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.

 

 

 

 

Gastroparesis Awareness Month: Ellie’s Story

As part of HAN (Home Artificial Nutrition) Awareness Week and Gastroparesis Awareness Month, I thought I’d share my story. My name is Ellie and I’m eighteen years old.

Since the age of 13, chronic illness has played a massive part in my life. I am very new to the parenteral and enteral nutrition community, as I have only had a feeding tube since April this year.
My main conditions are Ehlers-Danlos Syndrome, which is a rare inherited condition that affects all the connective tissue in your body (including your digestive system).  I also have severe M.E (Myalgic Encephalomyelitis) which is a very misunderstood neurological condition, that leads to debilitating fatigue, painful muscles/joints, gastric disturbances, poor memory and much more.

Artificial nutrition is a medical treatment which allows a person to receive nutrition (food) and hydration (fluids) when they are no longer able to take them by mouth. This might be through a feeding tube or intravenously fed into the heart. Some people use tubes as assistance while also taking food by mouth, whereas others are fed solely by their tubes.

Without the support of my feeding tube, I wouldn’t be alive. Like any other human being, I still crave food. The textures, temperatures and smells of food get the better of me and I still eat sometimes. Watching people eat around me so freely sometimes can be so hard. Most of the time I chew gum or eat a mint to settle the hunger.

I have had to fight my corner to get the nutrition I desperately needed. I was loosing weight very fast, because of the severe pain and nausea after eating and drinking. Doctor’s either believed it was an eating disorder or just acid-reflix. It took until I was very medically unstable to be admitted to the gastrointestinal ward for help. Although I now have a feeding tube, it doesn’t cure the problem that I have.

We still don’t know what is the reason for all my digestive symptoms and doctors refuse to investigate further, which means the feeding tube will probably be with me forever. I am currently fed into my stomach through a naso-gastric tube, which is still causing a lot of problems for me, even at a very slow rate of feeding (mls/per hour). NG-tube feeding is usually only a temporary solution, therefore I am booked in to have a jejunostomy feeding tube surgically placed straight into my jejunum. This is the middle segment of the small intestine. Most of the nutrients present in food or my special liquid feed are absorbed by the jejunum so the purpose of a stomach isn’t needed.

This hopefully will cause less symptoms meaning that I can start to gain weight and have a better quality of life. Having a feeding tube isn’t glamorous or a fashion accessory. It’s survival. Having a feeding tube stuck on your face 24/7 can be mentally very draining. I find it very hard to cope with sometimes and some people think i suffer with anorexia because of the stereotype of them. Even medical professionals have told me to seek counselling because of my eating problems.

My biggest bit of advice is to never let alone tell you something that isn’t true. Don’t think that just because doctors are medical professionals, that automatically means they are correct.

Currently, I have a sinusitis infection, because the tube has caused so much inflammation throughout my nasal passage. This is one of the many downsides to having a tube.

Despite the feeding tube, i am determined to not let that get in the way of me living life.  I’m hoping that after having my jejunostomy surgery, I can attend rehabilitation to enable me to gain some independence back. Anyone who’s facing the prospect of a feeding tube or another form of nutrition needs to realise that it’s in their best interest.

Don’t feel like just because you can eat little bits that you aren’t worthy of needing one. I still snack on bits of food but I wouldn’t be able to sustain myself without the tube! Most importantly, don’t be frightened. I know it can feel very daunting as it’s life changing, but it’s nothing to worry about. The amount of support out there from other young people with feeding tubes is incredible. Even if locally, you don’t know anyone, there are always people to talk to and support groups! Some days will be the toughest day’s you’ll ever go through but in the end it’s so worth it.

We’re All Winners and Losers

Being diagnosed with a health condition, be that short term or long term, can make you re-evaluate your life and what you value as important. If you had asked twenty year old me, before diagnosis, I would have told you that my priorities focused around education, work and being self reliant. At that age, I was just starting my PGCE degree in primary education and I was very much striving to be an outstanding teacher. And I was, but as I became more unwell, being an outstanding teacher was coming at the cost of me constantly fighting infections, being really unhappy and stressed, not having a life outside of university and placements. But ultimately I was left feeling like my best would never be good enough, because my best was slipping because of my health.

