Things I’ve Learnt: 2018 Edition

I’m not exaggerating when I say that 2018 has been really tough year. I went into the year high on the news that I have been offered my dream job and my main aim for the year was to buy my own house and live independently. The reality has been very different. By the end of January it was becoming clear that I was very unwell, meaning that I had to turn down my dream job because I simply was not well enough to even get out of bed, let alone work in social services. With my sudden unemployment, I was forced to take on the benefits system, which was utterly soul destroying. My dreams were shattered further when I realised that not only was I too unwell to move out, I also couldn’t afford it.

 

  1. I know my body better than anyone. The NHS is fantastic and I wouldn’t be alive without it, but the nature of living with rare conditions and being medically complex means that I need to advocate for myself and education medical professionals, because very often, they aren’t taught about the conditions I have.
  2. I have got to fight, even on the days when I’ve lost all hope. Don’t get me wrong, there have been days when all I’ve wanted to do is hide in bed and that is okay. But things won’t ever move forward if I don’t speak up and demand the treatment that I need.
  3. Friendship is a two way thing. Toxic friendships aren’t helpful and I’m better off without some people, as painful as that is.
  4. Not everyone will understand. The nature of invisible illness is that you can’t see it. A lot of the time, I look pretty healthy but that doesn’t mean I am well. People often say that I look well and therefore assume that I’m better or cured. Unfortunately, I’m never going to be cured and just because you can’t see what’s going on inside my body or the amount of pain I’m in, it doesn’t mean that I’m well. Over the years I’ve been given well-meaning, but quite frankly stupid advice about how to make myself better, ranging from eating quinoa, to drinking beer, to following a clean and plant based diet. It takes a lot of effort to not roll my eyes to these suggestions.
  5. My hopes and dreams will change. Unlike most healthy twenty-somethings, I don’t dream of traveling the world or getting a promotion or having an amazing holiday. My hopes are simple: to stay out of hospital and for my other sick friends to be as okay as possible.
  6. I can never have too many books. At the beginning of the year, I set myself the challenge of reading 52 books over 2018. This is one thing that I succeeded with and my book collection is slightly growing out of control.
  7. It’s okay not to be okay
  8. I’m allowed to be terrified. This year has thrown many new things at me, that I never expected. My new normal has taken a lot of adjusting to and I’m still not fully there. Having numerous illnesses that can’t be cured and are likely to worsen is scary.
  9. There will still be good days.
  10. I can’t face things alone. I need people to support me, whether they are family, friends or medical professionals. I can’t fight the shit stuff alone.
  11. I have got to pace myself.
  12. I’m allowed to miss being healthy and I’m allowed to be resentful.
  13. As much as I hate it, medication keeps me alive.
  14. Never underestimate the power of a pair of comfy pyjamas.
  15. My body will change and I won’t always be in control of that.
  16. Being as healthy as possible requires work.
  17. Medical professionals who get it are incredible and I need to appreciate them.
  18. I’m a lot stronger than I give myself credit for.

I’m hoping more than anything that 2019 is a little bit kinder to me and doesn’t throw any more illnesses at me.

Happy New Year to all, keep fighting and know that you’re not alone.

2018 Favourites

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Well, we’ve made it to the end of 2018: a year which has caused the British population to overdose on Brexit, we had the Beast from the East and the hottest summer in forever. Baby Shark made us want to spoon our eyeballs out and the I’m A Celeb Class of 2018 gave us the ultimate body confidence song, I Like My Bum.

I’ve really enjoyed writing about my monthly favourites, throughout the year, so it only seemed right to reflect on the whole of 2018 and the things that I’ve loved.

Books

My stand-out book of the year has to be I Am Thunder: And I Won’t Keep Quiet by Muhammad Khan. Put simply: this book was amazing, literally the only fault that I could find with it is that it finished too soon. Despite this book again coming under the YA category of fiction, I honestly feel that everyone needs to read it. Muhammad Khan is a teacher in a British secondary school. He is also Muslim and writes about growing up as a British Muslim in the 21st century, having been inspired by media reports of the three Muslim girls who fled east London to join the so-called Islamic State. Since first reading this book in May, I have gone on to re-read it numerous times, each time picking up different aspects of the plot that I hadn’t noticed when reading before. I’m really pleased that Khan is releasing his second book in early 2019.

