January Favourites

7t8n

January is a funny month, it’s technically not any longer than any other month in the year but it seems to go on forever. I have months which are jammed packed with hospital appointments and this month has been one of those months. Aside from all the appointments, I’ve been hibernating under my duvet, making my way through all my pyjamas, because who wants to wear proper clothes in January?

Onto to things that I’ve been enjoying this month…

Books

All month, I’ve been excited about the release of Kick The Moon by Muhammad Khan. I pre-ordered this book towards the end of last year and it did not disappoint. I loved Khan’s first book I Am Thunder, so much so that it made its way into my 2018 favourites blog post. Kick The Moon is funny, powerful and relatable and is all about making and breaking friendships and cross cultural friendships and the stigma surrounding them. This book possibly wasn’t as stand out as I Am Thunder but still very much worth reading if you’re at all interested in British-Muslim cultures and the stereotypes surrounding it.

Another book which I’ve really enjoyed this month is Killer T by Rober Muchamore. This book follows two teenagers, whose lives are shaped by a society that’s shifting around them. One is a lonely Brit in his first term at a Las Vegas high school, the other is an unlikely friend, who gets accused of mixing a batch of explosives that blew up a football player. The two of them are drawn together at a time when gene editing technology is starting to explode. With a lab in the garage anyone can beat cancer, enhance their brain to pass exams, or tweak a few genes for that year-round tan and perfect beach body. However, in the wrong hands gene editing can become one of the most deadly weapons in history.  Killer T is a synthetic virus with a ninety per-cent mortality rate, and the terrorists who created it want a billion dollars before they’ll release a vaccine. This book was a real page turner. As a teenager, I loved Muchamore’s Cherub series and whilst this book is way more dystopian than the Cherub series, I still loved it.

That’s Not What Happened by Kody Keplinger has also made my hit list for this month. I ended up picking this book up in Belfast airport, whilst waiting for my delayed flight back home. There’s not much in Belfast airport so before starting to read it, I was ready to spoon by own eyeballs out with boredom. I was a bit sceptical about reading this book and wasn’t sure if it was going to sit comfortably with me. It’s based in a high school in the USA which has experienced a mass shooting and it explores the truth behind what actually happened and I wasn’t sure about how I felt reading a book which is so close to the reality of what has happened in a number of schools in the US. However, it was sensitively written and in no way glamourises the use of guns within the country. I would really recommend reading it.

As well as That’s Not What Happened, I also read Run by Kody Keplinger . Another story about the ferocity of friendship and the risks we’ll take to save our friends as well as ourselves. Run is an #OwnVoices novel with a legally-blind main character but also looks at sexuality. I loved that the main theme was on the strong bond between the two main female characters, and how their friendship comes to mean the world to each of them. Whilst there is a blind character and another character who is bisexual, this is normalised within the storyline by not heavily focusing on it.

 

Films and TV

People who know me well will know that Richard Hammond was my first love and that I will always love him a little bit too much. I refuse to watch the new Top Gear on the grounds that no one will ever be able to replicate the banter between James May, Richard Hammond and Jeremy Clarkson. The only reason that I ended up subscribing to Amazon Prime was so that I could watch The Grand Tour. I was a little disappointed by series one and two, however series three (so far) is much more like the old school Top Gear that I miss and love.

One of the best things about a new year means that it is the start of a new series of Silent Witness. Nothing beats curling up in bed watching people get murdered and then finding how how they got killed and who killed them. Something that has stood out in this series is how they are relating it to real life situations, such as the rise of attacks against trans people and drug country lines. I don’t think I’ll ever get bored of watching Silent Witness.

It kind of feels like I’ve been a little bit obsessed with Kody Keplinger this month. I ended up watching The DUFF, before realising that it was based upon the book by Keplinger, of the same name. Compared to other work by Keplinger, the storyline in The DUFF wasn’t as strong and was very much a chick-flick, with a boy saves girl thing going on. It was a good film, highlighting cyber bullying in schools and tries to celebrate individuality, but it didn’t require much concentration or effort to watch.

 

Odds and Sods

This month, I went to stay with a friend for a weekend. When there, we visited Virginia Water and it’s honestly one of the prettiest places that I’ve ever been to. It was very cold when we went, so we were both close to contracting mild hypothermia but the views were worth it. Plus, there were many cute dogs.

An exciting update from the Spoonie Village this month has been the launch of SpoonieVillage.com. Hayley, with the help of partner Tom, has created an online space for people with chronic illnesses, including a blog with regular updates, a forum and a one stop shop for all the spoonie essentials. I would really recommend checking it out and giving Hayley and Tom some love because they have worked so hard in created a safe space online for people.

 

 

 

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

2018b

 

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.

unnamed

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.