After six gruelling months of teaching training, I made the decision to leave my PGCE degree, to focus on my health. At the time, it was a tough decision to make and it came down to how unhappy I was, more than considering my health, but as the months after university progressed, it became more and more apparent that my health wasn’t stable enough to cope with the demands that teaching expects of you. I still miss the idea of teaching, since I can remember, I had wanted to be a teacher so I felt very lost in a world where I was directionless.

Fast-forward a few years and whilst I might miss the idea of teaching, I am so glad that I stopped training before I was forced to stop. Since then, I have left another job because of the demands on my health, much of it due to working shifts and not being able to form a decent routine or get enough sleep. I thought that having official diagnoses would mean that managerial staff would be more understanding over my physical limitations, as well as the other odd things that my body can do as a result of EDS and its friends. I was perhaps naive in that thought: having a piece of paper stating that I have EDS doesn’t automatically ensure that people understand life with a chronic illness, more so when it is invisible.

Earlier in the year, I talked about being offered a job in children’s social services, in the early intervention team. It was my dream job and something that I had been working towards since leaving university. I had to kiss goodbye to that job because of how unwell I’ve been and I’m not going to kid myself into thinking that one day I will be able to go into that line of work. I really do hope that one day I can return to work but realistically, it won’t be in early intervention work because my body won’t cope with the demands, hours and stresses from the job. It’s not just my own health or life that I have consider, I need to think about potential families I would be working with. They need continuity and that’t not something that I can offer.

Similar applies to my inner dream of working in the police force. For all the reasons that I’ve stated about, it’s not a practical line of work and let’s be honest, I wouldn’t even get close to passing the medical tests.

I now spend my days writing, reading, sleeping and sometimes I go a bit wild and sit in the garden. I have to plan my life around when I have medical appointments to try and ensure that I’m as well as possible to attend them, but chronic illness is unpredictable so even the best laid plans go wrong when it comes to attending appointments. I speak to friends every day. But I still feeling lonely, even though I’m not alone.

I’m probably making life with chronic illnesses a bit shit and yes, at times, it is. But there are positives, even if they aren’t glaringly obvious.

I’ve met some really wonderful people who also have chronic illnesses. We are an odd bunch; we don’t do the conventional things like go to the pub or go shopping all day. You’ll probably find us in pyjamas, watching rubbish TV or having a group nap. But that kind of support is invaluable, as is the understanding. We are unshakeable, nothing is too gross to talk about and we can symptom share without sounding like we are losing the plot. Our medical knowledge is extensive: why ring 111 when you can consult a spoonie friend?

I’ve also developed a new gratitude for the days when I’m well enough to do something. Planning things takes a lot more effort and energy. Days when I can spontaneously leave the house and few and far between but when I am able to, it feels amazing and it leaves me feeling like a normal twenty something woman again.

Younger me imagined that I would be a teacher and whilst that hasn’t happened, I do feel happy being able to dedicate more time to writing and raising awareness about chronic illnesses. I’ve been given opportunities to write articles for charities or other blogging platforms and was recently nominated for two WEGO Health Awards, for best in show: blogging and rookie of the year. You can find out more and vote for me here.

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I’m getting opportunities which I would not be able to follow up on, if I was working, which is exciting and nerve-wracking at the same time.

That doesn’t take away the uncertainty or the fact that some days are just shit, but I find it is so important to try and focus on the things which are positive and make life easier to contend with. Health anxiety isn’t ever going to go away, scanxiety isn’t ever going to not be there and as much as I wish for it, I’m not never going to be 100% healthy and stable. I can’t go on week long benders but I’m a pro at watching a whole box set in a day. It’s the little things that make up life.

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.

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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.