Another book which I have to mention is We Are Young, the latest book by YA author, Cat Clarke. Having only discovered Cat Clarke this year, I very quickly made my way through all of her books and it is a close call between We Are Young and Girlhood over my favourite Cat Clarke book. We Are Young was emotional, raw, powerful…I could continue. What I loved most was that Cat writes about mental health in such a sensitive yet balanced manner. She doesn’t sugar-coat how difficult being a teenager can be and We Are Young also touches on the government cuts to mental health services and youth services and how this impacts on the most vulnerable in society. I can’t wait until Cat’s next book is out. No pressure Cat!

A book that hasn’t featured in any of my previous monthly favourites posts is Vox by Christina Dalcher. This book was extraordinary, so much so that I read it in one sitting. It’s very unlike any books that I normally read, but I was drawn to it because of the linguistic and neurolinguistic element in it. In dystopian USA, women and girls are limited to speaking only one hundred words a day. This is measured by a word counter which is fitted to their wrists, speaking over one hundred words means that the bracelet emits an electric shock, which then intensifies. Think 1984, with a neurolinguistic twist, I really loved it.

Films/TV

Like most of the British population, I was obsessed with Love Island and still feel that there is a hole in my life, come 9pm, as it’s not on TV to watch. Despite this, however, I will fully admit that Love Island is not a healthy representation on society and it highlights many issues, with how women are viewed and treated. I wrote a blog post about The Problems With Love Island, where I talked about being a feminist and if watching Love Island makes me a bad feminist. I don’t necessarily agree with the behaviours shown by some of the people in the villa, but Love Island was a winner for some summer evening TV viewing and I will be remaining loyal, babe to it.

Obviously I can’t write about my yearly favourites without mentioning Strictly Come Dancing. As always, I have loved loved loved this series, especially with the added controversy and drama. Stacey and Kevin were well deserved winners, having had the SCD journey, with Stacey going from complete novice to a talented dancer.

My stand-out TV programme of the year has to the The Bodyguard. Being a huge fan of Line of Duty, also written by Jed Mercurio, I had high expectations of this series and I was not disappointed. It. Was. So. Good. Although not to be watched in the middle of the night when you’re home alone. The twist in the final episode was outstanding…is Julia alive or not?! Roll on series two.

As for films, the ones I’ve loved the most are Ladybird, Mamma Mia: Here We Go Again and Wonder. 2019 is looking good in terms of film releases and I’m especially looking forward to Toy Story 4 and Lion King.

Spoonie Favourites

The Body Shop has to have a mention here, as their skin care has (mostly) kept my skin in reasonable condition, when I haven’t felt eel enough to properly look after it. A lot of the time, I don’t have the energy to spend ages and ages doing my makeup or having a long beauty regime, but at the same time, I don’t want to get into a downward spiral of not making any effort. Products which deserve a mention are: Tea Tree Anti-Imperfection Night Mask is specifically formulated to care for blemishes and imperfections whilst you sleep and the hydrating face mists which saved my skin from heat induced sweats over the summer.

Another spoonie favourite from this is Tesco jeans. Okay, stay with me on this one. I have really short legs – being just over 5ft is a bit of a curse in that sense – so I find buying jeans a very painful process. Once I find a brand that I like, that’s it, I’m on a convert and buy all the jeans in different colours (I say different colours and I mean dark blue and black). They are so comfy, they fit perfectly, with a slight stretch which is perfect for when my hips and knees swell up, or when I’m bloated. Plus, they are so much cheaper than my usual Jack Wills/Oasis/Top Shop jeans and they wash well as well, which is always a bonus. I’ve lived in Tesco jeans, since discovering them earlier in the year and I’m so impressed by the longevity of them. They’ve faded slightly but for the most part, they still look as good as when I first bought them.

