24 hours in Oxford

How does your home town make you feel? Whenever people tell me they’re going to Oxford for the weekend, I can’t help but wonder why. I mean, sure, it’s famous for its university buildings, for punting on the Thames, but… it’s just Oxford. It’s the place I grew up, full of tourists and devoid of decent shops, expensive and dull.

As you probably know, I returned to Oxfordshire when we left London earlier this year, so when a friend from Newcastle came to visit and said she wanted to explore the city, I put together the best 24 hour guided tour that I could come up with. And you know what? It turns out Oxford is pretty special.

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Oxford city is small and flat – which is a relief, because I’m less physical than most – so looking around it doesn’t take long. There are many museums to get lost in but the weather was absolutely glorious and neither of us fancied moseying around old buildings in the blazing heat, so instead we took to the university grounds.

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Christ Church College meadows are absolutely beautiful. They’re green and spacious and manicured to perfection, with impressive buildings imposing on the landscape. We walked out of the grounds and over Magdalen Bridge, watching the punters enjoy the midday sun. (Note – students, get yourselves a job punting for people who want to lie in the boats without the hard work.)

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Walking over the bridge and down the High Street made me realise how lucky I am to have grown up in Oxford, and also how embarrassing it is to have claimed Oxford as a dull city. Dull! I go to Prague and Amsterdam and Paris and Gdansk and wax lyrical about beautiful architecture and the joy of small cities to walk around and yet, here I am, overlooking all this on my doorstep.

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We had lunch on Broad Street surrounded by many more beautiful buildings – and about 200 students in their gowns, enjoying graduation day with families and friends. This is what I hated about growing up here but now, seeing the road swarming with black gowns – like a bat invasion, I felt pretty lucky. Lucky to see this hub of excitement, and even luckier not to be a part of it; there’s nothing better than people watching. (Second note – I worked damn hard to take photos without the student invasion in them, but now I kind of wish I’d captured the buzz.)

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This is one of my favourite buildings in Oxford; the Radcliffe Camera. A round library – what’s not to love.

Now you know I mentioned Oxford is small and I’m sore? Well, this little tour of the city’s most iconic buildings took us from morning until lunch, so we swanned off to the countryside and spent the afternoon in the grounds of Blenheim Palace.

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Blenheim Palace is a country house situated about half an hour from Oxford. The Duke of Marlborough lives there which, let’s be honest, seems a little over the top. I mean – who needs this much space? I barely know what to do with two spare rooms.

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I begrudge paying £24 per person to get in to grounds that I used to sneak in to for free when I was a kid. That is a lot of money to wander around a lake and look at a big house. But, come on, what a beautiful big house it is. Plus, there’s a mini train that takes you to a maze and a model village so well worth the £24 in my book.

(Check out my instagram for pictures of the model village and the Oxford snaps that my phone was responsible for.)

The first thing to do when the sun shines

They always say that when the sun shines in London, it’s one of the best places in the world. I don’t know who ‘they’ are, but I think they are the Londoners who find the city so miserable in the cold, grey, damp weather that by the time the sun shines, the contrast is – quite frankly – incredible.

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Not long ago, I was one of those people. On a sunny day we would rush home from work, only to remember that the tiny flat we lived in had no garden. We would then go to one of the three pubs in walking distance only to remember that their ‘pub garden’ referred to benches that sat alongside the the main road, perfectly placed to observe London traffic and breathe in those delightful fumes.

This was very much better than London in the rain, but it wasn’t exactly the dream way to bask in the summer sun.

Today, when the sun came out and – in true British style – we all complained about the heat, I decided to do the one thing you should do when you get that first blast of summer sun. Enjoy it.

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Our new country house backs on to the Oxford canal, and we’ve found a circular walk that is about two miles – the distance I can cope with before my shaking legs can’t take any more. The walk allows me to do one of my favourite things… take a nosy look inside all the narrow boats – and admire the excellent names. (“P45” and “Narrow Escape” are two of my favourites.)

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Is there anything that isn’t made better by bright blue skies? Any mood that isn’t lifted, or stress that isn’t calmed?

I really want to make the most of this sunshine. I know it won’t last, so whilst it does let’s make the most of it. If you can’t find me, I’ll be the one staring at house-boats.

