Rare Disease Day- But you don’t look sick


For a lot of people today is a day that doesn’t come round often enough. It’s a day for people who spend the majority of their lives fighting the battle to be recognised and taken seriously, or just explaining over and over again exactly what is wrong with them. My battle is being a sick person stuck in a totally normal looking body (apart from my arms that look er, a bit backwards and circus-like). I go to work every day, I go on holidays, I go out with friends, have a boyfriend, I exercise, eat out, get drunk- I do pretty much everything ‘normal’ people do. The catch is, I often do it feeling like utter crap.

“But you don’t look sick.” Yeah thanks, I know, but I am.

Rare disease day covers thousands of different conditions and quite often, they aren’t truly rare, they’re simply rarely diagnosed due to lack of awareness and  often the dots haven’t been joined yet. There are few records of diagnosis, few doctors to provide adequate treatment and few chances to raise much needed awareness and funds for reasearch. Mine is Ehlers Danlos Syndrome, which you might have read on this blog before (sometimes I do moan, and it’s usually because I’ve spent the day limping). It’s basically bad joint pain, dislocations (hips and shoulders), chronic pain (every single day, in totally random body parts), varying degrees of fatigue, swelling, fragile veins and easy bruising. I have it lightly compared to some. And that’s why today is so important.

A lot of people out there with a rare disease suffer almost entirely alone, even more so if it’s an invisible one. When you can’t see the affects of something, it’s obvious that people will forget, and you can’t blame them. My family forget, my friends forget, and now I’m older and more in control of what’s going on, I try to forget. I have the ability and luckily the option to pretend a lot of the time that nothing’s going on. It’s only on days when I can’t ignore the pain or something has happened with a joint that means I’m limping or injured that I think constantly about being ill. The only outwardly physical mark on my body is my feet, where blood is pooled and no one knows why or how or what to do about it.

But like I say, I feel like I get off lightly. I can go about my life and hold down work and have a social life and progress as an adult, even though it would be nice sometimes if people considered I don’t feel great 90% of the time, I can’t really complain. Chances are you know someone with a rare disease. Or an invisible one- and that includes mental health. I would love to spend more of my time and more of my energy raising much needed awareness and funds for Ehlers Danlos, but since I don’t have much capacity to do so these days, Rare Disease Day is a nice chance to shout once a year that we all need a little attention some times.

If you have a rare disease or feel like you suffer from a condition that could use more of a voice, don’t let the last day of February pass you by next year. The more people that make a little noise, the bigger the chance of being heard.

Little goals, little victories

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Aims are easier to stick to in the short term. Resolutions for a whole year never work out (although my one to get more than one haircut in 2016 WILL stand, I am adamant of it) and I read an article recently in a weird magazine in a waiting room that said the best way to achieve things is to have small, short term goals. When I was 20 I sat down on January 1st and wrote this long list of outrageous goals that would ‘overhaul’ my life and make me what I thought would be a better person, but what ultimately would just make me thinner and more miserable. That was a terrible few months and I never want to look at cheese as an enemy again. But having something to aim for makes me feel less like I’m wasting my life watching Suits and whatsapping my friends about commute hatred.

So my little goals are starting now and going to April 1st. Life is better in list form, so here goes:

  • Buy only one coffee a week.
  • Bring my own lunch in at least 3 times a week.
  • Stop talking myself out of running while getting changed to go running.
  • List at least 2 items of my extremely excess clothing on eBay every Sunday.
  • Make at least three plans with my friends that don’t involve alcohol.
  • Do the physio exercises that will ultimately make my life better every other day.
  • Actually get around to researching cruelty-free make up and make a purchase.
  • Make a spreadsheet of my outgoings like a real adults.
  • Master the first week of headspace without falling asleep 2 minutes in every bloody time.

Eyebrow stencil and powder from K Co

  
Saving pretty much every penny recently has made me realise just how much I used to spend on myself. I’m trying to pretend I don’t miss flouncing into Boots after work and dropping £30 on make up and toiletries that I didn’t even really need, BUT I DO. I was speaking to a make up artist at The London Health show last month about the cost of make up and she gave me a list of things you should spend money on. Basically, Things that stand out: brows, blusher and lips. I asked if spots count as a joke because mine like to stand out A LOT, but she didn’t get it. So she moved on to eyebrows and to cut a long story short, I came away with a K Co brow powder and stencil kit.

