What does migraine mean to me?

It’s migraine awareness week and The Migraine Trust have suggested that people share what migraine means to them, so here goes…

Migraine means regularly experiencing pain that made a broken foot seem so insignificant I didn’t even notice, but also discovering an inner strength beyond anything I ever thought possible

Migraine means losing the use of my left side on a regular basis and having to ask for help with simple things like taking off a jumper or cutting up a meal, but learning to see the funny side

Migraine means dropping things, bumping into things and randomly falling over, but still standing tall

Migraine means constantly seeing spots, tv-type static and flashes and squiggles of silver white light, but also seeing a far broader perspective on life than ever before

Migraine means being so sensitive to light that I live most of my life like a vampire, but also being far more sensitive to the people I meet and the things they’re going through

Migraine means losing the ability to speak or understand what people are saying, but also finding new and better ways to communicate

Migraine means losing control of every part of my life, even bodily functions like my bladder and my bowels, but also coming to a place where being out of control of my life is ok

Migraine means getting lost, even in my own home or street, but also finding parts of myself I never even knew existed

Migraine means watching my life fall apart, but also realising just how precious the life I have left really is

Migraine means feeling like Alice in Wonderland – sometimes it’s me shrinking or growing like a giant, sometimes it’s the things around me that appear to be changing – but also learning to understand and even embrace change in life instead of fearing it

Migraine means losing out on social events and missing people terribly, but also valuing my friends and family more highly than ever before

Migraine means working harder than I’ve ever worked in my life just to accomplish the simplest of tasks (completing a doctorate, working in Ugandan refugee camps and supporting some of the most difficult and damaged children in our society doesn’t even come close to the effort and energy it now takes to shower, cook a meal or have a conversation) but also knowing that the things I choose to ‘spend my spoons‘ on are really worthwhile

Migraine means not being able to remember things, process information or make decisions, but still deciding to look at each day with gratitude and to see every experience as an opportunity for growth

Migraine means not being able to work out money in shops any more, but also realising the things that really count have very little to do with money in the first place

Migraine means losing my driver’s license and feeling embarrassed using a disabled person’s bus pass, but also feeling grateful that I’m now able to get out of the house at all and glad I discovered the joy of triking

Migraine means losing my identity because I can’t do any of the things I used to, but also finding out that I’m valued just for being me and that the person I become is more important than the things I do

Migraine means getting frustrated at losing my freedom and independence, but also feeling more connected to those whose freedom is restricted in different ways

Migraine means feeling so dizzy and ill with vertigo that I don’t even know which way is up any more, but also finding out that people have stuck around even when life has been turned inside out and upside down

Migraine means having something else dictate what I can and can’t do and feeling like choice has been taken away, but also discovering that I always have a choice in how I respond to things

Migraine means fighting a daily battle, and smiling through it

Migraine means wanting to give up some days, but deciding to carry on

Migraine means walking through hell, and still holding on to hope

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My motor weakness test – ‘close your eyes, lift both arms to what feels like the same height, then open your eyes’. Some days they’re almost the same, on a really bad day the left barely leaves my side

PS Several people have asked recently – “Is it ok to ‘like’ your blog posts on facebook?!”

The answer is yes! I know by liking it you’re not saying you like the situation, I take a ‘like’ to mean a sign of support and encouragement.

Someone joked that facebook needs a ‘the situation sucks but we think you’re awesome’ button or something similar and I’ve often wanted one of these for other people’s posts, but until then the ‘like’ button will have to do!

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Mindful Mondays – All Aboard

One of the things I’ve learnt from my mindfulness practice is that our thoughts and feelings are something separate to the ‘core being’ (or whatever you want to call it) that does the thinking and the feeling.

Practicing mindfulness has given a bit more awareness that the thoughts and feelings I experience are not necessarily ‘true’.

This gives me the freedom to take a step back and observe them a bit more objectively.

I like to think of it like this:

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I imagine every thought or feeling is a bus passing by.

It’s up to me whether I get on it or just observe it and let it pass me by.