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How to have a non-traditional wedding

I’m getting married in December. I’m getting married but there will be no white dress, no bridal party, no first dance, no giving away and no cutting of cake. Does that all sound a bit negative? If it does, it’s not supposed to.

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I always wanted to be married and when I fell in love with R, I knew it for sure. But as we moved in together, bought houses and planned our future, a wedding seemed less and less important. By the time we decided to get married, I was trying to work out how we could take a Friday off work, pop to a registry office then celebrate with pizza and beers without telling our loved ones.

But we couldn’t. My family would kill me – as would some of my friends. Plus, I have absolutely loved watching each of my friends get married in the last few years – welling up during vows, laughing during speeches and rocking the dance floor in to the early hours. Every single wedding I’ve been to has been incredible, so it seemed a bit mean to take that enjoyment away from our nearest and dearest.

But still the question remained: How could we get married and have a wedding without it being a “Wedding”?

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We started as we meant to go on. There was no proposal – I warned him many years ago I couldn’t cope with the cringe if he got down on one knee – so we decided to get married one Friday evening, whilst eating a takeaway curry and drinking wine and talking about life. I couldn’t have asked for anything more ‘us’.

We then spent the next few weeks planning everything. We chose a date, booked venues, tested and ordered food, we booked a photographer, I bought a dress online, tried it on in at home and asked for his opinion, and we made invitations together. At no point did we tell anyone.

We kept it a secret as long as we could. There was no Facebook announcement, there was no ‘engagement’ story, there was just us planning away in secret and it was more fun than I could have imagined. In the end we decided to tell people by sending out invitations and letting the postman/woman break the news. It was so brilliant receiving messages and calls from overexcited friends who had no idea until they saw the invite, and they all reacted in the best way possible. It reminded me that this was the excitement I wanted to share.

Since then, we’ve confidently ruled out every tradition going except for speeches and readings (because I adore speeches and we both love readings) and it was all going pretty well – until recently when I had a small freak-out that our non-traditional wedding will be no fun for anyone. I worried about our informal food, my lack of bouquet throwing and my non-white dress, fearing that people would wonder what we were playing at. It was all feeling a bit scary until we went back to basics and reminded ourselves that actually, whilst we hope everyone enjoys it, this is about us getting married. It’s not about spending £12k we don’t have on chair covers we don’t like and vol-au-vents we don’t want.

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Stylist has published a couple of interesting articles on modern marriage recently, this one on a new generation redefining marriage and this one by Me & Orla blogger on an un-wedding for the unconventional bride. Although I’d love to call all of this unconventional, I’m pretty sure it’s actually fairly run-of-the-mill. For me, a wedding should reflect the happy couple and whether that involves a big white dress and cathedral veil or a pair of jeans and a trilby is entirely up to them. I can’t be alone in that thought.

For us, we just want it to be simple and fun and a true reflection of the things we love. It doesn’t need to be the ‘best day ever’. In fact, I’ve never quite understood why we would put that much pressure on ourselves. I just want three things from it: I want us to be married, I want to be well, and I want us to enjoy spending time with people who love us. If all that happens, I’ll call it a success.

Images in the post are from London Bride (www.london-bride.com)

I speak for pain campaign

I speak for pain. I do. The whole purpose of this blog (aside from the occasional general musings and rantings on life) is to give a voice to chronic pain. It began three years ago because I was frustrated and needed to find a less physical outlet for my energy and now, instead of using the blog to find a life less physical, the blog has become that life.

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But not everyone wants to put their every pain related thought in writing, so I speak for my pain and I speak for others. I speak, shout, cry and rant about pain, and I like to think that most of the time, I do an okay job of it.

The thing I’m not very good at is using that voice to challenge the medical system we seem to be stuck in. I don’t challenge my GP who dismisses me with antidepressants, I don’t challenge the gender stereotypes that leave female chronic pain patients feeling helpless and ignored, and I don’t challenge the lack of medical research in this area. So that’s what I’m going to change; I’m going to use this loud mouth to be a bit more effective than just jabbering away on the internet.

You can imagine my delight when The National Fibromyalgia and Chronic Pain Association announced the new campaign – #ISpeakForPain. It aims to set a national pain strategy in the US by challenging policy and showcasing the millions of people who are effected by chronic pain every day. The campaign introduction says:“People making decisions that significantly affect your quality of life (federal officials, legislators and policy makers) need to hear from you. Joining the #ISpeakForPain [campain] and telling your story can affect policy decisions and new areas of research.”