 

 

 

 

This Is Not Consent

Unless you’ve been living under a rock over the past few weeks then you will have heard about how a girl’s underwear was used as evidence in court, during a rape case. In the trial, the defence lawyer told the jury “you have to look at the way she was dressed. She was wearing a thong with a lace front.”

The 27-year-old man was found not guilty of rape shortly afterwards.

This case then led to a series of protests about how wearing a certain type of underwear does not equal giving consent.

opinions-bubbles

As a teenager, I was sexually assaulted. If you want all the explicit details about what happened, then you’re in the wrong place, because this is not the place to share them. I find it hard to speak openly about what happened, I have spent years blaming myself and analysing events, trying to work out how it happened and what I could have done differently.

But here’s the thing: I did not consent and just to make it really clear, my underwear did not consent on my behalf. When I was at university, someone said to me that I needed to consider how my behaviour and actions and what I was wearing will have encouraged him. That broke me and it was confirmation of everything that I had tormented myself with. However, I’m now at a point whereby I can recognise that my clothing did not play a part in what happened, I was wearing jeans and a jumper and even if I had been wearing a short skirt or a top showing my cleavage, that would not have been consent either.

Likewise, I know that my behaviour did nothing to encourage him. But again, had I been performing a strip tease and then changed my mind and firmly said “no” my behaviour still wouldn’t be consent.

I was not drunk. I had not been taking drugs. I was stone cold sober, fully aware of my surroundings and I was not wearing a thong. Using the argument that someone is wearing a thong and is therefore consenting completely bypasses the fact that you can’t see a person’s underwear until their clothing has been removed.

Some people would like to think sexual assault is just a result of miscommunication, especially if the victim has some tie to the perpetrator and believe the perpetrator to be incapable of doing such a thing. Let’s put it very simply: unless a person clearly says “yes” to any form of sexual contact then you can’t assume and go ahead with sexual acts.

Likewise, asking a person if they were under the influence of alcohol doesn’t then mean that the assault was justified. By asking if someone was drunk, you’re asking if they were openly making themselves more vulnerable and therefore “asking for it.”

Anyone who has experienced a sexual assault knows how damaging victim blaming can be. Being asked what you were wearing or how you were behaving or even worse, why you didn’t fight back is so harmful. Only last month, women in London were being warned not to wear headphones or use mobile phones because of a number of sexual assaults. Yes, you need to be aware of your personal safety, regardless of gender and sexuality, but the only people who are responsible for sexual assaults are the perpetrators. Headphones don’t rape women, nor do their outfits or undwear or dark streets or clubs or alcohol and drugs or parties.

Don’t get me wrong, the people are carry out sexual assaults are in a minority and it is not a case of all men are bad. Women can also be perpetrators but we don’t see men being warned against wearing headphones. The reason that rape culture remains such as issues in the 21st century is because rape is still prevalent and sexual violence is normalised and excused in the media and popular culture: a women’s underwear being used as evidence in court is a perfect example of this. Women’s rights and safety are being disregarded by the very people who are meant to protect.

Women’s rights are human rights, and the blame has got to be shifted from women who suffer sexualised violence  or assaults to men who inflict it upon them. People are told that they wouldn’t have been attacked on the street if they weren’t walking alone, almost as if it was an inevitable event. That isn’t okay.

In the years since I was sexually assaulted, I have swung from blaming myself to being able to acknowledge that it was not my fault and then back again. Sometimes I feel utterly repulsed by myself, other times I feel repulsed by him. I’ve spent years in counselling and therapy, trying to come to terms with what happened. I can talk about the facts, but not the emotional side of events. But the thing is: I did not say yes and fundamentally, that was not respected.

September Favourites

Okay, so I know that I say this pretty much every single month, but how are we almost at the end of September?! I feel like I’ve blinked and nine months have passed without me realising. I could have had a child in this time. Obviously no children are planned any time soon.

Onto the things that I have been loving this month!

Books

For various reasons, I haven’t been able to do a lot of reading this month. I have just started reading the forth book in the Cormoran Strike series, Lethal White by Robert Galbraith. Crime thrillers are one of my favourite genres to read so I was really excited when I found out that this had been published. The books are complex and engaging and Galbraith (pseudonym of J.K. Rowling) has succeeded in making the characters real and believable. As much as I loved the Cuckoo’s Calling, the first book in the series, I think that Lethal White could very quickly become my new most loved book in the series. I can’t wait to sit down and read more!

TV/Film

People who know me well (actually not even well) will know that I love September for one big reason. Strictly Come Dancing is back!

giphy

I am SCD obsessed and rarely miss an episode. If I miss an episode, it has to be for a very good reason and when possible, I will avoid all social interaction on Saturday evenings until the series ends. I’ve already got various opinions on the contestants, along with the professionals and Stacey Dooley and Faye Tozer are already my favourites.