This year, I invested in a memory foam pillow. Where has this been all of my life? Thanks to EDS, I have endless issues with my back, neck and ribs and need a pillow which offers support and it fairly firm, to support my wonky bits. It hasn’t completely resolved the issues, but being able to sleep with my neck and shoulders getting more support has made a difference.

Since I was a teenager, I have struggled to varying degrees with stretch marks. Oh I know, the glamour, but I’m nothing if not honest. Skin issues go hand in hand with EDS, so I’m always going to be more prone to the little buggers and I know that so many people also have stretch marks. But that doesn’t change how they make me feel and how much they knock my confidence. After using a combination of bio oil and Palmer’s Cocoa  Butter and not noticing any difference, I did some research and came across Udderly Gorgeous Stretch Mark Oil by Cowshed. Whilst it was developed with pregnancy in mind, it has also had a good write up in improving stretch marks in general. It smells so much better than bio-oil, is less greasy and is absorbed more quickly. It hasn’t got rid of my stretch marks (that would be asking for a miracle) but they have improved: they aren’t as red or deep.

 

Odds and Sods

My first Odds and Sods yearly favourite overlaps with Spoonie Favourites. Last year, I stumbled across Spoonie_Village on Instagram. Run by the lovely Hayley, there is also an etsy shop, where you can buy all sorts of spoonie related items such as postcards, stickers, notebooks and calendars. I honestly can’t praise Hayley enough, her illustrations have made me smile during some really dark times this year and I can’t wait to see what 2019 brings.

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Over the summer, I was well enough to travel up to York, where I spent the best three years at uni, to catch up with old friends an lecturers. York itself is a beautiful city, with individual and unique shops that I could happily spend way too much money in. I’m able to look back on my week in York and remind myself that 2018 hasn’t been all bad, and I’m very lucky to have such supportive friends, dragging me through the tough bits.

My final favourite is the general blogging community over on Facebook and Instgram. Through this community, I have met so many like-minded people, learnt how to develop my blog and writing for an audience and had the space to talk about content and what people want to read about. Big thanks to the people who give up their time to facilitate the groups which allow this to happen, especially Amy, Pippa and Jenna.

 

 

 

 

Universal Credit Saga – Part Six

I’m going to try and keep this short and sweet. Having been away for the past week, I got home yesterday to be greeted by numerous brown envelope letters. I’m not a great fan of these types of letters, they fill me with dread and give me all the anxiety so I decided to ignore them and open them when I’m less exhausted. So, this morning was the morning that I did some adult admin, including opening the dreaded letters because even looking at them was making me feel a bit ill.

One of the letters was from universal credit and gave the decision of my work capability assessment. I’m not joking when I say that I’m writing this with teary eyes: I have been granted universal credit. I have been deemed ill enough to not need to be job searching or attending interviews and I don’t need to attend work commitment meetings anymore. It honestly feels like a huge weight has been lifted and I have been fully validated over a situation which I should not need validation for.

Obviously this is not an Oscar acceptance speech but I wanted to say a massive thank you to everyone who has dealt with the crying, ranting, swearing, anxiety attacks and all the negativity associated with universal credit. The system is a bastard and has made the last few months of my life utter hell. But this fight isn’t over completely. Yes, I am truly thankful that I have won against the most broken system possible but that is not going to stop me speaking out at how unjust the system is and how it’s failing the many, not the few.

Discrimination against invisible illness has got to stop.

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The Problem With Love Island

I love Love Island. I love the drama, the stupid comments, the recouplings, the challenges full of innuendos. I love almost everything about it. But this has got me thinking. As someone who identifies as being a feminist, does watching Love Island make me any less of a feminist or a bad feminist?

As with all reality television programmes, there has been criticism and controversy over Love Island and we are only four weeks in. Perhaps the biggest or most talked about controversy this year has been the behaviour of Adam, which has sparked warnings from domestic abuse and women’s charities about abusive behaviour and the signs of emotional abuse. Women’s Aid wants viewers to recognise unhealthy behaviour in relationships and to “speak out” against “domestic abuse”.

