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.

 

 

October Favourites

Ah it’s now officially autumn, my favourite season! This month has been pretty busy, by my spoonie standards, but I’ve still found plenty of time to curl up on the sofa, with my duvet and the fire burning, being a proper little hermit.

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Keep reading to find out what I’ve been loving this month.

Books

Only one book recommendation this month, as I’ve been slacking a bit with reading. I also haven’t had as much spare income, so I’m having a bit of a break from buying books. Sob. I went back to my childhood by reading My Mum, Tracy Beaker by the one and only Jacqueline Wilson.  As a child, I loved Jacqueline Wilson books, although unfortunately, as an adult, I loved this book a little less. I enjoyed the idea of Tracy Beaker returning, with a child, but Tracy is yet to grow up and behave like you would expect an adult to behave. I can’t comment on other books by Wilson as it’s been so long since I have read them, but it took a long time to fully get into the plot. That said, there are strong messages around happiness, money and family values and I love that the book explores relationships outside of the traditional hetro-sexual ones normally seen in children’s books.

Film/TV

The arrival of autumn means that all the good TV series are back and this year has not disappointed. Strictly Come Dancing continues to sparkle on Saturday evenings, with the added controversy of Seann and Katya and That Kiss.

Outside of the world of glitter and sequins, October saw the start of series 14 of The Apprentice. I’ve only been a hardcore fan of The Apprentice for the past few years and always worry that the series will burn out and become repetitive but thus far, this series seems to be pretty strong, with the usual mix of good business ideas and crazy levels of arrogance.

The BBC is excelling itself in new dramas at the moment, including Killing Eve and The Informer. Killing Eve has been a real wow of a series, with a strong female cast, seeing Jodie Comer take on the role of a sociopathic serial assassin, being hunted and investigated by Sandra Oh. In a series full of twists, these two fierce women, both equally obsessed with each other, go head to head in an epic game of cat and mouse, toppling the typical spy-action thriller, which we are used to seeing on our screens.

Spoonie Favourites

Over the past few months, I have been struggling more and more with pain. I am reluctant to increase any of my opiate medication anymore than I already have done, which has led to me exploring other pain relief options. So, today I had my second acupuncture session, to see if this can help with some of the pain and/or symptoms of gastroparesis. I’m yet to feel any benefits from it and if I’m honest, the sessions have left me feeling a little odd, thanks to a combination of losing sensation in my hands and feeling very spaced out, which I’m told is normal and should lessen as the sessions continue. But I am finding the overall experience relaxing which I guess is half the idea.

It’s no secret that I love pyjamas, I probably have more pyjamas than I do real clothes and I am totally okay with that. One of the best things about the change in season is new pyjamas and I am loving the pyjamas in White Stuff. They are so soft and cosy the the Midnight Bloom bottoms are my new favourite pyjamas.

Odds and Sods

At the very beginning of the month, I stayed with a close friend, who lives in London and went to the theatre to see Everybody’s Talking About Jamie, It was outstanding and possibly one of the best shows I’ve ever seen on stage. Based on the BBC3 documentary, Everybody’s Talking About Jamie follows teenagers Jamie New achieve his dream of becoming a drag queen and going to his school prom dressed as a drag queen. With themes such as prejudice, bullying, family relationships, race and culture, this musical could not be any more relevant for a 21st century audience. It is funny, raw, a little bit fabulous and very sassy. I walked out at the end wanting to see it all over again.

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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.

 

 

Gastroparesis Awareness Month – Sarah’s Story

Gastro what? That was my initial reaction to my doctor’s suggestion that a condition called gastroparesis may be causing my symptoms of nausea, reflux, stomach pain, bloating and vomiting. I had also lost a significant amount of weight taking me from a healthy BMI down to a BMI in the 13’s at my worst. Having been back and forth to the GP and gastroenterologist for over a year and a half I was desperate for an answer. Naively I thought an answer would mean a cure. That evening I took my prescription of domperidone home and opened up the NHS website, carefully typing in gastroparesis. As I read through the symptoms I ticked each one off, I didn’t know whether to celebrate or commiserate, here was my answer after all this time. But there is no cure.