  
It’s the best make up I’ve bought in a long time. I never would have gone out looking for an eyebrow stencil because I have neat eyebrows anyway and couldn’t imagine myself stencilling my face but actually, it’s really bloody good. And easy. And quick. Powder your brush up, line up the stencil, fill in the gap. Done. It takes literally about 40 seconds and you get two very even, very nicely shaped eyebrows.

This stuff is also VERY stubborn so you won’t rub it off or lose half an eyebrow in the rain, but you can get rid easily and quickly with some remover or a face wipe. The other good thing about this, is that the brush is such a good shape, you can use the black powder to do your eyeliner in one easy swoop.

  

  
seriously, if you do your brows everyday and want to try something new that’s easy and got staying power, I highly recommend this kit. It’s £24.99 and I imagine it’ll last a good 6 months at the very least. Plus you can also use it as eyeshadow and liner. You get two stencils with each kit, one ‘natural’ and one ‘thin’. It’s well worth a pay day purchase, and while I wouldn’t usually trust new products on my eyebrows because I found a Body Shop powder I like about 5 years ago and am boring, this kit is really quite brilliant.

You can only get K Co make up online FYI, so happy browsing. See what I did there. BROWsing.

Okay bye.

5 reasons investing in a DSLR camera will pay off

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Disclaimer: The camera I use is my boyfriends, he invested the big bucks, but what’s his is mine…right?

He lets me use it anyway, and he’s taught me so much about photography that as soon as I can, I’m going to invest too. I never would have wanted to spend that amount on a camera before, because I had no idea how much I liked photography. It sounds kinda weird but having a DSLR camera has done so much more than just provide us with high quality holiday snaps, it’s become a strangely big part of our lives- it’s an investment that’s worth making for way more reasons that really good images of weddings and you loving life on a beach.

1) Photography is a really valid skill.

There are so many jobs in the creative industry now that value the skill of good photography- and only so much of that is framing a nice shot. When I was looking around for jobs a year ago (I worked in digital marketing/advertising and now in social media) so many descriptions stated photography and being able to use equipment. Knowing how to change the settings, sort out the light and take the right size photo makes you seem pretty sleek, especially now, where creative media types are expected to do it all. Even for a blog, photos say as much as the words.

2) You learn additional skills

I never imaged I’d get much into editing photos outside of chucking an Instagram filter on something or brightening it up in VSCO cam (an app well worth downloading FYI). But once you’ve invested time to learn how to take good photos on what can be a complicated camera, you may as well finish the job. There’s so much you can add in the editing phase and again, learning to use programmes like LightRoom and PhotoShop, even it’s just a basic understanding, gives your CV a whole new layer. It’s also quite nice to have an end product that’s basically a little work of art.

3) You’ll want to take more photos

I’ve gone from liking taking photos of impressive looking breakfasts and the occasional night out picture of friends holding an array of cocktails, to wanting to take photos of everything. Suddenly, because you can take high quality photos, everything is an opportunity to take another picture. Seeing a man on Southbank making massive bubbles for some very excited kids last weekend basically turned into a photoshoot. Photography is a pretty nice hobby once you get into it.

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4) Instagram is powerful

A lot of people who market themselves, a brand, a company or a website use imagery to do it, and right now PRs and such want Instagram followers. They want to work with people that have a bit of influence on Instagram, can take decent photos and can stand out. It’s the ‘in’ social platform right now. There are loads of incredible iphone photography accounts around, but DSLR pictures look pristine. Also, background blur ❤

5) You can do a lot with a picture

Once you’ve got a really good camera, have mastered using it and start getting the photography bug, you don’t need anyone else’s photos. I see stuff on Pinterest all the time such as prints and photos on homeware boards, and I know for a fact that I can create stuff for myself by taking my own high quality images. It’s a good skill for work, it’s a good skill for home, it’s a good hobby and nice photos will last you a life time. You can also make yourself stand out in a saturated market of content creators who can edit, do imagery, write, market themselves and so on. If you’re in the industry and want to get further, you can do a lot worse than taking your camera skills up a level.

For a few more examples of rather beautiful DSLR work visit dannyboyjnr.exposure.co

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Learning to love London again

  
There’s something really disheartening about being sick of where you live. It’s not like it’s something that you can wake up one day and resolve to fix with a better attitude or a change of diet. Moving isn’t exactly a piece of cake and it’s not always an option.  Towards the end of last year I was entirely fed up of London. I’ve lived in Zone 4 forever, and spent just over 2 and a half years in zone 2, so I’m a seasoned city dweller, but it seems that doesn’t always matter.

