Good days & bad days.

This post is for all those out there looking for answers, for those who are confused and for those looking for comfort after getting a diagnosis that brings little comfort.

I have a condition called paroxysmal hemicrania. As well as a fantastic tongue twister, this rare condition is where you get a particularly nasty headache which comes in shots of short pain in one side of your head. Headache seems like an insignificant word when describing the condition, when I’m ill, I usually call them headache attacks because that’s what it feels like. It feels like your brain is being attacked from all sides with very little way of defence.

Let’s go back to the beginning. It’s December 2013, a few days before Christmas. I start noticing a very occasional pain in the right side of my head. It’s not like any headache I’ve had before, it’s short but extremely painful. I take ibuprofen in the hopes of warding it off. I make it through my shifts at work and head home for Christmas without much fuss. I tell my mum of the pain and we both dismiss it as just a particularly painful headache. Come December 27th, I have my first full blown attack. I’m up early, getting ready to head back to Sunderland for my last shift at my Christmas job. I’m in the shower when the pain hits me like a ton of bricks. It was too much and next thing I know I’ve blacked out in the shower. I manage to get out with help from my mum and try and blurt out that the pain’s back. It’s not just going away however. Due to the other symptoms I was showing; stiff neck, severe rash and temperature, I was sent to hospital with a meningitis scare. After a lot of tests including one which meant I got a needle in my spine, meningitis was ruled out. However, a week later I’m still getting these pains. It’s coming in waves, I have real trouble dealing with any kind of light and my heat rashes are coating the entire right side of my face and neck. I go back to the doctors in hope of some sort of relief. The doctor I see is as baffled as those at the hospital but takes a guess. He gives me a new painkiller and tells me if this works, you have paroxysmal hemicrania. The painkillers worked thankfully and that gave us a diagnosis.

I do feel incredibly lucky to have a diagnosis so quickly. Due its rarity, it can take people years to be diagnosed. Looking back now though, I also wish I’d had meningitis. Unfortunately this is no one off.

One of my favourite things to distract myself is coming up with metaphors and similes for the pain. It’s also handy when describing what you have to other people. My current favourites are:

My brain is be grated on either side.

It feels like my head’s being boiled alive.

My brain’s turned into overcooked scrambled egg.

It’s like someone’s punched you in the face and your head’s on fire.

Over the last few years, I’ve had attacks at varying levels of pain and varying lengths of time. Sometimes I’ve just needed to sleep it off for the day with minimal painkillers. Other times I’ve been living in my pyjamas for weeks on end, taking a pharmacy’s worth of pills and barely being able to wash myself without help. Curling up in a ball is a small luxury in these moments. I’ve ended up in hospital waiting rooms leaving every health professional completely baffled when I tell them what I’ve got. Usually you can take comfort in a doctor knowing what they’re talking about, in my case not so much.

In the past, attacks could cause an interruption in my life that lasted a month at most. I was diagnosed with the episodic version of my condition, so I’d have periods of remission. Right now, I’m coming to the realisation that my condition is no longer episodic but chronic. I’m also in the midst of being diagnosed with another condition which is set off by PH, but rather than in my head I get pains in my jaw, neck and ear. I started a new job in April and after two weeks of training I got an attack. This lasted around three weeks but it hasn’t really ended. Since my return I’ve still had bad days where the pain is too much and I can’t physically handle it so all I can do is sleep. I’m having to come to the realisation that there isn’t much I can do but hope my painkillers work for the day and I can make it through my work. Those are the good days and it’s so important to enjoy them.

Today was a good day. Today the pain was manageable. Today I got to bake muffins and see my best friend and write this blog. Even in the midst of a full blown attack I might get a couple of hours where I don’t need feel like screaming in pain. I’ll try and tidy or watch my favourite film which requires concentration.

If you get diagnosed with this condition, I know this blog might be a depressing read but I think the best approach is to keep positive. That’s always going to be easier said than done. With me, I try best to keep a sense of humour. Coming up with silly names for symptoms or making stupid jokes with a brain of putty is sometimes enough to encourage a hint of happiness in a heap of pain. Make sure you have support around you, I don’t know what I’d do without my mum or my friends. I’ve also found chatting to people online with the same condition weirdly comforting, rare conditions can be isolating so it’s good to know you’re not the only one. If you’re looking for someone to talk to, I’m here to answer any questions. This post might be a lot to take it, if anything I just needed to vent. It’s important to have a release, I’m lucky in that I’ve found mine. Anyone out there in this situation, find your release.

