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.

 

Happy 70th Birthday, NHS

NHS_70_logoOn the 5th July 2018, the NHS will be turning seventy years old: that’s seventy years of providing lifesaving healthcare to a ever growing British population.

As someone with numerous chronic and long term illnesses, I am incredibly grateful for the NHS. I’m not sure where I would be without it – probably in spiralling debt. There are, undoubtedly, criticisms regarding the NHS, but this is not down to the 1.3 million people who work for it, more down to the current state of politics, but this is not the time to talk politics and policies. So many of the people who work for the NHS go unnoticed and unthanked. They work tirelessly to keep the British population healthy. Regardless of health or wealth, we can be reassured that if we fall ill or have an accident, we will receive the treatment that we need.

NHS staff see the best and worst of people. They welcome babies in the world, sharing the joy with new parents and they administer end of life care, ensuring that people die with dignity and that the families are supported, during a time of grief, upheaval and turmoil. They are often dealing with people who are going through trauma and they do their best to relieve some of the pain and anxiety, felt by those needing medical care, as well as the people around them.

Needing medical care isn’t an alien experience for me. In fact, it’s the opposite, thanks to the fact that I am diagnosed with various long term medical conditions. But although I’m more familiar with the inside of my local A&E department and other departments in near-by hospitals, compared to most people my age, the familiarity doesn’t change the fact that it is still a frightening experience. But I can honestly say that I remember every single nurse who has looked after me on those occasions and ensured that I felt as safe and as calm as possible. This is not an easy task when you are overworked, underpaid and often unappreciated.

I can remember the nurse who held my hand during a particularly bad night, during one hospital admission. I was crying in pain, with pain relief not even beginning to lessen it and this one particular nurse sat with me until I was calm and we talked about my life, hopes and ambitions and things that I enjoyed. She told me that she had moved to England from Brazil because she was so desperate to work for the NHS.

I can remember the nurses and occasional therapists who went out of their way to ensure that I was at ease prior to me having surgery at the age of eight. They made me laugh and brought Guinea pigs into my room, as part of animal therapy. They also reassured me post-surgery when I was afraid and wanted my mum.

I can remember the health care assistant who apologised repeatedly when she had to cut me out of a Crew Clothing jumper, when I was on a spinal board, and then suggested that I wore cheaper clothes next time I ended up on a spinal board with a suspected fractured neck and bad concussion. Thankfully there hasn’t been a “next time” but the joking eased the fear.

It’s not just nurses who make the NHS as good as it is. There are so many people who do their job every single day and remain pretty much unnoticed. There are the porters walking miles every single day, making sure patients are where they need to be; from experience porters are some of the kindest and funniest people I’ve ever met. True NHS heroes.

I can’t write about the NHS without mentioning GPs, in particular, my own very wonderful GP. My GP has been my biggest supporter for over ten years. She has fought a near-constant battle for me to receive the correct treatment for my various conditions and has never once given up on me, even when I have very much given up on myself. When you are diagnosed with a rare condition, one of the biggest hurdles faced is the lack of understanding from medical professionals. Yet my GP knows my body as well as I do and has gone out of her way to research and find out more about my conditions, so that she is able to treat me in the best possible way.

So, I’d like to take this opportunity to take everyone who works for the NHS. Thank you for caring.

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This post has been written in conjunction with Scope and will be appearing on their website.

 

 

 

 

 

Guest Post: Gracie’s Gladiators

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This month’s guest post is written by Nattie. Nattie lives in the Midlands with her husband and two children, Grace and Amelie and her family is the perfect example of the wonder of blended families. Nattie works in with a PR company, specialising in event management. Life for Nattie’s family was turned upside down a few months ago, following Gracie being diagnosed with leukaemia.

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What can I say about Gracie? She’s 10 years old, absolutely gorgeous, funny, kind, intelligent, an animal lover, a fantastic big sister and a lover of hugs and cuddles. Gracie is also a cancer patient.

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Grace at the age of seven, blowing out candles.

Earlier this year, Grace was diagnosed with leukaemia. She had been poorly off and on since the winter and we, along with doctors, thought that it was a lingering viral infection. She was very tired, often coming home from school and falling asleep on the sofa until tea time. On top of this, she was also having a difficult time at school with friendships and she is starting to get anxious about moving to high school in September 2019. Nothing major but Gracie is sensitive and we know from past experiences that she doesn’t deal well with conflict or change, it emotionally drains her.

We were’t too worried. That is until her energy levels dropped further. Her teacher rang us to raise concerns: Grace was falling asleep in school and she wasn’t managing to take part in PE lessons, a lesson that she loved. In general, she was very wobbly and her balance was getting worse. She was sad, something very unlike Grace.