I’m not sure if it’s the sheer amount of people that walk into me everyday, or the fact there’s a queue for everything, or just how much I hate having my face pressed into a strangers chest on the tube, but I’m fairly sure I started grinding my teeth in public at the end of the last year. I also got massively upset that London is pricing out young people but that’s a whole other story.

If you saw a person silently weeping tears of anger into a Pret latte while death staring slow walking strangers in the Waterloo area before Christmas, that was me.

I got angry about pretty much anything and I started walking around like I was being made to live in some sort of hell- pretty ridiculous given I was a 25 year old working on social media in a job I really enjoy, renting a flat in Fulham and pretty much living a life of riley.

What a spoilt brat, right?

But actually, being sick of your surroundings is horrible. It’s the sort of thing that not so long ago would have made me throw money at my feelings and jet off somewhere pretty and forget about everything bothering me. For the last few months though, that hasn’t been an option. I can’t leave and I can’t spend money. I’ve had to slowly drag myself back to feeling less like a walking, talking bomb of anger, impatience and rage, to feel more like someone living in one of the most amazing cities in the world.

There’s only so long you can go on clenching your jaw every time you step on public transport and walking down streets swearing under your breath whenever anyone dare get in your way. It’s probably also not a good sign when you find yourself glaring angrily at buildings and bridges and wishing you were anywhere else but the place you live.

I do think. and I always will think, that it takes a certain kind of person to handle city life. And I mean big city life, where you queue in your tens to get on trains and touch at least fifteen people a day you would really rather not. I used to be able to handle it like a breeze, but once I let enough resentment and bad feeling in, it stuck.

Learning to love home again has been hard. I walked home from the bus stop one evening in January after a long day, with cancelled trains, pouring rain, an altercation with a woman on the tube and a headache from work and I realised how fed up I was of feeling fed up. More than anything, I just wanted to feel that happy, settled, at ease feeling you only get in a place you know like the back of your hand.

This weekend just gone I tried to fight off an epic hangover by dragging my boyfriend out in the freezing cold to head to Southbank and let me practice some photography skills. It was so cold and I’m fairly sure my fingers are still not the right colour, but walking around on  crisp sunny day with no need to rush or be anywhere made me feel human about home again.

Walking over Waterloo bridge, where I took the photo of the sunset at the top of the page, made me remember the reasons I love London so much and why I’m glad I get to live here. A little more of that and I think the love affair will be firmly back on.

7 times the internet has been good recently

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Because it’s Monday and you might fancy reading these little snippets of goodness instead of doing what you really need to.

1) The grass isn’t always greener– from one of my fave bloggers Sophie Cliff

2) Everyday life and racism– This is really interesting and focuses on Harry Potter actress Katie Leung.

3) 19 Treats You Wish You Could Eat With Lorelai Gilmore because Gilmore Girls <3<3<3<3

4) Instagram account switching– if you’re into blogging and social media management you should cast an eye over Social Media Examiner regularly. It’ll keep you well up to date in the world of social. FINALLY Instagram. Finally.

5) Everything you need to tackle a really bad day from my pal Hannah Gale. Basically, a link for any given emotion you might wake up with this week.

6) 6 pretty things you didn’t know are killing the planet– Cracked is one of my favourite ever websites. If you’re ever bored and want to to read some factual, crazy lists or interesting articles this is where you need to go.

7) 13 times Salem from Sabrina the Teenage Witch totally understood life. Never has a cat been better.

 

20 things that happened on nights out in Kingston Oceana

  

 1) Keeping an eye on the view from Spoons and deciding whether or not there was time for one more jug of Cheeky V.

2) Feeling like you were at the airport when queueing up, getting searched, showing ID, checking in coats and going immediately to the toilet.

3) Realising the night was probably over when slumped in arm chair in the ‘ski lodge’, wondering why they ever decided to go with an Alpine theme.

4) The weird room when you first enter that you have to walk through, full of people dancing VERY seriously to R&B and wearing a lot of denim.

5) Losing a member of the group between rooms, never seeing them again.

6) Finding out the mythical hot dog stand was open. Immediate euphoria.

7) Having a breather and a nice Pineapple VK in the weird, quiet marble room full of statues and leather armchairs.

8) Going to the ‘upper deck’ of the ballroom for a birds eye view of activities and to scout out all the bodycon and possibly that friend you lost three hours ago.