Don’t let the pain win and appreciate the good days.

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YouTube ain’t just for cat videos.

It’s safe to say I’m a long time YouTube viewer. I’ve been watching since before the word ‘youtuber’ was really coined and I’ve even dabbled in a little vlogging myself. What appeals to me about YouTube is how accessible it is. You’ll find everything from short fantasy films to LGBT education, comedy sketches to political rants and of course cat videos. I’ve lost count of how many channels I’m subscribed to but here’s some of my current favourites:

Hannah Wittonhttps://www.youtube.com/hannahwitton

hannah witton

Hannah is a British 20-something who vlogs about sex, relationships and feminism amongst other things. What I love about her videos is that it’s like chatting to a friend, no matter what the topic, it could be your favourite book that month or periods. Hannah’s open approach is educational but never patronising and you can see the passion she puts into her videos.
Highlights: Her ‘Drunk Advice‘ series is fabulous, Hannah and a friend get drunk and answer Twitter questions with hilarious results. Never fails to crack me up.

KickThePjhttps://www.youtube.com/user/KickThePj

kick the pj

PJ is first and foremost a storyteller. I’m not entirely sure he’s from this planet because his content is awesome, in the true sense of the word. PJ’s short films transport you to whole other worlds filled with mind bending characters. In between short films, we get a fresh approach to vlogs, with occasional looks behind the scenes and some DIY tutorials. I love watching PJ’s videos because there’s always something new and you can tell he’s doing what he loves.
Highlights: Office Space is a super endearing film and while you can tell where the influences for this one have come from, it’s still very much PJ’s film. It is 3 years old but it’s a good place to start and still one of my favourite videos PJ’s ever made.

Daniel J. Laytonhttps://www.youtube.com/user/DanielJLayton

Daniel J Layton

Daniel J. Layton is a severely underrated YouTube treasure. When his videos pop up in my subscription feed, I always watch straight away because I know I’m in for a treat. Dan vlogs about what’s going on in his life, nice and simple. But he knows how to subtly work up to a punchline to perfection so an everyday anecdote turns into something really amusing. Dan’s videos are completely relatable but not in a cliché way, he’s just very honest and lovely. Just go subscribe!
Highlights: His ‘Baking with Layton‘ series is like the YouTuber version of The Great British Bake Off. Dan and a YouTube friend bake something, it’s a strong format that always gives me the giggles.

Hazel Hayeshttps://www.youtube.com/user/ChewingSand

Hazel hayes

Hazel is an extremely witty, Irish filmmaker. Whether it be sharing 30 minute long vlogs of her month, making thrilling short films or interviewing A-list celebs, Hazel has a complete air of professionalism at all times. Her brilliantly named Time of the Month series is exceedingly well put together, it’s a lot to share but Hazel gets the perfect balance between emotion, theme and aesthetic. When it comes to short films, if you like psychological horror, Hazel’s channel is for you. My particular favourite is Septum which I’d love to see fleshed out as a feature film.
Highlights: Tipsy talk is a series in which Hazel and friends (sometimes famous) get together for a drink and chat. You’ll never sure where it will go and that’s what makes the series so great; its unpredictability.

Connor Manninghttps://www.youtube.com/user/AConMann

connor manning

Connor is a young American vlogger who makes videos about sexuality, mental health, relationships and dating. His videos are sometimes inspired by questions from his views and other times, just by something in his life. I love that his videos are clearly for him, he’ll often say as he gives advice that he’s telling himself as well as advising the viewer. His videos have a pretty casual tone even whilst sometimes dealing with darker subjects. I find his sexuality videos particularly therapeutic, as someone who also identifies as bisexual, it’s nice to hear someone else’s POV.
Highlights: He’s covered so many topics, it’s hard to choose my favourites. I’d recommend No Bae November which is explaining how relationships are nice but they’re also just another way of living your life (he words it much better than me) and Too Gay, Too Straight which really resonated with me as it’s something I’ve gone through myself.