It’s very interesting (and sometimes quite funny) when I realise the ‘buses’ I board without a second’s hesitation, whisking me away before I’ve even realised what’s happened.

But at least by building awareness I can choose to get off at the next stop instead of getting carried too far away.

It’s been interesting to realise that my thoughts and feelings are not ‘me’, and they may not even be true.

I certainly don’t manage it all the time, but I’m learning lots about myself as I go and I figure that’s the main thing really. Worrying about getting it right is just another bus I can choose to board… or not.

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Bridge of Light

Ok, so I didn’t do so well with the blog-a-day challenge. There’s been a lot going on that’s taken all my energy and brain power so there’s been none left over for blogging. I won’t bore you with the details but when this song came on the playlist today I thought I’d share it along with a bit of an update on some of the other things that have been happening as people have been asking where I’ve been and what’s been happening.

I’ve been making good progress on the combination of treatments and especially the gammaCore – last week was 62% moderate/amber which is amazing and the first time amber has outweighed red/severe since starting this diary system in January.

I’ve been feeling more alive and able to do so much more than I was (as long as I remember to pace myself – that’s the hard bit!)

Travelling has been much more manageable with the gammaCore and I’ve been able to have some trips out and even a weekend away in the lakes with friends which was lovely.

A group of friends have offered to buy me my very own trike which is wonderful and coincides with the perfect model coming available this week. I’m really touched by their generosity and have been compulsively checking the trike company’s website to see when the ordering system goes live because I just can’t wait!

I’m beyond excited about the imminent arrival of my brother and sister-in-law’s baby, due this week. First grandchild for my Mum and Dad and first time my husband and I will be an Aunt and Uncle 🙂

I’ve started the counselling I’ve been waiting so long for – it’s been really good but uncovered a shed-load of grief relating to the migraines and the massive impact they’ve had on my life and the people around me. I’ve decided to deal with the grief head-on which has been quite a rollercoaster and left me a bit of a wreck but I decided I’d rather work through it and come out the other side than stay stuck where I was – more on grief and illness in another post on another day I think.

So that’s where I’m up to – moving forwards, enjoying the good things and celebrating the progress that we’re seeing while also trying to process the grief and all the complex thoughts and feelings that get thrown up along the way.

And so when this song played this morning I thought I’d share it, because sometimes we need reminding of the bigger picture and how our approach to situations can make all the difference.

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Mindful Mondays – Taking hold of now

It’s easy to live our lives caught up in the past (reliving mistakes and regrets or wishing things could go back to how they once were in some magical bygone era) or the future (things we hope for and dream of that may or may not come to pass).

Of course there’s nothing wrong with focusing on the past and/or the future, there’s lessons to be learned and joy to be had in both.

But there is a risk – the risk is that we miss what’s happening today.

It’s easy to become so absorbed with what isn’t that we forget to embrace what is.

I think I get lured by false promises of the past and the future – the past was simpler (apparently) and the future promises certainty and answers and all the things that today lacks.

But when I get there, all I find is another ‘now’, filled with more of the same, plus a little bit extra that I couldn’t have anticipated even if I’d tried.

I’m learning (slowly, painfully and with lots of setbacks and false starts) that the more time I spend in the ‘now’, the easier it becomes to accept what is instead of desperately holding on to what isn’t, and the more I appreciate what I do have instead of focusing on what I don’t have.

Whatever we have, right here and now, may not be perfect, but it’s real.

Memories and dreams are important, but ‘now’ is what really counts.

And I don’t want to spend my life so caught up in memories and dreams that I forget to live in the now that I’ve actually got.

So I’m taking hold of the chaotic, beautiful, powerful, fragile, unknown, uncertain ‘now’ and vowing to live it to the full.

Because that’s where the life is.

butterfly

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Resilience tune #14

A nice bit of Sunday morning cheesy tune-age from the shuffle button today…

Bring it all back by S Club 7

Don’t stop
Never give up
Hold your head high
And reach the top

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Resilience tune #13

I think we’re gonna make it…

Buck Rogers by Feeder

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Resilience tune #12

I accidentally missed a couple of days – ended up getting caught up in listening to the tunes instead of writing the posts – oops!