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Now, I’m no stranger to chronic illness, having already been diagnosed with M.E/CFS, endometriosis, IBS and POTS. But my gastroparesis diagnosis was the hardest to accept as it is such a change to everyday life. Gastroparesis translates to stomach paralysis, meaning the stomach does not contract properly to move food through into the small bowel: it is thought to be caused by damage to the vagus nerve, however gastroparesis is still a little understood condition. For some patients they are able to eat small, frequent amounts of easily digestible foods and manage their symptoms with no medication just dietary changes. For some patients they take medications called prokinetic medications which help encourage the stomach to contract and empty, so they are able to eat more normally again, many patients also take antiemetic medications to stop them feeling or being sick. Some patients manage on a purée diet, others a full liquid diet. For the more severely affected patients their nutrition will be artificial in the form of either oral nutrition supplements (ONS), tube feeds (enteral nutrition) or sterile liquid nutrition IV (parenteral nutrition).

On the 6th  of March 2017 I finally had my gastric emptying study, I sat up in nuclear medicine eating my radioactive cottage pie, Sainsbury’s Basic, and stood in front of a scanner at regular intervals to see how much of the radioactive mash potato in my stomach. I felt like the test went on forever. For a few weeks before I hadn’t been allowed certain medications and on the morning of the study I wasn’t allowed anything to eat or drink, including my usual medication for my nausea. Consequently I spent the hours of the study feeling increasingly ill and was relieved when I was finally allowed to go, I didn’t even get my foot out of the door before taking my antiemetic tablet!

Just three days later, the 9th of March 2017, I was diagnosed with gastroparesis. I had been admitted to hospital to begin tube feedings after over a year of supplement drinks and ever decreasing weight and blood results. I initially started with a nasogastric (NG) tube, which slowly dripped a liquid feed into my stomach for 20 hours a day. After a few months it was apparent that the NG was not the right option for me, I wasn’t tolerating my feed and was therefore losing yet more weight. Next up was the nasojejunal (NJ) which was placed into the jejunum which is the second portion of the small intestine. My first one was placed as an outpatient procedure which unfortunately went a little off plan, somehow some bacteria got in with the tube and I ended up with a particularly nasty gastrointestinal infection which resulted in one home visit from an out of hours GP, two ambulances to A&E and another 10 day hospital admission. I left hospital half a stone lighter with an NG tube and a plan to retry the NJ tube in a few weeks as an inpatient for the sake of safety. Luckily the second time round everything went smoothly and after a number of weeks and a feed change I was finally feeling a little better! A few days short of a year after my first NG was placed my feeding tube was changed from the temporary NJ tube to a more permanent PEGJ (Percutaneous Endoscopic Gastrostomy with Jejunal extension), a feeding tube placed through the skin of your abdomen, through your abdominal wall and  into your stomach with another thinner tube inside which travels down into the jejunum. This allows access to the jejunum for feeds and the stomach for venting gas and draining bile, acid and built up stomach contents.

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At the time of starting tube feeding I was terrified, at the age of 25 I had spoken to my Mum about what I wanted my funeral to be like. I had lost my job from simply being too poorly to get out of bed and go to work most days, often having six weeks at a time off. But honestly, I’m so glad I consented to the tube feeds. Between the feeds and the right combination of medication I’ve got my life back. I once again have the energy to have days out (albeit in my wheelchair due to my other conditions), spend time with family and friends and have even met the most wonderful man who loves me despite my illnesses, wheelchair and feeding tubes both NJ and PEGJ. I’m also a hell of a lot stronger, I’ve met some lovely people I now consider good friends and appreciate life so much more. At the time of receiving my gastroparesis diagnosis I thought my life was ending. But really it was just starting again.