Chronic pain patients and their families can participate by uploading photos to #ISpeakForPain on Twitter and Facebook. So come on, cameras out. Stupid faces, heart-felt signs or your serious fight face (yes, that’s what I’ve gone for), it’s selfie time. This is me. I speak for pain.

American readers, here’s looking at you to take it one step further. You can browse the website to write a letter to your Member of Congress – with your own content, or using a prepared template – and you can sign this White House petition on 13 July.

And whilst I’m on the subject, I want to say that whilst I speak for pain, you’re the ones listening. So thank you.

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The Fay Farm serenity lotion – and a discount for readers

It’s not very often I write product reviews. I’m bad at sticking to new habits long enough to determine whether or not something has worked, and fibromyalgia is so unpredictable that if I feel for a better day I can’t work out if it’s the new product, or my diet that day, or the weather.

Product review of Fay Farm Serenity Lotion for fibromyalgia chronic pain and anxiety

I am part of the Chronic Illness Bloggers network and when the network offered me the chance to review The Fay Farm Serenity Lotion I figured, why not. I like lotion, I like feeling serene, this shouldn’t be too difficult.

I’d never heard of The Fay Farm before so, naturally, I did some digging on the company before accepting the opportunity to review the lotion. In these days of corporate greed and political cynicism, company ethos is getting more and more important to me. I was delighted (and ever so slightly envious) to read that The Fay Farm was set up by a couple who wanted out of the office cubicle life and into the rural farming life, with more time to spend with their seven children and the natural landscape. These days, Stacy and Michael are making natural body care products that treat psoriasis, eczema, itching skin, sore muscles, rheumatoid arthritis, cluster headaches and migraines.

You’ve got to admit that, round about now, this is all sounding pretty good.

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The serenity lotion is aimed to relieve anxiety and stress and to do this it includes hemp oil, grape seed oil, apricot kernel oil, jojoba oil, chamomile, green tea oats… and lots of other things that are all healthy and good for you. The ‘CBD’ version of the lotion also includes 200mg of cannabidiol, which has been known to soothe nerve pain as well.

For those who don’t already know the ins and outs and cannabidiol (ie. me) I did a little research. Cannabidiol (CBD) is found in cannabis but is not the part of the compound that gets you high – that’s THC. CBD is being used in medical trials across the world and  has so far shown positive results when used as an anti-inflammatory amongst other things.

Now, I’m a cynic. What’s more, I’m an exhausted cynic. I do not approach new products with a spring in my step and my arms open wide; more often than not I am likely to try it for a couple of days, notice no difference and carry on living my life of pain whilst the product gathers dust in my bathroom.

But for three weeks, the serenity lotion has stayed on my bedside table. For three weeks I have used it every night, rubbing it as instructed on my neck, my stomach and the soles of my feet. The lotion is light; it doesn’t leave an oily residue and yet it’s thin enough to spread without feeling like you’ve had a twenty minute workout trying to rub it in.

Not only have I used it every night, but  I’ve forced R to use it too. He is a bit more stressed than I am at the moment and he’s a lot more cynical so I figured, if it works on him then it’s definitely worth the money. And so far, he hasn’t told me to bugger off with my hocus pocus lotion – which is normally the response.

Has it worked? Well, it’s tough to say. I’m not sure it’s had a lasting impact on pain or stress, but it has certainly had an instant calming effect in the moments when used, and that is exactly what’s needed. At night, when it feels like the world has stopped spinning and you’re left with nothing but your thoughts, turning to the nightstand and knowing there’s something soothing to help you calm down is comforting. When the silence gives room for your thoughts to speak more clearly, the serenity lotion helps to muffle those thoughts.

But there’s one other interesting change I’ve noticed. I suffer from nightmares – most nights I’ll have at least one, sometimes more. Always scary enough to remember, often scary enough to wake me. I recently reduced my pain medication in case that’s what was causing the hallucinations and overactive brain activity, but at the same time I started using the serenity lotion. I don’t know which one has worked, maybe it’s a bit of both, but it’s safe to say that I can’t remember a nightmare from the last two weeks so, if they’re happening, they’re certainly not as terrifying as they were.