June Favourites

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Photo from spoonievillage calendar

 

Welcome to another monthly favourites post, looking at all the things I’ve been loving in June! At the time of writing this, it is exactly six months until Christmas and I’m not sorry to admit that I am somewhat pining for cold weather, fluffy jumpers and evenings with the fire lit. Hot weather doesn’t agree too well with my body. Anyway, on with my favourites for this month…

Books

Last month, I talked about I Am Thunder: And I Won’t Keep Quiet by Muhammad Khan and how much I loved it. It made me realise, however, how little I know about Islamic culture and a lot of what I did know, was based on new reports, which can give a very one-sided viewpoint. So, with that in mind, I decided to educate myself a little bit and find out more about Islamic culture, through the medium of books. After searching on Amazon, I came across Randa Abdel-Fattah, a litigation lawyer and human rights activist, living in Sydney. Her first book, Does My Head Look Big in This, follows the story of Amal, a sixteen year old living in Melbourne, who also happens to be a Muslim, struggling to honour the Islamic faith in a society that doesn’t understand it, following her decision to start wearing this hijab. The book is insightful, laugh out loud funny and at times, a bit of a tear jerker, and I’m not known for crying at books.

The second book by Abdel-Fattah that I read this month is The Lines We Cross. The book has a similar set up to Does My Head Look Big in This: it is set in an Australian secondary school and looks at how society perceives different cultures and religions, with anti-immigration rallies fighting against the raise of immigration into Australia. The flip side of this books looks at the story of an Afghani asylum seeker, who came to Australia on a boat, following besiegement of her home country and faces a negative reception from native Australians. Again, I would really recommend this book, despite it being a YA book, its themes are applicable to adults and teenagers alike.

A Quiet Kind of Thunder by Sara Barnard was another favourite this month. Steffi has been a selective mute for most of her life – she’s been silent for so long that she feels completely invisible. But Rhys, the new boy at school, sees her. He’s deaf, and her knowledge of basic sign language means that she’s assigned to look after him. Put simply, this book was beautiful and I loved the perspective from Rhys, looking at how deaf people feel and deal with the hearing world, as well as how Steffi manages her social anxiety and the assumptions made by people around her.

My final book favourite for this month is Because We Are Bad by Lily Bailey. Anyone who wants to know about OCD, and how to fight back, should read this book – it is an emotional, challenging read. Lily takes the reader deep into the heart of the illness but she is also a deft writer, and even the darkest moments are peppered with wit and wry observations. Having a diagnosis of OCD meant that, at times, this book was a little hard hitting but I appreciate Lily’s honesty and could really relate to aspects of the book.

Films/TV

 

Okay so I only have one favourite from film and TV this month which is…dun dun duuuunnnn…

LOVE ISLAND.

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I am obsessed with this series and the first thing that I do when I wake up in the morning is watch the previous night’s episode on catch up. My life simply would not be complete without the daily debriefs with friends. My standout moments so far are Hayley on Brexit (and trees) and Rosie’s sass towards Adam. I still haven’t got over Kendall being dumped from the villa and I don’t think I ever will.

Spoonie Favourites

 

The Body Shop has come up on top again this month, with their spoonie friendly makeup and cosmetic products. A lot of the time, I don’t have the energy to spend ages and ages doing my makeup of 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. A complete life saver in hot weather has been their mandarin face mist, which hydrates skin and is makeup friendly. Great if you need a quick refresh without any effort.

Another life saver has been their aloe soothing moisture lotion, with SPF 15. If you’re anything like me, putting sun cream on your face will result in claggy and blocked pores and all the spots, so this is brilliant at protecting your skin without breaking out in twenty million spots. It’s designed for sensitive skin and is paraben and alcohol free.

Continuing on the theme of quick and easy makeup products, Soap and Glory Fake Awake has been a recent discovery and is brilliant at covering up my ever growing dark circles, with minimal effort and time.

 

What have your favourites been this month? I love finding out what other people have been loving and would recommend.

 

Let’s Talk: Mental Health

May is a busy month when it comes to spreading awareness. On top of it being Ehlers-Danlos Syndrome awareness month, it is also mental health awareness month. May 2018 marks a decade of me suddenly plummeting into a world whereby I am all to aware about mental health and mental illness. and I’ll be honest, I have been dreading it.

In May 2008, a very close friend committed suicide. I’ve spoken about the suicide of Nicola and another friend in another blog post, but given that it’s mental health awareness month and a decade on from Nicola’s death, I wanted to touch on it again.

Nicola and I met at nursery, she was confident, sassy and clever. She took me under her wing and made me feel better about being forced to learn French and German and having to eat quiche for lunch. Her sassiness only grew as she got older, she stood up for what she believed was right and was fiercely loyal and caring to everyone in her life.