This is a very small selection of my favourite YouTubers, I could go on for hours. I may write another one of these in a few months time, I’ll probably have subscribed to even more channels by then! Got any YouTube recommendations for me? Let me know in the comments.

Why I bloody love Skins.

I will fully admit I am a television addict. I love the joy of finding a new show to immerse myself in, the detective work that comes with working out the plot, the bizarre emotional connection you get to fictional characters and the anticipation of the next episode or season. From fantasy shows set around a family of New Zealanders who also happen to be Norse gods to sitcoms about the parks and recreation department of Pawnee, I’ll watch it all. However, there’s one show I will always come back to; Skins.

If you haven’t heard of Skins, it’s a British drama set in Bristol that follows a group of teenagers in their last two years of school. It first aired in 2007, with the cast changing every two series and ended in 2013 with a one off series bringing back characters from the past generations, showing them in adult life.

gen 1

I was only 13 when the first series started but because I have a mum as cool as Regina George’s, I was allowed to watch it. It opened me up to a world of partying, drugs and sexuality. While I knew some of it was exaggerated, what struck me was that some of the situations and problems they were dealing with were something that could affect me in the near future. The actors are actually age appropriate and not in their twenties for a change, it gives the show a completely realistic feel. It isn’t all about the teenagers though. Parents, teachers and the like are played by some great British actors. While most think of Peter Capaldi as the Doctor, I can only see him as Mark Jenkins, Sid’s foul-mouthed father.

The characters are fully rounded and you can often find yourself picking traits in them that you have yourself. Some appear a tad stereotypical on the surface, a speccy nerd who follows his best friend like a side kick or a metalhead who isn’t the most friendly but with each character getting their own episode, you’ll soon discover that stereotypes aren’t everything. The writing will make you love them, hate them and back again. Online, especially when you get into tumblr territory (find my own Skins tumblr here) you’ll see a lot of debates on favourite characters. While some can sympathise with a character, others are quite ready to bring them down.

Skins-Series-4

Plot wise, it packs a lot in. It deals with mental health from eating disorders to depression, drugs, grief, sexuality and religious beliefs clashing, falling in love, teenage pregnancy, crime, being adopted and how to get that darned history coursework in on time. There is something there for everyone. Plus with the cast changing every two series, you can see different backgrounds and perspectives on British teenage life. If you aren’t feeling one generation, there might be something for you in the next.

The other thing I loved about Skins was the soundtrack. I was and well probably still am a total indie kid. Skins introduced me to loads of bands and artists, with every episode featuring a lot of new talent. As well as new, they picked pop classics (Britney Spears = excellent car chase music) and soundtracked an entire episode with Debussy. The music choices are just as well thought out as the plot, with each moment musically glazed to perfection.

gen 3

I don’t want to say anything more because I don’t want to spoil it for those of you who haven’t had the pleasure of watching. Even after all these years and multiple rewatches later, I’ll never get sick of Skins. It’s TV at its best. Binge watch it. You’ll laugh. You’ll cry. You’ll become a teenager all over again.

 

 

 

Alternative Universes.

So as we get into January, the daily grind starts again. Although for us joyous people in retail, it never ended. Anyway, everyone’s trudging back to work and school after the season of indulgence and it always feels a little bleak. Why is it no longer acceptable to crack the prosecco out for breakfast and have a decorated tree in your living room?

Our days become a little less excitable and a lot more ordinary after the festive season. We all have a bit of a reboot. Some decide to detox and hit the gym, even if it is only for a month while most hit the reset on their jolly emotions. The festive period made everything seem a little brighter and happier and it reflected through everyone, take notice because people smile a hell of a less throughout their year. When we get back to this stilted ordinariness, I refer to one of my favourite concepts:

Alternative universes.

It’s the idea that right now there are hundreds, thousands, well an unfathomable number of other universes. Some dramatically different to ours where say the dinosaurs still roam but others only a little different where I might happen to have brown eyes instead of blue. It’s an insane idea to get your head around that there’s possibly tons of different versions of yourself out there but at times it can oddly give me comfort.

