve lost such a lot, and my sense of security is fragile. I’m scared of losing more. So I put up walls to protect myself. But all that achieves is to push away the very people I’m scared of losing.

I want to live my life fully connected to the people around me. If that means I have to acknowledge what’s going on on the inside too, then that’s what I’ll do. I believe it’s worth it, though it might not be easy.

I’ve started to take some baby steps towards this, but it’s going to take time to change some strongly ingrained survival tactics.

If you’re interested, here are 3 of the things I’m using to help overcome some of the denial:

*Regular ‘venting’ sessions with a few people I can be totally honest with.

*Practicing mindfulness as a way of ‘tuning in’ to how my body is actually feeling (interesting stuff, more on this in another post)

*’10 second moans’ – creating an opportunity to tune in and also to tell people how I’m feeling without it taking over a whole conversation. Sometimes I’ll even be blatant, e.g.

“Can I have a 10 second moan?” in the middle of dinner.

“Yes of course” (I have some very nice people in my life).

“My head feels like it’s being stabbed with a screwdriver”

or

“I hate migraines and I want them out of my life, SCREW YOU MIGRAINES”

And then I’ll ‘grr’ or ‘aarghh’ or pull a woe-is-me-it’s-the-end-of-the-world face or do a rude hand gesture at some invisible migraine beast.

And then it’s done, and I’ll look a bit sheepish for having actually shared what’s actually going on inside. And then I’m surprised to find that the people I’ve told don’t mind, they haven’t left, they don’t look disapproving. In fact they’re a bit relieved to know why I’ve been grumpy all evening.

So there you have it – my current thoughts on Mystery Option C. It’s still a work in progress and probably will be for a very long time to come. But that’s ok – life can never be boring because there’s always something new to learn!

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Dilemma

Migraines are invisible.

Which means no-one can see just how much devastation they cause.

On the inside, it’s like a big-budget disaster movie. Tornados wreak havoc, tsunamis broil out of control, volcanos erupt sky-high. Everywhere you look the landscape has been ravaged beyond recognition and there’s desolation as far as the eye can see.

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But on the outside it’s more like desert island discs; all is calm and barely a ripple breaks the surface.

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This leaves me with a dilemma.

Option A

Mope around and complain all the time

Pros: people know more about what it’s like and what I’m going through

Cons: it makes me feel worse and I’m not very good company

Option B

Smile, keep calm and carry on

Pros: it distracts me from the pain and it keeps me focused on the positives

Cons: people don’t realise how bad it is, or think I must be faking it altogether, or I get comments like “you’re looking bright and well, you must be doing so much better” when actually I feel like I’ve just been hit by a ton of bricks.

My default position tends to be Option B. When I’m with people I much prefer to laugh and joke and chat and maintain as much sense of normality as I can.

Occasionally, I find myself making forays into Option B. After all, it can be lonely feeling that nobody knows or understands what’s really going on inside.

But it doesn’t happen often. Because most of the time I think I’m in denial, even to myself.

I’ve become quite the expert at disconnecting from the pain and discomfort over the years. It’s a coping mechanism that’s served me fairly well, on the whole.

But recently I’ve had a bit more time to think and reflect. I’ve discovered a fresh perspective, and one that’s not all that pleasant to realise – when I disconnect from myself, from all the torment inside, I also disconnect from the people around me.

But I find it so hard to be honest about how I’m feeling, about how my whole body actually feels like a rag doll caught up in a permanent hurricane. I don’t admit it to other people; I rarely even admit it to myself.

I don’t know why.

When people ask ‘How are you?’ I find myself saying ‘Oh, I’m ok’.

A few of my nearest and dearest might be privileged to a ‘Not very good’ or ‘A bit rough’ on a really bad day.

And I expect them to be telepathic, to know everything from the look on my face or the tone of my voice. But my face and my voice have had years of practice at pretending things are ok, so they don’t actually give much away. I’m not a good actor (ask anyone who’s ever played poker with me), I’m just so used to shutting off and ignoring it all.

I’m not being deliberately awkward.

I’m not trying to hide anything on purpose.

So why?

I’ve come to the conclusion that it’s because the migraines are constant. And that has seriously warped my perception of ‘normal’.

When I used to have episodic, one-off, start-stop migraines, it was quite obvious to myself and everyone around that SOMETHING TERRIBLE IS HAPPENING RIGHT NOW. I’d go from feeling well to feeling the worst I’d ever felt (sadly not an exaggeration) to feeling well again in a couple of days. The storm was fierce, but it would pass. It’s like when we get freak weather – it’s all anyone talks about.

But in this current round I’ve now had 9 months of continuous migraines. 9 months. That’s 270 days, or 6,480 hours, of which 68 hours have been migraine-free (I record these as part of my attempt at a solution focused approach).

That means only 0.01% of the last 9 months have been migraine-free. The most recent migraine-free hours were in November – that’s two whole months away. Right now, I actually cannot remember what it feels like to not have a migraine.

When a bad storm comes, we can hole up inside and stay warm and dry, waiting for it to pass. But when it lasts for days, we slowly adapt. There comes a point when we can’t stay home any longer, something forces us out. Maybe we need a pint of milk, or we need to check on a friend. So we put on every waterproof we’ve got and out we go – head down, hood up – into the storm.

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The weather hasn’t changed, but our attitude and our perspective and our response has changed. And we get used to it. Yes, we prefer beach barbecues in the sun, but this is what we’ve got right now, so this is what we deal with.

It becomes our normal.

So when I say “I’m ok” I mean “chronic migraine ok”, which isn’t really ok at all, but by comparison to what it could be I’m having an ok day.

When I say “not very good”, I mean “chronic migraine not very good”, which let’s face it isn’t very good at all.

But this is what I’m realising – if migraines are invisible, then I’m the only person who knows what I’m going through. So if I don’t tell anyone, then nobody knows. And there’s no point getting frustrated that nobody knows what I’m going through if I don’t tell them!

But how do I do that without becoming a boring, moping, complaining ‘sicky’ person all the time??

The “I’m ok” response has become deeply ingrained over the last few years. It’s what I had to do to get by. But I’m done with just getting by.

And I’m beginning to wonder whether there might be a mystery Option C…

So I’m wondering:

How can I become more connected with what’s going on inside without it completely destroying me?

How can I learn to live in a more open and connected way with the people around me while I’m also living with chronic migraine?

Writing this blog has helped me to start being honest with myself and to share what I’m finding out with those around me, but I’ve still got a long way to go.

Over to you…

Do you have an invisible condition that wreaks havoc on the inside but shows nothing on the outside?

How do you manage this experience?

How do you communicate this to friends and family?

Thank you in anticipation, any thoughts or advice will be very much appreciated!

You can leave a comment below or email me at migrainefreeme@yahoo.co.uk. If you know anyone else who might have any words of wisdom I’d love to hear from them too.

You can find out more about my experience of chronic migraine here – My Brain BSOD

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