For people who don’t follow Love Island as avidly as I do, I’ll briefly explain: Adam entered the villa after the main coupling up show at the beginning of the series. He was initially coupled up with Kendall, but dumped Kendall for Rosie, who he then dumped for Zara. Both Kendall and Rosie have now been dumped from the villa due to Adam ditching them at recoupling. Adam also had a brief dalliance with Megan. So, in the space of roughly two and a half weeks, Adam has made his way through four women. Rosie literally slayed Adam over his behaviour towards her, stating that he didn’t like being ignored or like how he was behaving towards her. Adam responded by telling Rosie that she was childish and that he didn’t need to reassure her. It’s hard to portray why his behaviour was wrong, in words, but he actively laughed in her face when she talked about her insecurities and has manipulated situations after betraying the trust of various women in the villa.

But is Adam’s behaviour really a sign of emotional abuse or is he just behaving like a lad? Some people have spoken out, saying exactly that: that he is a lad in a villa/reality show with loads of girls in bikinis and can do what he wants and who he wants. Other people have called Rosie out, saying that she is an embarrassment to women and needs to grow a backbone.

emotional-abuse

The simple fact is though, that if you are in a relationship and your partner starts to question your memory of events, trivialising your thoughts or feelings, or turns things around to blame you, it can be part of pattern of gaslighting and emotional abuse.

The level of control that Adam has over women in the villa is concerning and if he was to behave this way outside of an artificially maintained environment, then my personal view is that he needs to take a look at himself and his attitude towards women. Whilst Love Island is, ultimately, a game show, messing with people’s feelings in such an extreme way is not okay and gives a worrying message to viewers. It isn’t okay to gaslight someone, it isn’t okay to manipulate someone’s thoughts or feelings and it isn’t okay to belittle someone’s thoughts of feelings.

But my criticism of Love Island doesn’t end at Adam’s behaviour towards women in the villa. Something that was apparent even before the series started, when the line up was released was the lack of body diversity amongst the contestants. The men are all ripped and full of muscular six packs, clearly having spent hours and hours down the gym. The exception to this has been Alex, who works as an A&E doctor, and therefore doesn’t have the time to spend hours in the gym every day. Don’t get me wrong, he is still muscular but not to the same extent as the other men in the villa and he didn’t enter already sporting a glowing tan. Maybe this is why his coupling up process has been slower compared to other men in the villa or maybe it’s because he can withstand a conversation about Brexit, without worrying that we will lose all the trees and he doesn’t need to ask what an ear lobe is.

The lack of body diversity is apparent in the women as well. They entered the villa bronzed and toned, with no love handles when wearing bikinis and no obvious body “flaws”. If we are going to talk about stereotypical perfection, those women come pretty close. As someone who has struggled with body dismophia for years and years, watching Love Island can make me feel pretty crap about myself. I’m not tall with long legs, I don’t feel comfortable strutting around in minimal clothing and my body has more scars and flaws than I really want to think about and acknowledge. The women are all so very slim and have very few curves between them. In fact, the words of quippy contestant Niall, the girls look “like Instagram”, with criticism lamenting the distinct lack of body fat between them.

It would have been an perfect moment to show that love isn’t just about looks and that being beautiful doesn’t mean a body packed with muscles, being toned and having no space. However, now on series three and the casting remains an encouragement of a one-dimensional view on beauty and body types. Some people are slim. Some people are tall. Some people who have naturally flawless skin, but that isn’t a accurate representation of society and is teaching a poor message to more easily influenced younger viewers, who are being taught that beauty means tall, slim, legs up to their ears and hair down to their waist.

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The average woman in the UK in 2017 was a size 16 with a 34 inch waist and 36DD breasts. Whist the girls in the Love Island villa might have the latter of magazine perfect breasts, why is there not more representation when it comes to the former? Why, when the average body size is a 16, are the five women picked to enter the villa at the start of the series, all four dress sizes smaller than this and not representative of the average woman in the UK?