When Grace contracted her fifth cold since January, we felt that enough was enough: our previously healthy little girl was struggling and our instincts knew that something else was going on. We decided to keep her off school for a week. On day three of Grace’s week off school, she had a nose bleed, which would not stop. After the 15 minute marker, I ended up calling paramedics. Gracie was dizzy and faint and as the nose bleed continued, the colour was literally draining out of her. Deep down, I think I knew that I wasn’t calling paramedics just for a nose bleed, there was something bigger going on here.

This view was echoed by the paramedics, who told me, very kindly, that they felt that Grace needed to be in hospital now. Upon arriving, Grace had numerous blood tests and her obs and sats caused the doctors some concern.

After what can only be described as the longest wait I’ve ever endured, a paediatrition told me that I might want to consider calling my husband. I explained that he was due to pick up my younger daughter from school but would be here later. My world shattered a bit when I was told that David needed to be here now. Gracie was also asking for her daddy, in between sleeping and being confused. I rang David and told him to get to the hospital right now and then called on my fantastic friend, Essie, to ask her to collect Amelie from school and look after her until I knew more.

David arrived at the hospital and we were taken into a private room. This was the point where we were told that our beautiful little girl had cancer.

The prognosis was “good” we were told. If a child is going to get cancer, the cancer that Grace was suspected of having was the most easily treated, with high chances of going into remission.

In the space of a day, our lives went from talking about phonics and the girls’ homework, arguing over who was going to clean the guinea pig’s cages, telling the girls to eat their carrots, CBBC programmes and ballet classes to talking about chemotherapy, Hickman lines, Picc lines, steroids, bone marrow, blood transfusions and side effects.

Grace was very muddled when we told her. She understood that she was extremely poorly and would need to stay in hospital to get better. The extreme nature of her treatment plan was lost on her and we made the choice to only tell her what was completely necessary. She asked if her hair would fall out and we told her that it probably would. Grace new about the Little Princess Trust, thanks to Laura cutting her long locks a few years ago and she decided that she wanted to shave her hair ASAP and donate it. Her next question broke us, she asked in a tiny voice if she was going to die.

A ten year old child should not be having to think about their own mortality. David and I explained that all of the doctors and nurses were going to do everything possible to make her better and all she had to think about was fighting as hard as she could.

In the weeks since Grace’s diagnosis, she has had six blood transfusions and two platelet transfusions. She’s had three lots of bone marrow taken, four general anaesthetics, one of which was to place a line into her chest. She’s had more blood tests than I can count. She’s had different sorts of chemo, including having it injected into her spine, which made her very unwell. She’s been on steroids and is on a cocktail of medicines to try and fight this beast. She’s spent time in ICU  with suspected sepsis and has been so so sick. She has spent most of her time in hospital, only having half days at home here and there.

Side effects have included sickness and fevers. Her month and throat have been covered in large ulcers, making eating almost impossible. Grace has had headaches which have made her scream with pain. The combination of treatment and being bed bound has caused serious muscle wastage so now our once energetic and sporty little girl is confined to a wheelchair, on the rare occasions when she manages to get out of bed. The steroids made her angry and emotional, on top of making her sleep deprived and exhausted.

Then there was the hair loss. Nothing prepared us for that, even though we knew it would happen and had talked about it. Grace dealt with it better than us, simply rolling up the hair which had come out during the night and then saying “I think we should shave it because I don’t need my hair right now.” So that’s what we did. Grace has been rocking hats since then.

Amelie is struggling. At the age of seven, it’s a huge change to get used to and due to infection risk, she’s only been able to see Grace a handful of times. Our friends and family have been taking turns to move into the house, to look after Ame, to try and maintain some normality.

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Grace’s hair, ready to be sent off to The Little Princess Trust. Bye bye blonde locks. 

Ame and Grace’s school have been wonderful, fundraising to help us out as a family. Grace’s class write a letter to Grace every week to talk about what they’ve been doing. Even though she’s not at school at the moment, they still want her to feel included. Ame’s teacher, along with teaching assistants are giving her 1-2-1 time every day, to give her the time and space to talk. The nurses at the children’s hospital, where Grace is being treated, are also helping us to support Amelie and are helping her to understand what is happening to her big sister.

I’ll be honest, my reason for writing this is to ask for help. If you can give blood, please give blood. It takes less than an hour and will literally save a life. Prior to Grace becoming ill, I hadn’t ever stopped and considered how important blood donation is. The simple fact is, Grace would not be alive right now if it wasn’t for the wonderful people how have already donated blood and I wish that I could thank every one in person for saving my little girl’s life.