Overall, I would definitely recommend The Fay Farm lotion. I can’t say my test is particularly scientific, but I’ve spent the last few weeks feeling comforted by it and welcoming the smell and relaxation I feel when I use it. I think it’s fair to say that, based on how this test has gone,  my new recipe for relaxation is serenity lotion and pancakes with maple syrup. Perfect.

If you fancy trying it, you can benefit from 10% off by entering “LESSPHYSICAL” at the checkout.

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NOTE: The Fay Farm serenity lotion was gifted to me free of charge in exchange for an honest, unbiased review. All views in this post are my own and I am in no way influenced by the company.

What I miss about London

Since I left the capital city in February for life in the countryside, I’ve barely looked back. Life is quieter, I am calmer, and everything just seems more chilled.

But a couple of weekends ago we went back to London to see old friends, visit old pubs and see old sites and I realised… I miss it a little bit.

I definitely don’t miss the crowds or the teeny flat, but I miss the convenience and the variety, the diversity and the culture. But mainly, I miss our friends.

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A couple of months ago our friends gave birth to a beautiful baby girl. They’re the first in our large friendship group to have a sprog and it’s so incredibly weird. When I’m with them it seems hard to imagine a time when she wasn’t around, and even though I know their new world is full of natural early parenting angst, they have adjusted to parenthood in ways I couldn’t have imagined. Although I am in no way the parenting expert, they seem to be handling it like absolute pros and everything just seems so…normal. It’s amazing to watch and she is amazing to cuddle, and I miss her.

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Seeing their little tot change online makes me realise how much you miss when you’re far away from your friends. We have the same situation with friends and family in the north of England and in America too; children grow and change so quickly that photos alone make you realise how much you’re missing and how long it’s been since you last saw them.

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We arrived in London on Friday night; the streets were crowded, the tube was sweaty and I wondered how on earth I lived here for as long as I did. But, even amid the pain of London crowds, it felt nice to be back. We went to the pub and grabbed a seat in the ‘garden’ – only in London do wet benches along the side of a busy main road constitute a garden, and only in London does a man come along with a broken bike, balance it on his head and ask you for money. Which I gave him, by the way, because this is impressive.

London pubs are not like country pubs, and though many would disagree, I’d go for a good old London hipster pub any day of the week. They’re loud and busy so you can always hide away in public, they’ve got a diverse group of customers and I feel totally comfortable in them. Whether it’s the quirky furniture, the small yet adventurous menu or the weird attention to detail in the toilets, you feel like you’ve entered a new little world.

Country pubs – or rather, my country pub – by contrast needs you to book a week in advance to get a table, the menu’s as long as the bible and the bar staff look at you in a slightly odd way if they don’t know you. You’re on show. Sure, the roaring fire, the railway memorabilia and the fact it is next door to my house mean I’ll keep on going back, but I miss those London pubs a whole lot.

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The diversity and culture in London never fails to disappoint. I am always surprised by something I see in London, and I am always so impressed and proud of this incredible city of multiculturalism. If there is one thing London is brilliant at, it’s enabling inclusivity and anonymity both at the same time.

I missed the London buzz so much that this week, when a meeting in London finished early, I took a trip up to The Tate Modern and viewed London from the tenth floor. The view offers such a striking skyline that on a grey, dull day of drizzle it still felt so imposing, so atmospheric.

And then the next day, everything around us came crashing down as the country voted to leave the European Union. As a firm remain voter, I was devastated as the results came in and I struggled to identify with the country I claimed to love so much. But one look at London and there it was. It’s safe, and I trust my fellow Londoners to protect it.

It’s safe to say that for better or worse, the things I love about the countryside far outweigh the things I miss about London. But they’re all very sensible, fairly selfish things. I love the quiet, the calm, the clean air, the greenery, the flowers, the space and the cost of living. They’re things I need for my own sanity and self-preservation, and things we need and love as a couple. But I miss brunch (yes, I am *that* girl) and I miss spontaneous nights in the pub, and I miss the people I’d got used to seeing whenever I needed girl time.

Now… how to get those people out to the countryside to set up our own diverse, hipster pub – one that serves brunch, obviously.

The start of a fibro flare

Roll up, roll up, it’s that time again! Time for the coping strategies and positive posts to sit quietly at the back whilst the fibro flare takes centre stage. Ladies and gents, let’s not get cocky now; it’s time for the flare to put me in my place. I know it’s coming, I know how it feels, and yet it surprises me every time. And every time it knocks the wind right out of my spoonie sails.

