N:rem mattress for chronic pain

Aaaah, sleep. Sweet sweet sleep. That wonderful place of rest and calm where we the world stops spinning and we dream of bunnies and fairies. No? Me neither. Sleep for fibromyalgia sufferers is so bittersweet; I’m so exhausted and sore that I can’t wait to climb in to bed, only to find I’m so sore and uncomfortable that I can’t get to sleep. And when the meds kick in and I finally get there, sleeping through the night is often interrupted by nightmares and hot sweats. When I wake in the morning I have such intense pain that I can’t wait to get up bbt as stressful as all that sounds, as soon as I’m awake I just want to get back to sleep.

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

When I was asked to review the N:rem mattress – or “sleep system” – I jumped at the chance. Who doesn’t want an opportunity to test a bed that claims to be “ideal for chronic pain sufferers [providing] comfort for painful areas and support where needed.”

Some quick background for those who haven’t heard of N:rem: they provide mattresses that come with individual foam panels inside, which can be put in any order to suit you and your pain. The idea is that you can arrange the panels in the comfort of your own home, with each side personally tailored so that you and your partner can have individual set-ups. The mattresses also come with built-in temperature control so, at this point, it’s all sounding pretty dreamy.

What I loved about N:rem, right from the beginning, is that they get it. “Everybody’s pain is different and in different places which is why your current mattress doesn’t provide you with the comfort you need and long for.” It made perfect sense.

Here are some of the combinations they suggest for common chronic pain sufferers.

 

 

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So eight weeks on, is it a mattress made in heaven? Well, yes and no…

The idea is genius. You swap your panels around depending on your pain and respond to the needs of your body. Simple. Except that if, like me, changing the duvet cover is so much effort that it makes you feel like you’ve just climbed Everest, you can imagine the nightmare that is changing foam panels inside a mattress. Bedding gets stripped off, mattress comes off, panels get moved, and so on…

I ended up sitting back and watching Robin as he climbed over bedding, moved panels around and cursed the day I agreed to “this nonsense”. I assume it’s a lot easier if you have a bedroom with floor space but in our small cottage, it was a bit of a faff. Or, a lot of a faff. And that’s when done by an able-bodied person. All I’m saying is, I recommend you get some help unless you have a nice spacious bedroom like this one.

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Image via N:rem

A week in to the sleep experiment and I was liking it. I ached less and I sweat less and it seemed to be doing the job. Sadly, however, the mattress was too big for our bed (no fault of N:rem, our bed is an annoying, unusual, awkward size) and so the mattress would tip if I slept too close to the edge. Not ideal. Plus, Robin found it a bit weird. As someone who doesn’t suffer from chronic pain, he preferred our simple, old, boring mattress. There’s no accounting for taste.

A couple of weeks in to my sleep experiment I went on a two week holiday and then came back to a three week flare up. It’s always pretty tricky to review chronic pain products because if our symptoms start to improve we can never know for sure whether it’s the product we’re using or the food we’re eating or the activities we’re doing – or not doing. And if a flare lasts longer than usual, is it because of the activities we’re doing or the food we’re eating, or is it that new mattress we’re sleeping on? Who knows.

In the last few weeks, we’ve moved the mattress – and ourselves – in to the spare room. The mattress fits the bed properly which means I can test it better. On the nights I don’t sleep well, I wonder if it’s just the newness of a different room or the fact we can hear the railway line from that side of the house, or again, is it that new mattress I’m sleeping on?

Well I’ll tell you one thing for sure; I sweat less and, most importantly, I wake in a lot less pain. I haven’t noticed a big difference in my sleep during the night but there are many other factors contributing to that, so I’m not sure N:rem can be held responsible. There’s definitely much less pain in my lower back when I wake, I don’t feel the need to get out and stretch, and I don’t want to go back to my old mattress. I think I may be well on my way to finding the thing we can search years for: a good night’s sleep.

Check out N:rem’s mattresses and more importantly, their excellent payment plans and 100 night trials. Just be prepared for some faffing with foam and potentially, the need to rearrange your furniture so you can sleep in your spare room for good.