I found out that Nicola had died shortly before leaving for school, when I was in year 10. It didn’t seem real, I can remember telling my friend, who I was walking to school with, and there was a level of disbelief from both of us: considering the news that I had just received, I was incredibly calm, stating that Nicola had died as though I was announcing that the sky was blue. My day carried on as normal for a few hours, before I crumpled and the news really hit. It seemed impossible that my sassy and fiery friend was no longer alive.

Nicola hadn’t said anything to anyone in her life which would have given us a clue of how low she was feeling. This remains that hardest thing for me, ten years one, I maintain that I should have seen something, I should have picked up that she wasn’t happy.  I spent weeks and months analysing our saved conversations on instant messenger to see if there was something I had missed. It reached the point where I made myself ill analysing these messages and I convinced myself that I was an awful person for not picking up on subtle changes on Nicola’s behaviour in the weeks leading up to her death.

Prior to Nicola’s death, I am not ashamed to say that I was fairly oblivious to mental illnesses. Yet, all of a sudden, I was thrown into a world where suicide, depression, anxiety and self harm became every day language.

This is where I am going to be really honest. I’m struggling at the moment and in the interests of transparency, I’m admitting that, although I find it hard to. I am open and honest about my mental health: I talk to my GP, therapist and physiotherapist about it and I talk to friends and family. But I normally do the talking after the blip/crisis has passed, not during the moments of feeling rubbish.

A lot of this is probably circumstantial. On top of the on-going issues relating to EDS, gastroparesis etc, I am normal person sick. It’s not the end of world, but it has made things considerably harder and physically, I have felt crap.  Lying in bed with all the time in the world has given more too much time to think. Turns out that being malnourished adds a lot of time to the whole recovery from illness thing. Who knew?

I just feel sad. And it’s okay that I feel sad. I am allowed to feel sad. Three years post-EDS diagnosis and I have more or less got my head around the genetic monster that has invaded my body. It’s still hard, sometimes it’s really hard but I’m used to it. It’s my normal and I am used to dealing with that normal. Throw in gastroparesis to the mix and yet again I am feeling like I have been chewed up by life, vomited back up, chucked around a bit and chewed up again.

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Illness has changed me as a person. I don’t mean that in a philosophical way, I mean it in a literal way. Before I became ill, I was punctual, social, confident and fairly carefree. Now that I am ill the best way that I can describe myself is flaky. I cancel plans more often than following them through, leaving the house alone makes me so anxious because I don’t trust my body and it feels like a military operation if I do manage to walk out of the front door.

I cancel plans because I’m sick, not because I don’t care or value my friends. I hope that my friends understand this, cancelling plans isn’t easy and I will often need to psych myself up to send that text because I hate letting my friends down or making them sad, annoyed or whatever. We are currently half way through May and this year I have missed birthdays, theatre shows, meet ups, planned days out, events and meetings all because I am too sick to leave the house, or I am exhausted, overly anxious or simply without the mental willpower to actual deal with adulting.

I have had enough. I have had enough of this life. I didn’t ask for this. No one asks to be ill but right now, I am struggling with huge and unexpected lifestyle changes that I’m having to go through. I feel so so isolated, more than I can put into words. Which is obviously going to impact on how I’m feeling.

I’m an anxious, sad, tired mess and I want to run away and escape for a while. Although the irony of that is that I’m not well enough to do that. Eye roll. I think the fact that the weather is improving is another factor which makes things harder.   I want to be outside, drinking gin in a pub garden, going for walks by the river, having day trips to the beach or enjoying the countryside around where I live. None of that is possible.

Much like chronic illnesses, you can’t see mental illnesses but it is something becoming more and more prevalent in society, however that isn’t something which is reflected by the government’s mental health strategy.

When given the choice between being right or being kind: choose kind.

R.J. Palacio, Wonder

My message here is simple: be kind to people because not being able to see their suffering does not mean that they are okay. Give your friends a hug because they might really need it. Ask your friends and family how they are and give them the time and space to talk. Text a friend who you haven’t heard from, for a while. Reach out, care and be kind.