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Last week I got back from Portugal feeling pretty proud of myself for surviving my first music festival of the year. It was heavy going and I expected some backlash, but I was feeling fairly optimistic – I didn’t push myself too much and I was the most sensible I’ve ever been, so a small part of me that thought I might have got away with it.

Sadly, with pain like this, I can only assume the fibro flare saw me grooving to Good Vibrations and has come to do some damage to my arrogant, thoughtless, dancing self.

The festival, combined with a seven hour flight delay at the airport, meant physical strain and interrupted sleep. The first week back I felt truly exhausted, like I couldn’t catch up on the good night’s sleep I should have had – missed to sitting upright playing cards and drinking overpriced drinks in the departure lounge. Each night my bed time got earlier, but I was yawning through meetings and sleeping on trains and felt like my body was moving on the outside whilst I hid, nervously inside the shell.

This week the exhaustion has continued but with it comes the pain. Today, a pain so severe that I can do nothing but politely acknowledge the arrival of the flare, tip-toe around gently and whisper so as not to aggravate it further, hoping that it will leave me alone by the end of the week.

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Image via Aqua Deer

 

My muscles feel like I went to body pump last night, and then squeezed in a spinning class before work this morning. I’ve never worked them so hard, yet I didn’t do a thing.

My knee joints feel so painful I think they’re about to come apart, like a raggedy old doll who’s been pulled in too many directions too many times.

My fingers hurt with every touch of the keyboard, like I broke them months ago and the bones haven’t recovered.

I’m so tired I could fall asleep in the middle of my dinner, like a newborn baby has woken me every hour of the night and now I can’t focus on a single thought without my heavy eyelids closing.

Luckily, I am nothing if not experienced. I know what’s ahead of me and I know how to deal with it. Remember the cycle I posted a couple of months ago? I’ve got a few more days of pain before I can feel sorry for myself, then get angry, and then I can go back to feeling strong and cocky all over again.

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The moment I realised the importance of politics

I’ve never written about politics before. It’s never seemed completely appropriate for this blog and, as eloquent political speakers in the world go, I am definitely not one of them.

But today, the news of Jo Cox, Labour MP, being murdered after a constituency meeting in a West Yorkshire library has brought me to tears… and brought me to blogging.

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Image via The Guardian

I didn’t know Jo Cox. I’ve never seen her speak and didn’t know of her professional or political history until today. But when my Guardian app popped up with news of her shooting, I felt utter despair.

In the last few weeks I have been consumed by the hatred in this world. I have watched Donald Trump continue time after time to be a sexist, racist, misogynist; I have watched the horrific events in Orlando take place, I have seen unbelievable lies spread by the UK’s ‘Brexit’ campaign to leave the EU, and I have read more articles than I can count on the horrific story of Stanford rapist Brock Turner and the judge’s appalling justification for his six months sentence.

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And  with all of this in my head, in the world, I felt unable to cope with the news that one of our MP’s  could be shot and stabbed to death on the streets of Yorkshre in broad daylight. A woman who once said;

“I never really grew up being political or Labour. It kind of came at Cambridge where it was just a realisation that where you were born mattered, that how you spoke mattered … who you knew mattered. I didn’t really speak right or knew the right people. I spent the summers packing toothpaste at a factory working where my dad worked and everyone else had gone on a gap year. To be honest my experience at Cambridge really knocked me for about five years.”

The Guardian article went on to say that “Cox [became] an aid worker in developing countries, and became Oxfam’s head of global policy. Max Lawson, Oxfam’s head of policy, who previously worked for Cox said: “Jo is a brilliant committed activist for social justice with boundless energy and kindness who made a huge contribution at Oxfam.”

I haven’t always been in to politics. My grandparents were Conservative voters through and through, and by stark contrasts my parents were Liberal Democrat supporters. Politics were never discussed in our house; I can’t remember a time growing up when the decisions we were making were related to our government or my parents political viewpoint and so, when I turned 18 and had the right to a vote that many women before me had fought to achieve, it just didn’t matter to me.

When I got together with R, I felt slightly (very) out of my depth. His family start and end most dinner times with conversations related to politics (food is the only topic that comes in the middle) and challenging each other’s political views was not only accepted, it was expected. I didn’t even know what my political views were, never mind how to articulate them.