9) Losing hours of your life dancing to 5ive and B*witched in the cheese room and slipping over 7 or 8 times on the disco tiles.

10) Sticking to the carpet. A lot.

11) Stopping to wonder who decided to put dark red velvet curtains up on a wall for no reason at all.

12) Getting caught up in massive hype when there was a ‘musical guest’, cramming into the mass ballroom crowd for hours to be near the front, then getting 10 minutes of bad miming but loving it anyway.

13) The time of night where everyone gathered for 10 minutes of indie music, ending with a screaming rendition of Sex On Fire.

14) Being full of dread whenever the queue backed up all the way to Wilkinsons.

15) Watching girls put out their best moves on the wooden podiums.

16) Cheering to every single birthday announcement made by the unknown invisible DJ.

17) Trying to do a headcount in one of 4847373 corridors, getting immediately moved on by bouncers, losing more people.

18) Leaving at the end of the night and sitting on the long wall outside watching various people vomit/be tended to by emergency services.

19) Obligatory photos of the whole group climbing on those telephone boxes high on VK sugar.

20) The weird, pointless VIP rooms that people somehow got wrist bands for but no one ever found out how.

 

 

 

 

Suffering from something others can’t see doesn’t make it any less real

IMG_6064The other day I was on the tube. On the Northern Line. It was rush hour and it was packed, probably to a slightly dangerous level, as it every day. It was a bad day. A woman shouted at me and I shouted back and it was a Tuesday. The worst day of the week.

I get on the first stop of the line, so I always get a seat. I’m not that fussed about sitting. I commuted for the past three years standing, crushed against strangers with my mouth upsettingly close to armpits and chests, and I never really cared. I think you become immune to the misery of the rush hour crush after a while, which is for the best.

So there I was, sitting down, reading, looking totally able-bodied and pretty standard- which is what I am 75% of the time. However, there are some days where I can’t walk normally, or stand up straight properly, or support my weight evenly. Some days I limp from the minute I get up in the morning until I go back to bed. Some days I need to hold on to things to get up stairs and sometimes stairs are out of the question. There are even some days, thankfully rarely right now, where I should just stay at home and not move. I think if my hips could talk, they would regularly say “bitch sit down, we ain’t playing today.”

I’m not sure why my hips are gangster rap stars, but they’re not happy little souls.

That day on the tube, a pregnant woman got on,I didn’t see at which stop, and stood facing away from me, about three people down. I could barely see her through the crowds of people rolled together like a massive flesh burrito, let alone tell she was pregnant. Happens every day, I’m certain- pregnant people get on transport, takes a while for people to move. Well, I ALWAYS MOVE. I would damn sure have moved that day if I was nearer and noticed but I wasn’t and didn’t.

However, a woman standing in front of me, who had noticed, and was clearly harbouring a very bad mood (probably 5+ years of commuting on the hell that is the Northern Line) and she decided that she was going to get pregnant lady a seat. I was the nearest to her, so she started loudly telling everyone on the carriage how this ‘lazy ignorant girl’ was taking up a seat of the ‘needy’. She said some other similar comments (then I realised she was referring to me), and proceeded to tell me to ‘get out of the way’ because why would a young person need to sit. She went on a bit longer and people started to stare. She waved her arms around in my direction and pointed at my feet a few times. Then, a man moved. Pregnant lady looked mortified and I had to refrain from emptying my Evian bottle on this vocal woman’s head.

Not that she would know, but I limped, slowly, to the tube that morning. I walked, pretty much in agony and desperately needed to sit. I took painkillers for most of that day, I had to spend an hour the evening before with my legs elevated to stop them swelling and drain some of the excess blood that gathers down there- overall not a great time.

It’s not the first time something like this has happened. And this isn’t something that I can do anything about aside from wear a badge or explain it to complete strangers which will never happen.

The point is, to look at me, you would never know there was anything wrong. I’m even pretty sure some people close to me think I’m just a bit dramatic, which makes me keep this whole invisible illness quite low key. BUT IT IS THERE. I have a real, diagnosed, immensely painful, debilitating, exhausting genetic disease. Ehlers-Danlos is considered rare, but it’s more likely that it’s rarely diagnosed correctly, as are many conditions similar to mine.

I know people aren’t mind readers. I know you can’t expect people to think twice before speaking, but there are so many conditions that exist that we can’t see. A bit of thought goes a long way sometimes, that’s all.