Broken pieces

This week a friend came over, saw our brightly coloured cube keyring hanging from our back door key, and decided to take it apart. When he couldn’t put it back together, he left the pieces on our kitchen table and we’ve spent the last 48 hours trying to put this Christmas cracker toy back together, with no success.

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This morning, two weeks in to one of the worst flare ups I’ve ever had, I sat at the kitchen table staring at the six pieces of the puzzle. What a metaphor for my current physical state! Pulled apart, it feels like it should be so simple to put the pieces together and rebuild this solid cube but I feel like I’ve tried every possible option and still the pieces sit before me, useless and redundant.

I pushed the pieces to one side, put the keyring-less key back in the door and gave up. As Robin started to play with the pieces I said, “don’t bother – it’s broken.” Refusing to be beaten after the hours already spent trying to rebuild the cube, he took to Youtube to find a video that would show him how to put Humpty back together again.

Five minutes later and satisfied, natural order was restored and the cube now sits back on the keyring hanging from our door. A quick Google has ended days of frustration. If only a fibromyalgia was as easy to fix…

The unpredictability of fibromyalgia

In the last 38 days I have been to two hen parties and a wedding. All three events were wonderful, but all were reminders that if you suffer from fibromyalgia you can never predict your pain.

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In early August, one of my close friends invited 11 girls to spend a wonderful weekend at Wilderness Festival. It was a chance for the girls to get together, catch up, party hard and celebrate the girl we love and her upcoming marriage to her boyfriend of 14 years. It was an amazing hen party, but it was always going to be hard. Three days in a field camping and partying was something I knew I’d struggle with which is why, like the mature adult that I am, I decided not to camp and instead went home each evening.

I did everything right. Everything. I participated in every hen do activity but behind the scenes I was eating properly, drinking plenty of water, taking tablets, resting my legs, packing lightly. I did everything right damnit.

Which is why, when I left early on the first night, legs shaking and vomiting in the bushes, I was so frustrated. I did everything right.

After a good night’s sleep in my own bed and an incredible boyfriend who cleaned the sick of my shoes whilst I slept (that’s love, right?) I went back for day two. This time I was even stricter with myself, and this time the vomiting was even worse. I eventually made it home, the pain in my head so bad I was convinced I was having an aneurysm and the pain in my legs so bad I wasn’t sure how I was still standing. Needless to say, I learnt my lesson and didn’t go back for day three.

I tried so hard to be okay, but fibromyalgia really bit me in the arse that weekend. I was so prepared for it and had such an amazing time during the hours of good health, yet the end of every day was an utter disaster and it ended up being one of the worst attacks I’ve had in some time.

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The following weekend was hen do number two and this time, it was mine. I actually refused to call it a hen do but when a group of close friends suggested a chilled out girls day with no pressure and no stress, I couldn’t say no.

Obviously, me being me, I then proceeded to plan a day of activities starting with brunch at 10am followed by cocktails on a rooftop bar, afternoon tea by the river, painting pottery, prosecco in the park, pub drinks, pizza and an indie club night. How heavenly is that? It’s all my favourite things squashed in to 24 hours!

Once again, I prepared. I planned the day so I could control each part of it, and I thought about my health at every step of the way. This time, it worked. I had one of the best days I’ve had in a very long time. In fact, I was still going strong at 2am, and though I was sat on a sweaty club floor doing my usual style of sit-down-dancing, I could have stayed longer if it wasn’t for the fact we were acutely aware that at 31 years old, we were almost twice the age of everyone else on the dance floor. Oops.

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The next day, I felt good. Achy, but so good. Why was it so different to the week before? Was it the comfort of being in control that meant I was mentally more prepared? Was it the fibro Gods being nice to me for one day, knowing that I needed a break? Was it luck? Was it something I ate or didn’t eat, did or didn’t do? Who knows. This condition shocks and surprises me day after day, and continues to be as unpredictable as it was seven years ago when I was first diagnosed.

To top off a fairly hectic month, last week was my friend’s wedding. In Tuscany no less! Once again, I prepared like hell. I took every step to manage the pain and avoid all my triggers. At 9pm the pain in my hips was so unbelievable that I sneaked away from the dinner table and went up to my room – so thankful that we were staying at the reception venue. I lay down for an hour, read my book and wondered how I would get back up again.