But that said, I cared deeply about societal issues form a young age, I just didn’t relate this interest to any political agenda. In my first sales job, I felt a bit uncomfortable that I was selling products to the pharmaceutical industry – and I couldn’t understand why it was acceptable for the medical community to be influenced by big businesses. When I started working for a Further Education College, I regularly got into debates about the need to promote apprenticeships and vocational education to young people of all abilities and not just ‘the poor kids who were crap at school’. I argued about fair access to quality education, and the importance of practical skills and the service industry – and the need to respect and admire these skills instead of comparing them to Economics degrees from Oxford University.

It was only when I left education and moved in to Social Housing that I realised the very direct link between my views and the political parties. I designed employability programmes for the long-term unemployed, worked with the DWP’s Work Programme and became all too aware of the horrors facing the people living in our benefit system. Horrors that could happen to any one of us. I started working on programmes that helped people survive the Bedroom Tax, I worked to promote careers in construction and engineering to young women, and I joined the diversity network when I became all too uncomfortable that our board of executive directors included five white men in their fifties, and just one woman.

Finally, my career took me to social responsibility. I feel like the job I have found is the job I was always meant to have. I manage the impact my company has on society, and work to ensure our strategy and operations leave the country in a better place than we found it. I spend my day talking about the need to look beyond the balance sheet and see the value in culture, in employment, in health and wellbeing, and in positive societal change.

And so today, when Jo Cox was shot by a man allegedly shouting ‘Britain First’ in the week before our country votes on whether or not to stay in Europe, I realised just how political I have become.

I don’t understand every news article, every policy, every debate, but I understand that Tory policies do not prioritise and protect the people I believe need our support and protection. Thanks to the Tory government and the right-wing press, I feel our working class are demonised at every opportunity, the disabled and long-term sick are left at the bottom of a very big pile, food bank usage is at an all time high, and our public services are breaking and under the threat of privatisation.

I understand that my job exists because there is a need for us as a society to take responsibility to support local communities and promote equality across Britain. I understand that without a group of people fighting day in, day out for the country we want to live in, I am scared of what it will eventually become.

Dramatic? Maybe. I thought about this earlier in the week when @meandorla and I were on Twitter feeling sad about the world.

As I thought about all the horrible things that have happened in the world before now – world wars, apartheid, the holocaust – I figured that surely things are getting better. Surely. But somehow, right now, it feels like it’s all about to get worse.

With all of these thoughts whirling around my head, I got off the train, got into my car at the station car park, and sobbed as I listened to Radio 4 break the news of the murder of Jo Cox. Whatever comes next, I just hope it’s positive.

Surviving festival season with fibromyalgia

It’s 1:30am and I’m sitting in a damp field. Around me are thousands of people, jumping and dancing to the music I can hear loudly from a far-away stage. From my spot on the ground I can see nothing through the darkness but a sea of skinny jeans, every where I look. I watch each leg intently, prepared to protect myself when they walk towards me, stumbling and tumbling in the darkness. I don’t know the band on stage. I mean, I’ve heard them before but in this moment, in this disconnected moment where everyone is so alive, I don’t know them. I’m sore, I’m cold and I’m wondering why I keep coming to music festivals.

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Fast forward to the next night. It’s 8pm and the sun is setting on a truly glorious day in Portugal, which I have mainly spent lying in the sunshine and eating bread and cheese. I’m back in the same field with the same people who have come back for more of the same sounds except that this time, I am one of them. My hips are swaying, I have a 1960’s swing in my step and Brian Wilson is playing the hits of the Beach Boys. Over-excited and bursting with joy I make a space for myself in the crowd and, sangria in one hand and camera phone in the other, I dance for an hour and take snapshots of this once-in-a-lifetime moment. There are so many incredible hits and there is so much love that I didn’t realise I had for Pet Sounds. This moment is amazing. This moment where I am stood, in a field, dancing and singing my heart out.

I quickly have a word with myself. Remember this feeling, Sarah. Remember how good it can feel.

I dance into the early hours. Sure, there is more sitting on the ground in a sea of skinny jeans because let’s face it, I’m not superwoman. But as people in our group start to leave I shout to R beaming, “I DON’T WANT TO GO! I FEEL WELL! I *NEVER* FEEL WELL!” And so we stay, and I get to enjoy this rare moment of health. It’s like an out of body experience, I feel light and it’s wonderful.