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Effective Treatment Pathways For EDS

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One of the hardest things that I have found, since being diagnosed with Ehlers-Danlos Syndrome is that there isn’t a clear treatment pathway or anyone overseeing my care. I am speaking as someone living in the south of England, this could well be different in other parts of the world and treatment various depending on where in the UK you live. This means that I don’t have anyone officially overseeing my care and treatment and instead, my treatment is scattered across numerous hospitals and departments and places in the country. I live in Oxfordshire, but receive treatment in London, as well as Oxford and I am under many specialists including physiotherapy, cardiology, infectious diseases and fatigue clinic, gastroenterology (in Oxford and London), rheumatology, urology, genetics and orthopaedics.

Very often, patients with EDS who are over the age of 18 have little or no care within the NHS. Healthcare workers and providers have no access to formal training, resulting in patients needing to self fund private care with the few specialists available, in order to manage their multiple,painful & life threatening disabilities.

I am really fortunate in the respect of being able to afford private treatment, but that cannot be a forever option because I don’t have an endless supply of money. I have to self-fund my physiotherapy treatment and have been for over five years, because on the NHS, I am only entitled to six sessions before being discharged. EDS is a chronic and incurable illness, which will not and can not be made better with six sessions of generic physiotherapy. My physio is amazing and was the first person who picked up on the possibility of me having EDS; I would be lost without her, I need regular and intensive physiotherapy to keep my body moving and to try and reduce pain. Think of it as a car needing a service or MOT to make sure it’s working, only I need physio every two weeks, not once a year.

Likewise with gastroenterology, I have paid to see a private consultant in London because I was receiving such poor treatment in Oxfordshire. My local gastroenterology consultant hadn’t heard of EDS and mis-diagnosed me to that very reason, and it was only because my mum and I pushed for further tests that I was finally diagnosed with gastroparesis. Currently, this is being “managed” through medication and dietary changes, only I am not getting better and the risk is, the longer I am left like this, the harder it will be to access other recognised treatments for gastroparesis because I won’t be well enough.

More recently, I ended up in urinary retention, which was later discovered to be due to a kidney infection. I have suffered for years with kidney infections, the first one being when I was on a French exchange, where I ended up in hospital. Unfortunately, GCSE French doesn’t extent to explaining to a doctor this awful and unexplainable pain, but I could tell them that I lived with my mum and rabbit and that my favourite subject was English and that I did the hoovering at home.

There is a link between EDS and urinary retention, which I tried to explain when I was in hospital, whilst having three nurses peering at me down below, trying to shove a tube into the urethral opening. It really is as fun as it sounds. No-one was particularly bothered about the fact that it was likely that this was happening due to the fact that I have EDS: in simple terms, because I have EDS, I am extra stretchy, which includes organs etc. The bladder expands anyway when it is full, but it had over expanded meaning that it then couldn’t contract and empty. Again, really fun.

I found that having a catheter fitted incredibly traumatic and I was all for yanking it out myself, after consulting Dr Google and Dr YouTube, about self removal of catheters. The trauma aside, I was also very concerned about the risks of having a catheter, as an EDS patients. Because our bodily make-up is different, there is an increase risk that once a catheter is fitted, the bladder ceases to function normally, therefore becoming dependent on a catheter.

There is no continuity of care. I am lucky to have a GP who is on the ball and supportive, but being under over nine hospital departments can become confusing, especially when people have conflicting views and options and more so when professionals don’t know of or believe in EDS. Trust me, it’s a real thing. Each time you meet a new professional, you have to explain everything because there is so much which could be as a result of EDS. Having a designated health care professional overseeing care would make a huge difference to patients like me, but also friends who I have met who also have EDS and other chronic illnesses.

Why am I going on about this? Because, simply, it needs to change. No other disease in the history of modern medicine has been neglected in the way that Ehlers-Danlos Syndrome has been.

A government petition has been set up, to try and improve healthcare for patients with EDS and more importantly, to improve on education of EDS and its different types, so that medical professionals are more aware of it. It is thought that only 5% of EDS suffers are diagnosed, with only 31% of people diagnosed in under ten years from when they first became symptomatic.

This has got to change. Please take two minutes out of your day to sign the petition. It might not seem like much to you if you don’t have a diagnosis of EDS or know anyone with a diagnosis, but for EDS patients, this could be life changing.

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