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.

 

 

 

 

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.

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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.

The death of my dad: twenty five years on

This week marks twenty five years since the death of my dad. It’s a bit of an odd time of year, if I’m honest, because my dad died two days before my first birthday so going from two extreme moods in such a short space of time always messes with my head a bit.

Something I’m asked quite often is if i miss my dad. It’s a hard question to answer because it’s difficult to miss something or someone you don’t know. I don’t have any memories of my dad, although we is talked about openly by family and friends. At times, I miss the idea of having a dad and I miss the idea of having a more conventional childhood. But realistically, the conventional childhood of two parents and 2.4 children is becoming less common and “normal”.

As a child, I can remember times when I was embarrassed by the fact that my dad wasn’t alive. That might sound odd, I think it was linked to not wanting people to feel sorry for me. When I was in year three, my class teacher asked me, in front of the whole class, why my mum had only put down for one ticket for an event at school. I didn’t have the confidence to say in front of everyone that it wasn’t a mistake, it was just my mum and I and, actually, my dad was dead. That was my normal, but so very abnormal to other people.

By the time I reached my teenage years, I became more comfortable in telling people that my dad was dead. I met other people who had experienced bereavement and I didn’t feel as isolated. As my understanding grew, so did my outspokenness. One of my biggest frustrations is being lumped under the single parent umbrella. My mum did not choose to raise mess a single parent: when you have a child with a person that you love, you don’t envisage that it will result in raising the child alone, be that as a result of divorce or separation or death of a parent. I am from a single parent family, as are many of my friends, for various reasons. I defied the statistics and wasn’t suspended from school (the opposite, I went through school without ever getting a detention), I completed my a-levels, I didn’t and still don’t have a criminal record and I was not a teen parent. I valued my education.

When you lose a parent, it’s the big milestones that can really test me. The big birthdays, the achievements, the weddings and the thought of potentially having children, in future, and them not knowing their grandfather. However, as time goes on, I’m able to see them as a chance to remember and celebrate their part in my life rather than simply suffering through these events all the time. I’ve also learnt that not everyone will get it. Please, don’t bitch about your parents in front of me, unless you have extenuating circumstances. I’ll never forgot, at the age of ten, one of my peers told me that I was lucky that my dad was dead, because it meant that it was one less parent I’d have to convince if I wanted something. Sure, I’m really lucky. Get some perspective on how truly fleeting life is. This is a club that I never wanted to join and yet I can’t revoke my membership.

Having lost my dad at such a young age, I get very anxious at the thought of losing my mum. Obviously I’m not stupid, no one is going to life forever but the thought of her dying makes me want to physically throw up. For my whole life, it’s been my mum and I, battling against the odds and ridings and ups and downs and the thought of facing life alone or without her really scares me. When I was a child, I used to panic beyond belief whenever my mum was ill, even if it was just a cold. It puts me in a situation completely out of my control and I hate that.

Life does go on, but there will be times even all these years later, I will still break down like it happened yesterday. When those moments happen, I’m not sure why I’m breaking down, because I don’t know any different. This is my reality.

 

 

Universal Credit Saga – Part Seven

It’s been a while since I had anything to say about universal credit. Mostly this is because I haven’t felt well enough to battle the broken system and for the most part, it hadn’t been causing me any issues, personally, so my feelings and views on it have been forced to take a back seat.

That was, until this past month. I check my bank account regularly because I don’t trust the benefits system to continuously pay me without any issues. When I checked my bank account a few weeks ago, I realised that I wasn’t paid my last universal credit payment, meaning that I was very overdrawn. It’s been an expensive few weeks with birthdays and various other things so my outgoings were higher than normal but that still didn’t explain how I was so massively overdrawn.

I’ve always been very careful with my money and budgeting was a skill that was instilled into me as a teenager. Finding out that I was overdrawn caused a whole new level of anxiety but I pulled myself together and went to the job centre to ask where the hell my money was at.

If you’ve been a regular follower of the universal credit sage, you’ll know that my experiences at the job centre have been less than positive: I’d like to say that this time things were different but that was not the case. I explained, very calmly, to the work coach that my payment hadn’t gone in and as a result, I was overdrawn. I kid you not, the work coach shrugged in reply and told me that “these things happen”. There have been admin issues over the past few weeks, which has meant that not all payments have gone out on time. Admin errors happen, what I am more frustrated about has been the sheer lack of communication, so I had no idea that this was the case.

I told the work coach, again, that I was overdrawn as a result of the payment not going on and was told that I would benefit from seeking advice from the Money Advice Service. The Money Advice Service is an organisation established with cross Government party support, that provides free and impartial advice on money and financial decisions to people in the United Kingdom. It is a really useful service, but not a service that I require at this time, because when my payments go in, I am very able at managing my own money. It’s very hard, however, to manage you’re money when you’re not receiving the money in the first place.

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I thought that things were taking a more positive turn when the work coach asked me if I needed vouchers so that I could access the food bank. The situation that I’m in means that actually, I don’t need them, because I eat very little due to gastroparesis, and the supplement drinks that I have are on prescription. This is where it gets interesting: the average person will spend between £15 and £20 per week on food shopping. The job centre were offering me a £5 voucher, to last me a month. That is not enough to cover even the very basic amounts of food that I am able to eat.

 

This left me in a somewhat desperate situation. By the time I got home, I was in tears because of anxiety and felt pretty ill, in general. With my mum’s help, the situation was de-escalated and we agreed that she would lend me some money to help me until my next payment date.

The end result has been that I had a double payment on my most recent payment date, so financially, I’m back to where I should be.

Universal Credit makes people vulnerable. You’re constantly at the mercy of an admin system that may or may not work. And when it doesn’t work, things can go really wrong. People can so easily end up in rent arrears, which can put their housing at risk. Mortgage repayments can be missed. Bills don’t get paid. So many people expected that Universal Credit would be a Universal Failure, however the scale of the failure really is shocking. It has cost four times as much to run per person as predict, at approximately £700 per claim. A fifth of claimants’ payments have been delayed and it is pushing unsustainable burdens onto local authorities to pick up the pieces when it does go wrong. Food banks, churches and charities are having to support increasing numbers of people, yet despite all of this, we are told that we are too far along with the process now, for it to be reversed. Universal credit hasn’t been rolled out across the whole country yet, so all these failures are set to increase further by 2023, when the rollout is set to be completed.

All these reasons are why I want to be working and not living off the state. Ten months on from the start of my experiences with universal credit and I still feel like a failure.

 

 

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!

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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!

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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.

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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

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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.

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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.

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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.