I can’t write a September favourites blog post without mentioning The Bodyguard. Just wow. 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.

Spoonie Favourites

I am not ashamed to say that with the more autumnal weather, my electric blanket has made an appearance. Autumn and winter are my preferred seasons, I love fluffy jumpers, scarves, Ugg boots and cosy evenings in front of the fire but my joints aren’t so keen on the colder weather, especially if there are any sudden temperature drops. My electric blanket is an essential piece of equipment not only to keep me roasty toasty but also to help save my joints from seizing up. My cat loves the electric blanket too!

0-3

Since being diagnosed with gastroparesis, I have struggled more with musculoskeletal issues in my shoulders and neck, or as my phyiso refers to the matter “sick muscle problems.’ I mean, she’s right, if a little blunt. During a recent physio appointment, I was told that my neck felt like it had a concrete rod down my neck and it felt very similar to me. I already had a V-shaped pillow but it wasn’t very supportive, so I have invested in a slightly more expensive one, which gives more support. It hasn’t completely resolved the issues, but being able to sleep with my neck and shoulders getting more support has made a difference.

On the same theme, this month I also invested in a memory foam pillow. Where has this been all of my life? Because of above reasons, I need a firm pillow and the memory foam pillow has done the job. I love my bed anyway, but the new combination of a memory foam pillow, new V-shaped pillow and my electric blanket and I might just set up home in my bed.

jS1KZWL

Odds and Sods

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. Time will tell, but it smells so much better than bio-oil, is less greasy and is absorbed more quickly.

August Favourites

images

Welcome to another monthly favourites post, looking at all the things I’ve been loving in August! This month seems to have flown by and it’s mad to think that we are nearly in September. Bring on the cosy evenings in front of the fire, fluffy jumpers and Ugg boots. People who know me will know that I’m not a huge fan of summer and much prefer freezing cold winter days…I can’t wait.

Due to being pretty unwell over the past four or five weeks, this post is probably going to be a bit shorter than my usual monthly favourites posts, simply because in between a lot of sleeping and a lot of time being spent in hospital, I haven’t really done a lot to warrant favourites. But anyway, here we go…

Books

Last month, I talked about Holly Bourne’s first adult fiction book, How Do You Like Me Now? which has recently released and that I had fairly low expectations, as her last young adult fiction book which had been released prior to that, wasn’t that great and felt rushed. After reading her latest release, back under the YA fiction umbrella, I can confirm that Holly Bourne is back. Are We All Lemmings and Snowflakes is possibly Holly’s best book, with a strong and unique plot line. As per her other books, Holly has focused on mental health, normalising it and reducing the stigma. The book follows Olive, a teenage girl living on the edge of a mental health crisis, who is given the opportunity to attend a summer camp for teens struggling with mental illnesses. Through her own experiences, Olive begins to put together a plan to not only solve her own mental illness, but the mental illnesses of everyone in the world. It is raw, compassionate and explores mental health in a sensitive but informative way.

Another book that I have enjoyed this month is Don’t Stop Thinking About Tomorrow by Siobhan Curham. This is another book which has been beautifully written, looking at issues surrounding young carers and children and young people with refugee status in the UK. Stevie lives with her mum, on the poverty line, after her mum’s benefits are stopped. Hafiz is a Syrian refugee. Both are big dreamers and as their friendship develops, they begin to understand their similarities as well as their differences. Having experienced the benefits system, parts of this book really resonated with me: Siobhan highlights how powerless you end up feeling, when you are treated as nothing more than a statistical figure as opposed to a person.

Films/TV

Over the past few months, I have been watching Ackley Bridge and have ended up getting kind of hooked to it. When Waterloo Road was being shown on television, I was obsessed with it and now have the box set on DVD, which keeps me sane when insomnia strikes. Ackley Bridge is similar to Waterloo Road, in that it focuses on the lives of various students and members of staff at Ackley Bridge College. It’s probably not going to win any awards but it’s worth watching if you need something that doesn’t require much concentration. Series one and two are available to watch online now.

This month I did something very rare for me and went to the cinema to see Mamma Mia: Here We Go Again. My mum and I both love Mamma Mia, it is our go to film on rainy days, so it was only right that we went to the cinema to see the second film. I was a bit skeptical about it and wasn’t sure if it would live up to the hype and expectations but I loved it. It really is a proper feel good film (ignoring the gut wrenching scenes towards the end) and Lily James is beautiful.

maxresdefault

I am so excited that the line up to Strictly Come Dancing has been announced. Reminder to all my friends: don’t expect me to socialise on Saturday evenings once it starts!