Don’t get me wrong, the women in Love Island are beautiful, each in their own ways. That I don’t dispute, but so are the hundreds of thousands of other body types that aren’t being represented on the show.

 

 

If you want more information about the warning signs of emotional abuse, you can contact the National Domestic Violence Helpline or Women’s Aid. Man Kind is a service for men, experiencing domestic abuse.

EDAW 2017

Next week is Eating Disorders Awareness Week. I have really mixed views about it. The sheer nature of eating disorders makes people who suffer from them ultra competitive, often without realising so. You never feel “skinny enough” or “ill enough” to have the label of an eating disorder attributed to you and frequently, people like frauds for having a diagnosis under the eating disorder umbrella.

I have suffered with an eating disorder for a number of years, but only felt able to admit it within the last two or so years. From memory, I don’t think my relationship with food has ever been that good, I have always had a somewhat irrational fear of being fat because I was scared of the consequences to my health. Sitting here with a semi-rational mind, I am more than aware that under-eating and being malnourished can have just as serious, if not more so, health consequences.

The first time I spoke about my eating and “disordered thoughts”, I was in my final year of my undergraduate degree. I was already encased in the mental health system but not for anything related to eating. I told my GP how much I was struggling with food, compulsive exercise and how physically unwell I was feeling as a result. And my GP’s response make me realise how messed up our psychiatric system in the UK is.

“You’re not skinny enough”

And he was right. My BMI wasn’t low enough to warrant treatment.

Fast forward to now and I still struggle with food, eating, exercise, body image and so on. I’ve probably mentioned before that I have a wonderful GP, however the mental health system is less than wonderful and I still cannot receive treatment because I don’t have a critically low BMI. I’m just over five foot tall and there has been times when I have been classed as “underweight” but not in terms of my BMI.

It’s frustrating. An eating disorder, or any variety, is a mental illness. You cannot necessarily see it. Sure, you can see someone’s size, but that is not the only factor in an eating disorder.

A few weeks ago, it was a close friend’s 21st birthday. I had bought a new dress online, it arrived, I tried it on and it was okay. But getting ready on that Saturday afternoon and everything went so wrong. The dress rode up so I refused to wear it. I ended up trying on every single dress and skirt in my wardrobe and the meltdown that I had was immense. I’m not an angry or violent person but I was so repulsed by my own image that objects were thrown, I hit the wall, I screamed at the top of my voice that I was vile and disgusting and then I sat on the floor sobbing. The problem was, I am so used to wearing jeans and a baggy jumper and a scarf, I have learnt to hide away under the layers and that becomes my way of coping. Suddenly, I was in a situation whereby that wasn’t possible and it was terrifying. I felt vulnerable and exposed, even though I ended up wearing a knee length skater dress. My bum length dress days are definitely over.

At that moment, I vowed that I needed to lose weight and so began the latest cycle of truly hating my body and undertaking a punishing routine of effectively damaging my body.

In terms of EDAW, I think that often people of genuinely mean well when they post things on social media, regarding their experiences. In posting this, I’m no different. But I can guarantee that there will be progress pictures, of lowest weight to now and whilst I am proud of people for managing to battle through and get out of the mess that is an ED, seeing emaciated bodies isn’t helpful because it just re-enforces the feelings of not feeling skinny enough, ill enough or frail enough to have an eating disorder.

There does need to be more awareness about eating disorders. They are the most dangerous and fatal of all psychiatric illnesses. Yet people are being turned away from treatment. There’s something going really wrong there. I struggle to understand the logic of turning a person away from treatment on the grounds that their BMI isn’t low enough, when at no point would a person be turned away for treatment for a broken bone because their bone isn’t broken enough.

I don’t have the answers on how this can change. Mental health services are vastly underfunded and too many people are being failed. Too many people could have been helped through virtually non-existent early health intervention, but are being left to become more unwell because their struggles have been unvalidated and ignored. It needs to change. It really needs to change.