But I did get back up again, I went downstairs and somehow – don’t ask me how – I partied until 5am. FIVE A.M. How? God knows, but I loved every single minute of it. Is it adrenaline that kicks in and keeps us going? Is it strategic, tactical breaks that help us go the distance? I like to think it’s my body knowing that some occasions are just really bloody important and it knows it just has to power on through. If that’s the case, and let’s hope it is, I’ll be pain free for my own wedding – right?

Homemade blackberry vodka – part one

Before you can make homemade blackberry vodka, you have to pick a lot of blackberries. This year we’re planning to make about 5 litres of the stuff for our wedding in December, so many an evening is spent walking along the canal, searching for brambles. It’s really quite idyllic, and the fact there’s vodka at the end of it is nothing short of an added bonus.

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You would think I might have tired of this tiny stretch of canal by my house, but I really haven’t. In the summer months the boat yard has been busier than usual, but it still seems so calm and peaceful. Maybe that’s because I’m still comparing it to our last house on the south circular in South East London. The house boats have moored and I love nothing more than wandering along the narrow path, picking my boat of choice.

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Still, this wasn’t about picking boats. We were picking blackberries. Big, ripe, juicy blackberries. Last year we made this sloe gin and it was amazing, so I’m hoping this year’s vodka will be just as good. Fingers crossed anyway – we plan on serving it to 70 people.

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Living with chronic pain means that country walks don’t happen as often as I’d like. In fact, the chance that I’ll get a perfect summer evening on the same day that I feel healthy is fairly unlikely so days like today have to be embraced. Embraced, documented with multiple photographs, and blogged about. Because isn’t this what we’re all striving for? Those moments of good health that you just want to box up and pack away, ready to re-live when you’re short of spoons.

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Stratford upon Avon – tourist hell?

Stratford upon Avon. The birthplace of Shakespeare, home of the Royal Shakespeare Company, and beautifully situated along the River Avon. What’s not to love?

Well, let’s add ten hundred million gazillion tourists to that scene and suddenly the market town goes from idyllic to I-don’t-know-why-I-came-here.

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This week we had the joy that is bank holiday Monday in the UK; the day when office workers get to lie in and bask in the glory of a three-day weekend. (We often forget that this day is just like any other for the millions of shift workers in the country and it’s probably worse than any other for those in the hospitality sector. Sorry folks.)

Usually, for me, bank holiday weekend involves sitting in traffic as we try and squeeze as much as possible in to the long weekend. We plan ahead, we book cottages, visit friends, book restaurants… we travel. This bank holiday weekend, we did nothing. Nothing.

Or, almost nothing.

Saturday I spent all day in my pyjamas. I ate quesadillas and drank champagne for lunch (see insta for evidence), spent the day wedding planning with my most favourite man, and we ate curry for dinner. On Sunday I did more nothing; there’s a good chance I ate another quesadillas and then ate a steak dinner whilst binge-watching Braindead (an Amazon Prime series which is flippin’ brilliant) before having an early night.

So for some reason, I thought we should ruin that sense of calm by going to one of the most touristy towns in England.

After sitting in traffic, enduring slow service during an expensive pub lunch and listening to more steel drum music than I ever need to hear as I walked through the weirdest street market I’ve ever seen, I started to wonder why I’d broken my own rule and insisted on doing “something” this bank holiday.

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Feeling a little disappointed by Statford upon Avon, I was pleasantly surprised by this excellent hare. And also the best vanilla ice cream I’ve ever had. Then, shortly after these two highlights, we found one more. A short walk to the river (which we pretty much directly next to, but it took ten minutes to get through the hundreds of thousands of people also trying to get to the river) and we got ourselves a row boat!

Hoorah! Peace, quiet, and water. If there are row boats to be found, R and I will find them.