Here’s the tune selected by the shuffle button today – the artist is a personal favourite of mine who I came across through friends. She writes/sings about hope, pain, holding on and walking through the ups and downs of real life with friends and family by your side. It’s particularly interesting/inspiring to follow her own journey as it progresses through her albums.

You can listen to the track on the Bandcamp website here

Or visit her website here

Keep believing in love by Becky Higg

You are beautiful and brave
You bring beauty to this world

Keep believing in love…

I’m sorry that it hurts so much
I’m sorry there’s no fairytale

Keep believing in love…

I wish that I could fix it all
Just know that I am proud of you

Keep believing in love…

You bring beauty to this world
It’s true you do

So look out for love,
It comes your way,
Look out for love…

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Resilience tune #11

Higher Ground – Stevie Wonder/ Red Hot Chilli Peppers

It was the Chillies version that was chosen by the shuffle button but seeing as I like both I thought you can choose whichever you prefer here (I did warn you my music collection was a bit eclectic!)

People keep on learnin’ 
Soldiers keep on warrin’ 
World keep on turnin’ 
Cause it won’t be too long 

Powers keep on lyin’ 
While your people keep on dyin’ 
World keep on turnin’ 
Cause it won’t be too long 

I’m so darn glad he let me try it again 
Cause my last time on earth I lived a whole world of sin 
I’m so glad that I know more than I knew then 
Gonna keep on tryin’ 
Till I reach my highest ground 

Teachers keep on teachin’ 
Preachers keep on preachin’ 
World keep on turnin’ 
Cause it won’t be too long 
Oh no 

Lovers keep on lovin’ 
Believers keep on believin’ 
Sleepers just stop sleepin’ 
Cause it won’t be too long 
Oh no 

I’m so glad that he let me try it again 
Cause my last time on earth I lived a whole world of sin 
I’m so glad that I know more than I knew then 
Gonna keep on tryin’ 
Till I reach my highest ground

Till I reach my highest ground 
No one’s gonna bring me down 
Oh no 
Till I reach my highest ground 
Don’t let nobody bring you down (they’ll sho ’nuff try) 
God is gonna show you higher ground 
He’s the only friend you have around 

Or the RHCP alternate ending:

An’ Stevie knows that, uh, no-body’s gonna bring me down.
Till I reach the highest ground.
’cause me ‘n’ Stevie, see, we’re gonna be a sailin’ on the funky sound
Till I reach the highest ground.
Bustin’ out, an I’ll break you out, ’cause I’m sailin’ on.
Till I reach the highest ground
Just, uh, sailin’ on sailin’ on the higher ground
Till I reach the highest ground

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Resilience tune #10

I was very happy when the shuffle button chose this today:

Everybody’s Free (Wear Sunscreen) by Baz Luhrmann

Lots of wisdom hidden here – if you’ve never heard it before (or if you only vaguely remember it) I’d really recommend a listen…

Ladies and gentlemen of the class of ’99…

Enjoy the power and beauty of your youth, oh, never mind
You will not understand the power and beauty of your youth
Until they’ve faded but trust me, in 20 years, you’ll look back
At photos of yourself and recall in a way you can’t grasp now
How much possibility lay before you and how fabulous you really looked
You are not as fat as you imagine

Don’t worry about the future
Or know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum

The real troubles in your life are apt to be things that never crossed your worried mind
The kind that blindsides you at 4 p.m. on some idle Tuesday

Do one thing every day that scares you

Don’t be reckless with other people’s hearts
Don’t put up with people who are reckless with yours

Floss

Don’t waste your time on jealousy
Sometimes you’re ahead, sometimes you’re behind
The race is long and in the end, it’s only with yourself
Remember compliments you receive, forget the insults
If you succeed in doing this, tell me how
Keep your old love letters, throw away your old bank statements