Say I’m having a bad day, I’m running late to work, I’ve got a long shift and I’m full of the cold. All you want to do in that situation is curl up and feel sorry for yourself. Don’t get me wrong, I obviously do that too. However, I think about the universe where I’m on time to work, feeling great and I’m only in 4 hours. At least somewhere out there, I’m on the right path. There’s also the me out there who’s already writing her 3rd bestselling novel and I’m happy for her but I know I’m not ready for that yet. You can easily use it in reverse, as the only saying goes ‘things could always be worse’. For instance while dealing with tricky customers is a pain, I could be in a world where the Hunger Games is actually real or the mass majority of the population has turned into cannibals.

Now a lot of you could be saying I’m just running away with my imagination or I spend way too much time day dreaming. To be fair both of those assumptions are pretty accurate. However, I urge you to creative your own alternative universes. Some only a little different, where you’re studying photography instead of art but others that are completely over the top with monsters and aliens.

Some days we all feel like we’ve hit rock bottom. I’ve been there. I’ve been stuck in the emotional fog and it’s horrible. My alternative universes help me realise that while things could be better, they could also be worse. It hurts to lose someone but it’s even better to have had them in your life at all. Life is a middle ground. Sometimes you need a little bit of the ridiculous to appreciate it.

 

Warning: clichés ahead.

So I’ve sat down with a green tea to reflect, like a gazillion blog posts before me. I don’t think I’ve ever really appreciated the whole celebration of New Year until this year.

I was sensible this year, I stayed in for most of the night with my best friend and her dog. We watched films, treated ourselves to pizzas and chocolate and stayed sober the entire night. As midnight approached we went to a firework display the town over. At the stroke of midnight we gave each other that huge cheesy grin that Hogmanay qualifies for and hugged. We were surrounded by tons of people doing the same. Greeting each other with hugs and kisses and all the well wishes in the world. It was a pretty adorable sight to see.

While I’ve usually found making New Year’s plans stressful, only finding that it was another excuse for a party and while I’ve had fun at those parties, the next day comes with an inevitable hangover and a bit of let-down. Was all that fuss worth it? I think New Year is about coming to the end of a year and appreciating what you’ve got in your life. All the alcohol and party dresses aren’t necessary to appreciate your wonderful friends and family.

I have a feeling my reflections on New Year, have something to do with the kind of year I’ve had. 2015 has been full of ups and downs. I lost two family members early in the year and I’m still getting through that now. That, the stress of finishing university and my general lack of routine for the second half of the year have made me really ill. Unfortunately it’s not something I can really help, having a rare headache condition sucks. With all the negativity though, I can truly adore the positive in my life. I graduated with an honours degree in English and Creative Writing, seen some of my favourite bands live, had an amazing holiday to Amsterdam with my Mum, spent my 22nd birthday playing childish party games, visited my Dad’s for a lovely chilled break, I’ve dressed up in fun costumes for birthdays and Halloween, spent plenty of nights out with friends and I’m ending the year in a job which has its challenges but I enjoy it.

I’m very much ready for a new start, 2016 brings a nice clean slate. I’m not usually one for resolutions but I want this year to be all about writing. I’m determined I’ll finish my first novel, I started it as part of my final project for university so it’s not like I’m starting from scratch. It’s an achievable goal and I know how satisfying it will be. So with this post, I’m starting the year as I mean to go on, writing.

Happy new year everyone, I hope 2016 is good to you all.

Tell everyone, lasers are cool.

I haven’t blogged in rather a long time. Considering I want to be a writer, that’s practically disgusting. However, this year has been one of the most hectic and emotional I’ve gone through, blogging hasn’t exactly been my top priority. Now things have settled down so I’m back and hopefully on more of a regular basis too.

I posted late last year about a condition I have called PCOS, and how I’d just started laser hair removal treatment. You can read it here. This is essentially a sequel. As of a few weeks ago I finished my treatment.This is my story of the process I went through, a process that it might actaully be available to you.

One of the symptoms of PCOS is growing dark hairs in places more common on men than women, in my case my neck and back. It’s one of the things that I’ve always struggled with, I never had the patience to wait for my awesome beard which I would obviously rock. Joking aside, as I started to get into make up and building up my own look in my teens, I always had unwanted hair to deal with first. My getting ready routine consisted of hair removal creams and a lot of plucking. Eventually I got fed up.