 

Recipe: pastry-free green veg and baked cheese pies

  
I’m never going to be the type of person who dances around the kitchen throwing kale in the air like I just don’t care. I’m also not going to be posting photos of myself doing yoga next to a cup of green tea anytime soon, but last week I discovered something green and delicious and idiot-proof in the cooking stakes.

I like veg, I really do, and I like healthy food A LOT, but I have little restraint for carbs, fizzy sweets and biscuit binges. I’ve also spent all of my adult life so far being a slave to a condition that messes with my entire body. One of the most important things I can do to feel well and keep myself upright is eat a good diet. It helps with all manner of symptoms and we all know how vital eating well is, regardless of what’s going on with our health.

These little pots of joy (not to be confused with the chocolatey, deliciousness that is a Cadbury Pot of Joy) are my new favourite, low maintenance way to up my intake of good food. They are also going to be my new staple for lunch (I need to probably consume less soup and rice cakes before I start looking and bleeding soup and rice cakes) because I am behind anything that tastes as good cold as it does hot. And I don’t care much for the microwave queue at work. Very few good times are had in the microwave queue at work.

I don’t really know what to call these, they are groundbreaking and they were a kind of happy accident, so I’ll go with mini vegetable pie bakes.

The best two combos I’ve made so far are spinach, parsley, spring onion, leek and kale, OR kale, leek, courgette and green pepper.

Whatever you use, chop or shred it up pretty small before chucking it in a pan with a little olive oil and sauté until it’s all soft (and shrunken). If you use corugette, just chop it thinly into slices and leave it to one side.

For 4 portions about 1 large leek, 100g spinach and 80g of kale is enough.

  
Once you’re done with the veg, put it into an oven-proof dish, or mini dishes if you’re making small portions. Crack some eggs in a bowl (about 3 for a pie that’ll give 4 portions. I used one for the two little ones below), whisk them until combined and pour over the veg. Use a fork to make sure all the liquid soaks through. If you use courgette, layer it on top at the point.

Then the best bit- THE CHEESE. Crumble feta or goat cheese on the top of your greens, chuck some black pepper on, then bake.

About 25 minutes is sufficient for little pots, but if you make a big old batch, it might need longer to make sure everything cooks nicely inside. The egg sticks everything together, and makes a glaze that keeps it all whole, and the cheese makes a nice crispy topping- once it’s brown it’s likely ready to exit the oven.

Bloody delicious. 

14 things to do, eat or treat yo’self to this Valentines

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I’ve never been a big V day person and I definitely will not be found on Sunday rolling around in rose petals eating heart shaped things and wearing pink underwear. My boyfriend genuinely sent me an iPhone calendar invite for a meal on Sunday. That’s where my life is at. Romance is not dead, and on Sunday I intend to eat my bodyweight in Turkish food and then nurse a food baby on the sofa.

Through the years though, it’s given me some great nights out, hilarious ironic cinema trips (all the single ladies) and most importantly- damn good food. Even if you aren’t going to be rolling through town on a whirlwind of romantic drinks, candlelit dinners and cocktails with your significant other, here’s 14 V day bits to do, eat or treat yo’self to:

1) Breakfast for dinner at the Breakfast Club. Nothing says true love like a stack of pancakes as big as your head.

2) Cocktails at the Shoreditch Grind.  The apple of my eye martini is well worth a purchase.

3) THIS JUMPER– My boyfriend is so handsome looking all invisible and shit

4) All of the chocolatey goodness and tips to make someone VERY happy from Thorntons.

5) Anti-Valentines nights out. Because sober Monday mornings are overrated.

6) Battersea Cats and Dogs home- feline lonely? Hang out with cats, get some complimentary bubbly and find the little kitty of your dreams.

7) Flight Club, Shoreditch. For anyone who wants to forget about love and throw sharp things. This is place is ridiculously fun.

8) Bottomless brunches in London. This will make someone love you if they don’t already, or just please mates enormously.

9) Proper tasty– I’ve just discovered these food geniuses and basically want to stay in forever and make every single recipe. You do not need to go out to eat well.

10) Bloody Valentines Cabin at The York and Albany. Twisted, anti-love fun. No romance, just a blood-spattered room and food to die for.

11) This ASOS heart sweater, just because.

12) Documentary day indoors with your one true love- bed.

13) Rock N Rose red rose flower crown because you should be able to wear flowers on Valentines day. Or just buy and save for festival season, obvs.

14) The Hotel Chocolat Hearts and Truffles box. Aside from their Gin Puddles, the truffles are the BEST sweet treats they do.