Stretch

Don’t feel guilty if you don’t know what you want to do with your life.
The most interesting people I know didn’t know at 22 what they wanted to do with their lives
Some of the most interesting 40-year-olds I know still don’t
Get plenty of calcium
Be kind to your knees
You’ll miss them when they’re gone

Maybe you’ll marry, maybe you won’t
Maybe you’ll have children, maybe you won’t
Maybe you’ll divorce at 40, maybe you’ll dance the ‘Funky Chicken’
On your 75th wedding anniversary
Whatever you do, don’t congratulate yourself too much
Or berate yourself either
Your choices are half chance, so are everybody else’s

Enjoy your body, use it every way you can
Don’t be afraid of it or what other people think of it
It’s the greatest instrument you’ll ever own

Dance, even if you have nowhere to do it but your own living room
Read the directions even if you don’t follow them
Do not read beauty magazines, they will only make you feel ugly

Get to know your parents, you never know when they’ll be gone for good
Be nice to your siblings, they’re your best link to your past
And the people most likely to stick with you in the future

Understand that friends come and go
But a precious few, who should hold on

Work hard to bridge the gaps in geography and lifestyle
For as the older you get, the more you need the people you knew when you were young

Live in New York City once but leave before it makes you hard
Live in northern California once but leave before it makes you soft

Travel

Accept certain inalienable truths
Prices will rise, politicians will philander, you, too, will get old
And when you do, you’ll fantasize that when you were young
Prices were reasonable, politicians were noble
And children respected their elders

Respect your elders

Don’t expect anyone else to support you
Maybe you have a trust fund, maybe you’ll have a wealthy spouse
But you never know when either one might run out

Don’t mess too much with your hair
Or by the time you’re 40 it will look 85

Be careful whose advice you buy but be patient with those who supply it
Advice is a form of nostalgia, dispensing it is a way of fishing the past
From the disposal, wiping it off, painting over the ugly parts
And recycling it for more than it’s worth

But trust me on the sunscreen

If you’re wondering what these resilience tunes are about or why I’m posting them you can find out here

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Resilience tune #9

The shuffle button has managed to find a Feel-Good-Friday-Favourite-From-Five 🙂

Keep on Moving by 5ive (so 90s!)

I woke up today with this feeling
That better things are coming my way
And if the sunshine has a meaning
Telling me not to let things get in my way

When the rainy days are dying
Gotta keep on, keep on trying
All the bees and birds are flying
Ahhhh…
Never let go gotta hold on and
Not stop ’til the break of dawn and
Keep moving, don’t stop rocking Ahhhh…

Get on up
When you’re down, baby,
Take a good look around.
I know it’s not much,
But it’s okay
We’ll keep on movin’ on anyway

Feels like I have should be screaming,
Trying to get through to my friends
Sometimes it feels that life has no meaning
But I know things will be alright in the end

When the rainy days are dying
Gotta keep on, keep on trying
All the bees and birds are flying
Ahhhh…
Never let go gotta hold on and
Not stop ’til the break of dawn and
Keep moving, don’t stop rocking Ahhhh…

Get on up
When you’re down, baby,
Take a good look around.
I know it’s not much,
But it’s okay
We’ll keep on movin’ on anyway

Keep moving forwards, whether you’re running, skipping, jumping, walking, plodding or crawling, even if you’re taking a break in the pit stop, that’s ok – you’re still in the race and that’s all that matters, just keep on moving on!

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Getting creative

Travelling with migraine is like signing up a for a voluntary torture session, which is why I’ve only been enduring it when I absolutely have to.

Even with every trick and potion known to mankind, just the 5 minute car journey into town manages to make me feel spectacularly sick and triggers a stonking migraine that wipes me out for several days after.

Any vehicle does it, bus, train or car. I always travelled better as a driver than as a passenger, so having to surrender my driving licence due to the migraine-associated vertigo back in January was a double blow.