Laser treatment was something I’d talked about, it was something that would be a possibility in the future if I saved up. One day when I spoke to my doctor I discussed how my recent medication was helping my PCOS, it had made a little difference in hair growth but nothing to rave about, I mentioned about laser treatment, asking what the results of it are like, would it be worth it and she told me she’d find the relevent information for me. A few days later I got a phone call from my doctor with a rather delightful surprise. Through the NHS, women with PCOS can get free laser hair removal treatment. Now if PCOS affects so many women then why aren’t we screaming this information from the rooftops? I was elated. My years of nairing would be a thing of the past.

I was refered to a private clinic for 30 minute appointments every 6 weeks. I had 12 sessions treating my neck and back. For those of you who are afraid due to the expected pain, don’t be! I actually got my first tattoo before I started treatment almost like a warm up and that ended up being more painful. Most of the time you’ll barely feel a thing. Cold air is blown over the skin, giving it a slighly numb sensation. If you do feel something, it’s a nip. I’d take that nip, that physical pain over the emotional pain. I wish I had pictures to show you it’s worth it but you’ll have to take my word.

I can put my hair up without worrying, I can spend my time applying eyeliner and not hair removal cream, I can feel somewhat more confident about my image. To any of you ladies with PCOS out there that know what I’m talking about, I urge you to reach out to your doctors. Your doctor’s an asshole and won’t listen to you? Change to another and get what you know is owed to you. If you want treatment to feel more confident, sexy, beautiful and like the damn woman you know you are, then you are quite welcome to it.

Altogether now, tell everyone that lasers are cool.

A Rant on PCOS.

My end to 2013 and start to 2014 hasn’t been the smoothest. Just after Christmas, I had a bit of a meningitis scare. Spent a day in hospital getting all sorts of tests, I was well and truly poked and prodded. Luckily it wasn’t meningitis, I wouldn’t have been too happy with Santa Claus leaving me that late gift. However, the main symptom which set off my scare, a bizarre headache in the right side of my head, has led to a back and forth between my doctor’s surgery as we try and diagnose my problem. After a week of new medication, we might have found out what it is but alas I’ll have to wait until my next appointment.

Since my mind has been pretty focussed on health just now, I wanted to discuss another condition I happen to have and today seemed appropriate to do so. I was diagnosed with Polycystic ovary syndrome or PCOS years ago. Today it feels appropriate since I got my second laser treatment treating one of my PCOS symptoms.

For those of you who haven’t heard of the condition, which quite frankly wouldn’t surprise me, PCOS is a condition which affects women and how our ovaries work. To put it simply, our hormones can go rather wonky and we can develop cysts in our ovaries. I don’t want to bore you with details, but by just mentioning it I’m getting the word out. Obviously because of some of the symptoms it causes and the area of the body it concerns it’s not the easiest thing to talk about. For example, one of my worst symptoms was dark hair growing where it wasn’t wanted. That’s why today I’ve been having laser hair removal. And why would I share this information with the internet? Because not enough people do!

PCOS affects an estimated 1 in 5 women in the UK but when I’ve spoke about it with friends rarely any of them have ever heard of it. I understand that it’s rather embarrassing but the internet has managed to banish that block elsewhere. We can speak anonymously on blogs and forums and we can speak publicly in the form of video blogs and social networks about all kinds of topics. Yet despite how common PCOS is in a doctor’s surgery, it’s very uncommon online. Now I’m very aware if you search for it, you’ll find what you’re looking for. Google is a wonderful thing, I will not deny that.  The jump that needs to be made though is for it to be spoken about in real life.

I’m a very open person, I pride myself of essentially being an open book. However, when it came to PCOS, I’d get a little bit quieter. If someone asked why I had to go to Edinburgh (I have to go to a specialist there for laser treatment) I’d never specify, just dance around an answer. I’ve now had a few treatments though and quite frankly, I’m feeling happy about it! It is early days but the results are great and I already feel better about myself. When I share something on my facebook, twitter and various other social networks (yes, I’m a bit of an internet addict) I want it to be something that has made me happy.

I’m not saying that we all have to come forward but just be aware of it, this goes for any conditions not just PCOS. Don’t suffer in silence, you’d be surprised how good it feels to let it out. You never know you could help someone figure out what’s going on in their own body or make someone feel like they’re not alone.

More information on PCOS – http://www.nhs.uk/conditions/Polycystic-ovarian-syndrome/Pages/Introduction.aspx