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Normally when we row boats, he rows and I sit back and look at the view. (What? I have chronic pain okay?!) But today, I had to steer. Now don’t be fooled; don’t think this is a token job to keep the kids busy. It requires focus, forward-planning and, most importantly, hands that don’t break from excessive rope burn. I could share a picture of me smiling and looking super relaxed, but I think this picture more accurately shows the effort I went to steering the boat. That’s right guys, I worked hard today. Totally deserved that ice cream.

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An hour on the river was totally worth the two hours on the road and two hours in the crowds. Really, it was. Because on the river we get to daydream about living in a house with a river at the bottom of a garden, owning a row boat and, ideally, a cat who can row us upstream.

Paint pottery and chill

One of the things I’ve most enjoyed about writing this blog has been the chance to recommend fibro-friendly activities; the things that chronic pain patients can do alone or with friends as a way of relaxing and having fun.

Something’s gone awry though… These days I seem to be doing too much, doing too little, or just sitting on my arse and reflecting on life as I know it. Remember the old days when I was falling in love with bingo, trying out art therapy books and making teapots? It’s time for more of that.

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This weekend I went and did something that on the scale of zero to cool is definitely not a high scorer, but it totally ticked all the enjoyment boxes. I got some of my favourite girl-friends together and we went pottery painting.

Have you tried this? If not you should definitely check it out. Unique Creations, and the many pottery cafes like it, provide a wide range of cups, plates, jugs, piggy banks and ornaments for you to choose from. They’re plain white and waiting for you to ruin or improve, depending on the level of your artistic skill.

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I could have split my friends quite easily in to two camps: those that found the exercise therapeutic and relaxing, and those that found it stressful and overwhelming. I was firmly in the second camp, and had to repeatedly remind myself I was there for the fun – not to try and win the Turner Prize. As I stood in front of the numerous items waiting for me and my paintbrush, I only became more and more overwhelmed. I stared at all the amazing creations on the wall as our host explained the numerous techniques to add colour, patterns, textures and decoration to the items we had selected. It seemed impossible.

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Thankfully, as time went on, it got easier. It became more relaxing and more enjoyable, and by the end of the 2 hour session I was beginning to wish I could stay longer and paint more. In fact, I am currently considering taking this up as a new therapeutic hobby.

When you develop a chronic illness or have a baby or experience something that completely changes your social life, I firmly believe in the importance of finding new things to do and new ways to have fun. Change isn’t always a bad thing. Pottery painting, bingo and art therapy aren’t for everyone but they’re three things I have absolutely loved doing since I became unwell (even though I’m crap at them) and now I just want to make sure I keep doing them.

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Aren’t we a creative bunch? Check out Unique Creations in Oxford if you’re looking for a relaxed atmosphere, a good teacher and a place where you can bring nine bottles of Prosecco in to a room for 13 people with no judgement whatsoever. Then sit back and watch as you create masterpiece after masterpiece – or mess after mess. Hurrah!

An open letter to my friends: how do you see me now?

Today I read this article on the ‘Queen of Constance’ blog – a popular blog written by an outspoken mum of four kids, with posts that are consistently being shared by my Facebook friends. Yesterday Constance handed over the reigns to her friend Penny Shipway, who wrote a letter to those affected by their friend’s chronic pain. She says,

Those days where every bill has come at once; your son won’t stop wetting his bed; you’re still waking six times to an almost two-year-old; and the house looks like worse than a burglar ransacking.

But you have chronic pain.

And you actually do have all those things but with a head that feels like it’s going to explode like a watermelon falling from the top of the Empire State Building right there in front on your daughter’s teacher if you don’t get back home to take some more painkillers and collapse on your kitchen tiles, where you tell your young children to “f*ck off” feeling incredibly guilty, then cuddling them as soon as your meds kick in.

The post got me thinking. What would my open letter say? What would I want my friends (and all of you) to know about living and coping with chronic pain? Here goes…

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Loving the Prisma app and think this perfectly sums up my feelings about this post.

What do you see when you look at me? Is it the strong, vocal, independent woman I try to be, or is it someone else? Someone weak, crippled and reliant on others. God I hope not.