If you can’t donate blood, please consider donating to Rainbow Trust or the Children’s Cancer and Leukaemia Group – two charities which have hugely helped our family.

As a family, we are scared right now. It physically hurts seeing Grace so unwell and it hurts seeing Amelie so sad and confused about what’s happening to her sister. Forcing your child to go through procedures which you know are going to cause pain goes against everything you believe in, as a mother. But the alternative is so much worse. I hate seeing Grace in pain and scared. I hate hearing her cries but I hope that one day, she will understand that it was all necessary to make her better. We know that we have a long journey ahead of us but our unconventional little family will only get stronger during this fight. We are Gracie’s Gladiators and we will not give up the fight.

 

Universal Credit Saga – Part Five

Welcome to your latest round-up on all things universal credit. Grab yourself a cup of tea or something stronger and get ready to find out more on the mind-fuck that is applying for universal credit.

Last week, I had my work capability assessment. I had a bit of an anxiety meltdown the morning of the assessment, basically crying because if the assessment doesn’t go my way, I am royally screwed. I think a lot of my fear stemmed back to validation and the fact that essentially, my future financial security, sanity and hopes were pinned on the decision of a stranger, who had never met me and that decision would overrule any made my medical professions, who are involved in my on-going care. As a result of my meltdown, my mum offered to come with me to the assessment, but would stay in the waiting room. This eased my fears slightly and off we trekked to the assessment centre, in the pouring rain, with me feeling like I was going to vomit. Plastic bags were packed just in case, although vomiting everywhere would only have strengthened my case.

The waiting room was typically British, only with more mobility aids and a smell of damp because we all resembled drowned rats. Everyone was moaning because the assessors were running late: two people lost the will to live and rearranged their appointments and the children belonging to the family who (I can only assume) thought that a trip to a health assessment centre was akin to a day out at the zoo, tried to pretend that their lives hadn’t ended during the hours waiting for their dad to finish in his assessment.

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Anyway. I was eventually seen and was in and out within half an hour. I was asked how my disability impacts on my day to day life, was told that I looked tired (no really?!) and was then asked if I could perform various movements: reaching up, making fists and then touching the floor. Hypermobile me excelled at this – my shoulders popped in and out as I reached up and I freaked the assessor out with how easily I could touch the floor, with my palms flat.

And that was it. I went home, got into bed and slept a solid 14 hours before rolling out of bed and going to a GP appointment.

Fast forward to today and I had the unenviably fun task of going to the job centre and handing in my latest fit note. I thought that it was going to be a simple case of handing it in and then leaving, but oh no, today I had the added fun of not only meeting a new work coach (I think my last one binned me off, can’t think why…) and then going through all my work commitments. Now, at this point, I would like to remind you of the phone call I received a few weeks ago, whereby I was told that all my work commitments had been switched off because I’m not fit to be working or searching for jobs. It would seem that my joy over someone having some common sense was short-lived: my work commitments haven’t been switched off and actually, I am still meant to be spending at least two hours a day job searching and keeping my CV up to date.

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I am so bloody confused.

Things got even better when my new work coach asked me if it was “just sickness” that was stopping me from working. Oh how I laughed, because that is properly funny. I explained in very simple terms, that even a halfwit could understand, that gastroparesis means paralysis of the digestive system and symptoms include but are not restricted to sickness and nausea, extreme bloating, pain and heartburn. The consequences of gastroparesis include being malnourished, which I am. Due to malnourishment, I am so exhausted that I frequently cannot stand up without my legs giving way, I’m constantly freezing cold, my skin is an attractive creamy-grey, my eyes have bigger bags that I knew was possible and I have bald patches where my hair as fallen out. Not to mention how much this is impacting on my already fragile mental health.

Apparently, I should find out within four weeks what the outcome is from my work assessment. I’m really apprehensive about it and it shows how broken the system is when the opinion of someone who has had a twenty minute conversation with me and then asked me to show off some of my EDS party tricks outweighs the opinions of my GP who has known me ten plus years, my physio who is specialised in chronic conditions, my gastro consultant who is the top consultant at the hospital and my therapist who has known me for three years. How is that right? Or fair?

Today I was told that the job centre would have a supportive role, regardless of the outcome. Thus far, their input has not been supportive, it has made me more unwell, stressed, anxious, depressed and I have been so close to giving up.

I mean, should the result be that I need to be in work, I could appeal but I’m now getting to the point where I’m really losing my fight. I know that, deep down, I have to keep fighting this, for me and everyone else caught out by a completely unjust system, but right now, I feel so defeated. I don’t even feel angry regarding my appointment today, just sad and exhausted.