So I’ve been limited to one town trip a week for as long as I can remember (fortunately I do good stuff when I’m there which makes it worthwhile, but if someone invented a magic machine that meant I could get to places without having to do the travelling in between I’d be insanely happy)

Being stuck at home all the time isn’t much fun so we’ve been trying to come up with alternatives for ages, but the migraines seemed to thwart us at every turn. Walk? Too dizzy. Cycle? Can’t balance. Great glass elevator? Not yet invented in real life – come on Willy Wonka (and if you could invent a migraine-defying lollipop at the same time that would be awesome, thanks!)

But then some conversations between my mum, my husband and an eco-friendly friend led to the revelation that there is such an invention as the adult trike, which might just solve the transport/balance issues.

And our wonderful eco-friendly friend just happened to have one I could borrow for a bit 🙂

So I’m very pleased to introduce my new (borrowed) wheels…

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I’ve got some funny looks and it’s started a lot of conversations with random strangers but the trike, combined with our excellent local canal/cycle paths, has given me more freedom and independence than I’ve had in a very long time.

I literally feel as excited as I did when I passed my driving test – I can’t even put into words how good it is to feel free after feeling trapped for so long, or how pleased I am to have made enough progress with the treatments to even consider riding the couple of miles into town and back.

I’ve found my freedom again and it’s very, very good.

Turns out there’s a solution to every problem if you think creatively enough!

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Resilience tune #8

The ultimate power tune (and one that I somehow always manage to get caught diva-rocking to when I don’t realise anyone else is around, oops!)

Fighter – Christina Aguilera

‘Cause if it wasn’t for all that you tried to do, I wouldn’t know
Just how capable I am to pull through
So I wanna say thank you
‘Cause it

Makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter

Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter

‘Cause if it wasn’t for all of your torture
I wouldn’t know how to be this way now
And never back down
So I wanna say thank you

I am a fighter and
I ain’t gonna stop

It’s the battles we face that make us who we are, regardless of whether we win or lose.

I’m proud to be a fighter and my main hope is that I can become just that bit stronger and wiser with each thing life throws my way.

I hope you find strength in whatever battles you’re facing, and/or make peace with the things in life that have made you who you are along the way, honouring the pain and the scars but not letting them have the final say – they’re part of the story but not the whole story.

Keep fighting – Aguilera style!

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Resilience tune #7

Yes!

One of the first songs in the playlist and the tune I did the Haka to every morning to motivate myself to write my thesis a few years ago – probably not what the neighbours expected to see while hanging the washing out but nevermind, with a tune like this there’s only one thing for it – turn it up and sing it loud

Eye of the tiger – Survivor

Trigger warning – video contains lights and travelling motions

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A celebration of frustration

You might have gathered from some recent posts that I’ve been getting frustrated recently.

In fact, I’ve been more frustrated than if I was playing in a tournament of the game that drives you popping mad
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The limitations of not travelling, not working and generally not being able to do very much have really got on my nerves.

I’ve been well enough to feel bored and frustrated but not well enough to do the things I want to do.

But we’ve decided that this is a good thing.

It means we’re seeing progress at last 🙂

For so long I’ve just been in survival mode but I’m finally moving out of that now.

Even though this new phase might be bringing it’s own challenges, it’s certainly worth celebrating when we look back at where we’ve come from.

So I will endeavour to celebrate the frustrations and the boredom as progress and focus on how far we’ve come instead of how far there still is to go.

I’ll try and follow the advice about pacing myself instead of going with the instincts that lead to a ‘boom and bust’ cycle (ridiculously hard in reality, let me know if you have any tips on this)

And I will continue to be grateful that I even have enough energy and head space to feel frustrated – that in itself is major progress!

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Resilience tune #6

Grateful to the shuffle button for this bit of Oasis on a Tuesday morning, and even more grateful to all the wonderful people in my life – thanks for being awesome!