The Great British Bake Off is also back soon. After just about getting over the move from the BBC to channel four, I am able to admit that actually, the new line up works well. I’m still loyal to Mary Berry but as the presenters and judges have gelled, it doesn’t feel as cringe to watch and for the most part, they are funny.

Spoonie Favourites

Let’s talk about pyjamas. I spent a lot of time in my pyjamas and if I got my own way, I would spent a lot more time in pyjamas. Because of this, I take pyjama buying very seriously. The majority of my pyjamas used to be M&S but recently, I’ve been disappointed in the quality of them, especially as they shrink in the wash and end up as angle swingers. That’s saying something considering how short my legs are. Having tried various other brands including Matalan, Tesco and Fat Face, I ended up buying a couple of pairs from Sainsbury’s and I can’t fault them. They are super soft, cosy and don’t shrink in the wash. They’re also fairly cheap, so any excuse to buy more!

Odds and Sods 

Pudology.Logo-retina

Having gastroparesis means that food is something that I have come to dread, rather than enjoy, so finding foods that I’m able to eat without being sick and actually taste nice is fairly unheard of. I came across the brand Pudology, who make gluten and dairy free desserts, which is perfect for the diet that I have to follow. They taste so good and so far, I seem to have been able to eat them without any vomiting, which is great news!

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

I’m Not Inspirational: Addison’s Diagnosis

I recently wrote a blog post which was a bit of a health update and talked about my diagnosis of Addison’s Disease. Much like my other health conditions, Addison’s Disease is classed as a rare disease: approximately 8,400 people in the UK have Addison’s disease. Addison’s is also known as as primary adrenal insufficiency or hypoadrenalism, affecting the adrenal glands, which sit just above the kidneys. The adrenal glands produce two hormones: cortisol and aldosterone. When people have Addison’s, their adrenal glands are damaged, resulting in not enough cortisol and aldosterone are produced.

Being diagnosed with Addison’s has come as a huge shock and I don’t think that the seriousness of the illness has sunk in. I have been ill for years, but this scary ill, as I probably said in a previous post. The early symptoms of Addison’s a lack of energy, muscle weakness and loss of appetite, all things that I experienced anyway and were my normal. It will be interesting to see if the medication that I’m now on will make a difference.

With treatment, symptoms of Addison’s disease can largely be controlled. It is treated with medication to replace the missing hormones: I will be on medication for the rest of my life. However, people with Addison’s disease must be constantly aware of the risk of a sudden worsening of symptoms, called an adrenal crisis. This can happen when the levels of cortisol in your body fall significantly. It was really unfortunate that I experienced my first adrenal crisis on the same day as diagnosis. I have a lot of gaps in my memory with regards to my first adrenal crisis, which is probably for the best in some ways.

I am really lucky to have a medical team who are on the ball, I have received a phone call every day from someone in the endo team to check in with me and make sure that I’m coping okay. My friends have also been fantastic, I really cannot thank you enough. It means the world to me when people make the effort to read up about conditions that I’m diagnosed with to try and get a better understanding of what I’m going through. In fact, I’ve cried a few times from sheer gratitude.

But this brings me on to something that I just need to vent and put out there. I am not inspirational. None of this is a choice and I can’t wallow my symptoms away. I’m fairly open and honest about life, health and everything else but there are some things that I don’t share. I don’t always share the worst bits because it’s not appropriate, I’m not well enough and I want to keep a bit of dignity. I might joke about things, but that doesn’t mean that I’m okay or coping well with what it going on.

images

I find it so hard when people tell me that I’m inspirational because honestly, what choice do I have? I’m not writing to inspire anyone, or to be inspiring myself. I write because otherwise all these thoughts would be stuck in my brain and I would drive myself insane. I write because it gives me the freedom that physically, my body doesn’t give me. People often assume that people who are ill or disable are wondrous people, to be held with such high accolade. This is where I’m going to disappoint: I am just like you. I have good days and I have bad days. I watch shit TV, I can be grouchy and I can be off the wall happy. I can also be bloody boring at times but again, that’s the stuff that I don’t share because no one, I repeat, no one, cares if I plucked my eyebrows or tried a different shampoo.

Life can be really difficult. I have had to overcome things that other people my age perhaps would not have faced. But that doesn’t make me ashamed of my body and it’s wonkiness. Frustrated maybe, but not ashamed. Because this is my body and only am I allowed to pass judgment on it. I’ve had over 25 years living in my body and I’d like many more years. At times, I hate it. At times, I love it. Other times, I tolerate it as my home. It doesn’t always do what I would like it to do and that can make things challenging and it can lead me to question whether or not I can keep up the endless fight.  My normal is not the same as your normal. Your normal is not the same as anyone else’s normal. I’m not inspiring for being normal.