Forcing someone into work, against the advice of professionals, isn’t supportive. This system is not supportive. This system is failing.

Gastro-what?!

Over the past few months, I’ve talked quite a bit about my latest diagnosis of gastroparesis. A lot of the time, I forget that for most people, medical jargon and understanding over medical conditions isn’t common knowledge, so with that in mind, I thought that I would explain a little bit more about what gastroparesis is and how it affects me in day to day life.

Gastroparesis is a long-term (chronic) condition where the stomach can’t empty itself in the normal way. Food passes through the stomach more slowly than usual: essentially, the digestive system becomes paralysed and in my case, food doesn’t pass through the digestive system at all. It’s thought to be the result of a problem with the nerves and muscles controlling the emptying of the stomach.

Whilst my diagnosis of gastroparesis has come very recently, I have been symptomatic for a number of years but put the symptoms down to EDS or food allergies/intolerances. Symptoms of gastroparesis can vary but include feeling full very quickly when eating, nausea and vomiting, loss of appetite, weight loss or weight gain, bloating, pain and discomfort and heartburn. People can experience weight loss or weight gain, although weight loss is more common. These symptoms can be mild or severe, and tend to come and go.

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On top of the symptoms, there can be some pretty nasty complications as a result of gastroparesis. Dehydration can occur due to repeated vomiting, which can cause hospitalisation, stomach acid can leak out of your stomach and into your gullet, known as gastro-oesophageal reflux disease (GORD), malnutrition can occur as not enough nutrients are being absorbed and people can experience problems with their blood sugar levels.

There isn’t an obvious cause for gastroparesis, although it can be linked to diabetes, complications from gastric surgeries and links to conditions such as Ehlers-Danlos Syndrome.

There are various ways in which gastroparesis can be diagnosed. I was diagnosed following an urgent referral to gastroenterology and having a gastric emptying scan using scintigraphy. Put simply, during this test, you eat food containing a small amount of a radioactive substance which can be detected during scans. Gastroparesis is diagnosed if more than 10% of the food is still in your stomach four hours after eating it. Other diagnostic tests can include bariumX-ray and endoscopies.

Gastroparesis can’t usually be cured, but dietary changes and medical treatment can help you control the condition.. I have been advised to follow a FODMAP diet, combined with a diet which is designed for people with gastroparesis. Since February, I have predominantly been on a liquid diet, drinking supplement drinks and eating very bland and simple foods when I’ve felt able to. It’s boring but I don’t miss eating. I miss the idea of food and have, at times, had some weird cravings but when faced with a plate of food, I feel incredibly anxious which in turn, makes the nausea and sickness worse. Catch-22.

Day to day, my symptoms can vary. I can had days where I am sick numerous times and can’t move off the bathroom floor because I feel so ill and exhausted. Equally, I can go two to three days at a time without being sick. However, during those three days, anything that I try to eat, will remain in my stomach undigested, and I will then be very very sick. It’s unpredictable and can make planning anything really difficult. I don’t like leaving the house because I’m scared that I will be sick.

I’m also really really tired, likely to be down to the fact that I am malnourished and I’m not absorbing the necessary nutrients. My hair has been falling out and whilst this has slowed down a bit now, I have been left with bald patches, which I’m self conscious about.

And then there’s the bloating. I have lost a lot of weight since February but I look like I’ve piled weight on because of how bloated I am. Again, this makes me so self conscious. I hate seeing my reflection and do whatever I can to avoid mirrors or reflective surfaces. As much as possible, I live in jeans and baggy jumpers, although now that the weather is getting warmer, this is getting harder.

My treatment at the moment consists of dietary changes and medication. However, there’s no indication that either of these things are working; I’m not seeing my gastro consultant again for a few months and I’m worried that by the time I see him again, things will have deteriorated further. My biggest fear is that I end up in hospital, needing a feeding tube. Unfortunately, this is a likely out-come, and I feel like I’m just waiting for things to get worse in order to get a clearer treatment plan.

Like other invisible conditions, gastroparesis can be really isolating. You don’t realise how much society revolves around food. I’ve missed out of so many social events because they have been food-based activities. My friends get it, but at the moment, the idea of explaining to restaurant staff why I’m not eating is a huddle that I’m not quite ready to face. People also tend to feel awkward if they are eating a meal and I’m not. Nutrition is a chore and scary, knowing that there isn’t a cure makes this hard to deal with. It’s slowly becoming my new normal though and I’m sure I’ll get my fight back soon.