We sit on one of the benches and people-watch for a while, drinking sangria and eating crepes at 2am. I try to remember the last time I didn’t feel any pain in any part of my body. I can’t, but it doesn’t really matter. What matters is that it’s happening now and, on reflection, I really should have taken a damn photo.

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On my third day at the festival there was more dancing, albeit a significantly smaller amount. There were more ecstatic moments and there were more moments of sitting on the ground hoping not to be stepped on. There was a bit of disappointment as I had to sit through songs I love, there was a lot of laughter and delicious food, and there was some sitting on a hill browsing Facebook whilst other people partied to a band I didn’t care about.

These are my festival moments. They’re the same highs and lows I remember from last year and the year before. And now, after three years of practice, I finally feel like I’ve got this festival survival business down. Here are my top three tips.

#1: The smaller the better 

Big festivals are great; there’s an abundance of choice and something to suit your every mood. But ultimately, they’re an overwhelming display of things just out of reach. Pick a small festival where you can stand in the centre and see the stages, the food and the toilets. If it’s in sight, it’s in reach. You can do it.

#2: Know yourself and trust yourself

You know you better than anyone, so trust yourself and be bold. If everyone is going to Glastonbury and you know you can’t do it, don’t do it. If camping in the rain is too difficult (or, quite frankly, unappealing) then go to a city festival in the sunshine. Wear layers, leave early, drink less, drink more, lie at the back, dance at the front, wheel your way to viewing platforms, throw your walking stick in the air… handle it however you need to handle it and do whatever you need to enjoy it. Know yourself, trust yourself and take care of yourself.

#3: It can’t be perfect 

It can’t be perfect, and it won’t be. There will be moments where you sit on the ground at 1am as your friends dance next to you and drunk people fall over you. Those are not the highlights. The highlights are swaying in the sunshine to songs that warm your heart and, ultimately, warm your bones, joints and muscles too. Those moments give you energy. They’re the moments that make you feel well and, as chronic pain patients know, that feeling doesn’t come around very often.

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Preparing for festivals when you have fibromyalgia

I don’t do festival prep very well. In fact, come to think of it, I’m not sure I do festivals all that well. I’ve blogged a couple of times about surviving festivals with a chronic illness – both at home and abroad – but every time I prepare to go to a four day music festival, I get the fear. Fear that I won’t survive, fear that I won’t have fun, fear that I’ve spent money on something that will have a lasting effect on my pain for the next few weeks – and not in a good way.

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But I keep doing it, and this year I’m doing two – one back in Portugal with a small group of four and one in the British countryside with fourteen girls. With a fairly intense summer ahead, I’ve decided to think about festival prep and aftercare and, as with all good things in my life, I’m going in with a structured plan.

It starts with the clothes

Shallow as it may sound, fashion choices are an essential part of festival survival. Too few clothes and the cold chill makes me sore, too many and the heavy bags have the same effect. Quite frankly it’s a logistical nightmare.

And, whilst I have no desire to look like I’m 19 and at Coachella, I would like to look half decent. I want to be healthy, comfortable and gorgeous – is that too much to ask? Steering clear of short shorts and flower crowns, I will mainly be wearing skinny jeans, striped tops and a chunky knits – with thermals in my bag for after sunset. Warm, light and… well, warm and light. That’ll have to do.

Be okay with being alone 

We all want to come away from festivals with group photos and mosh-pit memories, but survival is the order of the day and sometimes that means stepping away from the action – even if it means being alone. Moving from stage to stage and standing all night isn’t practical for fibro festival folk, so sitting at the back or lying in the sun needs to be an acceptable pastime – at least for some of the day.

People-watching is an excellent and fascinating way to pass the time, and this year I will also be taking a book. Call me boring if you will, but I love to have music in the background whilst I’m reading or writing and, whilst it may not be the way to have a hardcore party, it’s still better than being at work.

Chill, and enjoy it 

If keeping yourself as pain free and calm as physically possible is your number one aim, then I’d probably skip a music festival. It’s never the most relaxing experience but it’s not meant to be. Even for the most physically able it’s a demanding, draining weekend of late nights, too much booze and too much dancing. So embrace it for what it is, do what you can and above all else, enjoy it.

… Wish me luck! I’ll report back.