Stand by me – Oasis

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Resilience tune #5

Song 5, and in case you’re wondering why/what these posts are about – click here

Learn to fly – Foo Fighters

A song that makes me dream of flying high but also reminds me that I’m human and learning and that mistakes are ok. Plus the video, with guest appearance from Tenacious D, makes me giggle 🙂

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Resilience tune #4

Great song, great video, I think the words speak for themselves…

“Hall Of Fame”
(The Script feat. Will.I.Am)

Yeah, you can be the greatest
You can be the best
You can be the King Kong banging on your chest

You can beat the world
You can beat the war
You can talk to God, go banging on his door

You can throw your hands up
You can beat the clock (yeah)
You can move a mountain
You can break rocks
You can be a master
Don’t wait for luck
Dedicate yourself and you gon’ find yourself

Standing in the hall of fame (yeah)
And the world’s gonna know your name (yeah)
‘Cause you burn with the brightest flame (yeah)
And the world’s gonna know your name (yeah)
And you’ll be on the walls of the hall of fame

You can go the distance
You can run the mile
You can walk straight through hell with a smile

You can be the hero
You can get the gold
Breaking all the records they thought never could be broke

Yeah, do it for your people
Do it for your pride
How are you ever gonna know if you never even try?

Do it for your country
Do it for your name
‘Cause there’s gonna be a day…

When you’re standing in the hall of fame (yeah)
And the world’s gonna know your name (yeah)
‘Cause you burn with the brightest flame (yeah)
And the world’s gonna know your name (yeah)
And you’ll be on the walls of the hall of fame

Be a champion, be a champion, be a champion, be a champion
On the walls of the hall of fame

Be students
Be teachers
Be politicians
Be preachers
(Yeah)

Be believers
Be leaders
Be astronauts
Be champions
Be truth seekers

Be students
Be teachers
Be politicians
Be preachers

Be believers
Be leaders
Be astronauts
Be champions

Standing in the hall of fame (yeah, yeah, yeah)
And the world’s gonna know your name (yeah, yeah, yeah)
‘Cause you burn with the brightest flame (yeah, yeah, yeah)
And the world’s gonna know your name (yeah, yeah, yeah)
And you’ll be on the walls of the hall of fame

(Be a champion)
You could be the greatest
(Be a champion)
You can be the best
(Be a champion)
You can be the King Kong banging on your chest

(Be a champion)
You could beat the world
(Be a champion)
You could beat the war
(Be a champion)
You could talk to God, go banging on his door

(Be a champion)
You can throw your hands up
(Be a champion)
You can beat the clock (yeah)
(Be a champion)
You can move a mountain
(Be a champion)
You can break rocks

(Be a champion)
You can be a master
(Be a champion)
Don’t wait for luck
(Be a champion)
Dedicate yourself and you gonna find yourself
(Be a champion)

Standing in the hall of fame

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Resilience tune #3

At first Day 3’s song seemed a bit too random for today but as my teachers (annoyingly!) used to say – there’s a lesson in everything if you look for it!

Singin’ in the rain by Jamie Cullum

Not a cloud in sight today but this song has helped with the frustrations of being stuck in bed while my friends are having a BBQ at the park on this beautiful sunny day.

So many things, just like the weather, are totally outside of our control. What’s within our control is how we respond.

I hope you’re having a wonderful day filled with good things.

If not, I hope you’re able to make something good out of the day you’ve been given.

I’m laughing at clouds
So dark up above
The sun’s in my heart
And I’m ready for love

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Resilience tune #2

Well I did say I would post the first song that came up when I pressed ‘shuffle’ on my Resilience Playlist, so today’s tune is…

Tubthumping by Chumbawumba

(trigger warning – video contains lights, movement and beats)

I’m obviously not recommending this concoction as a homemade migraine remedy (though we’ve tried pretty much everything else so who knows, it might just be the answer!) but every so often it’s good to sing/shout the chorus loudly in the face of whatever life might throw at you:

I GET KNOCKED DOWN
BUT I GET UP AGAIN

YOU’RE NEVER GONNA KEEP ME DOWN

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Resilience tune #1

So tune number one is…

Paradise by Coldplay

Lying underneath the stormy skies
She said oh
I know the sun is set to rise

Find out more about my Resilience Playlist here

Hope you enjoy!

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