I tell you I’m fine, and I am. I really am. But chronic pain… it does something to you. Something aside from the uncomfortable spasms, the pins and needles, the stabbing pains and dull aches. All of that, sore as it makes me, is bearable. I don’t need to talk about it. I’m fine. I can curl up on the sofa in my pyjamas, I can deal with the numerous doctors appointments, and I can make the judgement call about when to rest and when to keep moving. When it comes to the pain, I’ve got it covered.

But do you know about everything that comes along with the pain? Do I hide it well? I doubt it; I’ve seen me after a few wines. I overshare and if you catch me on a really bad day, you’ll see me cry. Those tears are rarely tears of pain, they’re tears of frustration and exhaustion. So what is it that I struggle with? It’s this:

It’s the fear that nags at me before events, knowing I might have to leave early or may not cope at all, and the sadness when that fear becomes a reality. It’s the worry I’m letting people down by not going, but letting myself down if I do.

It’s the utter anger I feel at myself every time I do something that leaves me vomiting on the pavement or in bed for days afterwards, and the contrasting unbelievable elation that I feel when I do something that doesn’t leave me ill. It’s like I controlled it, it’s like I won.

It’s the cognitive dysfunction that leaves me with an inability to string a coherent sentence together, remember a name or recall a story accurately, like I’m watching someone else’s life through clouded windows and I can’t quite see things clearly.

But it’s the fear that I’m boring now; the worry that fun things are painful and boring things are safe and that’s just the way it is.

Above everything, it’s wondering if you see me differently now. And hoping that you don’t.

Migraines: 22 years, 5 ways to cope

I was meant to go for curry with my work friends tonight. Our first team night out EVER and I arranged it. I sent a flurry of emails, I got excited, hell – I even got dressed this morning with “waistline must be stretchable for copious amounts of curry” in mind. So when I got a headache mid-morning, I did the usual. I popped pills, did what I could to get control of my surroundings, and took all my normal steps to get rid of it. By 2pm I knew it wasn’t going anywhere and by 3pm I was nauseous and losing vision, worrying if I would make it home in time.

After a somewhat dicey drive home, I got in to bed and promptly fell asleep for three hours. That’s right; whilst my co-workers were ranting about the day job and chain eating naan bread, I was asleep.

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You have no idea how many social events I have missed out on in the last 22 years because of these damn things. These things that fight me and destroy me. I’m tough, but they’re tougher.

I like to think I’ve got pretty good at coping with pain over the years. In fact, I will sit through many a social event with throbbing pains in my legs, pins and needles in my hands, stabbing pains in my spine and you wouldn’t even know about it. But throw me a migraine when I’m not prepared, and you got me. I’m a gonner.

That’s why my life is all about being prepared. It’s not spontaneous, it’s not fun. There are rules and I play by them and, more often than not, I’m prepared to catch that migraine before it catches me. This may sound pretty high maintenance, but once you get good at it, you can do it so systematically that no one would even notice.

#1 – Eat.

Breakfast, lunch and dinner. On time. It’s generally an easy one to stick to until someone suggests brunch (that someone is normally me) and I have to sneak in a secret breakfast before hand, and then make sure brunch is eaten at lunch time. Same goes for afternoon tea. A 4pm roast dinner, however, is completely out of the question.

#2 – Drink.

Water and plenty of it. I’m so bad at this one that I don’t think I should be allowed to offer it as advice. Except that it’s an obvious one and an important one, so I’m going to keep saying it and hope that at some point I start listening to myself.

#3 – Regulate lighting.

Stay away from artificial lights or constant changes to light, and keep sunglasses with you to protect you from bright daylight. Where possible, avoid sitting in a dark/dimly lit room and staring at a computer screen. The contrast is a killer. Keep things as consistent as possible. Generally, this is doable but staff training is basically a guaranteed disaster.

#4 – Regulate temperature.

Extreme changes to temperature are a problem as well. Avoid hot, stuffy environments (like the trains in rush hour) and avoid particularly cold places like meeting rooms with lots of air con. Take layers everywhere you go to help you out in the times when you can’t control your environment.

#5 – Know your meds. 

Popping pills won’t solve everything, but if you can’t control your environment then you need to know which meds will delay things or stop it all together. And please, make sure those meds are on you AT ALL TIMES.

 

 

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.)